MCAS and IGG Treatment-The Journey Begins Again.

[ebethc]

Sadly this is a common experience. Our problems are so out of the box that standard medical responses fail. Even with speciality treatments its often the case the evidence is weak, but even there you cannot know if you don't try it.

i don't know why ppl can't figure out that protocols come from money and research -- even most doctors don't understand the pipeline... e.g.

funding -> research -> protocols defined -> doctors taught/trained -> patient benefit (cure or improvement)

I've never had a doctor say, "I'm sorry, but the science just isn't there yet" .. IOW, the truth. And, there are so many points of failure along the way... Even if you get the funds, they can be mismanaged (e.g., no plan or clear objectives, etc.) or doctors can never get more training after med school...

This concept is impossible for almost everyone in my life to understand... and it's impossible for me to understand why they don't get it! ...argh..

 

[Wishful]

I did have at least one doctor who admitted that modern medicine really didn't know all that much about the body, and that he just couldn't help patients like me with mysterious aliments (I didn't even know about ME/CFS at that time). I did admire his honesty, even if he couldn't help me.

 

[ebethc]

I did have at least one doctor who admitted that modern medicine really didn't know all that much about the body, and that he just couldn't help patients like me with mysterious aliments (I didn't even know about ME/CFS at that time). I did admire his honesty, even if he couldn't help me.

I have always been completely baffled by the fact that doctors can't just say, Sorry, but the science just isn't there yet.

 

[Gingergrrl]

I have always been completely baffled by the fact that doctors can't just say, Sorry, but the science just isn't there yet.

I feel the opposite and really have deep respect for the doctors who are not afraid to say to me, "I don't know the answer" and then follow it up with either "But I will help you as best I can" or "I cannot help you at this time".

What baffles me are the doctors who have no understanding of my case and either become very angry with me as the patient (due to their ignorance) or attribute it to a psychosomatic cause.

 

[ebethc]

I feel the opposite and really have deep respect for the doctors who are not afraid to say to me, "I don't know the answer" and then follow it up with either "But I will help you as best I can" or "I cannot help you at this time".

Agreed! I'm all for doctors who are willing to do homework... But then when it doesn't work, they can take it personally... Like, when they fail, it's really your fault. One of those doctors said: You're just one of those ppl who's always going to have something wrong w them. I looked at her and said, No, because this isn't sustainable.

What baffles me are the doctors who have no understanding of my case and either become very angry with me as the patient (due to their ignorance) or attribute it to a psychosomatic cause.

Agreed.

 

[ebethc]

@Learner1 @Gingergrrl @Misfit Toy or anyone else who's done IVIG ... a couple of questions, based on Hip's notes about IVIG in his roadmap (see below):

1) did Dr Kaufman/Maitland (or whomever is your doctor) share the success rate for IVIG among his/her patients?

2) did your Doc say that any specific test result(s) is a good way to identify candidates? e.g, low CD4

ref from Hip
https://sites.google.com/site/cfstestingandtreatmentroadmap/
Intravenous immunoglobulin (IVIG) and subcutaneous immunoglobulin (SCIG) has had mixed results, but can bring benefits (cost is around $25,000 for a course of treatment). Dr Chia finds 20% or so of his ME/CFS patients respond to IVIG.1 A study found ME/CFS patients with low CD4 counts before treatment are more likely to do well on IVIG.12 to More info: IVIG - MEpedia, IVIG and ME/CFS.


@Misfit Toy
This is interesting re SubQ...
"IVIG therapy can be extremely expensive costing several thousand dollars a month. Both Dr. Teitelbaum and Dr. De Meirleir have found that using low doses to cut costs can be effective. Finding no extra benefits from IV’s Dr .Teitelbaum advises using the less expensive intramuscular injections (@$50/vial)."

reference (scroll down)
https://www.healthrising.org/treati...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

 

[Learner1]

@ebethc My doctor treats patients as individuals, not as widgets on some roadmap.

In me, he confirmed several infections, found low total IgG, low IgG subclasses 1 and 3, low IgM, low NK cell function, and lowCD3 and CD4. He also identified 5 autoimmune problems, 3 he felt resulted from my viruses.

I was interested in his ability to help me as a unique individual, and anecdotally, he seemed to have helped other patients with a variety of problems.

All of my immune system problems have improved on IVIG over the past 7 months. I have had significant but manageable symptoms for 4-7 days after each IVIG treatment, and I do take a few more drugs than I'd like but the payoff is that I am slowly gaining back my old life and feel extremely fortunate to be getting this treatment.

I've seen the insurance company policies based on studies saying IVIG doesn't help ME/CFS. Here are some of the studies:

https://www.ncbi.nlm.nih.gov/m/pubmed/2239975/

https://www.ncbi.nlm.nih.gov/pubmed/2146875

https://www.ncbi.nlm.nih.gov/pubmed/9236484

These studies are 20-28 years old. A lot more is known about IVIG and about ME/CFS and related conditions. The criteria for diagnosing ME/CFS has evolved.

