My Prof De Meirleir patient experience...

[Tony]

Good on you Athene! Lovely thing to do... And thanks for appreciating my health journey here folks. When Cort first mentioned the possibility of adding this gut etc section I thought it would be a very appropriate place on the net to tell it as it unfolds, whether it be good, bad or indifferent. So far it's been all three but mostly, very slowly on the up.
Now, if we can just get GcMAF into Oz...! (It's being worked on...)

 

[YILMAZ]

H2S

''did you do the H2S test? i just got my kit and can't do the test for 1-2 wks because i have to wait for the antibiotics to get out of my system.''

Does it really necessary that you should wait for a few weeks to get antibiotics out of the system, before performing the test? I did the test 1 week after stopping after antibiotics and result seems to be strong positive.(colour changed to light brown immediately and to dark purple at 3. minute) Does it indicate a sterong reaction( I didn't observe any green colour like shown on the scheme in the box). I performed the test immediately after taking kit out of freezer, is that also o.k or should I had to wait for the kit to get warmer?

 

[Tony]

Hi Yilmaz, Have a read of this thread: http://forums.phoenixrising.me/showthread.php?8828-Question-about-de-Meirleir-s-H2S-test

You should wait until the kit is defrosted. If the thread doesn't answer all your questions you can get in touch with the lab who make it and they will help you out.

Cheers...

 

[YILMAZ]

H2S

Hii Tony, thank you very much for the response, the thread was really helpfull. I think I have to repeat the test. But test came to me in a normal package with no icepack in. I live in Turkey and ?t should have been shipped 4-5 days ago,at least. So I am not confident that kit was good enough to be used. I wrote an e-mail to lab. but they didn't give any response yet. What about your packages, were they always shipped with a icepack in?

regards

 

[Tony]

Hi Yilmaz, glad it was useful for you. It was quite some time back when I did that test. I got it from my doc here in Australia but I think it would have been sent to me with an icepack.

 

[Sammy]

Yeah thanks Tony your thread is realy helpfull.

Yilmaz, they should ship with an ice pack, did my H2S three or so months ago and it was shipped express with an ice pack and a sticker on the pack telling the post office staff to please refridgerate... However the dim minded PO staff did not place it in the fridge so.. after calling staff at CFS Discovery they advised as long as the fluid was still "straw yellow" it should be fine.

I am a little confused as the test(Neuro Toxic Metabolite) result was a "strong positive" ie it turned Black! However my BioScreen Fecal did not return high in Prevotella or any of the other nasties including Yeast's! Just a 0% Lacto and a very high Bifido count.

Am very eager to make sense of my results with Dr Lum in a few months...

 

[ukme]

A couple of questions about KDM treatment

Is anyone on here concerned about the never ending cycles of antibiotics? We are on to our 3rd lot and I feel concerned that it has the potential to do more (long term) harm than good. I am dealing with a skinny 15 year old here..

Also, can anyone tell me why the results of tests vary so wildly? You take abx based on your test results and then when you get the next set of results some of them are even worse than before! For example, last test showed normal escherichia bacteria @ 72% (70-90% range), latest test now has it at 4% (however on plus side high strep and staph is now gone). IL8 was 36 (0-15) and is now 322.

I am going to discuss this when I get an opportunity to speak to KDM but in the meantime has anyone got any answers?

 

[aquariusgirl]

I have not seen KDM yet, but this aspect of his treatment concerns me, partly because studies show that it takes very few courses of abx to cause long-term changes to the gut biome and partly because i've spoken to some ppl who seem to have failed on this txt.


I guess it remains to be seen if abx + gcmaf turn that around.

Re yr results.. what tests are you using to track? You really need a test that looks at DNA to get a good sense of what's going on..

My ID doc told me that the WPI is finding IL8 tracks with XMRV. but other than that he doesn't put much stock in cytokine testing...says no one knows how to intepret the fluctuating numbers....

 

[maryb]

The IL8 result is very unusual I would say, there's fluctuating and then theres WTH.......

 

[ukme]

My ID doc told me that the WPI is finding IL8 tracks with XMRV. but other than that he doesn't put much stock in cytokine testing...says no one knows how to intepret the fluctuating numbers....

So does your doc mean that numbers can fluctuate really wildly? And can you tell me more about the DNA test I have never heard of it. Thanks

 

[Tony]

Don't think I've got any answers here either. All I know is I feel better and am a bit more able nowadays.

I did get to the local golf course and managed to warm up and play 4 holes...which was all good fun... But that was too much and it took me a several days to recover, at least. But the sun was shining and it was altogether a beautiful day! I've not been back since but hope to hit a few balls sometime in better weather and maybe just play 2 holes. Or perhaps go back to square one like I did several years ago and just hit a few balls in the nets til I get used to all that muscle work again. I could do that...

Since the overall treatment by Dr DeMeirleir I feel significantly less sick with a little more energy. I go out much more often at nite, loving the local music scene. That used to be a rarity. I confidently plan ahead buying tix in advance. I can stand for longer, do more things, read more books too...

