Question for friend with chronic lyme disease

[poodle...@netscape.net]

My friend has many of the lyme symptoms, including a rash, joints and
nerves that are acting up, unusual fatigue, and other common symptoms
on the lists, and was diagnosed with lyme a few years ago. She is
desperate, and doctors have done all the official tests and put her on
various short-term antibiotic therapies listed on the lyme websites
with no real improvement. When she questions them, they seem to know
even less than what I printed off for her from web searches a couple of
years ago.

Is there something very current written about lyme, and also is there a
place where she can learn about local lyme specialists without giving
out her private information to strangers--and having one contact her
out of the blue? Our local lyme support organization won't help her
beyond having a doctor contact her (she wants to get some solid
referrals). She lives near Washington, DC and Baltimore, MD.

Thanks.

[over...@hotmail.com]

Good luck finding a doctor who knows anything about Lyme. Anywhere.
Not sure what the situation is with local support group. Maybe they
detected something suspicious about your approach. Not clear to me why
she would not be willing to give any personal information. Over the
phone to a support group leader is a lot safer than posting anything on
the internet. Plus, people who won't say anything about themselves
could easily be trouble makers. If you don't understand this, you need
to get acquainted with the lyme politcal situation, as it will have
everything to do with the kind of treatment she can get and why she has
been undertreated in the past.

You might look at the www.lymeinfo.net website for solid info on lyme
and its coinfections.

This is not a good forum if you are a legitimate user, this one taken
over by trolls. Yahoo forum or lymenet would be a better place.

I am not sure why I bother answering these kind of posts, the people
never seem to come back and read/respond, and it is a waste of time in
that case.

[Yukon King]

over...@hotmail.com wrote:
>
> I am not sure why I bother answering these kind of posts, the people
> never seem to come back and read/respond, and it is a waste of time in
> that case.

We're not sure why you bother, either, Lou.

Well, that's nice, Lou...gosh, so sorry that some of your precious time
was taken.

Was it because you wanted to help someone?

Or did you want to hear someone say "thank you"? Two different things,
you know.

[Yukon King]

poodle...@netscape.net wrote:

> My friend has many of the lyme symptoms, including a rash, joints and
> nerves that are acting up, unusual fatigue, and other common symptoms
> on the lists, and was diagnosed with lyme a few years ago. She is
> desperate, and doctors have done all the official tests and put her on
> various short-term antibiotic therapies listed on the lyme websites
> with no real improvement. When she questions them, they seem to know
> even less than what I printed off for her from web searches a couple of
> years ago.

Yes, unfortunately, that is the "lot" of Lyme patients...we are dealing
with an 'emerging disease' about which a great deal is still unknown.

>
> Is there something very current written about lyme,

Not that I am aware of...that is, while I think awareness is growing,
there are no "watershed" breakthroughs that I have heard of.

and also is there a
> place where she can learn about local lyme specialists without giving
> out her private information to strangers--and having one contact her
> out of the blue? Our local lyme support organization won't help her
> beyond having a doctor contact her (she wants to get some solid
> referrals). She lives near Washington, DC and Baltimore, MD.

There is a culture of paranoia that has been fostered by some so-called
"support groups"...the "secret" culture of the LLMD...where you can't
say the doctor's name...but only his/her last initial.

This, of course, is complete NONSENSE.

And LAUGHABLE.

The people who have created this climate apparently never stop to
consider that this "secret" code only works if everyone understands who
Dr."B" really is.

And yes, INCLUDING...and ESPECIALLY the insurance providers.

Sorry...wish I had better news.

I have been dealing with it for six years now...and while I do still
have problems...I do think it gets better over time.

[Nutcracker]

over...@hotmail.com wrote:

> This is not a good forum if you are a legitimate user, this one taken
> over by trolls.

So who are the trolls then?
Or is everyone a troll here, according to you?

Note: this place cannot be taken over.

> Yahoo forum or lymenet would be a better place.

LymeNUT sucks too.

http://www.lymeinfo.net/directory.html

"WARNING: At some of the forums such as the Lymenet FLASH, dissenting
opinions can be censored. As a result you will not be able to receive
balanced information to make informed decisions, and you will not know
that useful info has been deleted without apparent cause. There are also
members who benefit from the sales of questionable products. Therefore,
LymeInfo encourages readers to seek out a diversity of opinion in order
to most fully inform themselves to make the best decisions possible."

> I am not sure why I bother answering these kind of posts, the people
> never seem to come back and read/respond, and it is a waste of time in
> that case.

Well apparently you are wrong. And Donna Jo also came back.

[poodle...@netscape.net]

Thanks for the lymeinfo link--I found some links there that I think
will help her at least make some contacts.

Since I didn't personally approach the local lyme support group, I'm
not sure what she said, but she is a retired elementary school teacher
and an excellent communicator, so I doubt if her approach was
questionable. The rep who answered the phone reportedly said the way
they operate is the sufferer provides personal info and then they pass
it on to a doctor who calls. This makes no sense--one can find a
dentist, pediatrician, etc. by seeing a list and ratings--but not a
lyme doctor!!! Another lyme site I found through google also had this
requirement, which I found strange.

Sorry this is a waste of time for you, because USENET is usually one of
my first targets after an initial topical search. She has no computer
and I do a lot of searches for her and my elderly relatives all the
time and usually find a lot of good information (on both USENET and
government sites for well-documented diseases). Just about all the
lyme sites I've found are dated and I found none that helps locate
doctors other than one that requested personal data just like the local
support group. I'll check yahoo next--thanks for the tip.

[poodle...@netscape.net]

YK,

It's actually frightening that one can find a dentist or pediatrician
with reviews--but not a lyme specialist. I guess with a relatively
recently discovered disease with no cure, the lawsuits are flying fast
and furious. That would certainly make a doctor want to decide which
patients to treat. This is evidently a very nasty disease, and people
are pretty upset when nothing relieves their symptoms. Very sad.

[Yukon King]

It is a complex situation. Some of the difficulty surrounding the
secretive aspects is a fear, some feel genuine, others believe
paranoid...of doctors, who treat with antibiotics beyond guidelines
established by the Infectious Diseases Society of America being
prosecuted or "persecuted" by state licensing boards.

The IDSA guidelines are incredibly conservative and seem to want to
treat everyone with a "one size fits all" mentality. The obvious fact
is, also, that Lyme disease, because it is localized...has potential
economic aspects to it...real estate values could be affected by its
presence in a particualr area.

There have been, not so much lawsuits...so much as professional
disciplinary measures against several prominent physicians who treat
Lyme disease beyond the recommended guidelines.

This, in turn, has fueled a climate of secrecy and mistrust within some
patient groups. A climate not unlike the prohibition era, and doctor's
offices are now where you have to say, "Joe sent me".( At my first
visit to a particular doctor...that was the first order of
business...to establish, "who done sent me").

The problem in perception is whether some of these doctors were
actually "set upon" because of their Lyme practices...or for other
reasons...business practices in some cases, that are...a disservice to
patients.

In any event, so far as your friend goes...I would think from a Lyme
patient's perspective...the really important thing is to be able to
find someone who is willing to treat BEYOND the recommended guidelines
with antibiotics IF necessary.

MY impression...based on my own experience...is that extended treatment
IS necessary in many cases.

Any delay in diagnosis and treatment...and I think the so-called
"guidelines" go out the window so far as that is concerned. You need to
treat until the patient no longer improves with antibiotics, in my
opinion.

That shouldn't be all that difficult to do in that area...and
www.lymnet.org can help you find a doc like that if you can't find
them through the local support group.

Sorry.