Hello

[Guest guest]

So he started me on 14 days of an antibiotics and said he'll see me in 6 weeks.

Hello back at you! My name is Hall, and I have been diagnosed with lyme

too. This group has changed my life. I now accept that I have lyme, instead of

trying to deny it. And I am always learning more by staying here, and listenig

and asking, and sometimes just lurking around. I have found excellent Lyme

literate Doctors, referred to as LLMD. I will be having my first appointment

this next week. I have studied vitamins. What I am trying to say is this. I

invite you to stay, you don't need my invitation though, for sure. Stay and

learn and lurk and feel. OK! That all being said, I copied portions of your

letter to respond to. I truly believe we have a very lyme disease knowledgable

base here, I'm actually proud of them. I have shared enough info with my husband

from this list, (he is a hard boiled scientist, with a Ph degree! ) and HE has

come to see the light! 14 days of ABX (antibiotic) is LUNACY for lyme treatment,

if you have had it for sometime. I am sorry, but this is the truth. There are

people here who could help you find a Dr. in your area, who will treat your

lyme, not just provoke a giant. Giving tiny bits of treatment is not good. It

does not deal with the germ efeectively. Example. Lyme is a spirokete, as is

syphilus. Treatment for that disease is strong and long. I have to go to work!

Good luck. You CAN rise above! Hope you find your way soon! A friend,

Anyhow..thats about me. Sorry to ramble so...

[Guest guest]

I'm also in TX and can help with the names of some good Lyme docs in

Houston.

Jean

[Guest guest]

I live in the Fort Worth area.

YT

IHi fellow Texan! What part of Texas do you live in? I live in Austin. You

need to find a good llmd!

[Guest guest]

>>

> Dear Texas,

Thank god one of the doctors you have seen had the foresight to test

you for Lyme, and that you were lucky enough to come up positive if

this testing was done through a standard lab, Many standars labs do

not provide acurate results. Even though you are being treated by

infectious disease specialist, this may not mean he is a lyme

literate physican. The more you go the boards and other lyme web

sites the more you will learn about this disease. Knowledge is

power. There are few doctors in comparision to # of Dotors out there,

that know just how dangerous this disease can be if not treated

properly and somtimes aggressivly. Find out who heads one the local

lyme disease support groups in Texas, they should be able to steer

you in the right direction. 2 weeks of antibiotics is not enough

amunition to fight this disease. Work fast and read all you can.

Good Luck

saxi

[Guest guest]

hi

you may or may not have lyme

do you have a stiff neck?

do you have acute pain in some of yur joints?

do you confuse words in ways you did not before?

lyme IS a very scary disease to have.

if you have an active case than this list will help you get to speed.

the good news is there are a lot of treatments that have helped lyme.

you can get better over time with knowledge and dedication.

if you have lyme and are like most, you will not be teaching this semester

you will be spending time working to get this under control. be

prepared for this and realize that

this is part of the process and most of us have gone thru it.

--

best

william meyer

[Guest guest]

How do I find a lymes specialist in my area?

[ ] Re: Hello

>>

There are few doctors in comparision to # of Dotors out there,

that know just how dangerous this disease can be if not treated

properly and somtimes aggressivly. Find out who heads one the local

lyme disease support groups in Texas, they should be able to steer

you in the right direction. 2 weeks of antibiotics is not enough

amunition to fight this disease. Work fast and read all you can.

Good Luck

saxi

[Guest guest]

You could ask here. What is your area? Rita

[ ] Re: Hello

>>

There are few doctors in comparision to # of Dotors out there,

that know just how dangerous this disease can be if not treated

properly and somtimes aggressivly. Find out who heads one the local

lyme disease support groups in Texas, they should be able to steer

you in the right direction. 2 weeks of antibiotics is not enough

amunition to fight this disease. Work fast and read all you can.

