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.