Young UK Musician with lyme

[Valentijn]

To me, 'alternative Lyme' is a label for those who claim that the symptoms of a large percentage of those who fulfill the criteria for CFS are really caused by chronic Lyme, and that they have test which show this and treatments for these people, even thought their claims have never been showed to hold up when assessed under blinded conditions.

No need to worry then ... the test from the lab used by KDM has been shown to have a low rate of both false positives and false negatives, in published research. It hasn't been duplicated independently, of course, but that's hardly their fault.

Additionally, people are routinely treated solely based on the bulls-eye rash ... and even blood drawn from the rash often tests negative for Lyme. Hence I wouldn't place too much faith on "mainstream" tests compared to others. And symptoms + exposure + other lab results seems as good a place to start as any, for patients who are happy to be treated even in the absences of 100% certainty regarding the diagnosis.

 

[msf]

Such a term may be useful, but it requires a much more rigorous definition than the one you gave.

 

[Esther12]

Such a term may be useful, but it requires a much more rigorous definition than the one you gave.

You can get reams of books debate the meaning of conservatism... I knocked out a 30 second forum post! Happy to have others improve upon my rough definition.

No need to worry then ... the test from the lab used by KDM has been shown to have a low rate of both false positives and false negatives, in published research. It hasn't been duplicated independently, of course, but that's hardly their fault.

Is that a new paper? I'd be interested in the details if you've got them.

 

[msf]

I was talking about ´alternative Lyme´ a term I hadn´t heard before - perhaps because it isn´t a very useful or meaningful one?

 

[Valentijn]

Is that a new paper? I'd be interested in the details if you've got them.

It's the one I've already cited for you repeatedly in past conversations.

 

[Esther12]

It's the one I've already cited for you repeatedly in past conversations.

Did I say there was anything wrong with it? I can't remember you citing any rigorous blinded assessment of 'alternative' Lyme testing.

 

[trickthefox]

Many health officials as well as members of the CDC are starting to come out the woodwork and state there are times lyme diagnosis should be clinical as much as pathological due to the inefficiency of current testing. Just recently a paper was published by the very same scientists who for years denied the inaccuracy of the ELISA test, which calls for more sensitive testing, the public demand is working, either that or these researches can smell profit, either way, progress is being made toward more accurate lyme testing.

Even in the article the Mail published about me, the health official stated that diagnosis should be clinical in some instances. I have a clinical diagnosis, backed up with armin labs testing - which i must admit, i too am a little wary of, but I also have other biomarkers of an infection, and support from my NHS GP, as well as a rather rapid progressive worsening of arthritic and neurological symptoms not common of many of the people with M.E I've spoken too , and I've tried nearly every treatment proposed for M.E. with the exception of rituximab which i have my concerns about. So far the only thing that has offered significant relief is antibiotics which penetrate the CNS - which strongly, strongly indicates a bacterial infection of the brain. I know doxy can cause immunosuppression which might play a part - but the same thing happens with tindazole too, and the positive effects last about a week after cessation of the antibiotics, then gradually worsen, which would make sense with a bacterial infection that has had its numbers knocked down, but not eradicated, also when i take antibiotics which only stay in the gut like rituximab I don't get the same effect, which indicates the problem is systemic and not stemming from my micro biome.
I do appreciate that your advice is coming from a place of concern though

 

[msf]

Actually, it has always been a clinical diagnosis - it´s just that there is a lot of debate about which symptoms (as well as which tests) are used to establish this.

 

[roller]

re pulsing abx... i think this US doctor was disciplined for giving patients abx for a prolonged period.
perhaps thats why he is pulsing now?
apologies if this is a stupid thought, i may not have understood the matter.

 

[roller]

@trickthefox

i also like doxy and metro/tini, even though i cant say i have anything to laugh while on them.
doxy nausea, metro weird sensations, worst tinidazole, very weird in the head.
but ... they are 'good', does do a lot.

some questions:
a) is it possible to take doxy + metro/tini together (same days?) i read somewhere it might be counterproductive.
b) what was the longest period you have taken them?

perhaps, take into account, that doxy/metro/tini are effective for a loooong list of pathogens.
including flees/lice/mites.
i have a lot of mole/skin mark changes during the course...

doxy also penetrates the bones.

 

[roller]

user drass @ meirleir - takes them not together.

month 1 + 2 : 200mg doxy + 500mg clarithromicin
month 3 + 4 : 500mg tinidazol + 600 mg tetralysal
month 5 + 6 : bactrim forte x 2 + 1000 mg clarithromicin

3rd round of treatment by KDM, after the 2 first months on 200mg doxy +500mg clarithromicin and the 3rd and 4th months on 500mg tinidazol + 600mg of tetralysal now it comes:
Bactrim Forte twice a day + 1gr Clarithromicin Daily.

http://forums.phoenixrising.me/inde...appointment-with-kdm.38707/page-5#post-695730

i will miss either, when not taking daily.
i would like to take them regularly (doxy+metro/tini/similars)
no good idea ?

