• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

In Belgium to see KDM

Messages
49
Location
NJ
Wow, KDM says that Benzos are not addictive? Well, let me tell you this much. I took klonopin for about a year. When I tried to come off I almost died....literally. It took me about 7 months to get off plus untold suffering. I strongly advise against taking any benzo long term , meaning for more than a couple of weeks.
 

Clodomir

Where is the sun?
Messages
212
Location
Belgium
Hi Alex,

KDM don't say that benzo is not addictive: he give me some klonopine but warning me not to take more than 20 drops ( he gave drops only for me) a day because otherwise it will be addictive.
And I take 10 to 15 drops each day depending how I feel. But during this summer holiday, i took only 5...
Now with my abx iv, i take 15, but when it will be finish, i will disminish.

Have a nice day

Clodomir
 
Messages
97
Location
London
Hi Alex,

KDM don't say that benzo is not addictive: he give me some klonopine but warning me not to take more than 20 drops ( he gave drops only for me) a day because otherwise it will be addictive.
And I take 10 to 15 drops each day depending how I feel. But during this summer holiday, i took only 5...
Now with my abx iv, i take 15, but when it will be finish, i will disminish.

Have a nice day

Clodomir
He didn't say that to me. He said the drops were not addictive. but I never took them in any case. I try to minimise the drugs I take.
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Well, this is my update.

In the beginning of December KDM told me to stop ABX (the last one was ketek) and valaciclovir. I was on abx since April I guess and on valaciclovir for more than year.
As usual he told me almost nothing. He started me on herbal protocol Samento + Banderol + Cumanda. I guess this is his new thing for people not improving on antibiotics. I asked if I could benefit from IV treatment instead and he answered "Maybe".

After 10 days without any meds I returned from Brussels and caught something like flu with fever, not usual for me, (bacterial/ebv relaps? who knows). Ironically I went through Cymbalta withdrawal at the same time...

From that point I´m generally worse. Definitely more inflammation. I´m sure that valaciclovir helped keeping EBV supressed (which was active for years) because after almost year my ebv antibodies went negative or down.
I feel like I´m at the square one again:(

I´m 5 days in the Samento + Cumanda treatment. Nothing so far. Is anyone else taking it? Any experience?

szenn: How is your daughter doing on the herbal protocol?
 
Messages
28
Location
Brussels, Belgium
update?
Just wanted to say firstly, Happy Christmas
Secondly, how is everybody? Have not heard how treatment is going with ;
Snow, Sushi, Clodomir, Orchid, Lymelight, Cigana, vojta (?) etc sorry if i have left people out.
I have been on treatment for nearly four months now. My daughter 1 month (she is only 5 so on herbals, alternating Banderol and Samento). Some of my symptoms are better some the same. Due to see KDM again on Jan 21st

Thanks and Happy New Year to you !

I'm on Clarithromycine and Doxycycline for 3 months now. My body seems to tolerate those abx quite well. During the first 6 weeks I had a worsening of my symptoms but since then I'm more or less back to where I was before starting (difficult to say if it is better or not ..).
I have the impression my brain is clearer and I can concentrate for longer periods.

I will get my new CD57 and inflammation panel test results end of the month. Normally I should get about 6 months abx and then switch to herbal protocol. Will see.

Hope to get rid of those bugs in 2014 ;-)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Anyone here on IV abx? I will be starting treatment in 2 weeks... for a 12-weeks period and then reevaluate and retest.
 
Messages
28
Location
Brussels, Belgium
Thanks and Happy New Year to you !

I'm on Clarithromycine and Doxycycline for 3 months now. My body seems to tolerate those abx quite well. During the first 6 weeks I had a worsening of my symptoms but since then I'm more or less back to where I was before starting (difficult to say if it is better or not ..).
I have the impression my brain is clearer and I can concentrate for longer periods.

I will get my new CD57 and inflammation panel test results end of the month. Normally I should get about 6 months abx and then switch to herbal protocol. Will see.

Hope to get rid of those bugs in 2014 ;-)

Well after 2 months abx my CD57 count dropped from 74 to 44 ...
Wasn't it supposed to raise instead ?
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Well after 2 months abx my CD57 count dropped from 74 to 44 ...
Wasn't it supposed to raise instead ?

Mine CD57 went down first too but KDM explained that its common that in the beginning of tretmant it drops before it goes up.
It is probably because CD57 is moving back from bloodstream inside cells. I don´t remember if I heard this from KDM or read it in german lyme article or here in forum.
 
Messages
21
Does the test for IL-1betaS mean you could have cancer...mine is 5 range is 0,00 - 3,00 pg/ml Can someone explain this test to me???
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Does the test for IL-1betaS mean you could have cancer...mine is 5 range is 0,00 - 3,00 pg/ml Can someone explain this test to me???
Mine was:
1,2 (2/2011)
0,1 (11/2011)
8 (5/2013)
802 (8/2013)
in same range

No one told me anything about it. But it seems it plays role in inflamation (no need to involve cancer). In my case I think that big spike was because of new co-infection which is causing me chronic inflamation of prostate.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I'm currently on Rifampin and Clarithromycin, been on abx since May last year. No improvement, worse than pre-treatment. Though things have been complicated by my getting ulcerative colitis in September and I am only now, hopefully, starting to get it under control. Till then it's hard to gauge if my treatment is working or not, but I'm not convinced it is really. I saw KDM in Dec and he told me it takes time.
 

Jon_Tradicionali

Alone & Wandering
Messages
291
Location
Zogor-Ndreaj, Shkodër, Albania
I'm currently on Rifampin and Clarithromycin, been on abx since May last year. No improvement, worse than pre-treatment. Though things have been complicated by my getting ulcerative colitis in September and I am only now, hopefully, starting to get it under control. Till then it's hard to gauge if my treatment is working or not, but I'm not convinced it is really. I saw KDM in Dec and he told me it takes time.

I will not bother then.

Thanks.
 
Messages
97
Location
London
I'm currently on Rifampin and Clarithromycin, been on abx since May last year. No improvement, worse than pre-treatment. Though things have been complicated by my getting ulcerative colitis in September and I am only now, hopefully, starting to get it under control. Till then it's hard to gauge if my treatment is working or not, but I'm not convinced it is really. I saw KDM in Dec and he told me it takes time.
how are you now snow?
 
Messages
97
Location
London
Has KDM helped anyone get much better from this disease?
My daughter seems better.
It is hard to say with me. I have been on treatment nearly 6 mths now. Some days are good others not so. sleep is still disrupted but i do manage more than before. feet burning less. hands till hurt periodically . KDM was very vague when i last saw him
 
Messages
97
Location
London
Well, this is my update.

In the beginning of December KDM told me to stop ABX (the last one was ketek) and valaciclovir. I was on abx since April I guess and on valaciclovir for more than year.
As usual he told me almost nothing. He started me on herbal protocol Samento + Banderol + Cumanda. I guess this is his new thing for people not improving on antibiotics. I asked if I could benefit from IV treatment instead and he answered "Maybe".

After 10 days without any meds I returned from Brussels and caught something like flu with fever, not usual for me, (bacterial/ebv relaps? who knows). Ironically I went through Cymbalta withdrawal at the same time...

From that point I´m generally worse. Definitely more inflammation. I´m sure that valaciclovir helped keeping EBV supressed (which was active for years) because after almost year my ebv antibodies went negative or down.
I feel like I´m at the square one again:(

I´m 5 days in the Samento + Cumanda treatment. Nothing so far. Is anyone else taking it? Any experience?

szenn: How is your daughter doing on the herbal protocol?
she is doing very well indeed