"Single dose doxycycline 200mg if: <72hr in epidemic area".

AND..

"Patients with chronic fatigue, joint stiffness &/or muscle aches should not have
Lyme disease serology & should not receive Lyme disease treatment".

Soooooooooooooo.. take it with a grain of salt.. but also note...

They suggest treating for THREE months for Bartonella!

But they think Lyme can be controlled with ONE dose of doxy? Ahhhhhhhh......

HELLO!!!

Maybe we should SKIP the Lyme tests and just see how many of us have Bartonella so we can get treated?

Oh.. it might interest you to know...

Hopkins (Inf. Dis.) is no longer seeing Lyme patients!

Darn... that means SOME folks who already know they have Lyme MAY stand a chance!

Of course that is only MY opinion...

See this site for their new Bartonella guidelines:

http://www.hopkins-abxguide.org/

You said..

"What happens if you call and want to make an appointment."

They tell you they don't take Lyme patients.

Actually.. from my seat here.. that is some of the BEST news yet!

That means several things..

1. Those who KNOW they have Lyme will be spared being treated like PIGS by going there. The ducks there (some of the locals call them devils) continually un-diagnose folks and give them the "no Lyme" or "you are cured" lectures.. and then prescribe antidepressants and tell them to "get more exercise" if they continue to complain. This is devestating to so many folks who are VERY ill and need help. It is a sin and a crime to allow that to continue. I am THRILLED they will no longer be hurting folks who KNOW they have Lyme.

2. The local ducks, who try to refer folks there to have the "Hopkins" name behind them to confirm their "Anything But Lyme Syndrome" garbage pail diagnosis, will be STUCK.

They will actually have to THINK for a change about what they can do for the growing numbers of folks who have Lyme and need help. They won't be able to "pass them off" to a premier duck motel.

Maybe THEN we can begin to educate the local ducks and find some decent ones here. My guess is over 95 percent of folks with chronic Lyme in this state have been negatively affected by Hopkins ducks or those trained there. My guess is that over 90 percent of the folks with chronic tick borne diseases are going out of state for help... and are improving. That is sad... no doubt.

3. Insurance companies who once relied on Hopkins to "undiagnose" Lyme patients and present them with a new and improved cheaper diagnosis (or none at all) will have to THINK about how they are going to fight patients now that Hopkins won't play games with them anymore.

Boo hoo... Hopkins won't play fair. Yep.. I can hear the whines and cries from the insurance companies... and the squeeking of the rusty pocket books being pried open again.

4. Precious time and money wasted testing folks there for many other problems... only to get a "no treatment needed" response... will stop. These Lyme folks can then put pressure on GENERAL doctors to actually DO THEIR JOBS!!! Darn.. ya think they can handle it?

xxxxxxxxxxx

There are other reasons this is a good thing... but I'm short on time and I am too busy dancing on the ceiling about this good news to write them all out now.

But my question is WHY are they not taking Lyme patients. Hmmmmmm????

I have some "guesses".. but nothing I can confirm yet.

1. They are being sued for botching up so many folks and causing soooo much damage? I can only imagine all of the legal problems they could be having about now.. after MANY years of dragging feet and being plum STUPID.

They can no longer deny they are WAY off base and even a thick head would know better.. or even a two year old. They can't possibly stay afloat going the way they were.

And... as we continue to say... "We are going to win!" It is coming true.

The pressure we are putting on them is working... finally. They are being exposed now for the STUPID things they have been saying or doing and it has been in the local papers so the whole state is seeing it for what it is... with their own quotes being used to hog tie them into compliance.

Example... A lady came running up to me in the gas station one day and was asking me what to do to help her grandma.

Her grandma had a tick bite... a Lyme rash.. and was ill. She went to Hopkins for help. They gave her ONE dose of doxycycline and refused to provide any more treatment.

The lady wanted ME to help her grandma. I did.. but I am NOT a doctor and I can't keep this up.. I just can't keep doing this. We need help here in this Hopkins state... and across the country. Us Lyme folk are too sick and too tired to do what we need to do to survive this illness.. and do THEIR jobs too.

Now.. we have to worry about those who go there and don't already know they have Lyme.

