Immunodeficiency clinic of Mt Sinai

[undcvr]

Btw I am in NYC and have been recommended by several immunologists to go to the Immunodeficiency clinic of Mt Sinai. From an immunologist's point of view, we are immuno deficient and more susceptible to infections. They hold the director there, Dr Charlotte Rundle in very high regard. But I will prob not see her but one of the 3 or 4 doctors under her.

Any comments ? Anybody been here before ?

 

[Nielk]

I live in NYC too.
Never heard of this department in Mt. Sinai.
If your insurance covers it, it probably can't hurt to go to them to see if they have any suggestions for you.

Keep me posted if you try it.

Nielk

 

[Sushi]

Btw I am in NYC and have been recommended by several immunologists to go to the Immunodeficiency clinic of Mt Sinai. From an immunologist's point of view, we are immuno deficient and more susceptible to infections. They hold the director there, Dr Charlotte Rundle in very high regard. But I will prob not see her but one of the 3 or 4 doctors under her.

Any comments ? Anybody been here before ?

Hi undcvr,

Dr. Charlotte Rundles was my room mate in university. I have been in touch with her and sent her the recent research on XMRV. So far she has said that she wants to see more research confirming these studies before she would want to start treating.

She is a great person and I hope that sometime soon she will want to take this on. She has been an advocate for HIV patients.

Sushi

 

[undcvr]

Wow Sushi ... jackpot ! So does that mean it is pointless for me to go see her ? I dont suppose that even at her clinic that they wud test for XMRV ? Have u heard anything from other cfs-er that have been treated by her/them ? Anything special ?

Nielk - I am in Queens too. This city is already so hard to live in, even harder with someone with cfs.

 

[Sushi]

Wow Sushi ... jackpot ! So does that mean it is pointless for me to go see her ? I dont suppose that even at her clinic that they wud test for XMRV ? Have u heard anything from other cfs-er that have been treated by her/them ? Anything special ?

I'd guess it is too early to go to the Mt. Sinai clinic. Charlotte is most likely in touch with Nancy Klimas as both are high profile immunologists, and though Nancy is not yet treating XMRV directly either, of course she feels it is very significant.

I very much doubt that Mt. Sinai is testing for XMRV themselves--unless experimentally (though I haven't seen them mentioned as ones who are even doing that). Unless you are part of a study, right now the only way to be tested is through VIPdx or Redlabs--unless you are a patient of KDM and he does a stomach biopsy on you!

Best,
Sushi

 

[undcvr]

I thot that they wud come at cfs from an immunodeficiency point of view, ie, a faulty immune system. That they wud have special therapies to actually treat the immune system directly instead of focussing on infections.

 

[Sushi]

I thot that they wud come at cfs from an immunodeficiency point of view, ie, a faulty immune system. That they wud have special therapies to actually treat the immune system directly instead of focussing on infections.

Basically, I don't think they are there yet. From what I heard from Charlotte--a few months ago--they don't really treat ME/CFS. I think many immunologists would not be ready to treat ME/CFS because the immune dysfunction is not widely known. She said that IVG had not been very helpful in treating ME/CFS in the past.

Best,
Sushi

 

[undcvr]

Wow this is so frustrating.

 

[Gemini]

Immunodeficiency clinic of Mt Sinai...Dr Charlotte Rundle...

Dr. Charlotte Cunningham-Rundles is a specialist/researcher in Immunodeficiency Diseases, i.e., one or more components of the immune system are defective. She's well-known for her research and treatment of "Primary" Immunodeficiency Diseases (PIDDs) thought to be of genetic origin; examples are Common Variable Immunodeficiency CVID, Selective IgA Deficiency, and Severe Combined Immunodeficiency SCID. On the IDF Forums, many CVID patients report also having ME/CFS.

"Secondary" Immunodeficiencies can be caused by viruses (like HIV), chemotherapy, medications, or in some parts of the world, malnutrition.

It can take years for a PIDD patient to be diagnosed; physicians do not usually test for them.

Dr. Cunningham-Rundles is aware of Dr. Klimas' NK cell research in ME/CFS.

 

[undcvr]

Do you think that CFS-ers actually have some kind of rare PIDD ? I have always wondered that.

