Snapping, Creaking Bones

Okay.  It has been one or two weeks now that when I wake up my bones are creaking, cracking, snapping sounding.  Just all this noise that has never been there before when I get out of bed.  A few weeks ago, the nails on my big toes were peeling right off and had vertical lines and were quite dry.  These are NEW symptoms that I have never had before (as in the 5 years that I had had Lyme Disease) so I attribute them to the herbs and I am thinking the Androgrphis.  Why?  Because Andrrographis has been known to interfere with progesterone and can cause a deficiency.  Progesterone facilitates strong bones.  I have also had itching, nails that are splitting, congestion and post nasal drip as well as a total lack of motivation in the mornings which are all a new cluster of symptoms that I haven't really had before in such an ongoing, daily, monthly consistent pattern that never goes away.  The problem I have is that I am taking the LB Core Protocol by Green Dragon Botanicals which is a mix of Buhners old Lyme disease protocol.  He now no longer recommends andrographis as a main Lyme herb as he used to.  The LB Core Protocol includes smilax, dandelion and then the spirochete killing herbs which are andrographis, Japanese knotweed and cats claw.  I have about one month and a half left of these herbs in this combination formula (you can't separate the herbs out as they are all combined in every capsule) and then I am thinking to eliminate the andrographis and just move forward with the other herbs.  The thing is, Japanese Knotweed seems to be difficult to find these days.  The two main sources that Buhner recommends for purchasing Japanese Knotweed and Cats Claw capsules from are out of stock and I have read that one of the sources shipment is being held up by the FDA indefinately.  Japanese Knotweed is considered an invasive plant species so maybe the worry that the FDA might have is the spread of it?   I don't know!  I just know that it is highly indicated for Lyme and that Buhner says if there was one herb he would recommend for all Lyme patients it would be Japanese Knotweed.  I think I need to say a prayer that the shipments get released by the FDA and sent to the sources.  I do believe I can buy the herbs in bulk and encapsulate them myself, but having four children, the thought of spending my time encapsulating herbs doesn't sound fun.  However, there are probobly hefty sums of money to be saved by buying in bulk and encapsulating myself.  We shall see.

Its been almost 6 months on Buhner Protocol!

Okay!  Well it has been almost 6 months of me doing this Buhner Protocol.  I would love to write that I felt better but actually it seemed to make me feel worse at first.  But I guess that is normal for late-stage or chronic lyme.  Anyway.  I am experimenting with not taking the Siberian Eleuthero right now as I have been having nervousness every morning and that was a symptom I didn't really have before starting the protocol and was beginning to drive me nuts.  Lately, I have been taking a vegan protein powder in the morning as well for about 5 days or so and seeing how that helps me.  I also eliminated the Circulation P capsules as I was doing a joint Buhner/Zhange protocol trying to hit heavy.  So far, I haven't been having morning nervousness but because I am making so many changes in a short amount of time it is hard to say whether it is the removal of the Circulation P and Siberian Eleuthro or the addition of the vegan protein powder that is eliminating the nervousness.  I am not one to make a ton of changes in a short amount of time as I generally like to go about things in a very systematic way in order to know exactly what was the cause of the nervousness.  I should add that I continue to have post-nasal drip or phlegm as well as nasal congestion that are all new symptoms that began with the protocol.  Not enjoying that very much.  And sometimes, like right now when I just drank a ton of cold water, my throat gets a real scratchy feeling.  Right now, I think the protocol is helping my body fight the lyme, yes, but I certainly don't feel better in the 2 month time period the Buhner says.  I am not having major symptom increase like I did when I first started the protocol - as in nearly every symptom I had came back (well, not the very worst of them like when I would close my eyes and my brain was mixing words all around in my head in complete mental confusion) but all the numbness, vibrations, depression, nerves, etc.  Man - it helps to know where all that stuff comes from when. 

How could I forget, I am also taking a couple of activated charcoal caps and 5 capsules of chlorella in the mornings before I eat as well.  Just to mop up any toxins.  So we shall see...I don't know.  But I just keep on keeping on!  I am not feeling terrible - I am definately through the worst but I should say when I added in a Coptis Purge Fire to my protocol a few weeks back all hell broke lose for a couple days until I stopped taking it.  It probobly was killing off more - but I just need a break.  I need a few months of feeling okay before we go deeper and kill more.  Yikes.

3rd Week of Artemesinin and an Update

Artemesinin:
Well, I haven't posted in a while.  So let me recap.  I did a 3rd week of Artemesinin.  I should say weekend of Artemesinin.  I took 500mg of Artemesinin 3x a day for 3 days in a row.  I was really, really fatigued which went away after I finished the course of Artemesinin.


Update
So ever since I began the herbs, the second time around after having the flu for 1.5 weeks where I didn't take any herbs, I have had head congestion.  I also have had a little bit of itching as well which makes me think it could be a mild yeast overgrowth issue so I took 1 fluconozole pill today to see if that helps.  I am also feeling unmotivated, not down or depressed, but just in the morning don't really have the motivation to get up and go and get things done.  I seem to have this very, very faint ongoing feeling of nervousness in my stomach as well.  Sometimes it is almost undetetable but it is just a feeling of uneasiness.  Geesh - I dislike it so much.  And an update on all the kids - they are are doing well.    They are getting along swimmingly with friends at school and all is well. 

2nd Weekend of Artemesinin

Well, I am taking 400mg of Artemesinin 3x a day for 2 days in a row.  Next weekend I will take 500mg of Artemesinin 3x a day for 2 days in a row and then take a week off.  I didn't have any symptoms the first night after taking the Artemesinin but the 2nd night I woke with vivid dreams and this morning I woke with a vivid dream.  So that is 2 nights in a row of vivid dreams.  The first night I also had some hot flashes along with the dream.  I have also had darker urine in the morning.  The vivid dreams are definately not the norm for me.  I am not a dreamer. Period.  I will see if I have another one tonight or if they are over for the week.  I am taking notes of all my symptoms and the days they occur on along with all the supplements, herbs I am taking that day so I know exactly what is going on and can track patterns.

Added in Artemesinin

So this weekend, I added in Artemesinin.  I took 3 capsules, 3x a day, for two days.  I have been coding all my symptoms that I have into a graph and I noticed an increase in muscle soreness and sensitivity to touch a couple days after taking Artemesinin.  So maybe the Babesia Duncani that I tested positive for causes the muscle fatigue - soreness and sensitivity.  When my kids would sit on me or move around, their little elbows and just minor touches would bring ALOT of pain to my skin and muscles.  I noticed a MAJOR increase in this after adding in the Artemesinin so it could be coincidence.

Encouragement: Another Chronic Lyme Recovery Story

So this one is a little more well known I think.  But I recently just started reading about Katina Makris, author of the book, Out of the Woods.  Her story wrapped up is that she lost everything - her marriage, her health (on disability and in a wheelchair), her homeopath practice - to something which she would later find out was Lyme Disease.  From what I have gathered, she was treated for several years with herbs, Cat's Claw and Japanese Knotweed and b-12 shots and has gained full recovery.  This is so uplifting and encouraging.

Here is an inspirational post from her blog.  Enjoy :-)

http://katinamakris.wordpress.com/2012/07/24/the-value-of-creating-sanctuary-for-true-healing/#comments

And here is a news article about her recovery.

http://www.ledgertranscript.com/article/battling-ticks-lyme-disease

Lately

Well, for the past 3 days I am feeling better.  Today is my very best day - I woke up feeling peaceful and happy and rested.  Love that it is Saturday and I got to sleep in.  We are packing a bunch of healthy snacks and going to be heading to the beach shortly - today it is supposed to be 74 degrees so we are making the most of it and our last few months here in Australia.  It is just so nice to not wake up having a feeling of being sad or lonely which is a feeling I have been waking up to the past few weeks.  It fades away as the morning goes on but this morning I didn't wake up with that feeling at all so that is nice!!!!

Yesterday I added in Artemesinin.  Today I am going to try to take 3 capsules 3x a day.  I believe the Klinghardt protocol for this is: 5 capsules, 3x a day, 2x a week, for 3 weeks with the fourth week off.  I am starting a little lower than the 5 capsules because I want to gauge my reaction just so I don't over do it.

As of now, I am still taking Level 3 Buhner LB Core Protocol Herbs.  I have been taking them now for 4 months!  Symptoms that I haven't had in a long time (!!!!) I began to have again.  But I know that LLMD's look for an increase in symptoms to judge the effectiveness of a treatment.  If there is no increase in symptoms then they either switch up the medications or consider that someone may not have Lyme and have something else.  So increased symptoms is a good thing.  It just doesn't feel so good.

I think the hardest symptom I have had is the depression.  I have always thought that the nervousness I get in my stomach was hard but the depression is just so tough emotionally.  And these symptoms I don't get lightly.  But it passed and here I am.  Feeling so good today.  And so happy. 

Okay.  Back to what I am taking.  I will just list it.

Green Dragon LB Core Protocol - 9caps, 3xday
Zhang HH2 - 1 cap, 3xday
Zhang Circulation P - 1 cap, 3xday (Just added in 4 days ago)
Allergy Research Artemesinin 100mg - 3caps, 3xday, 2 days a week, 3 weeks on, 1 week off

PLUS!!!
All of my vitamins I take on a regular basis - I know these are what help me get through the herxes.  I would be ONE BILLION TIMES WORSE without the vitamins.  I have these listed on my the sidebar of my blog and I religiously take every single one of them!!!