Good Luck

saxi

[Guest guest]

Ft. Worth/Arlington (TX)

Re: [ ] Re: Hello

You could ask here. What is your area? Rita

[Guest guest]

I know there are LLMDs in TX. Does anyone know who they are? Rita

Re: [ ] Re: Hello

You could ask here. What is your area? Rita

[Guest guest]

Another resource to search for doctors is:

http://www.lymenet.com click flash discussion in the upper left hand corner

Then choose " seeking a doctor " . Put a post there and someone will help you

asap.

Carol Kerr

-- Re: [ ] Re: Hello

I know there are LLMDs in TX. Does anyone know who they are? Rita

Re: [ ] Re: Hello

You could ask here. What is your area? Rita

[Guest guest]

Hi-

I live in Texas, too---

I have some names and numbers of LLMD's in Texas--if you

email me privately, I will send them to you. (I tried to email you

but it didn't go through)

You also need to know about another group:

txlyme@...

It is a Texas group--you might find some neighbors, as well as

more info.

Good Luck!!

Vicki

[Guest guest]

Bea-

I have also been diagnosed with CFIDS and tested positive for chlamydia pnemonia

as well. It wasn't until my gall bladder was removed and biopsied that I

tested positive for Lyme Disease.

The labs from my gall bladder were received this past week. My surgery was 29

Jul 03. I have not been back to my doc (a rheumatologist) to find out exactly

what test was used that showed the Lyme. The lab my doc uses is Medical

Diagnostic Labs in Leadenhall, NJ.

For the past 6 years that I've suffered with the classic lyme symptoms, I've

been tested NUMEROUS times though blood tests and this past Feb went through the

6 week urine Lyme titre thing - all negative. I'm 43 and this has absolutely

ruined my life.

I'm just learning about the tests and treatments and the fact that since I've

had the disease so long, my progonsis is 'iffy' since there's a great

possibilitiy permanent damage has already occured. How long has your son had

the symptoms? If he fits the Lyme profile, I'd keep searching until you can

absolutely rule it out.

Good luck to you both

Sheryl

[ ] hello

Hello,

I'm new to the lyme list and it is my adult son who is suffering from " chronic

Fatigue syndrome " . I have recently been reading on the CFS Experimental list

that many CFS patients actually have lyme disease. In view of that information

he has recently had tests for lyme through Igenex Lab ordered by our Dr.

Markowitz from Michigan.

The tests were all negative but he was diagnosed with chlamydia pneumonia and

cocciodosmycosis (sp?). He is currently being treated with zithromax and feels

pretty awful. After completing this round of antibiotics he will be begin

taking an new antifungal medicine (voriconazole). The doctor feels these are

opportunistic infections and could be causing the fatigue and other symptoms.

He has all the lyme symptoms but the doctor goes by the tests as far as a

lyme diagnosis. Are we taking the right steps here. These medicines are not

free of side effects and I have some concern about the antifungal especially.

The lady who has been sharing information with us on CFS-L is no longer able

to post there so if anyone has advice to share it would be most welcome.

thank you.

Bea

[Guest guest]

I'd see a Lyme Literate MD asap. Igenex is a great lab but Lyme tests miss a lot

of Lyme. Rita

[ ] hello

Hello,

I'm new to the lyme list and it is my adult son who is suffering from " chronic

Fatigue syndrome " . I have recently been reading on the CFS Experimental list

that many CFS patients actually have lyme disease. In view of that information

he has recently had tests for lyme through Igenex Lab ordered by our Dr.

Markowitz from Michigan.

The tests were all negative but he was diagnosed with chlamydia pneumonia and

cocciodosmycosis (sp?). He is currently being treated with zithromax and feels

pretty awful. After completing this round of antibiotics he will be begin

taking an new antifungal medicine (voriconazole). The doctor feels these are

opportunistic infections and could be causing the fatigue and other symptoms.

He has all the lyme symptoms but the doctor goes by the tests as far as a

lyme diagnosis. Are we taking the right steps here. These medicines are not

free of side effects and I have some concern about the antifungal especially.