While I fit the IOM criteria for ME/CFS, my doctor was astute enough to look at my situation and my labs and used his experience with other patients to decide that trying IVIG would be a good bet, and he used a code for immunodeficiency to have my insurance approve it vs. using R53.82 or G93.3, which would not have been approved based on those studies. He told me to look at it as a 6 month project to start, and I will likely continue for awhile, now mostly to work on my autoimmunity.

Others I know on IVIG have also been approved for it based on other ICD10 codes than those for ME/CFS, ones which have shown IVIG to be of benefit.

Hope this helps.

 

[ebethc]

@Learner1

What I'm curious about is patterns.. identifying mine, and finding some overlap w successful treatments... that's one of the benefits of the hivemind I saw that low CD4 is a predictor of success in IVIG today, and it made me wonder if that test or another is useful for your Doc ... e.g., your comment here is along the same lines, I think??

"my doctor was astute enough to look at my situation and my labs and used his experience with other patients to decide that trying IVIG would be a good bet"

 

[Gingergrrl]

1) did Dr Kaufman/Maitland (or whomever is your doctor) share the success rate for IVIG among his/her patients?

My course of IVIG was decided by both my doctors (one an ME/CFS specialist and the other an MCAS specialist). My MCAS doctor is the actual prescriber of the IVIG so I can do it locally. They each looked at my case from different angles but were in agreement that high dose IVIG for autoimmunity was the best plan. They felt other immuno-suppressants (like Imuran or CellCept) were too dangerous and also felt that plasmapheresis was too dangerous. They both had success with patients using IVIG but I did not ask them for a specific rate. Although my MCAS doctor reported he had patients go into complete remission (from MCAS) from IVIG and this is what happened to me. My main doctor (the ME/CFS specialist) felt that if I was a responder to the high dose IVIG, then I might be a good candidate for Rituximab (which I turned out to be) but I did a full year of IVIG prior to the Ritux.

2) did your Doc say that any specific test result(s) is a good way to identify candidates? e.g, low CD4

I did not have low CD4 but I was doing IVIG for autoimmunity and not immune deficiency. I do not know if I had low CD4 earlier in my illness but I did not at the point that we started pursuing these treatments (2016).

Intravenous immunoglobulin (IVIG) and subcutaneous immunoglobulin (SCIG) has had mixed results, but can bring benefits (cost is around $25,000 for a course of treatment).

I am not sure what is meant by a course of treatment b/c for autoimmunity it is a 2-3 day cycle over a long course of time (sometimes two years). With insurance approval, my co-pay has been around $300 to $350 and if I had to pay $25K per infusion, it would not have been an option for me!

Dr Chia finds 20% or so of his ME/CFS patients respond to IVIG.1 A study found ME/CFS patients with low CD4 counts before treatment are more likely to do well on IVIG

I honestly have no idea about this statistic or if it pertains to me. I did a one-time consultation with Dr. Chia (which in my own case was not helpful) and he said that I was not a candidate for any treatment including IVIG. But as others have mentioned, his focus is enteroviruses (not autoimmunity, POTS, MCAS, etc) and I really was not the type of patient that he was used to seeing. I know he has helped many people, but he had nothing to offer in my case.

 

[Learner1]

The bills I'm seeing for my 1 day home infusions of IVIG are about $5400 each, where a nurse is with me for 10 hours. I easily went through my deductible and out of pocket maximum in January, so all the care my insurance deems valid is free for the rest of the year. (My nutrient and NAD+ IVs and supplements are out of pocket.)

"my doctor was astute enough to look at my situation and my labs and used his experience with other patients to decide that trying IVIG would be a good bet"

I believe that about 70% of the IVIG used in the US is used in autoimmune patients, for several well known autoimmune diseases.

Then, there are many types of immune deficiencies - the Immune Deficiency Foundation has a website and a nice reference book that describes all of them, snd the indications for IVIG.

My doctor has a lot of experience with AIDS patients, opportunistic infections, and broken immune systems, so he is able to look at all the various indications for IVIG that might fit each patient's situation, make good guesses on the tests required to prove the need, and get it approved by insurance.

I wasn't as lucky as @Gingergrrl to find a doctor near me to prescribe - the University of Washington is useless at ME/CFS , though they are great at gene splicing for babies with severe immune deficiencies. But my doctor in California was able to prescribe care through the home infusion service. Then the issue became managing the side effects. I ended up in the ER after my first treatment,an aging my head and neck swelling, but learned to manage it better afterwards. And my ND has been helpful with supportimg me through the symptoms and he's local.

 

[ebethc]

With insurance approval, my co-pay has been around $300 to $350 and if I had to pay $25K per infusion, it would not have been an option for me!

that was 25k for four treatments, I believe... but I don't know when, or the dosage..
-

thanks for the insight.

 

[ebethc]

The bills I'm seeing for my 1 day home infusions of IVIG are about $5400 each, where a nurse is with me for 10 hours.

is that total, or co-pay?