Now. Time to get dressed and ready for the beach!

(BTW - Not sure I am going to start the antiobiotics until I get back to the US - we are soon going into the sunny season here in Australia and Doxycycline, which is first on my list, causes sun sensitivity and not sure I need to deal with that!  Thinking about it...)

Symptoms Lately

Well the past 5 days I have been really tired.  It is 8:30 at night and all I want to do is sleep.  I am just really tired.  It has been a long time since I have had fatigue and that is what I am feeling right now.  I also had back of the leg pain for the first time which indicates to me a magnesium deficiency.  So I am doubling my dose on that.  I hope this fatigue doesn't last long -

Symptoms lately -
Numb Toes
Fatigue
Sciatic Pain
Ear Ache & Pain - random
Congestion (Nose - this has been ongoing and has lightened up but I still have it)

Well, too tired to write anymore.  Still doing Level 3 of Buhner herbs right now plus the HH2. 

Being a Mom with Lyme Disease and other Musings

I've often wanted to go read a blog or website devoted to moms who have lyme disease (not necessarily their kids having lyme disease).  I find that there are situations that are unique to being a mom and having lyme disease while raising kids.  Like playdates - how you schedule them when you never know how you will be feeling or if you had enough energy to clean your house.  Or talking to friends.  I feel an anxiety about getting past everyday conversations with other moms because when I go past the surface, my world is all lyme related - all my thoughts, hopes and dreams (well, ALL, is a bit dramatic but many) hinge on getting better from Lyme.  And I assume if I open up my mouth and talk about all that, most people, living normal lives, would find me awfully hard to relate to.  They may like me, but people want to be friends with whom they can connect, so most of the time I keep my mouth shut and keep the relationships at the surface level.  It is uncomfortable feeling, but maybe it is more comfortable than talking about Lyme and having them realize that I am obsessed with it (not really, but just obsessed with getting better).  Yes, there are other things to talk about, kids and their activities, etc but I always feel like no one really knows the real me because the life I am now living is not reflective of the person that I truly am inside.  Right now I am overweight, don't exercise, keep mostly to myself and hang out with my family and my husband.  Not at all the hiking, running, biking, gardening, volunteering, social active person that I was pre-Lyme.  Not to mention all the nervousness, anxiety, depression that I have experienced (and the trauma of terrible Babesia nightmares and terrors that traumatized me when I first came down with lyme.  That is not stuff I open up to ANYBODY about other than my husband and my mom.  I didn't have ANY of those issues at all before Lyme Disease and I just never totally feel comfortable in my own skin with those things. Ugh!!!)  Anyways, these are the things I feel on a daily basis.  I am uncomfortable having other moms over to my house on playdates because when we really get to talking, I am afraid of becoming close friends, because I feel like they can never really know the real me because of the things that I won't ever share - all the Lyme stuff.  I know that stuff isn't me - but it is what I am going through - and most moms can't relate at all unless they have Lyme to - and I am in an area where NO ONE has Lyme so I just kind of keep to myself.  Just putting it out there.  I am sure some other moms feel the same way.  Read a book by a woman with Lyme Disease and she talked about all her friends seemed to fade away when she got Lyme.  I can't tell you how many times I have read it on the web that people lose their friends when they have Lyme Disease.  Doctors who treat Lyme say it is one of the most heartbreaking things about treating people with Lyme because friends and family understand cancer and have empathy and compassion for those with it but they don't understand Lyme Disease and what it entails.  I look forward to a better future, where money is invested into drugs that stop Lyme in its tracks - not necessarily antibiotics - but kind of like the drugs they have come up with to treat AIDS patients that stop the virus from being able to replicate itself.  Wouldn't that be fantastic?  I look forward to more research being done on Chronic Lyme.  I look forward to the controversy ending and for everyone working together to come up with treatment for people with Chronic Lyme other than saying "Deal" and take all these crazy meds that screw you up more than they help you.  I look forward to a time when Chronic Lyme Patients have a proven treatment plan that is used world wide and is effective. I remember reading about a study in which the subjects were given a long-acting dose of Doxycycline which kept the blood levels of the medication high for an entire month.  And then other subjects were given the Doxycycline every day at certain times.  Those given the long-acting Doxy had 100% success in eliminating the Lyme organisim, where those given Doxy every day at a certain time, didn't fair as well.  I don't remember the study exactly but I remember thinking - I wish they moved forward to manufacture a long-acting Doxy pill/shot for every single person who came down with Lyme Disease so that it would eliminate it right from the get-go.  While I stay quiet, silently suffer because I don't want the extra stress of being misunderstood or judged, I say a prayer, for the doctors who treat the lyme, the pharmaceutical companies that make medicines and research new ones to combat the Lyme, and for the scientists who are studying Chronic Lyme - that they find truth, and that they come up with cures for all those of us suffering silently around the world.  And lastly, give.  Give to the organizations that are researching because research is what is going to change all the doctors minds who currently don't believe or don't understand Chronic Lyme.

Weekend Away

Oh I am so glad I took a weekend away.  We took the kids whale watching and hiked through an ancient cave that was huge!  We spent nights by the fire and did a wine tasting (just tiny sips for me!) and it was just what I needed to take my mind of all the situations at the kids school that had me down.  The down side is that I didn't take my vitamins for 3 nights and only took Level 2 of the Buhner Herbs for 3 days along with the HH2.  Today I experience nervousness in the afternoon and it majorly increased when I took the herbs with the HH2.  It has died down now.  I had a great weekend.  And with the nervousness - I just tell myself that this isn't real and to work through it which I did - cleaned the house, did laundry, read to my daughter, did some math stuff with my son.  That's all for now.

Nerves that come and go and Mama Drama

So for the past 5 days or so, I have not had morning nervousness every morning until 12 or 1 in the afternoon so that is a huge sigh of relief.  But today I awoke with it so we will just see how it goes.  I haven't changed anything and I am not doing anything different so we shall see.  Right now I am charting all my symptoms to see if I can identify cycles.  It seems that my massive morning nervousness for a month straight (nice feeling, huh?) is most likely Bartonella.  I had nervousness in the morning 4 days ago.  I am hoping as I write down every symptoms (I have letter codes for each symptom that I write on a chart) I will be able to see if it is Babesia, Bartonella or Lyme that is causing the Herx.  After adding in the HH2 the morning nervousness seem to die down but it could be merely coincedental.

Even thought I haven't had morning nervousness - I have had a heck of a week.  And not so much in a good way.  We are moving next year and my daughter has been doing playdates back and forth with a girl and when I told her mom that we are moving at the end of the year - the playdates seem to halt a bit.  I understood it.  Then she began scheduling playdates again, which were between her daughter and mine but right at the last minute, she would add in another girl (which is fine, but different that what she had been doing) and it seems my daughter turned into the third wheel.  Her daughter wanted to come do a playdate at our house, and we scheduled it, and she changed her plans, and scheduled it again, and she changed her plans so that her daughter didn't come to our house but instead scheduled it at a park.  I don't know. I  just feel pretty weird about it all.  Especially because this lady knew just how much my daughter wanted to have her daughter to our house and also because her daughter really wanted to come to our house.  But then the next day she offers to drive my daughter to a party.  I don't know - I feel a little hurt and confused.  Truth be told, I have been a bit hesitant to have playdates at our house, just because all of our toys are in storage in another country and we have only a few toys here and maybe, she picked up on that and that is why she was avoiding having her daughter come to my house.  I also am hesitant because of the Lyme never knowing how I am going to feel and if I am going to be feeling well enough to have a conversation with the mom should she choose to stay while her daughter plays.  And Lyme Disease and having the house clean. Etc. Etc. Etc.  I don't know.    I think I just need to get over it and realize people have their reaons and I may never understand. I just have to understand it comes from her concern of wanting her daughter to have friends next year and not just play with my daughter, which I totally get, but it just ends up feeling weird.   On top of that, the kids who my son who has been playing with every day decided not to play with him anymore and someone told my oldest son he had "leprosy".  This is a kid from our church and whose mom works at the school.  It has been a TOUGH week.  So we are going away for the weekend, just so I can clear my head of all the hurts of this past week and get some fresh, beautiful air and get the kids and me away from the drama.  We had a great last quarter of school - with NO drama and the kids playing well with everybody and I don't know about you, but it hurts me when my kids hurt :-(.

Over it. I think.

Well, the nervousness (fear, morning anxiety, whatever you call it) went away for 3 days!  Yes, after 26 days of constant morning fear and anxiety it died down.  I didn't know if I would see the day.  So that is good news.  However, today I had nervousness hit my stomach at about 1:30 in the afternoon so that is different.  I also have a white painful dot at the back of my throat that looks flush with the rest of my throat but hurts.  Looked it up.  Could be a "throat ulcer" kind of like a canker sore.  I was hoping, my nervous free days would last a bit longer.  However, 4 days ago I added in HH2 so we shall see how that goes.  Am getting a yeast infection as well.  Fun stuff.