I refer to Hopkins as the Bubba Gump of diagnosis.

There are many things someone can have... fried Lyme, Lyme fritters, Lyme pie, Lyme stew, Lyme Creole, blah blah blah...

My observations show me that whatever the "flavor of the month" is.. that is what is being misdiagnosed.

For example.. there was a time when many folks were being diagnosed with Parkinsons round here. Hopkins had a money grant for Parkinson's at the time.

Then it appeared there were a bunch of folks who had Lou Gehrigs disease popping up all over. And what do ya know.. they had $$ for THAT disease.

Yep.. flavor of the month.

Sad.. but that is what I am seeing.. and I rarely keep MY big mouth shut.

Anyhow.. the family wants their supper... gotta run.

And of course... all of the above is only my opinion.

Thank you for this information.

Lisa, I would just like to add my little opinion here...not ALL ID docs are ignorant to lyme...mine isn't.

I KNOW he is in the minority...but, I just hate to see blanket statements thrown around...sorry.

I think you have EVERY right to do what you are doing to seek some answers...I certainly GET that!

I wish you well in this persuit, but, I really don't think it quite accurate to say that ALL ID docs are in some sort of conspiracy here.

Having said that...please let us know if there is anything we can do to help you, OK sweetie?

Love,
M

Good to see you! I haven't been around much... so it is nice to see "old" friends.

Tempe..

Silly me. Sorry. Here is the info... but it may not print out well??

Recommendations for Treatment of Human Infections Caused by Bartonella
Species :

This is a review by authorities on the subject from Marseille, France; San
Francisco; Lima, Peru, and Texas.

The authors review multiple types of infections caused by Bartonella species including clinical manifestations, laboratory testing, and recommendations for treatment based on in vitro sensitivity tests and clinical trials.

The Bartonella spp are facultative intracellular organisms that are cultured with cell culture or axenic media with blood-enriched agar. They are fastidious and produce colonies that can be detected only after 1-4 weeks of incubation on blood agar.

One of the most important developments in recnt years is that B. henselae was
successfully recovered from blood and lymph nodes of patients with cat-scratch
disease (CSD) in 1992 with confirmation by PCR and serology . Nevertheless, the
organism is rarely detected by culture from lymph nodes and the usual method to
establish the diagnosis is with PCR assays .

Members of the genus Bartonella include multiple species that cause diverse
conditions that are acute or chronic and produce either vascular proliferation or
suppuration.

For example, B. henselae may cause focal suppuration in CSD in
immunocompetent patients and angioproliferative disease as bacillary angiomatosis in immunosuppressed patients.

The first successful isolation was reported in 1999 with the recovery of B. bacilliformis in Carrion's disease which is also known as Oroya fever and chronic verruga. Since then, a variety of different species and conditions have been described as summarized in the following table:

Conditions Agents
Carrion's disease (Oroya fever) B. bacilliformis

Cat scratch disease B. henselae

Bacillary angiomatosis B. henselae

Bacteremia B. henselae, B. quantana, B. vinsonii ss arupesis

hronic bacteremia B. quantana

Trench fever B. quantana

Neuroretinitis B. henselae; B. grahamii
Endocarditis B. henselae; B. elizabethae, B. vinsonii ss arupesis

Peliosis hepatitis H. henselae

Sensitivity of these organisms to antibiotics is tested in vitro either with co-culture using eukaryotic cells or an axenic media, but these techniques are difficult and do not necessarily correlate with clinical trial results.

The authors present their
recommendations for antibiotics based on clinical trial data with recommendations
using the IDSA format to rank the strength of the recommendation and the quality
of the evidence:

Disease Treatment (adults) Rank*
Cat Scratch Disease No recommendation (usual case)

Extensive adenopathy-azithro 500 mg x1, then 250 mg qd x 4 BI

Retinitis Doxy 100 mg bid + Rifampin
300 mg bid x 4-6 weeks AII

Trench fever Doxy 200 mg/d x 4 weeks + gent
3 mg/kg/d IV x 2 weeks AI

Bacillary angiomatosis Erythromycin 500 mg qid x 3 mo or Doxy 100 mg bid x
3 mo AII
AII

