quote:

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Originally posted by firepipersnurse:
good luck, and keep seeking ms support, i'd hate to see you forgo your initial diagnosis for a wild goose chase of years of antibiotics.

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quote:

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Originally posted by firepipersnurse:
they don't post names because they don't want anyone to really know they ask for cash.

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quote:

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Originally posted by Kawai:
He put me on several supplements, an antioxidant, and 6 weeks of antibiotics. After 6 weeks he was surprised that there was no change and felt that the antibiotics were being blocked by something with my liver. So he set me up on a 28-day detox program and then will restart the antibiotics.

I know a Lyme diagnosis is much better than MS, and I'm just being cautiously optimistic.

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So you've only had 6 wks of abx? That is not enough to tell what is really going on. Please continue your treatments...and maybe you need to find another LLMD. I'm not sure.

I'll PM you.
 

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Posted by lymie tony z (Member # 5130) on :
 
Kawai,

Here's the deal....whenever ducks don't know what causes your symptoms they call it an immune problem and proceed to give you immunosuppressant drugs...prednisone.

That's why your immune system is malfunctioning at present or I miss my guess...and I'm a pretty good guesser.

There IS literature out in cyberspace somewhere that attributes MS symptoms and MS the disease to spirochetal infection. Lyme is borelia burgdorferi SPIROCHETE! and there are reported 300 different strains...

The "LLMD" "ALTERNATIVE" doctor you have chosen may indeed be a good one...maybe not.

Personally I was first diagnosed with MS and ALS among other things...and what I REALLY had was LYME>

With the MS treatments...ya kinda gotta ask yourself....

How's that working for ya??

If there is another viable,verifiable(western blot positive) alternative to suppressing your immune system and possibly getting rid of an infection affecting your brain/cns functions and realizing possible remittance of your MS symptoms...

Why not!?

I do not know of ANY REAL LLMD's that would give you a false or Missdiagnosis for lyme disease as the two I've seen over the years test for possibilities of about everything else...

Make no mistake my friend...a diagnosis of lyme is not NOT a bed of roses.

These LLMD's have to grab a handful of abx's and throw them at the dartboard that is your particular strain based on little or no research other than their own or what they have been able to glean from their LLMD collegues.

And monitor each of us INDIVIDUALLY...It's that tough of a disease...

I personally won't touch another anti-inflammatory(immunosupressant any stronger than advil) for the rest of my life!

The decision is ultimately yours...if it were my own child...I would give the advice of giving this a try...that's how strongly I feel.

That's how confident I am about REAL LLMD's and how conversly my feelings are toward mainsteam medicine the CDC and the IDSA....

Your choice my friend....
zman
 

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Posted by Lymetoo (Member # 743) on :
 
Did you see this, Kawai??
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=048495

Was your Igenex test positive??
 

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Posted by James H (Member # 6380) on :
 
It took me well over a year on ABX before I started to see real, consistent improvement in how I felt and could function.

Aside from getting a difficult and intrenched infection under control, there is damage that takes time to heal. It all takes time.

Antibiotics can only do so much by themselves. Your body also needs all the supportive help in the form of healthy lifestyle, diet, clean environment, etc. to get over this. It is really good that you have a Dr. who apparently considers the other aspects of the equation too.
 

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Posted by Lymeblue (Member # 6897) on :
 
Theere is a fishy smell here......

Kawai...I know hundreds of people diagnosed with MS and doing well once they were diagnosed and treated for lyme.....

There are studies sugesting MS is one of the most aggressive strains of the lyme bacteria...

Lyme or Borrelia has more than 300 strains....my lyme is different from yours and other lymenetters...some would get diagnosed with ALS, CFS, Fibromyalgia....an many other funny "syndromes"......
 

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Posted by firepipersnurse (Member # 9637) on :
 
if you've had ms for 20 years is the treatment working? sometimes if antibiotics aren't making you feel better it's usually a telltale sign it's not lyme. hopefully you'll get to the bottom of it soon.

good luck
 

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Posted by TerryK (Member # 8552) on :
 
firepipernurse,
The reason most LLMD's don't accept insurance is because the insurance companies essentially own the doctor's they contract with. This means they dictate the treatment that a patient can receive. This is not acceptable if one wants effective treatment for lyme.