Current Symptoms:
White painful spot at back of throat
Blurred vision during the day today - I usually get blurred vision at night if I get it all so during the day is different.  I found it hard to focus on words as I was trying to read them.  I think the blurred vision has to do with neurotoxins.
Nervousness - had a 3 day break after 26 days and felt it again today
Neck Soreness - Tingling
Tingling in my left Foot
Sore Soles of Feet

Symptoms

I just wanted to update my current symptoms.  I have been taking the Green Dragon LB Core Protocol for 3 months now (minus 1.5 weeks where I ran out).  Initially, I felt worse on it, then much better, and then I got the flu, and now I just feel worse on it.  I am not stopping though. I think this is a journey that takes a LOT of perserverance!  So right now I am at Level 3 of Buhner Herbs 9 caps of the LB Core Protocol 3x a day.   I also am taking Nattokinase with it. 

Current Symptoms I am having:
Morning Anxiety/Fear (ugh!)
Diarrhea
Vibrations
Shooting Pains in Joints (a little)
Headaches (moderate)
Head Congestion
Numbness (a little)

All these symptoms are ones that I have had in the past that I haven't had in a long time until I began treating with the LB Core Protocol.  I think it is because it is working that I am having these symptoms.  Taking all the vitamins and supplements in the past is what has kept my head above water - and what continues to keep my symptoms from being absolutely horrible.

Encourage Me Again

And God spoke this song to my heart - It just came first thing as I woke up in the morning.  I haven't heard the song in years - and all that I remembered was 'Take my hand and walk" so I typed it in and listened.  Tears streamed down my face and still do when I listen to this song - God is so strongly speaking to me right now.  I am afraid of this Lyme Journey - especially when symptoms get worse before they get better.  I copied the lyrics and the link is if you would like to listen to the song.

Take My Hand Song by The Kry
http://www.youtube.com/watch?v=mwwnIr5yZ7E

Take My Hand Lyrics by The Kry:

I know there are times
your dreams turn to dust
you wonder as you cry
why it has to hurt so much
give Me all your sadness
someday you will know the reason why
wih a child-like heart
simply put your hope in Me


Chorus:
take My hand and walk where I lead
keep your eyes on Me alone
don't you say why were the old days' better
just because you're scared of the unknown
take My hand and walk


don't live in the past
cause yesterday's gone
wishing memories would last
you're afraid to carry on
you don't know what's comin'
but you know the one who holds tomorrow
I will be your guide
take you through the night
if you keep your eyes on Me


take My hand and walk where I lead
keep your eyes on me alone
don't you say why were the old days better
just because you're scared of the unknown
take My hand and walk where I lead
you will never be alone
faith is to be sure of what you hope for
and the evidence of things unseen
so take My hand and walk


just like a child
holding daddy's hand
don't let go of mine
you know you can't stand on your own

A Song for the Soul

I must have really, really needed encouragement.  I really, really did need encouragment.  This journey is a hard one because I only share the depths of what I go through with my husband and no one else.  My outlet is this journal.  Having Lyme Disease is a heavy burden and I am not one to pour out my burdens on others when they really don't have the capacity of understanding or caring because they have never been through something like what I have gone through.  Also, I have only lived here for 6 months, so I just don't have the depth of friendship with people here where I can share and I really don't want to weird people out.  Before I had Lyme, I had pre-conceived ideas about people with problems like I now find myself with and I just don't want to have to deal with the stress of others judgements of me on top of the stress of living with Lyme.  So yes, I am alone and I feel alone and so for me - when God reaches out to me - it is like a friend who reaches out to you and understands you and gets you and is pulling you through the darkness when you can't see the light.  All that to say is that in the midst of the depression and hopelessness I found myself in when I restarted the herbs - A song popped into my head.  It was The River by Garth Brooks and here are the Lyrics.

You know a dream is like a river
Ever changin' as it flows
And a dreamer's just a vessel
That must follow where it goes
Trying to learn from what's behind you
And never knowing what's in store
Makes each day a constant battle
Just to stay between the shores And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try So I will sail my vessel
'Til the river runs dry
Too many times we stand aside
And let the waters slip away
'Til what we put off 'til tomorrow
It has now become today
So don't you sit upon the shoreline
And say you're satisfied
Choose to chance the rapids
And dare to dance that tide And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry
There's bound to be rough waters
And I know I'll tke some falls
With the good Lord as my captain
I can make it through them all And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry
Lord, I will sail my vessel
'Til the river runs dry

I put the phrases in BOLD that spoke to my heart.  A tune will just come to my heart that I haven't heard in years, and I will hum it but I don't know the words to the song.  So I went to the internet and typed in "You know a dream is like a river" by Garth Brooks because I knew it was by him and I read the lyrics.  I just felt like God was speaking to my heart - saying it is going to be hard, but you have to go through it - you have to try - because if you never try to beat the Lyme Disease - then you will never reach the destination of being healed.  So keep trying, go through the hard times, because I am your Captain, and I am leading you in the right direction, even though everything feels worse.  Trust in ME!!!

This was powerful becaues this came to me in the midst of the depression.  God has spoken one other song to me - 5 years ago - when I would close my eyes and couldn't put the thoughts together in my head, when everything was going wrong in my body and I didn't know what was going on - It was "Got my mind set on you" by George Harrison.  In that song - the lyrics says that it is going to take patience, time and money to do it right and that if I set my mind, that I can do it.  Well little did I know how TRUE that has been and continues to be!!!

The Herx Continues....

I don't want to write. But I will.  I will write that every morning that I wake up I generally have a feeling of nervousness in my stomach.  It lasts throughout the day usually until about 1pm and then it fades away and the nights are good.  I don't know exactly what is causing it.  I have been taking Level 3 Buhner Herbs for several weeks now.  There was a period of 1.5 weeks where I didn't take any herbs, sprays or vitamins because I was down and out with the flu AND had run out of herbs because I had delayed ordering them thinking they were messing with my hormones.  By the time I realized it was just a herx and not my hormones going crazy, I ordered them, but still had to wait for them to get to me which set me back those 1.5 weeks.  That herx passed and I had a period of about 8 days where I felt much better. 

Anyways, I like to write how I got through something but I haven't exactly figured out 'how" to get through this.  I have found a couple things that have helped but nothing has eradicated the nervousness I feel in the AM and not the PM.  Taking Kavinace (GABA+ Taurine in a bio-available compliation) and Ashwaganda (which reduces cortisol which is highest in the morning; and diminishes tyrosine in the body).  These have definately helped.

What I hope?  I hope this is just an ongoing herx.  I haven't written since my last post entitled "Herx" but I have been continuing the Herx.  In fact, exactly 72 hours after I began the herbs - and herxed - I have continued to herx I think.  At least I think the nervousness may be part of an ongoing herx.  I hope.  I should add, that after the initial 72 hour herx - I felt deep, deep depression.  Utter hopelessness, cyring and feeling like I was never going to get better - that I would have this disease forever, that nothing was going to help.  I have to say I don't often feel like that - if ever.  Thankfully those depressing feelings passed but that was really, really hard.  I took a bath, and after the bath I felt much better and the depression died down but then it came back.  I took a coffee enema and it seemed to help - I think from that day forward the depression lifted so I think it was something to do with a bunch of neurotoxins in my gut.  During this time, at night, when I would try to read, my vision would blur and I would have a hard time distinguishing the black letters.  I would have to look away from the text for a minute or so and then I would look back at the text and be able to read a sentance or two.

Right now, my head is congested, I have a headache, I am getting a few arthritic type pains in my fingers, my feet are tender on the bottom (and have been for a few weeks since the herbs).  I have had the congestion for the past two weeks as well but not the headache as much - just a few on and off so I don't know if this is related to the Lyme or just a cold because my husband has the same headache as well.

So I journey on.  If I knew this was  very long but passing herx then I would be a little more encouraged.  But until I know that...I still wonder...is it a herx?

Herx

So I ran out of Lyme herbs right before I got the flu so I went one and a half weeks without herbs while having and recovering from the flu.  I am totally frustrated that treatment stopped for one and a half weeks because it is another setback.  Well, I had to reset my neurotranmsitters after a week of the flu as my tyrosine was way down but was alleviated by taking more of it.  I got that all sorted out and was feeling better so 3 days ago (72 hours to be exact) I re-started the herbs as my order came in.  So right now it is 72 hours later and I have breathless nervous feelings.  Yesterday I took a two hour nap in the middle of the day and last night I stayed up until 1am and my feet were really sore.  I am hoping this is a herx because when I started the herbs a couple of months ago, I had a day of nervous anxiety at the 72 hour point that went away after one day.  I sure hope that today offers the same experience.

The Flu, Anxiety and More Tyrosine

So the whole week that I had the flu, I didn't take vitamins or sprays or herbs. I should have and I am so frustrated at myself for not but I just layed down all day long for a week. I was so sick and the kids were all so sick. I am ashamed to write that I didn't take the herbs, but truth be told, I had run out of them and was waiting for them to come in the mail. I delayed ordering the herbs because I thought I was having a reaction to andrographis but after taking them a 2nd month, I realized that my presumed reaction was most likely Lyme die-off. So now I just got the herbs and am re-started them. At the end of the week of the flu where I didn't take my herbs, sprays and vitamins, I got a near panic attack and felt the anxiety coming on. I got these feelings 2 months ago and it was real bad so I thought because I was really anxious I should take more 5htp and so I did - but things seemed to get much worse. I finally figured out to take the tyrosine and not the 5htp and when I did I began to feel better. It took a few days but the anxiety went way down. Usually I have just taken a balanced amount of both (for the past 2 years) and it has been sufficient but since treating the Lyme disease there seems to be a increased need for the tyrosine. I guess this makes sense if the bacteria that are acting on the phenylaline-tyrosine pathway are getting hit with the treatments and so my levels are lowering as the bacteria are fighting back. I wrote about this in another post but I have high bacterial organic acid markers on this pathway. Anyways, bottom line, I took a lot of tyrosine and not so much 5-HTP and it helped to alleviate the fearful panic and hopeless feelings of "will I ever get better?" and "what if I treat and still have these problems forever?". I should add I have had vibrations throughout my body off and on this weeks as well as tingling in my neck.

