RA and Lyme Diagnosis interpretation

[Karel]

Hello Forum, an update on my progress and some questions.
I am now 4 months on AP 200 mg minocycline M/W/F. At the start of the AP therapy I abruptly stopped my methotrexate (MTX) 20 mg injected, to have a better picture of AP

[Lynne G.SD]

Holy Smokes,girl.You really have Lyme so don’t waste any more money on tests for now.I have it also(long standing Lyme) and don’t ever expect to get rid of it completely.That is the big problem of not getting it treated at the very beginning.We just get the run around from doctors that just don’t know anything about it.
I live in Canada so you will have to wait for someone who lives in a state near you to answer the question about finding a doctor.I truly think this disease is worse than our immune diseases,it seems to be everywhere.Even my sister who lives in the high arctic got it…via migrating birds.Looks like she is cured for over a year now.I am keeping my fingers crossed for her.

[Karel]

Lynne, Thanks, but I am trying to convince myself otherwise…. Not sure if I expressed myself clearly in my previous post, but my clinical symptoms currently and past have not been typical Lyme if it is possible to say something like that at all. For example no neurological system issues normally associated with Lyme, but I do have the (light) fatigue (although getting better) and arthritis (but RA) which could be associated with both RA and Lyme. So the bite spot EM, if my memory is correct (but could also have been Southern Tick Associated Rash Illness), some non-specific clinical lyme symptoms and now positive blood.
Is it possible to have chronic lyme for 8 years and still function pretty alright (I have not taken days of from work)? I really think that the blood is false positive. Wish I could find a list of symptoms typical for chronic lyme. Most of the lists I have seen don’t distinguish between recent lyme and chronic.

Anyway, thanks for your reply. Unfortunately your experience does count!
Thanks a lot!
Karel

[Lynne G.SD]

Hi Karel;
There is no such thing as “typical” when it comes to Lyme.Looking back I suspect I got it 20 years ago.If you have a really good immune system,which Ihad,it can take many years before it breaks it down to the point one gets some other disease.Have you read the Canlyme site by any chance?Lots of very good info there.

[Karel]

Forum, I have found and visited a LLMD (I consider myself lucky living in a city with all kind of specialist around me), who recognizes the previous labwork done by Igenex, but has started with doing new Labcorp bloodwork (WB and EIA) and a virus panel to check if cross-reactivity could have influenced the Igenex test. For the bands tested by Labcorp (which follows CDC guidelines, is my understanding), they showed the same results as Igenex’s results for all but band 39, which was negative with Labcorp and positive(IGG) /neutral (IGM) with Igenex. I am trying to find an explanation for the difference, besides the possibility that within one month my immune response could have changed and that the labs have different cut-offs and ways of working. I have introduced Methotrexate back into my regime after the Igenex test 6 weeks ago (which I understand now is in general contraindicated with Lyme). Could the Methotrexate have surpressed my immune system within 6 weeks to a point where Band 39 IGM/IGG don’t show up anymore? And if so, why do bands 41 and 58 still show up with the Labcorps bloodwork. Thanks for your experience and ideas!! Regards, Karel

[mary77]

Karel,
I have been dealing with Lyme/RA for 30+ years…the first 10 yrs with no correct diagnosis or treatment. I managed to work during the first 15 years of illness as a professional ski patroller. I did have afternoon fevers, pain and developing RA symptoms during those years, but just kept on working. As symptoms worsened, I went from full-time to part-time to NO time. I never had typical neurological Lyme symptoms, other than fevers and rarely “brain fog”.

Years into this, I tried methotrexate with horrible results. Arthritis symptoms became intolerable on 1/3 the lowest dose they normally prescribe. Later, I tried Enbrel which caused a severe headache 24/7. I have never attempted any of the other arthritis medications.

The only treatment that consistently works for me is AP. I may never “cure” this but seem to be staying on top of it with antibiotics. Another factor for me is co-infections, of which I am very positive for Chlamydia pneumoniae and mycoplasma pn. I have also tested positive for EBV, CMV, HHV6 and babesia. From all I read, borrelia is very immune suppressing, so co-infections can fluorish. The antibiotics I am currently taking will work against most of them. There is a good website about the treatment for Cpn…http://www.cpnhelp.org/

I am taking doxy, biaxin and tinidazole…all pulsed. For me, patience and persistance is crucial. The only thing I know for sure from the past 30 years is that treating with antibiotics has not only saved my life but kept me alive much longer than I thought possible.

Your tests seem to indicate a Lyme infection…maybe someone else will chime in that is more familiar with the testing. Just know that Lyme disease is truly a multi-infection illness.

I wish you the best in finding the treatment that works for you. It is a journey…
Mary

[Karel]

Hi Marry, thanks for your lenghty, informative reply!
You bring up some interesting things, which make me think!
1) My experience with two DMARD’s (Methotrexate and Sulfasalazine) hasn’t been as bad as yours.Yes, I have seen an increase in tiredness and out-of-breathness but that could possibly be explained by my altered white/red and platelet count, not necessarily a flare in Lyme. For the rest, I don’t really feel worse on DMARD’s than without, but haven’t tried the Biologicals yet. Based on this, my thinking would be that, different from your case, I do not have Lyme….
2) You mentions co-infections. I have antibodies against each of the ones you mention, accept Babesia, but they all point out to past infections: basically IGG elevated, but no IGM. What tests were done with you to show co-infections (Antibodies, PCR?)and did the test show ongoing infections that you remember?
3) Did your RA, when it started, start with fingers and toes, symmetrically? I ask this, because I get the impression that some get diagnosed with RA while later it appears this to be Lyme arthritus (moving around, bigger joints and non-symetric)

For your information, I am currently preparing for more Igenex bloodwork, and am off the ABX for a period of 6 weeks.

Thanks for your thoughts!
All the best,
Karel

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