Anyone know where to get IMIG online or in UK?

[mission impossible]

Hi everyone, (this is my first post)

I am tyying to find out where I can get the intramuscular immunoglobulin shots organised. I would like to do 1 or even half a gram weekly. I live ih the UK, can't seem to figure out where to get here.

Ideally I would buy online and sort it all out myself if I find a reasonably priced legitamate source, preferably in Europe so I dont have to pay import duties on top. Any ideas?

I know it is possible because I know someoone who was on Rituximab via IOM and they recovered, then relapsed, then tried IMIG at 5ml shots per week and the recovery came back fully. They are in Norway so they somehow organised it from there, but that's all I know. They haven't given me any details of where to get the IMIG unfortunately, just that they originally found out about it after reading about Dr Nigel Speight using it(now retired) in the UK. But if they managed it from there then it should be possible from here in the UK somehow.

I am severe and afew weeks ago I went out one nice sunny eveing and lay down outside in the grass for a while, got bitten from afew ticks, came out in a rash but didn't notice tick and rash until afew days later. Been told I've got lyme and I'm not doing too great and on lots antibiotics and plaquenil, but I was not in great shape before hand so....if there is a good time to try the Immunoglobulins I am thingking now might be a good time. Plus recently did some tests showing reactivation of EBV and HSV1 and not on antivirals, but thinking, that the IG may help all of these. The other thing I am going to try, just ordered some, is Artesunate, as that "ticks" all the boxes too.

Any ideas anyone? I think I remember UKXMRV mentioning there are afew private immunologists in the UK, but unless they are close by like in Bristol, I think doing weekly shots myself at home is only way it is going to work.

hope you can help,

Thanks, Tim

 

[Daffodil]

You can maybe arrange it through CFS specialist Dr. DeMeirleir in Belgium or Norway but you would have to be his patient......there is some clinic in England, too.....I think the board member Justy might be able to give you some info..?

It is very interesting that you know someone who relapsed after Rituxan but got her recovery back after immunoglobulin. I have never heard that before. How many grams is 5 ml shots?

Wonder if going on Rituxan and following up with immunoglobulin could result in long term recovery?

 

[Jonathan Edwards]

To be honest I think you would be wasting time and money. One gram of Ig is tiny in comparison to the 50 grams you already have in your bloodstream. Nobody knows how Ig works in autoimmunity but it is used in much bigger amounts. If you have Lyme infection pooled Ig is not going to help since most people (donors) do not have Lyme antibodies. AN if your tests suggest herpes virus reactivation that presumably means you have high antibody levels of your own to these viruses so there seems little point in adding some Ig from people with usual levels.

Ig is expensive because there is a shortage for people who have none of their own. There is a shortage of blood product donors generally. At the moment the evidence that it is of any use in ME is inconsistent.

 

[charles shepherd]

Jonathan has covered the various reasons why you are very unlikely to find a doctor here in the UK who would be willing to prescribe im immunoglobulin for ME/CFS

We are asked this question on a fairly regular basis and I am not aware of any UK doctor - NHS or private - who is now prescribing immunoglobulin for people with ME/CFS

And I really would not recommend trying to buy a product like this off the internet and then trying to sort out the administration yourself…….

And has your Lyme disease been diagnosed using a reputable laboratory test?

 

[charles shepherd]

Jonathan has covered the various reasons why you are very unlikely to find a doctor here in the UK who would be willing to prescribe im immunoglobulin for ME/CFS

We are asked this question on a fairly regular basis and I am not aware of any UK doctor - NHS or private - who is now prescribing immunoglobulin for people with ME/CFS

And I really would not recommend trying to buy a product like this off the internet and then trying to sort out the administration yourself…….

And has your Lyme disease been diagnosed using a reputable laboratory test?

Lyme disease testing in the UK:

https://www.gov.uk/lyme-borreliosis-service

 

[barbc56]

And I really would not recommend trying to buy a product like this off the internet and then trying to sort out the administration yourself……

I think this is a quite worrisome issue.

Barb

 

[charles shepherd]

Results from a small number of small and inconsistent clinical trials into the use of immmunoglobulin treatment in ME/CFS, including the possible use in parvovirus triggered ME/CFS, are summarised and referenced in the Immunulogical Treatment section of the MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

 

[Marky90]

I know some people with ME who have become significantly better after intravenous gammaglobulins.

 

[SOC]

Results from a small number of small and inconsistent clinical trials into the use of immmunoglobulin treatment in ME/CFS, including the possible use in parvovirus triggered ME/CFS, are summarised and referenced in the Immunulogical Treatment section of the MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

I know some people with ME who have become significantly better after intravenous gammaglobulins.

