In Belgium to see KDM

[Sebby]

Ask KDM to also give you the Infectolab LTT test. This also measures active Lyme infections. I am also one of his patients.

Best wishes,
Sushi

Yes, I have already had LTT test done by Infectolab and it was negative. I pretty much had every possible Lyme test done and everything was negative except Dark Field Microscopy revealed that there were borrelias in the blood swimming around.

I would be impossible that I wasn't infected by Lyme because I have been bitten over 100 times in my life.

 

[Sushi]

Yes, I have already had LTT test done by Infectolab and it was negative. I pretty much had every possible Lyme test done and everything was negative except Dark Field Microscopy revealed that there were borrelias in the blood swimming around.

I would be impossible that I wasn't infected by Lyme because I have been bitten over 100 times in my life.

If you are low in lymphocytes, the LTT may need a larger blood sample I'm told. Just a thought!

Best,
Sushi

 

[szenn]

I also booked an appointment with KDM and am going to visit him. I have been severely sick for a few years and have tried so many different therapies to no avail.

One of my main symptoms are gut issues. I read a lot that KDM tests for various gut imbalances and I would be eager to hear if he recommended anything for gut to any of you? Anything like some special probiotics or anything that would repair gut lining?

I'd like to give my humble opinion about Lyme disease. I live in rural central Europe where Lyme is extremely common. Even mainstream doctors recognize that about 30% of people living in my country are Lyme positive yet majority of people who are Lyme positive won't develop symptoms. Ticks are so common on the street where I lived on that people there pull a tick off of their body every other day yet majority is healthy. Statistically every fourth tick carries Lyme bacteria. Considering how many ticks these people had in their lifetime it is impossible they wouldn't be infected.

I'm saying this because you can be positive on any Lyme test (Western blot, PRC, ELISA, LTT...) but that does not mean that you have active Lyme disease. What these tests are measuring is the presence of antibodies against Lyme bacteria. That means you may have been infected by Lyme sometime in the past but you don't necessarily have active bacteria right now. The only test out there that measures activity of Lyme is CD57 test. This test measures how strongly certain subset of natural killer (NK) cells is suppressed. The blood for this test has to be analized as soon as possible because every 24 hours about 20-25% of cells die and the test is easily wrong. Still the test is not fully studied yet.

The question really is why majority of people who are infected with borrelia don't develop chronic symptoms but some will develop severe symptoms. Why in most cases Lyme is cured by short term antibiotics (1 month of Doxy) but some people need years of long-term antibiotics to feel somewhat better? I believe it comes down to our immunity. I really don't want to offend anyone but I know so many people who have been taking antibiotics for years and each time they stopped they relapsed. I don't know if this is the best approach to treat Lyme. I think we need to fix our gut which is central to everything (most of immunity resides in gut), our nutritional deficiencies, methylation abnormalities, and so on before proceeding to Lyme. I think a healthy immune system should kick out Lyme easily.

If Lyme is treated within six weeks, with a two-month course of the antibiotic Doxycycline, it can often be cured: beyond this time, it becomes disseminated around the body and has to be attacked with an array of antibiotics for months or years. I saw a source that suggested an estimated two-thirds of people with disseminated lyme disease can still be cured if given antibiotics for long enough. maybe that is if they have not got a host of co infections.
Other research suggest that as bacteria can change from spirochete form to a cyst form that develops a biofilm around it the biofilm must be penetrated by what people with ‘Lyme speak’ call biofilm breakers. They say that unless biofilm breakers are added, the bacteria will change into cyst form and hide and when you stop taking antibiotics the lyme returns to create more havoc. So biofilm breakers break the biofilm and allow the antibiotics to work.
Dont know why some get it more mildly; stronger immune systems, less dissemination of bacteria around the body, no co infections. but apparently if you have it longer than 6 moths it is chronic

 

[szenn]

Of course this begs the question of whether KDM uses biofilm breakers, anybody know?
Just went on a Lyme forum and was told that Doxy causes the bacteria to change to cyst form. and I am on Doxy
Plus met a user who is also a member here called Athene, who told me she was a patient of KDM and that he used the marshall protocol and caused a severe relapse. She was extremely negative about KDM and I mean extremely. ironically she told me to join Phoenix Rising as members here would tell me just how bad he was.
I just wish I knew enough about Lyme to make an informed decision about not only doctors but treatment. I really like KDM but now my kids have this I can't rely on my gut instinct......especially as my guts are in such a poor state.
Any advice? Some guy said you can only trust a doc if you know he has cured at least 3 people. I don't know 3 people he has cured ..only people who he is treating.
This is why we should keep threads open so we and others can check progress of treatments by our doc and pass on the good or bad news

 

[k-AUS]

I've been following this thread and having been recently diagnosed as having lyme and chlamydia pn. I'm wondering (worldwide) who is the best person to treat this? I'd seriously like to know.

