Re: America On Lyme Newsletter

[Guest guest]

I would like to subscribe to your aol newsletter. My e-mail address is:

WISHXXX@...

thank you so much

[Guest guest]

Hi to all:

I'm so happy to see this newsletter with so much information. It really has

opened my eyes and now I'm busy trying to inform all of my friends what a

terrible disease Lymes can be. Besides not having a reliable method to find

out if you've got it, there seems to be no best treatment.

I am not affected by Lymes but my Mother-in-law is now taking 14 days of IV

Rohcephin. She will be finished on Oct 11. From there we don't know what her

DR will be doing.

Mom was dxd with ALS in Oct 97, after having various DR's giving various de's.

She had been told that she had carpal tunnel, pinched cervical nerve,

arthritis and various other problems until finally they said must be ALS.

Through the Internet I found info regarding Possible Lymes Disease and I

encouraged her to go to her regular DR with that long paper that some Dr. B

has written about Lymes and that it can mimic ALS. Well, she did test

positive for Lymes so he began this IV treatment. We don't know where this

will be going from here, but needless to say we would hope that it's Lymes

that has caused all her problems and not ALS. She does live in an area with

known deer tick infestation. She has always had dogs and they have brought

ticks home.

Can a person get Lymes from removing ticks that are engorged with blood from

their animals? How large do these ticks get when they are feeding? I have

seen huge wood ticks on my friends dog that were the size of a lima bean full

of blood. Do deer ticks get that large?

I have a limited amount of time to spend on this, as I am also taking care of

my elderly Mom who has come to live with us. We are building a handicap

accessible home so that my Mother-in-law can live with us too. Her disability

right now is that she has no muscle in her right wrist and fingers. She is

walking very stooped over but this is just the last few weeks. She is

extremely tired and emotional.

Since she started the IV antibiotics she has had a marked increase in her

fatigue and feels hot all the time even though she has no fever. Also her

urination has increased considerably. My Mother-in-law is still living on her

own with help from friends. I am unable to help much as she lives 130 miles

away in a very small rural town.

Once again, thanks for all the news regarding Lymes disease. I just wish that

more people would be informed of this terrible illness. You can bet that I'm

going to be talking about it to my friends and warning them of the magnitude

of problems one little tick can cause, and telling them to be extremely

careful when they are on their camping trips and hunting trips.

Hoping for a cure for both Lymes and ALS

Diane CDBass1@...

[Guest guest]

Hi Diane,

Welcome to the list, first let me tell you I think you are wonderful to

be such a comfort and advocate for your Mother-in-law's health. Does she

appreciate you too? I sure hope so. Please do spread the word about Lyme

disease (No " S " ). We need to warn as many as possible how awful this

disease can be if untreated promptly. To answer some of your questions.

It is possible for someone removing engorged ticks from a host, to

contract Lyme disease, if they have open cuts in their hands. I believe

Willy Burgdorger, who discovered the Bb (Lyme bacteria) got Lyme from

splashing urine from an infected mouse in his eye.

Fully engorged deer ticks are about the size of a pea, or a pencil

eraser, I think an engorged tick the size of a lima bean would be maybe a

dog tick, or some other species. There are studies that have shown dog

ticks carry other diseases, and some say Lyme too, but I can't site any

particular report off the top of my head...anyone else???

I believe Colby has already mentioned that 14 days of IV antibiotic are

not enough so I will not comment further about that. It doesn't sound like

your Mother-in-law is seeing a very Lyme literate physician. Maybe if you

could share with us the state you live in, we could help you find a good

doctor.

You mentioned you read Dr Burrascano's Lyme protocol, and that prompted

you to have her tested, have you shown this to the doctor who is treating

her?

I am in the same boat as you are, my elderly in-laws will be moving from

Texas to NJ to be near us, we will be selling our home and looking for one

with an in-law suite. My own parents are about 20 miles away, Dad had a

stroke and is not well, but fortunately Mom is in good health. Makes me

wonder sometimes if I should look for a tri-plex!

No fun getting old...is it? Unless you are healthy!

Please keep us updated on how your Mother-in-law is coping, and do try to

find a more Lyme literate doctor, if her present doctor will not consider

more IV.