At this point in time, we have no certainty that ME/CFS is a single condition for which any individual treatment will be effective. This is particularly true if Oxford and Fukuda criteria are used, but given the poor understanding of ME/CFS, even GPs who think they are using CCC or ICC could be misdiagnosing. Even then, the most tightly diagnosed collection of ME/CFS patients could have a variety of conditions (requiring different treatment) with same endpoint symptom set.

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. Small study research (and anecdotal reports) of effectiveness are going to vary depending on the subset. This is true of practically everything currently available for us, whether it's antivirals, abx, OI treatments, or whatever.

So we can't say something such as IG does or doesn't work "for ME/CFS" at this point in time. Some things work for many patients, some for a few. The best we can do is go to an ME/CFS specialist who does a lot of testing -- pathogen, immune, OI, etc -- and get treatment for problems we can identify. In a few cases there are relatively safe treatments, such as LDN, that can be tried without harm or great expense by any ME/CFS patient just to see if it will help. IG is not one of those. That doesn't mean it doesn't help some, or many, of us.

@mission impossible, I would definitely advise against doing IG without medical supervision or lab testing that indicates that it would benefit your particular "flavor" of ME/CFS. Unfortunately, you are not likely to get either in the UK. You might want to consider seeing Dr DeMeirlier, as @Daffodil suggested. He does extensive testing and will prescribe, when needed, effective treatments that are not available in the UK for ME/CFS.

 

[Marky90]

In a few cases there are relatively safe treatments, such as LDN, that can be tried without harm or great expense by any ME/CFS patient just to see if it will help. IG is not one of those. That doesn't mean it doesn't help some, or many, of us.

Good post SOC, but Ive been reading through the literature on the side effects of IVIG, and serious complications are really rare. It is considered relatively safe. But you were maybe thinking abot the expense?

 

[SOC]

Good post SOC, but Ive been reading through the literature on the side effects of IVIG, and serious complications are really rare. It is considered relatively safe. But you were maybe thinking abot the expense?

For the most part, yes. There's also the issue of limited supply that shouldn't be wasted on people who it clearly won't benefit. I'm all for giving it to people it's likely to benefit, though. I don't need a 100% guarantee.

I really don't know the consequence of giving IVIG to people with healthy, properly functioning immune systems, or whether some immune dysfunctions could be made worse with introduced IG. I'm not concerned about the safety of IVIG in the general way of things. As treatments go, it appears to be one of the safest available to us.

 

[Jonathan Edwards]

@mission impossible, I would definitely advise against doing IG without medical supervision or lab testing that indicates that it would benefit your particular "flavor" of ME/CFS. Unfortunately, you are not likely to get either in the UK. You might want to consider seeing Dr DeMeirlier, as @Daffodil suggested. He does extensive testing and will prescribe, when needed, effective treatments that are not available in the UK for ME/CFS.

Dear SOC,
I don't think this can be a valid basis for advising @mission impossible what to do. 'Extensive testing' of individuals is not going to tell us anything about whether Ig is any use. Somebody might speculate that it would be useful with certain test results but that is no good. You need to have trials that show that those tests are predictive for good outcome. Anything else is just bad science - which is the precise reason why we are having so much trouble working out how to choose patients for rituximab - designing trials that will provide the needed information on predictivity is very hard.

There are no ME physicians anywhere in the world who know which patients will benefit from Ig for ME. There cannot be because no appropriate data are available. Charles and I are simply saying nobody knows. Nobody said Ig was no good. We don't know. And nobody in Belgium or the USA knows either.

 

[ukxmrv]

The last UK ME doctor who prescribed IMIG for ME (he used to work with Dr Richardson) has now retired. Some of his patients are still getting IMIG but I don't know from where/who any longer.

Sorry

 

[sarah darwins]

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

Jonathan — When you say “Somebody might speculate that it would be useful with certain test results but that is no good”, I wonder: no good for whom? For a scientist looking to write authoritative papers? Sure. But for a long-term me/cfs sufferer it may well be quite good enough — especially if the someone doing the speculating has been working very closely with me/cfs patients for many years and has established a solid reputation among patients.

It’s not ideal, but it’s the best available to those of us who are not prepared to wait for the medical community as a whole to start taking this disease more seriously and doing the necessary work. I don’t want to die of old age waiting for gold standard tests and treatments to come along, especially when I'm talking to other sufferers who have had good, sometimes extremely good, results from a range of ‘unproven’ treatments.

If a particular doctor has found that a certain pattern of test results correlates with good outcomes from a particular drug, that’s more than enough for me, personally, to consider that treatment.

