July 10, 2008 at 3:21 am #300626
Okay, here we go. I went to the doctor today and got my initial blood work:
M. Pneumonia AB IGM, EIA 384 less than 770 = negative
HLA-B 27 antigen not detected
SED rate 1
C-reactive protein <0.10
ANA CHOICE (TM) SCREEN positive
ANA pattern speckled
antinuclear antibodies 1: 160
rheumatoid factor 19
The numbers don't tell a terribly compelling story, and the doctor is not sure what is wrong. He says it is either RA, lupus, mixed connective tissue disease, or inflammatory arthritis. How is that for specific! 🙂 I have no stiffness, so he is questioning my prior RA diagnoses. I seem to be the closest match for lupus (at least I think so), but he says we have to wait and see.
He looked at my hand x-rays and said that what I had been told were erosions were actually calcium demineralizations from inflammation. While that is not great, it does provide some comfort.
I asked what he thought about antibiotics, and he said that the literature does not support such a theory. He said there was some efficacy with minocycline, but that such was largely due to minocycline's anti-inflammatory properties.
He said his greatest concern for me at this point was just getting me to feel better rather than preventing any erosions. He wanted me to start going off of my 10 mg of prednisone per day, and then we would supplement with other anti-inflammatories, and possibly plaq.
I?d like to get to the bottom of this and see someone who really knows their AP. I would appreciate any comments about any AP doctors you have seen. Please feel free to private message me.
Thanks for reading!
MarieJanuary 31, 2009 at 3:11 am #315245
I guess it's the season for IgeneX test results!
I just had tests for borrelia burgdorferi. I will only note the bands that came back positive or indeterminate:
Everything else was negative. I have a lot of Lymish symptoms, though.
MarieFebruary 24, 2009 at 4:22 am #315246
I had my 1st appt w/ a rheum/LLMD this week. I saw Dr. M in Rockville, Maryland.
Note: this post discusses Vit D. Please note that I am only repeating what the doctor said. Please feel free to do whatever you wish with this information. I know no more about D than what is posted here. People make different treatment choices re D. My rule of thumb is that if a person isn?t comfortable with a certain choice, it is not the right choice for them. I respect everyone?s Vit D treatment decisions. If you are seeking more info on the topic, the search feature on this board is a great place to start.
First off, he is brilliant. Like in another realm brilliant. He?s an MD but worked a lot as a scientist. He?s also ?into? a lot of stuff. Founded some biotech companies, invented a water faucet, among other things. Really fascinating (and nice) person. He tossed out so much medical info I wished I could have stayed all day.
He?s very on board w/ infectious roots to autoimmunity. He says last year he treated 9 RA patients w/ abx who?s RA ?melted away.? He says that the academics seem to like studying overactive T cells but that all that research isn?t worth all that much if the cause of the T cell activity is infection. He thinks we?re 1-2 years away from the infection/autoimmune connection entering the mainstream. (Wow!! Hope he?s right!)
He believed in holistic treatment, thinks complementary medicine should be more widely accepted, says that ot will take ?more than one thing? to get me well.
He also believes it?s important to heal the gut.
He usually prescribes something to open blood vessels to allow the abx to get where they need to go. He says there are several options here: baby aspirin, bolouke (enzymes) and benicar. He says benicar is also an anti-inflamm, which helps people feel better.
He?s not into the MP, though. He calls the MP a ?phenomenon.? He doesn?t like it that the MP site disallows dissent. He says that he?s done molecular modeling and that the conclusions that can be drawn from the method are very limited?and Marshall has drawn quite a sweeping conclusion. He is pro-D supplementation and wants his patients around 70-80. (He starts the supplementation slowly.) He says D prevents cancer, fends off the flu better than the vaccine and regulates the immune system. Regulates, he says, not suppresses. He says that dysregulated D metabolism, if it exists (he tests for it), usually improves once the patient is on abx. His explanation for the D dysregulation is that the patient is low on D in the first place?somehow the parathyroid figures in here, too. I really didn?t understand the ins and outs of that last point, but I?ll put it out there for those who are more scientifically minded.
He?s into detox and offers a milk thistle based liver support supplement. I had a heavy metals test done this fall, though, and I came back in the normal ranges. He?s not sure that I need to start a big detox program now (ie, sauna), but says I might need to later because we might be mobilizing undetected heavy metals. He doesn?t want to throw too many things at me at once w/ the result that we don?t know what?s working.
As to me, he says I?m from an endemic area (MN) and fit the profile of someone infected in the past who ?crashed? due to stressful life events.