 

[Esther12]

I do appreciate that your advice is coming from a place of concern though

Good luck with whatever you do. Also, my criticism of a lot of 'alternative' Lyme practices is not remotely the same as assuming that 'mainstream' approaches are wonderful. There have certainly been problems with the way a lot of people with Lyme have been treated.

 

[trickthefox]

Actually, it has always been a clinical diagnosis - it´s just that there is a lot of debate about which symptoms (as well as which tests) are used to establish this.

Ah sorry msf, I should have been clearer in my definition, by clinical, i meant diagnosis based purely on symptoms rather than lab tests

 

[trickthefox]

re pulsing abx... i think this US doctor was disciplined for giving patients abx for a prolonged period.
perhaps thats why he is pulsing now?
apologies if this is a stupid thought, i may not have understood the matter.

I believe the pulsing is now done based on a lot of the current research that is coming out about lyme persisters. Certain antibiotics only kill lyme while they are active and reproducing, pulsing tricks them into coming out of hiding then killing them - if the levels of antibiotics are constant, they just remain in what used to be called 'cyst' form which has now been replaced with 'persister' form, only to come out again once the antibiotic has been stopped

 

[trickthefox]

@trickthefox

i also like doxy and metro/tini, even though i cant say i have anything to laugh while on them.
doxy nausea, metro weird sensations, worst tinidazole, very weird in the head.
but ... they are 'good', does do a lot.

some questions:
a) is it possible to take doxy + metro/tini together (same days?) i read somewhere it might be counterproductive.
b) what was the longest period you have taken them?

perhaps, take into account, that doxy/metro/tini are effective for a loooong list of pathogens.
including flees/lice/mites.
i have a lot of mole/skin mark changes during the course...

doxy also penetrates the bones.

To answer your questions, it is possible to take together, but in all honesty, I wouldn't undertake any antibiotic protocoll without a Dr who understands bacterial pathogens. I dumbly started persuing my own antibiotic treatment in the past to treat a blasto hominis infection only to end up with worse gut problems than I started with. I got rid of the parasite, but was left with way worse food sensitivities, so I'd be cautious

 

[trickthefox]

re pulsing abx... i think this US doctor was disciplined for giving patients abx for a prolonged period.
perhaps thats why he is pulsing now?
apologies if this is a stupid thought, i may not have understood the matter.

There have been many cases against Dr's in the US for prescribing long term ABX for lyme patients, but funnily enough a significant ammount of those cases stemmed from complaints from insurance companies...go figure...

The most famous case was the one against Dr Jemsek. One woman died whilst in his care, however details of the case are left out, the most important being that she was taking way more pain medication than she should have been. A lot of chronic lyme critics reference this case, Jemsek was suspended and made bankrupt. In my opinion he was brave to go back to treating lyme disease, when he could have easily gotten into any other area of medicine... Could be profit driven, but from hearing him speak, and the interviews he's done I feel he has a genuine concern for human life and the lyme epidemic in america

 

[roller]

I believe the pulsing is now done based on a lot of the current research that is coming out about lyme persisters. Certain antibiotics only kill lyme while they are active and reproducing, pulsing tricks them into coming out of hiding then killing them - if the levels of antibiotics are constant, they just remain in what used to be called 'cyst' form which has now been replaced with 'persister' form, only to come out again once the antibiotic has been stopped

yes, i think this is definitely true.
I also think tinidazole kills cysts.

I still have cysts (developed after metro, which i took only for 3 days previously), but one big disappeared after changing to tinidazole.
Not 100% sure that was the reason.
Others I still have or even got new.
I also wondered about giving a chance to 'uncyst'. But not as long as i still think there is die off...
(unfortunatel cant see a doctor)

 

[justy]

I think KDM does count as an 'alternative' practitioner, but realise that there will be some controversy over this label

Professor Dr. De Meirleir is a medical Dr, with a medical license and a medical degree. He is also a professor of physiology and internal medicine and teaches at the University of Brussels - a prestigious European university.

 

[Esther12]

Professor Dr. De Meirleir is a medical Dr, with a medical license and a medical degree. He is also a professor of physiology and internal medicine and teaches at the University of Brussels - a prestigious European university.

I don't think that matters.

 

[msf]

Ah sorry msf, I should have been clearer in my definition, by clinical, i meant diagnosis based purely on symptoms rather than lab tests

That was how I was defining it too - a diagnosis of Lyme has always been based on symptoms, due to the fact that the standard tests lack specificity and are not useful in early Lyme disease. The problem is which symptoms doctors see as ´Lyme symptoms´. I believe the IDSA only really recognise neuroborreliosis and Lyme arthritis (and perhaps Lyme endocarditis) as chronic sequelae of Borrelia, so doctors who take their line would only really look for these symptoms.