In Belgium to see KDM

[rlc]

Hi Szeen, I‘ve read through your posts and in my opinion you do not seem to have the symptoms of ME. But you do have symptoms that suggest your doctors have failed to find the right diagnosis.

Because it is a rare symptom burning feet is quite likely to be useful in finding the cause of your problems. Conditions that can cause burning feet are listed here http://www.rightdiagnosis.com/symptoms/burning_feet/causes.htm and http://en.diagnosispro.com/differential_diagnosis-for/burning-feet/24711-154.html the most common causes are Diabetes, B12, Folic acid, B6 and niacin deficiencies. But there are lots of rarer conditions that may have to be investigated. When you say you are red like a tomato most days is this on your face or allover? If it is on your face then lupus should be checked for.

Possible causes of bladder burning sensation are listed here http://www.rightdiagnosis.com/symptoms/bladder_burning_sensation/causes.htm

Rivortril is also called clonazepam, and klonopin its side effects are listed here http://www.drugs.com/sfx/clonazepam-side-effects.html it can also have bad effects when taken by people who have the diseases that are listed on this page http://www.news-medical.net/drugs/Rivotril.aspx as you have yet to be diagnosed my opinion is that it is risky to take any medication until you have a real diagnosis. It is physically addictive in the sense that your body can become dependent on it, and it can have very serious withdrawal symptoms. Its half life is typically 30-40 hours see http://www.rxlist.com/klonopin-drug/clinical-pharmacology.htm

My opinion is that it would be a good idea to make sure that the testing you have done includes tests for the diseases that can cause burning feet, as there are not very many of them and it may help lead towards a correct diagnosis.

I do not know what tests KDM runs, it would be interesting to see what tests he is running on you, but I have seen other CFS doctors who charge large amounts of money for tests that are not useful diagnostic tests and they then say that these tests prove their theories even though there is no replicated science to back it up. So I would advise a cautious attitude

Hope this helps

All the best

 

[szenn]

Hi Szeen, I‘ve read through your posts and in my opinion you do not seem to have the symptoms of ME. But you do have symptoms that suggest your doctors have failed to find the right diagnosis.

Because it is a rare symptom burning feet is quite likely to be useful in finding the cause of your problems. Conditions that can cause burning feet are listed here http://www.rightdiagnosis.com/symptoms/burning_feet/causes.htm and http://en.diagnosispro.com/differential_diagnosis-for/burning-feet/24711-154.html the most common causes are Diabetes, B12, Folic acid, B6 and niacin deficiencies. But there are lots of rarer conditions that may have to be investigated. When you say you are red like a tomato most days is this on your face or allover? If it is on your face then lupus should be checked for.

Possible causes of bladder burning sensation are listed here http://www.rightdiagnosis.com/symptoms/bladder_burning_sensation/causes.htm

Rivortril is also called clonazepam, and klonopin its side effects are listed here http://www.drugs.com/sfx/clonazepam-side-effects.html it can also have bad effects when taken by people who have the diseases that are listed on this page http://www.news-medical.net/drugs/Rivotril.aspx as you have yet to be diagnosed my opinion is that it is risky to take any medication until you have a real diagnosis. It is physically addictive in the sense that your body can become dependent on it, and it can have very serious withdrawal symptoms. Its half life is typically 30-40 hours see http://www.rxlist.com/klonopin-drug/clinical-pharmacology.htm

My opinion is that it would be a good idea to make sure that the testing you have done includes tests for the diseases that can cause burning feet, as there are not very many of them and it may help lead towards a correct diagnosis.

I do not know what tests KDM runs, it would be interesting to see what tests he is running on you, but I have seen other CFS doctors who charge large amounts of money for tests that are not useful diagnostic tests and they then say that these tests prove their theories even though there is no replicated science to back it up. So I would advise a cautious attitude

Hope this helps

All the best

Hi Ric

Thank you for the thoughtful and comprehensive reply.

I have had Thyroid, B12, diabetes and Menopause FSH levels checked. I have also been checked for Lupus and seen by a neurologist. My burning feet are not related to peripheral neuropathy.

