I am booked in to see Prof. de Meirleir in January

[adreno]

Still, it is a lot of money.
At least I will get lots of bonus points on my credit card...

There's nothing more important to spend money on than your health.

 

[Sushi]

snowathlete said: ↑

Still, it is a lot of money. ​

At least I will get lots of bonus points on my credit card...​

​

My credit card points actually paid for my airfare!​

Sushi

 

[SanDiego#1]

trains, eurostar and hotels all booked. I feel shattered having spent most of the day looking at options and arranging everything.

Snow- Please let me know how all of that goes. I may wind up there myself.Not sure I could do the trip though.

San Diego

 

[roxie60]

Congratulations Snowathlete and Justy, I am happy for both of you and praying you get some answers and a plan that gets you some improvement if not complete recovery!!!! Let us know what you think and how things progress. Nothing like first hand experience and reports.

 

[SanDiego#1]

Congratulations Snowathlete and Justy, I am happy for both of you and praying you get some answers and a plan that gets you some improvement if not complete recovery!!!! Let us know what you think and how things progress. Nothing like first hand experience and reports.

Snow-
What Controversy is everyone talking about Dr. M being involved in?Anyway- The best of luck and I too hope it
helps in recovery.

San Diego

 

[snowathlete]

Snow-
What Controversy is everyone talking about Dr. M being involved in?Anyway- The best of luck and I too hope it
helps in recovery.

San Diego

The only thing that I know about is something on the net from The National CFIDS Foundation, Inc. (NCF) who seem to have had some beef about KDM and his prescription of stuff like Ampligen.If you look on the net you will easily find it. I dont think there is much to it really, and to me, their statements against him seemed overly aggresive.

 

[Sushi]

SanDiego#1

Snowathlete is right--it was an accusation by the National CFIDS Foundation, some years ago, about not publishing his significant research in a peer reviewed journal and thus making it available to others. Thing is, you can't just knock on the door of a journal and say, "Please publish my research--and bingo, they will publish it." He would have loved to get it published but that is up to the journal, not the author.

There is a lot of significant ME research sitting on the desks or in the files of journals -- we would all love to see it published, but journals are businesses and publish what they think will sell.

Sushi

 

[SanDiego#1]

SanDiego#1

Snowathlete is right--it was an accusation by the National CFIDS Foundation, some years ago, about not publishing his significant research in a peer reviewed journal and thus making it available to others. Thing is, you can't just knock on the door of a journal and say, "Please publish my research--and bingo, they will publish it." He would have loved to get it published but that is up to the journal, not the author.

There is a lot of significant ME research sitting on the desks or in the files of journals -- we would all love to see it published, but journals are businesses and publish what they think will sell.

Sushi

Sushi-
I have heard nothing but good things about him from patients.If he helps anyone to rebound or improve,
I am for it. Just the fact that he is trying and not looking for publicity means something also.
Thanks for your insight.Also alot of Conventional Medical people may not want it published.

San Diego.

 

[GcMAF Australia]

best wishes to you's

 

[taniaaust1]

When's the big day?

 

[snowathlete]

Its only a few weeks away now. I've been reading my medical history notes in preperation for my appointment. I had mono quite bad when I was 14, and after that I was always ill with something until I was an adult and even then never felt right. My doc wrote "catches every bug going" in my notes and he wrote to my school as I was so frequently absent.

"This is to confirm that [my name] contracted glandular fever in September 1995 and since that time has tended to get very tired and be somewhat suseptible to intercurrent infections. This is something which on occation does affect people after glandular fever."

Intercurrent isn't a word that I come across much, and although I could work out the jist of it, I looked it up: occurring during and modifying the course of another disease.

Clearly it did something to my immune system back then.

 

[snowathlete]

Also, another entry shows that i injured my left middle finger when i was about 13 and went to hospital for an x-ray. It wasnt broken. But for as long as i can remember that finger clicks and is always stiff. I wonder if the two are linked!

 

[GcMAF Australia]

it may be that there is some infection causing inflammation. This could be the virus from mono (EBV).
But hopefully you can get some relief from this.

 

[SanDiego#1]

it may be that there is some infection causing inflammation. This could be the virus from mono (EBV).
But hopefully you can get some relief from this.

GcMAF

Rather than my having to start another thread-Is anyone on this site taking Immune Globulin????

San Diego

 

[Sushi]

GcMAF

Rather than my having to start another thread-Is anyone on this site taking Immune Globulin????

San Diego

Few people will see your question here. Use the google search function (at the end of the forum listings) and find one of the other threads on this subject and add your question there. You should get more response.

Sushi

 

[SanDiego#1]

Few people will see your question here. Use the google search function (at the end of the forum listings) and find one of the other threads on this subject and add your question there. You should get more response.

