Major Setback

[APbeliever]

I have hit a real bad spell these days. I have been on AP (Minocyline), LDN and supplements for sometime now and was doing ok on them. Recently due to cold, infections and fever I got a major RA flare which does not seem to go away at all. I was wondering if others had the same problems after infections and fever and what they did to overcome it. It seems this disease comes back with a vengeance specially after an infection, fever or cold.

[lynnie_sydney]

APb – sorry to hear you are having such a hard time. Are you still on mino? It’s just that your sig line says you took it until July 2010, so not clear whether you have stopped. If yes, then this would seem to be indicative. If no, then I’m wondering whether there might be an underlying chronic infection which may need to be addressed (strep, pneumonia etc) and one that might require an addition of another ab.

Incidentally, my AP/Lyme doc says that alot of mild flus are mutated version of swine flu and that this often changes the body’s response to abx. With a fever, your cold may have, in fact, been a flu. That certainly seemed to be the case for me. I had a couple of mild flus in quick succession in July/August and, within a month, started to get a return of some bad symptoms. A change of regime certainly seems to have worked for me.

If there appears to be no underlying infection, you may want to discuss with your doc a change of regime or perhaps an addition (zith?) until you are back on track. Hope you find some answers and feel better soon. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[APbeliever]

Thanks Lynnie for your response. Actually I started back on Minocycline in October after getting an infection. To clear the infection, doc gave me Mino only for 10 days 100X2 twice a day and I felt so much better with it. Finally after 10 days infection went away but RA reared its ugly head again. So I asked Rheumatologist to give me Mino again and I started using only 100 mgs MWF. Unfortunately, I started having fever, itchy throat again next month and Rheumy gave me 100X2 twice a day MWF. RA is hurting me bad all over. Rheumy has told me he needs to start me back on MTX again since nothing seems to be helping anymore. But I don’t wish to try it and want to continue to take it. Zith was not approved earlier due to liver pains(LFT tests are all normal) as Zith is specially hard on liver. Flagyl did not help me at all.

[Maz]

@APbeliever wrote:

Actually I started back on Minocycline in October after getting an infection.

To clear the infection, doc gave me Mino only for 10 days 100X2 twice a day and I felt so much better with it. Finally after 10 days infection went away but RA reared its ugly head again.

So I asked Rheumatologist to give me Mino again and I started using only 100 mgs MWF.

Unfortunately, I started having fever, itchy throat again next month and Rheumy gave me 100X2 twice a day MWF.

RA is hurting me bad all over. Rheumy has told me he needs to start me back on MTX again since nothing seems to be helping anymore. But I don’t wish to try it and want to continue to take it. Zith was not approved earlier due to liver pains(LFT tests are all normal) as Zith is specially hard on liver. Flagyl did not help me at all.

Hi APB,

Any reason you stopped your mino in the summer?

I’ve separated out your comments above, because any one of these things could re-initiate herxing all over again. Will list possibilities that came to mind, below, for you:

1. Stopping AP after remission, prematurely.

2. Re-starting AP at high dose for actue infection.

3. Stopping AP after acute infection.

4. Re-starting AP on low dose (100mg MWF).

5. Increasing AP soon after to 100mg BID MWF

These dosage changes all in quick succession, in addition to any acute infection or other stressor on immune system, could re-trigger symptoms of RA herxing. In fact, any changes in protocol can do same, even decreasing/splitting the dose. See:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

“There are cases where simply changing a single 100 mg daily dose of minocycline to two 50 mg split doses has provoked a JH due to an absorption increase.”

Would suggest emailing Dr. S. and asking for his input on how to re-start therapy. It could take some patience to regain the lost ground.

All the best to you and sorry to hear you’re back to square one. 🙁

[APbeliever]

Hi Maz, glad to see you back in here. I stopped Minocin in July because I had a complete remission of all my symptoms. The relief went on for two months and I enjoyed a break off Antibiotics. My hair became luxurious again which had become brittle and thin due to Minocin. It wasn’t any herx but my immunity was busy fighting off the infection so it was not attacking my joints. As soon as the infection went away, RA started its ugly attacks. I tried a lower dose to see if it was the herx but it wasn’t. Now I am on 100mgsX2 of Minocin MWF. My hips, hands and feet and knees, shoulders are all hurting. LIke you I also believe the trigger for RA to reappear was the infection. Now how we can we stop the infections or fever from blowing our way? 😥 I was so happy to get rid of both RA and Minocin

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