Immuno Globulin IV

[cb2]

hi charles. i have been on several antibiotics, a few months at a time, 2 at the same time....rocephin, azithromycin, rifamipin, ceftin, clarithromycin, etc..i would have to look them all up. i have been kept on ceftin + clarithromycin for a long time now because the doctor must have had some clues that it was going to work.

i really am doing a lot better.

i love the way you are starting low ! with the antibiotics and ivig it almost sounds like you are working on lyme infection..? this is curious - thank you for the success story too!

 

[Daffodil]

i love the way you are starting low ! with the antibiotics and ivig it almost sounds like you are working on lyme infection..? this is curious - thank you for the success story too!

hi cb2...yes my doc thinks its lyme i guess. i have been sick 22 yrs and am being brought back from the dead - very very slowly, mind you. definitely not a success story yet as i am currently in a relapse lol

xox

 

[Daffodil]

@Jonathan Edwards ...Hi Jonathan. Hope you are around. I wanted to ask if you think my immunoglobulin would still be good if it was almost 2 degrees too hot for 2 days. i tried to contact the company but the head doctor is out of office ....ugh i screwed up the fridge temperature again.
thank you
sue

 

[Jonathan Edwards]

@Jonathan Edwards ...Hi Jonathan. Hope you are around. I wanted to ask if you think my immunoglobulin would still be good if it was almost 2 degrees too hot for 2 days. i tried to contact the company but the head doctor is out of office ....ugh i screwed up the fridge temperature again.
thank you
sue

I don't think I should give advice on that, you will have to go by the manufacturer's recommendations.

 

[cb2]

@Daffodil are you working with a lyme specfic dr? i am glad to hear you are getting better! yay! i have been sick along time too. it is important to remember the progress when we have set backs. hope the set back is short!

 

[Daffodil]

@Daffodil are you working with a lyme specfic dr? i am glad to hear you are getting better! yay! i have been sick along time too. it is important to remember the progress when we have set backs. hope the set back is short!

thanks cb2 I am at the point, where relapses don't bother me too much cuz I know I am on the right track. before, I never knew if the agony was ever going to end but now I do.

I am working with Kenny demeirleir....world famous CFS specialist, who is finding more of his patients are testing positive to lyme
xo

 

[cb2]

sounds like a good dr! i will be glad when Dr. Montoya's team at Stanford are more versed in Lyme.

 

[The Lady of Shalott]

I was diagnosed with both ME and fibro for years before i found that i had a pretty serious underlying neuromuscular autoimmune disease. None of my docs were sensible or smart enough to refer me to the correct area of medicine for this specialized testing. So I went undiagnosed for years and taking unnecessary medications and treatments that had side effects and made me much worse. Sort of like it would be for a patient here who tried IVIG for their ME, but didn't really need it because their immune system is working fine and they really have a chronic infection or some other underlying problem.

Hello Zach, please will you share with us what underlying neuromuscular autoimmune disease you were eventually diagnosed with after your years of M.E misdiagnosis? I think it would be very helpful for newly diagnosed M.E patients who might visit the forum, as well as long-term M.E'ers, to see yet another example they can show their GPs of the dangers of giving a 'CFS'/M.E label without then going on to do any further investigative tests.

 

[RYO]

Dear Zach00,
I actually share a lot of your concerns but one of the rules of PR, which we have to try to keep the right side of sensibly (which is not always easy I admit) is that members do not give advice as such. Your original post included phrases such as 'I do not recommend' and 'It's not worth the risk', although I realise that you end up saying that this is just your opinion. I also realise that I sometimes say things like this. However, I do try to make sure that I base this on documented evidence in the literature. 'Experience and research' can mean anything I am afraid. And you posts contain a number of simple factual errors.