Best to you,

Marta

-

[Guest guest]

Dear Marta and Colby:

Thank you so much for responding to my inquiries regarding my Moth-in-Laws 14

days of IV treatment. Her Last day of treatment was today and her DR just

told her to make an appointment after she had all the IV's.

Yes, I think you are right in saying that she probably does not have a very

Lyme literate Dr. She had taken a copy of DR B's protocol to him and asked him

to read it. When she contacted him a week or so later he said that he found

it very interesting and then he agreed to do the testing for Lyme. I am

grateful at this time that he seems to have a very open mind regarding

treatment. I wish there was more documentation that I could mail to him

regarding antibiotic treatments, or possibly have someone he could contact

himself, although I don't know just how interested he is and how much research

he would like to do. This is a very small town, , WI with a population

of about 1300. The Hospital there has 16 beds. The Neurologist that she has

there comes once a week from Madison, WI. She also gave the neurologist DR

B's report and told him that she tested positive for Lyme and she would be

receiving the IV treatment. He told her that he would give her a party if

indeed she did get better and wished her the best. He also said that her ALS

hasn't progressed in a " normal fashion " and since her symptoms began more than

5 years ago, she should have been dead by now. Thankfully she is still with

us! I am hoping that we are opening a few eyes in the medical world so more

research can be done regarding Lyme disease.

PS to Marta

Yes, my Mom-in-Law does appreciate everything I try to do. My husband is very

supportive also by allowing me to use his computer to access the Internet.

This is all very new to me and I'm such novice, but I'm learning by trial and

error. Thankfully I haven't messed up any of his programs he needs for work

or I'd probably be banned from this machine for life. He knows nothing about

the Internet or E-mail and I know nothing about his DOS or Quicken or whatever

else he does here.

I don't feel like we are doing anything extraordinary by having both of our

Mom's come to live with us and I being their caretaker. I am grateful that we

will have time to be together. There are so many others who haven't been able

to be close to their parents. We are blessed. When my Mom's DR said she

could no longer live alone, there was no question that she wouldn't be with

us. When my husbands Mom was told she had ALS, there was no question that she

wouldn't be with us. We are so thankful that we will be able to have this

house completed soon and we can start to enjoy our " group home. "

PPS Our son is to be married in April to MC COY. Maybe we'll be

related!

Thanks again for all the wonderful support on this newsletter

Diane

[Guest guest]

Hi Diane,

I am so glad your mother-in-law appreciates you, you sound like a

wonderful caring person. And as for your son marrying into the McCoy

family, yes, maybe we will be related by marriage...it is a small world.

Thanks for telling us where about you live, I know of a Lora Mermin, who is

active in the Wisconsin Lyme community. Here is her email address:

smermin@..., you can mention I referred you. Please write to

her, and ask if she is aware of any Lyme docs in your area. Lora, is the

editor of a wonderful book called " Lyme Disease- 1991 " It is a compilation

of newsletters from that time. An excellent read, it is available at

libraries only at this time. Maybe you would want to check with your

library. I have read it a few times, and I am always amazed at how little

progress we have made during the 7 years since it was published. Back then

they were still discussing the same things we are now...even Hyperbaric

Oxygen treatment was mentioned then. Nothing new under the sun I guess.

Please contact Lora, she is a wonderful person, and a support group leader

in her area. Let me know how you make out.

Marta

[Guest guest]

lYME PATIENTS: I supose most of you know of the lab in California, called

IGENEX Labs in Palto Alto, California. They do the most accurate, and

probably one of the only urine antigen tests around that is worthwhile. Your

physician can call and they will send out the kit. You must have been off

antiobiotic for awhile, then on med for 5 consecutivite days, capturing the

first morning mid sample on day 4, 5, 6, freezing in tubes supplied and

overnighted back. I have been treated for 9 years, and have only had one

positive western blotl.........only way to diagnose me was with urine antigen

because my body was so ill it couldn't make antibodies. Don't take Drs. word

for it if they say lyme test is negative......I would be dead if I had done

that.

good luck , gail

[Guest guest]

Dear and Lorraine:

I read with interest Marta's reply to your letter. I have done alot of

reading like most of us, but recall a story about a physician out in the

midwest who did a study on MS patients. It seems that he took MS patients and

treated them with intervenious long term antiobiodics. He had wonderful

results, one patient who had been in a wheellchair for 23 years, was walking

at the end of three months. He also did a study on patients with alheizimers

(sp?) disease. One man was totally unresponsive and would just stare at a

wall. His blood titers showed lyme disease however, and he was talking and

responding after antiobiodic therapy. I'm no doctor, but frankly, if I was

diagnosed with MS, knowing all I know now, I would want a recommended

treatment of antiobiotics for a minimum of three months... see what happens.

