Anyone know where to get IMIG online or in UK?

[Hip]

The document @mission impossible is referring to is:

Myalgic Encephalomyelitis: Guidelines for Doctors
Journal of Chronic Fatigue Syndrome, Vol. 10(1) 2002, pp. 65-80
Author: John Richardson

Page 9 reads:

IgG Infusions have been used extensively both in the U.K. and abroad and the basis for this is considered to be the abnormal, cellular and humoral immunity in these patients. Replacement therapy with IgG is given to restore normal homoral immune function. Some clinicians use the I.V. infusions but we for many years have used I.M. injections. Professor R. Loria in personal communications has demonstrated the vortex of effects which occur when IgG is given I.M. rather than I.V. and thus it has more effective results. Also, instead of large amounts at extended intervals, we find that on average about 500 mg weekly has a "smoother" and more beneficial effect. However, before this therapy is given it is wise to do the serological tests alluded to earlier and show these to be positive.

The protective benefits may be seen by referring to the outcome in pregnancy. Over the years out of 249 female patients with high positive titers to a Coxsackie virus, 66 became pregnant. Forty-five of these (68.2%) had normal babies but the remaining 21 (31.8%) had abnormal babies. It is significant that for varying reasons, none of the mothers who had the abnormal babies had been protected by IgG infusions, but more than 90% of the remainder received IgG before and during pregnancy. (The records are retained.)

 

[susank]

500 mg weekly? Wow.

I will try to correctly type the URL I found - old thread from here - worth reading:

http://phoenixrising.me/conferences...e-part-iv-the-clinical-trials-by-cort-johnson
Scroll down to bottom - last pink box - Dr. Park.

Tim - I sent you a PM - did you get it?

 

[paolo]

I don't follow your logic. IVIG is standard treatment for low IGG (and other disorders), which some ME/CFS patients have. Without testing, how do you know whether the patient has low IGG and is therefore a candidate for IVIG? Or are you suggesting that because a patient has ME/CFS, they should not get IVIG because it's not a proven treatment for ME/CFS? Testing does indeed tell us which patients would benefit from IG -- those who are candidates for IG regardless of ME status. TTT tells us which patients are likely to benefit from OI treatments. Thyroid testing tells us which patients should benefit from thyroid treatment. And so on. Isn't that the whole point of testing -- to find out where there are abnormalities that can be treated?

The position of a researcher is different from that of a patient. The first one aims to define and treat the disease in general population, the second one aims to the solution of his own disease. I think that in ME/CFS these two points of view are very different, because of the heterogeneity of the disease.

Two persons can have the clinical presentation of ME/CFS and respond to very different treatments. For exemple, one could have a persistent infection by Coxiella burnetii, and may ameliorate with antibiotics (Arashima Y et al. 2004); the other one may have a mitochondrial disease, and could have some relief with specific drugs (B1 and B2, for instance) (Galàn F et al, 2015). And we know that those two diseases are sometime included in the diagnosis of ME/CFS.

I belive that the best approach to solve this problem for the single patient is to make an extensive check up and treat what is wrong in his own case. Researchers -on the other hand- have to check for the abnormalities that are statistically predominant in the ME population, in order to define this illness, if it exists as a unique entity.

In other words, we are researchers who work on a single patient population, while scientists are working on a statistically relevant population. These are two different jobs. And are both important.

 

[SOC]

Dear SOC,
We have discussed this before. Treating low IgG is not the basis of treating ME with Ig. They are two separate considerations.

And you are missing the point again.

I have never supported all ME patients being treated with IVIG or said that IVIG is a universal treatment for ME. What I have said is that since many PWME have symptoms consistent with low Ig, all PWME should be tested for low Ig and treated with IVIG if appropriate.

For this reason it doesn't seem safe, or wise, to claim that any of the known treatments are universal treatments for ME/CFS, nor that they are not suitable treatments for some people with ME/CFS. This is why it is important to get extensive testing (difficult to get in the UK, I know) to best determine which of the available treatments are most likely to help any individual patient.

IVIG, IMIG, SCIG is a valuable treatment for ME/CFS patients with certain immune disorders, infections, and (I believe) some autoimmune conditions. It may be completely unsuitable for others.

I was disagreeing with your statement that testing is not going to tell anything about whether IVIG will be of use.

'Extensive testing' of individuals is not going to tell us anything about whether Ig is any use.

Of course testing individuals is going to be of use in determining if IVIG will be of use to the individual. That's the whole point of medical testing.

I stand by my position -- PWME should be extensively tested for the many treatable conditions that could be a part of their ME. And they should be treated for those conditions, even if the treatment is not an appropriate treatment for all PWME.

 

[mission impossible]

I agree with that last paragraph

 

[Daffodil]

I was looking into buying subcutaenous immunoglobulin at KabaFusion. I had never heard about this place until I just read this thread.

The subQ immunoglobulin I bought from Lyme specialty pharmacy, Infuserve, was about $90 - 95/gram. If I could get it a lot cheaper from KabaFusion, maybe I wouldn't have to go to Europe.

Does anyone know how this company works? Do they mail drugs?

Thanks!
xox

 

[aquariusgirl]

If a person couldn't tolerate gcmaf ....could they tolerate IVIG? Is it likely?

 

[aquariusgirl]

I do know autistic kids who got the IVIG here in the US......wonder what their titers were?

 

[barbc56]

PWME should be extensively tested for the many treatable conditions that could be a part of their ME. And they should be treated for those conditions, even if the treatment is not an appropriate treatment for all PWME

I absolutely agree with this. However it seems that some are buying this online, without a prescription and self treating.

IMHO, that is a situation fraugh with many dangers.

Barb

Looks like I am repeating myself. Forgot that I had posted but that was in July.

As for many things for pwme, it sounds like taking me/cfs out of the equation and going by results of a blood test or whatever ctiteria is appropriate for a condition.

 

[Daffodil]

wish i had heard of KabaFusion before..could have saved $1000

they will sell Gamunex for $77/gram....phenomenal price for USA