 

[Learner1]

Total. My copay is $0 after I met my out of pocket max.

 

[Gingergrrl]

I believe that about 70% of the IVIG used in the US is used in autoimmune patients, for several well known autoimmune diseases.

That is so interesting and I assumed the complete opposite (that most of the IVIG in the US was for immune deficiency vs. autoimmunity). I did not know that!

I wasn't as lucky as @Gingergrrl to find a doctor near me to prescribe - the University of Washington is useless at ME/CFS

I was extremely lucky and initially I tried to find a local neurologist to prescribe (along with our doctor who is 7 hrs north of me) but I could not find a Neuro willing to do it (actually I could not find a Neuro who was not a complete arse but that is another story). Then I realized that my MCAS doctor (who is local) was happy to prescribe and does so all the time for his MCAS patients. The infusion center nurses were all trained to work with MCAS patients because of him which was amazing.

He was not able to do the long drawn-out battle with my insurance company so my main doctor (our doctor) did that part and I was very involved in the process which took about four months. But once we finally got it approved, I've been doing IVIG for about 17 months with my next cycle to be next week. I could not have gotten IVIG without both of them and the entire experience has been like an intricate puzzle with many moving pieces.

that was 25k for four treatments, I believe... but I don't know when, or the dosage..

Even if it was for four treatments, I could not have paid it and the only option was insurance approval for me.

Total. My copay is $0 after I met my out of pocket max.

My insurance will never have a zero co-pay and they have caused me endless grief and misery (they keep dropping me from my plan and other nonsense) but I got the treatments which is the main thing.

 

[Learner1]

"IVIG therapy can be extremely expensive costing several thousand dollars a month. Both Dr. Teitelbaum and Dr. De Meirleir have found that using low doses to cut costs can be effective. Finding no extra benefits from IV’s Dr .Teitelbaum advises using the less expensive intramuscular injections (@$50/vial)."

My doctor said the dose I needed of IVIG would not be appropriate to get SubQ. He's had me on the low end of a higher autoimmune dose of IVIG.

I don't think I would have made the progress I've made with the low dose, and getting stuck with a needle multiple days a week and dealing with nausea and intestinal side effects gets old. At least I have 17 good days of every 21 day cycle.

 

[Gingergrrl]

My doctor said the dose I needed of IVIG would not be appropriate to get SubQ. He's had me on the low end of a higher autoimmune dose of IVIG.

The same for me and I was doing 82 grams each cycle (but have now tapered to 55 grams each cycle). Mine was too high of a dose for SCIG or SubQ.

 

[Learner1]

My insurance will never have a zero co-pay and they have caused me endless grief and misery (they keep dropping me from my plan and other nonsense) but I got the treatments which is the main thing.

I'm so sorry for your insurance issues and hope you're getting them resolved at ling last. I didn't mean to make you jealous...

The out of pocket max was significant, but once I bought the equivalent of a used car, my copay is $0 for the rest of the yrsr of what they approve of - I have 4 appeals going on of stuff they be bounced after the fact...

Some days I wish for single payer... But I see the pitfalls of that ...

 

[Gingergrrl]

I'm so sorry for your insurance issues and hope you're getting them resolved at ling last. I didn't mean to make you jealous...

Oh no, not at all and no worries. My insurance has been both a blessing and a curse (and I am still in the middle of my grievance in which they took my full payment for Jan and Feb but dropped me from my plan which is not only in bad faith but is illegal). But I have no other option at the moment and it got me my treatments so I am grateful. I'll stop here re: my insurance to not take MT's thread further off track .

 

[ebethc]

My doctor said the dose I needed of IVIG would not be appropriate to get SubQ. He's had me on the low end of a higher autoimmune dose of IVIG.

I don't think I would have made the progress I've made with the low dose, and getting stuck with a needle multiple days a week and dealing with nausea and intestinal side effects gets old. At least I have 17 good days of every 21 day cycle.

I believe @Misfit Toy said she was going the SubQ the last I read.. that was for her

 

[Misfit Toy]

I have not done any microbiome tests and it is not a focus of my treatment.

It's not a focus of mine either and honestly, when someone says you will never get well unless you help you microbiome, I am Leary. I agree the gut is a huge issue, but I have other issues that are foreshadowing it to a level of ....one...thing...at a time. I am on so many things right now suddenly.

Prednisone, Vitamin D, Iron, you name it. Everything tanked after my thyroid came out. It's more hormonal for me. I remember years ago I did antibiotics for my gut, then did the whole probiotics and then some. It changed nothing.

This time, the SIBO and leaky gut tests came back negative. I am okay with that...

@Gingergrrl -thank you! I so hope so, too. I am waiting for Maitland to order it as I talked to her and now she does not want me working with my doctor. I agree. Takach-my doctor is a stick in the mud. No thank you!

I have not been on here because I am so tired, or working. I have actually made some jewelry!

I see a dysautonomia neurologist on Tuesday.

Thanks, everyone. Thank you, @alex3619