doctors

[Guest guest]

Dear Friends: Well, I think I finally hit paydirt! I found a doctor

who was familiar with Dr. Burrascano, and even consults with him

occasionally! I have CNS Lyme which was recently diagnosed, and she is

doing a spinal tap on Wednesday to see whether she can get a

confirmation. UGH! At least she'll begin me on IV's. Please pray for

me!

Lovette

[Guest guest]

Who is it and where is she?

Clowers

Clow@...

[Guest guest]

F. Mott wrote:

> From: " F. Mott " <smott@...>

>

> Dear Friends: Well, I think I finally hit paydirt! I found a doctor

> who was familiar with Dr. Burrascano, and even consults with him

> occasionally! I have CNS Lyme which was recently diagnosed, and she

> is

> doing a spinal tap on Wednesday to see whether she can get a

> confirmation.

I'm not adoctor but I'm not impressed with a spinal tap being

used for confirmation. If you test positive using blood tests then that

is enough. Oftentimes,the spinal tap will come back negative.

Spinal taps are no more reliable then blood tests and that

has been

documented. If she does consult with Burrascano, she should ask him if

it's needed. I strongly dounbt that he would say you need a spinal tap

if you tested positive and also exhibit Lyme symptoms.

I'm not trying to sound negative, but I cringe when any

doctor

says I need to do a spinal tap for confirmation considering the fact

that

a spinal tap is an involved procedure with risks and the blood test

is proven to be as accurate.

take care Josh

> UGH! At least she'll begin me on IV's. Please pray for

> me!

>

> Lovette

>

> -------

> ----------------------------------------------------------------

>

[Guest guest]

oh please think twice before putting yourself through a spinal tap. I had one

five years ago and it came back negative for Lyme yet my blood tests kept

coming back positive. I eventually got a doctor to put me on IVs and improved

dramatically, but the spinal tap was an awful experiance of two weeks of major

headaches and pain for nothing! It is also inconclusive.

[Guest guest]

joebur wrote:

>

> From: joebur <joebur@...>

>

> F. Mott wrote:

>

> > From: " F. Mott " <smott@...>

> >

> > Dear Friends: Well, I think I finally hit paydirt! I found a doctor

> > who was familiar with Dr. Burrascano, and even consults with him

> > occasionally! I have CNS Lyme which was recently diagnosed, and she

> > is

> > doing a spinal tap on Wednesday to see whether she can get a

> > confirmation.

>

> I'm not adoctor but I'm not impressed with a spinal tap being

> used for confirmation. If you test positive using blood tests then that

> is enough. Oftentimes,the spinal tap will come back negative.

>

> Spinal taps are no more reliable then blood tests and that

> has been

> documented. If she does consult with Burrascano, she should ask him if

> it's needed. I strongly dounbt that he would say you need a spinal tap

> if you tested positive and also exhibit Lyme symptoms.

>

> I'm not trying to sound negative, but I cringe when any

> doctor

> says I need to do a spinal tap for confirmation considering the fact

> that

> a spinal tap is an involved procedure with risks and the blood test

> is proven to be as accurate.

>

> take care Josh

>

> > UGH! At least she'll begin me on IV's. Please pray for

> > me!

> >

> > Lovette

> >

> > -------

> > ----------------------------------------------------------------

> >

[Guest guest]

Maybe you should ask your doctor about the urine antigen test. Have it sent

to the ignex lab in California. It is aliitle expensive, but most insurance's

will cover part of it.

I wish you good luck with your new doctor.

Take care,

[Guest guest]

I didn't test positive on ELISA either, but I did test positive

on Western Blot, with 2 out of 5 bands required. The

Western Blot would be much less expensive than spinal tap

and the spinal fluid is not known for being that reliable of

a test for Lyme, so it is not often used because of being

so invasive. My .02 cents worth. I'd go for the Western

Blot testing and again, a lab known for doing reliable lab

work like IGeneX, is a must or all the testing in the world

is not any good. Even the CDC admits the different labs

they tested were lacking as they took specimens taken from

a person who was known positive, yet about half the labs

returned negative for Lyme. The lab doing the testing most

certainly makes a difference in whether an objective or

reliable test is performed.