I trust KDM. He is a professor with extensive knowledge. He charges 80 euros for a consultation unlike many of the well known CFS American doctors (Enlander, Lapp, Cheney and their ilk) who only seem interested in treating ME/CFS patients who are bourgoise. The poorer patients with CFS/ME have usually had to make incredible sacrifices with their homes, budgets and families to pay for the extortionate prices of treatment and consultations. To charge a group of people who cannot work more often than not is a crime in my opinion. If these doctors really cared then why only treat the rich? Why take the limited funds of those patients with so little money?

From what I can gather, KDM does not believe CFS/ME is one illness but rather caused by many different pathogens that ultimately cause havoc on the immune, digestive and nervous system. He believes that identifying the pathogen will help find the right treatment.
In the UK, after you have done a battery of basic blood tests and rheumatology/neurology tests CFS/ME is often diagnosed when other well known illnesses have been eliminated. The NHS (probably because of lack of funding and lets face it the NHS is on its Knees) don't investigate further after certain illness/diseases have been ruled out. They don't test for Lyme, chlamydia pneumonia etc. So the patient is then left to their own devices, and given ineffective psychological treatments, GET, CBT etc.

CFS/ME (for want of a better name) symptoms can happen gradually. Or in my case, if I have Lyme or one of the family of similar diseases my symptoms may be in the early stages. I am not willing to wait it it out. Burning feet, bladder issues, sleep maintenance problems, digestive problems are symptoms of the lyme family of pathogens I have heard.

KDM makes no money from the blood work that the patient has. In fact I am invoiced by labs individually.

I believe he is an honest, ethical, and extremely intelligent man who is dedicated to helping people with immune/neurologiacl problems get better. He is actively researching and publishing all the time.

If the blood work shows nothing then I have eliminated more possible causes. I will do my best to find out what is wrong with me.

He didn't twist my arm to consult with him nor to get any tests.
I wish more doctors took such a holistic and patient centred approach.

I hope you are not offended by my response. After meeting him and spending time at his clinic and talking with other patients I feel very strongly about the ethics and ideologies of this man.

 

[rlc]

Hi szenn, not at all offended, like I say I don't know what tests KDM does, I'm just aware that some of the docs in this filed seem to be charging a lot for very little, hopefully this batch of tests will find what is causing your problems, if it doesn't you could try getting KDM to look at the info in the links in my last post that lists all the causes of burning feet, and it may help him to find what's wrong.

All the best

 

[Sushi]

ric said:

....hopefully this batch of tests will find what is causing your problems, if it doesn't you could try getting KDM to look at the info in the links in my last post that lists all the causes of burning feet, and it may help him to find what's wrong.

KDM is an internist, cardiologist and professor of physiology and pathphysiology with a Ph.D. In my experience, he doesn't miss much.

Sushi

 

[Daffodil]

i have wasted my mother's life savings on american doctors over the years, some charging $1000 for 1 hour. KDM is a nice change. i wish i had gone to him long ago.

szenn... ..even though i had sophisticated leaky gut testing in NYC several times. as well as at the lab in Nevada, it always came up negative, Dr. DeMeirleir said I had severe leaky gut. He tested secretory IgA, sCD14, etc...things that others do not do. He also gave me a list of foods to avoid, that cause inflammation for me.

I have had Lyme testing all over the place, including at Igenex and MDL. It was always negative. However, Dr. DeMeirleir's testing showed Borrelia and possible Bartonella. These infections have the capacity to suppress the immune system.

 

[Gypsy]

I am shocked by how many people seem to be testing positive for lyme, bartonella and/or borrelia and other similar diseases, by KDM's testing, when the many numerous times they have been tested at "home" the results were negative. It makes me wonder if I should persue these diseases more thoroughly, but I do not want to just go to a lyme doc, because it seems like they diagnose everyone who walks through the door with lyme. And yet, I look up the symptoms and they really do not fit me....but who the hell knows?!

Does KDM have access to much more sophisticated testing for these diseases?

I wish there was an American version of KDM. No way I can travel to Belgium!

Daffodil

Would you mind sharing your "leaky gut" treatment plan when it is all in place? Are you going to take antibiotics for the bartonella? I really wish you much improvement!

Also, does KDM test or look for enteroviruses?

