IVIG Treatment

[jimells]

I have two amazing doctors who are saving my life.

I've given up the idea of ever finding an amazing doctor. Before I became homebound I was bounced around from one specialist to the next. None of them had a clue. As far as I can tell, there isn't a single doctor in the entire state that knows anything at all about my illness or any aspect of it.

I canceled my last appointment because I was too sick to go to the doctor's office. How bizarre is that? I finally figured out that doctors' offices are not for severely ill people - they don't even have places for people to lay down! They seem to think that if a person is still alive, then their job is done, and if someone doesn't show up at the office they must be well.

I have found your case reports to be extremely helpful, even though I will never have access to any of these treatments. Why does IVIG appear to help mast cell activation - does anyone understand the mechanism?

Fortunately my possible MCAS symptoms (undiagnosed, of course) are nowhere near as severe as yours, although trying to stand when my blood pressure is 80/60 is a real challenge. And thank god that there are now lots of cheap non-prescription anti-histamines - they have kept me out of the horrid Emergency Room since my last "visit" in April.

There sure seems to be lots of patients here with mast cell problems, but so far researchers have shown almost zero interest in looking at a possible role of mast cells in ME, and of course most clinicians know little or nothing about ME, or mast cells, or POTS, or Neurally Mediated Hypotension, or IBS, or any of the other major groups of symptoms we experience. Overall, the current situation looks bleak to me, and the immediate future doesn't look so hot either.

 

[Jesse2233]

The elephant in the room here is cyclophosphamide. Indicators from Fluge and Mella seem to point toward this drug being far more effective than rituximab but with much worse side effects (not to mention the recent paper linking it to mito damage). If cyclo does indeed work, it potentially indicates both B and T cell dysfunction and a path forward in effective treatment but perhaps with less toxic drugs (e.g. CellCept).

Caveat of course being that there is a common etiology to a ME/CFS diagnosis

 

[RYO]

@Gingergrrl
I don't think you need to defend the improvements you have made. I am glad to hear that you have a therapeutic relationship with your physicians. Dr. Walter Koroshetz (Director of NINDS) at the NIH admitted during a recent interview that some of the clues may come from clinicians who want to help their patients with "off label" treatments.

However, I do not believe this is the best method forward in terms of overall research for ME/CFS. There are numerous physicians who have devoted their time towards helping ME/CFS patients. Similarly, this was the case in the early days of HIV/AIDS research. However, it was only through years of disease advocacy and subsequent millions spent ($32 billion global -2017) that an understanding of disease mechanisms developed through rigorous research.

My sense is that many pieces and parts have to come together for ME/CFS to stop being a medical footnote; an orphan disease. I think it was courageous and insightful for Jennifer Brea to start recording her daily struggles on an iPhone. The general public needs to see, hear and feel what it is like to live with this disease. We need to convince anyone who will listen that this disease is real and utterly devastating. We need to convince community leaders, politicians, doctors, nurses, our neighbors and sometimes our own family members.

I am very grateful to organizations such as Solve ME/CFS. I hope they will continue to grow and increase their influence.

I hope you maintain your improvements and make further progress.

 

[Countrygirl]

Hi:

I am seeing a new Doc who thinks my ME/CFS may be related to auto-immune issues. Many of you know who this Dr is and some of you have had success with his treatments. I will be having his myriad of testing done and from that point we will try to develop a plan of action.

I have been severely ill for 10+ years.....bedbound the last 6-7. I have debilitating fatigue, unrefreshing sleep, severe NMH, HPA dysfunction, EDS....etc. The only area I am lucky in this disease is my cognition is not severely affected, more moderate. The worst things are inability to sleep well and inability to stand more than 5-10mins b/c of severe NMH.

Anyway, if results come in as Doc expects we may be looking at IVIG and ritux treatment. I know several of you have had success with this approach. I am wondering if ppl who have tried this approach wld be willing to share their experiences. Have you improved? Have some gotten worse with this treatment?

I am very gun shy but also desperate. Every treatment I have tried has either made me worse or had no affect at all.

I know this is a very broad question, but I am too ill to make it more precise. Any feedback received is greatly appreciated.


Warmest Regards to Everyone!

