Lewis-Sumner - MADSAM

[eth...@gmail.com]

I am a leukemia and bone marrow transplant survivor. This April is my
5 year post transplant anniversary. During the third year of recovery
the bottom of my left foot started to go numb. Months later the entire
bottom of my left foot was numb and the weakness started to become
prominent. I was later diagnosed by Dr. Richard Lewis at the Detroit
Medical Center with Lewis-Sumner syndrome. I have tried IVIG therapy
twice without much relief. Both times I had adverse reactions a few
days after therapy that required a short course of steroids to
control. About a year ago the numbess moved into my right foot.
Pronounced weakness followed and I now walk with a limp. My stamina
and endurance on my feet is considerably and any over exertion results
in considerable pain. Recently the issue in my right leg has traveled
up into my thigh with numb skin and, what feels like, tightness in the
muscle. Often times this new pain will wake me at night.

I feel that this is affecting my quality of life. Exercise is
difficult and everyday the pain becomes more annoying and hard to
control. If IVIG does not appear to have any effect then what are my
options? I have only been told by Dr. Lewis that high dose steroids
and plasma aphresis are the only other options. I feel that both of
these options have too much risk and too many side effects. The
physical therapy I tried did not provide any improvement. And, my bone
marrow doctors do not know if this is transplant related.

I am looking for any advice outside of what I have written here in
order for me to develop a game plan to, at least, stop the progression
of this chronic issue.

Thank you,
Ed Thorp
Plymouth, Michigan
United States

[Imran Khan]

Please visit the cidpusa.org site and should follow the guidelines in the e-book or bettr look in the services section of the website.
Many treatments can reverse cidp but IVIg is not among them

Thanks

Ron

--
I.K

[Ed Thorp]

Your e-mail is confusing for me. First, I do not have CIPD, I have Lewis-Sumner syndrome. Second, why do you say that IVIG is not a treatment for CIPD when you clearly mention that in the treatment area of your web site. Here is your quote:

Intravenous immune globulin (IVIG) has also been found to be beneficial. in CIDP treatment. IVIG is usually given in divided doses over 4 or 5 consecutive days at a  total dose of 2g/kg. Dr. Dalakas has shown that if the total infusion can be given in two large doses it works better for the patient. He also recommends that for all the neurological disorders the dose of IVIg should be 2gm/kg.

            Maintenance doses are often needed at monthly intervals to maintain clinical response. Serious side effects of IVIG treatment incude, (fatal anaphylaxis in IgA-deficient patients seen in {In patients who have anti IgA  antibodies}.  We recommend that before the infusion the total IgA level be measured. If the level is below 58 then anti IgA ANTIBODIES NEED TO BE MEASURED. However a case has been reported with IgA LEVEL of 58 who later developed IgA reaction. So a careful history should be taken of all patients first starting IVIg. If the lab reports IgA <20 IT MAY BE SAFE TO ASSUME THAT IT IS ZERO. Not Always. Check the patients history! ( Who is your IVIg PROVIDER)? Learn to give IVIg safely, learn the secret!

So, I'm sure to be missing something here. If you care to explain that would be great. Other then that, I'm back to my bone marrow docs and Dr. Richard Lewis at the DMC.

-ET

[Imran Khan]

Lewis Sumner is just a variant of CIDP. Your main diagnosis is CIDP.

 

I meant treatment is the sence of a cure. IVIg is a treatment and not a cure.

 

Thanks

 

Ik

[Craig Barrett]

He's not saying that IVIG is a CURE.. he's saying that IVIG is a TREATMENT.

 

Sorry, I couldn't resist

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[Sharon K. Davis]

My 16 year old daughter has been on IVIG for 15 years for her CIDP. What is a cure for it as oppose to treatment?

 

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[Vicki Bane]

Ed Ivig works for me but my doctor tried CellCept recently hoping to replace the Ivig.  It didn't work for me but it has worked for others.   God bless you and thank God you survived the lukemia.  I had a very dear friend who lost her battle in July after only a 4 month fight and tonight we are having a lukemia walk in her honor.  --- On Tue, 10/14/08, eth...@gmail.com <eth...@gmail.com> wrote:

[Imran Khan]

Dear Sharon,
The research done by cidpusa.org went to show that bacteria present in the body trigger some of the GBS and CIDP. THIS HAS BEEN WELL DESCRIBED. If we get rid of the bacteria then a complete remission of the disease follows.

This same cure has been tried on other diseases too, including example ITP and the results are that the disease remits.
These studies have been reported, somehow the main press ignores this.

The protocols are avaliable in the cidpusa e-book. The flame within.

Ron

On Wed, Oct 15, 2008 at 11:57 PM, Sharon K. Davis <davi...@bellsouth.net> wrote:

My 16 year old daughter has been on IVIG for 15 years for her CIDP. What is a cure for it as oppose to treatment?

 

--
I.K

[Ed Thorp]

Vicki,

Thanks for your kind words. Very sorry to hear about your friend. I have known 10 with various forms of leukema. Only two of us remain... I continue to be among the lucky few that has amde it past 5 years. Thank you for the advice on CellCept. I will indeed bring this up to the docs.

-Ed Thorp

[Sharon K. Davis]

What is the process for getting rid of the bacteria? Is this standard protocol.  My daugther is being followed by a well-reknowned neurologist who has not mentioned. this.

-------------- Original message from "Imran Khan" <imran....@gmail.com>: --------------

 

--
I.K

[Vicki Bane]

Let me know if it works --- On Fri, 10/17/08, Ed Thorp <eth...@gmail.com> wrote:

From: Ed Thorp <eth...@gmail.com> Subject: {cidpusa} Re: Lewis-Sumner - MADSAM

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[Imran Khan]

Disinformation is the worst information. God does not like lies.

There are two published cases of cidp cure both available on cidpusa web site one after a tonsillectomy and the second after stem cell surgery.  The nanotech clinic has not published but we have many cases that have resolved completely with the antibiotic protocol.

Those groups which misled people and are fueled by the money of pharmaceuticals try to promote the worthless drugs.

The protocols are published in the Flame within E-Book.
It is our business to treat CIDP.

Ron
www.cidpusa.org

--
I.K

[Sharon K. Davis]

THank you so much.  She gets, I believe 30cc once a week, subcutaneously.

-------------- Original message from kelly <kpoo...@yahoo.com>: --------------

Hi Sharon. My daughter is 7 & has CIDP. She was diagnosed at 4. There is no known cure for CIDP. There is only treatment. With treatment sometimes remission is reached, especially in children. I read a study that said 70% of children can reach remission. There is a wonderful support group at www.gbs-cidp.org. Click on the forums section & you can register to speak with us there. There are a few moms who post & it has definetly helped to speak with them. You can also register with the GBS/CIDP Foundation to get their newsletter & to get information for their symposiums. The symposiums are held every 2 years, I believe. There is one coming up in November in Chicago & the leading dr's who treat CIDP will be there. How much IVIG does your daughter get & how often? Kelly --- On Wed, 10/15/08, Sharon K. Davis <davi...@bellsouth.net> wrote:

From: Sharon K. Davis <davi...@bellsouth.net> Subject: {cidpusa} CIDP cure To: cid...@googlegroups.com Date: Wednesday, October 15, 2008, 2:12 PM My 16 year old daughter has been on IVIG for 15 years for her CIDP. What is a cure for it as oppose to treatment?

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