Home Forums General Discussion Three months in, gotten worse

This topic contains 4 replies, has 2 voices, and was last updated by  Shivam 1 year, 3 months ago.

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  • #458668
    Shivam
    Participant

    I have polymyositis. I tested positive for mycoplasma bacteria from pcr analysis at Clongen, but I don’t know what type. I’ve been on low dose antibiotics for 3 months (7 days of 300mg clendamyacin IV, then 3 months minocycline MWF 100mg once a day,, and azithromyacin Tuesday Thursday 250mg twice a day).

    Even though i’ve been on the protocol for 3 months, I have only gotten progressively worse. Every day I’ve been feeling weaker and weaker, and my blood work still indicates loss of muscle damage going on (CK, AST and ALT are higher than ever).

    Do I need to give the antibiotics more time? How much more time should I be doing thing before I throw in the towel. Any suggestions on what I should change? I don’t know what to do anymore, and my doctor is starting to doubt the antibiotics are going to work for me.

    Also, has anybody taken Rituxan and done the Antibiotic protocol?

    •Polymyositis - diagnosed Jan 2016 @ 24 yrs old - sudden onset; symptoms 1st appeared Oct 2015
    •tested positive for infectious Mycoplasma in urine; suspected to be sexually transmitted strain, as gf also had STD symptoms + arthritis symptoms for years that vanished with antibiotic therapy. I got sick shortly after we began dating.
    •Prednisolone (10 mg); Minocycline; Clindamycin IV tentatively every 6 weeks
    •Diet: Autoimmune Paleo;
    •Supps: Probiotics, Biocidin LSF, lysine, multi vit + mineral

    #458673
    Maz
    Keymaster

    Hi Shivam,

    The early months of AP can be incredibly nerve-wracking with the paradoxical worsening that occurs. How were your inflammation markers (SED and CRP) when you began treatment and have you had them measured recently? The dosing schedule you’re on is okay, but I’m wondering if you’re maybe going just a little too aggressively by adding the zith so early on. This is just a hunch. Brown talks about rheumatic tissues becoming reactive to die-off in his Hypersensitivity talk in link below. He’s talking about RA, but the principle is basically the same for other inflammatory rheumatic diseases:

    Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis

    Are you doing anything extra-curricula to detox? E.g. paleo autoimmune diet? Milk thistle, ALA, and N-AC for liver and L-glutamine?

    I’m asking these questions because the paleo diet, in combo with minocycline 100mg on M-W-F was enough for one lady with dermatomyositis who is virtually in remission after a pretty tough year of ups and downs and needing to taper off of one or two drugs, including prednisone. Sometimes, when worsening like this becomes intolerable, Brown (see Hypersensitivity transcript) would have the patient do a week’s washout of all antibiotics to allow the body a chance to get rid of the circulating endotoxins. It can be a good test, because if the patient feels better, then it’s likely the dose (or in your case, maybe the combo?) is too high and he’d re-start on either the same or a lower dose. If the patient feels no better, then it’s likely not a lot to do with the treatment, unless the dose is too low, and likely more to do with disease progress and it can take a while to slow down the freight train. In fact, in those sorts of cases, supports might be needed, like prednisone, to break through the inflammatory barrier.

    No one can tell you when you’re ready to throw in the towel, but there are a few things worth trying, if you have the patience, and a washout might be one of them, along with a really clean diet, like the autoimmune paleo diet, and a few supps to help the liver get back on track. Elevated liver enzymes could be a part of the PM picture, but helping the liver to detox can be a huge help during this process. In fact, I wish I’d known about this at the outset. I got Lyme, which got into my liver and sent my LFTs soaring. I was so unaware of everything at the outset as I was in too much pain to care, but my LLMD put me on three high dose antibiotics and by the next month my LFTs had normalized. That was a risk, but it is the kind of test an experienced doc will try, based on the patient’s clinical picture, if warranted. My herxing was monstrous in the first few months and I was in bed-ridden agony, but there came a tipping point, finally, when my highly elevated RA labs started to come down. The first year was not easy and I’ve had hiccups along the way (mostly drug reactions and thyroid), but I’m now in pretty good shape, apart from rickety knees.

    Well, you know we’re just fellow patients, so can’t advise you of anything, but in your shoes, I think I’d follow the advice of the master in his Hypersensitivity talk and see how I felt in a week and go from there. In the meantime, I’d get really serious about detoxing and diet. For PMers, it’s also quite important to keep the muscles moving, if poss, so gentle theraband exercises might help, or if you can stand it, some gentle water exercises in a warm pool.

    Has anyone looked at your IGs to see if you qualify for IVIG? In some cases, IVIG can give someone with compromised immunity just enough of a boost to help fight off whatever infectious culprit is at play.

    There is a new DM/PM Research section on site now, if you want to take a browse:

    Dermatomyositis/Polymyositis Research

    Have you requested an AP doc list yet, Shivam? Just wondering if there may be an experienced doc in your neck of the woods.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458674
    Shivam
    Participant

    Hey,

    I was diagnosed in Jan 2016. At that point, my CRP and Sed Rate were extremely high. I also had a positive ana panel with titers. Within a month of starting Prednisone 60mg, my CRP and SED were low and in range. I’ve been weening off Prednisone, and am down to 10mg, however, my CRP and SED are still low. Also, my ANA panel became negative after the year of prednisone?

    I’ve been following AIP since I got diagnosed in January 2016. (I sometimes get a little lenient, but i’ve been strict since starting the antibiotics). I’ve gotten food sensitivity testing as well, so I know that Shrimp brings tremendous inflammation in my body. Was not allergic to much else though. I’m also seeing a naturopathic doctor so i’ve been on quite a few supplements, including BioclidinLSF (don’t know if anybodys ever used that, its supposed to be very good anti-viral and anti-bacterial).

