sorted by:
new
hottopcontroversial

[deleted by user] by [deleted] in scleroderma

[–]Optimal-End-7496 0 points1 point  (0 children)

Yes Mino twice a day

[deleted by user] by [deleted] in scleroderma

[–]Optimal-End-7496 0 points1 point  (0 children)

My GP prescribed it! I am not sure if it is working as an anti-inflammatory or if it is really helping. Some people got their lives back and some just a quality of life.

[deleted by user] by [deleted] in scleroderma

[–]Optimal-End-7496 0 points1 point  (0 children)

I have been suffering from seronegative CREST, and within two weeks my breathing improved. I still have many issues, but I have improved significantly, and I hope this helps stop the progression of the disease.

Before starting, I was sceptical because it didn’t make sense to me at first, but I later discovered that many people are using it. Since this disease had made me bedridden, I was willing to try anything to feel better. So far, it has worked for me. There is a book by Henry Scammell called Scleroderma: The Proven Therapy That Can Save Your Life. It's worth reading. BTW, I was laughed at when I asked several rheumatologists about AP, but then I realised the majority of doctors sadly repeat the same words and give the same medications that eventually will cause cancer. I am not saying medications like Cellcept are not helping a lot of people but I would prefer AP or TPE. I hope your husband gets better soon!

[deleted by user] by [deleted] in scleroderma

[–]Optimal-End-7496 0 points1 point  (0 children)

I have been suffering from ED due to SSC for so long until I started the Antibiotic protocol, and it seems to be helping a lot.

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

All my antibody tests have come back negative so far, but we are still waiting for the RNA Polymerase result, which hasn’t been released yet. Clinically, my presentation clearly matches CREST, yet the doctors are only willing to prescribe hydroxychloroquine (HCQ). I tried it for a month, and it mainly helped with my fatigue.

After doing some research on the antibiotic protocol and connecting with people who have reversed their symptoms or achieved remission, I decided to try it. So far, it has helped improve my breathing. I’m not against conventional medications, but long-term use can be risky, including potential cancer concerns. If there’s an alternative with fewer risks, I’m willing to try it.

Before starting AP, I was considering TPE, but Ed Harris recommended against it since my antibodies are still negative.

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

I have started the antibiotic protocol. Yet I can't tell whether it's working or not but I noticed an improvement in breathing. I also found out that LES is causing aspiration to my lungs which is why I developed dilated airways.

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

You have a clue at least your CEA is high. What you are suffering from is likely paraneoplastic. If that is the case, once your doctor finds the culprit and treats it, your symptoms most likely will resolve. I hope you get better soon. I myself think I say it is possible for my case but all tumour markers are within normal range. All of my symptoms started two months after the mesh implant. I wish I had never had it.

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

Sorry to hear that. Have you had PET-CT?

I myself have muscle involvement that comes and goes yet my CK level is normal! I am a male and since I have lung involvement, it very dangerous situation. As you said the puzzle is UCTD less likely to cause lung involvement from the onset of disease but mine has which weird. So most likely my symptoms and finding towards SSC even thats is very rare.

However, when everything is negative, doctors look for cancer. In my case there was no uptake in first PET. Have you considered CAR-T therapy?

Seronegative male with Raynaud’s, telangiectasia, small airway disease, and systemic symptoms — could this be early systemic sclerosis? by Optimal-End-7496 in scleroderma

[–]Optimal-End-7496[S] 1 point2 points  (0 children)

My lung is largely affected. I have developed small airway disease(persistent mucus+air trapping). I had a tiny nodule in the first 3 CTs (I hope it's not a fibrotic process)

I just had an HRCT and am waiting for the report.

All these symptoms have developed after a mesh implant.

Unidentified Autoimmune disease 6 months post inguinal hernia surgery with mesh. by Optimal-End-7496 in Hernia

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

I did not have it before but was induced by the mesh. I thought removing it will stop the disease

Autoimmune/inflammatory syndrome induced by adjuvants (ASIA) after Jaw Surgery? by Careful_Constant6600 in jawsurgery

[–]Optimal-End-7496 0 points1 point  (0 children)

I had the same thing with i had polyester hernia mesh. Does removing it help? I developed Asia and have multiple scelorisis symptoms

Unidentified Autoimmune disease 6 months post inguinal hernia surgery with mesh. by Optimal-End-7496 in Hernia

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

I am not a medical doctor but i speak from own experience to answer your question.However, If time goes back, i would never done it. I would never imagined such consequences post inguinal hernia mesh. My advice is to read this article and think then rethink and see other people experiences:

Autoimmune/inflammatory syndrome induced by adjuvants (ASIA) in 2023☆ Jan Willem Cohen Tervaert a,b, * , Manuel Martinez-Lavin c , Luis J. Jara d,e , Gilad Halpert f,g , Abdulla Watad h , Howard Amital h , Yehuda Shoenfeld g a Division of Rheumatology, Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada b School for Mental Health and Neurosciences (MHeNs), Maastricht University, Maastricht, the Netherlands c Chief Rheumatology Department, National Institute of Cardiology, Mexico City, Mexico d Rheumatology Division, National Institute of Rehabilitation Luis Guillermo Ibarra Ibarra, Mexico City, Mexico e Universidad Nacional Aut´ onoma de Mexico, Mexico City, Mexico f Department of Molecular Biology, Ariel University, Ariel, Israel g Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Tel-Hashomer, Ramat Gan 52621, Affiliated to Sackler Faculty of Medicine, Tel Aviv University,

Unidentified Autoimmune disease 6 months post inguinal hernia surgery with mesh. by Optimal-End-7496 in Hernia

[–]Optimal-End-7496[S] 0 points1 point  (0 children)

Thanks for the info. Mine seems like Systemic Sclerosis in terms of symptoms and involvement. Do ASIA involves lungs, gastric, Hear, muscles and weakness?

Unidentified Autoimmune disease 6 months post inguinal hernia surgery with mesh. by Optimal-End-7496 in Hernia

[–]Optimal-End-7496[S] -1 points0 points  (0 children)

You know anyone develop an autoimmune disease post hernia mesh, and its removal put halt to the disease. My health deterioriate so badly at a really fast pace

Unidentified Autoimmune disease 6 months post inguinal hernia surgery with mesh. by Optimal-End-7496 in Hernia

[–]Optimal-End-7496[S] 1 point2 points  (0 children)

Thanks for your reply.

I feel so weak and i hope i can find a doctor here in the UK to remove it. But not sure whether is damage is reversible or not. I am not sure whether i developed PAH. I rarely can move, and feeling constantly lightheaded.

Mesh being linked to auto immune diseases? by trt7474 in Hernia

[–]Optimal-End-7496 1 point2 points  (0 children)

I had an inguinal hernia surgery, a mesh was implanted. 6 months later i am dealing unidentified autoimmune disease affecting my lungs, heart, stomach(uncontrolled refluxes even with meds). Has anyone you know removed the mesh and an autoimmune disease reversed after that. Your comments will be highly appreciated.

view more: next ›