If you want to go to someone who accepts insurance, feel free to go to your average duck who must tow the insurance company line. Don't expect to get well.

Insurance companies dictating diagnostic and treatment guidelines does not only apply to lyme either. I've had my doctor tell me he wouldn't run a particular test for bone density (even though I had good reasons for needing it) because the insurance company would not allow it.

I'm sure there are some who call themselves an LLMD who really aren't and there may be some that are in it for the money but the great majority are good people who are trying to help sick patients that no one else has the guts to step up to the plate and help. They risk their license for that and frankly, I'm tired of the other side casting aspersions about their motives. They could take on much easier cases, spend 15 min in an office visit, not risk their license and make just as much if not more money for a whole lot less aggravation!!
Terry
 

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Posted by Sojourner (Member # 9424) on :
 
Kawai,

If your so called LLMD did not discuss with you that treating long standing Lyme disease manifested as MS is a long slow process with many ups and downs, than you should seek a true LLMD because you currently don't have one.

Firepipernurse,

Is your planet a nice pleasant place to live? Your statements were really, "Out of this World." It is truly insulting that you would suggest someone with a Lyme diagnosis only stay on MS meds that are very ineffective and have proven to be downright dangerous--think Tysabri.
 

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Posted by mlkeen (Member # 1260) on :
 
It took ten months for me to see improvement on the RIGHT abx. I had co-infections that did not show up right away that were not adressed by the first abx. Sometimes the dose is too low to be effective.

A llmd who treats both is ideal. Some MS has an infectious trigger, so some folks are helped with abx.

It took 3 years of the right treatment to get well, this was after another 3 years of finding the right combo.

The kicker is treatment for Lyme and co-infections and MS is still experimental. What works for some does not work for all.

I don't know much about treating MS, is there more to it than steriods for the symptoms? Sorry that I'm totally ignorant about it.
 

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Posted by charlie (Member # 25) on :
 
....somebody evidently doesn't know if their name is karen or kathy, in which case they shouldn't be trusted with a wheelbarrow, much less a computer...


 

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Posted by nancyb (Member # 10154) on :
 
What antibiotics and at what dosage were you put on? This may be a reason as to why nothing has changed yet.

I would be very wary of a "LLMD" that puts you on abx for 6 weeks and is surprised that you haven't improved.

I have never heard of something in the body that blocks abx and that 28 days of detox is needed. What is that 'something' he is proposing is the problem?

I presume this doctor is making money from the supplements and detox program?

What's that noise? Is that a bunch of quack quack sounds I am hearing?

Be careful of a wild goose chase that lead you straight to a duck.

Sorry about my pessimism, but there are just too many people out there that take advantage of others - and it's certainly not limited to the medical profession.
 

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Posted by TNJanet (Member # 10031) on :
 
Firepipersnurse:

If you ARE Piper's nurse he or she ought to fire YOU on the spot.

The answer you gave to what I hope was a legitimate question by a person sincerely looking for answers was disturbing and totally inaccurate!

Except for Karma, I would wish you a nice frolic through Summer fields in any lovely rural US area, whereupon little Lymies would make a picnic out of you and your offspring and your offspring's offspring.

And I would like to be working for your insurance company at the very instant you called to beg that your treatment for Lyme be covered.

We are all on edge here at LymeNet because we are discovering our rights as patients are being eroded or simply ignored.

Honestly, I hope you NEVER know the angst or suffering of just one of us. And your statements regarding LLMD's prove beyond a doubt that you are not ONE OF US!

Everyone has his or her opinions. Why not take yours back to your third grade teacher where you belong!

GOOD GRIEF!
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by charlie:
....somebody evidently doesn't know if their name is karen or kathy, in which case they shouldn't be trusted with a wheelbarrow, much less a computer...

---

 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by firepipersnurse:
kathy

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quote:

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Originally posted by Boomerang:
lol......that's too funny.....the poor lady doesn't even know her name......

