Re: Welcome to @onelist.com

[Guest guest]

Hello, all:

I am also new to this list and am in awe of the response it has received.

It is wonderful.

I have just realized something and wonder if anyone else has had a

similar thing happen to them. I have had Lyme disease for over 6 years and do

fine on antiobiotics and then seem to relapse after about a year of being

symptomless. My last regime of antiobiotics involved Biaxin and

Plaquenil....the plaquenil was new for me. I took that combo for 6 months. I

have now been TOTALLY symptomless for 5 months.....I usually have " little "

things returning within that time. It just dawned on me recently that I now

only started on the Biaxin/Plauenil combo but also one month prior to that

went on hormone replacement therapy. I am wondering if some of my symptoms

were actually attributed to menopause or could hormone replacement actually

enhance the affectivness of the antiobiotics? Just a thought.....any ideas?

Thank you,

Mona

[Guest guest]

Hello,

I would like to introduce myself to the list, but I am new at this and would

appreciate some help.

Thank you,

Sonya

> [lyme-aid] Welcome to lyme-aidonelist

>

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[Guest guest]

Hi Mona, my name is Amy and I am still in the trying to a dx stage. I never

have seen anyone touch upon the aspects of what how their symptoms changed in

the beginning. I have been suffering from what I believe is lyme disease

since last Feb, in which I started with a horrific headache, since then I have

had a numb face, numbness and tingling throughout my whole body, ( different

areas at different times) major memory loss, muscle spasms, muscle fatigue,

emotional distress, ect...the list goes on and on. I have had so many

different symptoms that I can't even begin to write them all down because I'd

need at least 24hrs straight for typing lol.

I am curious to see how normal it is with lymes disease to have symptoms come

and go so often, heck every once in a while I actually have a pretty good day,

or what seems to feel like one because the symptoms are not as bad as they may

have been yesterday. I am now experiencing major stiffness and joint pain,

which has only started the last month. Can you shed some light on this issue

for me??

Thanks

Amy

[Guest guest]

Hi Marta my name is Vaerie. I recently joined this list and noticed all of

your messages and replys to people. I wanted to thank you for being so active

and commend you on all of the info you are sending people. this list is

great.It is so nice to know we are not alone in fighting this disease. You

seem very knowledgeable and I wanted to ask you this question. Do you know

anything about hyberbaric oxygen and if any chambers exist in New York or Long

Island? I recently visited one in Ft. Lauderdale Florida and was considering

trying it (especially if one is closer) Please write me back if you get a

chance. I know you are very busy with all these e-mails

[Guest guest]

hi My name is I too have had Lyme for over 5 years and have the exact

same sequences of relapses as you I have been better for periods of up to a

year and a half only to relapse again. I might start on biaxin and plaquinel

soon and was wondering if you could tell me what hormone replacement therapy

is and if you found out any additional information on it and it possibly

affecting antibiotics. I pray that you remain symptomless forever!!!! People

have been cured!!

[Guest guest]

<<they handed out a list of possible

symptoms relating to menopause and I was amazed as how many of them are

also

on the Lyme disease list. There seemed to be a correlation in my case.

I was

very surprised to find things like chest pain, shortness of breath,

muscle

aches on the menopause list....I have had them all along with others.>>

This is why I was so long in going to the Dr. with my symptoms, I

thought it was just the discomfort to be written off to menopause. It

wasn't until I go stuck in the middle of the stairs and couldn't go up

or down the steps that I thought I better go see what the heck was going

on. By then I had almost completely forgotten the bites. (How self

protecting are these spyro-gyros.)

<<I had gone away for a 5 days and didn't

deep up with my regime.....so I suffered two days after I got home for

being

absentminded.>>

For this reason alone, one should never underestimate the value of a

bottle brush and keep it close at hand! UGH! Who said that?

Oh, well...

D.

