Holy crap -- IgM deficiency

[Eeyore]

@SOC I just meant "genetic causation" in a limited sense referring to why your family member got it and you and other relatives also got it, despite not being nearby - not in the more general sense.

I think most cases are viral onset - mine certainly was. It was just about the worst viral infection I ever experienced and I ended up in the ER.

Incredibly ironically, I was about halfway through a book called "The Coming Plague" by Laurie Garrett, which was a pretty new release at the time. I even remember the shirt I was wearing that morning - it was a Friday. Amazing how those days can stick with us forever. That's one thing that tends to be characteristic of ME too - patients can mark the line between sick and well, even decades later, to the day.

 

[SOC]

That's one thing that tends to be characteristic of ME too - patients can mark the line between sick and well, even decades later, to the day.

I can pinpoint it within a couple of hours. It was indeed like a line between well and sick. It was so very odd -- feeling perfectly fine and then a couple hours later feeling like complete crap and having very distinct cognitive dysfunction. Even though we knew nothing about ME as the time, we knew this was really peculiar. It stuck in our memory because it was so very, very odd. I can remember exactly where I was and what I was doing that day and evening.

 

[5150]

Yes it is interesting, particularly because he didn't live there. He was just there a few days on business and came home sick and never recovered. We all know that story.... So it's unlikely that for him it was something like mold exposure or any long-term environmental toxin exposure.


I have no firm belief about causation at this time. I don't think there's enough data. However, my current favorite theory is some kind of multiple-hit. We have a genetic immune weakness that alone wouldn't cause ME, but combined with the wrong pathogen leads to ME. It may not be the same pathogen for everyone, but it may be a limited set, perhaps ones that have a stronger impact on the immune system than others.

By my thinking, people with the same genetic weakness (such as family members) may never get ME if they don't encounter the wrong pathogen. On the other hand, people who encounter the same pathogen but have good immune systems don't get ME. Only those of us who got the double-whammy develop ME. This is not my original idea. It seems to be considered a likely possibility by a number of our top specialists.

I also think it's possible that pathogens perpetuate the condition. It may not be a single pathogen all the time in all of us, but I suspect many of us are almost constantly fighting some pathogen -- whether it's herpesviral reactivations, or enteroviruses, or Lyme, or just recurrent URIs.

I don't have much of an idea about the autoimmune theory. Everyone I know personally with ME has a clear viral presentation -- flu-like symptoms, viral onset, recurrent infections. I don't know any PWME who don't catch anything, so it's hard for me to envision -- not that I'm saying it isn't a normal ME presentation, just that I it's hard for me to really get into that theory yet because it doesn't fit the people I know. I'm waiting for more research to help me understand that particular picture.

Won't we all be laughing (yeah, right) if, when someone finally figures out this damned disease, we find it has nothing to do with pathogens or autoimmunity.

I am not yet over the retrovirus theory yet. It just makes too much sense, especially since it seems to be (may be) so stealthy. Unfound.
Interesting, my connection to the Incline Village time was from a person who had just returned from there after staying 6 months. My first clue was "I became lactose intolerant." & all down the big hill since then. over 30 freakin years of this "so called life".

 

[Ruthie24]

I don't have much of an idea about the autoimmune theory. Everyone I know personally with ME has a clear viral presentation -- flu-like symptoms, viral onset, recurrent infections. I don't know any PWME who don't catch anything, so it's hard for me to envision -- not that I'm saying it isn't a normal ME presentation, just that I it's hard for me to really get into that theory yet because it doesn't fit the people I know. I'm waiting for more research to help me understand that particular picture.

Won't we all be laughing (yeah, right) if, when someone finally figures out this damned disease, we find it has nothing to do with pathogens or autoimmunity.

My ME/CFS doc says his patients tend to run about half and half....those who "never get sick" and "those who get pneumonia if he sneezes around them".

I'll just be happy when they have enough of an understanding that we can laugh about it all.

 

[Daffodil]

@SOC I also came up negative on all testing but then positive on the LTT ELISPOT. Did you have that one?

