Post Lyme Treatment with KDM

S

Spiderbaby

Messages
36
@Jenc What was his rationale for changing from your original plan of 500mg DSF a day to the more gradual approach of working up from 50mg a day?
 
J

Jenc

Messages
50
@Spiderbaby - frankly I think he has just become more informed. To start at 2x250/day would be a disaster and his prescribing that way informed me that he was kind of making it up (imo). The 2nd time I saw him, his clinic letter also included that my liver enzymes need to be checked every 3 weeks- again something he made no mention of in his earlier clinic letter, in addition to ramping up to a low dose eventually. Frankly, 250/day would be a maximum for me - yet his 1st prescription was for 2x that off the bat... Are you looking at using disulfiram?
 
S

Spiderbaby

Messages
36
Thanks for your swift reply! I think a lot of patients and doctors are winging it on the dosing of DSF, using a lot of the first generation of patients as guinea pigs to see what side effects manifest and adjust the dosage and method of delivery accordingly.
That might benefit those of us who adopt a wait and see approach, having been burnt before with antibiotics, but I feel very concerned for people who have no previous Lyme treatment experience and go head long into this without having the full facts and the support system in place to deal with side effects and regular liver function testing as well.
Like a lot of people Iam following developments closely without committing to DSF yet, I am also still waiting for my Lyme Phage test to come back before I can make any informed decisions on the next step, but will be sure to find out about all other treatment paths before embarking on DSF.
Did he comment on where you might source DSF at 25mg or is that available where you reside?
 
J

Jenc

Messages
50
he didn't suggest where I could get 25mg - turns out my liver tests are all abnormal atm so that makes the decision to not start DSF very easy! Wait and see for me also
 
S

Spiderbaby

Messages
36
I'd imagine at that low dose you would have to get it made up at a compounding pharmacy. At least you were aware of your liver situation before embarking on DSF.
Hopefully more people report their experiences in the meantime so we all can make a safe and informed decision to embark on DSF.
 
MartinK

MartinK

Senior Member
Messages
392
@Jenc I arranged DSF on my own! :)
No visit KDM for one year now... its really hard for me make way to Brussels and my English skill are poor! :)

Start with DSF for me is good - no side effects. Now Im on 3rd dose - about 50-60 mg (I tried to dissolve it under the tongue for maximum availability)
I hope this will bypass possible neuropathy problems! :)

Martin
 
J

Jenc

Messages
50
MartinK said:
@Jenc I arranged DSF on my own! :)
No visit KDM for one year now... its really hard for me make way to Brussels and my English skill are poor! :)

Start with DSF for me is good - no side effects. Now Im on 3rd dose - about 50-60 mg (I tried to dissolve it under the tongue for maximum availability)
I hope this will bypass possible neuropathy problems! :)

Martin
Click to expand...
I'm glad to hear it is working for you!
 
Clodomir

Clodomir

Where is the sun?
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212
Location
Belgium
Hi everyone,

KDM has prescribed DSF for me as post lyme treatment... And it didn't go well... DSF is a drug used in the treatment of alcoholism (alcohol aversion therapy) , and even If I don't drink alcohol, I had all the symptoms of using DSF while drinking (am I oversensitive?): sweating, nausea, tachycardia, facial flushing.... It was and still is (for a few days) a nightmare because DSF is still active during 15 days after stopping medication! The only reason, I found to explain why I was in a terrible condition after taking only 50 mg of DSF, is that sometimes I take drops of burbur ( who contains ethanol, just notice after DSF effects, grrrr). So be very careful with DSF and don't forget that DSF is still working during 15 days after stopping...
https://www.longdom.org/open-access...the-acetaldehyde-syndrome-2329-6887-2-145.pdf
So I am still with my spirochetes....

Have a good day

Clodomir
 
heapsreal

heapsreal

iherb 10% discount code OPA989,
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10,228
Location
australia (brisbane)
Spiderbaby said:
Did he comment on where you might source DSF at 25mg or is that available where you reside
Click to expand...

Most tabs ive seen are 250mg. So for similar situations in the past when ive wanted a lower dose, i have cut it into quarters which is generally easy with a pill cutter or a good sharp knife. Once its in quaters which is 62.5mg, you could crush it into a fine powder and the with a fine blade or similar divide that powder in half but you will have to eyeball the amount. Then buy a pack of empty caps and put the 1/8th of a tab into the empty cap which is about 31mg. Its not 100% but effective for this purpose and close enough to a 25mg dose, i dont think an extra 6mg would matter a great deal.

It looks like an interesting treatment especially as it hits babesia. A recent utube video i saw the dr or researcher basically said at low doses it is working as an anti inflammatory to the cytokines the tick infections cause. But to kill off lyme one has to get to the target dose for 8 weeks. I think it was 250mg for those who weight around 100lb and 500mg a day for those over 200lb.

I also wonder if it would be effective against other infections or even its anti inflammatory effects helpful in cfsme🤔
 
MartinK

MartinK

Senior Member
Messages
392
I feel more inflammation now with DSF - but I think its ok now = herxing. Sauna last day makes me better...and lot of lemon water! Now Im waiting for Alka Seltzer Gold, its sooo hard to buy it in EU countries...

DSF can make problems when:
- candida (emits some alcohol fumes)
- MCAS
- bartonella (DSF not work for this co. , therefore, it may catch fire after biofilm breaks)

This is what I learn from dr. Rajadas and some other doctors. Lot of interviews on YT now!

Martin
 
J

Jenc

Messages
50
By way of update, I have not started the DSF.

Since KDM first prescribed it to me in Nov, the starting dose has been progressively reduced.

In Feb 2020, he prescribes 25g once every 3 days to start. The 1st prescription he wrote me in Nov 2019, was 250g twice a day- eg 500 a day!

His office also provided a hand out on preparing to take DSF attached.

The starting dose is now well below what I've seen from other dr. (62.5/every 3 days). but KDM seems to get the idea of low and slow.

The DSF hand out is less detailed that other info I've read but shows that they recognize some of the challenges of the drug.
 

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S

Spiderbaby

Messages
36
Thanks for the update Jenc. Have you being speaking to patients who are doing the 25mg protocol and if so how are they doing?
 
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