Low dose immunotherapy/provocation neutralisation

Jenny

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Anyone tried this? It's my latest treatment. (Probably doomed to failure like most of the rest.)

It involves repeated administration of possible allergens until 'neutralising doses' (doses that give no reaction) is reached. These doses are then used to prepare a treatment vaccine.

I know I'm sensitive to nickel so I've started with that.

Jenny
 

maryb

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Jenny I had this and it caused me to become sensitive to so many others things that I was okay with before, would even go so far to say i had minimal MCS and it accelerated to severe following this treatmebt. Testing is
very expensive and you have to take the vaccines forever? unless a cure for the illness is found. I also know that it has helped a fair number of people too so I suppose try it and see, hope you are in that group.
 

ukxmrv

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Yes, I tried this in the late 80's. Cannot remember what was tested / treated apart from foods. There were other things but I just can't remember. No change in major ME symptoms due to this.
 

Jenny

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Thanks for your replies.

Maryb - how awful that your MCS got worse! I think the idea is that you take the vaccines for a few months to take the load off your body and this should help you improve.

I've been tested for nickel, wheat, oats, cow's milk, sodium metabisulphate and sodium benzoate so far. I was most sensitive to milk (as I expected) and sodium benzoate. I'll probably just do a few more and then call it a day. Someone I was sitting next to today has been tested for 80 foods so far!

Jenny
 

maryb

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Jenny - I was told after by a doctor that the treatment had hyper-sensitised me, it happens when they don't get the end points exactly right.
Even the vaccine used to give me palpitations within a few seconds of using it, it really was a terrible experience, took me a few years to get over some sensitivities eg. pollen but still left with many others.
I did try it a couple of times as they insisted it would work but I guess it just wasn't for me.
Really hope it helps you I know you've tried many unsuccessful things like me.
 

girlinthesnow

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This kind of hyper-sensitising happened to me but after a slightly different treatment, enzyme potentiated de-sensitization (EPD). I became intolerant of many more foods and developed a 'true allergy' to several as well. I also started having migraines for the first time ever.

I lost a few foods after the first treatment and was told this could happen but I would improve. I had a second treatment and was markedly worse. I was talked into a third treatment but that was it, my husband was adamant that I have no more of these. Afterwards I read a leaflet by the ME Association saying they didn't recommend this treatment. This was in 1996 to 1998, I'm no better now.
 

Jenny

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Anyone tried this? It's my latest treatment. (Probably doomed to failure like most of the rest.)

It involves repeated administration of possible allergens until 'neutralising doses' (doses that give no reaction) is reached. These doses are then used to prepare a treatment vaccine.

I know I'm sensitive to nickel so I've started with that.

Jenny
Just reporting back on this. I did the immunotherapy at the Breakspear for 6 months starting last March. The vaccine included about 20 foods and moulds that I was supposed to be sensitive too.

I had a good spell between March and August (this good period had started when I started the treatment).

But in late August I started a gradual decline into my latest bed-bound relapse. All the old symptoms, nothing's changed.

I stopped the injections 3 weeks ago.

I found it difficult to believe I ever had allergies or food sensitivities as I've never noticed any exacerbation of symptoms after eating any particular foods and I've tried lots of elimination diets to no effect.

So I was right - another failed treatment and over 1000 wasted.

Jenny
 

xrunner

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Like others I tried this over three years ago for about four weeks . It triggered MCS-like symptoms. It took me several months to revert back to normal.
Some people are helped as it kind modulates/calms the immune system and relaxes the nervous system. In me it had the opposite effect.
Personally, I believe it's more effective focusing efforts on treatments that are more objectively documented to produce improvements.
All the best.
 

ukxmrv

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Really sorry to hear that Jenny.

The Breakspear seems to help some people but at enormous cost as they move through all the different treatments on offer. No one I know recently has been cured but them although I know of several helped and one woman I met years ago said she was cured but spent 10,000 in total trying different things over years.