But as SOC pointed out, we aren't sure what 'ME' is yet, so if low IgG is present in a proportion of patients it seems reasonable to treat this, and leave the discussion about what is and what isn't ME for when we actually understand the etiology of the disease/s.
You're conflating two things and misrepresenting both. "Limited evidence" might be fair, but that might, as I said before, be good enough for some patients. "Not good enough" is your opinion. And as for the "vast sums of money" ... I'm not seeing any evidence that this is the case. A small number of patients paying really pretty modest amounts. Most patients are not doing it. I have contributed to charities and will continue to when I can.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.
"Nut picking" variant of the straw man fallacy. Won't do.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.
We can't do both?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.
Really? Blimey. I hope they're not following that line in emergency rooms. Your line on this feels dogmatic.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.
Again, can't we do both?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.
When I was falling asleep last night I remembered this thread and remembered writing that and thought "Wrong". I withdraw the characterisation.This is not a scientific position. It is an evidence position and that is quite different.
Er, yeah.That may be true but you are constructing a very complicated rational argument here!!
Is "red herring" a term for an analogy you don't like? Granted it was a flamboyant analogy but I don't think it's unjustified. I stand by it. You've disagreed. We should probably move on and stop discussing fish.No it isn't Sarah, you are waving a red herring.
That last part seems a bit unfair and a subjective interpretation of SOC's comments, but let's wait to see if SOC replies.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.
One point — it's my understanding that at least some of the me/cfs specialists have had trouble getting anything even considered for publication.
Do you believe in toxins yourself? Ben Goldacre doesn't believe in toxins. What kind of food contains these toxins?Treatment also involves stress reduction, toxin free food and drink and choline/vitamin C.
Thanks for your reply daffodil. I think 5ml shots work out at half a gram. As to whether following up rituximab with immunoglobulin or it is the immunoglobulin itself that produces a who knows but there is a link via Cort's treatment resource page that suggest that long term use of by rituximab can produce hypogammaglobulinaemia and should be followed up with immunoglobulins? http://forums.phoenixrising.me/inde...ximab-treatment—incidence-and-outcomes.30862/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?
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.
IVIG [is] priced at $ 48 to $ 60 a gram (cost price of IVIg). A single infusion of IVIg may cost about $3000 for a child to $10,000 for adults. For a child the cost is lower as a small IVIg dose is used. If you have insurance you will see the cost of infusion may go to 100,000. KabaFusion sells IVIG from $65 a gram to $72 a gram.(USA prices 5/5/2015).
The cost of IVIg in India & Pakistan $46 a gram, lower prices are found in China where the manufacturer will see IVIg for $10- a gram. This price has doubled in the last year. A pharmacy in Bangladesh Dhaka sells the cheapest IVIg 5 dollars a bottle of Baygam made in Germany. At cidpusa.org we ordered and tested this IVIg was 100% authentic. (infusions were done in Dhaka testing in Lahore). FDA does not allow foreign IVIg into USA.
This is what we have listed as available to UK pharmacies at the moment - most fertility docs here used to use octagam until recently but its not available anymore. I don't know which one of the others is the most suitable but here is the full list:
Gammagard S/D® (Baxter)
Intravenous infusion, (providing protein 5% or 10%), net price 0.5 g (with diluent) = £20.05, 2.5 g (with diluent) = £100.25, 5 g (with diluent) = £200.50, 10 g (with diluent) = £401.00
Kiovig® (Baxter)
Intravenous infusion, human normal immunoglobulin (protein 10%), net price 1 g (10 mL) = £49.00, 2.5 g (25 mL) = £122.50, 5 g (50 mL) = £245.00, 10 g (100 mL) = £490.00, 20 g (200 mL) = £980.00,
Note Use Glucose 5% intravenous infusion, if dilution prior to administration is required
Gammaplex® (BPL)
Intravenous infusion, human normal immunoglobulin (protein 5%), net price 2.5 g (50 mL) = £85.00, 5 g (100 mL) = £170.00, 10 g (200 mL) = £340.00
Note Contains sorbitol 50 mg/mL; contra-indicated in patients with hereditary fructose intolerance
Vigam® (BPL)
Intravenous infusion, human normal immunoglobulin (protein 5%), net price 2.5 g (50 mL) = £95.00, 5 g (100 mL) = £190.00, 10 g (200 mL) = £380.00
Note Contains sucrose (see Renal impairment, above)
Intratect® (Biotest UK)
Intravenous infusion, human normal immunoglobulin (protein 5%), net price 1 g (20 mL) = £45.00, 2.5 g (50 mL) = £112.50, 5 g (100 mL) = £225.00, 10 g (200 mL) = £450.00,
Privigen® (CSL Behring)
Intravenous infusion, human normal immunoglobulin (protein 10%), net price 2.5 g (25 mL) = £135.00, 5 g (50 mL) = £270.00, 10 g (100 mL) = £540.00, 20 g (200 mL) = £1080.00
Note Contains L-proline; contra-indicated in patients with hyperprolinaemia
Tim - do you have a doctor that will prescribe the Gamma? Have you researched the various brands and their costs? In the US IMIG per cc or gram - if you can even get it - is much more expensive than the brands that are used SubQ. So you might want to compare prices IMIG vs SCIG - weighing the costs per cc and per gram.
The SCIG/SubQ brands might cost less for you. SubQ is also less painful than IM!
I know some people with ME who have become significantly better after intravenous gammaglobulins.
Hip lots to look into there, you must have put quite a lot of time into researching that on my behalf so I am very brateful thanks. The fertility angle, I would not have thought about that, interesting.
Dr Nigel Speight between 1994 and 2001 had 7 severe cases of m.e /cfs (6 out of the 7 were tube fed so it sounds like they were very severe). 6 out of the 7 were given IM or IV immunoglobulin and 4 out of 7 made a FULL recovery.
Were these people who benefited from IVIG adults?