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Must be the LYME in her brain, ya think?
 

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Posted by Cobweb (Member # 10053) on :
 
ooooo this is exciting- I think our MOPS have snuffed out someone.

as for "the poor lady doesn't even know her name..." Maybe that's because she/he/it may truly have Lyme Disease!

And isn't paranoia a sign of neuro lyme?

So-the intrigue continues...

At least I know my name-it's Cobweb or is it Carol B or maybe it's CarolcobweB ? Where am I?

trivia question-what is a MOP ?
 

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Posted by Cobweb (Member # 10053) on :
 
Lymetoo- you're too quick for me !
 

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Posted by groovy2 (Member # 6304) on :
 
Hi All

My vote is Firepekkernurse is a Wako-

Firepekkernurse wrote me a perty nasty PM today--

Folks like this get Real Brave on the
internet -- punk --

If Karma is true -
Firepekkernurse is not going to be
having much fun soon --Jay--
 

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Posted by Michelle M (Member # 7200) on :
 
Firepipers Nurse always has an encouraging word for all!

When she herself was new to LymeNet, I recall giving her detailed help over and over again, only to have her completely ignore it. In other words, she actually LIKES the certainty of whatever her present "diagnosis" is, and has no interest in finding out anything that might contradict that. No matter how much the evidence might be in favor of that.

I know someone else like that. She claims she has "MS." I talked her into an IGeneX test after begging her for months (endemic area, many tick bites, she's now bed-bound, can barely read). Well, guess what? She's CDC positive. But guess what? Surprise: She refuses to treat. Know why? Doesn't want to jeopardize her "diagnosis" of MS for disability purposes, even though she knows it's the wrong diagnosis.

Many of us had MS diagnoses prior to lyme being properly diagnosed. I had multiple (11) brain lesions and abnormal evoked potentials. I was a pretty sick puppy. However, I also had a recalled tick bite and EM rash and many other symptoms. I read up on lyme, came here, got a good referral, and got tested because my idiot neurologist refused anything but an ELISA.

When I met my LLMD, I told him "Throw me OUTTA here if I actually have MS and not lyme, please!"

They diagnosed me clinically before even seeing my test results, which were CDC positive.

I turned out to also have babesia WA1, making recovery a kind of long journey, but WELL worth it.

Had I not continued to question my "diagnosis," I cannot imagine where I would be right now.

Ignore the slam at lyme docs -- believe me, they could have MUCH easier lives in any other specialty than one where their license to practice medicine is constantly in jeopardy.

I was a full six months into treatment before seeing a glimpse of daylight, and even after that, it was up and down (babesia WA1). So don't think it will be fast. But DO make sure you have an LLMD that's been recommended by others as a good one and one who more or less follows ILADS Guidelines, with room for variations of his own.

Then hunker down and start getting better. And post often!



Michelle
 

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Posted by lymie tony z (Member # 5130) on :
 
This is amaaaazing....

first we get KIWI and then we get a lady that can't remember her name...

Me thinks there's something rotten in denmark.....

D.E.B.
 

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Posted by Robin123 (Member # 9197) on :
 
Kawai -- fyi, I've been reading the lowdosenaltrexone site for awhile -- folks with MS take it and swear by it. You can read more about it at www.ldninfo.com. Also, people without MS take it too and that's why I've been reading the site comments. It raises endorphins and boosts the immune system.
 

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Posted by cantgiveupyet (Member # 8165) on :
 
hmmm carol B/cobweb is MOP, moderator on patrol.

just a guess...its still kinda early in the day for me.
 