He noted my indeterminate on me IGeneX band 31 and said it was significant b/c the only way you can get that, apart from infection, is from the vaccine, which is off the market. Since my test is not technically positive he says I won?t get ins coverage for IVs but that such doesn?t mean we shouldn?t treat w/ orals. (Query whether I?m sick enough for IVs, but what do I know! J)
On examination, he noticed that my shins were ?puffy.? He had to press through a layer of ?puffy? before feeling my tibia. (this despite my always[/i] having sed rates in the basement and a really low cardio CRP.) He also noticed my slightly blotchy skin (no other doc has) and said that means I?m hypercoagulating. I also get blue fingernails and toenails. He also noted dry skin, a lack of energy and cold intolerance and suspects I might be slightly hypothyroid. (It all sounds like a broken record, doesn?t it? J)
He?s running a bazillion more tests?more inflammatory markers, more coagulation markers, and more infection testing. Since I have so many lower body symptoms he wonders if bartonella might predominate.
He doesn?t like the term ?co-infection? because he says you can have just bart, or babs, etc. by themselves.
In the meantime, I?m supposed to start bolouke to get the blood flowing.April 5, 2009 at 11:17 pm #315247
I?ve been away for a while and feel like I have missed an awful lot. Last month I traveled to Maryland to see a rheum/LLMD. When I got home, I could barely use my hands for a couple weeks, and I needed help with the most simple tasks. It turned out that pulling my suitcase through the airport set off an inflammatory episode in my hands. Thankfully, doubling up on my anti-inflammatories calmed things down.
I got a bunch of tests results yesterday for Lyme, bartonella, babesia, inflammatory markers, coagulation markers, vitamin D, adrenals and thyroid. I don?t have the actual labs, my doc is out of town, so they are mailing them to me. At any rate? here they go?.
I?m looking hypothyroid. Reverse T3 is high. Rx armour thyroid.
Adrenals are normal (via saliva test). This test also showed gluten antibodies. I?m supposed to stay off gluten.
My CD57 was 140. This lead the dr away from thinking I have chronic lyme. He says given that I?ve been sick for 5 years, he?d expect that number to be a lot lower if I were sick with Lyme. (Or else I do and it?s not very active?) My progress thread has the results for my Igenex Lyme WB.
The vitamin D metabolism was also normal, inactive D was 26, active D was 29. That's pretty consistent for me, and I?ve had those tested three times now! He says the normal vitamin D metabolism also made him shy away from thinking lyme, as he thinks inverted vitamin D metabolism is more of a lyme creature.
The Fry smear for bartonella was equivocal-just one area of interest. The doctor is not willing to rule it out. Interestingly, though, the smear showed red blood cells sticking together.
Babesia: FISH (Igenex, using fluorescent and ultraviolet light to look at your blood) was negative, but that only tests for the babesia microti strain, not the babesia duncani/Wa-1 strain. Quest had my titer at 1:512, though, two times what constitutes a “positive” result from Quest. The doctor wonders if absence of microti in FISH means the Quest result is showing duncani. I will need to look at the labs to see what Quest was actually testing. (Dr. B says there might be as many as 24 strains of babesia! Duncani is supposed to be confined to the west coast. I?ve been to California twice and Arizona once, but that's it.)
As far as babesia symptoms go, I have nausea, heart palpitations, and, twice last July, I felt like I couldn't get enough air. It was weird. No sweats, fevers or coughs, though.
My coagulation markers are all normal, except both my S and C proteins were low normal. The doctor is wondering if, since both were low normal, the combined effect would be abnormal. I am wondering if my circulation problems come from my sticky red blood cells.
All of my inflammatory markers, including sed rate, cardio CRP and TGF-beta-1, are normal. Yet I am profoundly inflamed. He said babesia can cause arthritic symptoms without the normal inflammation markers. I thought that was interesting, and I haven't found anything on the Internet to support or contradict this proposition. Maybe someone else has some insight?
The doctor wants to retest babesia at Quest to make sure the high titer was not a fluke. Then he wants to start me on Zithromax and Mepron. He says if lyme is really there, Zithromax gives some coverage against it and that, if you want to treat Lyme, you first have to go after babesia.
He doesn't want to rule out Bartonella, though, and says that it might come out to play if we hit the babesia.
I'm not sure whether to be happy or sad with this news. I had been researching so much about borrelia, but now I have some more fact-finding to do about babesia. I think I just need some time to adjust to this new clinical picture. My biggest concern is whether babesia, like borrelia, can trigger autoimmune reactions. I do hope so – my ANA, RF and one of my Sjogren's antibodies are all positive. Somehow the idea of infection is easier on my psyche than the idea of autoimmunity.
Thanks for reading!
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