[Guest guest]

Hi, Vallerie:

I was taking estrogen continuously and then I would take progesterone on

the first through the tenth day of each month. Within a couple of days I

would get my period ( albeit much lighter than normal). I had also gone to a

seminar regarding menopause in which they handed out a list of possible

symptoms relating to menopause and I was amazed as how many of them are also

on the Lyme disease list. There seemed to be a correlation in my case. I was

very surprised to find things like chest pain, shortness of breath, muscle

aches on the menopause list....I have had them all along with others.

I was taking 500 mg. of Biaxin twice a day and the plaquenil twice a day.

I never had any adverse reactions to either. I have taken the Biaxin

many times before......I live on acidopholous (sp) when I even " Look " at a

bottle of antiobiotics LOL. In the 6 years, I only had one yeast infection

and that was definitely my fault. I had gone away for a 5 days and didn't

deep up with my regime.....so I suffered two days after I got home for be

adsentminded.

I hope the biaxin/plaquenil works for you.

Keep in touch,

Mona

[Guest guest]

Hi Val,

Welcome to the list, I am sorry for the delay in responding, but you have

Lyme disease, so I guess no explanation is necessary, other than good days,

bad days.

As for HBOT studies, Bernsten has a web page devoted to this

treatment that has some good information, patient accounts of how it worked

for them, and some links to other websites. Here is the url:

http://www.connix.com/~berntsen/hbot.htm.

My friend and local support group leader, Jane Chapman tried HBOT, she

told me yesterday that she would be willing to take telephone calls from

anyone interested in her story. Her telephone number, here in NJ is:

609-629-2446. I believe you can find where the HBOT treatment centers are

either through Jane or 's webpage.

As for my knowledge of Lyme disease, honestly, all I know about it, you

could put on the head of a pin, this list was created to share information,

encouragement and support. Many on this list are much more knowledgeable

and I am so grateful for them.

Marta

> Do you know

>anything about hyberbaric oxygen and if any chambers exist in New York or

Long

>Island? I recently visited one in Ft. Lauderdale Florida and was

considering

>trying it (especially if one is closer) Please write me back if you get a

>chance. I know you are very busy with all these e-mails

[Guest guest]

Thanks for the info! This list is really great

[Guest guest]

Hello my name is Sandy and I live in Plano Texas. I am new to Lyme. At least

that is what my internist thinks I have but he won't treat it since the titer

he took was negative and he said he is not familiar enough to make a clinical

diagnosis. He would like me to see an infectious disease specialist, who I can

not even get into to see for 3 weeks. This is not the best area to be dealing

with Lyme since it is relatively unknown here.

The doctor believes I contracted Lyme in Massachusetts/Maine/New Hampshire all

three places are endemnic and I was walking through the woods, fields and at

the beach in early August. A couple weeks following that I started having

severe pressure, numbness and tingling in my head. They did all sorts of MRI's

and other tests and could not come up with a cause. Eventually that got a

little better and life went on. Then a couple of weeks later I started to have

severe chest pressure that would not go away. Again, they did some tests but

no answers. The only thing it showed is that my CPK levels were through the

roof. I then started getting various aches and pains in my neck, back and

arms. The chest pain is still severe and is aggravated by any exertion

including exercise. Therefore my life is sort of on hold until I can get

treated for something.

This has been very frustrating since I went from being a very active/healthy

37 year old with 5 children who have very active lives. I think the hardest

thing has been the lack of care and concern from the medical community. But,

from everything I have read that is not a unique experience.

I am currently trying to track down a doctor in the Massachusetts area and I

am thinking of flying up there to try and get someone that is familiar with

Lyme to work with me.

Thanks for inviting me to join your list.

Sandy

[Guest guest]

Dear Sandy: Welcome to the list. Where in New Hampshire were you? I

got my lyme in New London in August.

Lovette

[Guest guest]

Sandy, I would love to keep in contact, I live in Maine, and want the docs to

know that lyme is in our area, keep me informed.