[Guest guest]

In a message dated 10/19/98 5:00:48 PM Eastern Daylight Time, smott@...

writes:

<< Dear Friends: Well, I think I finally hit paydirt! I found a doctor

who was familiar with Dr. Burrascano, and even consults with him

occasionally! I have CNS Lyme which was recently diagnosed, and she is

doing a spinal tap on Wednesday to see whether she can get a

confirmation. UGH! At least she'll begin me on IV's. Please pray for

me!

Lovette >>

I absolutely will pray for you!!!

However, I agree with many others who say a spinal tap is not reliable. I

had one done and it was negative, even with PCR testing. Yet my Western Blot

is positive. The spinal tap itself was not too bad. I felt no pain when it

was done. I did have a KILLER headache for 5 days after. I found that the

key to getting rid of the headache was not only lying flat but also drinking

LOTS and LOTS of water. You need to replenish the fluid that is removed from

your body from the spinal tap. So hydrate, hydrate, hydrate!!!

Hugs,

Chrissy Ü

[Guest guest]

Hi Lovette,

Congratulations, you are so lucky to find a doc who consults with

Burrascano! Remember to lay still after the spinal. Do keep us posted on

how you do, and especially of the test results from the spinal tap.

Hugs and Prayers,

Marta

>From: " F. Mott " <smott@...>

>

>Dear Friends: Well, I think I finally hit paydirt! I found a doctor

>who was familiar with Dr. Burrascano, and even consults with him

>occasionally! I have CNS Lyme which was recently diagnosed, and she is

>doing a spinal tap on Wednesday to see whether she can get a

>confirmation. UGH! At least she'll begin me on IV's. Please pray for

>me!

>

>Lovette

>

[Guest guest]

Joe,

Maybe Lovette's doctor wants to rule out other diseases with the spinal

tap. Insurance regulations could also be a problem....just a thought.

Marta

>From: joebur <joebur@...>

>> I'm not a doctor but I'm not impressed with a spinal tap being

>used for confirmation. If you test positive using blood tests then that

>is enough. Oftentimes,the spinal tap will come back negative.

[Guest guest]

Hi, I have had 2 spinal taps in which they were looking for MS, I had really

good experience with both of them and never got a headache. I do believe that

they are not real accurate for lyme testing from what I've read, but one never

knows for everyone is different.

TO ANYONE READING THIS.......if you do have to have a tap, and do get a

headache they can do what they call a blood patch to stop the

headache......MAKE THEM DO IT ASAP, there is no need to suffer, the headache

comes on when the needle hole does not completely close up, and spinal fluid

leaks out. All they need to do is take some of your own blood and put it back

in the needle hole and it will stop the leakage.

Hope I helped

Amy

[Guest guest]

Hi ,

I am not in California, and don't know of either of these doctors, but it

is OK to post doctors names on the list when we are looking for information

about them, so no problem there. Hope you get some responses.

Hugs,

Marta

>From: BailieBoy@...

>

>I don't know if its ok to post about this on the list but please respond

>privately to me. If anyone has seen either Dr. ph ph or Dr. Yang

in

>California, please email me with your experiences, positive and/or

negative.

>I'm considering taking a long drive to see one of them.

>Thank you!

>

>

[Guest guest]

--- BailieBoy@... wrote:

> From: BailieBoy@...

>

> Subj: doctors

> Date: 5/19/99 3:22:46 PM Pacific Daylight Time

> From: BailieBoy

> mlmccoy@..., lymeaidonelist

>

> Thanks Marta. I just got " yelled at " from someone

> on the newsgroup for

> posting and asking about doctors names. This really

> upset me. How do I know

> its not " politically correct!! " I thought it was

> quite rude of her actually.

