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Hello everyone! I just wanted to share with you what I’ve done wrong so that others don’t do the same thing.
It was about 3yrs ago in my desperate search for answers and a solution that I found out about the antibiotic protocol and read the book. After reading the book I only had a basic understanding of how to use the antibiotic protocol but I was excited and determined to find a way to try it out. I found a Dr who said they were somewhat familiar with the protocol and was willing to prescribe it for me. I knew that you were to start out at a pulse dose of MWF schedule but that was about it. After about 9 months being on a pulse dose I didn’t notice any difference so I decided to up my dosage to every day Mon – Fri. This is when things began to turn around for me. All was going really well for about a year and then little aches and pains began to creep back in. I wasn’t sure what was causing it but had suspicions that it had something to do with a change in my thyroid medication due to my previous being no longer available. At this point, I didn’t know what the next step was to be as far as taking the antibiotics so I asked my Dr. She had told me that I could go up to taking the Minocycline 2x a day every day if needed. Not really knowing any better I trusted that this would be ok. Over this past winter I began taking a 2nd dose of mino on MWF and 1x a day for the rest of the week. Gradually things began to get worse so after a few months I decided to take the full dose according to my dr of 100mg 2x a day every day. My RA has since escalated rapidly to the point where I have had to add in Celebrex, Tylenol Arthritis, and eventually get back on prednisone just to be able to somewhat function on a daily basis. While at my worst I decided to dig back into the book and this website and it was only then that I discovered that there are more detailed instructions on how to take the antibiotic protocol. I learned that taking the Minocycline every day was a BIG mistake and is probably what has caused my RA to worsen. So I made another appointment with my Dr to discuss what I should do next. At this point I have now been dealing with some pretty severe pain (although not nearly as intense as before I started antibiotics) constantly for several months now and honestly I’m just so desperate for relief. At my appt yesterday my Dr was concerned about the amount of inflammation I have and has suggested a biologic. I don’t think she is interested in digging into the protocol to find a way to keep it working for me as she is too concerned now about permanent joint damage and getting my RA back under control. While we wait for the approval of the biologic, which will take between 2-3wks, I told her I was going to go back to a pulse dose to see if that would help in the meantime and she was ok with that. I hope it does. I still believe in this protocol wholeheartedly as I know for a fact it was working for me at one time, but I just don’t have a way to do this on my own and currently don’t have a dr who knows enough about the protocol to make the changes that are sometimes required. The Dr’s in my state don’t accept insurance so I can’t afford to see them right now since I’m not working. I will still be taking the mino while on the biologic for now and will hopefully eventually be able to see a dr who knows more about it in the future and can get me back on track. I just wanted to share this with all of you so that no one makes the same mistake as I did.
Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (RAwarrior, very sorry to hear about your relapse. It can be tricky to work with an inexperienced doc at times. Do you have any recent RA marker labs to compare against when you started AP?
The thing about AP is that it’s not immune-suppressive, so won’t prevent flares from occurring. Over time, though, they should get less intense, shorter in duration, and less frequent.
It would be good to know if your RF, anti-CCP, ANA, SED rate, and CRP are improved or not. Rather than changing mino dose, there is also the option of adding IV clindamycin (as Brown did in book for Carol Lange) to give the flare a good zap, or to add an oral macrolide.
Checking labs for DILE at intervals isn’t a bad idea either. Although uncommon, it’s just one of things to watch for over time.
Hi Maz, thank you for responding. She drew some more labs yesterday as well as another Vectra DA so I will get those results in a week or so. Before I started AP my Vectra RA score was a 42. We re-drew my labs after being on AP for about a year and my Vectra score was all the way down to a 25. I felt so much better too. That’s why I believe so much in this protocol…there was proof it was working. I truly believe I made it worse by taking the mino every day. According to what I’ve read about the Mycoplasma, is in doing that it will release more antigens and cause the Mycoplasma to increase. I would’ve been willing to try another antibiotic, even through IV or IM if I had to, but my Dr is not experienced or interested with those methods. She is a wonderful Dr, don’t get me wrong, she just doesn’t have much experience with AP but is still willing to support my efforts. I had just visited her less than 2 months ago to see if my worsening was due to DILE so she tested me for that and it came back negative. For right now, I have to invest in my quality of life. My hope is to get my RA to quiet down enough for me to go back to work and bring in an income. When I do, I plan to seek out an AP experienced Dr who will oversee my next go at it.
Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (Yes, you’re right that microbial hypersensitivity, as described by Brown (both in book and in hypersensitivity article under Resources) can occur with increased dosages in some folks. In those instances, Brown did a washout period. If patients felt better with a week or two off, then this provided answers.
Any chance your generic was switched on you at any stage?
Yes, I had checked with my pharmacy previously and they said my generic has always been the same. Made by Torrent I believe? I don’t have the bottle right in front of me to confirm that.
I got confused and was thinking the washout was to give your body kind of like a reset so you can start over, so that is good to hear. Maybe I will try that then and see if I do better. At this point it wouldn’t hurt to try. Thanks for your help, Maz
Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (In 2015, Ranbaxy (an Indian pharmaceutical) divested itself of generic minocycline to Torrent. There had been probs with the Ranbaxy generic not meeting quality standards prior to selling to Torrent in the US. Folks using Torrent say they are currently happy with the new incarnation of this generic brand but some are finding other generics more effective. It’s tricky keeping up with all the generic mino acquisition-mergers, such as
Zydus (was Teva) and the new Teva (old Actavis, which was old Watson), I think.Is it possible a different generic might be worth a try? You could jot a post to ask others which generics they are finding most effective right now. Keeping up with all this can be critical for some as even slight variations in dyes or fillers being used can cause probs for some folks. Just a thought and hope something might help!
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