It sure beats waiting longer and wondering if you could have stopped the

progression of this awful disease. There are medical people in some circles

who believe MS and alheizmers are shoot offs of a tick bite in people who's

body couldn't fight the spirochete themselves and that was the " weakest link " .

kind of thing. Do you know that MS is only active in areas where the ticks

are also?

Good luck,

Gail

[Guest guest]

In a message dated 10/13/1998 11:26:47 PM Eastern Daylight Time,

IAMAVIPTWO@... writes:

> lYME PATIENTS: I supose most of you know of the lab in California, called

> IGENEX Labs in Palto Alto, California. They do the most accurate, and

> probably one of the only urine antigen tests around that is worthwhile.

> Your

> physician can call and they will send out the kit. You must have been off

> antiobiotic for awhile, then on med for 5 consecutivite days, capturing the

> first morning mid sample on day 4, 5, 6, freezing in tubes supplied and

> overnighted back. I have been treated for 9 years, and have only had one

> positive western blotl.........only way to diagnose me was with urine

> antigen

> because my body was so ill it couldn't make antibodies. Don't take Drs.

> word

> for it if they say lyme test is negative......I would be dead if I had

done

> that.

> good luck , gail

>

>

Hello Gail:

Is it true that the urine antigen test costs $299 and is not covered by

private insurance or medicare? Was your test paid for by your insurance?? Does

anyone know the answer to these questions for me?

I would appreciate the info!

Sincerely and God Bless,

Fransea

NJ Seashore

[Guest guest]

Hi, I read with interest your letter and would like to comment to you about

your mother - in -laws treatment. My physician (in NJ, who specialized in

lyme and addressed the US Congress on Lyme disease (no plural) ) is very

knowledgeable.

The short duration of anitiobotic treatment recommended by your DR is too

short.

The life span/cycle of the spirochete is six weeks. You must take the meds

much longer than one life cycle.

Also, those large ticks are dog ticks, and not deer ticks, however, the deer

ticks can be there also, because the deer tick is so small is looks like this

period. and that is when fully matured. The nimph is smaller and

transparent...impossible to see. You can get lyme disease even if you dont go

out of your house. someone could have one on the cloths they are wearing etc.

etc. You can also get lyme disease from the urine of an infected

animal....as well as green head fly bites etc. The area of infection is

growing. If I can be of any further help to you, please let me know. My mom

is suffering with this too as well as myself and my Mom.

Good luck and God bless,

Gail

[Guest guest]

Fran,

First I would like to say thank you for e-mailing me info about the doctor in

NewJersey. Second I had the urine tests done. Yes they are expensive, but my

insurance covered 80% of the costs.

Take care,

[Guest guest]

Just a short update: My Mother-in-law's DR has put her on an additional 14

days of IV treatment. She completed the first 14 days Oct 11. She has noted

a small return of function in her right hand which is the most affected. We

are hoping for other signs of remission during the next phase of treatment.

Thanks to all for the continued support. This Lyme-aid newsletter is a

godsend.

Diane

[Guest guest]

Dear Gail,

Thanks for your kind note. Your stories of other MS patients was both

interesting and encouraging. After doing extensive reading on both MS and

Lyme, I think anyone diagnosed with MS owes it to themselves to try to check

with a lime literate doctor. I finally found one a couple of hours away and

my first appointment will be next Tuesday. Your message came at a good

time. I was beginning to feel a little uneasy about going...I'm convinced

that its a smart idea, but I still can hear the disgust in the voice of my

regular doctor as he remarked that " your problem is that your read too

much " , and the voices of some other MS victims who insist that I'm just in

denial and have to accept my MS diagnosis. (The funny thing is that Lyme

seems worse to me than the MS). After reading your note I feel more

comfortable with my decision to investigate a possible lyme diagnosis.