Peliosis hepatis Erythro 500 mg qid x 4 mo
Or Doxy 100 mg bid x 4 mo AII
AII

Endocarditis
1 Empiric Gent 3 mg/kg/d x 14d +
Ceftriaxone 2 gm/d x 6 weeks
� doxy 100 mg bid IV/po x 6 weeks AII
BII
BII
2 Culture pos. Doxy 100 mg po bid x 6 weeks
+ gent 3 mg/kg/d IV x 14 d BII

Oraya fever Chloramphenicol 500 mg IV/po qid
x 14d + betalactam
or ciprofloxacin 500 mg bid x 10d AII
BIII

*A = Good evidence to support use; B = Moderate evidence to support use
I = Evidence from properly controlled clinical trial; II = Evidence from well designed
trial without randomization from cohort studies or case controlled studies; III =

Opinion
Comment: This is an extraordinary summary of complicated information from great
authorities in the field of Bartonella
By John G. Bartlett, M.D., posted 07-09-2004

My doc speaks regularly...sometimes internationally, so, yes...he IS outspoken for the cause...and I DO know that I have a good one !

But, I think it a foolish bet to ask me to name 5 ID docs who treat lyme...I think you will need your money for the fight you are up against

M

Good to see you too! But I am 1/2 way afraid to talk to you!

There ain't many folks I know who can have a squirrel fall on their head, be bit by several cactus, and... and.. who eats green sandwiches on purpose!

But hey.... that is what we like about you...

You are lovely... just plain lovely.

Lisa..

You are right. Most ID ducks are no smarter than a barnacle, with a personality to match.

Mountain Girl does have a good one.. but most are TOADS!

And that was an insult to toads!

I know you are frustrated about the way things are going.. but perhaps you might direct the responses to someone who actually cares about the current situation and then hopefully we can make steps to improve it??

Hopkins is a lost cause at this point. I wouldn't waste my breath or time on them. Kinda like fighting old butthead on that Quackwatch thing. Once a butthead.. always a butt head.

You said..

"I think we should write a bunch of letters and expose what is going on here."

If you could hold up on that idea for the time being.. it would REALLY REALLY fit better in the plans we are working on here behind the scenes. They are being investigated as we speak... and are under a close watch.

Might I suggest a good route to take would be to start contacting your local county and state health departments and ask that they begin an active campaign to educate the ducks. I am sure you have enough good literature available to back up your statements.. and truth is... ducks just WON'T listen unless they are forced to. And they refuse to listen to US.

The county and state health departments are where the ducks expect to get their info from.. so getting them to do their jobs would be a great starting place.

Fighting ducks by informing the media could backfire.. so we all need to think things through before we act. I have seen disasterous things happen in years past with this media approach.... so I tread lightly until I am on solid ground.

And right now.. I LIKE the idea they aren't hurting more folks and are out of the Lyme business. It is giving us a break out here where we really need one.

This is actually better than a restraining order.. or locking them in a train car and shipping them off to West Virginia. This, to me, is a dream come true... and I would LOVE to see them take a break and move onto some other field of interest.

After all.. the fewer idiots out there.. the better for ALL of us. I am sure you agree.

And by the way... how the heck are you doing? I am sorry I don't get much news about everyone lately. I am so far behind I think I will never catch up.

Hope you are doing well.

PS... We actually have doctors here who require a patient to fill out an application/resume form before an appointment is even considered to be scheduled.

IF the patient is approved by the doc himself... after he reads your paper work... with all the medical history of you and your family.. THEN they consider accepting you as a patient or not.

Now that doesn't seem right to me... but they get away with it.

Yes.. it is a sad state when GARBAGE like that happens.

Of course all of the above is my opinion.

FYI- I went to JH a couple of times in 2002 to the Diabetes (to see if I had a diabetes problem), and to Rheumatoloty. The woman in Rheumatology Dr. Z said that since I didn't have more than5 bands in my West. Blot and my ELISA wasn't high enough, that I didn't have lyme. And my ANA wasn't high enough to have lupus. I had to send her fedex my complete medical records from all phyiscans from the past two years, inculding xrays, etc. She said that I was just too fat and if I'd exercise more, I'd loose weight and feel better w/more energy. I wish I had a tape recorder. I'd never go to them or M. again.

quote:

---

Originally posted by Tincup:
Hey hey Mountain Girl..