The Flu and 101.6

So, on Sunday this week my 5 year old slept all day, then on Monday night had a fever of 102.5, on Tuesday it was 103.3 and I don't think it went much past that.  Monday night I began to feel really weak and get pain behind my eyes and get chilly and then spent the night tossing and turning.  Next day every bone in my body hurt, my eyes hurt, my head hurt, you know the routine.  Now everyone in the family (all four of my kids and myself) and down and out with the flu.  The interesting thing is, my temperature got up to 101.6 which is officially the highest temperature that I have had in 4 years since contracting Lyme Disease.  Why is this of signifigance to me?  Well, somewhere I have read that bartonella lowers fevers so every time I have gotten sick with the flu or strep throat in the past 4 years, my fever only got up to a whopping 98.6 - normal!  Which was up from about 97.6 my daily temp.  Well now that I have been taking Buhner's herbs, I get this flu and my temp goes up to 101.6 - the highest it has ever been in years which leads me to believe that the herbs are really helping my immune system fight off disease (which, of course, is exactly what they should be doing).  I am really excited about this, even though, today, 5 days later, I am still feeling pretty yucky with an intense and painful sore throat, cough, headache, chills etc. 

Biofilms and 2.5 years of Lyme Disease

 "Spirochetes can live 8 months in their biofilm without food, and if they fed, they can live 2.5 years in their biofilm form. Just because they didn’t leave their biofilm home does not mean they are dead. They are just waiting for the perfect time to strike, which may be in 2 years".

Just read this. This explains to me why the success stories that I have read, that have encouraged me are of patients that treated their Lyme Disease for 2 years and 8 months.  That would be enough to kill all the lyme spirochetes that were hiding out in the biofilm.  Wow.  I guess it just gives me the faith to keep on keeping on for a few years.  That said, co-infections such as babesia, bartonella and protomyxzoa rheumatica would need to be treated concurrantly with the Lyme Treatment.  It is a long road.  A marathon not a sprint.

Speaking of marathons and not sprints - that is my ultimate goal if I conquer Lyme Disease.  I ran to keep in shape before I came down with Lyme Disease.  Exercise is such a luxury now.  I just can't do it without developing massive nervousness and anxiety that occurs 3.5 weeks after I start to exercise.  Which now I have figured out is probobly a herx.  That when my blood heats up and my circulation increases - the spirochetes are being killed.  The herx is so intense though I haven't been able to handle it so I just avoid that type of exercise (jogging).  It is unfortunate because I am way overweight but I have four kids and I need to take the long, slow and steady road to health so I can be there for them as well as get better.  I hope that if I kill off a good portion of the bacterial load that my herxing to exercise will be much less and over time I will be able to exercise more and more. 

Now just to clarify - I don't ever intend to run a real 26.2 mile marathon.  No way.  Back in the height of my health - the most I ever ran was 10 miles and I think stopping for orange juice half way super powered me up for the last 5 miles.  I think the most I would have ever ran in those days would be a half-marathon or 13.1 miles.  But today, I think that when I recover from Lyme Disease, or have it under control, I will only ever run a 10K out of respect for my body and everything it has ever gone through in fighting the disease.  That is my hope anyway.  I hope to run a 10K and not go into a major herx 3 weeks later!  I would hope to run a few miles every few days for the rest of my life.  And by using the word 'run' what I actually mean is 'jog'!

Zhang Herbs

Added in Coptis, HH2 and Circulation P Capsules yesterday from the Zhang protocol which is to be taken 6-12 months.  The first side effect I noticed was that my toes that had been cold for days actually didn't feel like they were freezing (our weather here has gotten much colder) .  Today, I am feeling a really low level of nervousness in my tummy that comes and goes so I am not sure what to make of that just quite yet (if it is due to the Zhang herbs or due to being in the part of the Lyme cycle when die-off occurs).  Other than that, I have been feeling really good this past week.

Encouragement: Chronic Lyme Recovery Story

Here is a link to a news article about a University of Connecticut professor who after 22 years of unknown Lyme disease, recovers after 9 months of IV antibiotics (not antibodies as the writer/editor didn't catch their error). http://www.countytimes.com/articles/2012/06/20/life/doc4fe24326b44bc141496300.txt

Chills, Fatigue and Knee Aches and Lumps

Two nights ago I had chills except I didn't really know I was having them. I just thought the house was extremely cold and when I went to bed I had a wool sweater on and socks and I made my husband sleep right next to me so I could feed off his body heat to keep me warm. I kept tossing and turning for 2 hours trying to get warm. The next morning I felt pretty warm. The thing is, ever since I have had Lyme Disease, I have never had a fever. Not once. When I was really sick with strep throat and massive body aches and pain and chills a year or so ago, my temperature rose to 98.6 at my sickest. Anyways, back to my story of having the chills the other night - after waking up feeling hot, a little later in the day my knees were really sore even though I hadn't been exercising. And this last night I went to bed without feeling really cold and this morning my knees didn't hurt at all. I also have two small pencil eraser size lumps as well that are painful and popped up out of no where. Have had these before but not often. Had a big one in my armpit that scared me but went to the doctor and they are not cancer or anything. Just sluggish lymph nodes, I think. Anyways, so now I realize it was some Lyme-related thing I was having that passed. All month long I have been waiting for the depression-anxiety-massive worry symptoms to return that I had last month and haven't had any of them at all really. I have just had these symptoms and then a few other things like spelling dumb d-u-m-e (what a perfect word to spell wrong!!) and telling my husband to get his fingers off me when it was actually his toes that were bugging me. So I guess word mix-up and dumb blonde moments are part of my Lyme symptoms this month. The past few days I have missed exits when driving and not gotten in the right turn lanes when I needed to, etc. This would be normal if I was driving to a new place but I have been driving this route for the past 5 months so it's a bit weird. Oh and I can't forget to mention that I have been really fatigued the past few days as well. Not to the point of sleeping during the day but just really tired. Oh, and I had nausea one morning as well a few days ago as well. And lastly, I have had tingling and vibrations daily for the past few weeks. Other than that I am still continuing at Level 3 of the Buhner herbs. There are two more levels to increase too but after last months "hell week" of emotional symptoms, I held off ramping up quiteyet. I will soon though. I just want to get through this next lyme cycle and feel like I understand and have a handle on it before ramping up though. One more thing, I started a all-natural low-fat vegetarian diet on Wednesday. The low-fat is to help break up the bio-films and the diet is to lose the weight I have gained with Lyme. Will see how this goes. By the way, I am still eating nuts as I know my body needs some fat and protein as well as I am taking Vitamin B-12 which is the vitamin that has to be derived from a meat source that vegetarians are often deficient in if they don't supplement which can in turn cause them to become ill if they don't get. At least that is what I think is accurate if I recall correctly from my studies.

One last thing I should update is an improvement I continue to have and that is my foot pain has gone WAY down!  For the past 4 years I have not been able to walk on my own feet without a really cushy flip-flop on because my feet have hurt so bad.  Since taking the herbs, my foot pain has gone WAY, WAY down!!  I am able to walk barefoot around the house so I am very happy about that.  The symptoms that I have been having that look they are not an improvement (fatigue, chills, nausea, depression, anxiety) are actually really good signs that the herbs are killing off the spirochetes.  The thing that gives me the courage to continue on is that the symptoms are passing.  They come and go which means that I am moving in the right direction (if thre were no symptoms that are coming and going it would mean the herbs wouldn't be working). 

Buhner Herbs - Week 4 Update

Okay. Well, I am actually staying at the Week dosage for Buhners herbs. I have to say that the it was really hard for me a week and a half ago when I was in my 4th and 5th weeks of my treatment and I didn't want to ramp up to the 4th level of his herbs quite yet. I did a little more reading and research (a favorite activity of mine) and learned that one of the herbs (andrographis) in the protocol inhibits progesterone. This could be a reason why it was SO hard for me during the weeks around and after my period. I feel SO much better now. I think it could be a combination of the Lyme Disease cycle as well as my progesterone being to low that made it so hard. I have slightly low progesterone levels to begin with so I very much think this is a possibility. I have about a week and a half's amount of the combined herbal protocol capsules left and I am going to use them up because they are so expensive. After that I am going to only use the other herbs. Fortunately, the updated Buhner protocol no longer includes Andrographis so I will still be targeting Lyme effectively with the other herbs. Those herbs are Japanese Knotweed, Cats Claw, and Eleuthero. It will be interesting to see how I go with just these herbs minus the Andrographis. I also wanted to write that even after I wrote my last post (that I was doing well), that I still struggled with anxiety in the morning on and off the next few days. I feel so much better now though. A few other things I have learned is that charcoal may absorb tyrosine which could attribute to my having morning anxiety. I did take activated charcoal a few times during when I was feeling really bad. I know it is good for mopping up toxins and I would continue to use it on a minimal as needed basis but always be aware that I may need a bit more tyrosine spray to balance it out. It also could be completely unrelated to the charcoal but instead to the Lyme disease and co-infections. Time and continuing on this journey will hopefully help me to sort this all out.

