Interesting appointed

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Hi,
I had an interesting appt with a German ME doc. He knows all my lab results, the neuroinflammation and the coxsackie.
The weak immune system.

He wanted to recheck EBV (even I did it twice and the last result is from this month?!). He didn't say anything about my coxsackie b4 infection (1:480).

Question he asked were which laundry detergent I use (I told him and that I never had a skin reaction). Then I asked him about treatment ideas. He said he'd give me testosterone (though my levels are right in the median) and Ozone IV and UVB therapy. This would be antiviral too. I should not ask for studies.

I feel a bit like after an appt with a homeopathic. Has did anyone try these?

Thanks,

Martin
 

Judee

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He sounds like an environmental doctor.

I do think it's important for people with ME to lighten their environmental load even if you do not think you have MCS (multiple chemical sensitivities). It's very surprising how just being around that stuff can tire me more but of course, I have MCS.

However, when I was diagnosed with it, I had a dresser full of perfumes and did not realize they were making me sicker.

Anyway, I think he should have been more concerned with those titers.

Also did he seem overly confident that he could make you well? We discussed this recently as a possible red flag on new doctors.

You could still try his protocols if you wanted however, I would not be overly confident in any promises. You should also find out how much its going to cost ahead of time.
 
Messages
2,206
Likes
7,095
He sounds like an environmental doctor.

I do think it's important for people with ME to lighten their environmental load even if you do not think you have MCS (multiple chemical sensitivities). It's very surprising how just being around that stuff can tire me more but of course, I have MCS.

However, when I was diagnosed with it, I had a dresser full of perfumes and did not realize they were making me sicker.

Anyway, I think he should have been more concerned with those titers.

Also did he seem overly confident that he could make you well? We discussed this recently as a possible red flag on new doctors.

You could still try his protocols if you wanted however, I would not be overly confident in any promises. You should also find out how much its going to cost ahead of time.
No he didn't say it would make me better 100% but that it helps many.
I don't know. When I was on Abilify I used perfumes daily and felt good.
It seems to me that my GP knows more about ME than he does
 

wabi-sabi

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Sounds like
1) Assuming that a viral infection is your main problem.. And with ME, who really knows?!
2) Is suggesting ineffective treatment for said viral infection.
3) Wants to treat something that isn't a problem: your testosterone level

4 Adds up to illogical waste of time and money- but call me cynical, jaded, and cognitively messed up!
 

Pearshaped

Senior Member
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Hi,
I had an interesting appt with a German ME doc. He knows all my lab results, the neuroinflammation and the coxsackie.
The weak immune system.
ugh, doesnt sound as promising, some Docs claim to know about ME when in fact they dont..

He wanted to recheck EBV (even I did it twice and the last result is from this month?!). He didn't say anything about my coxsackie b4 infection (1:480).

Question he asked were which laundry detergent I use (I told him and that I never had a skin reaction). Then I asked him about treatment ideas. He said he'd give me testosterone (though my levels are right in the median) and Ozone IV and UVB therapy. This would be antiviral too. I should not ask for studies.

I feel a bit like after an appt with a homeopathic. Has did anyone try these?

Thanks,

Martin