 

[Daffodil]

hi Daff, is this implying that Lyme is contagious? why check it , if the CDC says it's 'maybe' contagious only through sexual contact? That isn't happening in Families that I know about. Anyway, can you please explain what you mean, so I can stop thinking about it? Thanks

@5150 ...I don't know..maybe Lyme is somehow contagious in other ways? I am just spewing nonsense really lol All I know is, antibiotics are really helping me now...but that could mean some bacteria has proliferated as a result of my already weakened immune system over the years...who knows.

But KDM seems to think Borrelia can suppress the immune system and he has been treating for almost 30 years....so it's worth it to get the LTT ELISPOT, I think. Even KDM seemed surprised that most of his patients were turning up positive.

Yea..the retrovirus theory does fit the best in my eyes....but there are all kinds of docs out there who believe all "autoimmune" disease is caused by intracellular bacteria which we cannot yet detect. Its well documented that sarcoidosis and reactive arthritis, for example, respond to antibiotics.

xoxo

 

[Eeyore]

@Daffodil - which antibiotic(s) are you taking? I doubt it's bacteria - bacterial infections are usually not subtle (granted there are exceptions - spirochetes can sometimes be fairly low grade, for example)

There are really good reasons to believe the retrovirus is impossible. Retroviruses have really long incubation periods, and they aren't very contagious. There's no way they could fuel an outbreak like Incline Village. Dr. Hyde talks about this at length - the pattern of the outbreak requires an incubation periods of several days - which rules out herpesviruses and retroviruses. Enteroviruses are almost certainly responsible for the epidemic forms such as Incline Village. It doesn't mean every case is enteroviral (I doubt that that is the case) - but some are, and mine almost certainly was. Furthermore, Lipkin's study conclusively disproved XMRV. Also, Dr. Klimas is an immunologist who split her practice between ME and HIV for years - she would have recognized it. We would detect reverse transcriptase, and we don't. There really isn't any good reason to believe a retrovirus is involved anymore - and all the ME specialists have really abandoned this theory.

@Ruthie24 - I'm in the "never get sick" category. I think the best explanation for this is cytokine storm - i.e. Production of interferon and other anti-viral cytokines protects us against new infections, while simultaneously making us feel sick.

 

[SOC]

@SOC I also came up negative on all testing but then positive on the LTT ELISPOT. Did you have that one?

Unfortunately not. ELISA and Western Blot are all I'm going to get around here. Maybe someday I'll find my way to a LLMD who will do a LTT ELISPOT because Lyme is certainly not outside the realm of possibility for me.

 

[Daffodil]

Unfortunately not. ELISA and Western Blot are all I'm going to get around here. Maybe someday I'll find my way to a LLMD who will do a LTT ELISPOT because Lyme is certainly not outside the realm of possibility for me.

You can order the test kit free from Armin Labs in Germany. Its 189 Euros and you don't even need a doctor's signature. Its the same lab KDM uses.

 

[Valentijn]

That's fascinating that you have that connection to Incline Village.

My best friend in law school was from Truckee, which is where the actual outbreak began at the high school. I got sick a couple years after we both graduated, and had some pre-ME symptoms prior to meeting her as well.

 

[SOC]

Sigh.... I'm not getting my IVIG today. The insurance company is balking. The hematologist said he has always managed to get IVIG covered by insurance, and my insurance company is usually good, so hopefully this is a temporary setback. Insurance is probably just trying to make the doc jump through hoops in the hope he'll decide it's not worth his effort and they won't have to pay. It's my impression that this particular doctor is a willing, capable, and determined hoop-jumper. Thank goodness.

 

[Eeyore]

The system is set up so that a persistent doc can get what he/she wants in most cases. They make it difficult, and there is nothing the patient can do if the doc won't fight. If the doc is up for a fight, he/she will generally win - but most just don't have time.

 

[SOC]

The system is set up so that a persistent doc can get what he/she wants in most cases. They make it difficult, and there is nothing the patient can do if the doc won't fight. If the doc is up for a fight, he/she will generally win - but most just don't have time.