> I am really ill right now, and stuck somewhere with

> no lyme literate

> doctors. I'm sure I'm having a major relapse after

> going off IV-my neck is

> so stiff I have pain going into my neck to the back

> of my head. It is a big

> deal for me to drive by myself 6-7 hours to see a

> doctor I know nothing

> about!!!

> SORRY everyone to rant and rave but I am really sick

> today and miserable and

> don't know where the heck to turn.

>

>

> -

Im so sorry to hear you are having so many problems. I feel the same

way alot of times and I think this is the best place to be when we are

feeling so angry and misunderstood. This list and all the wonderful

people on it have been such a big help to me. Not only does everyone

share the anger and frustration but we all also feel the happiness for

each other when something really good happens. To me everyone is like

an extended family and Ive never even met a single person on this post.

I hope someday we can all get together and be able to give the hugs in

person that we so openly and sincerely give on this post. The most

important thing to me is that noone judges you for bad spelling or

asking the same question over and over because you cant remember asking

it. Noone laughs at you for being afraid of " little " things. And no one

tells you there is nothing wrong with you that you are just tired or

worse yet you are just nuts. That is why I am trying to get as much

education and experience as I can so that even when(if) I am ever able

to regain my old life I can still help others and maybe give back some

of the love and caring that I have gotten here from people I have never

met. If only the people that I do know that see me everyday could have

the compassion and understanding and love that this group has.

I hope things get better for you soon. Always know you have friends

here and we will always be willing to listen.

L(MI)

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_____________________________________________________________

[Guest guest]

Hi ,

Sorry someone gave you such a hard time on the Lyme newsgroup, that is

the trouble with posting on a large forum like that, you are always bound to

offend someone, and they are real quick to tell you about it. That's why

when I had the opportunity to co-moderate this private email list, I jumped

at it.

While it is not always a good idea to write about our Lyme doctors on an

open forum, I see no problem with asking specifically about them by name,

and getting responses through private email. The problem, and you are

probably unaware, is there are very few good Lyme doctors, Lyme is a very

political disease, many good doctors who have tried to help us have lost

their licenses! Case in point is Dr Natole, of Michigan. If you want to

read about his case, you can do so at the Lyme Alliance site:

http://www.lymealliance.org/html/amicus.html

Another good doctor, Dr Bleiweiss of NJ, committed suicide a few years

back, because he was targeted, like Natole, by the insurance companies. He

lost his license, regained it, then lost it again. I know it all sounds

surreal, but this is very true. Because there is not accepted protocol for

treating Lyme disease, these doctors were brought before their peers (other

MD's) after complaints from the insurance companies, who did not want to pay

for extended Lyme treatment, when the boys at Yale were saying it was easily

cured after a few weeks of antibiotics.

Let us know approximately where you live so we can maybe help you find a

good Lyme doctor. I hope you are feeling better today,.

Hugs,

Marta

>From: BailieBoy@...

>>Thanks Marta. I just got " yelled at " from someone on the newsgroup for

>posting and asking about doctors names. This really upset me. How do I

know

>its not " politically correct!! " I thought it was quite rude of her

actually.

> I am really ill right now, and stuck somewhere with no lyme literate

>doctors. I'm sure I'm having a major relapse after going off IV-my neck is

>so stiff I have pain going into my neck to the back of my head. It is a

big

>deal for me to drive by myself 6-7 hours to see a doctor I know nothing

>about!!!

>SORRY everyone to rant and rave but I am really sick today and miserable

and

>don't know where the heck to turn.

>

[Guest guest]

Hi ,

Thanks for the lovely post, you brought tears to my eyes, I said the

same thing a few years ago, when I was at my worst, if I ever got well

enough, I had to give something back and do my utmost to help people as I

was helped.

Hugs,

Marta

>From: lc lott <lclott@...>

>

>

>> -

>Im so sorry to hear you are having so many problems. I feel the same

>way alot of times and I think this is the best place to be when we are

>feeling so angry and misunderstood. This list and all the wonderful

>people on it have been such a big help to me. Not only does everyone

>share the anger and frustration but we all also feel the happiness for

>each other when something really good happens. To me everyone is like

>an extended family and Ive never even met a single person on this post.