Your comments about Ig seem to be applicable to absolutely anything discussed on these pages. It’s a given. We don’t really ‘know’ anything’. And at present rate it could be a long time before that changes.

You and Charles have stated the formal scientific position, and that’s just fine. But there is another perfectly valid and rational position available — rational from the point of view of a long-term sufferer who is sufficiently affected to feel comfortable with a lower standard of proof. As some contributors here are both scientist and patient, they may have a different perspective again, one which is a blend of scientific rigour and pragmatism. Rationality isn't an absolute.

For a doctor to say “We don’t know enough to recommend anything” is, given the history of this thing, a bit like an insurance company saying “We’re not going to pay out on your burned-out house because we didn't send an investigator and therefore can’t say for sure what caused it”. It’s a wee bit annoying, even when the doctor concerned is one of the good guys.

I can’t see where SOC recommends Ig. I only see a suggestion that going to see a very experienced specialist might be something to consider. Which it is.

 

[charles shepherd]

The last UK ME doctor who prescribed IMIG for ME (he used to work with Dr Richardson) has now retired. Some of his patients are still getting IMIG but I don't know from where/who any longer.

Sorry

I suspect you are referring to Dr Irving Spurr. From an IiME conference report (2008):
Dr Irving Spurr
Dr Spurr is a GP who has extensive experience working with ME/CFS. He is the chairman of the Dr John Richardson Research group. Dr Spurr also talked about the implication of enteroviruses (EV) in ME/CFS. He stated that he has found enteroviruses in water reservoirs and these are not destroyed by chlorination. Dr Spurr stated that treatment was more successful if it started early (therefore the need for an early diagnosis). He also said that the sick cells needed to be rested. He agreed with Dr Lerner that graded exercise should only be used when the patient is feeling much better. He uses immunoglobulin treatment extensively and has not done a RCT because he does not believe it is ethical to not offer it to clients. There are apparently problems with the use of IV IG in the UK and so he uses IM. Treatment also involves stress reduction, toxin free food and drink and choline/vitamin C. Dr Spurr stated that patients with ME/CFS should be treated by a good knowledgeable physician.


Dr Judy Mikovits
Dr Mikovits is the research Director at the Whittemore Peterson Nevada CFS centre for the Neuro-Immune disorders. Her presentation was very technical and presented very quickly. This was the last presentation and I am sorry but I had problems keeping up. However, it did become clear that this research institution is well funded and working on cutting edge projects to understand and subtype ME/CFS. Below is a copy of her conference abstract.

ME/CFS is a heterogenous (she likened it to cancer) disease with unknown etiology. Previous studies have shown that viral specific immune responses and immune abnormalities play critical roles in the pathogenesis of ME/CFS. The central problem in the management of patients with ME/CFS is the lack of biomarkers for patient stratification into subgroups according to distinct immune responses, virus infections and neurological abnormalities. This situation hinders both the diagnostic process and development of specific treatments. The overall goal of our current research program is to define viral and host parameters that correlate with distinct disease phenotypes. We have taken advantage of the latest technologies, which allow for multiplex analysis from a single sample to better define a cohort with molecular signatures of immune response and correlate those signatures with virus infections using a custom pan viral DNA microarray. We used our clinically well defined cohort for serum cytokine and chemokine profiling using a bead based suspension ELISA for 25 cytokines and chemokines on a Luninex platform in 90 patients and 120 healthy controls; pan custom viral expression microarrays in 40 patients done at two different time points; profiling of innate immune defects including RNase L function and cytotoxic subset profiling as well as correlating microbial induced gastrointestinal inflammation chronic immune activation. Data will also be presented on a subgroup of patients who developed a defect in functional T cell subsets characterized by a clonal rearrangement of T-cell receptor gamma (TCRg). These patients form a distinct subgroup that is characterized by a significantly increased incidence of the developments of Non-Hodgkins Lymphoma.

 

[ukxmrv]

Yes, it was Dr Spurr

(thank you)

 

[SOC]

Dear SOC,
I don't think this can be a valid basis for advising @mission impossible what to do. 'Extensive testing' of individuals is not going to tell us anything about whether Ig is any use. Somebody might speculate that it would be useful with certain test results but that is no good. You need to have trials that show that those tests are predictive for good outcome. Anything else is just bad science - which is the precise reason why we are having so much trouble working out how to choose patients for rituximab - designing trials that will provide the needed information on predictivity is very hard.

There are no ME physicians anywhere in the world who know which patients will benefit from Ig for ME. There cannot be because no appropriate data are available. Charles and I are simply saying nobody knows. Nobody said Ig was no good. We don't know. And nobody in Belgium or the USA knows either.