Unfortunately I started with three strikes against me when I first started

to have symptoms that forced me to a doctor: I live in the south where lyme

isn't prevalent, I went to a southern doctor whose wife had MS, and he sent

me to a southern neurologist who turned out to be the head doctor for the

state MS society. I don't think anyone ever gave the slightest thought to

anything other than MS. I know no one asked me if I ever lived up north

(many years), if I participated in outdoor activities (hiking, camping, and

years of study of wild foods that kept me traipsing in thick underbrush), or

if I ever had a tickbite (at least three that I can definately recall). The

diagnosis was made so quickly that I have never felt confident with it.

Strange unMS-like symptoms (TMJ problems, knee problems, heel problems, rib

pain, etc.) led me on an internet search which led me in a million different

directions, but always came back to Lyme. I certainly don't think that a

good dose of antibiotics can hurt me, and it just might help a lot...just as

in the cases in your note. I just hope that this new lldoctor will feel the

same way. Thanks again for the encouragement. Raine

(By the way, I like your email address!)

At 11:32 PM 10/13/98 EDT, you wrote:

>From: IAMAVIPTWO@...

>

>Dear and Lorraine:

>I read with interest Marta's reply to your letter. I have done alot of

>reading like most of us, but recall a story about a physician out in the

>midwest who did a study on MS patients. It seems that he took MS patients and

>treated them with intervenious long term antiobiodics. He had wonderful

>results, one patient who had been in a wheellchair for 23 years, was walking

>at the end of three months. He also did a study on patients with alheizimers

>(sp?) disease. One man was totally unresponsive and would just stare at a

>wall. His blood titers showed lyme disease however, and he was talking and

>responding after antiobiodic therapy. I'm no doctor, but frankly, if I was

>diagnosed with MS, knowing all I know now, I would want a recommended

>treatment of antiobiotics for a minimum of three months... see what happens.

>It sure beats waiting longer and wondering if you could have stopped the

>progression of this awful disease. There are medical people in some circles

>who believe MS and alheizmers are shoot offs of a tick bite in people who's

>body couldn't fight the spirochete themselves and that was the " weakest link " .

>kind of thing. Do you know that MS is only active in areas where the ticks

>are also?

>Good luck,

>Gail

>

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

>Help support ONElist, while generating interest in your product or

>service. ONElist has a variety of advertising packages. Visit

>/advert.html for more information.

>

>

[Guest guest]

SEAFRAN731@... wrote:

>

> From: SEAFRAN731@...

>

> In a message dated 10/13/1998 11:26:47 PM Eastern Daylight Time,

> IAMAVIPTWO@... writes:

>

> > lYME PATIENTS: I supose most of you know of the lab in California, called

> > IGENEX Labs in Palto Alto, California. They do the most accurate, and

> > probably one of the only urine antigen tests around that is worthwhile.

> > Your

> > physician can call and they will send out the kit. You must have been off

> > antiobiotic for awhile, then on med for 5 consecutivite days, capturing the

> > first morning mid sample on day 4, 5, 6, freezing in tubes supplied and

> > overnighted back. I have been treated for 9 years, and have only had one

> > positive western blotl.........only way to diagnose me was with urine

> > antigen

> > because my body was so ill it couldn't make antibodies. Don't take Drs.

> > word

> > for it if they say lyme test is negative......I would be dead if I had

> done

> > that.

> > good luck , gail

> >

> >

> Hello Gail:

> Is it true that the urine antigen test costs $299 and is not covered by

> private insurance or medicare? Was your test paid for by your insurance?? Does

> anyone know the answer to these questions for me?

> I would appreciate the info!

> Sincerely and God Bless,

> Fransea

> NJ Seashore

>

hi fransea:

i recently had the luat and it was done through lab corp. only to find

out that prudential ins. (my company now) does not use lab corp. any

longer, and now i may have to pay for the test myself. my insurance

company now uses smith kline, who will not do luat's, i'm told????

i'll let you know how i eventually make out..

kathie

> ------------------------------------------------------------------------> Help

support ONElist, while generating interest in your product or

> service. ONElist has a variety of advertising packages. Visit

> /advert.html for more information.