    My rheumatologist told me I could not do IVIG due to having beta-thalasemia. My functional doctor who was prescribing me AP does not believe that should matter, so I am planning on talking to another Rheumatologist. I do have the list of doctors you have, and have appointments with them coming up next week. Maybe it would help if I had a more experienced AP doctor, as the one I was trying to use has never done it before, but was curious.

    I’ve also been trying to go to the gym about 4-5x a week. When I consistently go, my strength lingers a little longer. I still get weaker, it just takes longer.

    •Polymyositis - diagnosed Jan 2016 @ 24 yrs old - sudden onset; symptoms 1st appeared Oct 2015
    •tested positive for infectious Mycoplasma in urine; suspected to be sexually transmitted strain, as gf also had STD symptoms + arthritis symptoms for years that vanished with antibiotic therapy. I got sick shortly after we began dating.
    •Prednisolone (10 mg); Minocycline; Clindamycin IV tentatively every 6 weeks
    •Diet: Autoimmune Paleo;
    •Supps: Probiotics, Biocidin LSF, lysine, multi vit + mineral

    #458675
    Maz
    Keymaster

    The beta thalassemia (what type?) probably complicates things for you as seems these patients are just more predisposed to infections. Are you having regular transfusions and chelating? From what I can tell from quickly reading about this inherited blood condition, blood transfusions can lead to autoimmune hemolytic anemia if the blood isn’t matched perfectly (some unscreened infections in the blood supply, like babesiosis, can also lead to autoimmune hemolytic anemia). So, maybe this could be why your rheumy is concerned about IVIG? IVIG is basically created from donations of blood plasma from over 1000 donors (to be FDA-approved), so it would be harder to precisely match you with a blood product like that. This said, plasma is different from red blood cells, so perhaps it’s not an issue? I’d guess that your hematologist would be the one to give you accurate answers on this.

    Here is one study re: beta thasalemia and IVIG.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140057/

    Your case sounds to be quite unique Shivram. E.g. If iron overload occurs from blood transfusions, this can cause all kinds of myalgia and arthlagia (similar to hemochromatosis). Iron overload also likely encourages microbial biofilm formation. Beta thalassemia patients are naturally predisposed to more infections so AP is a treatment that makes sense (for life), whatever else might need to be added (e.g Rituxan). I’d fathom a guess that there is more than mycoplasma in your mix and a good AP doc might be able to run some PCR tests to look for the genetic material of other microbes (including parasites) for you. Have you asked your functional doc about Artemisinin? Artemisininin in a carefully pulsed protocol might be worth checking out (anti-parasitic and cancer preventative as it is attracted to iron in the body). In a liposomal format (edta added), it can help break up biofilm colonies, too.

    You have some complicating factors, but you’re doing everything you can to stay in good shape. What kind of workouts are you doing st the gym, because weight training can elevate muscle enzymes. Also are you doing any form of detoxing to protect your liver and lungs?

    If you can, shivram, can you create a signature line in your forum profile to add your diagnoses (and dates), plus your current meds and supps? By sharing this info, it can help generate responses from others. E.g., if you do get iron overload from blood transfusions, you could be more predisposed to the minocycline-induced blue/gray skin hyperpigmentation. If your functional doc hasn’t got you on Buffered ascorbic acid, it might be a good idea to ask if it’s okay for you to help offset hyperpigmentation issues and better metabolize iron. Vitamin C also helps with detoxing and inflammation.

    Just a fellow patient and not an expert, shivram…just interested to try to help find puzzle pieces for folks to take to their docs. The above might or might not help, but I am rooting for you to turn your PM around and seems like the beta thalassemia is an important key.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458717
    Shivam
    Participant

    Beta thalassemia minor. I have never experienced any noticeable setbacks with my beta thal. My blood work shows that I am not having issues with iron overload, but I do have the other symptoms, such as low hemoglobin, low red blood cell count, small red blood cells, etc. I do not undergo any treatment for my beta thal.

    I will look more into how risky of an option IVIG is for me with my particular condition, but it is difficult to find someone knowledgeable.
    I will also look more into Artemisinin; I have never heard of it. Thank you for these helpful suggestions.

    My gym workouts are very light, involving some light cardio and light muscle training. For example, I can only bench press about 10 lb currently. I do lots of home floor exercises also, such as daily planks. Working out steadily has always seemed to be helpful in that it seems to slow the progression of my muscle weakness. I notice that when I go a week or so without working out, it makes a huge difference, and is usually the deciding factor between whether I am able to get up from the toilet on a particular day or not.

    I have so far undergone two rounds of clindamycin IVs. The clindamycin IVs both times seemed to lessen my muscle weakness and greatly improve my flexibility. After the first clindamycin IV, I could bend my arms and especially my legs in ways I had not been able to in many months. However, when I am only taking the minocycline and azithromycin, I get weaker and less flexible. With minocycline (Teva brand), I have diarrhea daily. It isn’t really bothersome, but it raises my concern that I am allergic to some component of it. I would like to try brand name Minocin and am willing to spend the $$$ that I know it will cost; do you have any suggestions on where I can look to find a supplier of Minocin?

    •Polymyositis - diagnosed Jan 2016 @ 24 yrs old - sudden onset; symptoms 1st appeared Oct 2015
    •tested positive for infectious Mycoplasma in urine; suspected to be sexually transmitted strain, as gf also had STD symptoms + arthritis symptoms for years that vanished with antibiotic therapy. I got sick shortly after we began dating.
    •Prednisolone (10 mg); Minocycline; Clindamycin IV tentatively every 6 weeks
    •Diet: Autoimmune Paleo;
    •Supps: Probiotics, Biocidin LSF, lysine, multi vit + mineral

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