The lady who has been sharing information with us on CFS-L is no longer able

to post there so if anyone has advice to share it would be most welcome.

thank you.

Bea

[Guest guest]

First let me say, so sorry about your son's condition. I know that it has to

be tough to go through this with him, even if he is an adult.

Secondly let me commend you for your diligence in researching the options.

Had my mom had of had the same resources and done the same about 30 years

ago, I could have avoided a lot of unnecessary pain and suffering. Of

course, we didn't have the Internet then, and that has been the key to my

recent diagnosis.

You said:

He has all the lyme symptoms but the doctor goes by the tests as far as a

lyme diagnosis. Are we taking the right steps here. These medicines are

not free of side effects and I have some concern about the antifungal

especially.

You are right to be concerned about this MD. Blood tests do NOT always show

the correct picture. Many factors, such as being on abx recently affect the

outcome of the WB. Some people with TBD, or tick borne disease, never get a

positive Western Blot.

Lyme and other TBD's are " clinically " diagnosed because there is no

DEFINITIVE test!! In my humble opinion, the situation deserves review by a

LLMD.

I found my LLMD by registering and posting in the Flash Discussion of

http://www.lymenet.org under " Seeking a Doctor " section. There is a great

bunch of folks there who are much smarter than me, and they will have great

info to share. Post your situation under " Medical Questions " too.

Their archives can easily be searched also. It's a great site for additional

support. FYI the candida symptoms you mentioned are also common, as lymies

get yeast overgrowth from abx treatment.

When I finally got diagnosed with Lyme, my lower bowel had fermented yeast

in it, and every time I ate I got dizzy and passed out. That's why my

nickname on LymeNet is " dizz " !! There's a good possibility that your son has

compounded problems also. The good thing is a knowledgeable LLMD will

address all.

My LLMD, which I'd be happy to share info about off board, treats me for

yeast, Lyme and co-infections, diet and medications, specifically suggests

supplements and exercise. Must build the whole person to get better... not

just ad abx and poof you are well. Hard row to hoe!!!!!!

My e-mail address is carolkerr@... Please feel free to drop me a line

if you want to talk further.

Best wishes to you and your son. Your son is very lucky to have a mama like

you. My mama thinks I'm just a hypochondriac and doesn't have much to do

with me. You hang in there!!

(((BIG HUG)))

Carol Kerr

[Guest guest]

Hi Bea,

I imagine that you are referring to Dickenson. I am another

who was diagnosed with CFS but also has Lyme and am currently on long

term abx right now. I am not as familiar with Lyme as others on this

list so I know you will get more information form them. Just wanted to

make contact and let you know I have been there.

Hugs, Michele

-----Original Message-----

From: Bea Plizga Sent: Saturday, August 16, 2003 7:22 PM

The lady who has been sharing information with us on CFS-L is no longer

able to post there so if anyone has advice to share it would be most

welcome.

thank you.

[Guest guest]

Hi Bea,

If your son is feeling worse since he began taking the Zith, I

would consider this a strong indication that it is Lyme. Most

patients usually feel worse when they start antibiotics (abx)

because the abx cause herxing - a dieoff of spirochetes that

releases toxins into the body.

As some have said, if his doctor will not continue with the abx,

I would try to find an LLMD - a doctor who knows that tests are

not what diagnosis Lyme, but the symptoms the patient has.

Best wishes,

Patty

wrote:

> Message: 12

> Date: Sat, 16 Aug 2003 19:22:17 -0400

> From: " Bea Plizga " <dlions@...>

> Subject: hello

>

> Hello,

>

> I'm new to the lyme list and it is my adult son who is suffering

> from " chronic Fatigue syndrome " . <snip> He is currently being

> treated with zithromax and feels pretty awful.

