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Maz, I have been reading a lot of your replies and you sound like you know a lot. I am a 54 year old male and was diagnosed with RA about 10 years ago. Did a few of the Biologics but did not want to go down that road. Upon researching , I came across the New Arthritis Breakthrough book and read it cover to cover in a day and I am not a reader. Started the AP approach with daily IVs for a week. Knocked me on my but for awhile but have gradually gotten better. My quality of life is OK, Still have some morning stiffness and my ankles and wrist are sore at times. I was forced to retire as a PE teacher as I could not chase elementary children around all day as it was wearing me out. My primary Doc agreed to write me the script for Mino. I have been pulse dosing MWF for about 8 years. I try to take probiotics on off days but forget at times. My blood work for the most part is pretty good with a yo yo of my inflamation teters. Sometimes close to normal and sometimes higher. My diet is not the best and I think that may be the culprit of my recent flare. I live in Michigan and right now the season is changing. I am in a little flare right now and am in need of some support and advice. Is it normal to flare during change of seasons and what can I do to get out of it? I am thinking of doing an elimination diet of just fruits and veggies, what do you think? When I flare I do get some throat issues like fullness in that area and sometimes I can feel some lung involvement. Is that normal during flares? Just looking for some support and advice, Thanks for your time in advance!
Chris in Michigan
Chris, is there any chance that your RA diagnosis was incorrect and you instead have a form of reactive arthritis? Can you share what lab markers you had and now have positive to confirm your RA diagnosis (I.e. were you seropositive for RF,anti-CCP, and/or ANA)?
By lung involvement, do you mean costochondritis-like pain?
Certainly, the cricoarytenoid joints, cartilage located on the backside of the larynx, can become inflamed in RA.
Have you considered doing another round of IV clindamycin? The description you gave that it knocked you back initially, but you improved after would seem to correlate with a good response to this antibiotic and route of administration.
Dr. Brown describes the case of Carol Lange in the book – she had a bad RA flare and he whoooed her back into shape with a round of IV clindamycin.
Are you working with an experienced AP doc out in Michigan, Chris? It can make a big difference to work with an integrative doc who can take in the whole health picture.
A couple other thoughts:
1. If IVs aren’t possible, some folk will instead add oral clindamycin (600mg twice on one day of the week as described in Pulsed Protocol packet here). Alternatively, a second macrolide antibiotic is sometimes selected (easier on gut), like azithromycin or clarithromycin.
2. Any chance the pharmacy changed your mino generic on you this past year? Some generics don’t work as well for some folks.
3. Probiotics aren’t optional while in long-term AP – according to my doc, they’re essential to maintaining good gut health. As you’ve been a bit erratic with probiotics, not entirely sure that a fruit-only diet would be the ideal due to high sugar levels and the potential for further feeding any fungal overgrowth in the gut.
4. Yes, once gut health is suffering, food intolerances can arise and some folks will either try an elimination diet, or something like the autoimmune paleo diet. There are a lot of different opinions about diet here, but in some instances it can be life-altering. E.g., for someone with AS, or PsA, cutting out starches and nightshades can help reduce inflammation. I’ve seen this happen with my MIL who had both types of reactive arthritis and within an hour or so of eating potatoes, her fingers would swell like balloons.
5. Yes, some people report that they experience regular seasonal flaring. It’s hard to say why this occurs as there are numerous variables, including seasonal dietary changes, viral reactivation/exposures, vitamin D levels, air pressure, etc. Low D3 levels can also lead to joint and muscle pain.
6. At 54, waning hormone levels might be worth checking. In men, testosterone seems to provide some protection against rheumatic diseases. Thyroid can also be doubly affected in rheumatics, so regular thyroid screening should be done (TSH, plus free T4 and Free T3), including testing thyroid autoantibodies. Low or high thyroid functioning can add to joint and muscle pain that mimics RA pain. Knowing if one has an autoimmune thyroid disease, like Hashimoto’s can be good to know, too, because there is quite strong indication that eliminating gluten can help lower these auto-antibodies to help reverse it.
7. Any recent stressors or infections? Any old or new tick exposures while outdoors or pets bringing them into the house?