Feeling Better

Well getting a little rest goes a long way. No kids to get dressed, fed, organized and to school on time really helps too. The logistics of getting the kids out the door (all four of them) and to school on time, makes this Lyme neurotoxin induced hurting brain of mine struggle big time. So a good nights sleep has really helped. Went to bed early and woke up 2 hours later than normal and I even woke up with a good dream that made me feel so happy when I woke up. I did a little research yesterday and found that Lyme symptoms flare every 3-5 weeks which made me feel a little more assured that what I have been going through this past week was actually a Lyme flare and not an ongoing symptom. The fact that I am feeling a lot better today seems to indicate that as well. I learned that when we are stressed (which I have been really stressed about some stuff at my kids school) that our cortisol goes up and when this happens it shuts the immune system down which causes even stronger Lyme symptoms as it begins to invade our body even more. Even though I knew this information in bits and pieces, I had never connected the dots as to why Lyme gets worse in times of stress. In light of this knowledge, I am ordering more Ashwaganda from the US and shipping it here. Ashwaganda reduces cortisol levels by 30%. I used it a month or so ago for the first time and it really did help to reduce stress. When cortisol levels go down, our adrenaline, fight or flight hormone and norepinephrine levels equalize. I had my neurotransmitters tested while I was going through this intense period of stress and when I received my neurotransmitter testing results back they indicated that my norepinephrine levels had tanked which was causing me to feel very anxious. The stress was putting my neurotransmitters in the gutter so Ashwaganda helped to shut down the stress response and turn down the cortisol that was doing this. Anyways, I know that is a lot of information, but reading it and knowing it now is a source of great encouragement to me.

Still not doing well

So my period ended yesterday. Today I had nervousness and a feeling of fear when I woke up. I was getting my four kids ready for school and they were all playing with Nerf guns and being quite loud. I found it so hard to concentrate. Even just their normal talking caused me to not be able to concentrate. I have been misplaced my keys several times this past week, overslept the alarm and yesterday I put my foot in my outh and mistook a little boy for a little girl. I probobly put my foot in my mouth because I was feeling all this underlying internal stress, anxiety and depression and wasn't able to think straight during the conversation. Right now I wonder when these feelings will end. They interrupt the rhythm of my life so much. It makes me not want to take any Lyme treatments, not that I would stop but that is how I feel. I wonder if this is a four week symptom flare that Dr. b speaks of in his treatment guidelines or if it is just something else that is related to my period but not to the Lyme. I have no idea. Fact is, I never had this before having Lyme. It still leaves me wondering, and hoping that it is a Lyme flare but worrying that it isn't a flare but just a symptom that will be ongoing the whole treatment. I don't feel like I could handle life if I had to feel like this everyday for the next 2+ years while treating this disease. Well, I actually could handle it if I didn't have to live a normal life and if I had someone taking care of me instead of me taking care of four children. So I guess it boils down to hoping this is the four week Lyme flare and worrying that it isn't the flare but an ongoing symptom because this is actually my fifth week of treatment. Side Note: I have had diarrhea all week long in addition to the worry/depression.

Depressed

Well this post is hard to write because I like to write more encouraging posts and don't like to focus on the negative. However this is the journey I am on and right now I am experiencing depression. I have had it on and off the past week and it is SO hard. So many things are hurting my feelings right now. A kid kicked my son in the face unprovoked. A friend who had been inviting my daughter over for playdates stopped after I accidentally forgot about one playdates. I also haven't arranged playdates because I never know how I am going to feel with this Lyme stuff but that may come off as disinterest. Today I just had a hard time picking myself up to do or accomplish anything. I just kept thinking negative things about myself all day and about my life. I am hoping this is some sort of passing herx and that tomorrow I will wake up and it will all be gone. It hurts so much to feel depressed inside. I really, really hate it. So that is what I am going through now. I should also say that I am on day 3 of my monthly cycle as well and I am sure that and the Lyme herbs have ALOT to do with how I am feeling.

Week 3 - Lyme Buhner Protocol

Okay.  So I seem to be doing okay.  For the past three days I was feeling like it was hard to concentrate and that I kept worrying about every little thing.  I took a couple activated charcoal tablets and it seemed to clear my brain so maybe it was the lyme toxins that were causing it.  Backtracking, I began to increase my dose to 3 caps of each herb, 3x a day.  Next week if all is well, it will be 4 caps 3x a day and then finally 4caps 4x a day and then I will need to remain at this dose for 60 days and possibly longer.  I will be staying on the protocol for 12 months or more (at least that is what I plan to do).  It is recommended for 8-12 months or until symptoms clear.

Week 2 of Buhner Protocol Update

Well, I am halfway through my second week of the Buhner Lyme Protocol. Last week I experienced a lot of fatigue so this week I added in a little more of the Siberian Eleuthero which he recommends for energy and I haven't had much fatigue at all like last week. I upped my dose this week and the day after I began getting a strong headache with pressure behind the eyes. It continued on for a 2nd day and was accompanied by word retrieval issues as well. The next day these symptoms went away so I am assuming this was a small Herxiemer reaction to my increasing the dosage. On the upside, my feet seem to be getting less and less tender, meaning that when I walk they don't hurt as bad and when I wake up in the morning, they aren't as incredibly sore as they have been. I attribute this to the Japanese Knotweed which is supposed to dramatically reduce the inflammation that Lyme Disease and it's co-infections produce.

Core Vitamin Protocol (and specific symptoms they alleviated)

1) B-Complex - Numbness, Tingling, Adrenal Glands 2) Zinc Piconolate (90mg) - Paranoia, Fear 3) Magnesium (not oxide) - Sciatic Nerve Pain, Mood Swings, Twitches, Energy, Confusion 4) Carlson ACES+Zinc - Energy (Coq10 could synergistically help with energy in conjunction with ACES) 5) NuMedica Mineralplex - Energy 6) Gingko Biloba - Memory 7) 5-HTP - Depression 8) Tyrosine - Anxiety (Tyrosine and 5HTP have to be in balance with each other and my doctor oversees this) 9) Vitamin C - Inflammation, Adrenals When I write that these supplements have helped me I cannot overemphasize just HOW much they truly, truly have helped me. I would be jacked up on a million meds and not able to parent if I did not take these things. They have given me my life back, not 100%, but I am a million times better than I was. I am just now fighting the actual bugs that took me down and depleted my body of the vital nutrients that I so desperately needed to be physically and mentally healthy.

Update: 1 week after adding Buhner Herbs

So, I added in Stephan Buhner's Lyme Protocol last Sunday.  It has Japanese Knotweed, Andrographis, and Cats Claw as well as Dandelion (for liver detox) and Smilax (to ease herxeimer reactions).  The first night after I took it I had insomnia which I attribute to the Japanese Knotweed because 1) I have taken Japanese Knotweed by itself before (from another brand) and had this reaction and 2) because I have been taking all the other herbs previous to adding Japanese Knotweed and never had this reaction.  I was tossing and turning and just couldn't get comfortable.  Prior to going to bed, I felt like I had restless leg syndrome but all through out by body where it just felt weird all over and like you wanted to move your body to get rid of the feeling but just couldn't. 

I have continued taking all the herbs this week and I am happy to say I only had insomnia that first night!  I still have a light restless leg syndrome type feeling at times but not as strong.  I have to say the biggest symptom or reaction I am having right now from the herbs is FATIGUE!  The first half of the week after taking the herbs, I found myself going to bed earlier and earlier with a strong feeling of tiredness before I drug myself to bed.  I didn't think this was a bad thing - I thought it was great considering I usually end up staying up too late on most nights.  The past few days however, I have been really, really tired in the afternoon and today I just conked out for a few hours on a Saturday when I would have rather been doing a fun activity with the family.  I am feeling tired alot.  I just signed my kids up for after school activities so I hope that I am not super tired all time because it seems to hit in the afternoon the worst.

Today I am supposed to up the dosage.  The way it works is there is essentially 4 dosage levels and you ramp up each week assuming that you are feeling okay.  I'm not sure if I am ready to ramp up or not considering the fatigue levels. 

Pretty Sure it was a Herx

Well, I wrote that I added in Artemesinin on Friday of last week but I actually didn't add it in until Saturday.  I was intending to add it in but never got around to it on Friday so Saturday it was.  So today is Saturday so I have completed 8 days of Artemesinin and tomorrow I am going to add in Green Dragon Botanicals LB Core Protocol which are capsules which contain Japanese Knotweed, Adrographis, Cats Claw as well as Smilax and Dandelion.  These herbs are in accordance with the writing and resarch of Stephan Buhner and his Lyme Protocol.  I am already taking some Andrographis and Cat's Claw in my Lyme Support drops as well as Smilax drops as well.  The last time I took Japanese Knotweed I had insomnia from it big time.  But I have read that it may have been that particular brand of Japanese Knotweed which causes it so I am going to give it a go once again.