[Guest guest]

lisa,

that is why i like lyme aid over news groups....i can understand why they do

not want the docs names mentioned as many doctors have incurred the wrath of

the government(why i do not know) about treating lyme......my own llmd quit

praticing in NJ and now is in PA.....and no longer reports lyme cases because

of problems ..a doc in mich. lost his license over lyme disease.......lynme

aid is a " private group " and that is why we do give names..... right marta?

Reid

[Guest guest]

she must live in an area w/TONS of LLMD's. she needs to move to VA and get

a taste of DESPERATION. i finally got some names from this listserv! you

are not the only one to ask for REFERENCES of COMPETENT MD " S! i am sick of

wasting my time and money on QUACKS!!!!

i feel for you bailieboy. you keep on trying to get MD's names. don't

let it get you down. FORGE AHEAD. LOOK OUT FOR YOURSELF. Help is near for

you, i can feel it!! someone at this site will help you.

>From: BailieBoy@...

>

>Subj: doctors

>Date: 5/19/99 3:22:46 PM Pacific Daylight Time

>From: BailieBoy

>mlmccoy@..., lymeaidonelist

>

>Thanks Marta. I just got " yelled at " from someone on the newsgroup for

>posting and asking about doctors names. This really upset me. How do I know

>its not " politically correct!! " I thought it was quite rude of her actually.

> I am really ill right now, and stuck somewhere with no lyme literate

>doctors. I'm sure I'm having a major relapse after going off IV-my neck is

>so stiff I have pain going into my neck to the back of my head. It is a big

>deal for me to drive by myself 6-7 hours to see a doctor I know nothing

>about!!!

>SORRY everyone to rant and rave but I am really sick today and miserable and

>don't know where the heck to turn.

>

>

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>

>More than 1,000! Create yours now!

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>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

--- J & M McCoy <mlmccoy@...> wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi ,

> Thanks for the lovely post, you brought tears to

> my eyes, I said the

> same thing a few years ago, when I was at my worst,

> if I ever got well

> enough, I had to give something back and do my

> utmost to help people as I

> was helped.

> Hugs,

> Marta

>

>

> Marta-

Im glad you liked the post. It came sraight from my heart. I really

dont know what i would do without all you guys. I just wish it wasnt an

illness bringing us all together. Isnt that how it usually is tho.

People dont just reach out to each other to be kind. There usually has

to be a reason. This whole Lyme experience has really made me

reevaluate the kind of person i was and the kind I want to be.

Lets all just keep pluggin along and try to make the best of life and

live it to the fullest.

Take care. Hugs to all.

L(MI)

>

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> You may substitute " unsubscribe " , " digest " , or

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> the word " subscribe " ( " normal " is the opposite of

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>

_____________________________________________________________

[Guest guest]

Hi Reid,

I think to be safe and avoid unnecessary problems for our doctors, we

should still email information about the doctor privately, but if there is a

general question about a doctor someone is thinking of seeing, there is no

problem posting the question with the doctor's name on the list, but the

responses should be private. While our list is private, and the archives

can only be accessed by subscribers, we still can not be sure that someone

with an ulterior motive may subscribe. Does that make sense?

I am a bit foggy today.

Hugs,

Marta

>From: RMcmur3194@...

>

>lisa,

>that is why i like lyme aid over news groups....i can understand why they

do

>not want the docs names mentioned as many doctors have incurred the wrath

of

>the government(why i do not know) about treating lyme......my own llmd quit

>praticing in NJ and now is in PA.....and no longer reports lyme cases

because

>of problems ..a doc in mich. lost his license over lyme

disease.......lynme

>aid is a " private group " and that is why we do give names..... right marta?

>Reid

>

[Guest guest]

Please share with me any info you have received about these two doctors.

Thanks.