Hi @Navid . Thanks for starting this interesting thread. A number of the well-known UK ME experts from some years ago, found that the treatment was effective, sometimes very effective in some patients.

I have this document in my files and you may find something of interest in it. (My computer won't let me upload it so I hope it is readable it I paste in here>


‘TREATMENTS WITH ‘SCIENTIFICALLY PROVEN VALUE FOR CFS’

SUPPORTING REFERENCES


The diagnosis, treatment and management of chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME) in adults and children: work to support the NICE Guidelines;

Anne-Marie Bagnall, Susaznne Hempel, Duncan Chambers, Vickie Orton, and Carol Forbes; Centre for Reviews and Dissemination, University of York, October 2005.


According to this review, published evidence supporting the efficacy of immunological interventions comprises:


IMMUNOLOGICAL

164. Lloyd A, Hickie I, Wakefield D, Boughton C, Dwyer J. A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. Am J Med 1990;89:561-8.

168. See DM, Tilles JG. alpha-Interferon treatment of patients with chronic fatigue syndrome. Immunol Invest 1996;25:153-64.

169. Strayer DR, Carter WA, Brodsky I, Cheney P, Peterson D, Salvato P, et al. A controlled clinical trial with a specifically configured RNA drug, poly(I).poly(C12U), in chronic fatigue syndrome. Clin Infect Dis 1994;18 Suppl 1:S88-95.

173. Andersson M, Bagby JR, Dyrehag L, Gottfries C. Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome. Eur J Pain 1998;2:133-42.

174. Zachrisson O, Regland B, Jahreskog M, Jonsson M, Kron M, Gottfries CG. Treatment with staphylococcus toxoid in fibromyalgia/chronic fatigue syndrome--a randomised controlled trial. Eur J Pain 2002;6:455-66.

175. Diaz-Mitoma F, Turgonyi E, Kumar A, Lim W, Larocque L, Hyde BM. Clinical improvement in chronic fatigue syndrome is associated with enhanced natural killer cell-mediated cytotoxicity: the results of a pilot study with Isoprinosine. J Chronic Fatigue Syndr 2003;11:71-93.

216.


DESCRIPTION FROM ‘YORK REVIEW’ (refs below)

Immunoglobulins

Three RCTs of participants diagnosed with CFS investigated the effects of immunoglobulin in adults; two found some positive effect, and the third found no effect of treatment.

(I) Trial 164 One RCT found greater improvements in the intervention group on symptom scores and functional capacity but not in depression, immune outcomes or quality of life. [164]

Withdrawals: 2 immunoglobulin recipients withdrew from study: one because of mild, but transient, abnormal liver function tests, other withdrew voluntarily after phlebitis had occurred with the first infusion

Adverse events: Phlebitis and constitution symptoms including headaches, worsened fatigue and concentration impairment occurred more commonly in the immunoglobulin recipients than in the patients who received placebo. Phlebitis occurred in 35/65 immunoglobulin infusions & with 1 placebo infection, constitutional symptoms occurred in 53/65 immunoglobulin infusions and 19/78 placebo infusions.

(II) Trial 165 A second smaller RCT found improved immune measurements (physiological outcome) but not functional or symptom measures. [165]

(III) Trial 166 A third RCT, which was the largest in the immunoglobulin category, found no improvement in any of the outcomes investigated (functional status, mood, immune outcomes and quality of life). [166] QUERY – see below

(IV) Trial 216 One RCT of immunoglobulin G included only children [216] A significant improvement in functional score (based on attempts and attendance at school or work and physical or social activities) was reported in the intervention group compared to the control group. Significantly more children in the intervention group had an improvement in score of 25% or more. (No participants dropped out due to adverse effects)

(I) and (II) Trials 166 and 164 A second RCT of immunoglobulin included both adults and children according to standard definitions, although no participants under the age of 16 were included. [166] Significant improvements were seen in symptom scores and in functional capacity in the intervention group compared to the control group. THIS WOULD APPLY TO 164 ALSO


Adverse Effects Some severe adverse effects were noted in participants in the immunological intervention groups. … two people from immunoglobulin treatment due to severe constitutional symptom reactions. [166] One recipient of immunoglobulin therapy also withdrew due to mild but transient liver failure [164] and phlebitis has also been noted with immunoglobulin infusions. [164]


Summary Four RCTs assessed the effects of immunoglobulin in patients with CFS, of these one showed an overall beneficial effect [216] one showed some positive effects [164], and two found no effect. [165, 166] All four of these RCTs scored reasonably well on the validity assessment, achieving scores of between 13 and 16 out of 20.