So my post title "Pretty Sure it was a Herx" is in reference to the massive nervous feelings and anxiety I had a few days back.  Tuesday to be specific.  Interestingly enough, this was 72 hours after I added in the Artemesinin and in reading Stephan Buhner's book on herbs, he mentions that Artemesinin may have anti-spirochetal properties in addition to it's anti-babesia properties.  This could explain why my symptoms reached fever pitch at the 72 hour mark which would be the type that the Lyme bacteria would be lysed as they don't get killed until 72 hours into treatment.  I had muscle aches, brain fog, word retrieval issues, nervousness that all came around that time - oh and a terrible, terrible, terrible headache.  But the worst for me is the nervousness.  It feels like you are preparing to speak in front of 1000 people but you are not at all.  In fact there is no reason on earth why you would feel nervous, and your day has been great, and then all of a sudden you feel it.  Oh, do I hate, HATE that feeling.  Anyways, haven't had anxiety since Tuesday so I am pretty sure that was a Herx reaction.  So thankful I don't have that feeling. Phew!

Lastly, I am excited to start Buhner's herbs.  I am starting at the lowest dose and I will ramp up slowly.  I am hoping I don't have insomnia all night from the Japanese Knotweed.  Not that that would be bad because it would be probobly killing the spirochetes but I am still hoping I don't have that reaction.  Ciao for now :-)!

Day 6 of Artemesinin

So, I am on Day 6 of Art(emsinin). I actually skipped yesterday and I will tell you why. I skipped because I had a really busy day yesterday and a feeling of nervousness all day long. By the time I got home it was late so I decided to take the herbs in the morning. The result of not taking any herbs yesterday is that I didn't have any feelings of nervousness today. I just took all the herbs a couple of hours ago and have a really strong headache right now. Right after taking the herbs I was really nauseous so I layed down a while until that passed. Kids just watched tv while I did so. I had the headache before I took the herbs though but it is worse now. Just took two ibuprofen so we will see if that helps.

Artemesinn Update

So,I added Artemesinin a few days ago. Yesterday and today my muscles felt all sore, as if I had run a few miles and was recovering from it. Specifically my quads and my back muscles have been sore. Then around 4pm I began to have anxiety. Just a feeling of nervousness that comes out of no where and relates to nothing that I am thinking. Today, I didn't have any anxiety (or nervous energy as I should call it) all day and then come 3:30, I felt it once again in my stomach. I can't even express with words how much I hate the feeling. If I could never have that feeling again I would be such a happy woman. I should add the past 2 days, I have taken all my herbs at the same time which has been bout 5pm. I took all 3 HH2mcapsukes, all 3 artemesinin, and all my drops at the same time. Once I add in the Buhner herbal capsules I will need to move to taking the capsules 3-4x a day because there are so many that there is no way I could take them all at once. Ideally, I don't want to take them all at once like I have been doing but my days have been so busy that i haven't been home to take them in divided doses. At this moment, which is about an hour after I took all the herbs, I have a big headache that hurts behind the eyes as well as the left side of my head. So symptoms after adding in the artemesinin have been 1) Nervousness/Anxiety 2) Large Muscle Fatigue and 3) major headache. I guess this might confirm the presence of Babesia as my testing indicated I had.

Add in Artemesinin Today

Okay.  Well, I am on Day 4 of HH2 and the headache is gone as well as the light, light nausea.  I really didn't feel that sick at all compared to the last time I started this protocol.  Today I will be adding in the Artemsinin and do that for about a week before I add in Buhner's Herbal Protocol.

Day 2 of HH2

So, I still have a headache.  The strong, strong, strong kind.  But I just took 2 acetaminaphen and that seemed to help.  I took a look back to when I initially started my treatment in August 2011 and noted that on day 3 of Teasel, Smilax and the Lyme Support Formula (drops) that I had nausea and a "stunning" headache as I put it.  I also had weakness to the point where I couldn't talk to people outside of whisper.  I think I have a much lighter version of all of this this time around.  I have taken naps the past days, I have a had a headache the past two and when I bend over, my stomach feels nautious.  But it is nothing like I had when I first started taking the herbs in August.  I remember that.  I was on the couch, with a bowl in hand, completely weakened and sick and I am not there.  Can't wait to add in Stephan Buhner's herbs in a week or so after adding in Artemesinin first.

Added HH2 Today

Well, I am on Day 5 since adding in all my herbs and I have now added in HH2 which is an herb from Dr. Zhang's Protocol that my LLND has me on.  I have had a pretty strong headache today - not sure if is it from the chocolate I have been eating, the initial Lyme herbs or the HH2 but my guess is it is the HH2.  So I will take the HH2 for 3 more days and then add in Artemesinin.  That is the last herb my LLND has me on.  I have ordered and will be taken Stephan Buhner's herbs Andrographis, Japanese Knotweed and Cat's Claw as they will be arrive to my home here in Australia shortly.  Just a little update is all (helps me to keep tract of progress and reactions that I am having so I can go back and look at what I wrote and then tell my doctor).

And so it begins....again

So I just started my LLND's herbs yesterday so I am on day two. Feel nothing.  Other than cognitively I find myself not able to form sentences as well today.  Like when I am talking to my husband and find myself stuttering.  So that may be an effect because I can't remember how long it has been since I have had trouble getting my words out.  Don't get me wrong...I am still talking...alot.  Just find myself stuttering here and there.  So right now I am taking the Smilax, Teasel and Lyme Support Formula.  I am waiting 72 hours to see if I get sick, and if I am okay, I will add in the HH2 and then a few days later the artemesinin.  I ordered and am waiting for Buhner's herbs in the mail.  I ordered a combo formula of Adrographis, Japanese Knotweed, Cat's Claw with Smilax and Dandelion.  Buhner says if there is any herb that he would advise patients who are taking antibiotics it would be Japanese Knotweed so I am going to give it a go as they say here in Australia.

Organic Acid Test: Insignt into Bartonella Infection?

Okay. Well, I was having a nice relaxing bath, praying and thinking and I just began thinking about the Organic Acid Testing I had done a couple of years ago. I am getting set to have it done here again as part of the Metametrix ION test I am having done which includes it.

What we know about Lyme is that inhibits the pathway in which the body metabolizes tryptophan from food. It takes what would naturally turn into tryptophan and turns it into a neurotoxin. Tryptophan gives us calm, upbeat, happy feelings and makes the neurotransmitter Serotonin.

Okay. So I tested positive for Lyme. But not Bartonella. However, when I began treating the Bartonella with Rifampin, two "cat scratch" like marks with non-blanching centers appeared on my forearm on the exact opposite side of my forearm than the bulls-eye lyme rash that appeared 1 days into taking Doxycycline. My LLND suspected I had Bartonella, even though I didn't blood test positive for it, because of my severe anxiety issues that is usually a clue that you have Bartonella.

But what causes the anxiety? Here is my thought. Lyme causes you to be depressed feeling via the change in the Tryptophan/Serotonin pathway. Does Bartonella cause anxiety/panic via the Phenylalinine (Tyrosine)/Norephinephrine pathway? Phenylalanine and Tyrosine are involved in Neurotransmitters as well producing alert, calm feelings.

On my Organic Acid Test, it indiciates very, very high levels of the p-Hydroxyphelacetate which is not considered "normal". I found some information on this organic acid on a website that explains the organic acid test. This is what it says:

For individuals with normal, healthy intestinal function, these compounds (p-Hydroxybenzoate, p-Hydroxypheylacetate, Tricarballylate) should not appear at more than background concentrations in urine due to the efficient metabolic conservation or recycling of phenyl group compounds of which they are composed. They are produced by microbial action on tyrosine and phenylalanine and are markers of backterial growth in the gut.

So there is a bacteria in my gut that is preying on my phenylalanine and tyrosine. Could it be Bartonella? Has anybody else with Bartonella had an Organic Acid Test and had similar results? If they have, and they have high levels of this particular organic acid could it be an indirect way to test for the Bartonella organism that often evades basic blood testing. I am just curious. Kind of like how CD-57 is an indirect way to test for the presence of Chronic Lyme, could OAT (Organic Acid Testing) be an indirect way to test for the presence of Bartonella? Maybe. Just a thought.

By the way, Phenylacetate was very high as well, as high as p-Hydroxyphenylacetate. Just a FYI.

Bleeding

So I had vaginal bleeding two days ago. I thought my period had started. But the next day it was all gone and the next. I have a period app called period tracker where I have kept track of all my periods start and end dates in the past but because I switched phones, and haven't completed updating all the information, I haven't been keeping track since my move here. Anyways, it is scary thinking about what it might be. I know alot of women without Lyme Disease may randomly bleed here and there but I never have so it freaks me out. Anyways, because this blog is a bit of a journal/blog I am writing it here if I ever need to reference back to it.

And by the way, I took 2 fluconozole tablets last week because I was getting a pretty bad yeast infection. I think it was from all the stress I was going through. So not sure if that has anything to do with it although I have taken fluconozole before and never had bleeding so it doesn't seem to have anything to do with it.