 

[snowathlete]

I am shocked by how many people seem to be testing positive for lyme, bartonella and/or borrelia and other similar diseases, by KDM's testing, when the many numerous times they have been tested at "home" the results were negative. It makes me wonder if I should persue these diseases more thoroughly, but I do not want to just go to a lyme doc, because it seems like they diagnose everyone who walks through the door with lyme. And yet, I look up the symptoms and they really do not fit me....but who the hell knows?!

Does KDM have access to much more sophisticated testing for these diseases

I think he has only been looking at Bartonella for a couple of years now (I think he said that in one of his recent videos) but he is finding it in a lot of patients. I wrote an article about Bartonella a couple of months ago, but since De Meirleir diagnosed me with it shortly after that article, I have researched it a lot more. It is very underrecognized. There are many different strains, with around a dozen known to infect humans, and they create different symptoms and severity of disease. Most tests only check for one or two strains. KDM and a few other specialists in the world check for many species. They are nasty bacteria to have. There are a lot of subtle symptoms that I have now realised are down to Bartonella. If you are lucky enough to see a doctor who knows what to look for it is not actually that hard to spot in cases like mine, but there are so few knowledgeable doctors out there. Some LLD do know about it, and there are two or three very good Bartonella experts in the US. It is not out of the question, in my opinion, that Bartonella species could be the cause of most people's ME/CFS. I expect KDM will publish on it at some point before too long, but there is hardly anything published on Bartonella and ME/CFS to date, by anyone.

KDM thinks I have Lyme (Borrelia) too, as well as Bartonella. Testing reliability is a known issue with Borrelia. I am having another more specific test next month.

 

[aquariusgirl]

Joel how is the bartonella treatment going? What other borrelia test r u getting? Tnx

 

[Daffodil]

Hi Gypsy. the thing is....part of me is still skeptical about lyme. I barely went outside my whole life and never lived in a deer tick area...it just seems so strange that I would have this. ..but I have heard that KDM's testing is very sophisticated so I guess I must have it. I suppose I will know when I start antibiotics. If I get a herx, it must be killing something. I have tried Doxy and other ones in the past but nothing ever happened at all. The ones KDM prescribes are different, I think.

KDM tests stool so the gut profile is different for everyone, and each person's protocol is different. I have to take Enzym-Complete, Daosin, Omega 3, VSL-3. I am worried I will become very sick on the VSL-3. I had a very bad reaction to Butyrate, which is supposed to help leaky gut. I haven't heard of anyone else having this reaction.

I am continuing the low dose GcMAF, too, as long as I think I can tolerate the inflammation at the time.

I plan on following KDM's protocol to the letter and just hope for the best. I have nothing left to lose at this point.

Going to KDM is about 1/10th the price of going to other doctors. You can do the entire trip for maybe $4000.

I don't think he checked for enteroviruses in me, but this could be due to the fact that I had these tests before or maybe it depends on the patient's symptoms...

 

[szenn]

Hi Gypsy. the thing is....part of me is still skeptical about lyme. I barely went outside my whole life and never lived in a deer tick area...it just seems so strange that I would have this. ..but I have heard that KDM's testing is very sophisticated so I guess I must have it. I suppose I will know when I start antibiotics. If I get a herx, it must be killing something. I have tried Doxy and other ones in the past but nothing ever happened at all. The ones KDM prescribes are different, I think.

KDM tests stool so the gut profile is different for everyone, and each person's protocol is different. I have to take Enzym-Complete, Daosin, Omega 3, VSL-3. I am worried I will become very sick on the VSL-3. I had a very bad reaction to Butyrate, which is supposed to help leaky gut. I haven't heard of anyone else having this reaction.

I am continuing the low dose GcMAF, too, as long as I think I can tolerate the inflammation at the time.

I plan on following KDM's protocol to the letter and just hope for the best. I have nothing left to lose at this point.

Going to KDM is about 1/10th the price of going to other doctors. You can do the entire trip for maybe $4000.

I don't think he checked for enteroviruses in me, but this could be due to the fact that I had these tests before or maybe it depends on the patient's symptoms...

What are bartonella symptoms?
Is bruising and facial flushing ?

 

[Sushi]

I have had KDM's testing for Borrelia and Bartonella. He does use sophisticated testing--he tested me in at least 4 different ways.

