Phone consultation with KDM, input gratefully received....

[memeid]

De Meirleir diagnoses nearly everyone with lyme's disease these days. I've heard that quite a number of people don't get better with the (heavy) antibiotic treatment he prescribes. Makes me kind of skeptical...

 

[Spinney Lainey]

De Meirleir diagnoses nearly everyone with lyme's disease these days. I've heard that quite a number of people don't get better with the (heavy) antibiotic treatment he prescribes. Makes me kind of skeptical...

Yeah. Seems very strange. Especially as I don't remember having had a tick bite.

 

[Valentijn]

De Meirleir diagnoses nearly everyone with lyme's disease these days. I've heard that quite a number of people don't get better with the (heavy) antibiotic treatment he prescribes. Makes me kind of skeptical...

In my case, the diagnosis seems to have been correct. I had a classic Herxheimer reaction from weeks 2-4 of IV antibiotics, which only really happens with very specific bacterial infections, including Lyme (syphilis die-off also triggers a Herxheimer reaction, but I'm pretty sure I didn't have that one ).

I'd also been bitten dozens of times by ticks about 20 years ago, which is also when some of my health problems began, primarily related to inflammation at the time.

I have seen accounts of a few people who weren't helped, and KDM has said himself that not everyone who he sees recovers. But I've also heard of quite a few people doing much better following antibiotic treatment for Lyme and/or co-infections, including several that I spoke to in person at his clinic. Who are these hordes of people who haven't been helped, and where did you hear about them?

 

[Spinney Lainey]

I sent you a conversation.

Sushi

Can't see the conversation...

 

[Spinney Lainey]

@RML do you remember having had tick bites?

 

[Spinney Lainey]

@Valentijn would the LTT test test for any co-infections, as well? If so, what other infections does this test for?

 

[Valentijn]

@Valentijn would the LTT test test for any co-infections, as well? If so, what other infections does this test for?

No, it doesn't test for co-infections. Just the various types of Lyme. And it's the "Elipsot-LTT", not the "LTT" test. They are different tests, so it's important to specify that.

 

[justy]

Hi Spinney, I just had my phone consult and KDM said that I had borrelia, bartonella, and chlamydia pneumonia - although only the bartonella and Cpn showed as posiive on my tests. My infectolab LTT test was valued as
1
1
1
with the range being more than 2 - when I questioned this KDM said that three 1's was not the same as three 0's and that my symptoms and the rest of my results show the footprint of Borrelia all over them. I am a bit shocked as I presumed I didn't have Lyme, having three infections feels unpleasant, but I guess it gives us a target for treatment

 

[bertiedog]

@justy I ordered my own tests through Infectolab and got strongly positives on the Ellispot LTT and also one band on the Immunoblot plus low CD57 cells at 63 well below the reference range. Also I had a borderline reaction to Ehrlichia. It was all quite a shock but I have decided to go down the route of seeing a trained herbalist who treats a lot of Lyme patients and she also works with a qualified doctor who has a special interest in Lyme disease. I see her next Tuesday so hopefully will start some treatment soon. I believe she uses Buhner herbs and I have been told she attends the Lyme conferences.

I don't really want to go down the antibiotic route because I have a dreadful time with them and get yeast infections from them very easily. Also most of them give me horrendous migraines after a few days (probably because of the borrelia). Hopefully the herbs will be a bit gentler on me. Abx also seem to block the effect of the steroid I am dependent on because most of them use the same detox pathways and that might be the reason why I struggle such much with them.

Good luck with your treatment.

 

[Sushi]

Can't see the conversation...

It is in your inbox at the top of the page.

Sushi

 

[Sushi]

@justy I ordered my own tests through Infectolab and got strongly positives on the Ellispot LTT and also one band on the Immunoblot plus low CD57 cells at 63 well below the reference range. Also I had a borderline reaction to Ehrlichia. It was all quite a shock but I have decided to go down the route of seeing a trained herbalist who treats a lot of Lyme patients and she also works with a qualified doctor who has a special interest in Lyme disease. I see her next Tuesday so hopefully will start some treatment soon. I believe she uses Buhner herbs and I have been told she attends the Lyme conferences.

I don't really want to go down the antibiotic route because I have a dreadful time with them and get yeast infections from them very easily. Also most of them give me horrendous migraines after a few days (probably because of the borrelia). Hopefully the herbs will be a bit gentler on me. Abx also seem to block the effect of the steroid I am dependent on because most of them use the same detox pathways and that might be the reason why I struggle such much with them.

Good luck with your treatment.

KDM has me on one abx (for Bartonella, not Borrelia) and several herbal anti-microbial tinctures that work like abx. The tinctures are much harder for me than the abx! If you go the herbal route, most find that starting at a lower dose than recommended works better--at least for those of us who also have ME.

One of my friends followed the Buhner protocol, felt really good for a couple of weeks and then got too sick to function at all. I am taking Dr. Cowden's herbals and while he recommended starting with 1o drops, I had to start with 1/8 drop.

Best wishes with this,
Sushi

 

[Scarecrow]

Justy, just saw your reply on Dr.Patient's poll. Sorry for the news you've had today. It must have been more of a shock since you thought it had been ruled out. I suspect that I've been 'Lymed' for 35 years and I might follow your example and visit KDM. I sort of don't want to know though.

I wish you luck with the treatment.

 

[bertiedog]

KDM has me on one abx (for Bartonella, not Borrelia) and several herbal anti-microbial tinctures that work like abx. The tinctures are much harder for me than the abx! If you go the herbal route, most find that starting at a lower dose than recommended works better--at least for those of us who also have ME.

One of my friends followed the Buhner protocol, felt really good for a couple of weeks and then got too sick to function at all. I am taking Dr. Cowden's herbals and while he recommended starting with 1o drops, I had to start with 1/8 drop.

Best wishes with this,
Sushi

Thanks for letting me know about this Sushi, I will definitely look out for this. I would be happy to try Dr Cowden's herbs but I guess the herbalist will make up a concoction especially as I know that all the herbs that can cause vasodilation are no good for me because they start off really horrendous migraines and then I need Imitrex to constrict the blood vessels. So I do appreciate the herbal route isn't going to be easy either. Just hope she is really open minded but will soon find out.

Pam