New, please help re: Herx/side effects?

[magsmc]

I have atypical “RA” for the last 14 years, always seronegative.  Multiple joint involvement, some permanent damage in wrists and hands/feet.  I am 38 years old.  I was never tested for Lyme, sometimes wonder if it's the culprit.  Anyway, I started 100 mg. minocycline twice a day, 5 days ago, prescribed to me by the dermatologist.  Going to see new Rheumatologist tomorrow who is familiar with AP, supposedly.  Today I am so dizzy and nauseous I can hardly function, also diarrhea.  The question is, do I continue the mino. tonight or stop?  I have to care for kids, so can't continue in this state…is it o.k. to lower dosage or skip?  Any help is appreciated!

[Tiff]

Mag,

I have lots of experience with minocycline at various doses.  The typical dermatologist and even a lot of AP docs will prescribe mino at huge doses (200mg/day is huge).  I went along with that both for derm reasons and for RA and now I wish I had not.

If you have not used much antibiotics in the past, you would be well served to start much slower.  Please read The Road Back by Henry Scammel recommended by this site, and then you may want to do further research at the Marshall Protocol website to find out more about why you should even use ABx for treating these diseases.  You need to decide for yourself and have a lot more information to do that.  This is not a quick fix to RA.  I know just how you are feeling right now with the nausea and dizziness.  Believe me that can't go on!

You can drop down to 100mg/day or you could even take 100mg on MWF.  That would greatly help the nausea while you learn more about the theories behind its use.  Many people have great success with treating their RA at those doses so it would not hurt you to do that, and then discuss this more with your rheumatologist later. 

[magsmc]

Thanks so much for your reply.  I have read the book you recommend (a while back, will probably re-read it now), as well as researched the AP over the years.  Actually mentioned it to my dr. 10 years ago, was told it was not effective treatment, then he brought it up to me last visit!  Shows how paradigms shift.  Anyway, I do know it's not a quick fix., I have tried many options over the years, none successful for me.  I am hoping this new dr. tomorrow can guide me through the AP process.  I think I will not take any more Minocycline until I see her.  The headache I am experiencing is so intense, it's causing nausea and I am miserable!  So, I think you are right I will have to ease into this.  I really just thought I would be able to handle the higher dose.  Obviously not, ouch!  Thanks for your support…I may post later with more info. about my case and to find out more from Lyme sufferers here… 

[Michele]

Mag,

I wish there were a true formula we fit into, but finding our own tolerance seems to be the key.

The 200 mg dose every day is what rheumies prescribe for the anti-inflammatory effect. Since I didn't trust my rheum's dose level (I had already read the Scammell book), I started at 100 mg and the nausea was still awful. Drinking ginger tea helped a little bit. Ironically, my herx was mild compared to the herxing I had when moving down to 50 mg and then even further to 2 mg.

Even though the package says to not take it with food, you only lose a small percentage of the medicine, so if it helps to tolerate it with food, you might try that. Just avoid dairy for a few hours.

You might try pulse dosing every other day at 100 mg. Or even 50 mg. and work up. Tolerable is the key. A very experienced AP doc told me to start with a few mgs. and work up. His advice was to get up to 100 mg. Good luck with your doctor's appointment! AP docs with experience will titrate the dose to the patient.

I never lasted at that dose with the intense nausea as it was, but I've read some people toughed it out and it went away.

Another general trend to the dose I noticed with the AP doc in IA is the patient's prior treatment history. Those that were moving from a traditional DMARD like MTX he started at 200 mg of mino daily. So perhaps your 200 daily dose should be your target. Rookies with very little DMARD use, started at lower doses, especially if he suspected sensitivities.

I have kids, too. I think many who post here do, and there is a lot of empathy to go to you from folks on this board!!! Let us know how your AP doc handles your dose level tomorrow! I'm interested since I've had this problem, too.

Michele

[magsmc]

Michelle,

Thanks!  I  have not been on any meds for about 7 years, mainly as a result of pregancy, breastfeeding, and stubborness!  Before that, I only used NSAIDs.  So, I think my tolerance may be pretty low, and I will need to start at a much lower dose.  I am also interested to hear what this dr. says, I will update after the visit tomorrow.  I am still feeling pretty terrible tonight, with severe headache and nausea…I thought Herx was supposed to be an exacerbation of the arthritis…is it also what I am experiencing or are these just med. side effects, and how do you know?  I am not planning to take anymore  mino. until I get a better plan.  I do appreciate your feedback.

[lynnie_sydney]

Agree with the others' contributions. I wonder why so many docs think that more is better every time??? Hopefully your AP-wise rheumie can also help adjust you to a manageable and effective dose. 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)

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