Home Forums Personal History and Progress Threads Ashley – Sjogren’s/Fibromyalgia

This topic contains 8 replies, has 1 voice, and was last updated by  frenchmoxie 4 years ago.

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  • #306672
    frenchmoxie
    Participant

    I was diagnosed with Sj

    #363269
    frenchmoxie
    Participant

    Started minocycline in December 2011 started zithromax in May 2012. Have not seen any improvements yet, but am still remaining patient and do realize that this is a long journey that we are all on.

    Was on a medrol pack in May 2012 along with small doses of prednisone (for a month or so) after the pack for an itchy rash that I’ve had on and off for about 3 years now. I have pictures of the rash if anyone would care to see.

    Sent blood into Igenex in June 2012, the results are below. Would love to hear interpretations of these results from people! As far as my doc is concerned, he will continue treating me for Lyme (minocycline – brand name – and zithromax – brand name-, maybe dropping the zithromax soon). Plan on dropping the Plaquenil and adding Flagyl in a week.

    Am only posting bands that I tested positive for or IND.

    IgM Result: Negative

    ** 31 kda IND.
    ** 39kda IND.
    ** 41kda +
    58 kDa +

    IgG Result: Negative

    ** 41 kda IND

    IgM 31 kDa Epitope Test – NEGATIVE

    Will be adding Flagyl in a week or so. Also, testing blood again for food allergies. This time for about 96 different foods.

    Other new-ish bloodwork results show no change:

    MCV still high. MCH still high. Neutrophils have increased a bit.
    Thyroid hormones dropping to their lowest point so far. I’ve read that this could also have been due to HPA axis suppression by prednisone usage.

    Sed Rate 2
    TSH 1.4
    RF 15.4 H

    #363268
    frenchmoxie
    Participant

    Today I just started taking A-BART, one of the Byron White formulas. I started off with just one drop in an ounce or so of water. I also purchased the A-L formula, but will wait to add that in once I work my way up with the A-BART formula.

    #363270
    frenchmoxie
    Participant

    Quit the Plaquenil about 1 month ago. Left knee pain has returned. The pain is only moderate, though. On a positive note, since quitting the Plaquenil my itchy rash has disappeared.

    I’ve worked my way up to 10 drops of the A-BART Byron White Formula. Can’t say that I’ve noticed any herx reactions. I do feel extra irritable and restless, however.

    A few days ago I added in the A-L formula. Now up to 3 drops. I can definitely say that this stuff feels “stronger” than the A-BART formula. No headaches or any other adverse reactions as of yet.

    Continuing with the minocin and zithromax, though not taking these as frequently because they do quite a number on my digestive tract.

    #363271
    frenchmoxie
    Participant

    Have quit the Zithromax and Minocin for right now. Plan is to get some more bloodwork done ASAP, I’m thinking another try on the Igenex Western Blot. I’m wondering if maybe the reason that not much showed up on my previous western blot was due to the fact that if I do have Lyme, the bugs were probably in defense mode (cysts) because I had been on antibiotics for almost 6 months (constant assault) with no use of Flagyl and was only on 200mg of Plaquenil.

    I’ve also been looking at Fry labs bloodwork. Since my doc seems to think that I might have Bartonella, I’d like to finally get some bloodwork for that. I know Fry labs will do blood smears, and I think that’s definitely worth a shot.

    Finally convinced the doctor that my T4 and T3 levels were too low and am doing a trial of NatureThroid right now. Started Oct. 6th at 1/4 grain.

    Food allergy test results back show a ridiculous amount of allergies. Kind of surprised. However, not many of the allergies are from things that I frequently (or ever) eat. As suspected, I am VERY allergic to coffee and still showing high reactivity to YEAST. What was surprising are my allergies to things like cauliflower, watermelon, all citrus fruits, carrots, squash… what the hell?