> Bea

[Guest guest]

>

Dear Bea,

It sounds like your sons pyhsician is on the right track, Lyme is so

hard to diagnos properly as their are many infectious disieases that

mimick lyme. The fact that your physician knew to test for

coinfections and mycorobial infections is a God send. In the

practice I belong to, Lyme, Mycroplasmas, and all the co infections

of lyme are tested standardly, 9-10 cases where Lyme either comes

back equivical or negative that patient will come back positive for

something microbial, Zithromax is the drug of choise as well as

Tetracycline. As far as the aniifungal, Was your son tested for his

candida levels. Doctors Data Lab has a great stool analysis which

will help to determine how bad the yeast/candida is. If his levels

are low enough, he may be able to use probiotics in conjction with

his abx therapy, probiotic are product like Bifido Bacterium/Allergy

research, Cultrelle, Vital 10 which have less of an impact as far as

a side effects/however sometimes a prescription is necessary if the

levels are high and there has been a long history of abx use. Tell

your son to hang in there, all of these infectoius diseases are

challenging and each individual is different in their responses to

ABX therapy, The immune system of each person is unique. Tell your

son to be greatful for his diagnosis, many of us go years untols with

no help. Tell him to take one day at a time, and to maintain HOPE

that his suffering will lessen. God Bless and take care.

Saxi

I'm new to the lyme list and it is my adult son who is suffering

from " chronic Fatigue syndrome " . I have recently been reading on the

CFS Experimental list that many CFS patients actually have lyme

disease. In view of that information he has recently had tests for

lyme through Igenex Lab ordered by our Dr. Markowitz from Michigan.

>

>

[Guest guest]

I know this is a lyme list, but herx'ing does not mean a person has lyme. You

also herx from this antibiotic for mycoplasma and chlamydia pneumonia and

probably numerous other infections.

Thanks,

Doris

----- Original Message -----

From: McDermott

If your son is feeling worse since he began taking the Zith, I

would consider this a strong indication that it is Lyme. Most

patients usually feel worse when they start antibiotics (abx)

because the abx cause herxing - a dieoff of spirochetes that

releases toxins into the body.

[Guest guest]

Hey -I remember you from way back.

So how are things really doing?

All your pain is gone or you have gotten used to it?

Lydia

ACDF-C 5/6 w/graft & hardware-3/2000

Posterior fusion L5/S1 w/graft & hardware- 11/2000

Both successes. Only SI Joint problems & muscle pain now. Oh well.

> acupuncture went so fasr had my first microdisectomy mont ago was

> living with sciatic pain and vicodens for a m six months

neurosurgeon

> no fusion nometal

> was so out of it for last four years i remeber i sent aaron dailey

a

> check for 175$

> its all good

> the swammeee

> aciatic pain gone not much strngth in back yet and pt

> i have new understanding of what really causes back injuries

> its just the ultimate deteriorstion of the jelly substancecausing

> bulges(outside of ubrupt accidents) its the culmination of breaking

> your backs for others

> i guess im bitter

> well pain is gone and off drugs it happens

> what happened to old site

> was looking at old members still here and those gone

[Guest guest]

I did say " strong indication " , not absolute proof. Thank you,

Doris, for listing other possibilities.

Patty

> Message: 5

> Date: Sun, 17 Aug 2003 14:41:35 -0700

> From: " Doris Brown " <dorisbrown9@...>

> Subject: Re: Re: hello

>

> I know this is a lyme list, but herx'ing does not mean a

> person has lyme. You also herx from this antibiotic for

> mycoplasma and chlamydia pneumonia and probably numerous

> other infections.

> Thanks,

> Doris

> ----- Original Message -----

> From: McDermott

> If your son is feeling worse since he began taking the Zith, I

> would consider this a strong indication that it is Lyme. Most

> patients usually feel worse when they start antibiotics (abx)

> because the abx cause herxing - a dieoff of spirochetes that

> releases toxins into the body.