164. Lloyd A, Hickie I, Wakefield D, Boughton C, Dwyer J. A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. Am J Med 1990;89:561-8.

165. Peterson PK, Shepard J, Macres M, Schenck C, Crosson J, Rechtman D, et al. A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome. Am J Med 1990;89:554-60.

166. Vollmer-Conna U, Hickie I, Hadzi-Pavlovic D, Tymms K, Wakefield D, Dwyer J, et al. Intravenous immunoglobulin is ineffective in the treatment of patients with chronic fatigue syndrome. Am J Med 1997;103:38-43

216. Rowe KS. Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents. J Psychiatr Res 1997;31:133-47.

See also Question 2 studies – Bates (115), Miller (109),

See also Lloyd immunoglobulin & CBT study


Staphylococcus Toxoid

The effects of vaccination with staphylococcus toxoid were investigated in one small controlled trial of patients with CFS (n=28) [173] and one fairly large RCT (n=98) [174]. In the controlled trial, no differences were reported in depression, pain or psychological outcomes between the intervention and control group. However, a greater improvement in the clinical global impression in the treatment group was found. In the RCT, the treatment group had a significantly better outcome than the control group for global impression and one item on the fibromyalgia impact questionnaire.

A positive effect was found in one small controlled trial of staphylococcus toxoid [173] and one larger RCT [174]


Re the 2002 Review:

The effectiveness of interventions used in the treatment/management of chronic fatigue syndrome and/or myalgic encephalomyelitis in adults and children. A Bagnall et al. NHS Centre for Reviews and Dissemination, University of York, September 2002.

This review of research findings, commissioned by the CMO’s Working Group, identified a total of 21 interventions – grouped under the categories immunological, antiviral, pharmacological, supplements, complimentary/alternative, behavioural, and ‘other’ – which showed some evidence of effectiveness in controlled trials.

§ From among this group, behavioural interventions have risen to prominence because of the number of trials conducted, this reflecting their relatively greater success in securing funding.

§ Other interventions have indeed shown evidence of efficacy, but mostly in a smaller number of studies.

It is notable that use of the immunological agent Immunoglobulin G, which demonstrated effectiveness in three out of four randomised controlled trials (seep45) receives no mention at all in the discussion of therapeutic strategies in the Working Group Report.[1] NB This is exactly the same incidence as pertained to CBT Trials at this point.





[1] A Report of the CFS/ME Working Group: Report to the Chief Medical Officer of an Independent Working Group. London: Department of Health, 2002, pages 45-51.

 

[PinkPanda]

I can't say much on IVIG, no experience or knowledge there.

(I hope this doesn't go too much off topic)
Concerning the autoimmunity, antibodies against M acetylcholine and β adrenergic receptors were found in part of ME/CFS patients, but also in some of the controls?

Although I think a subtype of ME/CFS might have some involvement of autoimmunity, I don't think it is necessarily a full-blown autoimmune disease comparable to hashimoto, diabetes,..

I think, autoimmunity may play some role in a ME/CFS subtype, like other people with ME/CFS have benefits from antivirals without having an active viral infection.
Or like there is a state of chronic inflammation, with raised inflammatory markers without actually having a clear cause, like an inflamed toenail or whatever.

Also, I could imagine that some other factors like genetics might combine with the antibodies in ME/CFS in comparison to controls. Neil McGregor found a higher number of SNPs in ME/CFS patients concerning G protein coupled receptors (Reference).

If this impacts G protein coupled receptors, and then in addition someone has antibodies against M acetylcholine and β adrenergic receptors (M acetylcholine and β adrenergic receptors are a part of G protein coupled receptors), this might further impact G protein function further.
In the study on M acetylcholine and β adrenergic receptors they gave Rituximab and it lowered the M acetylcholine and β adrenergic receptor antibody levels (Reference).

So maybe some medications targeting autoimmunity might relieve the impact on G protein coupled receptors a bit.