[Guest guest]

Dear Raine,

I like you believe it's only smart to " rule out " other possibilities for

being ill. I just didn't know 20 years ago when the joint pain

started that Lyme could cause my symptoms. Then for 20 years

I thought all the normal blood tests would show up if there was

something else wrong with me. Finally, for the last 8 years of

chronic pain, I trusted that my pcp had had those tests done as I

truly didn't understand it took special tests and or special doctors

to determine Lupus or Lyme. Finally, after my pcp fired me as a

patient I self referred myself to pain management group. It just

so happened that this group of pain management doctors was

treating the Lyme patients of a Lyme literate physician so had some

Lyme awareness.

The pain management physician I saw asked me if I would mind

being checked out for Lyme to " rule it out " as a causative factor

in the chronic pain so limiting my life. And, the rest, as they say,

is history. I do have Lyme and am finally receiving treatment for

it at least 20 years after onset if not longer. Had I known at any

time in all of these years that special testing and special physicians

were required to correctly diagnose and or treat Lyme, I would

have had the testing performed long ago. The public awareness

of Lyme is so very sadly lacking.

This is what concerns me so very much. I've had so many different

diagnosis over the years that I cringe at the stupidity of the people

who call themselves doctors who apparently did not ever read their

mail or keep up with medical information through journals and the like.

I've been diagnosed with Sarcoidosis, Myofascial Pain Syndrome,

Fibromyalgia Pain Syndrome, Structural Body Damage, Myositis,

and Chronic Pain Syndrome. Of course there have been the hidden

diagnosis as well, like " drug seeking " , and other less lovely things.

It will never cease to amaze me that physician's can be so arrogant

and or irritated by their patients learning about their " supposed "

illness from the internet. I am of the opinion, any physician who feels

threatened by what a patient is learning on the internet about the

conditions they have been determined to suffer with and or other

conditions that mimic the ones they've been diagnosed with, are

extremely insecure people and not the type of physician I would

choose to remain treating me for any reason.

The good ones don't wear white hats or anything so obvious, but

it's been my experience, (limited I admit) that the good physicians

welcome new information and will freely discuss your condition with

you and if you have questions, are willing to talk with you about them.

Only the ones who are insecure, and in my opinion, less likely to be

a physician that I need, slam the door on information whatever the

source may be.

I started out in cyberspace as a member of alt.med.fibromyalgia

and it was wonderful to find so many people suffering with the same

kind of problems I had. I had a FMily as they say, and it was quite

wonderful to be able to communicate with others who understood

the problems of having an invisible illness. I don't recall ever even

reading in the times I've been a member of that news group, about

the possibility that FMS could be diagnosed incorrectly instead of

Lyme disease. Or, that both FMS and Lyme disease could exist

together and do not negate each other. Now, I know differently

and at times do my best to share information and educate in other

forums. But, what I've found is that all too often, people have

finally received a diagnosis instead of being believed to be

hypochondriacs, and they are extremely reluctant to consider other

possible options for their illness, holding on instead to a diagnosis

that may be incorrect or may not be complete as was true in my

situation. I still have FMS as the undiagnosed and untreated Lyme

can cause FMS, which is true for me. I just wish that my own

peers were not so closed minded because I believe there are far too

many people who have received other diagnosis like FMS, MS,

Lupus, CFS, and so on, who may have Lyme as the underlying

disease causing these other conditions or mimicking them and thus

they are not receiving the effective treatment they need and continue

to decline.

I'm not sure which diagnosis is worse MS or Lyme, just that often

it's difficult to tell the difference. And, quite possibly, as I've been

reading recently, MS may be caused by a spirochete too. Or, may

be at one end of a spectrum of disease with Lyme on the same

spectrum. There's so much the medical community does not know

and certainly we owe it to ourselves to learn all we can about the

medical tags placed upon us. I finally have learned that in the end,

I must accept the ultimate responsibility for the kind of medical

care that I receive. Therefore, I am doing all in my power to

become an informed consumer patient.

Wishing us all health and freedom from pain,

both physical and emotional -

[Guest guest]

Hear, hear! Very well said, !