There are very few reliable trials of IVIG for anything but there are small trials in ME showing efficacy, as well as some not showing efficacy. The situation for autoimmune neurological diseases is probably similar. The reason why IVIG is approved for some of these is that diseases of that sort can have a high mortality rate without treatment. The risk/benefit analysis is different. The evidence is much the same. Risk benefit analysis is very subjective and I think is up to an individual physician to consider in a way that can override formal approval status. Proof of autoimmunity or immune dysfunction is not a good rule for using a treatment when we have no idea how it works even in autoimmune disease. What matters is whether studies have shown effects.

I accept that you have the right intentions, but I am still a bit unclear why you should want to wade into discussing IVIG in ME (assuming you do not have ME) without checking that there are published trials of IVIG in ME. Maybe it is all a question of phrasing 'advice' the right way - which I may not always get right myself.

I would appreciate your thoughts on dosing of IVIG / SCIG in ME patients. If we follow the argument, that ME is possibly an autoimmune disease, then would it make sense to follow similar dosing protocols for such diseases as CIDP. My limited understanding is that higher doses of IVIG are needed for immunosuppressive effects. CIDP patients get a "loading dose" for 2-5 days, then later reduced to a lower maintenance dose.

However, there are threads in PR that mention anecdotal cases of patients responding to low dose SCIG / IVIG.

As a ME sufferer with very prominent muscle pain and low stamina/weakness, I have contemplated trial of SCIG with my rheumatologist. However, it feels like it is a risky endeavor given lack of data. What are you thoughts on dosing?

From a patient standpoint, my ME symptoms have deteriorated to the point that where I am finding it extremely difficult to work even part-time in the medical profession.

 

[Jonathan Edwards]

I would appreciate your thoughts on dosing of IVIG / SCIG in ME patients. If we follow the argument, that ME is possibly an autoimmune disease, then would it make sense to follow similar dosing protocols for such diseases as CIDP. My limited understanding is that higher doses of IVIG are needed for immunosuppressive effects. CIDP patients get a "loading dose" for 2-5 days, then later reduced to a lower maintenance dose.

However, there are threads in PR that mention anecdotal cases of patients responding to low dose SCIG / IVIG.

As a ME sufferer with very prominent muscle pain and low stamina/weakness, I have contemplated trial of SCIG with my rheumatologist. However, it feels like it is a risky endeavor given lack of data. What are you thoughts on dosing?

From a patient standpoint, my ME symptoms have deteriorated to the point that where I am finding it extremely difficult to work even part-time in the medical profession.

I cannot really advise on dosage. There are small published trials that suggest a possible benefit from IvIg. I do not remember the doses used. It is true that in general in autoimmune disease high doses are used.

 

[pogoman]

I am not saying do not get IVIG if you have evidence of an immune deficiency or autoimmune....

Hello Zach, please will you share with us what underlying neuromuscular autoimmune disease you were eventually diagnosed with after your years of M.E misdiagnosis? ......

I haven't posted in awhile, it's been a busy month good and bad

But anyhoo, I am currently doing IVIG for my muscle disease and saw this thread.
I did IVIG 5 days last month, just finished my 4th day of the second round and have 5 days next month.

I have no autoimmune inflammation or immune deficiency symptoms, however the IVIG has been effective in reducing the pain, fatigue and other symptoms.

My neuro didn't call it that but basically I have Necrotizing Autoimmune Myopathy which in many cases is triggered by statins or fibrates and does not have inflammation like other autoimmune diseases.
It's also known as Immune Mediated Necrotizing Myopathy.

It is a failry new disease, there's two antibody tests that I was negative for but about half the cases are ideopathic.
Most of the research has only happened the past 5 years and the tests about 2 years ago.

http://www.medscape.com/viewarticle/849320
http://nn.neurology.org/content/2/3/e96.full
http://rheumreports.com/?report=351&title=Autoimmune_Necrotizing_Myopathy_and_HMGCR_Autoantibodies-A_Little_Inflammation_Goes_a_Long_Way&c=ACR2015&r=/?c=ACR2015

It took my muscle biopsy results, high CK level along with an EMG retest to convince the second opinion neurologist that's what I have.

During the last few years they thought maybe it was Fibro but decided eventually to call it a noninflammatory myopathy and throw pain meds at it.