PAH and sclero AP

[Mycoplasma]

anyone have success with getting better once they had PAH with sclero ?..I started going to Emory and the Dept head sclero doc and the PAH doc says its a waste of time..I need them to treat my PAH..but they will not redo my prescriptions for mino or Prednisone..and my old doc says there are too many cooks in the kitchen now and he will not renew any presc. either…right heart cath and multiple lung tests show PAH, lungs have a problem but the heart is what is causing my shortness of breath.

[Maz]

Brand new murine study in Journal Hypertension (June 2018) on PAH and Minocycline pointing to minocycline’s ability to modify neuroinflammation involved in PAH:

Involvement of Neuroinflammation in the Pathogenesis of Monocrotaline-Induced Pulmonary Hypertension

If you want to stay on your minocycline, have you tried searching for an AP doc on the Doctor Search page, Mycoplasma?

[Mycoplasma]

I had a mino doctor up until yesterday..he didnt want to interfere with Emory University..I have to see the Sclero dept at Emory again in a month and am going to ask them once again.

[kater]

I encourage you to keep searching elsewhere- don’t give up!
best
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Spiffy1]

If this is something you want to persue I would not stop until you find someone to do this for you. I have seen some posts on here that tell of pressures going down while on Minocycline. My dad had primary PH and you can bet that I would have him on Minocycline if I had him back. He would also never touch gluten or dairy again…very inflammatory…he would be on LDN and methyl folate….not the fake folic acid he was taking. My wisdom came to late, but it is not too late for you! Keep finding your way! Study study study! Make copies of articles that you can take to an existing or new doctor. This is your life. Sadly, no one else cares as much as you. Sometimes it is easier for docs to stay to the quote protocol because it protects them. I know you already know all this, but just remember that the doctors are working for you…not the other way around.

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

[Cheryl F]

Mycoplasma:

I completely understand that you are in a very difficult position. I have been in your position, or very near to it, 12 years ago. I won’t tell you what to do, but I will encourage you to be your own advocate. Educate yourself, make YOUR decisions for YOUR treatment choices. The doctors at Emory will very likely never agree with this treatment protocol, it is just not what they do. Other very experienced doctors DO USED THIS PROTOCOL. When my daughter was diagnosed with Systemic Scleroderma with lung involvement (never fully evolved to clear PAH but that was a maybe) we traveled to Boston to see Dr. David Trentham, who did the small study on this protocol and is mentioned in the book, Scleroderma, The Proven Therapy, by Henry Scammell. He worked in a Rheumatology clinic at Harvard and even his colleagues dismissed this treatment. My point, you just need to make this decision for yourself. If you choose to continue with the AP treatment, I would suggest that you TELL (not ask) the doctors at Emory that you will be doing this treatment. Do this politely and graciously. Tell them that you also value their experience and you need them to continue to monitor your overall health as well as the AP doctor is not an SD expert. I did this, and you can do it too. Bottom line, it is YOUR DECISION! You need the doctors to be your consultants, not your bosses!

I understand, with PAH in the picture, it is much more complicated to manage, you can’t just simply take Mino and forget about it. You may need to consider going to one of the most experienced AP doctors who would be able to manage this type of complex SD complication. I know Dr. F in Southern California has had patients with PAH and has successfully managed their recovery.

Anyway, this is just my 2¢. My daughter has been recovered for many years and I am very grateful that I made my own decisions for her treatment options.

Best of luck~

Cheryl

[Mycoplasma]

thanks for all the concern..I still have plenty of mino for 6 months or so..and with Emory involved am now on Adcirca I started about 2-3 weeks ago and today started Latairis..been oxygen for over a year too at night..adcirca is already working some…I have been studying for a couple years so am up on most stuff.

[Spiffy1]

I am just a fellow patient,but I hope you tell your doctor to stay on top of your blood work. Be ever so mindful of your liver enzymes and check your INR as often as you can. There is a kit you can use at home to monitor the INR. My dad got extreme relief with Flolan. It is a heap of trouble but fairly consistent. It is old school and you have to slowly increase it over time and you can max out on it. It can buy some time and help other medications, however. I hope you know of an excellent PH specialist. I could probably share his name here because he is not an AP doctor, but pm me if you want his name. My dad was in I think two clinical trials. I believe it was bosentan that he did absolutely amazing on, but his liver enzymes were in the 900’s. Of course, now I am educated enough to know why it was so effective. I am sure he had MTHFR like me and his liver could not break down the drug well so it built up in his system which allowed his blood vessels to relax and we thought we had it made. Of course, he had to come off immediately and it did hurt his liver. He was able to take a tiny amount of it though. Flolan was his first drug. Very successful, but the shunt, having to keep it cold, and mixing it every night, as well as having to wear a pack does get old. In his last years, he met with good success with sildinifil. I will be thinking about you. His PH was relatively controlled when he passed away, by the way. He successfully lived with it for 14 years.

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

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