Sushi

Sushi- As always- Thanks!!!

SD

 

[snowathlete]

So, as part of my preperations I am thinking about what tests I want performed. I will of course take KDMs advise and cost may well mean I have to rationalize my list a bit more than I would like, but I have creating three lists to start off the process. The first list is of tests that I know I probably will ask for, though I may need some help from you guys on what specific tests to ask for.
The second list is of tests that I dont know much about but which might be worth getting, but again I could do with some input from forum members.
And the third list is of tests that I have heard about related to ME but which I probably dont think will be beneficial - but I am open to being convinced otherwise. And, I'd also be interested to hear of any other tests that people think I should get that arent on any of my lists!

Probable Tests
1. EBV (HHV4)
- Igg (think I’ve already had this and positive, need to check)
- Igm
2. HHV6 (if not had already and negative - need to check my existing results)
- Igg
- Igm
3. CMV (if not had already ruled out, need to check)
- Igg (probably don’t have it, so no point in running other tests unless this comes back positive)
4. Lymphocyte Subsets (T-cells including CD8+, B-cells, NK-cells)
5. NK Cell activation (PERFORIN EXPRESSION ASSAY)
6. NK Cell Subset
7. Stool test
8. Bartonella
9. Lyme (Borrelia burgdorferi). I’ve already had a basic NHS test, but would like something a bit more definitive.

Tests that might be worth getting but which I don’t know much about:
1. Enteroviruses (Echoviruses, Coxsackie A, B and Cpn). Maybe these would be worth testing but I don’t know much about them.
2. Anaplasma phagocytophila (maybe this would be worth testing but I'm not sure)
3. Chlamydia pneumonia, CHLAMYDIA TRACHOMATIS (maybe worth testing but I don’t know much about them)

Tests I Probably Won’t have
1. ELASTASE EXPRESSION ASSAY (inflammation)
2. Ribonuclease L (RNase L) cleavage assay
3. Soluble CD14 (interesting perhaps, most useful if you have Lyme, but also a marker for Crohns, so interesting for me as mum had it, not that I suspect I have it)
4. HHV7 - I don’t know much about it but understand it can perhaps reactivate EBV and HHV6 – it is apparently very common, but tests are relatively new and reliability is not yet proven.
5. TOTAL ANTIOXIDANT CAPACITY
6. Parvovirus B19
7. HSV 1 (probably have it, but not sure that knowing will give me any benefit)
8. Babesia microti (If I had this, wouldn’t I already know or at least suspect?)
9. Mycoplasma Pneumoniae (again, wouldn’t I have had symptoms?)
10. Mycoplasma Hominis
11. Anti-streptolysin O for streptolysin O
12. Rickettsia, Bartonella, other Borrelia species, and Ehrlichia chaffeensis
13. Ehrlichia chaffeensis (is it only transmitted by Amblyomma americanum ticks that occur, presumably, only in the US?)

 

[Sushi]

snowathlete

Just a note:

1. ELASTASE EXPRESSION ASSAY (inflammation)
3. Soluble CD14

These two tests are useful markers. They were both high for me before treatment and normalized after a year. You might want to consider them. The results of these tests can also be relevant to the types of treatment prescribed.

Best,
Sushi

 

[snowathlete]

Thanks Sushi, thats handy to know. I'll upgrade those two in that case.

 

[taniaaust1]

9. Mycoplasma Pneumoniae (again, wouldn’t I have had symptoms?)

ive only been tested for that one by a specialist cause after seeing me as a patient for a few years, he noticed that I sometimes have a cough if Im a little run down.
.....

rickettsia testing.. coexisting rickettsia seems to be extremely high in ME/CFS people but for some reason its something not many seem to know or is being paid much attention to but which should probably be due to how many of us have it. My CFS specialist (in Sth Australia was having his ME/CFS patients tested for it (he sent away blood of hundreds of his CFS patients for testing for it throu one of our common blood labs) and found that around 50% of his patients came back with postive (coexisting?) rickettsia and improved some on treating it. I know Rickettsia was also studied a lot in ME/CFS by a ME/CFS specialist in Sth Africa too (Dr Jadin?)... so I dont know if this issue is a world wide one or just more in some countries. It may not have been looked at yet in other countries. Its one of those areas which needs far more study into. I myself thou was one of the half of us (in Sth Aust) who dont test positive to Rickettsia. Not Rickettsia isnt at all common in my country, I'd never heard of anyone having it before so why did 50% of those with ME/CFS here have it? but they did.

I suggest to look up to see if it occurs in your country.

. Enteroviruses (Echoviruses, Coxsackie A, B and Cpn). Maybe these would be worth testing but I don’t know much about them.

isnt that what KDM is right into?? (or maybe Im confusing him with another well known ME/CFS specialist.