evidence for need for IVIG

[Guest guest]

Hello,

I gave this answer to a question I received back channel Re: proof for

need for IVIG.

NK cell function was the major evidence along with other

immune testing that was done showing dysregulated immune system.

There are several studies, e.g.,

http://www.co-cure.org/immuno.pdf

http://www.journals.uchicago.edu/doi/full/10.1086/374666?cookieSet=1

Other than that,

Lloyd A, Hickie I, Wakefield D, Boughton C, Dwyer J. A double-blind,

placebo-controlled trial of intravenous immunoglobulin therapy in patients

with chronic fatigue syndrome. Am J Med 1990; 89:5618.

PK, Shepard J, Macres M, et al. A controlled trial of intravenous

immunoglobulin G in chronic fatigue syndrome. Am J Med 1990; 89:55460.

Am J Med. 1998 Sep 28;105(3A):43S-49S.

Immunologic parameters in chronic fatigue syndrome, major depression, and

multiple sclerosis.Natelson BH, LaManca JJ, Denny TN, Vladutiu A, Oleske J,

Hill N, Bergen MT, Korn L, Hay J.

Department of Neurosciences, Chronic Fatigue Syndrome ative Research

Center, University of Medicine and Dentistry of New Jersey--New Jersey

Medical School, Newark 07018, USA.

Other Evidence for immune dysregulation in M. E. / postviral CFS:

http://www.name-us.org/ResearchPages/ResImmune.htm

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

[Guest guest]

Add insult to injury, back in the late 80s when I first was " diagnosed " with

" CFS " I was treated with intramuscular Gamma Globulin. It worked wonderfully

even if the injections were the most painful thing I have ever voluntarily

endured (and more painful than most of the involuntary things as well)

Because it was so effective, every CFS patient wanted it and within 6 months

, demand had exceeded supply by a large margin so IMGG and IVGG were

withdrawn from CFS patients as they were deemed not as needy as others for

whom the treatment was useful.

R

[Guest guest]

HI

When you said this injection worked wonderfully what did it do?

My Main questions being did it relieve fatigue and post exertional

fatigue and did it relieve any temperature sensitivites??

thanks

Roy

>

> Add insult to injury, back in the late 80s when I first

was " diagnosed " with

> " CFS " I was treated with intramuscular Gamma Globulin. It worked

wonderfully

> even if the injections were the most painful thing I have ever

voluntarily

> endured (and more painful than most of the involuntary things as

well)

> Because it was so effective, every CFS patient wanted it and within

6 months

> , demand had exceeded supply by a large margin so IMGG and IVGG

were

> withdrawn from CFS patients as they were deemed not as needy as

others for

> whom the treatment was useful.

> R

>

[Guest guest]

It allowed me to live a normal life, no pain, no poor sleep, no brain fog,

no fatigue,no temperature regulation problems but I was only able to use it

for about 4 months before it was withdrawn.Then it was back to the pits.

R

[Guest guest]

thanks

It looks to me like this product should be used today and people who

treat me patients should look at it closer.

Cheers

Roy

>

> It allowed me to live a normal life, no pain, no poor sleep, no

brain fog,

> no fatigue,no temperature regulation problems but I was only able

to use it

> for about 4 months before it was withdrawn.Then it was back to the

pits.

> R

>

[Guest guest]

I have been in the middle of 7 different doctors arguing over whether to

give me IVIG for 2 years. I still havent gotten it. I cant get a

really clear answer why not from those that say it wouldnt be good to

get. When my illness began the first theing they found was that I have

very low IGG and IGA. Now I have shingles on top of everything - I feel

like I am just slowly going under

[Guest guest]

Hi,

Can you get someone to prescribe acyclovir (an old anti-viral) while

they haggle it out?

I am on acyclovir and lysine and it keeps my viruses under control

(actually, I would be too sick to be on this board if I didn't take

it). I have been on it long term, about 3 years. No liver issues.

Marti

P.S., While I know there will be so many emails regarding natural

anti-virals, they are just not enough. I prefer natural but

sometimes, you've got to do, what you've got to do. I supplement with

natural supplements and then attempt to lower my acylovir dose, it

just isn't enough to keep them suppressed.

I know that I am not putting it in remission but I am functional

enough to push doctors and do my own research and finish raising my

teenage son. Perhaps Valtrex(which works slightly differently than

acyclovir) or higher dose (which I am not really willing to do). I

will not take Valcyte for various reasons.

Marti

>

> I have been in the middle of 7 different doctors arguing over whether to

> give me IVIG for 2 years. I still havent gotten it. I cant get a

> really clear answer why not from those that say it wouldnt be good to

> get. When my illness began the first theing they found was that I have

> very low IGG and IGA. Now I have shingles on top of everything - I feel

> like I am just slowly going under

>

[Guest guest]

That is what I am doing for now as well - Valtrex - high dose, and

Lysine. What dose do you take? I take 750 mg Valtret x 2/day and

1000 lysine.

But I am always feeling like Im going to go into an attack - my

system just isnt fighting it

[Guest guest]

I am on 1200mg of acyclovir per day and also at 1000mg lysine per day.

I take other forms of natural antivirals, elderberry, garlic, etc.

The most effective of the naturals was raw apple cider vinegar (the

vinegar breaking down the virus cell wall).

I am not taking Valtrex although I have had a couple of intenses

doses. My insurance didn't cover it but they covered acyclovir.

I have a filled prescription of Valtrex in case I feel I am starting

to get a major shingles attack.

Valtrex is valcyclovir, I believe. It is supposed to have a increased

efficiency for stopping replication. I believe dosing might be a

consideration as well, timing dose to just before virus replicates.

Most herpes virues replicate on 8 hr timeframe. This might also be

something to consider - switching to a 4 time dosing rather than two.

Marti

>

> That is what I am doing for now as well - Valtrex - high dose, and

> Lysine. What dose do you take? I take 750 mg Valtret x 2/day and

> 1000 lysine.

>

> But I am always feeling like Im going to go into an attack - my

> system just isnt fighting it

>