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Good morning all. I have been hanging around RBF for about 2 years now. I went ton see a antibiotic protocol doctor and got on board with the minocyclin protocol and am still overwhelmed and in pain. I began the protocol by taking 1 pill per day and OMG did i feel like total crap! I stopped and have tried to start up again a few times and each time I have almost immediately began feeling like crap. I am so close to giving up and going to see a rhuematologists and starting DMARD therapy. I am so sick and tired of feeling sick and tired. Why do I feel SO bad when I have just a day or two under my belt? I have read about supplements and diet until my brain wants to explode and I have spent thousands of dollars on probiotics, prebiotics, tumeric, colostrum, vitamins and gluten free, dairy free foods that only I can eat and on and on and on…Im so disgusted and so ready to give in. Please share your wisdom with me today. Tell me how you went about your journey. Be specific. What supplements do you swear by and which were not helpful? What self help techniques do you find helpful? Anything you have found to help, regardless how small the improvement, I am all ears! I am just now 50 and live like I am 90 years old. Its so bleak to think this is the quality of life I have to look forward to. Anything you care to tell me about your progress I would be so grateful to hear!
Thanks
There are many rheumatologists that offer AP…just get a list from this website of doctors close to you. My rheumy kept me on prednisone and celebrex for at least a year while I was on AP. Sometimes you need a little help with anti-inflammatories/steroids for the AP to work and to help you get through it. I got off steriods slowly after about a year on AP. Also there are certain minocycline formulations that work better for some than others. I started first on TEVA brand generic until it was no longer available for a while…tried another generic brand and relapsed until I started using the Actavis brand now. Your brand of generic may not agree with you. They aren’t all the same.
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Hi Shannan;
If I take any antibiotic on an empty stomach,even after 19 years on AP,I am guaranteed to feel like crap also.If I eat first there is no problem at all.Just avoid foods high in iron and calcium.
Best thing I can say about food is to avoid any man made foods,nothing packaged,nothing canned drink water or pure juice and absolutely no fizzy drinks.If you don’t cook from scratch now is the time to learnHi Shannon,
It is overwhelming. No question. I have had many days where I break down in despair at the immense challenge of it all.
But from the beginning I have stuck with the abx through herxes. Like any therapy, it can’t help you unless you take it.There is always the option of reducing the dose to something that produces a more tolerable herx and ramping up dose over time. Maybe your doc would agree if you told him your herxes are really severe at the current dose.
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinI agree with Pinkmoth. Because you seem to have such a reaction to it, this may mean that you will be quite a responder to it. But do talk with your doctor. Many people have had to start on a 50 milligram dose or even less I have heard. Then they slowly work up. You are just going to have to develop a great working relationship with your doctor and he or she can be with you through these ups and downs. For me, I feel as though LDN has helped me and don’t plan to be without it unless my RA factor goes away. But even then I might not. Be sure you are on the correct methyl B vitamins. Perhaps get tested for MTHFR to see where you stand on methylation if your doctor will perform this test for you. Continue your diet until you know for sure it does not help. It can take three to five years to full detoxify from gluten. However, it does not seem to play a part with everyone. It did for me. Often times the celiac gene is paired with the RA gene whether or not you would be tested full celiac. (HLA Pattern)
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFBy the way in my signature are all the supplements I have taken a long the way. I keep them there so I can remember. But I am only on my special diet, minocylene, LDN, occasional multi vitamin and vitamin d right now.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHi
It really is overwhelming.
With reference to diet I wasn’t sure which option to choose. Some people advise a low fat high carb vegan diet, and others recommend a high fat low carb ketogenic diet that includes meat. It really did my head in.
The way I’m approaching it was to get some proper testing done. I had food tests, heavy metal tests, fructose test and a stool test done. From that I found I have mild allergies to wheat and casein and a huge fructose intolerance.
So my main problem is fructose which includes most fruit, sugar and fructose in packaged foods. So I’m following a Low FODMAP diet (which avoids sugars plus other things). What I’m trying to say is everyone is different, so if you can afford to get some tests that would be a great place to start.
If you can’t, the main culprits seem to be dairy and gluten. As another poster said, avoid all packaged food as well and cook from scratch.
Maddie 🙂
No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.
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