My trip to see Professor De Meirleir (long post)

[Daffodil]

hi justy. I got this from the mayo clinic website:

"Elevation of immunoglobulin M may occur in monoclonal gammopathies such as macroglobulinemia, primary systemic amyloidosis, monoclonal gammopathy of undetermined significance, and related disorders."

xo

 

[JaimeS]

My IGG levels and subclass levels are normal, however I have had raised IGM for some time now, but I don't know why. I recently discovered my self, by requesting my old hospital notes that about 7 years ago I was tested for immune response to pneumonia and I don't seem to make a response - and I have had pneumonia three times in my life - the past two times in the last 7 years. This could be a type of specific immune deficiency. It wasn't followed up on by the requesting Dr.

Igs can be elevated to compensate for other, lowered Igs. You seemed to be referring to that in your post, @justy , but the relationship isn't only IgG(low):IgM(high)... that is just the most commonly found combo.

For example, my IgG subclasses are borderline low, but it's my IgA that's clinically low every time. Supposedly, IgM should be elevated in response. My IgM is dead-center normal. Instead, it's my IgE that's through the roof, which may be to compensate.

This could be due to infection alone, but in context it seems to be directly proportional to my IgA.

I've read about this a bit recently, so I can say with relative confidence that any elevated Ig can be in response to any lowered Ig.

Therefore, it could be that what you have is IgA(low):IgM(high). Maybe. Have you gotten your IgA checked?

Oh, and let's not forget that you and I have a LOT of the same symptoms and a LOT of the same bloodwork values. If you haven't had it checked to see, it is definitely worth doing!

Also, low IgA is helped by IgG replacement therapy, since IgG infusions contain small amounts of IgA as well.

-J

 

[justy]

Igs can be elevated to compensate for other, lowered Igs. You seemed to be referring to that in your post, @justy , but the relationship isn't only IgG(low):IgM(high)... that is just the most commonly found combo.

For example, my IgG subclasses are borderline low, but it's my IgA that's clinically low every time. Supposedly, IgM should be elevated in response. My IgM is dead-center normal. Instead, it's my IgE that's through the roof, which may be to compensate.

This could be due to infection alone, but in context it seems to be directly proportional to my IgA.

I've read about this a bit recently, so I can say with relative confidence that any elevated Ig can be in response to any lowered Ig.

Therefore, it could be that what you have is IgA(low):IgM(high). Maybe. Have you gotten your IgA checked?

Oh, and let's not forget that you and I have a LOT of the same symptoms and a LOT of the same bloodwork values. If you haven't had it checked to see, it is definitely worth doing!

Also, low IgA is helped by IgG replacement therapy, since IgG infusions contain small amounts of IgA as well.

-J

I just had my IGA checked as I had a really bad reaction to gamma globulin injections and felt like I had severe flu for three weeks. This can happen if your IGA is low and you develop anti IGA antibodies and then take blood products like SCIG. It turns out my IGA is in healthy range. My IGG is also completely normal and so are my IGG subclasses. The IGM has been elevated for over a year, every time its tested.

 

[JaimeS]

I just had my IGA checked as I had a really bad reaction to gamma globulin injections and felt like I had severe flu for three weeks. This can happen if your IGA is low and you develop anti IGA antibodies and then take blood products like SCIG. It turns out my IGA is in healthy range. My IGG is also completely normal and so are my IGG subclasses. The IGM has been elevated for over a year, every time its tested.

Fascinating! (Uh, can I say that without offense?)

Just isolated, high IgM... huh.

[Edit: Apparently, normal IgG with elevated IgM is common in ALS and in MS... and therefore probably in other neuromuscular disorders as well.]

-J

 

[Gingergrrl]

Hi @justy

Hi! I am still trying to figure out what to do with the Ketotifen. It has given me an increase in functioning, that is quite noticeable (meaning that MCAS is playing a bigger part in my health problems than we realised and has been around for longer than we realised).

Ketotefin was a life-saver for me as well (quite literally!)

However, I can only take 1/4 of a 1mg tablet. If I take less I itch all night, if I take more I also itch all night. The 1/4 mg just helps a little to stabilise the itching but not completely. Someone has suggested it could be the corn in the tablet, but I eat corn at times with no problems 9although I have often suspected I shouldn't). Really frustrated as we don't have compounding pharmacies here...

I take 2 mg 2x/day (4 mg total per day) and am really wondering if you are reacting to corn or another potential filler in the med. Do you mean that you do not have any compounding pharmacies in the UK or just not in your area? Most will ship meds to other parts of the country (at least in the US.)

My compounding pharm for the Ketotefin in very close to where I live and they understand MCAS and make it with no allergen fillers in a special veggie capsule. I have no idea if my pharm would ship to the UK but I can give you the info if you want.

Whereas, the compounding pharm where I get my nebulized glutathione is in Alabama and they ship it to me overnight on ice in a cooler b/c there is no pharm in my area that makes it.

The Gamma Globulin injections (SCIG) are for treating the underlying infections, or at least helping my body to fight them a little, as I cant take antibiotics yet. I also have an autoimmune profile and GG has been used for this in the past. I also used to catch things a lot so it was thought this would stop this from happening all the time and give my body a chance.

Thanks and I was just curious. I have autoimmune issue as well but GG has not been recommended for me and I suspect I would be allergic to it.

My IGG levels and subclass levels are normal

Same with me and I have had them tested multiple times throughout this illness and they have always been normal.

however I have had raised IGM for some time now, but I don't know why.

I have had raised IGM at times, too, but most recent test for it was normal. I have no idea what this means.

Hope you can get allergen free Ketotefin to see if this makes a difference!