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Posted by treepatrol (Member # 4117) on :
 

quote:

---

Originally posted by firepipersnurse:
hi there,
sorry that your going through such a hard time. but if you've been diagnosed with ms for 20 years and antibiotics are not working i'd go with the ms and continue treatment.

llmd do not accept insurance and there is a reason for that, many llmd would never tell someone they don't have lyme because they would lose money that's why it is such a clandestine situation when you are seeking a llmd, they don't post names because they don't want anyone to really know they ask for cash.

good luck, and keep seeking ms support, i'd hate to see you forgo your initial diagnosis for a wild goose chase of years of antibiotics.

firepipersnurse
Frequent Contributor
Member # 9637

posted 20 October, 2006 07:03 PM
--------------------------------------------------------------------------------
if you've had ms for 20 years is the treatment working? sometimes if antibiotics aren't making you feel better it's usually a telltale sign it's not lyme. hopefully you'll get to the bottom of it soon.

good luck

kathy

---

Those are both wrong answers whats up with that you herxing???

THey need tested by a good LLMD and ms is most probally Lyme related its deffinatley one of the infections that accompanie ms.

Read this clip
96. Steiner G. 1954 Morphology of spirochaeta myelophthora in multiple sclerosis. Journal of Neuropathology, 13:221-29.P


Four cases of multiple sclerosis, including the case to be reported, elicited abundant numbers of specific spirochetes in the central nervous system to warrant the publication of this paper.


...Morphology and Polymorphism of Spirochaeta Myelophthora: Loops, incomplete, nearly complete or totally complete rings are occasionally seen...


The limited polymorphism of micro-organisms is nothing unusual in microbiology. Especially in old cultures or in chemically and antibiotically treated cases
micro-organisms very often exhibit bizarre forms.
...Classification: ...


What can be said now, with all reservation, is that the spirocheta myelophthora, taken from its morphological appearance in fixed central
nervous system tissues, seems to belong to the genus borrelia of the spirochaetales, family of Treponemataceae.
...Reproduction: ...In multiple sclerosis, as in other chronic spirochetal infectious diseases, there is no continuous reproductive activity of the organisms.


Their propagation may occur at regular or irregular intervals of time....The first fact is the presence of enormous masses of extracellular and intracellular argyrophilic granular bodies in recent plaques of multiple sclerosis.


This is nothing unusual in comparison with other acute or chronic spirochetal diseases, such as relapsing fever and syphilis... If the granular bodies in multiple sclerosis are developing from broken-up spirochetes, and there is much evidence for it, the possibility of previous presence of countless numbers of
actively multiplying spirochetes in the tissues is not far fetched.


...Transformation: There is a definite sequence of events in the disintegration of the spirochaeta myelophthora. Breaking-up starts with the appearance of loops, rings ,knobs, partial thickening and the formation of granules of different sizes ....Two chronological sequences may be established:


From:
MS Link

Also READ:
M S
Lyme Disease Misdiagnosed as Multiple Sclerosis
MS in 1954
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links ALS
There all in the Newbie Links
 

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Posted by luvs2ride (Member # 8090) on :
 
James H said:

"There are much easier ways for a medical person to make money than being an LLMD. They are constantly under attack by those (a majority in their profession) who would prefer this all to be swept under the rug. Their licenses are frequently on the line. Most are dedicated individuals with strong personal reasons for fighting Lyme and critics."

I agree that LLMDs are standing up against the tide and I believe they are doing so out a genuine concern for the public. But I can not think of a single thing the majority of the doctors who stand against longterm abx use stand to gain by "sweeping it under the rug".

Why would they go to such lengths just to sweep something under a rug? Now insurance companies have lots to gain, but Big Pharma has more to gain from supporting longterm use of abx and Big Pharma is powerful. More powerful than even insurance companies. In fact, they hold all the power because they conduct much research on their own. Insurance companies do not need to play games. They can just simply refuse to cover it.


Since lifelong lyme treatment would be VERY profitable to Big Pharma, and insurance companies do not have to cover it or if government intervened and forced them to cover it, they would simply charge rates accordingly; I fail to understand what is their motivation to sweep it under the rug.

I really believe doctors are just at the mercy of both Big Pharma and insurance companies. The only reason they might want to sweep it under the rug is because they just don't know how to prove it or how to treat it. It is well known that overuse of abx is creating superbugs and doctors have been drawing back on their use having nothing to do with treating lyme. So it seems to me, doctors refusing to treat you longterm are also doing so out of geniune concern.

If there is an ulterior motive, please tell me exactly what and why. I really don't know that answer and keep watching this debate wondering who is right.