Thanks

Amy

[Guest guest]

In a message dated 10/29/98 8:38:34 AM CST, SkiMeSto@... writes:

<<

Hello my name is Sandy and I live in Plano Texas. I am new to Lyme. At least

that is what my internist thinks I have but he won't treat it since the titer

he took was negative and he said he is not familiar enough to make a clinical

diagnosis. He would like me to see an infectious disease specialist, who I

can

not even get into to see for 3 weeks. This is not the best area to be dealing

with Lyme since it is relatively unknown here. >>

You're right, not much experience here in Texas. I'm in Houston.

Seems like I have read that there are a few LLMD in the DFW area. I also

believe there is a support group there. Can't guide you any further than

that.

[Guest guest]

Hi Marta and Harry,

Thank you for the wonderful welcome. I turned on my compter and there were 15

E-mails. How cool, from Lyme patients just like me. I already send a note

before I even read your nice welcome. Hope it was OK. As time goes on I will

tell everyone my story. I have had Lyme for 5 years and hope I can help

others get through some of the very tough days that still keep popping up.

Anyway, Thanks so much. I am glad I joined. Connie Cslyme@...

[Guest guest]

Hi. I'm back after an absence of several weeks...and I really missed

keeping up with the posts. You probably won't remember me, but I am the gal

from Mississippi who had been diagnosed with MS but felt her symptoms were

more in line with Lyme. members were very supportive and provided

a lot of sources of information. I followed up, getting an address of a

lyme specialist in Mobile, Ala from the Lyme Disease Foundation. He was a

really great guy, and proceeded immediately with the case history and the

blood tests. My test came back with a lot of suspicious activity on the IGG

bands although no antibodies were found. This didn't surprise the doctor

since my tick bites were over 20 years ago and he felt that it would be

improbable to have a positive antibody reaction on the blood exam at this

point. He examined every aspect of my case and felt it was very unlikely

that I had MS (!!!) and was pretty convinced that lyme was the cause of my

problems. I can't tell you how elated I was to finally have my suspicions

confirmed and the ill fitting MS label removed!! I am now taking my first

course of oral antiobiotics, Bioxin, to see how I do and if we're on the

right track. A herx reaction would be more physical proof. The doctor feels

that if all goes as he expects that I might be a good candidate for

hyperbaric treatments, possibly as early as six months (??), and he

anticipates that I will feel a lot better soon. At any rate, I feel much,

much better after less than a week of antibiotics. I don't know if this is

just euphoria after years of searching for answers (and never really

following the expected MS diagnosis/scenario, and having my regular doctor

complain that I just " read too much " ...needless to say, he is no longer my

doctor), or whether the antibiotics are really helping. Regardless, I

wanted to sincerely thank all of you for your encouragement and your help.

If it hadn't been for the support and information you all offered (thank

goodness for the internet!!), I probably would have labored under the MS

burden and eventually been talked into expensive MS treatments that would

have done no good, and possibly a lot of harm. My very sincere thanks.

Raine Strom (desraine).

[Guest guest]

Good for you, finally on the right track after all this time. It's amazing

what a good doc can do for you. I have been through the route of MS and am

still not a complete confirmed lymie, but tested positive for babesia, and had

started on lyme meds a week before having to go off them to treat the babesia.

Believe I was herxing after about only 36 hours of meds in me. Well keep us

posted.

Hugs

Amy

[Guest guest]

Dear Lorraine, Your story sounds just like mine. I too was glad to hear

that I had Lyme Disease after being diagnosed with MS. Luckly I was treated

for the Lyme and have been doing okay since, not wonderful but okay. My

daughter on the other hand has had Lyme for 11 years, been treated and

treated, and just seems to get sicker and sicker. Is now almost unable to

walk and is in uncontrolable pain. We are putting her in the Hyperbaric

Chamber starting on Jan. 25, 1999.

