posted
It has been a long time since I've loaded up Lymenet. I thought I would relate my experiences over the last 8 months.
For the last 3+ years I had symptoms which started with palpitations and evolved into monthly episodes of fatigue, brain fog, etc. 2 years ago we recognized it as something infectious, and ruled out everything that my regular physician could test for. We then considered Lyme and called in a LLMD who gave me a positive clinical diagnosis for Lyme. Igenex tests, however, were borderline, but that didn't prevent treatment. In 2008 I was treated with increasingly strong doses of antibiotics along with a whole retinue of other herbs and compounds to no avail. Also, no response such as Herxing. The fatigue episodes contunued on their weird schedule, unabated.
I was also tested for co-infections. The only positive was this thing people have been discussing as "Hemobartonella or Mycoplasma spp." (Fry Labs). After Fry announced to the world in March the identification of this as some Apicomplexan protozoan related to Malaria, Theilaria and Babesia, my LLMD prescribed Artemisinin, along with Turmeric that would supposedly boost the Artemisinin along with a whole host of other compounds as before.
Within 2 days I had a flareup of symptoms (Herx) indicating we were on the correct path finally - treating the correctly diagnosed bug with the appropriate medicine.
Unfortunately my LLMD was not monitoring my liver. This doctor's knowledge of Artemisinin and its dosage, etc. was apparently limited. Had this LLMD read the MSDS for the Artemisinin brand she prescribed, she would have informed me to dose myself with this for less than 2 weeks, and ordered liver tests.
Instead, I continued taking it as directed. I noticed within a week that my pee was turning bright yellow and left a stain. I wrongly assumed this was the turmeric. My monthly fatigue episode went missing so I thought continuing on my regimen was a good thing. However, I was feeling increasingly toxic.
Finally in mid May, all hell broke loose. I awoke one night with itching all over. I suspected an allergic reaction and discontinued everything. No change to the itching. I dosed myself with an antihistamine. Still no change to the itching. My pee stayed bright yellow and my stools became clay colored.
I went in to my regular physician (not the LLMD) and she immediately recognized jaundice and ordered untrasound, as well as blood tests. Two days later we went over the results: fatty liver, and enzymes way off the charts. She almost called 911 then as she didn't know what to do with me - she had never seen it this bad before. A quick consult with a liver specialist over the phone calmed things a bit but an appointment was made a few days later - and directions to head to the hospital immediately should severe pain occur, etc. that would signal liver failure.
The liver specialist ordered all sorts of liver related tests (Hep, etc) including a cat scan of my torso to look for cancers etc. All came up negative thankfully. Meanwhile, my liver numbers continued to surging and by mid June my Bilirubin reached 42.5 (normal is 1.1 or less). My MELD scores were high enough that I was eligible for a transplant in some states. I have seen liver disease close up with a relative who eventually got a transplant within hours of dying. I felt like my end was nearing.
This period was awful and lasted until July. The itching was profound and felt like I had been rolled in nettles on top of a bad sunburn on top of chicken pox I couldn't sleep. There was no way to get relief from it including sleeping pills, warm baths, lotions, etc. I dropped weight rapidly and looked like I was 30 years older suddenly. My friends were horrified. My skin was the color of an orange.
My regular physician apparently called my LLMD and read her the riot act as far as liver monitoring was concerned. That was satisfying.
The liver specialist ordered staying away from all supplements and pills etc., eating a very digestible diet, and bearing with it. She was superb and supportive. Eventually my numbers declined and by the beginning of July I began to sleep again, itch less. By late July I was more or less fully functional. My liver doc gave me permission to go off to an annual music camp in the Redwoods and I went there and had more energy than I've had all year. I also didn't catch the flu my daughter caught (probably H1N1 - and she isn't catching that now!).
August and since have been great. The good news is that my liver numbers returned to normal, with the Bilirubin at .9 in late August. I still haven't started any supplements etc. The best news is that whatever we were calling Lyme has disappeared, or been severely attenuated. I am noticing some symptoms like going through a sweaty period, and other minor symptoms, but nothing like before. These may have other causes, such as too much salt in my diet, dark chocolate, etc. and now I am trying to travel a middle road. Its good to establish a baseline unperturbed by pills - and see how well or sick I am really.
I am curious if this infection detected by the blood smear is still present. Yesterday a friend of mine and I went into the lab together. He is a phlebotomist and so we made our own blood smears, stained them with Giemsa, and examined them at 1000X. We weren't following the protocol exactly (the stain was too thick - needs to be diluted 20X with methanol and we didn't have any). Unstained my blood cells looked fine - nothing adhering to them. We examined these under several intensities of light and polarization. The stained slides had lots of particulate from the Giemsa being too thick. But in the best areas of these slides I could see no infection. We'll repeat the test if and when I have symptoms.
