Home Forums General Discussion Week 3 of full 200mg mino per day…Feeling sick w/ increased muscle weakness

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  • #459324
    Wendy
    Participant

    Maz, thank you so. No, have not tried the colloidal silver drops, though did read of it earlier. With the history of shingles 3x in the eye, have been left with a neurotrophic cornea. This past week until Thursday had been able to remove antibiotic drops. Yesterday’s appt. was a backslide so am on 2 different drops 10 min apart 4x a day for the week- end. Any change in that little while dot in my eye, I am to call him immediately to be seen. Keeping the eye taped closed much of day to avoid having lid sutured closed. Hoping the zpac will have minimal abdominal pain.

    There is no improvement of reaction, winding down, as dose has been increased….continued dizziness long after pill should have passed its 6 HR or 12 Hr. Span in body. Only time not in pain/ lightheadedness is when I lie on my back. With the 150 mg. still experiencing leg cramps intermittent days apart, an ingrown toenail infection, tighter stiffer joints,especially in ankles, knees. Quads and hamstrings….so can stand for short periods of time. My posture has become bent over, pulmonary test 1st time indicated slight inflammation in lung…sure cannot take an immunosuppressant w/ eye in its condition now… and am having some shortness of breath. Usually it is late AM or afternoon before I would get behind wheel of car to accomplish 1 or 2 chores. Yes, Raynauds in 80 degree weather is still with me. Doing stretching exercises since other exercise is painful For bottoms of feet. Thus far, mino …even though Activis, previously Watson has not been a positive time and hate reporting such negativity. Cannot imagine how will get to the 200 mg. now almost 13 months+ into this.
    Thank you for reading.
    Wendy

    Systemic Scleroderma, Raynauds, Shingles 3x in right eye
    Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

    #459325
    Maz
    Keymaster

    Am guessing the eye doc suspects secondary microbial infection in your eye – that is, secondary to herpes zoster? Eyes are naturally full of biofilm, the slimy matrix that attracts microbial colonies and so just taking antibiotics without working on biofilms might be a dead end.

    I’m just a patient and can’t tell anyone what to do, but in the same boat, I’d add colloidal silver drops and, if tears were reduced due to secondary Sjogren’s, I’d be using it continuously in either a drop or spray formulation. It’s benign enough and cheap enough not to give it a try.

    If you aren’t noticing any reduction in symptoms after each mino dose increase and there is a good length of time between each increase in dose, it might be time to discuss a washout week with the prescribing doc. The goal is to kill the bugs, not the patient. My best guess about what might be happening (unless your generic is a dud) is that you’ve got a couple infections going on and it might be safer to add a second antibiotic and to lower the mino dose than to increase the mino any further, like clindamycin, which is used for skin, joint and eye infections (e.g. Uveitis caused by toxoplasmosis).

    For lungs, I’d find a good integrative doc locally who will do IV pushes of glutathione and would he able to help me with learning how to detox and who could prescribe LDN. I’d also add l-glutamine, curcumin, bovine colostrum, NAC, milk thistle, ALA, and systemic enzymes one at a time to gauge tolerability. Some natural antiviral might be worth checking out too, although bovine colostrum is pretty good for this. These are wonderful supps for SDers and any rheumatic disease. People who experience really rough reactions to mino who aren’t allergic, but get out of control herxing, are usually dealing with co-factors, like hormone imbalances, leaky gut, heavy metal toxicity, which block detox pathways, leading to extreme hypersensitivity as the toxins just build up and recirculate. Low thyroid function, fir e.g., also = predisposition to infection and more pain. It’s not treatment failure if there are other things blocking progress on AP. It just means going back to the drawing board with a good doc willing to act as a wellness partner to get the body back into balance in a gentle way, rather than just writing scripts, if that makes sense.

    These are just ideas of things I’d look at, Wendy, if in a similar boat, but would suggest researching for yourself to see what makes sense to you. The definition of insanity is doing the same thing over and over and expecting a different result. At this stage of things, it therefore makes sense to go back to the drawing board again and make revisions. Some cases are trickier than others and there are many who just take mino and expect it to be a panacea. For many it is, but when there are co-morbidities, longstanding disease, damage to reverse from some previously used meds, etc. the path to wellness can be more complex. It’s hard when so sick, but it is worth every penny of working with an experienced integrative doc, speaking from personal experience, who can help lift some of the burden.

    #459326
    Wendy
    Participant

    Maz, again thank you for your informative supportive suggestions. I will read all of this in the AM to absorb it more. My Opthamologist/surgeon is baffled by the return of the new ulcer, having it recede in a few days, and come back again…this one started April 3rd as a teeny white spot to r of pupil. If it opens again and is considered an epidefect, the reason for culture is to determine if it is bacteria or fungus, preferably bacteria …though am taking strongest drops for a bacterial infection. Now there is an infiltrate..extra cells or fluids…reason for having to be on drops. My eye is very toxic from the drops now….last night regimen of the the drops once an hour 4x before bedtime and Lotamax ointment before bed had to be. Add this to the other symptoms and feel pretty yucky.

