Home Forums Personal History and Progress Threads Maz – RA/Lyme disease

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  • #300070
    Maz
    Keymaster

    My RA story begins on Labor Day Weekend 2006 with two oval rashes on midsection. Within two days, I started with general malaise, flu-like symptoms, swollen glands, headache and stiff neck. Two weeks later, severe migrating arthralgias and myalgias. First Lyme ELISA test was equivocal (inconclusive). Two weeks later (approx. 5 weeks after initial Lyme infection), second ELISA also returned equivocal, but primary care physician finally agreed to prescribe doxy for one month due to bad chest infection. Within 24 hours, herxing was so severe I couldn

    #311071
    Maz
    Keymaster

    Long overdue update!

    Continued on Minocycline 100mg BID MWF and Azithromycin 250mg every 10 days for 16 months from December 07 thru to March 09.

    I did very well on this combination, until around Christmas-time 2008, when I started to experience an increase in migratory muscle and joint pain. Although my RA bloodmarkers continued to improve nicely, I began to suspect that something was not right. I decided it was one of two things: an unresolved coinfection of Lyme that was rearing it’s ugly head or minocycline-induced lupus. Without wanting to put the cart before the horse, I decided to take a one-month break from minocycline to see if my symptoms were related. Almost immediately I began to feel better and the strange, very debilitating symptoms resolved quite quickly. However, when I got my blood results back for March, although my cardio CRP had reached an all-time low of 3.8, my anti-CCP and RF began to go steadily up again…quite quickly. At this point, I tried to resume minocycline and took 100mg. Within 4 hours, I started with a very severe serum-sickness-like reaction; racked with all-over body pain and a high fever of 101.4. This lasted for 48 hours and I did not take any more minocycline. Wondering if it was coincidental, I re-challenged the mino at 100mg two weeks later. Again, I experienced the same reaction. Wondering if I had developed a bad case of hypersensitivity, I rechallenged 2 weeks later with 25mg mino, but the reaction was just as bad.

    At the end of April, when my doc called with my April bloodwork, I shared my experiences with him. He was very concerned and we discussed minocycline-induced lupus or that I may have developed an

    #311072
    Maz
    Keymaster

    Another Long Overdue Update:

    By October 2009, it became apparent that my abx regimin of doxycycline 100mg BID MWF and azithromycin 250mg BID T & Th was not as effective as minocycline and azithromyin had been and RA and Lyme symptoms were creeping back up. 🙁 Therefore, my LLMD switched me out to a new protocol:

    October 2009 to May 2010:

    Moxatag (extended release amoxicillin) 775mg BID
    Diflucan 100mg BID

    Within 3 days, I began another 5 week odyssey of herxing, which was intense and included extreme fatigue, malaise, and increased muscle and joint pain. However, after this point, my RA symptoms again began to remit and my anti-CCP which had zoomed up into the 200s again was coming down by 40 points per month. I began to plateau out in April/May with increasing night/day sweats and migraines, so again, we switched to a new protocol, as my doc suspected babesiosis.

    June 2010 to January 2011

    Mepron 5ml BID

    Azithromycin 250mg BID

    Again, the herxing was pretty intense for several months. This time, the existing symptoms (sweats, chills, migraines) increased to almost unbearable intensity, but then fell off around the 3.5 month mark (mid-Sept). I continued on the regimen, as I seemed to be holding pretty steady, but once again, my RA symptoms began creeping back in.

    In January 2011, therefore, we switched back to my original protocol, as follows:

    500mg tetracycline BID

    500mg biaxin BID

    Plaquenil 100mg BID

    This time, I responded swiftly and within 2 months, my labs and symptoms were back on track again. As of today, my RA is well-controlled and, in retrospect, it’s pretty clear that the coinfection of Lyme, babesiosis, had been interfering with my therapy. I am still experiencing some cyclical herxing, but it is mild, predictable, and these herxes only last for between a few hours to 24 hours. A good FIR sauna session seems to burn out the toxins very effectively.