I was negative on all the tests for Borrelia but since they found "fragments" of Bartonella in the PCR, this has gone for genetic sequencing. He always follows up a positive or "grey" result with genetic sequencing. Thus, by identifying the exact nucleic acid, he can be sure of what he is finding.

Sushi

 

[maryb]

I'm never for 'dissing' any ME docs. KdM is a great doc and if he can find the source of some/any of your symptoms - great - in my case he couldn't - apart from some gut bacteria which he treated me for, but I'm no better than I was 2 years ago. I don't regret spending any of the money on tests etc. he has very reasonable charges. Always good to be hopeful but also be realistic too.

Unlike szenn every private doctor I've seen (many), going back 7yrs ago starting with Dr Andy Wri-ght has diagnosed me with ME.

 

[snowathlete]

Joel how is the bartonella treatment going? What other borrelia test r u getting? Tnx

I've been on treatment about 6 weeks, and I feel pretty awful. Definitely worse than before treatment. I've heard others say that they went through periods like this, often for months, before improvement, so I am somewhat reasured. But of course, it's scary not knowing how it's going to pan out. Hopefully it'll be worth it and in time I will improve to higher level than pre-treatment.

Research so far indicates the Bartonella have very low endotoxicity, so it is unlikely to be a herx reaction to that, I would think. This perhaps supports the view that Borrelia is present, which would give more of a reacton. Or it could be some other bacteria. Or it could be some other type of reaction not related to endotoxicity.

The Borrelia test I already had at Redlabs showed only band41 which is flagella belonging to spirochetes. Borrelia is a spirochete, but it's not the only one, so the test does not confirm Borrelia.
The test I'm having next month is the infectolabs one:
http://www.infectolab.de/index.php?id=51&L=1

 

[snowathlete]

What are bartonella symptoms?
Is bruising and facial flushing ?

Yes, these can be symptoms of Bartonella. Rashes and skin conditions are common symptoms of Bart.
Bartonella is ultimately a RBC parasite, so they affect your RBCs and also your endothelial cells (lining of the blood vessels). They cause blood vessel proliferation, lots of inflammation and immune dysfunction, and will usually infect your liver, spleen, lymph and bone marrow. Feet are often affected.

Those with Bartonella would do well to read Buhner's book, which is not just about herbal treatments, it gives a very good explaination of the bacteria, what it does, what the symptoms are of the different species, and so on.

 

[Lymelight]

The test I'm having next month is the infectolabs one:
http://www.infectolab.de/index.php?id=51&L=1

I had this test a few weeks ago and it came back clearly positive. I know Borrelia is difficult to detect and that there are a lot of false negatives, but i'm wondering what is the possibility of a false positive with this test ?

 

[Daffodil]

maryb....may i ask..how long ago you went to see KDM? maybe he is doing more sophisticated testing now than he did when you went to him?

 

[snowathlete]

I had this test a few weeks ago and it came back clearly positive. I know Borrelia is difficult to detect and that there are a lot of false negatives, but i'm wondering what is the possibility of a false positive with this test ?

Did you have other tests previously that came back neg? Just curious.

No idea about false positives but if I come back pos then I'll be looking into that question too.

 

[Sushi]

I had this test a few weeks ago and it came back clearly positive. I know Borrelia is difficult to detect and that there are a lot of false negatives, but i'm wondering what is the possibility of a false positive with this test ?

This test has a good reputation for accuracy--one researcher said it was about 90% accurate. For me the results for it matched the 3 other results for borrelia, so that is reassuring.

Sushi

 

[Lymelight]

Did you have other tests previously that came back neg? Just curious.

No idea about false positives but if I come back pos then I'll be looking into that question too.

No, this is the first and only test I did. I did other tests this week: Cd 57, nagalase,immune system,Bart, candida,etc ... but no more for Borrelia. I will get the results in 2 months.

 

[maryb]

maryb....may i ask..how long ago you went to see KDM? maybe he is doing more sophisticated testing now than he did when you went to him?

I first went 3yrs ago - I was better then than I am now. I had a programme of a/biotics and more testing, a lot normal , but all markers for chronic infection positive CD8 etc - last year another lot of bacterial testing - negative.
High nagalase as well 2.5.