    #363272
    frenchmoxie
    Participant

    I recently had bloodwork done through Fry labs and the results showed protomyxzoa rheumatica and substantial biofilm. I even have photos! In addition, I was found to also have Anaplasma. Finally, some answers!

    Have quit all antibiotics as of 2 months ago. Will be starting Nystatin for candida/yeast issues and then introduce Doxycycline. I’ve been on Minocin in the past, but find it hard to tolerate (GI pain).

    After starting the Doxy, plan is then to introduce Malarone, an anti-protozoal/anti-malarial drug. I’ve been on Plaquenil for so long (about 4 years) and do believe it helped me. However, I would love to give something else a try seeing as how I’m still battling these bugs even after being on the Plaquenil for so long.

    #363273
    frenchmoxie
    Participant

    I’m a bit ashamed to admit that I’ve been lazy with following my treatment plan. I last saw the doctor in December. Through my own research I started Artemisinin and Lumbrokinase and Nattokinase (biofilm busters) in January. Cymbalta dosage has also been reduced to 40mg. I’m alternating the Lumbrokinase and Nattokinase every other day. Have yet to work my way up to my daily goal of 500mg of Artemisinin. I am rotating that out every 7 days to avoid resistance. I’ve been on pain meds the past few months, so as far as any herxing goes, it would be hard to tell. Though, lately, I have been having bouts of low-grade fevers and hot/cold flashes. Could be some herxing there.

    I don’t think I gave Flagyl a fair trial this past fall, so I’ve restarted it. Starting at 250mg a day, would like to quickly work up to 500mg a day. Since my desire to take Flagyl was the reason for quitting the Plaquenil… I need to give it another go.

    As for clean-up agents, I’ve added chlorella tablets as well as vitamin C powder (1,000mg/day). Still continuing with D-Ribose powder for muscle pain. Switched multivitamin from New Chapter to Country Life.

    #363274
    frenchmoxie
    Participant

    Have quit all antibiotic treatment, been on nothing for the past 3 months or so. Recently had testing for MTHFR gene mutation and am heterozygous for A1298C mutation. Will be treating for methylation problems before resuming any kind of bacteria/viral/protozal treatments. I also went ahead and paid the $99 for the 23andme.com genetic testing. Hopefully I will be able to find more information regarding my methylation cycle mutations.

    #363275
    frenchmoxie
    Participant

    Still treating MTHFR mutations. Also found out I am homozygous for a vitamin B12 transcobalamin receptor. I guess this means that I need to supplement with even more B12 than before. I have had a hard time making progress with the Yasko protocol, and found I cannot tolerate the SHMT capsules, but am still taking the SHMT spray (but have been off of it for 1 month due to it being out of stock on website). I just started the CBS mutation capsules about 2 weeks ago, taking one every other day. I have also added Amino Assist nutrient absorption capsules to my regimen, and no longer taking grape seed or pycnogenol.

    New symptoms of bladder irritation and more frequent urination, including waking up in middle of night to urinate which has never happened before. It hurts to urinate but not in the “i have a bladder infection” way, it’s like my ACTUAL bladder and/or ureters which had/has endometriosis on it.

    I plan on re-starting my Plaquenil again, since I have been off it for about 1 year (wanted to take Flagyl and read that chances of neuropathy/nerve damage increase when taking both meds together). Last time I started my plaquenil I had headaches for about 1 month straight, which I am now realizing might have been a die-off reaction from either the Lyme/protozoa. Will be interesting to see if I get headaches this time around. I took 2 days worth of plaquenil a few days ago, so 200mg per day, and had a headache all yesterday and early today. Might have to start with just 100mg.

    I’ve been getting acne really bad the past few months as well. Assuming my hormones are all whacked out of shape. STill taking NatureThroid, 3 of the 1/4 grains per day, but would like to increase seeing as how my T4 levels are still in the low range at this dosage. I’m worried my adrenals won’t be able to handle the increased dosage of thyroid meds though.

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