    Early on you gave me a few names of integrative Drs. The one in town has never returned my calls and body does not have strength to drive very far. Have thought the mino may be pulling out bacteria and my immune system still not strong enough to drive it off. A friend had recommended graviola to build up system….have you heard of it? Whole foods no longer carries it but it is on Vitacost site. When had tried to move to the 200mg, that is when the breasts broke out wit a spider like rash… Lowered my doseage for a week and then nothing for a few days and rash completely went away and the mammogram was normal…what a stressful time in March! It’s taken a few weeks to get back to the 150 and its effects. As for other drugs over lifespan…very few…and that full thyroid panel at your suggestion was normal.
    Again thanks for reading.
    Wendy

    Systemic Scleroderma, Raynauds, Shingles 3x in right eye
    Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

    #459327
    sunny22
    Participant

    Hi Wendy,
    Maz is so knowledgeable…that’s why I call her aMAZing! She has great suggestions. Again I am so sorry about the issues going on. Keep us posted and let us know if you you have found something that is working or not working. Wendy, keeping you in my thoughts for improved health. SD is a real bummer but at least we have people here who understand. I am so thankful for that.
    Sunny

    #459362
    richie
    Participant

    Hi Phil really gave you the right advice —nifedipine which is a calcium channel blocker worked excellent for me foR Raynauds and I had had a real bad time with it –gloves in summer indoors –jacket etc –my internist gave it to me 17years ago now –still take it -and no problems —Its more or less a blood pressure med and every single one of them lists dizziness as a possible side effect -never had that problem –Strongly suggest talking to your doctor about it !!!!! One more thing –is the 50 mg minocycline the same manufacturer as the 100 mg —this is a new thiong of mine where I am starting to think its important to stay with one generic maker as long as it agrees –many pharmacists will fill rx,s with whats on hand etc

    #459376
    Wendy
    Participant

    Richie, thank you and am so aware dizziness is always a side effect in most drugs. Still dizzy from the 100mg. Of mino at 8:30 last night. Yes, both mino mg. are from Activis which was Watson. The pharmacist checked and cornstarch, yellow & red dyes are the fillers.
    Having my cornea scraped yesterday and having to use antibiotic drops every 2 hrs & a Zpac, I’ve left the 50mg off yesterday & today. Quite a bit of pain along w queasiness, chills, some indigestion added to dizziness! Having a conversation with rheumatologist on Friday. Recall,he is not an AP dr. but willing to let me use mino.
    A very tough journey.
    Thank you so, Wendy…

    Systemic Scleroderma, Raynauds, Shingles 3x in right eye
    Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

    #459700
    Nana47
    Participant

    Sorry to hear you are suffering so much. My husband has had severe RA for 18 months with very high markers. We stumbled upon Serrapeptase, you may want to do some research into it. My thinking is that this breaks down the bacterial Biofilms that are stopping the Antibiotic from working and potentially causing the side effects. Be careful taking magnesium when taking Minocycline. Look at the drug interactions on Drugs.com. My husband started the Minocycline in November 2016 along with Sulfasalazine. He has discontinued prednisone and Naproxin and now only needs Acetamenophen. He has had a couple of episodes of Atrial Fibrillation which was treated with Flecainide. He had multiple side effects to it and have discontinued that as well
    so I wouldn’t recommend Calcium Channel blocker for Raynauds. B vitamins usually help that. Husband also takes Bosweillia, Borage oil, fish oil, glucosamine and chondroitin and a few others. We think he was having a Herx effect early June when he got the Afib. Luckily at the ED the Dr prescribed Azythromycin for a week as I pointed out his lung issues, Low grade Temp and Elevated white count. I think that has helped kick this thing. He now has loss of appetite and has lost a lot of weight. So we have started to taper off the Sulfasalazine which he has not had side effects from until ?? Now. He takes one Serrazime 20000 twice a day away from food. Raw probiotics 50 billion daily and Saccharomyces Boulardi+MOS once a day. I think the three most important things are a) Serrapeptase b) antibiotic c) probiotics. He now has minimal or no pain. I also massage him with a home made therapeutic massage cream. I think the Serrapeptase would help with Scleroderma. But do some research.

    #459731
    Linda L
    Participant

    Has anyone else had experience with Serrapeptase?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #459732
    lynnie_sydney
    Participant

    Has anyone else had experience with Serrapeptase?

    Linda, if you type in Serrapeptase into search box at top of General Discussion first page (where topics are listed) all past discussion will come up for you to look through – and there has been quite a lot. You could also try ‘enzymes’ and ‘systemic enzymes’

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #459751
    Linda L
    Participant

    True. I’ve forgotten about it. Thanks.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #459771
    vinny
    Participant

    Back in 2007 when my Psoriatic Arthritis attack started my blood was hyper-coagulating. In 2008 I started taking Neprinol which includes Serrapeptase and Nattaokinase which resolved the issue. Toward the end of last year I stopped taking Neprinol because of cost. As time went by I noticed 3 things that were not good. My blood pressure crept up 15 points, my blood started hyper-coagulating again, and my erectile dysfunction became much worse. In March the technician could not get blood from my right arm and the flow was very slow from left arm. In April I started back on Neprinol and also added Lumbrokinase and the 3 problems were resolved. Lumbrokinase has been used many years in China and is supposed to be more effective than Serrapeptase.

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

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