Re: knot_weed Was: New in here.request for help-

[Guest guest]

knot_weed:

I really appreciate your comments in various emails from yesterday, like the one

below. I am recently infected (i.e., less than a year) and by far the worst

part of this whole experience for me has been trying to sort out the various

agendas of all parties involved with this disease. I've found that most of the

groups who support the diagnosis of " chronic lyme " have only one goal -

advocating long-term antibiotics as a cure, and protecting the docs who

prescribe long-term antibiotics. And then there are all the doctors who seem to

have a commercial or egotistical interest in promoting a particular type of

treatment, when, as you say below, NOTHING is proven. It's just as bad on the

other side of course (IDSA etc.). But I just wish there was a bit more honesty

and cohesiveness in the groups that supposedly support patients with chronic

lyme - and that would promote real research in the manifestation of this

disease, for me that would be figuring out whether this is an immune problem

(i.e., the body is fighting an active infection), or auto-immune type of

problem, and trials of treatments that pass peer-review.

For example, I saw one doc who prescribed me with 5 months of antibiotics. Last

he heard I was doing well. But I have not seen him since - does he consider me

cured? One of his success stories. This same doc has published an article on

the results of his treatment, I think it was 20% cured, 70% showed improvement,

10% no improvement. To me that doesn't sound much better than placebo.

I found myself on website the MS society, envying people who had these folks as

their support group. Yes I know there are controversies with MS, diagnosis,

treatment, etc., but the scope and clarity of the information provided there is

amazing - everything from excercise plans, how to deal with work and a chronic

illness, mental issues, etc.

Anyway, thanks again for your comments, and your research/reading on Lyme - I

really appreciate you and your comments as a resource.

> >

> > as Buhner says in his book that they have 95% success in the treatment.

>

> success in this case is 'improvement', NOT cure. Read what he has said about

this on the Planet Health pages and elsewhere. The 5% with no success are people

who do worse on the protocol. Even someone who sees a very small benefit is

counted as 'success'. I don't object to that because if you are very ill, every

small improvement is good.

>

> I have read elsewhere that about 25% are supposed to be cured completely with

Buhner protocol (my guess is that most of these are people who were ill for

shorter period, and probably a significant group who did not have Borrelia

infection at all), about 50% show good improvement but no full cure (e.g. have

to stay on the protocol) and about 25% have little or no improvement or adverse

outcome.

>

> These success numbers are similar to those from many other treatments (e.g.

ABX).

>

> Only a few alternative treatments claim close to 100% cure rate (for those who

believe in magic, IMHO). E.g. in my country bioresonance practitioners (a bit

similar to Rife in the US) claim 100% cure rate from Lyme. Despite this claim, I

haven't been able to find ONE example of someone with proven Borrelia infection

who was fully cured with this treatment. Often it works like this: the patient

gets ten very expensive sessions, and if they don't return after that they are

assumed to be 100% cured. It's that easy ...

>

> P.S.: I know that a large chunk of the 'ABX cure for Lyme' stories are

similar, the docs use the standard treatment and never check the condition of

their patients in 1, 2, 5 years. And if they still have problems after a year,

it cannot be Lyme - by definition. Even a lot of the official medical research

works like that.

>

> > Hope all will calm down at least a little so that I can exist normally, or

at least like before treatment.

>

> Don't get me wrong. You CAN improve a lot, things can calm down. But if you

have been ill for 1-2 years (in your case this is not too obvious to me, as most

of your earlier symptoms are not necessarily due to Bb or Bart) getting back to

your condition before you got infected is a stretch. If only because treatments

tend to take years, and during these treatments you age, which statistically

introduces new problems.

>

[Guest guest]

>

> I've found that most of the groups who support the diagnosis of " chronic lyme "

have only one goal - advocating long-term antibiotics as a cure, and protecting

the docs who prescribe long-term antibiotics. And then there are all the doctors

who seem to have a commercial or egotistical interest in promoting a particular

type of treatment, when, as you say below, NOTHING is proven.

yes, I worry about this too.

I try to say mute regarding ABX treatment in most of the discussions. This is

also because ABX is extremely controversial in Netherlands because of its use

for farm animals (my country uses 5-10x more ABX for farm animals than for all

the citizens; by trying to clamp down ABX for human healthcare, they want to

give the impression that they are very conservative with using ABX, so that the

pig farmers can continue their bad practice. Again, this is politics, not

science.

ABX is an option to try as long as we have nothing better. But I'm pretty sure

even good research will show that longterm ABX are hardly effective for curing

most chronic lyme cases. ABX can make patients feel better, temporarily, e.g.

because most ABX have anti-inflammatory properties (most MD's don't know this

....).

Rocephin also has a strong effect on glutamate metabolism, which means it can

strongly influence (help with) all kinds of brain/mood disorders.

> figuring out whether this is an immune problem (i.e., the body is fighting an

active infection), or auto-immune type of problem, and trials of treatments that

pass peer-review.

yes, there are many very different explanations and most of them are totally off

the radar currently.

> For example, I saw one doc who prescribed me with 5 months of antibiotics.

Last he heard I was doing well. But I have not seen him since - does he

consider me cured? One of his success stories. This same doc has published an

article on the results of his treatment, I think it was 20% cured, 70% showed

improvement, 10% no improvement. To me that doesn't sound much better than

placebo.

yes, fully agree. I think this is how it often works.

> I found myself on website the MS society, envying people who had these folks

as their support group. Yes I know there are controversies with MS, diagnosis,

treatment, etc., but the scope and clarity of the information provided there is

amazing - everything from exercise plans, how to deal with work and a chronic

illness, mental issues, etc.

MS was recognized as an official disease much earlier so they had a head start.

As you probably know, some (many?) cases of MS are actually lyme. But don't try

to mention that on a MS website, people will get very angry. They have MS, not

Lyme - even if they test positive for Borrelia. Nobody really knows what MS is

either, what causes it.

I would love to see these overlapping diseases (Lyme, MS, ALS etc.) studies

together, that would get us somewhere. But the pharma industry prefers to make

separate pills for all the different 'diseases', far more profitable And

most of the patient groups don't seem to want such research either, they really

cling to their own diagnosis.

> Anyway, thanks again for your comments, and your research/reading on Lyme - I

really appreciate you and your comments as a resource.

thanks, I'm happy to contribute something where I can.