Was it Erlichia? Update

So on my last post, I was wondering if I had Erlichia because of those ice-pick like headaches. Well, you know what I just read from Dr. Singleton's book The Lyme Disease Solution? I read that Bartonella gives ice-pick like headaches as well. But the thing about Bartonella is that it creates heel pain and I still have major heel pain so it wouldn't make sense that Bartonella has been eradicated because I still have some major Bartonella symptoms and in fact, I have developed "cat scratches" on the direct opposite side of my bullseye lyme rash that appeared 10 days into taking Doxycycline. Which has me thinking, was it Bartonella causing those ice-pick headaches after all even though it isn't gone...or was it Erlichia? Don't know!

Thinking About Co-Infections: Erlichia

Sooo...I have just been thinking and noticing I haven't had any ice pick like feelings in my head that I normally get when I feel exhausted and tired. They are jabs throughout my brain and even when I got sick this past week I didn't get them. I am going to be getting some blood drawn this next week and usually after a blood draw I feel them. Which makes me wonder - did I have another co-infection that I didn't test positive for on the tests and we didn't know I had? Doxycycline, I believe treats erlichia and erlichia causes knife like headaches. Erlichia typically is eradicated quite quickly through taking Doxycycline. Bartonella suppresses immune function so did I not even test positive to Erlichia even though I was. These are the symptoms of Erlichia per Dr. Burrascano's 2008 Lyme Disease Guidelines:

EHRLICHIA/ANAPLASMA-

• · Rapid onset of initial illness with fever, headache, prostration.

• · Headaches are sharp, knife-like, and often behind the eyes.

• · Muscle pain, not joint pain, and can be mild or severe.

• · Low WBC count, elevated liver enzymes, and (rarely) inclusions seen in the WBCs.

• · Rarely see diffuse vasculitic rash, including palms and soles (less than 10%).

• · Rapid response to treatment.

  
  

  I don't have any of the other symptoms but the knife like headaches and a rapid response to treatment. Hmmmm....will have to read more on this. If I did indeed have it, good thing I took Doxy as it is a first line treatment. Maybe I have whacked off one co-infection already. Now if in the future, I get those headaches again...well, then I'll know I most likely never had it. Interesting stuff!!!!!

  
  

  I'm adding to this post because I just realized that I may have had the first symptom which is rapid onset with fever and prostration. In May of 2007 I became really sick. We were getting ready for a cross country trip where we would move from New York State to California. My mother in law flew out to help us move but because I had been so sick I hadn't gotten a thing packed. A ton of people from our church helped us pack up all our stuff. I was bone tired. Prostrate. I felt hit by a Mac truck and I couldn't lift a finger. Mi had never, ever felt that way with another sickness. Just the intense total weakness to not lift a finger. I am thinking...that may have been Erlichia. Maybe not but thinking it through it is a possibility.

Feeling Better but Grouchy Today

Happy Easter! Well, yesterday I didn't take any 5htp at all and just took the 6 sprays of tyrosine sublingually. Today is a much better day. It seems odd but the 5htp seemed to be causing the anxiety. I am not sure. I will have to get tested but last night I didn't take any melatonin either which is part of the 5htp-serotonin pathway. I haven't yet taken any of my sprays today either. Am going to add in the 5htp (2 sprays 2x day) and melatonin and see if I have morning anxiety tomorrow. If so. It will be pretty convinced that it is the 5htp causing the anxiety because I took too much of it a few weeks ago. The waves of panic going through my body, very well could have been too high 5htp and too low tyrosine creating a serotonin syndrome type reaction. Can't wait until my Neuroscience kits arrive in the mail so I can test. Ugh. I wish I could have tested at the height of my panic and fear to know what exactly was going on in the neurotransmitter department. Oh well. Yes, I am grouchy though. Not sure what to attribute that too but I definitely sense an increase in irritability.

God in the Midst

So as I write this on Good Friday morning, and my kids are on their first day of their Term 1 school break (yay), I am having anxiety arise and then go down in my stomach. My neurotransmitters are off. I hate having this anxiety because my house is a mess and I have a hard time reigning myself into the day to day duties until I feel settled. So when I feel like this, I don't do much or I sit and read (if I can) about how to get better or think through what might be going on to cause this.

However, I felt like God gave me a gift, a sign from Him yesterday. Maybe He knew I needed it because this is the first time in about 3 years that I have felt this level of panic, fear and anxiety and it truly terrifies me. So let me share the story of yesterday.

About 3 months ago, I was searching for a doctor here in Australia who knew how to treat Lyme who could work hand in hand with my LLND in the states. I found Dr. Mayne of Laurieton Medical but he is on the East Coast of Australia and I am all the way on the West Coast. His was the only name in all of Australia to come up after extensive google searching of doctors who treated Lyme in Australia. So I e-mailed and asked about becoming a patient. They said, I very well could but that Dr. Mayne suggested I see another doctor here in Perth and gave me her name. Earlier this week I made an appointment for Wednesday with her at noon but got stuck in traffic (40 minutes of it) and the appointment came and went and I had to call in and tell them I couldn't make it due to traffic on Highway 2 North. This is the first time I had ever left at 11:30am and been stuck in 40 minutes of traffic trying to get somewhere. They rescheduled me for Thursday, same time. Two of my kids were home from school that day, one is in 3-day Kindy and the others tummy was not so well so I took them with me. When I got to the doctors office (which was right by the gorgeous Indian Ocean!!!) and sat down to fill out the paperwork, anxiety filled my stomach. Anxiety is coming quite easily these days. I was nervous to meet this doctor. What would she think? Did she actually even treat Lyme or was it a doctor that Dr. Mayne had just suggested because it was his only contact over here. I had no idea. I was going to try and test the waters and see if she would be open to re-writing my LLND's prescriptions for my Lyme medications but as doctors are as diverse as their patients, and often not open to anything outside what they already know, I assumed there would be a fat chance of that actually happening. Only in my dreams.

Interestingly enough, after showering that morning, I took a moment to pray to God about the appointment as it takes emotional strength to go in and face a new doctor and tell them the story - or what parts of the story they want to know - and wait for their reaction. No part of me really anticipates this with too much hope as I have been hopeful in the past and disappointed. While I was praying, I felt like God say to me, "She is going to support you" and I just ignored it thinking it was my own wishful thinking - making my hopes be what God is saying to me rather than it being actual reality.

So, my name was called and in I went toting my 10 year old and 5 year old children. I showed her the brown spots on my lips that worry me and told her that I looked it up and it listed a few causes of what they could be - cancer (scariest of all), uv sun damage (Australia has highest rate of skin cancer in the world but I have only been here 3 months - gheesh!!) or b-vitamin deficiencies. I figured the last was most likely of all because I had noticed a couple of weeks ago that I haven't been taking my b-vitamins for perhaps months (!!!) because I hadn't replaced a bottle that had gone empty. Anyways, I have yet to know what is actually going on and she has ordered a few vitamin b tests as well as other things before proceeding with a small biopsy. I don't think either of us think it is anything serious but with Lyme you just don't know and need to be safe.

Then I told her I have Lyme disease and that I am being treated by Dr. N, who is a naturopathic doctor from the United States. I also let her know that in the United States, Naturopathic Doctors are licensed to prescribe medication which is different than in Australia where they are not licensed to do so. No US doctor is licensed to prescribe medication in Australia - even MD's - as only Australian MD's are licensed to do so, so I needed someone to rewrite my prescriptions from Dr. N in Australia because they were not valid coming from a US doctor at an Australian chemist (pharmacy). Annnywaays, when she heard Dr. N's name, she just immediately went to her computer and looked up an e-mail she had just recieved from patient that morning who had Lyme Disease and wanted her to know about Dr. N. I told her that I needed someone as a liason so re-write my prescriptions and she said sure, and sat back and told me she had chills going through her body in reference to my coming in, a patient of Dr. N's all the way from the United States to her office the very day that she had been made aware of Dr. N from another patient of hers via e-mail. We talked through my treatment, my lyme test results. She asked what were my most immediate needs and I told her that would be to bring my stress level down before starting any Lyme treatment as it can knock my rear and give me more stress. She ordered some labs and I am to go in and review them with her next week. She will do the monthly liver, kidney function tests just to make sure the medications aren't hurting my body. My anxiety dissipated and calm and gratitude filled my soul. I told her I believed she was an answer to prayer. I had brought a copy of Dr. N's book with me and showed it to her and she said that she would love to speak with Dr. N. She said that many people are coming and wanting to be tested for Lyme now but the tests are so expensive and turn around time is long because they need to be sent to the US ( I know extensive co-infection testing is expensive but the initial lyme work up is only about $100-$200 US dollars plus overnight shipping which would be about $100 more) and also that not much is known on Lyme in Australia.

As I left this appointment, as I was in awe at the hand of God in my life. It could be chalked up to coincidence but it is mighty rare as the doctor I met with had never heard of Dr. N before and the day I walked through her door she had just eceived an e-mail regarding Dr. N was the very day I walked through her door, fresh from the USA, saying Dr. N is my doctor. Dr. N travels to Australia, 3 times a year (I think) to do clinics for patients here. Wouldn't it be fantastic if she did them in Western Australia as well as helped educate doctors over here so that the patients suffering from borrelia (Lyme) related illness could have justice, hope, peace and wellness that they haven't had before? I left feeling like God cares about me and God cares about people and even though I am going through a hard time right now, and am suffering, He is here in the midst and he gave me a sign of confirmation that I am on the right path as well as a sign to the doctor I met with as well. I am so, so blessed my this. I am grateful for His encouraging me on this journey and am hopeful for a good outcome, however long it may take me to get there.

