What does these KDM tests mean?

[LIJ]

Hello! I have a wife who is severly ill in ME/CFS to a point that we now fear for her life. She is now totally bedbound. She has been to several doctors but all treatments thats been suggested either hasn't worked or been impossible to carry out due to side effects. Among others we've been in contact with Kenny de Meirleir and he has carried out the attached tests. He has suggested hydroxocobalamin, vitamin c, LDN, gammagloubulin and lamictal. None of these routes has been possible due to side effects.

I understand that an internet forum cant replace a real doctor, but as a second opinion, whats your take on these results? Is there something strange or are they typical ME/CFS-results? Any insights would be appreciated.

 

[roxie60]

I'm sorry to hear you wif is not well and I commend you for trying to help her, I know it is frustrating when someone you care about is ill and it is so hard to get answers.

I'm not a Dr but here are my comments, please take them in the spirit of wanting to help. Second it appears you are working with a Dr that many here respect (at least I think so) and many have seen so those folks may be better position to comment.

Is this all of the test results? First it is good that she appears to not be allergic/sensitive to any of the foods tested. That migh be a function of how long she has been sick. Many of us who have been dealing with this for years end up having many allergies/sensitivities to food (primarily thought to be related to GI issues). That said nothing is jumping out on the GI test (maybe someone can help me out here but I do not see heliobacter pylori on the list, that surprises me). It does appear Dysbiosis might be indicated almost so she may have leaky gut and that is usually the first palce Drs try to treat to get that under control.

The VDR-BSM B/b is indicating hetero for that gene which can mean there is a possibility of methylation cycle issues (has she had her genetics run yet?).

To be honest I'm not seeing anything jumping out on this test strongly indicating any issue but I am not familiar with a couple of those sections so wait for others to chime in. My hope is KDM has other tests ordered. There is a very good thread here that talks about various tests that most of us believe are a bare minimum for trying to figure out what is wrong. I understand the sense of urgency and I also understand it seems the medical field does not share that sense of urgency. I will go find a link to that other thread and hopefully you will be comforted knowing KDM is ordering some of those tests to help get answers.

 

[roxie60]

Here is the thread http://forums.phoenixrising.me/inde...-point-for-m-e-tests.24583/page-3#post-377025

There are many other threads here on testing, goto the main Forums section and look for the subforum on testing.

 

[snowathlete]

So sorry to hear about your wife's health. I really hope she improves. I am a patient of KDMs too, since January this year and I think he's a great doctor. Very experienced and knowledgable. I know he sees some other very sick patients in Norway and elsewhere, and I think he has managed to help them improve, so where possible I would take his advice.

I had the same food panel test and had very different results. Most of mine were high and now I can't have gluten, dairy, eggs etc. I don't know enough about these tests to know how normal the results are but I suspect it depends and your wife's results may well be totally normal for someone with such a severe state of illness.

With your wife being so ill, it may well be that her immune system isn't strong enough to react to foods, which might perhaps explain low numbers of antibodies against them, or maybe she just doesn't have food allergies?

A bunch of my other tests were very out of range, cytokines and so on, and that is not uncommon, but also it varies from one patient to another depending on what they are infected with, their severity, state of disease, age, and other factors.

I am on treatment and have had side effects, but then it sounds like I didn't start out as unwell as your wife, so I understand it might be much more difficult for your wife to tollerate, even impossible perhaps. All I can suggest is to take KDMs advice if and where it is possible, and if it is impossible then ask him what to do.

Good luck and I really hope your wife gets well.

 

[LIJ]

First it is good that she appears to not be allergic/sensitive to any of the foods tested

Thanks for your comments! When it comes to allergies she has a lot quite severe allergies. The low scores on the allergy test KDM explained was due to her immune system being completly deregulated. Which makes sense because she reacts to quite a few of the food stuffs tested. In fact her ME started after she had been trough a treatment against her grass allergy so it is probably something wrong with her immune system causing her ME.

When it comes to further testing, KDM has unfortunaly been reluctant to continue due to the fact that my wife is so ill that she can't travel to see him and that the health authorities in our country is a bit suspicious toward that kind of treatment "over the phone". So further testing is not likely