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