Good to see you too! But I am 1/2 way afraid to talk to you!

There ain't many folks I know who can have a squirrel fall on their head, be bit by several cactus, and... and.. who eats green sandwiches on purpose!

But hey.... that is what we like about you...

You are lovely... just plain lovely.

Lisa..

You are right. Most ID ducks are no smarter than a barnacle, with a personality to match.

Mountain Girl does have a good one.. but most are TOADS!

And that was an insult to toads!

I know you are frustrated about the way things are going.. but perhaps you might direct the responses to someone who actually cares about the current situation and then hopefully we can make steps to improve it??

Hopkins is a lost cause at this point. I wouldn't waste my breath or time on them. Kinda like fighting old butthead on that Quackwatch thing. Once a butthead.. always a butt head.

You said..

"I think we should write a bunch of letters and expose what is going on here."

If you could hold up on that idea for the time being.. it would REALLY REALLY fit better in the plans we are working on here behind the scenes. They are being investigated as we speak... and are under a close watch.

Might I suggest a good route to take would be to start contacting your local county and state health departments and ask that they begin an active campaign to educate the ducks. I am sure you have enough good literature available to back up your statements.. and truth is... ducks just WON'T listen unless they are forced to. And they refuse to listen to US.

The county and state health departments are where the ducks expect to get their info from.. so getting them to do their jobs would be a great starting place.

Fighting ducks by informing the media could backfire.. so we all need to think things through before we act. I have seen disasterous things happen in years past with this media approach.... so I tread lightly until I am on solid ground.

And right now.. I LIKE the idea they aren't hurting more folks and are out of the Lyme business. It is giving us a break out here where we really need one.

This is actually better than a restraining order.. or locking them in a train car and shipping them off to West Virginia. This, to me, is a dream come true... and I would LOVE to see them take a break and move onto some other field of interest.

After all.. the fewer idiots out there.. the better for ALL of us. I am sure you agree.

And by the way... how the heck are you doing? I am sorry I don't get much news about everyone lately. I am so far behind I think I will never catch up.

Hope you are doing well.

PS... We actually have doctors here who require a patient to fill out an application/resume form before an appointment is even considered to be scheduled.

IF the patient is approved by the doc himself... after he reads your paper work... with all the medical history of you and your family.. THEN they consider accepting you as a patient or not.

Now that doesn't seem right to me... but they get away with it.

Yes.. it is a sad state when GARBAGE like that happens.

Of course all of the above is my opinion.

---

No.. sorry... I don't think I saw that post about the disablity. I will look for it and get back to you.

I know one thing...

You do sound VERY frustrated.. and for a good reason. I get that way too... as you know. It is hard to contain the anger sometimes.

Yes.. I too wish that more were being done nationally.. but with everyone involved being so sick themselves.. it is hard to find help and keep folks available to do things. And... much to MY dismay.. the wheels of justice move VERY slowly.

I do KNOW that the folks behind the scenes are doing MUCH more than we will ever see.. and that they are worn to a frazzle.

They are to be praised for the hours they put in to help all of us get the help we need. Without them we would still be sitting down to the table with Fred Flintstone and Barney.

If you care to... maybe use some of that frustration energy to volunteer to help them. I know YOU know the in's and out's of the disease MUCH better than most and I am sure someone could use your help.

But we really need to try and keep the frustration from setting us off.. which I am guilty of quite often.

Heck.. I think Ellen Lu has an attack everytime she sees my feathers get ruffled. She has to watch me like a hawk, gag me, threaten me, and hog tie me so I don't spout off and do things that will actually hurt the efforts.

I mean well.. but I am NOT experienced in what they do.. and I tend to cause them problems when I start doing stuff on my own.

I wish for you some peace right now. But do put that energy to good use while it is fresh and you are able.

You already help so many folks... which I admire... but if you have more to give... maybe volunteer to help them?

Ok.. believe it or not.. it is after 2 AM and a storm is brewing outside. I have to shut windows and then get to bed.

I hope things start smoothing out for you... I really do.

Night night...