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So I just had another appointment on monday (1/19/2015)
My last blood tests indicated I now have a low positive for drug-induced lupus(DILE), but without clinical symptoms. Dr. F. said he’s taking my dose down from 100 MG BID MWF to 100 MG BID Monday and Thursday only. If I continue to get worse, he wants to switch the antibiotic. On a better note. my anti-scleroderma 70 antibodies went down again(after going down,up,down,up). All other labs came back normal. And I am starting to get a significant increase of hair all over my body and in my beard, as well as on the actual site of morphea on my left fore arm.
He said from a clinical standpoint, DILE is really not anything I should be worried about; I had wondered if it could affect my heart, and he said no, only the sac around the heart. I asked him if other antibiotics could work just as well as the MINO, and he said yes, absolutely. He has more experience with treating SD with antibiotics than just about anyone, so I trust what he says is true as far as that goes.
He also signed off on my Igenex test, although he said because there are over 200 different species of spirochetes, that 9/10 patients come back with positive results.
He said he used to order Igenex testing all the time, but now he questions whether or not it is worth it.
Nevertheless, I still feel better having all my bases covered, and if a Lyme diagnoses could help me, then I will take that route in addition to keeping up with Dr. F.
That’s all I have to report for now.
Hi Chris,
Great update! Thanks for sharing your news with us.
@JustDiagnosedChris wrote:
My last blood tests indicated I now have a low positive for drug-induced lupus(DILE), but without clinical symptoms. Dr. F. said he’s taking my dose down from 100 MG BID MWF to 100 MG BID Monday and Thursday only. If I continue to get worse, he wants to switch the antibiotic. On a better note. my anti-scleroderma 70 antibodies went down again(after going down,up,down,up). All other labs came back normal. And I am starting to get a significant increase of hair all over my body and in my beard, as well as on the actual site of morphea on my left fore arm.
Well, the downside is the low positive DILE labs – the upside is that you’re not having any symptoms and, hopefully, the lower dose will ward it off. As he’s put you on such a low, pulsed dose now, did he say he might add a second abx now to fill the gap? Just wondering if any alternative game plan has been suggested at this point (i.e. rather than the wait-and-see approach). How great that all your other labs and symptoms are doing so well! This is totally awesome, Chris!
He said from a clinical standpoint, DILE is really not anything I should be worried about; I had wondered if it could affect my heart, and he said no, only the sac around the heart. I asked him if other antibiotics could work just as well as the MINO, and he said yes, absolutely. He has more experience with treating SD with antibiotics than just about anyone, so I trust what he says is true as far as that goes.
He’s right…if it is DILE, it goes away when the offending drug is stopped. It’s when it goes undiagnosed that problems can arise and these can be serious, if ignored, like the pericarditis he mentioned.
He also signed off on my Igenex test, although he said because there are over 200 different species of spirochetes, that 9/10 patients come back with positive results.
Did he really say, “species?” If so, he must have meant “strains.” There are actually over 300 strains of borreliosis, world-wide, and around 100 in the US.
He said he used to order Igenex testing all the time, but now he questions whether or not it is worth it.
Wonder what his rationale for that is? It’s the same as the standard test and just includes antibody bands that were removed when they were creating the LymeRix vaccine and never returned to the test! These are Bands 31 and 34 and they are so highly significant that they removed these bands as they didn’t want cross-reactivity with the vaccine….a vaccine that was withdrawn from the market as it was triggering autoimmunity in those genetically predisposed. In fact, Band 31, that looks for an antibody response to the borrelia protein, known as OSPA (outer surface protein A), has been correlated to causing RA and chronic Lyme arthritis in Lyme disease patients:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2168181/
The missing antibody bands are not just important, they are essential for a more comprehensive diagnosis.
Nevertheless, I still feel better having all my bases covered, and if a Lyme diagnoses could help me, then I will take that route in addition to keeping up with Dr. F.
Well, it was good of Dr. F. to sign off on the test, even if he’s not on board with the Lyme Literate world. 😉 You’re responding so well to treatment right now, it might be a moot point in the end, Chris. The results may have some bearing on your treatment direction, though, if you find some evidence for Lyme and you can no longer use minocycline. Of course, there’s always coinfections to consider, too. Didn’t he say you’d had some exposure to bartonella in his work-up?
@JustDiagnosedChris wrote:
It was either bartonella or toxiplasmosis or both.
Try to get hard copies of all your labs showing up positive for any infection, including your IGeneX labs, at your next visit, if you can, Chris. The total picture is quite important with this and should help enormously in making any treatment decisions.
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