Overall it's about a 5% improvement which doesn't sound like much, but when I was operating at 20-30% and now at 25-35% I really notice it. And so do my family and friends...
I feel much less sickly, pretty much most of the time. That alone is a very fine thing...

Other results for me are that both the culture and serology for XMRV came back negative.
My c4a has gone through the roof from 797 in Sept '09 to 8279 in June 2011.

 

[Sushi]

Tony have you been able to get GcMAF in Australia yet?

Best wishes from another De Meirleir patient.

Sushi

 

[Tony]

Hi Sushi, No, not yet. I spoke with my doc about a month back, still working on it...

I may just be a touch crazy, but I'm not entirely sure I want to try it just now. This is quite a turn around as I was ready to go asap. I'm enjoying life more, being more able, seeing much more live music etc... So a part of me wants that for at least a little while, without the "step backward to go forward process" all over again. That trip started 18 months ago for me...

By the time it gets here though and it gets organised I just might have had enough of a healthier holiday and decide I do want it asap!...

 

[Sushi]

Hi Sushi, No, not yet. I spoke with my doc about a month back, still working on it...

Hi Tony,

I understand! GcMAF can give you a bumpy ride, though they are learning much more about how to dose it for different individuals. I am one of the ones who has done well on it and have more stamina and energy.

It is hard to get into the US too. Have you discussed with other patients having someone go to Brussels to see De Meirleir and bring a supply of GcMAF back with them? I brought mine back to the States in my luggage, and a few others have done the same.

Best wishes,
Sushi

 

[Tony]

Not a bad idea Sushi. I could do with an expenses paid holiday to Europe , but the trip would be pretty rough on me... I don't know what customs here would make of it either.

My doc seems optimistic that the GcMAF isn't far off.

 

[Sammy]

Yeah thanks Tony your thread is realy helpfull.

Yilmaz, they should ship with an ice pack, did my H2S three or so months ago and it was shipped express with an ice pack and a sticker on the pack telling the post office staff to please refridgerate... However the dim minded PO staff did not place it in the fridge so.. after calling staff at CFS Discovery they advised as long as the fluid was still "straw yellow" it should be fine.

I am a little confused as the test(Neuro Toxic Metabolite) result was a "strong positive" ie it turned Black! However my BioScreen Fecal did not return high in Prevotella or any of the other nasties including Yeast's! Just a 0% Lacto and a very high Bifido count.

Am very eager to make sense of my results with Dr Lum in a few months...

Apparently the VERY HIGH amount of creon 40,000iu caps I was take-ing(30plus/day)may have affected the Bioscreen fecal result.

Have to retest in a month(hope thats long enough) - creon free, have also stopped ascorbic acid, folic acid as well just incase.

 

[Sammy]

A couple of questions about KDM treatment

Is anyone on here concerned about the never ending cycles of antibiotics? We are on to our 3rd lot and I feel concerned that it has the potential to do more (long term) harm than good. I am dealing with a skinny 15 year old here..

Also, can anyone tell me why the results of tests vary so wildly? You take abx based on your test results and then when you get the next set of results some of them are even worse than before! For example, last test showed normal escherichia bacteria @ 72% (70-90% range), latest test now has it at 4% (however on plus side high strep and staph is now gone). IL8 was 36 (0-15) and is now 322.
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Have no ideas here either. The GI microflora is still a large mystery to me, dispite all the reading I do on the subject.

Athough after years of Keflex, Rifaximin, Vancomicin, cefaclor prescribed by various Gastroenterologists with no probiotic implementation... I seem to have suffered no side effects(that i can see) and have escaped the dreaded C.Diff infection that some get after repeated AB use.

Sammy

 

[Sammy]

Not a bad idea Sushi. I could do with an expenses paid holiday to Europe , but the trip would be pretty rough on me... I don't know what customs here would make of it either.

My doc seems optimistic that the GcMAF isn't far off.

Hi Tony

1st, thanks for ur advice via Notcrazy.net re CFS Discovery

2nd point, how long did Dr L/Prof Kenny de Meirleir say it will take for GcMAF to become available?

Sammy

 

[keenly]

What is the exact p rotocol

2 weeks on antibiotics; 2 weeks on probiotics

is that right?

Dr Cheney says one should not use anything that effects p450enzymes.

which antibiotics don't and are safe?

 

[Sushi]

What is the exact protocol--2 weeks on antibiotics; 2 weeks on probiotics is that right?
Dr Cheney says one should not use anything that effects p450enzymes.
which antibiotics don't and are safe?

Hi Keenly,

Every patient is treated as an individual according to testing and symptoms. There is no "exact protocol" that applies to everyone. Some are not prescribed antibiotics at all--depending on test results. No one is given the same protocol as anyone else as our test results and symptoms are all very different. However, I have never heard of anyone being prescribed 2 weeks on antibiotics and two weeks on probiotics.

An antibiotic that is "safe" for some, may not be for others. Sorry I can't give you a more explicit answer! This doctor treats only after very comprehensive testing and only prescribes what is appropriate for an individual patient.

Best wishes,
Sushi