 

[Sushi]

Of course this begs the question of whether KDM uses biofilm breakers, anybody know?...

He does use biofilm busters and if he used the Marshall protocol it was a long time ago--not no more!

Sushi

 

[szenn]

I've been following this thread and having been recently diagnosed as having lyme and chlamydia pn. I'm wondering (worldwide) who is the best person to treat this? I'd seriously like to know.

i have both these too. kdm or american lyme docs they say. join a face lyme face group page. gotta dash to work now but ill post it later. there is a host of advice on US lyme docs mostly. and ones that are credited or acknowledged as having cured lyme. they dont know much about europe/aus though. and uk is useless.

 

[szenn]

He does use biofilm busters and if he used the Marshall protocol it was a long time ago--not no more!

Sushi

Thanks for that Sushi. as i mentioned to you before, i am not on a lyme doc witch hunt. i really like kdm but we have to stay objective about treatment. i am glad people have good experiences of him, just wish i had the knowledge to be more discerning when people like athene tell me negative stuff xx i am easily scared as my kids have it

 

[Sebby]

Did anybody get any kind of treatment for gut such as probiotics, glutamin, butyrate or something that would help with severe GI issues?

It seems to me that in the past he focused a lot on the gut but now he only focuses on infections especially Lyme and Co's.

 

[Sebby]

Of course this begs the question of whether KDM uses biofilm breakers, anybody know?
Just went on a Lyme forum and was told that Doxy causes the bacteria to change to cyst form. and I am on Doxy
Plus met a user who is also a member here called Athene, who told me she was a patient of KDM and that he used the marshall protocol and caused a severe relapse. She was extremely negative about KDM and I mean extremely. ironically she told me to join Phoenix Rising as members here would tell me just how bad he was.
I just wish I knew enough about Lyme to make an informed decision about not only doctors but treatment. I really like KDM but now my kids have this I can't rely on my gut instinct......especially as my guts are in such a poor state.
Any advice? Some guy said you can only trust a doc if you know he has cured at least 3 people. I don't know 3 people he has cured ..only people who he is treating.
This is why we should keep threads open so we and others can check progress of treatments by our doc and pass on the good or bad news

I believe that many people who are treated for Lyme disease with combos of long term antibiotics don't have active Lyme disease and this is why they don't notice any improvement. I know many people who were treated for years of abx and didn't get any better or got even worse. That's because you can have positive Lyme tests but Lyme isn't active.. In central european countries most people in rural areas have Lyme but it won't go into active state (Immune system keeps it at bay).

My infectious disease doctor told me that in endemic Europe about 30% of population harbors Lyme bacteria but majority doesn't develop chronic symptoms. This raises big question why some develop chronic Lyme but not all?

I believe Lyme is mostly opportunistic infection like herpes. It starts wreaking havoc in body when body is weak enough and when immune system is not functional.

Was anyone here prescribed anything else by KDM except antibiotics for Lyme and its coinfections? Thanks!!

 

[Orchid]

I am very glad to have KDM as a doctor. I don't think any doctor in NL would have suggested or tested me for Lyme and co. seen that my symptoms are not 'standard'. I am also a scared - there is no way to know that his approach will work.
Szenn - I so agree with you on being objective about treatment. I too wish that treatment results were public and transparent. At the same time, I think the sub-set of patients he sees are not 'simply' Lyme patients. Often so much more is going on. And even if it were only Lyme - it seems that what works and what doesn't depends very much on the person.

 

[Orchid]

I get my results Tuesday - will keep you updated

 

[Orchid]

Szenn - from what I have heard KDM does use biofilm breakers in some people, but not all...
Sebby - from what I have heard he uses mega doses of probiotics...

 

[Sushi]

...
Was anyone here prescribed anything else by KDM except antibiotics for Lyme and its coinfections? Thanks!!

Hi Sebby,

Yes, I was given a full protocol to deal with all the results of my testing. I am taking many things other than abx.

Sushi

 

[Daffodil]

i have been on abx for about 3 months and have been "herxing" for a few weeks. God i hope its a herx

 

[szenn]

i have been on abx for about 3 months and have been "herxing" for a few weeks. God i hope its a herx

Have you spoken to kdm

 

[szenn]

Szenn - from what I have heard KDM does use biofilm breakers in some people, but not all...
Sebby - from what I have heard he uses mega doses of probiotics...

I spoke to KDM yesterday on the telephone. I asked about biofilm breakers. He said yes, he does use them but not at the beginning as the cyst form only account for about 3 percent of the bacteria.

 

[Daffodil]

yes I spoke to him and he thinks its herxheimer

 

[Sebby]

Is it possible to have follow up appointments via the phone or is it necessary to go there in person every time?

 

[maryb]

I saw him in July 2012 - he wanted to see me in person this year May/June - I wasn't allowed to make a telephone appt, so unless I go over there thats it..........