After all, most of you here are still sick despite longterm abx use.
 

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Posted by lymie tony z (Member # 5130) on :
 
OK luvs to ride...listen up, I'm only gonna explain this once...

Big Pharma is guilty of a big big fraud!
They come out with new and improved versions of their products(like antibiotics)by maybe changeing one molecule and calling it something else so

they get a new patent and a great deal of money for their supposed "new product" when in reality it's no better than the older products and probably less effective.

Then they come out with this propaganda saying the over prescribed antibiotics is going to create "super bugs" when in reality lyme is the only "super bug" around.

And for the other mutated forms of old diseases the "new and improved" products coming from big pharma can't cure cuz the "new and improved" products ARE'NT new and improved.


Insurance companies know this fraud and don't want to have to pay the big pharma's but don't want to blow the whistle on them either! So they spread the propaganda.

The ducks simply don't want us around cuz they like their houses in the better sections of town and know they can't cure us with the depleted versions of the antibiotics out on the market.

They don't want to get sued by us OR the AMA and lose their practices and the nice home in the nicer sections of town.

So they simply tell us...we don't have that disease here or there or anywhere they are so they don't have to treat it...

Their has also been written somewhere that ducks get a kickback from the insurance companies for refusing to treat us so we'll go away and the insurance we might have will save money on the inferior antibiotics that big pharma is making billions on....

Does this help you understand a little better dear???

Hope so.

zman
 

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Posted by treepatrol (Member # 4117) on :
 
I wish Loub would make me a moderator this crap would ceace in a hurry.
 

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Posted by luvs2ride (Member # 8090) on :
 
Oh thank you zman. You are sooooooooo kind!

First, I already know about Big Pharma's tricks with new (old) drugs in new colors (can you say purple pill?) so they can extend their patents.

I'm rolling around laughing at the thought of the insurance companies paying the drs to refuse to treat. That's a hoot!

Sorry, zman, I have made my career in the insurance industry and while I know most of their warts and bumps, I also know the legitimate rules and regs they run by. Believe me, they are NOT government mandated vehicles. They ARE "for-profit" businesses and their first, primary and fully disclosable goal is to make money. It is not to get you well, or support your efforts to get well.

They will only pay for treatment that is well established. Period! If it is something we can all get at the same time (can you say castatrophe like uh say biochemical warfare)they won't cover it at all. They definitely will not cover experimental treatment such as longterm use of abx to kill the apparently indestructible lyme bug.

Insurance companies certainly have begun to run the doctors lives and in fact play doctor in that they dictate what and how much treatment doctors can give for certain diseases such as LYME.

This practice began after too many doctors and hospitals were price gouging the insurance companies forcing the companies to hire medical teams of their own to monitor treatments. Now, all doctors practically work for the insurance companies in that if they don't diagnose and treat within the box established by the insurance company, they don't get paid. Get it???? So there really do is a motive and a means by which insurance companies can control this.

If I saw more success using longterm abx, I would believe the conspiracy theory better, but perusing this website for 1 yr has not shown me any success stories. Meanwhile I do see lots of trips to ER and gallbladder removals.

I'm not against trying to get well with longterm abx. My personal belief is that if you are a competent adult faced with an illness that has no clear cut cure, you should be allowed to choose your weapons. After all it is your body.

I just fail to see where doctors and certainly not Big Pharma stand to gain by wickedly attacking you and other doctors for trying to get well. As I have already stated, insurance companies don't have to go to such measures. It is perfectly legal for them to either deny to cover experimental treatments, or charge an adequate fee to allow them to make a profit.
 

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Posted by lymie tony z (Member # 5130) on :
 
My dear luvs

If you already knew about big pharma...why the hell did you ask?

I NEVER said insurance companies were government regulated anywhere in my disertation...I did mention they were profit oriented by stating that they did'nt want to have to pay for treatments.

Speaking of treatments by the way....

WHEN has treating an infection with antibiotics ever been referred to as "experimental"...

