Scleroderma in Europe

[marionm]

Hi to All,

I am a new member trying to help my mum, who has been diagnosed with scleroderma. My mum is French, living in Paris, and I am not sure of what sort of support is available in terms of practitioners etc. Anybody know anything even if there is something in other countries in Europe?

Many thanks to anybody replying and blessings to all involved in the fight.

marionm

[Maz]

[user=250]marionm[/user] wrote:

I am a new member trying to help my mum, who has been diagnosed with scleroderma. My mum is French, living in Paris, and I am not sure of what sort of support is available in terms of practitioners etc. Anybody know anything even if there is something in other countries in Europe?

Hi Marion,

The Road Back Foundation currently has two RBF volunteer contacts listed in the UK who are probably the closest geographically to your Mum that you might consider emailing for more information:

UNITED KINGDOM

Scotland:
Contact Anna Tod
Email:

England
Contact Andrew Heyes
Email:

You could also ask RBF volunteer, Diane, for a listing of the closest AP doctors to your Mum in France by sending an email to:

apdoctors@roadback.org

On the ArthritisTrust.org site, there is also a physician's referral list (can't vouch for how current it is!) with a couple of doctors listed for UK, one in Surrey and one further afield in Yorkshire who follow the Wyburn Mason/Blount Protocol who may be open to minocycline therapy you could call. Surrey is about a 3 hour drive from the coast, coming through the chunnel.

http://www.arthritistrust.org/Physicians/PhysList.pdf

If your Mum is able to travel, she may also consider seeing Dr S in Ida Grove, Iowa, in the US to jumpstart AP therapy with IVs and then possibly find a doctor more locally who would be willing to carry on and monitor her treatment. Dr T in Boston also treats scleroderma patients with minocycline (but I don't think he does the IVs). Diane could give you contact info on these two docs, as well, if you put in a request.

Hope something here provides you with some leads for your Mum. Please let us know how you get on and wishing your Mum all the very best. 

Peace, Maz (aka Marion, too!)

[kramstine]

Hi Maz (and Marion too)

I

[Maz]

[user=263]kramstine[/user] wrote:

I

[kramstine]

Hi Maz,

Thank you for the correct adress. I found the other adress in the contact information under the dropdown under “About RBF”. It also misses the “s”.

But now that you gave me the right one, i have send an e-mail, and I am now waiting excitedly to hear where the closest ap doctor might be.

Unfortunately my health is so bad that I hardly can leave the house, so traveling to the states for a doctor might not be realistic – although I would have liked to.

thanks again,

Kramstine

[Maz]

Hi Kramstine…do hope you can find a doctor to help you soon. Dr S in Ida Grove, Iowa, is a very kind gent and offers phone consults to help patients who live some distance away. So, if you can find a doc near (even your own GP) you who is willing to work with the AP protocol, this doctor could always call Dr S and get the relevant info to get you started.

You can also print off the information from the “Physicians' Packet” pages on this website at the link below and give this to your doctor:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

If your doctor is resistant, you could use the approach of trying this as a “therapeutic probe”. It's a term all physicians are conversant with, as many times they are stumped and will try various things to help a patient. An open and willing doctor who is local to you is the goal, especially as travel is so difficult for you right now.

Minocycline is used long term for kids with acne, because all the tetracyclines are considered to be a relatively safe drug. If you still have trouble convincing your doc, the old “please, I'm very sick and just humor me” line may also work. 😉  Just be sure to convey that this is a long term therapy and results are not instantaneous, but can and do, in the longer term (years sometimes), halt and reverse rheumatoid disease process.

Richie and Cheryl F, as well as many others here with scleroderma or who have a loved one with it, have been witness to the miracle of minocycline for use in scleroderma and bringing it into remission. 

Wishing you all the very best in your searches and please let us know how you get on in finding a doc and getting started!

Peace, Maz

 

[Admin]

But the adress apdoctor@roadback.org seems to be invalid…Might there be another??

Typo – both addresses work now.     -Admin

[kramstine]

Hi Maz,

Thank you. I have just been two days in the hospital with a “look” down in my lungs and other examinations, and the great oportunity to speak to my main doctor. She started telling me that because of my aggravation they might want to give me cyclophosphamide (a type of chemo) again, i already had it twice. I said no, because it hasn

[Maz]

Kramstine….me, too. I do hope this doctor will help you with getting started on AP very soon, so you can start turning this disease around. Scleroderma seems to be one of the rheumatoid diseases that responds well, taking a bit longer in those who are a little more advanced in their disease. So, don't lose hope!

If you have luck with this doc helping you, would you be so kind as to let the volunteers at the apdoctors@roadback.org know? RBF is currently trying to expand the doctor list for Europeans who are seeking AP and it could well be a contact that could help many others.

Thanks and wishing you all the best. This may have been mentioned before, but if it might help your doctor in making a decision about minocycline, you can also print out the “Physician's Packet” and some of the scleroderma articles and studies from this site to give her, too (see links below).  😉 

Physican Packet link:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

Articles:

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/160.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/102.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/159.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/162.html

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/158.html

Studies:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/76.html

Peace, Maz

 

[kramstine]

Absolutely, Maz. I will let them and you know. Thank you for the info.

Krams

[Lynne G.SD]

Hi Krams;
      I am Lynne,also known on this site as Lynne G./SD  I was very lucky to have a young family doctor just out of medical school,they are often the best when you need some unknown protocol as they are still young enough to be curious and have not had time to get jaded…I think that is the proper English term.I am French (Canadian) and English is language number 4 and I still am not very good at it.
    My doctor was smart enough to listen to me and knew that the traditional meds used in SD only suppress the immune system which is very  stupid as you need your immune system to be able to fight this off.I simply told him what antibiotics I wanted ,he wrote the prescriptions and we learned together.He said we might as well try antibiotics as my rheumatologist had told me I only had a year or so to  live and that we might as well try it.
   AP helped a bit with the pain for the first couple of years and then stoppedAgain I was lucky enough to find a holistic doctor who found out that I have Celiac disease and systemic yeast(most of us with long standing SD do have other problems that stop AP from working well) Once that was under control antibiotics worked very rapidly and in 6 months I was in remission.I used minocycline,clindamycin,zithromax and Diflucan for the yeast.
     I am totally normal now and running a very demanding business .I have a whopping big greenhouse with 15-16000 orchids that is so much work that you would not believe.Today I use only mino 100mg 3 times a week and often less as I often forget to take it.Now and then I use 50mg Zith,usually once every couple of weeks but I still have to use the Diflucan because the antibiotics even at a low dose still cause the yeast problem.Tell your doctor that AP certainly works for most people and anything is worth a try because this disease is usually fatal.    Lynne

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