We don't know what else to try. I would love to hear any one else's

experiences with the chamber. What is the treatment plan for you Lorraine?

Thanks Meg

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[Guest guest]

Hi just wanted to let all of u know i had unsubcribed from the list about a week

ago

due to probems with my server i had to change servers so now i resubcribed with

my

new address. it gizmo@... glad to be back sue

lyme-aid-owneronelist wrote:

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>

> Welcome to the list. Please take a moment to review this message. You

> may want to save this email so you can refer back to it at a later time.

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[Guest guest]

--- lyme-aid-owneronelist wrote:

> Hello,

>

> Welcome to the list. Please take a moment

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> may want to save this email so you can refer back to

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[Guest guest]

rebecca.....glad u took my advice welcome to our little piece of

mind.......we support all who enter...........

Reid

[Guest guest]

i have LD via a western blot positive. i have felt like a 100 year old

woman for one year now (arthritic lyme). my current problem is that i have

an appointment w/2 drs., both 4 - 6 hours away from my house. can any one

give me a thumbs up or down on either a dr. swartz at john hopkins or a dr.

george leon in waldorf, md. i need aggressive LONG TERM antibiotic

treatment, not a quickie dose of doxyc. thanks for any input.

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

Hi, Marta

I am compiling a list of Southern LLMd's, so if anyone knows any, please

e-mail me directly with any information! I've heard good things about Dr.

Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with the

NIH that treats chronic LD patients, and is supposedly the best LLMd you can

get in this area.

In a message dated 5/13/99 6:12:46 AM Eastern Daylight Time,

mlmccoy@... writes:

> I do know that a Dr Berg in MD, is a terrific Lyme doctor.

[Guest guest]

Hi Mimianne,

I have not heard of either of these doctors, but I do know that a Dr

Berg in MD, is a terrific Lyme doctor, if you need more information about

him, drop me an email.

Welcome to the list, I am sure you will find lots of support and

information here.

Best to you,

Marta

>From: mimianne@...

>

>i have LD via a western blot positive. i have felt like a 100 year old

>woman for one year now (arthritic lyme). my current problem is that i have

>an appointment w/2 drs., both 4 - 6 hours away from my house. can any one

>give me a thumbs up or down on either a dr. swartz at john hopkins or a dr.

>george leon in waldorf, md. i need aggressive LONG TERM antibiotic

>treatment, not a quickie dose of doxyc. thanks for any input.

[Guest guest]

Hi ,

I know my friend Patty sees a Dr Berg in MD, I will write her and ask for

his phone number and address.

Hugs,

Marta

-

>From: FIG4159@...

>

>Hi, Marta

>I am compiling a list of Southern LLMd's, so if anyone knows any, please

>e-mail me directly with any information! I've heard good things about Dr.

>Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with

the

>NIH that treats chronic LD patients, and is supposedly the best LLMd you

can

>get in this area.

>

>

>

>

[Guest guest]

i have been given several " lyme leads " to drs. in va and west va. i called

approx. 25 and only received " we are not accepting patients " , or " well yes i

am sure we can treat that ... yes we have seen a hand full in 5 years " . i

know of 0 in these states but if anyone can set this record straight please

post it!!!

an infectious disease specialist in roanoke, va told me i was experiencing

" lyme hysteria " and based upon my symptoms (thes lyme ones that is) i did

not have this disease (even though i had a positive western blot).

From: FIG4159@...

>

>Hi, Marta

>I am compiling a list of Southern LLMd's, so if anyone knows any, please

>e-mail me directly with any information! I've heard good things about Dr.

>Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with the

>NIH that treats chronic LD patients, and is supposedly the best LLMd you can

>get in this area.

>

>

>

>In a message dated 5/13/99 6:12:46 AM Eastern Daylight Time,

>mlmccoy@... writes:

>> I do know that a Dr Berg in MD, is a terrific Lyme doctor.

>

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MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301