Anyways, if there is no indication of autoimmunity found at all, I don't think I would try autoimmune medication, because then maybe you could also have another ME/CFS subtype, where autoimmunity is not an issue (Just what I would do, not medical advice).

 

[Gingergrrl]

Why does IVIG appear to help mast cell activation - does anyone understand the mechanism?

I honestly do not know the answer and when I started IVIG, it was initially in the hope of controlling my severe shortness of breath, POTS, and muscle weakness. But it put my MCAS into complete remission before it even touched the other symptoms (which came much later).

although trying to stand when my blood pressure is 80/60 is a real challenge.

I totally relate to this and my BP was approx 80/50 for 2-3 yrs. The IVIG also improved my BP so it is now 100/70 on most days. But again I am not sure of the mechanism but my cardiologist said it is very common.

And thank god that there are now lots of cheap non-prescription anti-histamines

Definitely and all of my MCAS meds are OTC, or supplements, except for Ketotefin and Atarax. And I only have Atarax b/c I do not tolerate Benadryl well but most people do and it is OTC. And at this point, I only take the Atarax as a pre-med for treatment.

However, I do not believe this is the best method forward in terms of overall research for ME/CFS. There are numerous physicians who have devoted their time towards helping ME/CFS patients. Similarly, this was the case in the early days of HIV/AIDS research. However, it was only through years of disease advocacy and subsequent millions spent ($32 billion global -2017) that an understanding of disease mechanisms developed through rigorous research.

I totally agree with you @RYO and there needs to be more funding and more research. I did not mean that the path I took is the only path vs. that I believe there are a group of people who could benefit from IVIG and/or Rituximab and I don't want them to be lost to potential treatment that could help them. But to me it is not an either/or scenario and I support OMF and the other research organizations and charities 100%.

I hope you maintain your improvements and make further progress.

Thank you so much and I really appreciate it.

In the study on M acetylcholine and β adrenergic receptors they gave Rituximab and it lowered the M acetylcholine and β adrenergic receptor antibody levels (Reference).

These are the auto-antibodies that I was positive for (anti-muscarinic/cholinergic and beta-adrenergic) amongst several others. It is part of what led to my diagnosis of Autoimmune POTS (vs. a different type or cause of POTS). I am hoping that some day soon these tests become available in the US.

 

[Sushi]

In order to ensure that the forum is welcoming and comfortable space for all members, the moderation team will be editing posts that step over the lines laid down in the forum rules concerning courtesy and respect in posting--personal attacks will not be tolerated. As a reminder, here are some points from our rules about what constitutes a personal attack:

· referring to a treatment that a member finds helpful in a contemptuous manner

· belittling a member using sarcasm

Anyone who posts in this manner may have their post edited and if they continue they will be banned from the thread.

 

[Ema]

@Ema
We need both. They are not mutually exclusive. I would like good science delivered by caring practitioners.

Yes, for sure.

But then again, I'm not the one trying to exclude everything but a randomized controlled trial from the broad umbrella called "evidence".

Given the stakes, without any clear research answers at the moment, I think people have a right to choose what they are willing to risk to get better, knowing full well that some treatments may actually end up making them worse.

Some people are naturally bigger gamblers than others, and one way is not better than another, in my opinion. It's personal. The only clear wrong is when people who don't have anything to do with another person's medical treatment feel entitled to criticize it endlessly.

 

[RYO]

@Gingergrrl

I want to be clearer about "off label" use treatments and medications. Physicians and ME/CFS patients are unfortunately in a tenuous situation. It is the duty of the physician to clearly review the risks and potential benefits with the patient. They may be scarce but there are doctors who appreciate the suffering of ME/CFS patients and genuinely want to help.

IVIG and Rituximab are not what I would consider low risk medications/treatments.

Unfortunately, it is difficult to appreciate the apprehension of doctors who sometimes have seen first hand a patient who is given IVIG suffer from unanticipated complications such as dangerous arrhythmias, congestive heart failure or acute renal failure unless you have been in their shoes as the treating./prescribing physician.

Rituximab is a powerful immunosuppressant and although serious side effects may not be common, severe infusion reactions, serious infection, PML and other serious reactions can occur.

