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I noticed there is some discrepencies between each person’s schedule on AP. since all our conditions and our bodies are unique I understand that. But it seems that some believe a daily regimen is necessary while others do not. I am wondering why that is. Dr. Brown seemed to think that the tetracylines did not produce resistance and therefore pulsing the abx was fine so long as symptoms remained under control. Is there a reason why this opinion has changed? I am new to this forum and to autoimmunity so please forgive me if this has been discussed before but I am honestly seeking information and wisdom. thanks everyone
Hi SJJ, Have you looked at the FAQ from the main Roadback page?
https://www.roadback.org/faqs/ I think the question you want is 14 or 15.This is, of course, the big question for so many of us, whether to take a daily dose, or do the pulsed dosing.
Personally, I started on the 2x daily Harvard protocol, and I felt incredibly sick. I have sero-negative R.A. I wouldn’t say my inflammation got worse, but I was exhausted and felt almost flu like. I tried that for a week, then read more on the website and book, and decided to go to the pulsed dose. I tolerated that much better. I stuck with the pulsed dose for 5 or 6 months, and made pretty good improvement. At one point, I felt as though I was stalling in my improvement, so I decided to increase to the 2x daily dose again. I did it gradually, though I didn’t have any problems this time. I think it only took me a couple of weeks to get from 100 mg MWF to 200 mg daily. I’ve been on this dose for a few months now. I am making continued, though slow, improvement. Perhaps I would have done so on the pulsed dosing as well, I don’t know. My doctor wants me on the more traditional Harvard protocol, and as it’s working for me, I don’t see any reason to change back to pulsed dosing.
If you’re not working with an experienced AP doc, it seems as though you kind of have to figure this stuff out for yourself. That’s frustrating, I know. One option would be to try to contact Dr. S in Iowa, who is experienced, and I’ve heard will consult over the phone or through email. He is semi-retired, so doesn’t always get back to people right away. Some on this forum have travelled to Iowa to work with him. I can’t afford to do so, and as my protocol seems to be working, I’m sticking with that for now.
I know this doesn’t really answer your question. I’m sure others will chip in. But I wanted to give you what information I have at least. Good luck to you!
Hi SJJ,
Dr. Brown seemed to think that the tetracylines did not produce resistance and therefore pulsing the abx was fine so long as symptoms remained under control. Is there a reason why this opinion has changed?
Dr. Brown was wrong about bacteria not developing resistance to the tetracyline antibiotics. They can and do.
My personal opinion is that both approaches have value and should be used. I think it’s a good idea to start with pulsed dosing, either M/W/F or every other day (QOD). Many people cannot tolerate the full dose, at least initially, so starting at a lower dose can be helpful. After taking (for example) 100 mg of minocycline M/W/F for 30 days, one should have pretty good idea of how one’s body responds to the drug.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einsteinthanks for your responses guys. PhilC, do you have any links or articles that show resistance to tetracyclines? also, how would taking it daily prevent such a thing from occurring? I assume then, that you take it every day? thanks
Hi SJJ,
In this reply I posted a link to an article and explained what happened to me:
https://www.roadback.org/forums/topic/leflunomide/#post-375134Probably the best way to prevent bacterial resistance from developing is to take multiple antibiotics, and preferably ones that attack different biochemical pathways. I think a good long-term goal would be to eventually get on a multiple antibiotic regimen like those used to treat Chlamydophila pneumoniae (aka “Cpn”) infections or Lyme Disease.
Yes, I take 200 mg of minocycline every day. I also take trimethoprim. Hopefully, I will soon be taking tinidazole as well.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinSo how did you decide on those 2 particular antibiotics? and when is it you take them? I’ve seen people rotate antibiotics every few years but also people who have a monthy schedule of 2 or 3 different kinds…how do you know?