[Guest guest]

Doctors can be frustrating;-) It's always good to have a safe place to vent especially when we don't feel good or have been struggling with health issues. I know when I feel awful or have been in the hospital because my body isn't working as advertized, I've been known to send seasoned nurses running for the door;-) I'm glad I found this group, they've been very helpful to me and my quest to help my body feel better. Anyway I hope you won't mind if I spend some time praying for you, it's my reality. Take care and feel better soon ok.<<Posted by: "art_ldn" rtee54@... art_ldnTue Jul 28, 2009 4:25 am (PDT)Glad to know you took the time to read my rant. Us authors crave attention, ya know.I have MS and see a neurologist that prescribes LDN for me. How cool is that.Save the prayers for yourself, I rely on reality, not nonsense and superstition.Have a nice day.>> Kem in Eugene <º)))><

[Guest guest]

is in Oz so I`m sure he`ll pass on the info. I know there is a compounding

pharmacy call Greens but don`t know if it`s in NSW or not but theres a few

aussies and kiwi`s here that use LDN.

-- In low dose naltrexone , " Donnelly " <john@...> wrote:

>

> Hi all

>

> I had an email today from New South Wales, Australia. Looking for a doctor who

will prescribe LDN. Anybody know one?

>

>

>

[Guest guest]

Best bet is to contact Crystal for her list of doctors as New South

Wales is bigger than Texas so we need to know more specifically where

in NSW. , when you do get names suggest that the person who asked

gets their LDN made up by the Green Dispensary in Adelaide, the closest

thing we have to Skip's Pharmacy. Even though I'm possibly as far from

Adelaide as that person is I and many others use them.

Cheers,

cat707k wrote:

is in Oz so I`m sure he`ll pass on the info. I know there is a compounding pharmacy call Greens but don`t know if it`s in NSW or not but theres a few aussies and kiwi`s here that use LDN.

-- In low dose naltrexone , " Donnelly" <john@...> wrote:

Hi all

I had an email today from New South Wales, Australia. Looking for a doctor who will prescribe LDN. Anybody know one?

[Guest guest]

My compounding chemist in Sydney, NSW, is making my LDN: Tucker's Pharmacy in

Ramsgate.

[Guest guest]

Larry I think the only thing you need to address is your Estradiol levels have

them checked I use Quest labs and do this tests.

Estradiol sensitive Code #4021

Testosterone, Free, Bioavailable & Total LC/MS/MS Code # 14966X.

Here are some links about this problem.

http://jcem.endojournals.org/cgi/content/full/89/3/1174

http://www.medibolics.com/ArimidexBoostsTestosterone.htm

http://www.lef.org/magazine/mag2008/nov2008_Dangers-of-Excess-Estrogen-in-the-Ag\

ing-Male_01.htm

If you can't get your Dr. to test this and give you Arimidex let us know. You

can buy it over seas or from some labs without a scirpt.

Co-Moderator

Phil

> From: LarryP <llpete@...>

> Subject: doctors

>

> Date: Saturday, November 21, 2009, 11:28 PM

> I first learned that I had

> klinfelters over four years ago and have been on testestrone

> therpy for over twenty years. First the pills then the

> injections I pretty much had to educate my family doctor

> about this and I read good responses from you guys as what I

> need to do. I was wondering if there is anyone on this site

> that is a doctor because I am new and I really do not know

> much about any of you. I have not been able to keep it up

> sexually for a long time and though it was a blood blockage

> but now I am thinking its too much testostrone that made to

> much estregon and that is why I am leaning more to the

> female side each day. I plan on taking a copy of the

> information that was sent to me about what medications I

> should be on but I know that he is going to ask  who

> gave this to me and he is going to want to check it out

> before he gives it to me. I have not been able to find any

> doctor in my area or any doctor who my insurance would pay

> for that deals with klinfelters and because of my lymphedma

> conditon I do not drive very far. I live in the Northern

> Indiana area in Goshen Indiana . My doctor did sent me to a

> urologist who said he knew all about it when he did not and

> he took me off the shots and put me on creme which made

> thigns worse. Needless to say I never went back there

> again.  Any help would be appreciated.

>

>

>

> ------------------------------------

>

>