Interesting appointed

[Martin aka paused||M.E.]

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

 

[Alvin2]

I feel a bit like after an appt with a homeopathic.

Sounds about right.
I also have dealt with naturpaths, they are cut form the same cloth, candida, WiFi, homeopathy, vitamins and herbs.

 

[andyguitar]

I had an interesting appt with a German ME doc.

Have they had any sucess in treating me/cfs?

 

[Judee]

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.

 

[Martin aka paused||M.E.]

Have they had any sucess in treating me/cfs?

He says yes, but who knows. I'm having a hard time finding a good one.

 

[Martin aka paused||M.E.]

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

 

[dave11]

laundry detergent powder absorbed into clothing or sheets can in some people trigger an allergic reaction, such as sneezing or respiratory problems

 

[Martin aka paused||M.E.]

laundry detergent powder absorbed into clothing or sheets can in some people trigger an allergic reaction, such as sneezing or respiratory problems

Don't have it

 

[wabi-sabi]

He said he'd give me testosterone (though my levels are right in the median) and Ozone IV and UVB therapy.

This doesn't sound like it would be helpful to me. What's his rationale?

 

[Martin aka paused||M.E.]

This doesn't sound like it would be helpful to me. What's his rationale?

I didn't ask bc he was talking talking talking... I had problems making notes already

 

[wabi-sabi]

If it were me, I would not go for this treatment plan.

 

[wabi-sabi]

See article link: lack of efficacy of ozone therapy in HIV infection
https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(14)65260-5/pdf

Doesn't sound like an effective antiviral treatment.

 

[wabi-sabi]

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!

 

[Martin aka paused||M.E.]

See article link: lack of efficacy of ozone therapy in HIV infection
https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(14)65260-5/pdf

Doesn't sound like an effective antiviral treatment.

That's why I said: it felt like an appointment with a homeopathic guy...

 

[Pearshaped]

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

 

[Pearshaped]

Doesnt sound very promising - some docs make a fortune wirh treati g „chronic fatigued ppl“ but habe in fact no clue about ME.

 

[Martin aka paused||M.E.]

Doesnt sound very promising - some docs make a fortune wirh treati g „chronic fatigued ppl“ but habe in fact no clue about ME.

That was my impression.