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  • #464900
    SherryP
    Participant

    Hi All! My husband has systemic scleroderma and has been trying to follow the antibiotic protocol with our local primary care dr. He started taking minocycline back in 15, switched to doxy and is now back on mino as well as azithromycin. He has battled the extreme fatigue all this time and I really cant see any real signs of remission. He has developed PAH during the course of this and is taking sildenafil for that. He can sleep for DAYS! He thinks it is the mino causing the fatigue. Any help you can give us would be greatly appreciated! He has posted before under the name “mycoplasma”

    #464901
    Luck20
    Participant

    It took me over a year on AP to really start to get energy back. It’s still not 100% back but at least 75%-80% of my energy is back and my ck and aldolous levels are no longer high. Did he get diagnosed with myositis too? That can seem like fatigue but really be muscle break down.

    So he’s been doing AP for 4 years and the disease is still developing? Does he have skin hardening?

    In addition to mino and azith, I also used pulses of tinidazole 2 days a week. Iv’s of clindamycin is another option and I read of people pulsing the herb Artemisia as well.

    Has he been tested for lyme or is there a possibility he has it? Everyone is different and that’s what makes this such a challenge. I think that’s why mainstream medical drs shy away from AP because each patients treatment needs to be tailored carefully.

    Hang in there and I hope you both start to see improvement real soon!

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464902
    SherryP
    Participant

    Thanks for replying! In some ways he has improved. His gerd is stable with omeprazole, no more esophagus issues, no incessant coughing, in fact he rarely coughs now. He isn’t in any pain, maybe due to the LDN. It is just this sleeping and overall lack of energy that has me concerned. He is on O2 24/7, uses a CPAP machine at night. His O2 sats drop with any exertion which is due to the PAH. Have not really looked into Myositis but his muscle tone is gone overall.

    #464903
    Luck20
    Participant

    Wow, that’s rough.

    I don’t know a lot about PAH but I assume that’s what’s causing the exhaustion…is that what the drs say?

    There can always be an element of depression too. This is a rough disease to deal with and sometimes a bad day can turn into many.

    Regular heart disease, blood sugar issues and diet can trigger problems as well. Sometimes we have more than one issue going on. Is he working with a functional medicine doctor?

    Sorry I don’t have any great suggestions.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464944
    Spiffy1
    Moderator

    I would lay bets that it isn’t the minocyclene. Fatigue is a hallmark symptom of autoimmune and PAH. I am a little surprised he is only on one of the PH drugs. Is he seeing a specialist? My dad went to Dr. Ben D. who is still specializing in PH. He is not an AP doctor but boy did he keep my dad going. There are so many other drugs out there. I am sure you have heard of Flolan. It is the old gold standard. But it can certainly buy some time while you figure things out. There is Tracleer and Bosentan. This doctor was at Oschners in New Orleans when dad was seeing him. Not sure where his office is now but I just looked him up and he is still practicing. He gave my dad so much hope when everyone else had given up on him. He successfully navigated PAH for 14 years. PM me if you are interested in this doctor.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464949
    SherryP
    Participant

    Thank you Spiffy1. He was evaluated at Emory for PAH and was put on Adcirca and Letaris which almost killed him. I finally took him back to our regular PCP who reinstated the antibiotic protocol and sildenafil. I think I have found the culprit: he is tapering down off of prednisone. I know a couple of times in the recent past he tapered way too fast and was almost in an adrenal crisis. He has gone from 25 mg down to 7.5 at the present and with each decrease in dosage he tends to sleep even more. He feels fine when he is awake, besides the breathlessness from PAH. I think if we can manage the taper he will eventually get through it. He is also trying Cellcept again at a very low dose to start. I read where one lady used awhashghanda (sp?) to help her get through it so I may look into that.

    #464961
    Linda L
    Participant

    How PAH has been diagnosed? It is bery rare Could it be asthma?

    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

    #464962
    Spiffy1
    Moderator

    Linda, most likely by this specialist it has been confirmed with a heart cath and echocardiogram. They can check his wedge pressure in the heart cath lab and pressures on the echo. Sadly, uncommon is not impossible. And it is my belief that as a society we need to let go of the opinion that it is so uncommon. I think in the early days it just wasn’t known and then slowly doctors have come around to diagnosing more and more. I know too many people with it for it to still be labeled uncommon. It sounds like he is under good care! I am so glad that you think you have found something that may be contributing. I am hopeful as he adjusts to his new prednisone levels he can get relief. My dad was on sildinifil and was doing really well with it. It is nice that it is a pill and not a tube pack like Flolan. But if you ever need relief for him my dad also did very well on Flolan. It is not the easiest to work with keeping it cold and mixing every night and wearing a pack 24/7. But it is an amazing drug as far as 6 minute walk test and quality of life is concerned.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464964
    Lynne G.SD
    Participant

    Hi Sherry;
    I am surprised that he is not doing better after 4 years on AP.I had a major regression years ago when I failed to notice that my pharmacist put me on a different generic.Capsule was the same colour as the good one but in just 5 months I was almost back to square one.Many generics are duds when it comes to this disease.Phil,a member here often posts on the various meds we use.Look through some of the older posts.

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