I get it. When you wake up every day feeling like instead of living, you are being tortured, your willingness to take on risk changes.

We are vulnerable... which takes us back to square one. No one has a clear understanding of this disease. LET US ALL PROCEED WITH CAUTION.

 

[Gingergrrl]

I saw my MCAS doc today, who is a very well respected allergist & immunologist, and want to report about my appt. I want to give the disclaimer that his advice and instructions, combined w/those of my main doc, are solely regarding my case and may not pertain to anyone else. However, in case any part of it is helpful to anyone else, I would truly feel bad not sharing it. I am getting my physical health back, piece by piece, and I promised myself if I were ever so blessed to have this happen, that I would not disappear from PR and I would share my story. I am hoping and praying that I will not be told again that my docs or treatment are "bullshit" but if this occurs, I am an adult and can cope with it.

The appt today was about my plans for 2018 re: IVIG & Ritux (which both of my docs are in complete agreement on) but I need to give some back story and then will get to that part. Prior to my appt today, I'd done some bloodwork for my main doc which revealed that I continue to have an elevated IgM. This has been going on for a couple years (and pre-dates my IVIG or Ritux). Because it is remaining elevated, my main doc ordered a test from Lab Corp (that I have not done yet) called: "Immunofixation (IFE), Serum, Protein Electrophoresis (PE), Serum, and Quantitative Free κ and λ Light Chains (FLC) Plus Ratio, Serum".

We want to rule out MGUS and even cancer like lymphoma & multiple myeloma. My main doc said he absolutely does NOT think that I have cancer but is being thorough b/c of the long-standing elevated IgM. I'll be doing a phone consult w/him next week but have not discussed this w/him in detail yet. However, the other abnormality in my bloodwork is that my EBV PCR DNA test is now positive at 110 and had been negative at zero. My main doc suggested that I go back onto an anti-viral like Famvir to try to lower it before it increases more. We will also discuss this in my consult next week.

I showed the blood tests to my MCAS doc today and he said, verbatim, that "The EBV virus has a tendency to turn into autoimmunity" which exactly matches what my main doc told me. I asked him if the elevated IgM could be from IVIG itself and he said no b/c it is a "different molecule". However, he said that the positive EBV PCR test could be elevating my IgM as my system is trying to fight the virus. He agreed w/my main doc that it might be good to go back onto an anti-viral but also agreed w/him that we should re-run the test first to see if it is increasing or decreasing.

Right now it is at 110 (the EBV PCR) and I asked him how high it could go and he said, "It could go into the millions". I told him that I'd taken Famvir for eight months in 2014 but it did not help my symptoms whatsoever. He said, it would NOT be for symptom relief, it would be to stop the EBV virus from replicating since EBV is implicated in autoimmunity, in certain cancers, and if it got too high, it could re-activate mono (which would be horrible b/c I had severe mono in 2012 which started this entire illness).

My MCAS doc also said that the elevated IgM could be from the MCAS itself since with MCAS, your body is constantly fighting something that it perceives as allergic or foreign (not an exact quote and that part is from memory). He was thrilled that my MCAS remains in remission and all my MCAS blood tests are normal except elevated IgE (but I think this will be life-long). He said that today was the best he had ever seen me in 2.5 years. I was walking around without wheelchair, dressed normally and wearing make-up, and had gotten my hair cut and colored and it is just obvious that I can breathe better and have more stamina.

Both of my docs feel that I am a responder to Rituximab, and my B cells remain at zero (which is where we want them). My next Ritux infusion (barring insurance denial) will be end of Jan/early Feb and my next IVIG will be Jan 11-13th. My MCAS doc said that he feels the IVIG is "protective" while I am doing Ritux, especially now that my EBV PCR is slightly positive. My next IVIG will be at a 5-week interval but after that, we'll reduce it to a 6-week interval. He'd love for me to taper off Cortef (b/c he felt at this point the Cortef is more dangerous for me than any other treatment I am doing) but in both of my prior tapering attempts, I was allergic to food within one week and headed toward an adrenal crisis. So he said to wait and speak to my Endo (who I am seeing next Fri). I scheduled all of these appts in Dec b/c I truly thought I was losing insurance next year (per a letter I received) but thank God, it looks like I am not.

