Timeline for noticable improvement

[hollyanna]

I became debilitated with “arthritis” in October 2010 (it was a sudden onset). Currently, I’ve stopped taking methotrexate and I am now on an antibiotic (100 mg of minocycline 2 x day) and, though it seems like some improvement may be happening, any improvement is microscopic (or am I imaginging it?). I started 50 mg minocycline 2 x day on March 16 and upped the amount to 100mg on March 23.

Can anyone tell me when I might start to feel better? I know it’s a long haul, but I just can’t tell if this treatment is working.

[gordbentley]

I may sound crazy relentlessly promoting magnesium oil spray, but that truly was the swing factor to wellness for myself. i had excellent improvement in all my joints (99% better except for ankles) but my leg muscles and my ankles were pretty sore. anywho i applied the magnesium oil spray and havnt looked back. now everything is better fully. you may want to try this. furthermore look into heavy metals. especially amalgram tooth fillings which contain murcury and the type of plumbing you have in your house (lead pipes). or you may also have a candida issue? most often arthritis is a whole list of body issues, not just lyme or mycoplasma. if one environmental issue smacks your immune system out of wack then these opportunistic infections take hold and it can be quite a process getting everything back in line so look at everything that your life is involved in. even your teacups (ceramic/lead based) can be an issue. you just have to find the sources and get rid of them! I know all this because I got lead poisoning at work (pipe fitter/steel fitter) which gave me candida and some infection that took over, I treated the environmental and yeast issues first and then tackled the mycoplasma. i truly beleive you must address the environmental issues and food sensitivities before you tackle mycoplasma! best of luck!

[Maz]

@hollyanna wrote:

I became debilitated with “arthritis” in October 2010 (it was a sudden onset). Currently, I’ve stopped taking methotrexate and I am now on an antibiotic (100 mg of minocycline 2 x day) and, though it seems like some improvement may be happening, any improvement is microscopic (or am I imaginging it?). I started 50 mg minocycline 2 x day on March 16 and upped the amount to 100mg on March 23.

Can anyone tell me when I might start to feel better? I know it’s a long haul, but I just can’t tell if this treatment is working.

Hi Hollyanna,

Did you stop taking your mtx cold turkey or were you able to wean from it? It does take a few months for mtx to kick in, so you may not have reached full effects having been on it just a few months when stopping. Nevertheless, mtx can remain in the system for a month or two and there is usually some rebound to be expected if stopping it cold turkey. This can be rough, especially as you’re likely in the early herxing period. Also, you mentioned increasing your dose of mino, stepping it up quite suddenly from 50mg BID to 100mg BID. This is quite a large step up in one go and is also quite a large dose for a sensitive RAer. This is exactly what I did in the beginning, too! As a newbie, I thought I’d get more anti-inflam effect from the higher Harvard Protocol dose (100mg BID), but boy did I wind up in a mess 3 to 4 weeks in. I had to dial my dose down quickly and wait the herxing out. 😳

Are you managing the dosing on your own or with an experienced AP physician? Different docs will prescribe different dosing schedules, but usually the experienced AP doc will start low and slow with the dose, knowing it could precipitate a good amount of herxing. It’s quite a challenge then to have to dial down the dose and find an appropriate dose for the patient. It’s far easier to increase the dose in a more gradual way and settle on a good working dose. In Dr. Brown’s opinion, RAers functioned best on low, pulsed dosing in many cases, such as 100mg on a Mon, Wed and Fri or 100mg BID MWF. Doses can then be tailored and tweaked as time goes on should the dose seem inappropriate once the early herxing period ends…usually around the 6 to 8 month mark if no improvements in labs or symptoms has occured. It really is a counter-intuitive therapy…and the “low and slow” mantra is a popular one around here.

It can be pretty unnerving in the early months, as this is such a slow therapy. Brown demonstrates this in the documentary video (link is at top of forum) by showing the bone scans of a patient over the course of 3 years. The inflammed joints make a very gradual return to normalcy…he often said his patients could expect to see remission within 3 to 5 years. However, you are very early in your disease and have not been on immune-suppressive meds for very long, so my best fellow patient guess is that you should be starting to see windows of light after 3 months and, by 6 to 8 months, some improvements in labs and more sustained overall well-being. This is just a guesstimate, though, because there can be many variables in all this for individual patients, such as ability to detox, diet and food sensitivities, untreated coinfections, etc.

My best fellow patient suggestion at this point is to watch your symptoms closely for the next little while and you should be able to determine if intolerable herxing means you need to talk to your doc about lowering your dose. Also, as some mtx rebound might occur, it would be worth researching how you might best start working on detoxing, as your immune system kicks back in and more die-off could potentially begin occuring.

There is quite a bit of info in the Henry Scammell book, The New Arthritis Breakthrough, about titrating dose and tailoring the therapy to the patient and also some good info in the Historical and Current Protocol sections of the Physician Packets under the Education tab on the main site:

http://roadback.org/index.cfm/fuseaction/education.sub/subgroup_id=30.html

Hope something here might be of help to you, Hollyanna. There really is a wealth of info and some very experienced APers here if you find you need some support along the way. 🙂

[hollyanna]

Thank you so much for thoughtful replies. I am new (relatively speaking) to my rheumatic disease (even though six months of daily agony where there was none before seems like a lifetime) and the support I receive from RBF is the best thing that has happened to me. I am following a Lyme disease protocol right now (I have “soft positives” according to my LLMD) though I had some major candida issues during my last pregnancy that I may address with my LLMD. I also have a nutritionist (who is hesitant to work with me because antibiotics are not part of his program) who I will consult with regarding magnesium. Two of the hardest parts about this disease and treatment: 1. My LLMD is in NY (I am in GA) and doctors do NOT like to consult with each other. And, typically, doctors and nutritionists don’t get along so hot – so my antibiotic program and my nutrition program are fractured. 2. I never even used ASPRIN before this happened to me – so managing doses of medicine is not something I have experience in. The positive support I get here helps me realize that I’m going to get better. I am so grateful to RBF.

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