About all I can think of right now, Chris, but would be interested if you have seronegative or seropositive RA. Reason being is that it might help in terms of figuring out diet and potential infectious triggers (to help to individualize AP) if there is any chance you instead have a form of reactive arthritis.
Maz, Thanks for the quick response. I am not working with an AP doctor as I do not know of one in my area. I went about an hour away to get the IV a few years ago. Maybe I can check to see if they are still there. I am taking a generic version of Mino, but I think I have always. Will have to check on blood work, gonna go soon to get more bloodwork at my annual physical. Should I request a certain test. Do not have very good insurace. Eitherway thanks and I will keep trying to get back on track.
Chris
Hi Chris!
Fellow Michigander here. Also had a flare start started mid september, though I dont know if that’s due to seasons changing or stress from traveling.The place you got your IV a few years ago is probably the same place I go to.
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, biocidinChris, please know that my ideas for testing are purely from a patient-perspective, because I am not a medical professional.
If you don’t have access to your original lab tests that provided the diagnosis of RA, it will be like starting from scratch. If so, then it may be worth asking your doc to get some basic rheumatic disease markers tested. Hopefully your insurance will cover these, but if not, there are private-pay labs that can do independent testing (these are run through legit labs, like LabCorp). E.g., Private MD Labs or Walk-in Lab, which have websites where you create an account and order any lab tests you want, and a doctor at the lab approves the testing requisition. You then select the local lab they use (like LabCorp) and, when the results are ready, they are then accessible on the created website account.
So, some basic labs I’d ask my doc to run (but you may choose not to) would be:
Basic RA Tests
ANA (anti-nuclear antibodies – base-line test to look for and differentiate between potential rheumatic disease types)
RF (Rheumatoid Factor)
Anti-CCP (Anti-cyclic citrullinated peptide antibodies)
CRP (C-reactive protein)
Sed-Rate (sedimentation rate)
Gene marker for Reactive ArthritisHLA B27 genetic haplotype (to look for genetic predisposition for reactive arthritides)
Thyroid Tests
TSH (thyroid stimulating hormone)
Free T3 (free and available active thyroid hormone)
Free T4 (storage thyroid hormone)
RT3 (reverse T3 can be elevated with lots of inflammation that blocks the thyroid’s ability to convert T4 to T3
Thyroid Peroxidase Antibodies (TPO ABs looks for autoimmune thyroid disease)
Thyroglobulin antibodies (Tg ABs looks for autoimmune thyroid disease)Iron and Vit D tests
Vitamin D3
A full iron panel (includes ferritin, serum iron, % saturation, TIBC – low ferritin can both block thyroid conversion and produce muscle and joint pain)Basic blood tests that should be run regularly while on AP
Complete metabolic panel (CMP) with liver enzymes
Complete blood count (CBC)Without a full rheumatologist’s work-up, these are just the labs I would want to get checked as a routine baseline for RA, but also to see if the RA was seronegative and may possibly be a seronegative reactive arthritis and if there is any sign of thyroid disease. Any labs that return positive could require further testing. E.g., if anemic, a few other things should be checked. You might also want to get some infection testing run?
Good luck, Chris! Let us know how you get on!
Hi Pinkmoth, I went to Dr N. in Lansing. Is that where you go? Thanks for sharing, September is about when I started to flare. I seem to be coming out of mine a bit. Good luck to you and stay in touch if you can.
Chris
RBF Admin Edit to remove AP doctor’s surname as per forum guidelines to protect physician privacy.
Hi Chris,
My primary Doc agreed to write me the script for Mino. I have been pulse dosing MWF for about 8 years.
How much mino are you taking, and what code is written on the pills?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPhil, I have been pulse dosing Mino on M,W,F 100mg in morning and 100mg at night for about 8 years. My prescription bottle has generic version and the pill has a 78 on it.
Hi,
My prescription bottle has generic version and the pill has a 78 on it.
The generic mino you are taking is made by Aurobindo Pharma Limited. Unfortunately, it does not have a good reputation on this forum. Is it possible that your pharmacy recently switched you to this generic?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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