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FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

Jenny

Senior Member
Messages
1,388
Location
Dorset
jonnyboy - I had similar autonomic testing done at the Breakspear. They insisted I had allergies. Like you I've no evidence of these. I've tried all sorts of exclusion diets, to no effect.

They strongly recommended their allergy neutralisation treatment but I did 6 months of this, at some expense, and felt no different at all.

Jenny
 
Messages
41
Location
Kent, UK
jonnyboy - I had similar autonomic testing done at the Breakspear. They insisted I had allergies. Like you I've no evidence of these. I've tried all sorts of exclusion diets, to no effect.

They strongly recommended their allergy neutralisation treatment but I did 6 months of this, at some expense, and felt no different at all.

Thats actually very interesting Jenny, since ive also had the immunotherapy treatment for about 8 months now, with no beneficial effect whatsoever. Had been thinking of stopping it for some time. The whole process never made any sense to me whatsover with the end points etc. I never got a reaction to anything during the whole testing process either. The fact that my problems are caused by allergies, yet im unaware of these allergies......seems a huge stretch to me. Couldn't understand why they wouldnt try an elimination diet first. Though obviously no financial benefit for them in trying that. I think they have been right on the money in terms of the autonomic report, it does fit my symptoms to a tee. The treatment i think is questionable thou.

Since I've had the eds 3 diagnosis, I'm wondering if all my symptoms have come about thru some sort of failure of control over my sympathetic nervous system. Its seems to be stuck in overdrive. Probably pointless, but ive tried relaxation stuff and made no difference whatsoever. I had a sudden onset of my illness 2 years ago, the only thing I'm fairly sure of is that it wasn't viral. Had no viral symptoms other than a sore throat and aches for the first 2 weeks of being ill (at the time i thought i had flu), unless it was a hit and run virus.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Thats actually very interesting Jenny, since ive also had the immunotherapy treatment for about 8 months now, with no beneficial effect whatsoever. Had been thinking of stopping it for some time. The whole process never made any sense to me whatsover with the end points etc. I never got a reaction to anything during the whole testing process either. The fact that my problems are caused by allergies, yet im unaware of these allergies......seems a huge stretch to me. Couldn't understand why they wouldnt try an elimination diet first. Though obviously no financial benefit for them in trying that. I think they have been right on the money in terms of the autonomic report, it does fit my symptoms to a tee. The treatment i think is questionable thou.

Since I've had the eds 3 diagnosis, I'm wondering if all my symptoms have come about thru some sort of failure of control over my sympathetic nervous system. Its seems to be stuck in overdrive. Probably pointless, but ive tried relaxation stuff and made no difference whatsoever. I had a sudden onset of my illness 2 years ago, the only thing I'm fairly sure of is that it wasn't viral. Had no viral symptoms other than a sore throat and aches for the first 2 weeks of being ill (at the time i thought i had flu), unless it was a hit and run virus.

The sympathetic overactivity problem is what I have too, most of the time. I do a lot of meditation, which does help for an hour or so, but then the 'wired' feeling returns. I do think one of the keys to improvement is to get the system to calm down, but how?

Jenny
 

Sushi

Moderation Resource Albuquerque
Messages
19,946
Location
Albuquerque
The sympathetic overactivity problem is what I have too, most of the time. I do a lot of meditation, which does help for an hour or so, but then the 'wired' feeling returns. I do think one of the keys to improvement is to get the system to calm down, but how?

Jenny

I don't think that the roots are in the autonomic nervous system, but that the ANS has been affected or damaged by other conditions. In depth testing will show abnormalities in other areas. The ANS seems to improve its functioning when deeper causes are treated.

Sushi
 

voner

Senior Member
Messages
592
sushi,

What are some of those possible deeper causes and possible treatment?
 

Sushi

Moderation Resource Albuquerque
Messages
19,946
Location
Albuquerque
sushi,

What are some of those possible deeper causes and possible treatment?

That is complicated! And probably pretty individual--which is why testing is helpful. All our systems are inter-related--brain, nervous system, immune system, gut, etc., and thus affect each other.

Plus the many possible sources of damage--viruses, infections, unknown pathogens, toxins, heavy metals, injuries and traumas...on and on. I believe there is a lot of research going on to try to unravel such questions.

But, in the meantime we can treat what is found in us and many get a measure of improvement this way. Dealin with all of the above has helped different groups of patients.

Sushi
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
I don't think that the roots are in the autonomic nervous system, but that the ANS has been affected or damaged by other conditions. In depth testing will show abnormalities in other areas. The ANS seems to improve its functioning when deeper causes are treated.

Sushi

I agree, but I think one can become more functional when in a more relaxed state.

Jenny
 
Messages
47
Voner,

My post-viral dysbiosis was so bad, that it mimicked almost all of the hallmark cases of CFS. I got incredibly lucky, found a forum that dealt specifically with gut, and a member there said to try some pro bacteria. Bought some yogurt, and felt 50 percent better. After a week, I was back to normal. Who knows what would have happened if x number of months went by.

So did I have CFS? Technically, no. But all of my symptoms fit like a glove. I guess the point is, at least we are all in the right direction by staying in communication.
 
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