Indeed. I think I'm lucky in this case. When the hematologist was talking to me about insurance, it seemed to be a matter of pride for him that he (and his staff) routinely successfully fight insurance companies for IVIG. I suspect many other doctors would already have given up and told me to wait another year while all my immunoglobulins continued to drop... until I was too sick to work at all.

I haven't heard anything more since yesterday, so I assume they are still fighting.

 

[heapsreal]

The system is set up so that a persistent doc can get what he/she wants in most cases. They make it difficult, and there is nothing the patient can do if the doc won't fight. If the doc is up for a fight, he/she will generally win - but most just don't have time.

The system sux, really.

I think once cfs/me recognized as a real illness then it should be easier to get treatments we need. I think there are a few treatments out there that can improve us but because we dont have cancer, hiv or an organ transplant patient we dont fit the exact criterias for alot of these immune treatments.

Pharmas want to make money and govts and insurance companies are trying to save money, we are stuck in the middle??

 

[SOC]

Systems that allow insurance company or government weenies rather than our own medical practitioners decide what is appropriate treatment for us make no medical or humane sense. Medical decisions made strictly on the basis of cost containment are foolishness, to say the very least.

Yes, as a society we need not to be wasteful, but physicians are generally intelligent human beings who can make reasonable decisions about cost-effectiveness. The few who are genuinely wasteful could be reined in without hamstringing the reasonable ones. That would have to be cheaper overall than the cost of having hundreds of thousands of business/government people second-guessing every decision made by decent doctors. The cost of the paperwork alone must be outrageous, to say nothing of the wasted physician time.

 

[heapsreal]

Good doctors for cfs that are seen to be prescribing too many treatments or testing too much are bullied by the system to reduce these tests and treatments.

 

[SOC]

Good doctors for cfs that are seen to be prescribing too many treatments or testing too much are bullied by the system to reduce these tests and treatments.

True. Mostly because we are perceived as not really ill and therefore undeserving of treatment. While I wouldn't really wish this illness on anyone, I do have moments of thinking that if these people had our illness for a few months, they'd change their tune PDQ.

 

[heapsreal]

True. Mostly because we are perceived as not really ill and therefore undeserving of treatment. While I wouldn't really wish this illness on anyone, I do have moments of thinking that if these people had our illness for a few monuninformed d change their tune PDQ.

Yes not looking ill. Recent experience yesterday when a relative said to my wife i didn't look sick as she heard i had been off work for over a week. my wife said he's here today because he's full of prednisolone. Oh and pain killers.

no harm done by relative, just uninformed. But some drs are like that too, if it was easy as looking at someone they wouldnt need scans and blood test to diagnose cancer etc?

 

[GONZ0hunter]

My INIM doc is an immunologist, so hopefully I'm covered there. We've just started talking about a vaccine challenge. I believe she was waiting until my IgG was consistently belowdecks range because she felt insurance wouldn't cover IVIG or SCIG until my IgG was low AND I failed the vaccine challenge.

My problem with a history of recurrent URI's is that my stupid local money-making venture calling itself a medical clinic kept claiming my symptoms were allergies (based on no testing) or asthma (also untrue as demonstrated by testing ordered by my specialist years later). Anything to keep from acknowledging I was ill or giving me any medications. Since I eventually recover (after months and months of URI symptoms), they feel justified in not treating. So my medical record doesn't show many recurrent infections, only the ones that eventually led to pneumonia. I finally gave up going to my PCP with infections because they only implied I was a whiner, gave me no treatment, and charged me an arm and a leg for the privilege.

Do the vaccine challenge. I had 0 lift in 10 of 12 pneumonia markers. I had low subclass 3 on test but it's common. So I have primary immune dyfincincy disorder selective IGE subclass 3 with no response to vaccine challenge.

I'm doing T cell infusions every 3 weeks

 

[JaimeS]

@SOC , first time I've seen this!

At Mayo, I found that my immunoglobulins were pretty much like yours - all on the low end of their 'scale', but searching online showed that I was below range according to other scales, and a quick scan showed I was in the lowest 10% for several. I'll look up that data soon so that I can be more specific.

-J