 

[justy]

Fascinating! (Uh, can I say that without offense?)

Yes of course!

Do you mean that you do not have any compounding pharmacies in the UK or just not in your area?

None in the UK. Think I might ask KDM about this next week, he might have a suggestion. The only other thing in the ketotifen, apart from maize and cornstarch is magnesium stearate - which seems to be in everything.

Why am I so weird? I looked aty my other meds, and they also have some maize/cornstarch in, but don't cause problems. perhaps the amount in the Ketotifen has pushed me over the edge? who can know really?

 

[daisybell]

Yes of course!



None in the UK. Think I might ask KDM about this next week, he might have a suggestion. The only other thing in the ketotifen, apart from maize and cornstarch is magnesium stearate - which seems to be in everything.

Why am I so weird? I looked aty my other meds, and they also have some maize/cornstarch in, but don't cause problems. perhaps the amount in the Ketotifen has pushed me over the edge? who can know really?

There must be compounding pharmacies in the uk....

 

[Daffodil]

@justy i am wondering if you have been tested for monoclonal gammopathy. I read that raised IgM can be a sign of it. It is something that Dr. Peterson keeps an eye on because it can, much later on, lead to some kind of cancers...but he is the only doctor who tests for it, as far as I know. Perhaps you can see if KDM thinks it is worth testing for or if its even possible to have it tested over there....

Anyway, I am sure high IgM could mean a million other things...

 

[brenda]

There must be compounding pharmacies in the uk....

There is one in Scotland - somewhere.

 

[CantThink]

There must be compounding pharmacies in the uk....

http://specialist-pharmacy.com/

Possibly Dickson's in Scotland.

 

[justy]

http://specialist-pharmacy.com/

Possibly Dickson's in Scotland.

I have spoken to these people and they only seem to do bio identical hormones and creams for exzema - that is their speciality. I am hoping they might be able to point me somewhere, but honestly I am in touch with mast cell groups and they complain they cant get compounded meds in the UK.

 

[Gingergrrl]

I have spoken to these people and they only seem to do bio identical hormones and creams for exzema - that is their speciality. I am hoping they might be able to point me somewhere, but honestly I am in touch with mast cell groups and they complain they cant get compounded meds in the UK.

What a bummer and there are compounding pharmacies on practically every corner in LA where I live. Not are all of equal quality and not all carry products suitable for MCAS. But all (or most) ship nationwide so I get Ketetefin local but my glutathione comes from the east coast.

I wish there was some way that you could try the Ketotefin that I take (no fillers or additives and plain veggie capsule.) I might ask my pharm if they ship overseas but I suspect they don't.

I wonder why meds are not compounded in the UK? We even have compounding pharmacies for pet medications!

 

[brenda]

http://www.martindalepharma.co.uk/products/specials/

If not they might know of one.

 

[CantThink]

We even have compounding pharmacies for pet medications!

I get the impression that we have more of the vet compounders than human ones!

I wonder why meds are not compounded in the UK?

Possibly because we have a majority state healthcare system rather than privately funded. Even getting a different brand or presentation (e.g. liquid versus tablet) of a medication prescribed under the NHS is hard. Typically they want to offer and only carry the cheapest generic - regardless of whether it is tilled with things one is allergic to.

It seems the hospitals can get compounded medications either through their own compounding pharmacy in the hospital or through one of these pharmaceutical services providers that offer 'specials' - but these facilities appear to be offered to the medical professionals rather than being openly available to the public.

 

[CantThink]

There is this place which I read ships to people in Germany, so might ship to the UK too. I don't know if they make what you need:

http://www.mierlohout.nl/engels/thepharmacy/index.html

 

[Gingergrrl]

Possibly because we have a majority state healthcare system rather than privately funded. Even getting a different brand or presentation (e.g. liquid versus tablet) of a medication prescribed under the NHS is hard. Typically they want to offer and only carry the cheapest generic - regardless of whether it is tilled with things one is allergic to.

That makes sense and I keep forgetting this issue. In the U.S. the compounding pharmacies are private entities like any other business and have no connection to the government. It is very rare that an insurance company would reimburse you for compounded meds (b/c in their mind you could take any old version even if it caused you anaphylaxis- they don't care) but as a consumer, you can pick any pharmacy you choose and the market is large for these types of products.

 

[naoise]

@justy
Hi..I know this thread is old but I'm due to see dr.meirleir in April. I'm a vegan so was wondering what you ate before the breath tests as I know fruit/veg aren't allowed!
Also how is he with vegan diets..does he recommend them or will he ask me to eat meat? I do have a bad digestive system but nothing helps (tried meat for a year!) so figured I'd eat how I want then!
Thanks so much

 

[justy]

@justy
Hi..I know this thread is old but I'm due to see dr.meirleir in April. I'm a vegan so was wondering what you ate before the breath tests as I know fruit/veg aren't allowed!
Also how is he with vegan diets..does he recommend them or will he ask me to eat meat? I do have a bad digestive system but nothing helps (tried meat for a year!) so figured I'd eat how I want then!
Thanks so much

I am a vegetarian and ate normally - cant remember what the instructions were now. More important is the fasting period. He has a dietician that works with him that you can book in to see if you like, but he doesn't recommend specific diets for everyone.

For me he recommended a diet low in sugar, other than this we have not discussed diet. Good luck with the appointment.

 

[naoise]

@justy thank you for that! Does he explain what a diet low in sugar is? Is that no fruit?

 

[justy]

@justy thank you for that! Does he explain what a diet low in sugar is? Is that no fruit?

Oh, not sure...I only eat one piece a day...had bad candida in the past.