In a message dated 10/15/98 3:34:28 AM Eastern Daylight Time,

swsftwtx@... writes:

<<It will never cease to amaze me that physician's can be so arrogant and or

irritated by their patients learning about their " supposed " illness from the

internet. I am of the opinion, any physician who feels threatened by what a

patient is learning on the internet about the conditions they have been

determined to suffer with and or other

conditions that mimic the ones they've been diagnosed with, are extremely

insecure people and not the type of physician I would choose to remain

treating me for any reason.

The good ones don't wear white hats or anything so obvious, but it's been my

experience, (limited I admit) that the good physicians welcome new information

and will freely discuss your condition with you and if you have questions, are

willing to talk with you about them. Only the ones who are insecure, and in

my opinion, less likely to be a physician that I need, slam the door on

information whatever the source may be. >>

[Guest guest]

Dear Raine,

I wanted to reply to your letter because I so resonated with it ans

because I needed to hear it. to try to shorten a very long story (as most of

us have); I, too, am from the south. I was diagnosed ten years ago with LD.

I had trouble finding a doctor in Atlanta to do the test. Fortunately, the

Elysa was positive for LD. At the same time I had an MRI that was consistent

with MS. My doctor treated me with IV rocephin for six weeks all together.

Emory was doing MRI's for free because they wanted to see what LD looked like

(good for Emory). After the first two weeks of Rocephin, my MRI

completely cleared. Symptoms cleared. Then tey came back a few months later.

I had another 4 weeks of Rocephin. I know now that I was herxing. My doctor

didn't know anything else but Steere's protocol. This was new ground for all

of us. She decided it was LD coincidental with MS.

I relocated and kept thinking I would look into the LD when I could find a

doctor or,at least, some one else with it. I found the NG a few years ago and

got all the info I could. Fortunately, my family doctor is wi

[Guest guest]

LAB CORP.......the worst for lyme testing......use to be met path....

[Guest guest]

I am quite excited today as I just spoke with a secretary for an assistant

Prof of radiology. I was asking if the DR might be able to tell Lyme disease

in an MRI as my Mother-in-law had several done by him as part of an ALS study.

The secretary said that the DR was quite interested in any relationship there

might be. Anyway I sent him a bunch of websites to look at some of this Lyme

stuff. Maybe he can find some connection. Anyway it's one step closer for

Lyme awareness.

[Guest guest]

Nicely written!!!! I have found through this that I am my own best advocate.

We all need to take control over what we let the docs put into our bodies, or

the lack of what they are willing to put into our bodies. I have decided that

when I get a dx I will become an advocate for all of us who have suffered not

only from the ailments of our deteration but from the mental distress and

anguish that some doctors put upon us while holding the ins COs hand. I have

found throughout life there is strength in numbers so lets all stick together

and let the world know through editorials in the paper, a march on Washington,

DC and talk shows the madness behind the scenes and in our country with proper

healthcare. WE CAN ALL MAKE A DIFFERENCE!!

Amy

[Guest guest]

Terrific!

CDBass1@... wrote:

> From: CDBass1@...

>

> I am quite excited today as I just spoke with a secretary for an assistant

> Prof of radiology. I was asking if the DR might be able to tell Lyme disease

> in an MRI as my Mother-in-law had several done by him as part of an ALS study.

> The secretary said that the DR was quite interested in any relationship there

> might be. Anyway I sent him a bunch of websites to look at some of this Lyme

> stuff. Maybe he can find some connection. Anyway it's one step closer for

> Lyme awareness.

>

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

> Help support ONElist, while generating interest in your product or

> service. ONElist has a variety of advertising packages. Visit

> /advert.html for more information.

[Guest guest]

Hi : I don't know how to do this without replying to your letter either, new

to this list. I guess I should introduce myself. But first, I want to tell

Fran that the test isn't covered by my insurance.. And it is expensive, it

costs about $70 for each vile of urine tested, and dr. likes to do a three day

test. Igenex has tried to get my insurance company to pay, but no luck. I'm

interested in the news, but don't know how to respond to this volume of email

I receive on this network. Some of it seems to be duplicates. what am I

doing wrong? Gail in PA