    Current supplements:

    Vit D3 gelcaps 6000mg daily

    NAC (N-acetylcysteine) 600mg daily

    Milk thistle

    Astaxanthin

    Probiotics PB8 (8 capsules) daily, spaced 2 hours well away from abx

    TriSalts when needed to help with alkalizing/detoxing

    B12 and B Complex daily

    Liver flushes and colon cleansing have been an invaluable tool in my arsenal knocking out flares overnight! Here is the protocol I have used, though I have not purchased any of the supps apart from Oxy Powder, which is a wonderful intestinal cleanser:

    http://www.globalhealingcenter.com/liver-and-gallbladder-cleanse.html

    Last year, I invested in a portable FIR sauna and use it every other day now. It has become a lifestyle choice and I have found it beneficial for joint/muscle pain reduction, improved circulation/BP/cardio-vascular health/skin tone and, most importantly, it speeds along recovery from cyclical herxing that goes along with chronic Lyme by removing unwanted toxins. Here is a link to the model I purchased, though they range in price from $300 and up into the thousands for the more elaborate models. The ideal type is the carbon-paneled variety, which seems to provide more even, radiant heat than the ceramic-heated variety and will not burn skin if touching the panels. 🙂

    http://www.evolutionhealth.com/Infrared_Saunas/fibercarbon/infrared-sauna-1personCarbon.html

    Last additional note: I decided to try LDN (low dose naltrexone compounded by Irmat Pharmacy in NYC) and took it between Feb – Nov 2010. Starting at 2mg and increasing in small increments of .5mg every 2 months, I got the dose up to the highest recommended dose of 4.5mg. While I feel it had some benefit in reducing symptoms and did produce some herxing each time the dose was increased, I continued to have some neurological problems – namely night tremors and symptoms of sleep apnea – and decided that these and persistant insomnia outweighed the benefits. I stopped cold turkey in Nov and had no ill effects and began to sleep much better. LDN has been beneficial for many with RA, but in my case I think it was exposing some neurological Lyme symptoms that just weren’t very pleasant to deal with. I may make a return to LDN at a later date and have not dismissed it from my arsenal.

    It has now been 4.5 years since beginning abx therapy for my very severe RA and, apart from some minor residual swelling in one knee and one ankle, I feel I am very close now to remission in both labs and symptoms – all without the use of any form of immune-suppression. I won’t say the journey has been easy, but it has been one I have been invested in from the beginning and feel it has been worth every step taken along the way.

    #311073
    Maz
    Keymaster

    Detox methods I’ve found helpful.

    1. Glutathione IV push

    2. IV Myer’s Cocktail (high dose nutrients)

    3. Undenatured whey protein (to boost glutathione levels) – products such as Immunocal, ImmunoPro or Warrior’s Whey…important to ensure whey is harvested from “organic” grass-fed cattle with no additives.

    4. Far Infrared Saunas (aka FIR saunas)

    5. Epsom/peroxide baths

    6. NAC (N-acetylcysteine) capsules to reduce fibrosis and, as NAC is a precursor to glutathione, will also help with detox.

    7. ALA (Alpha lipoic acid) – anti-oxidative capsules

    8. Systemic enzymes (taken on empty stomach) such as serrapetase or nattokinase. I’ve used Neprinol, which is quite expensive, but it is promoted for RA as a fibrinolytic/proteolytic supp to reduce inflam and fibrosis.

    9. Krill Oil gel caps (said to be more bio-identical than fish oil)

    10. Astaxathin gel caps

    11. Coffee enemas (first used by Dr. Gerson to reduce pain in cancer patients…coffee is absorbed by hepatic portal vein and is thought to promote glutathione).

    http://www.coffee-enema.ca/

    12. Liver/Gall bladder flushing (not for anyone with kidney issues due to magnesium content in epsoms) and lemon/olive oil detox drink (which acts as a slow liver flush when used daily).

    13. Colonics – I haven’t tried these, but some AP docs are using these in a series to clear toxic waste from the gut…need to be careful to replace good bacteria after these (some colonic hydrotherapists will do a probiotic flush into the gut after the colonic).

    14. Lots of good old fashioned pure water.

    15. Ensuring never to get constipated. If I do, I use Oxypowder capsules (ozonated magnesium)

    16. Good, clean fresh diet of lots of fruit and veggies, being careful to watch for food offenders, such as gluten and dairy, which seem to be the most common ones.

    17. I’ve also started using a supplement, called Slippery Elm, which is purported to help heal the gut lining, as leaky gut can be a problem for many rheumatics.

    18. Opti-Cleanse, as prescribed by my doc: http://www.xymogen.com/2008/formula.asp?code=000262

    19. Pekana Basic Detox and Drainage Kit: http://www.forresthealth.com/big-three-detoxification-drainage-kit.html?&cat=301&featured

    Here is a link to an AP doc in NYC who specialises in Leaky Gut with suggestions on how to heal and protect the gut.

    http://mdheal.org/leakygut.htm

    As with everything we do as rheumatics, the low and slow approach works best, and I wouldn’t try to do more than one thing re: detoxing at once so that I could determine what was helping and what wasn’t. So, a nice, slow, measured approach in consultation with a treating physician is the optimal way to go when trying something new of this ilk.

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