After returning home I took a look at Dr. N's website and her information on Lyme and read this from one of her blog posts:

For me, my motivation in working with Lyme disease is to be able to provide something that patients often don’t find anywhere else – someone who listens and who cares. And of course, being that I grew up in Sydney, Australia is very close to my heart – it’s a real honor (pardon me, I mean honour) for me to go there and see Lyme patients and try to share the knowledge that I have accumulated through my studies and work in the United States over the past few years. If I can play a role in bridging those two worlds then I will feel fulfilled and know that I am living in the true calling that God has on my life.

I am so grateful for doctors who have the courage to stand up for the weak and those who can't stand up for themselves. I am so grateful for those who are open to being God's hand's in bringing justice to the afflicted in the world. I am grateful for organizations and people who are putting finances into late stage Lyme Disease research so that in the future young doctors who go to medical school will have the research and facts they crave so that they can treat chronic Lyme Disease with confidence and have the scientific data behind their treatments to back them up. I am thankful that this is taking place today and soon will turn the tide in the favor of those suffering so much today and many not knowing what they are suffering from.

Psalm 72:12-14

People who are in need will cry out, and he will save them.

He will save those who are hurting.

They don't have anyone else who can help them.

He will take pity on those who are weak and in need.

He will save them from death.

He will save them from people who beat others down.

He will save them from people who do mean things to them.

Their lives are very special to Him.

Psalm 82:4

Stand up for those who are weak and those whose fathers have died.

See to it that those who are poor and those who are beaten down are treated fairly.

Save the weak and those who are in need.

Save them from the power of sinful people.

Amos 5:24

But let justice roll down like water, a righteousness like an ever-flowing stream.

Yes, and amen.

Every now and again, the hand of God appears and lets you know He is there, in the midst of the suffering, the pain and the anxiety and He wants to help and bring "justice to the afflicted among the people" and to you.

Hell Week Update

So, yesterday I threw up. Lots of yellow bile. The stomach bug is going through our house. Now I am wondering if all the crazy symptoms were by body fighting it off. The biggest feeling I felt were fear, anxiety and panic. Right now I feel a bit of fear.

Last night I had a fever. I haven't had a fever in as long as I can remember. It may not have been actually that high but it felt warm and it actually felt comforting. With Bartonella, you don't get fevers I read which makes sense because when I used to get sick (before Lyme Disease) I actually got fevers but ever since Lyme, my body temp has always been lower than normal and when I am sick my temp only goes up to 98.6.

Anyways, I had chills, body aches and anxiety in the evening last night. After taking the Ashwaganda and Passionflower to reduce cortisol levels at the beginning of the week, the anxiety was mostly in the morning. So yesterday I felt worried because it increased in the evening. Then I started throwing up. Then come my kids bedtime, I had chills, weakness and body aches. Then at 10pm when my husband got home from work it was a fever. With body aches.

Now, I am just weak. This morning my voice could only be a whisper. I am sitting on the couch and feel my bones aching.

I can't wait until I don't have Lyme anymore. Right now I feel afraid, afraid that since I kept my kids home from school (one of them was still not feeling well and I was feeling too weak to get all 3 of them ready and my husband left for work and told me to all stay home). Scared that I am going to get in trouble. But I think the fear is whatever is going on in my body and not really reality. I really have false emotions and false feelings that come from this disease.

My husband really wants me to start up with my Lyme treatment again. I do too. In fact I was planning on starting it all next week because my kids will be home from school for 2 and a half weeks and I thought it would be a good time to start. But now with how I am feeling I am not so sure :-(.

I called my doctor in Texas about overnighting me a NeuroScience neurotransmitter test because I am all out. It would be really good to know what my neurotransmitters are when I am feeling the fear and anxiety. He may be able to help me get them to a place where I don't feel it as much by balancing them out. I wish I had a kit here so I could have taken the test (just urine) and mailed it off but oh well. I called NeuroScience to see if they had a provider here in Western Australia but no one in Australia orders their tests! So I left a message on my doctors office phone last night saying I am really stressed (didn't want to go into detail) and want a test kit so I can figure out where my neurotransmitters are.

So that is the current scoop. I wish - I wish that I didn't feel these intense waves of fear and panic. They are SOOOO scary. I literally was thinking I was going to die because my blood pressure was going up. It is still a little high. I need to get a different blood pressure machine because the one I bought is too slow and too tight (ugh!). I broke blood under the skin on one arm because sometimes it messes up and goes too tight. Right now, I just want to go back to Texas. I do. This has been really, really stressful. Its not that I love Texas but I feel safe there - my kids liked school (although I didn't care for the Kindergarten there - too strict and not enough play) and I was close to my doctor. Close to help if I needed it. Here, no one knows about Lyme. I will be traveling up North to see a doctor tomorrow (If I am feeling okay) to tell here about Lyme as she was recommended to me by the one doctor in NSW that treats Lyme - He is over by Sydney I think so that wouldn't work. Anyways. God help me.

Brown Spots on Lips

One more thing, I have two brown spots on my lips, fairly large, but thankfully toward the inside of the lip. I am not sure where they came from but I noticed them for the first time about 3 weeks ago. These are a bit scary too. My husband wants me to go to the doctor to check them out. I have been such a ball of nerves I am not sure which doctor to go to. Oh, and one more note on my nerves, I was scared I was going to die this morning and last night because my blood pressure was so high. No fun feeling that way. No fun at all.

Hell

Felt like hell this week. Have had waves of panic and anxiety reverberating through my body. Just went to a naturopathic pharmacy and picked up some ashwaganda and passionflower as both are said to reduce cortisol levels. I think my cortisol has been through the roof. My blood pressure was up 30 points, I had waves of motion going through my body and intense feelings of fear when I would wake up. I hate this!!! I have to say that I am feeling much better now so I am able to write but I am still not completely out of it. I feel surges of adrenaline and fear under the surface. Not exactly the post I wanted to write but this will help me to remember. Oh, and I have had a really hard time concentrating - I am doing something and then forget what I am doing, what I need - just a real panic state.

What led up to this? Who knows exactly but I have a few clues.

1) I just realized I haven't been taking B-Vitamins for I don't know how long - maybe 3 months?? I must have ran out and never opened a new bottle to put with all my other vitamins I take at night.

2) Same thing for CoQ10 - I went off that a while ago too and didn't open another bottle.

3) I have been spotty on taking my vitamins and my neurosprays. I dosed a bunch of tyrosine for a while and then 5htp so I think I mixed everything up. My neurotransmitter came back and my serotonin was on the low side but not too low. Dopac was also low as well as 5HIAA which are usually much higher. Not sure what to contribute this too. These are the spilloever which would indicate not much is spilling over.

So I haven't had this panic state with waves going though my body for about 3 years so yes, this really, really stresses me out.

I am sure I have used up a lot more vitamins etc than normal with our move to Australia. I have been forced to be 100 times more social than I was in the States because I have to get out of my car to pick up my kindergartner and wait around at the school playground for 15 minutes more until my older kids come and meet us there. I meet about 5 new people a day and their kids and they tell me their names and I feel stressed trying to remember everyone. I really just want to be by myself when I feel like this but there is no where to hide!!!

Australians can be very direct and rude and this has also stressed me out. On top of that my neighbor was broken into the other week and had a face to face confrontation with the two burglers. Just the other night we had what looked like a baby snake in my kids bedroom so my husband got out a knife and cut it. Baby snakes are more venomous than regular snakes and baby snakes mean mommy snake and more babies so I was freaking out. He cut off the tail but it was still moving (Gross!!!) When it finally stopped wiggling we discovered it was a salamander that looked like a snake. Gave me a scare!

My son has had some kids who have been mean to him at school and felt he was being bullied so I had to go in and talk to his teacher. I don't want to go into all that but this really, really, really stressed me out.

On top of that, a few weekends before we tried to buy a sofa from someone off Gumtree which is like Craiglist in the States and after we got it home and my husband laid on it, he had a major allergic reaction so I made arrangements with the owners wife to return it and did so and after that got threats from the owner so we had to call the police, etc. etc. etc. Life has just been so stressful.

Oh, and every day, my sons kindy class has a lady that is constantly asking people to do stuff (social stuff) and I get so tired of it. I was asked to do fundraising and because I didn't know how to say no, said yes and then went back and said no.

I know, I know, this is all just a bunch of stuff but it all adds up and I think this is why I am feeling how I am. It all culminated with my son being bullied through. He is a gentle kid who doesn't lash out or is not verbally aggressive so a few kids take advantage of that. Why can't they just be nice and go to school to learn, not prey on other kids. Ugh!

Anwyays, so I am taking tons of CoQ10, B-Complex, Zinc, Ashwaganda, Passionflower and I am hoping this nightmare will be behind me.

Been a long time...

Well, it has been a LONG time.  A LONG time since I last took medication for Lyme.  Sad, I know.  But the move to Australia has really whooped me.  I didn't take vitamins for a few weeks and that has set me back and so now I am making sure all my levels are up before I start taking the medications.  Yesterday I got a yeast infection out of the blue so I took a fluconozole and today had mega-cramping but only for about 15 minutes.  Gotta love lyme and all its wonderful ways it manifests.  Signing off.  Will sign on when I actually start all the treatments!