Furthermore...Dr. Fallon and Columbia University's ongoing study proving openended or at least extended antibiotic treatments alleviate cognitive disfunction in lyme positive neurolyme patients.
After one publishes findings they're no longer experimental...ya know!
Something you probably need to address...dearie!

Anyone who has ever had severe neurological problems with this disease and has gotten appropriate IV extended abx therapy can tell you it works...we did'nt need Dr Fallons study...

It taint experimental to us by gawd!

The morons that need proof are the bumsteere's of the world so they'll get off the backs of the LLMD's of the world.

zman
 

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Posted by luvs2ride (Member # 8090) on :
 
z-man

I'm sorry but the only thing you have convinced me on is that there are serious cognitive issues on this website and it is making you pararnoid.

Cave

I really do champion your right to use abx as treatment. I am afraid though that that form of treatment is going to be outlawed and tuning in next year will simply have more sick people who can't get well. I am doing amazingly well with alternative care, but this was my 2nd bought of lyme (first time I did the abx) and I really want abx treatment to be available to me too should alternative care ultimately fail.

So far though, it has put me into remission. YES STYMIELYMIE, I too am here and doing well.
 

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Posted by lymie tony z (Member # 5130) on :
 
I REALLY don't recognize your opinion as being sound...

take yourself back to scifi med where you will be recognized for what you really are!

TTFN
zman
 

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Posted by TNJanet (Member # 10031) on :
 
While we debate each other, the ISDA continues to spread "facts" which are having an IMMEDIATE rippling effect to further limit our treatment choices.

Here is an allegory I thought of. Say, for argument's sake that you have been diagnosed with cancer of the prostate gland (and you're a man of course.)

The standard of care for treatment of prostate cancer includes 1)watch and wait to see if it worsens;

2)implant radioactive seeds to destroy the cancer (usually an outpatient procedure but patient must rest at home for a few days); or

3)remove the prostate (at least a 3 day hospital stay) and deal with side effects such as ongoing incontinence, impotence, and pain.

Guess which "standard of care" most insurance companies are "encouraging" doctors to suggest for most patients? If you picked #1 you win.

Since most prostate cancer is slow growing, the watch and wait "Standard of Care" would seem to make a lot of sense, HOWEVER

this form of "nontreatment" is a fairly new phenomenon. And recent studies suggest that by the time #2 or #3 treatments are finally chosen, the cure rate dramatically decreases.

Don't believe me? Do your own research about it. And while you're doing that, research other illnesses, some benign and some lethal, where a pattern seems to appear in which protocols are slowly changing

to limit hospital stays, surgeries in general, to "punish" the overweight, and so on.

Yes, we must fight for the right to be treated by physicians who understand Lyme disease! Yes, as each of us is able, we must make our presence as a group and our individual stories known.

But we're also fighting a TREND here. We are not the only patients suffering. We are suffering disproportionately.

Back when HIV was definitely an "unpopular" illness, gays rallied and finally were able to get research and treatment desperately needed. But the real turning point came when that sweet child, Ryan White, became the poster boy for the "innocently ill" that gave HIV/AIDS a new face.

The Bill named after him, The Ryan White Act, is still the place from which most monies flow to provide treatment, research, education and prevention.

And now AIDS is the number one killer in the largest underdeveloped countries, even with the billions of dollars spent to slow its spread.

So, and I even hate to say the words, until Lyme is TRULY endemic and many more suffer and DIE, we may be stuck with what we have. This is not to say to give up ANY fight, but to continue to chip away at what are obviously unfair medical practices.

Continue to write letters, sign petitions, fight the insurance companies and HMO's, and spread the word to any and everyone willing to listen.

And maybe we ought to narrow our focus and find some poster children of our own who could sway public opinion and get the ISDA away from our doctors' practices and our bodies.

JMHO...Janet
 

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Posted by lymie tony z (Member # 5130) on :
 
See what you started Cavey...

IT's IDSA....sheesh....


dang lymey brains!

TNJ

zman
 

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Posted by imanurse (Member # 7022) on :
 

quote:

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Originally posted by treepatrol:
I wish Loub would make me a moderator this crap would ceace in a hurry.

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