The conclusion of the liver specialist was that my liver trauma was the direct result of a drug overdose from the Artemisinin itself and no other medical cause. Ironically, the MSDS that my LLMD failed to notice states that use of their Artemisinin product beyond 2 weeks can result in severe liver trauma.
In all fairness my LLMD finally got it right we think as far as the malaria-like bug, after more or less flying blind.
But this whole experience has soured me as far as LLMD doctors are concerned, or at least this one who I worked with. The flying blind part seems chronic and rampant. I am never going back to her. She is operating on belief systems including that of her own infallibility (Prima Donna Complex), and looking at the world through (pardon the pun) Lyme colored glasses. Everything that ails one seems due to Lyme in her eyes. I wonder how many other LLMDs operate similarly, in almost a cult like fashion. This is bad science.
Things such as borderline Igenex results should be taken more seriously as borderline, not as proof of a clinical diagnosis of Lyme. It may be that the CDC is correct in their criteria, ironically!
I am horrified by the combinations of herbs, tinctures and drugs that this doctor prescribed me and likely prescribes to others. At one point, I was taking something like 20 different compounds twice daily, including Cipro, Tindamax and Ceftin simultaneously. I had some strange side effects from these that I reported to my LLMD and that alone should have immediately been a red flag to her that my liver may have been challenged. But no liver tests were ever ordered by her. Instead, she told me that none of her "thousands of patients" had ever had such side effects.
I considered a malpractice suit but decided not to pursue this - since that type of thing becomes an abhorrent lifestyle involving lawyers and can be personally intrusive and destructive. My regular doctor reading her the riot act and her now testing her patients' livers monthly is satisfaction enough. I will be reporting all of this to the appropriate state agency however.
I strongly urge everyone on this list to request a regular liver testing regimen, specially if you are on these exotic cocktails of antibiotics, herbs, tinctures, etc.! The tests are standard and not that expensive. Mine were covered by insurance (unlike the Igenex and Fry tests of course - partly why I am doing my own blood smears!). This is extremely important. Your life may depend upon it.
Casey Burns
Posts: 34 | From Kingston WA | Registered: Feb 2008
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massman
Unregistered
posted
Some excellent points ! Your liver by far is your most important organ.
I get very concerned with the high amounts of drugs and supplements that many on this site take.
Liver enzyme tests DO NOT show stress until the liver is really malfunctioning. Your numbers were out past Neptune somewhere.
Good that your GP was aware enough to find what was going on !
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thank you for posting your experience. Sorry you had such a bad one. Glad to hear the doctor adjusted her practice to take it into account.
Artemisinin raised my liver enzymes quite a lot.
Not to minimize your suffering or the potential damage you could have suffered but from my perspective, you are lucky that someone actually figured out what the problem was and you were treated and are now better.
Many of us have suffered for decades and no one has even taken an interest in trying to figure it out. Instead we are labled with CFS, Fibro, MS etc. and left to languish in our misery.
I never thought I would even consider the treatments that have brought me to a better place let alone be able to tolerate them but I'd rather have multi-drug treatment and drug probes to figure out what works if the alternative is spending decades suffering horribly.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you for sharing with us Casey. What a scary, terrible situation you had to endure.
Your experience is a good reminder to all of us to be careful and aware. Everything that we put in our mouths, even stuff that goes on the skin is absorbed and processed by the body.
Supplements, herbs, vitamins, and drugs all have side effects. Not everything is a herx. We need to be careful with these treatment combinations. Know our bodies. Know what we are taking and what is to be expected. F/u regularly with our doctors.
We need to be our own advocates.
Thanks again Casey.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Sorry for what happened to you Casey. Glad you are doing better. Please keep a close eye on your health as very few people actually get rid of Babesia with art. It could easily still be hiding out in your body.
Curious as to what your GGT shows now. Many docs do not include that test in a standard liver panel. It is usually elevated with a fatty liver. And phosphatidylcholine or lecithin can lower that number.
Lyme and also babesia both rob the body of choline which causes many Lymies to develop a fatty liver. Plus the standard American diet which says to avoid eggs -- egg yolks are one of the best sources of choline in the diet.
I agree that the doc was irresponsible to not order liver panels for her patients. But if you really did have Lyme and babesia or something similar then the infections most likely played a major part in your symptoms also.
It might be helpful to others if you could tell us the brand of artemesia or artemesinin that you took.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
The Artemisinin was made by the Allergy Research Group.
I am about to get another blood monitoring test done to see where things stand. The liver doctor said that it can sometimes take several months for things to settle down, but not worry about it at this point. Here were the liver numbers from my last test:
Bilirubin .9 (normal is .1 to 1.2) Alk Phos 162 (normal is 25 to 150). Note that this is down from a high of 355 in July AST (SGOT) 53 (normal 0 to 40) Down from a higher value of 73 in July ALT (SGPT) 55 (normal 0 to 55) Down from a higher value of 67 in July
Posts: 34 | From Kingston WA | Registered: Feb 2008
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