can old fashioned tetracycline help??

[lorena9]

Hi all wonderful people on this forum! i wonder if anyone has experience taking just plain tetracycline for RA? I was on mino first when diagnosed with palindromic rheumatoid (for only 2 months), as I went on doxy when diagnosed with chronic lyme which I took for 4 months along with TInadazole. Stopped everything, in May and had a great summer. I felt very little body aches for a bit, and my mood was better and other neuro symptoms disappeared. Now I feel as if my Palindromic RA is now full blown RA. For the last 4 months there hasn’t been a day without pain and swelling, wrists, knees, shoulders, ankles ( asymmetrical) and general body aches. I am wondering: well did i “cure” the Lyme but is the RA back full force?? I do not want to go to a rheumy and would like to take Abx again so I contacted the LLMD I had been in touch with a while back who wants to start me on tetracycline (500) 2x a day for the lyme. What i am wondering is if my symptoms feel more RA than lyme, am I going on the wrong path with the tetra? I have a high ANA, and positive RF and CCP.. Also positive on the Western Blot IgM and neg. on the IgG. very high C4. Will the tetra address the RA as well as the lyme as I understand from this site that doxy and mino are what helps with the RA.
Any feedback would be appreciated!!! Many thanks.

[PhilC]

Hi Lorena,

Tetracycline is fine — see: Tetracycline Therapy.

I’m surprised that your LLMD thought you were cured after only four months of treatment. A person can be free of overt symptoms and still be infected. Also, tetracycline alone won’t cure you of Lyme Disease, so I hope your LLMD is planning to add additional antibiotics to your treatment at the appropriate time.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Lynne G.SD]

Hi Lorena;
Did you see the article that Maz posted a couple weeks ago.We may never ever get rid of Lyme.This really upset me as it seems to come back and bite me every few months so this makes sense

http://newyork.cbslocal.com/2014/03/27/study-antibiotics-dont-kill-lyme-disease-bacteria/

[Maz]

Hi Lorena,

Yes, I used tetracycline in combo with biaxin and plaquenil in my first year of treatment. I was put on 750mg tetracycline, 500mg biaxin and plaquenil twice daily for all. Tetracycline is a first generation tetra and higher dosing is needed in terms of equivalency to mino or doxy (i.e. 250mg tetra = 100mg mino/doxy). LLMDs, on the whole, prefer tetracycline or doxycycline, because higher dosing is needed to hit the Lyme bug (unlike mycoplasma, which is slow-growing/replicating) and minocycline is harder to tolerate in equivalent higher doses (more side-effects). It can be hard to tolerate these higher doses for Lyme, especially for the rheumatic who has a lot of inflammation and doing things to support the body get rid of circulating endotoxin released by dying bugs are pretty much essential during this time.

Totally on board with what both Lynne and Phil say above – “cure” is not a word that many chronic Lymies like to throw around, because even when remission is attained, relapses are the norm. Most prefer to remain on a low maintenance dose for life, once remission is achieved, just to help prevent relapse, though some braver types might feel they’re in good enough shape to trial going off the treatment and sometimes getting a CD57 test run can help with that decision.

Btw, aside from herxing, I tolerated high dose tetra pretty well without any side-effects. Higher dosing can cause sun-sensitivity, however, so if you live anywhere hot and sunny, one needs to take extra care of the skin as with any tetra not to get burned.

The following study may interest you, Lorena. Seems RA and chronic Lymies may share a common enzyme deficiency, called GusB, a type of lisosomal storage disease that causes a build-up of GAGs in the body. This research may wind up being a critical key as to why those of us with autoimmune responses to the Lyme bug can’t get well as fast as others who seem to be able to take a few weeks of doxy and are set to go. The bottom line, as Lynne says above, we never really get rid of any bug in the body and the immune system normally keeps things in check. However, there are a proportion of us who do wind up getting autoimmune manifestations of Lyme and this enzyme deficiency may prove to provide both a hopeful treatment and answers as to why. Hopefully, this research won’t be ignored or thrown off into the fringe due to lack of funding, though there was a good response from the field of rheumatology.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3871255/

[lorena9]

Hi – Thanks for your reply… Phil, I believe he is planning on changing that antibiotic comes summer. Actually, I am the one who chose to stop the doxy etc.( although with the blessing from my LLMD at the time not same as the tetra LLMD ). My LLMD is in the U.S and i am in London. I felt better ( remission) and erroneously thought this was it!!! Why add more “drugs ” to my body.? So I chose to phase out the antibiotics and tried the Bruhner protocal, Cats Claw and Japanese Knotweed for a short time too as I believe i started too quickly and was most likely having a bit of herxing, blurry eyes and uneven gait, dizziness, etc…. so then I stopped the herbs too.
As Lynne and Maz reminded me, we never quite rid of Lyme and I think I need to come to grasp with this reality. Perhaps I will still add the herbal protocol to the abx. I am so confused as to what i am treating now, the lyme or the RA or both?? (Or maybe it doesn’t even matter /Whatever makes me feel better)?
I guess what you mention Maz about the build up of GAG may have something to do with this confusion. It is quite interesting and thanks for the link. I will go on the tetra ( 500 3 x a day) and will keep you posted. Thanks again . One of the things among countless others that I have learnt from this wonderful forum is that one needs to be patient with the different protacols.. I will never know what works if i am jumping from one to the other, which feels as if this is what I have been doing !! Wish me luck!!! Lorena

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