 

[Gemini]

Do you think that CFS-ers actually have some kind of rare PIDD ? I have always wondered that.

I personally feel all ME/CFS patients should be screened for PIDDs early on because many are treatable. Unfortunately most ME/CFS patients aren't tested for PIDDs.

It usually requires a clinical immunologist, like Dr. Cunningham-Rundles or Dr. Klimas (not an allergist), to test for PIDD immune system abnormalities and treat them. I know of CVID patients with ME/CFS being treated for CVID and feel it improves their functioning but doesn't cure their ME/CFS. One went back to work and another started medical school.

It's possible there's an ME/CFS subgroup like this with an underlying "undiagnosed" PIDD.

 

[undcvr]

This is something I have to try then but it seems like the only treatment they have for CVID is IVIG. I have already have my ImG lvls tested and they are about 200, the reference range is 400-1100. Even with my lvls being lower than normal there is no way my insurance will pay for IVIG treatments. If this is the only treatment that they have then I am out of luck and I have run into another dead end.

 

[Gemini]

there is no way my insurance will pay for IVIG treatments.

Fifteen years ago when my friend started IVIG treatments, you're right, insurance was a big hastle. Today he has no problems. They're paying for home infusions which for him are more convenient than going to a docor's office/clinic for them.

Sounds like you've already had some immune testing with abnormal results. Would you consider going to the Mt. Sinai Immunology Clinic for a thorough workup?

The Immune Deficiency Foundation (IDF) provides services to help patients deal with IVIG insurance issues. Something to think about.

www.primaryimmune.org (800) 296-4433

 

[undcvr]

i looked into the Mt Sinai Clinic they do not take my insurance. Is that my only option ? Does an immunologist have to be from there for my insurance to agree to IVIG therapy ?

 

[*GG*]

i looked into the Mt Sinai Clinic they do not take my insurance. Is that my only option ? Does an immunologist have to be from there for my insurance to agree ?

Hope you figure this out, I would encourage you to go, to help get Drs interested in our condition(s)!

GG

 

[IntuneJune]

undcvr - PIDD

As stated before, usually physicians do not test for primary immune deficiencies, just not standard testing. However, you have had testing, with low IgM levels. Was further testing done? Subclasses? I would think it would be significant your IgM is low.

I have CVID, a type of primary immune deficiency diagnosed after being ill so much, especially with respiratory tract infections. Having received IVIG for three years, I can report my fibro and chronic fatigue has not improved.

Now after the initial six months, I did have improved well being, so, did something else occur? This is ALL so complicated.

Was there a reason treatment with IVIG was not entertained in your case?

June

 

[undcvr]

I was tested for IgG/A/M and Complement C3 n C4. They all fall on the lower side of the reference range prompting my doc to advise me against even putting a script in for IVIG as my insurance will turn it down. But according to Gemini this has changed somewhat recently altho i wud like to know what the values were for her fren to be able to qualify for IVIG.
For insurance to cover it, it has to fall below or outside of reference testing ranges. This is what I understand.

 

[heapsreal]

my IgG, IgA, IgM have always been elevated, not an immune defiencey there, maybe some type of resistance or just evidence that I have ongoing infections. but undcvr if yours are low u may be eligable for immunoglobulin injections.

cheers!!!

 

[undcvr]

I'll look into it again, they are low but not chronically low enuf, that was the first impression i got. Heaps what do u think about those IG vials u saw online ? The ones on pharma 1010 ? How do we know that they are safe ? CAN we know if they are safe ?

 

[IntuneJune]

Pidd

There are many different types of PIDD. My lab values, CVID, would be different from another type of deficiency, but yet the treatment may be the same.

Insurance companies deny treatment if they can because it is so expensive. I was on IVIGs for sometime, when my insurance was changed to another company. That insurance company realized that I did not have a vaccine challenge test before starting on the treatments; therefore, they denied payment. Now, this changed nothing, my not having the challenge done, changed nothing, I still had CVID, still got sick without treatments. They could have cared less, they found a loop hole.

Luckily for me, my employer changed back to the orginal insurance company and I was allowed to receive infusions again.

I would bring this up to your doctors again. Do you frequently get respiratory tract infections? Sinus infections?

When I was off treatment, I really became a hermit, went no where.

Good luck. June