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?

Doctors in Belgium and the US test patients for known conditions for which there are treatments, such as low IGG levels, OI, hypothyroid, and so on, and treat those patients accordingly. Not testing for those conditions because the treatments are not established treatments for ME/CFS doesn't make sense. There are no established treatments for ME/CFS because the research base is abysmal. That doesn't mean we shouldn't treat the associated conditions we can find, and that includes immune disorders. And if we don't test, as is the case in the UK, then we don't find the associated conditions and patients who could be treated remain untreated. That is foolish and cruel.

Bad science is basing medical decisions about testing and treatment on the fallacy that because there is no established treatment for ME, that no ME patient has treatable conditions. Bad science is refusing to test and then declaring there is no problem because you didn't find one.

 

[charles shepherd]

Here in the UK, in addition to the general guidance on the prescribing of immunomodulatory drugs in the NICE guideline on ME/CFS (which I'm sure most people will be aware that we have challenged) there is also more specific guidance to prescribing doctors issued by the DoH on immunoglobulin treatment - part of which we challenged at the time in relation to the parvovirus ME/CFS sub-group:

http://www.meassociation.org.uk/2008/12/immunoglobulin-treatment-for-mecfs-nresponse-in-the-bmj/

I'm afraid the link to the MEA response is isn't responding correctly

 

[Jonathan Edwards]

Jonathan — When you say “Somebody might speculate that it would be useful with certain test results but that is no good”, I wonder: no good for whom? For a scientist looking to write authoritative papers?

No, writing papers is irrelevant. You can write any rubbish in a paper these days, as we often see on PR. The issue is being an honest doctor. Sure, I wrote papers, but I was also a doctor and it took me a long time to learn not to con myself into thinking I knew more than I did. Treating patients without evidence is not good enough for patients - particularly if it involves wasting vast amounts of money that could go into proper research into something that might work.

— especially if the someone doing the speculating has been working very closely with me/cfs patients for many years and has established a solid reputation among patients.

I am afraid getting reputations with patients is all too easy - you just seem clever and attentive. I worked for someone like that when I started out. He had a huge private practice but in the end got kicked out of the university hospital for being a phoney.

those of us who are not prepared to wait for the medical community as a whole to start taking this disease more seriously and doing the necessary work.

Nobody ever got anywhere by waiting for the medical community to do anything. The situation for rheumatoid arthritis was much the same when I started out as it is now for ME - an incurable disease of no interest. The reason progress was made was that charities set up by people with arthritis or with family with arthritis raised enough money to fund professorships and research units. That is why it seems to me that it is counterproducive to spend vast sums of money on treatments that probably do not work rather than give it to research. It doesn't affect me since I have retired from medicine but it seems to me to be the way forward for PWME.

If a particular doctor has found that a certain pattern of test results correlates with good outcomes from a particular drug, that’s more than enough for me, personally, to consider that treatment.

But have they? Or is it wishful thinking? I f the results followed a clear pattern that would show up in a trial. Trials can actualy show up results that a doctor would find impossible to detect if they were unbiased. Relying on 'clinical judgment' is something people did fifty years ago but should now be a thing of the past.

Your comments about Ig seem to be applicable to absolutely anything discussed on these pages. It’s a given. We don’t really ‘know’ anything’. And at present rate it could be a long time before that changes.

They are more or less applicable to everything, but the only way to change that is to fund research, not pour money down the drain because doctors think they know more than they can possibly do.

You and Charles have stated the formal scientific position, and that’s just fine.

This is not a scientific position. It is an evidence position and that is quite different. It applies to things like safety of aeroplanes, the shipping forecast, and anything that has to do with taking responsibilities for other people's welfare seriously. It is basically about not guessing and getting reliable reasons for decisions that affect people's lives.

Rationality isn't an absolute.

That may be true but you are constructing a very complicated rational argument here!!

For a doctor to say “We don’t know enough to recommend anything” is, given the history of this thing, a bit like an insurance company saying “We’re not going to pay out on your burned-out house because we didn't send an investigator and therefore can’t say for sure what caused it”.

No it isn't Sarah, you are waving a red herring.

I can’t see where SOC recommends Ig. I only see a suggestion that going to see a very experienced specialist might be something to consider. Which it is.

She was suggesting seeing a specialist who knows how to se Ig in the right patients and there ain't no such specialist because nobody knows that from experience (or if they do they should have published it) and nobody knows enough about how the disease works to know it from theory - which seemed to be more what SOC was implying.

 

[Jonathan Edwards]

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