I asked my MCAS doc what he thinks will happen once I (ultimately) stop IVIG and Ritux b/c my main doc refers to this as the "Million dollar question". He was honest and said that he could not predict BUT he has had patients with MCAS and other immune problems (both deficiency and autoimmunity) in which the IVIG and/or Ritux completely "re-set the immune system" and he has seen the B-cells grow back healthy. This would be my dream scenario but I am realistic and do not know if it will occur. Although I am vastly improved, I still can only walk in segments (with sitting in between) and I cannot drive or climb stairs. But I feel these things are really close and I might get there.

So the IVIG and Ritux are set (barring insurance problems) and after my consult w/my main doc and re-running some blood work, we will decide if I go back onto an anti-viral to stop the EBV from replicating. I can't imagine being as sick as I was when I had mono in 2012.

My other fear is what the Immunofixation/ Protein Electrophoresis test will show (re: my elevated IgM). I'm hoping that the reason it is elevated is from the EBV or MCAS. But the thought of cancer, especially multiple myeloma, scares me b/c this is the exact cancer that my step-daughter's mom died of at age 39. If I were to have this, too, the coincidence would be unbelievable.

 

[Navid]

Gingergrrl: positive thoughts with you as always; and thank you for continuing to share despite all the loud banging of pots and pans throughout the thread!

Your message still rings bright and hopeful through the noise.

 

[Ema]

I continue to have an elevated IgM. This has been going on for a couple years (and pre-dates my IVIG or Ritux). Because it is remaining elevated, my main doc ordered a test from Lab Corp (that I have not done yet) called: "Immunofixation (IFE), Serum, Protein Electrophoresis (PE), Serum, and Quantitative Free κ and λ Light Chains (FLC) Plus Ratio, Serum".

We want to rule out MGUS and even cancer like lymphoma & multiple myeloma. My main doc said he absolutely does NOT think that I have cancer but is being thorough b/c of the long-standing elevated IgM.

I have another friend who also has a long standing elevated IgM.

She has had the test above as well, in the interests of being thorough, and it has never been cancer. So I am extremely optimistic that will be the case for you as well and that your MCAS doctor is correct...it's a sign of immune activation.

Now if I could only get my other friend to consider trying some MCAS treatments instead of (or at least in addition to!) the endless rounds of antibiotics.

 

[Nickster]

@Gingergrrl
I am so happy to hear that your treatments are working. I admire your perseverance to tell your story on PR or other sites no matter who questions you (doctors or others). Because if we don't hear the truth than we as a community of the sick are beaten down. Please continue to stick up for yourself and tell your truth. You are helping so many of us both with your will of justice and knowledge.

I hope you continue to have success!

 

[Gingergrrl]

Sorry for my delayed reply and thank you @Ema, @Navid and @Nickster for your support (and to countless others on PR along the way) and I really appreciate it.

 

[justy]

There sure seems to be lots of patients here with mast cell problems, but so far researchers have shown almost zero interest in looking at a possible role of mast cells in ME, and of course most clinicians know little or nothing about ME, or mast cells, or POTS, or Neurally Mediated Hypotension, or IBS, or any of the other major groups of symptoms we experience. Overall, the current situation looks bleak to me, and the immediate future doesn't look so hot either.

I couldnt agree more re mast cells and M.E/CFS I now have more severe MCAS all the time. I am almost a prisoner in my home because of it and can barely eat any foods. I continue to have minor constant reactions even with safe foods, tons of meds and a mask. i really had no idea what hell was until the MCAS came on the scene. Why, with so many of us suffering from it and various co morbids is this not being studied.

Dr Afrin seems to feel that those of us with MCAS have it as a primary dx and we are misdiagnosed with M.E/CFS. I dont know. I now have a dx of: Severe M.E, MCAS, EDS H, MVP with regurgitation, pelvic organ prolapse, coccydynia and still waiting to be well enough to travel to a cardiologist that deals in POTS, it seems likely i will have it.

I continue to have an elevated IgM.

I dont know if you remember, but i have this too. Would you mind saying how elevated your is? mines been like this since the MCAS got worse and is only slightly elevated. My GP has been told its just a variation of normal, my M.E Dr thinks its a chronic infection and my MCAS DR just shrugs. My GP wont do any further testing around this.