I have RA and was diagnosed August 2014. Started AP July 2015, 100 mg MWF. I have since increased to 100 mg daily. While on the MWF protocol for 4 months, I was herxing pretty badly, seeing some small improvements but overall not my best. I reached out to Dr. S in Iowa via email and he suggested I try an increase as well as some fellow members here. After increasing I felt better immediately and had 3 wonderful weeks with little to no pain everyday!! Then right at the 3 week mark I believe I began to herx. But the herx didn’t last nearly as long as when I first started mino in July. Maybe 6 weeks and now have felt great since the beginning of the year. I wake with little pain, maybe a 2-3 pain level and quickly go down from there. By the middle/end of my day I am at a 1-2 pain level. My problem knee is WAY better. I am walking fast all the time now instead of limping in pain every where I go. I can go down the stairs like a normal person instead of baby steps one at a time holding the railing. I can close my hand maybe 10-20 minutes after waking. I’m still on 7.5 mg pred which I have tapered down from 15 mg since Oct. Since starting to feel good on a more regular basis I am nervous about continuing to taper my pred but I know I have to. I think I will try to start going down to 5 mg in February and then 1 mg per month after that. I also want to eventually increase my mino to twice per day but will wait several months for that. My rheumatologist suggested that when I was ready to do that maybe do it slow by adding it twice daily MWF first for a few weeks. I am 6 months in and have definitely noticed HUGE improvements. I am definitely NOT where I want to be…I want complete remission and that is my goal but I am aware that can take years so I’m in it for the long haul. I hope this trend continues and I don’t plateau. If you have RA and have continued not feeling your best I would definitely recommend trying to increase your treatment to see what happens!!
Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pmthanks to those that have taken the time to answer! gonna try to keep this at the forefront of the board as i’d like to see different people’s schedules and hear how they decided on those particular abx. I’ve seen some interesting ones using pulses every 2 weeks of flagyl (i think this is a microglide) or one week a month adding an erithromycin type drug…why?
Diagnosed in Jan 2015 with systemic diffuse scleroderma, I sought out a doctor to help me with antibiotic treatment. I did not want to take the prescribed cellcept or methotrexate. Cheryl F. heard my frustration loud and clear on a post here when my rheumatologist told me he would not treat me with antibiotics. She called and told me the name of a doctor to consult with. I started with intravenous clindymicin in June 2015 for 5 days 2 X a day and was sent home with a prescription for a dose of two 100 mg capsules of minocycline every day.
About the middle of August, I developed head to toe hives. Crazy itching and skin flaking off. Called my doctor and he said to go to M-W-F two 100 mg capsules.
I am still currently doing the pulsed dosage. My scary swelling, red rash, sore joints, fatigue and hair loss have all gone away. I still have raynauds and hand stiffness. And, don’t laugh, but just noticed this morning while I was taking a shower that I can now spread my toes apart.
I was having moles pop up everywhere and even on my face. It was crazy. That has also stopped. I am guessing my energy levels are up by at least 85%.I would confidently say that I am going into remission. I pray every day for this.
Best wishes to you.
Hi SJJ,
So how did you decide on those 2 particular antibiotics? and when is it you take them?
Unfortunately, it would take too long to explain the reasons, and I simply don’t have the time right now. And since the reasons are fairly specific to my situation, knowing them most likely wouldn’t help you very much. However, I can give you a short answer: because doxycycline stopped working.
I take the mino once a day and the trimethoprim twice a day.
I’ve seen people rotate antibiotics every few years but also people who have a monthy schedule of 2 or 3 different kinds…how do you know?
You would probably have to ask their doctors to explain what their rationale for doing that is. They may be following a particular protocol developed by someone else, or it may be something they’ve come up with on their own.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI’m taking an in-between approach and it seems to be working for me- Rheumy wanted me on 100mg bid, I wanted pulse dosing with MWF- so we compromised with 100mg once a day- just turned the corner on month 4 and I have noticed a HUGE difference! Energy levels are up- pain and inflammation are down! I was on the MWF protocol years ago and never felt this good…
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Hi,
About the middle of August, I developed head to toe hives. Crazy itching and skin flaking off. Called my doctor and he said to go to M-W-F two 100 mg capsules.
I am still currently doing the pulsed dosage. My scary swelling, red rash, sore joints, fatigue and hair loss have all gone away. I still have raynauds and hand stiffness.
You should follow up with your doctor regarding your dose. It is likely that your dose reduction was intended to be a temporary measure to help you get over the rash and itching.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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