Scleroderma- HELP WITH NEW DIAGNOSIS

[Maz]

[user=1977]RSCHAFF[/user] wrote:

I am looking for a Doc that will help over phone. I am in Denver and so far not impressed wiyj doctor here. None of them seem to spealize in AP, No mention on their website. Are you referring to Dr F, who I am thinking of going with?

Hi RS,

I wasn't sure which doc you were meaning…just wanted to be clear before sending you the doc's contact info. Dr S in Iowa is the physician who will very kindly consult over email and phone with patients and their physicians wanting to learn the therapy. I will send you his contact info in a PM (private message).

Just look top right of this page and click where it will say, “You have 1 new message,” to retrieve Dr. S's contact info. Will also send you Dr. F in CA's info in case you decide to go see him.

Peace, Maz

 

[jlane1111]

[user=514]JOJO19551[/user] wrote:

RS, We know the feeling.  I worried for about one year that it would kill me and kind of had some anxiety issues over it, which I think is normal.  My SCLA blood test showed if I would have organ involvement it would be kidneys, so for about 16 months I did a microalbumin urinalysis and they were always fine.  Six months after I started antibiotics I could tell a big difference.  It continued to get better and better.

I also did a light therapy for 26 months, which I just stopped in June.  It is called PUVA.  The light helped break down the collagen.

Thanks to Kim I learned about the infrared sauna and purchased a portable one (about $400) which helped me back to sweating which I believe gets rid of toxins. 

Read as much literature as you can about the disease to get a better understandinhg.  Also see if your community has a support group.  We have a group of 6 yo 7 and meet once every other month to share our progress, suggestions, experiences.  We became a rather close group.

Keep your chin up!!

JoAnn

Hi JoAnn

I'm interesed in the light therapy for my husband who has significant neck tightness due to systemic SD.  He's on the AP, minocin and supplements.  How did you find about PUVA and is it covered by insurance?

 

Thanks much

Jo 

 

[JOJO19551]

jlane, PUVA is usually prescribed by a Dermatologist.  My Dermatologist is at a teaching hospital but I can get the light treatment at physical therapy at our local hospital.  It is considered a physical therapy with your insurance but the cost is only $55 per treatment.  I started out at twice a week for a few months, then once per week, then once every other week.  It really works.  The down side is you have a tan constantly.  I was off of PUVA since June but am starting again due to some swelling in my legs/ankles.  This time we are going to try UVB light therapy.  Good luck and let me know if you need any other info.  joAnn

[jlane1111]

Thanks for the info JoJo. We will definitely investigate it as he needs it for his neck (hands too) but the constricted neck involvement is the greatest concern.

Jo

[MINOCINMAN]

[user=2400]jlane1111[/user] wrote:

Thanks for the info JoJo. We will definitely investigate it as he needs it for his neck (hands too) but the constricted neck involvement is the greatest concern.

Jo

When you say it really works can you please tell me what were your symptoms? I have limited range of motion in hands. Can not make a fist? Did it help this?

MM

[MINOCINMAN]

[user=1977]RSCHAFF[/user] wrote:

Has anyone had sucess with minocin for systemic Scleroderma ? What was dosage and frequency and how long took it before results? Current symptoms are only swelling of both hands with hardened skin. Did have stiffness in both knees in past and should der pain, which resolved. Now have just hands and lower arm thickness of skin and limited cvrange of motioin of fingers. Can not make a strong grip.

Pleae advise.

PLEASE PLEASE DO NOT REPLY TO THIS INQUIRY, BUT RATHER MINOCINMAN IS USER NAME I GO BY NOW. THANK YOU.

[MINOCINMAN]

[user=1977]RSCHAFF[/user] wrote:

Thank you very much for the reply. I read that AP normally only works for people that have a mycoplasm isue and not all with Scleroderma. Agree? Did uou have this mycoplasm? Are you in full remission? Were you diagnosed with limited or diffuse?

PLEASE PLEASE DO NOT REPLY TO THIS INQUIRY, BUT RATHER MINOCINMAN IS USER NAME I GO BY NOW. THANK YOU.

[Babs]

Hi Kim – How did you know you had Lyme's just by having a Western Blot test?  I am thinking I may have lyme's but had a Western Blot and it came back negative.  Please let me know your thoughts.

 

Babs

[Kim]

[user=2714]Babs[/user] wrote:

Hi Kim – How did you know you had Lyme's just by having a Western Blot test?  I am thinking I may have lyme's but had a Western Blot and it came back negative.  Please let me know your thoughts.

Babs,

I started AP for my Scleroderma (not knowing at the time I had Lyme) and had improvements, but plateaued and was still sick.  We live on a wooded property and I'd had over 20 tick bites within 5 years, so knew Lyme was a definite possibility which was confirmed by the Igenex Western Blot.

Take care…..kim

[MINOCINMAN]

[user=40]Kim[/user] wrote:

[user=2714]Babs[/user] wrote:

Hi Kim – How did you know you had Lyme's just by having a Western Blot test?  I am thinking I may have lyme's but had a Western Blot and it came back negative.  Please let me know your thoughts.

Babs,

I started AP for my Scleroderma (not knowing at the time I had Lyme) and had improvements, but plateaued and was still sick.  We live on a wooded property and I'd had over 20 tick bites within 5 years, so knew Lyme was a definite possibility which was confirmed by the Igenex Western Blot.

Take care…..kim

Do you feel the test is “Realiable and Verifiable” to rule in or out Lyme? All my labs were normal, ANA, ANTI CCP, SED, RF SCL70, ACA, and I am faced with a SD diagnosis? I am not saying the test is bad, but I am wondering if this test has been proven to be reliable? Do you have any info on % of false positive, etc?

 

Thank you Kim for all of your hard work.

 

Pls  

[Kim]

[user=2719]MINOCINMAN[/user] wrote

Do you feel the test is “Realiable and Verifiable” to rule in or out Lyme? All my labs were normal, ANA, ANTI CCP, SED, RF SCL70, ACA, and I am faced with a SD diagnosis? I am not saying the test is bad, but I am wondering if this test has been proven to be reliable? Do you have any info on % of false positive, etc?

Igenex seems to be the preferred lab by LLMDs and it's the one mine uses.  According to him, there are almost no false-positives and a lot of false-negatives which is why so many people have to rely on a clinical diagnosis.  No, it's not perfect, but better than the others.

Take care……kim

[Author]

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