.it's a sign of immune activation.

Yes, thats what KDM told me. NHS GP says its just 'normal'.

 

[justy]

@Gingergrrl just to say how thrilled i am for you - following your story from the start and it is so inspiring how you have persevered. I feel frustrated that without access to the kind of Drs you have and a health care system where treatments can be accessed i will never know what is really making me ill or be able to treat it.

 

[Ema]

i really had no idea what hell was until the MCAS came on the scene.

I'm so sorry, @justy. I felt the same way about my experience with MCAS. It is so frightening and I hope you can find some relief soon.

Is Xolair an option for you, at all?

 

[Gingergrrl]

I now have more severe MCAS all the time. I am almost a prisoner in my home because of it and can barely eat any foods. I continue to have minor constant reactions even with safe foods, tons of meds and a mask. i really had no idea what hell was until the MCAS came on the scene. Why, with so many of us suffering from it and various co morbids is this not being studied.

@justy, I am so sorry and it was the MCAS in 2015 that made my life a living hell as well when I reached the point of anaphylaxis to all food but water. I wish so badly that you could see an MCAS specialist but there are very few even in the US. I literally hit the jackpot when I found mine in July 2015 b/c he is only 45 min south of me. He is close to retirement and I am in great fear of this b/c he is the prescriber of my IVIG and Rituximab so I can do it locally at his infusion center.

Dr Afrin seems to feel that those of us with MCAS have it as a primary dx and we are misdiagnosed with M.E/CFS.

My MCAS doc has a little different perspective (but I have no idea who is right)! He said that if someone has mastocytosis (in any form) than this is the primary illness. But he views MCAS (in any form) as a secondary illness to something else. That is why he is not surprised that mine went into remission from high dose IVIG. I was gobsmacked, and still am, but he has seen it a lot with high dose IVIG. I truly do not understand the mechanism.

still waiting to be well enough to travel to a cardiologist that deals in POTS, it seems likely i will have it.

I truly hope that you will be able to see the POTS cardio soon and at least get some basic meds for POTS. I take Atenolol and Midodrine but have tried many things along the way that did not help or made me worse.

I dont know if you remember, but i have this too. Would you mind saying how elevated your is? mines been like this since the MCAS got worse and is only slightly elevated. My GP has been told its just a variation of normal, my M.E Dr thinks its a chronic infection and my MCAS DR just shrugs. My GP wont do any further testing around this.

I do remember that you had elevated IgM but I don't remember how high yours was? I'm sure the test ranges differ but mine was tested by Lab Corp in the US and the range for IgM is 26-217 and mine is 306. So it is a bit high but it's not in the thousands. Mine has been high for several years (before I ever did IVIG or Rituximab). My ME/CFS doc has been monitoring it and we finally decided that it was worth doing additional testing to rule out other illnesses, especially cancer, since it is not going down. I will not be able to do this testing until after Christmas but my doc said it is okay and I'll be doing a phone consult w/him next Thurs.

It could be due to chronic infection or MCAS/autoimmunity and one or both of these is the most likely culprit in my case but I will be relieved to rule out something more serious. Will your ME/CFS doc run the test for you through a lab in Belgium (or Reno?) if you cannot get it in the UK?

@Gingergrrl just to say how thrilled i am for you - following your story from the start and it is so inspiring how you have persevered. I feel frustrated that without access to the kind of Drs you have and a health care system where treatments can be accessed i will never know what is really making me ill or be able to treat it.

Thank you so much, Justy, and I would literally hide you in a suitcase and fly you here if it could get you the testing that you need. It definitely is challenging, even here, b/c the insurance companies make it so incredibly difficult and I would not have ever gotten this far without my background in social work and advocacy. My husband and I are literally postponing our divorce for another year so I can finish these treatments and not lose my insurance (but this is another story and I will not go off topic)!

Is Xolair an option for you, at all?

That's a great question for Justy and I have never tried Xolair but many patients come to my infusion center to get their Xolair shots (while I am there for IVIG). My understanding of it is that it works for people with MCAS who also have a history of asthma (which I do not but I believe Justy does?) so this might be worth investigating (Justy) although I know it is not without side effects like everything else.

Edit: Typos and clarity