>

[Guest guest]

-hi lydia

great to see you!!! i remember you .it's too early to tell..re the

pain andliving with it.The neurosurgeon warned me this probably wont

be last surgery. .All i know i si had no idea my recovery would take

so long .I really like the folks at p.t. , wonderful people.The

firast two weeks post surgery were painful andi was just so loaded on

oxycodones .It;s different .The previous year just was horrible .And

i didnt try to go the full course of acupuncture again. .Maybe if i

contued but i doubt it .

I was lucky enough to have a well respect neurosurgeon do the

procedure.Time will tell .Its nice to see you here Lydia.

jim

swamee-- In spinaldisorderssupport , lydiajo2

<no_reply@y...> wrote:

> Hey -I remember you from way back.

> So how are things really doing?

> All your pain is gone or you have gotten used to it?

>

>

> Lydia

> ACDF-C 5/6 w/graft & hardware-3/2000

> Posterior fusion L5/S1 w/graft & hardware- 11/2000

> Both successes. Only SI Joint problems & muscle pain now. Oh well.

>

>

>

> > acupuncture went so fasr had my first microdisectomy mont ago was

> > living with sciatic pain and vicodens for a m six months

> neurosurgeon

> > no fusion nometal

> > was so out of it for last four years i remeber i sent aaron

dailey

> a

> > check for 175$

> > its all good

> > the swammeee

> > aciatic pain gone not much strngth in back yet and pt

> > i have new understanding of what really causes back injuries

> > its just the ultimate deteriorstion of the jelly substancecausing

> > bulges(outside of ubrupt accidents) its the culmination of

breaking

> > your backs for others

> > i guess im bitter

> > well pain is gone and off drugs it happens

> > what happened to old site

> > was looking at old members still here and those gone

[Guest guest]

Hi :

Thanks for the response. Yes , Cliff has to go in two weeks for a visit. They took him off a blood pressure medicine.

And, they will keep checking the blood pressure. He was on two-- as it was too high-- I guess, it was building up in his blood.

Just wanted to let you know, That I have a sister,,

a good friend , and one of our neighbors is . It is a nice name. Take care.

[Guest guest]

In a message dated 9/5/03 1:03:38 PM Eastern Daylight Time,

swtthing12201999@... writes:

<< what happens if you dont take ANY MEDS?????? >>

Unfortunately you will probably flare and get worse. If you want to see what

happens, make sure your Dr. is with you the whole way! I have an Aunt with PA

who is currently on no meds after years of meds. She has problems, but she

seems to be doing pretty well.

[Guest guest]

In a message dated 9/5/2003 1:03:34 PM Eastern Daylight Time,

swtthing12201999@... writes:

[Editor's Note: Assuming you're talking about PA, quitting all meds

is definitely not a good idea: Call/See your doctor, and be as forceful

about the issue as you are in your post!! You have every right.

D.]

My rheumy took me off Enbrel which I have been on since April and also took

me off the mtx about two weeks ago. He said I should not stay on such strong

meds if they are not working. He put me on Lodine twice a day, an

anti-inflammatory and I am better then I have been in months. The pain has

gotten so much

better. I don't quite understand but I have to go back to him in about a week

and a half. He said that maybe I don't have PA and that it is fibromyalgia

and osteoarthritis. I don't know what to think.

Janet

[Guest guest]

--eumy took me off Enbrel which I have been on since April and also

took

> me off the mtx about two weeks ago. He said I should not stay on

such strong

> meds if they are not working. He put me on Lodine twice a day, an

> anti-inflammatory and I am better then I have been in months. The

pain has gotten so much

> better. I don't quite understand but I have to go back to him in

about a week

> and a half. He said that maybe I don't have PA and that it is

fibromyalgia

> and osteoarthritis. I don't know what to think.

> Janet

>

> Wow Janet,

Do you think the Enbrel and MTX made your pain worse or just that you

needed the Lodine all along and hadn't had it before?

> Whatever the reason I am glad you are feeling better!

Marti