New subscriber

October 6, 1998

Colby,

I can certainly empathize with your wife and what she's going through. I

live in Huntington, WV, and believe I contracted my Lyme somewhere in the state

as my husband and I did a LOT of hiking and camping. Those were the days! I was

happily working three jobs and going to school - it didn't feel like stress,

just an adventure. Then the sore throats came, and kept returning. Dizziness,

exhaustion, disorientation finally took me away from my work and school. I woke

up one day unable to get up off the floor.

Why hadn't someone correctly diagnosed the rash on my back in '93? Finally,

right before Christmas 1995 I found a wonderful Lyme-literate MD right here in

WV who tested me for Lyme, and it came back positive. I was so relieved at last

to know I wasn't just imagining my symptoms! Been on antibiotics -

tetracycline, amoxycillin, and now biaxin - continually since then, except for

a couple of months this spring when I decided I wanted to come off them. After

2 months I was right back to the pathetic heap on the floor who couldn't get up

or even tell you what day of the week it was. Now, back on the meds for 2

months so far, I have the added fun of excruciating back, pelvic and all-over

skeletal pain. My eyes have gone from 20-20 to the point where I can see only a

blur without glasses.

I'm now fighting to get back to some semblance of my former life, even

taking one telecourse through the university. But even that is so taxing on my

limited physical and mental energies that I'm really not sure I can finish it.

But I'll keep on plodding through, and who knows? Wow, what a switch!

Thank God for my doctor and my wonderful husband, who has yet to complain

about the changes in our lives, only showing compassion and belief in my

ability to ultimately overcome this. I am so very lucky to have his support!

I'm almost to the point where I can laugh when I STILL hear people say, even to

my face, Lyme disease isn't in WV!!!

Best of luck to you and your wife. I'll be praying that the new doc in

Mobile helps. Don't ever give up! Attitude is half the battle, as I know you

are so painfully aware. I think I may have finally found an appropriate outlet

for my " If they say it can't be done, I'll show them! " attitude.

Lauretta Gordon

Colby F. Van Atta wrote:

> From: " Colby F. Van Atta " <vanatta@...>

>

> I have subscribed to this list because my wife , the lyme victim, is

> not well enough to spend time at the computer.

>

> 28 years ago, 1970, she was living in St. Albans, West Virginia in a house

> on a cul de sac with the back yard at the foot of a mountain. (plenty of

> ticks)

>

> She doesn't remember a rash, but did come down with a strange sort of

> pneumonia.

>

> Not long after, she suffered the sudden onset of trigeminal neuralgia (tic

> d' la' rue)

>

> That facial pain has now been with her constantly for 28 years.

>

> In 1985 she discovered that a daily Doxy pill seemed to help a little. The

> MD did not know why.

> 1987, The pain grew progressively worse. We made fruitless trips to

> Ochners Clinic, Mayo Clinic (twice), Shands, and s Hopkins and got no

> help.

>

> Then in 1990, a neurologist made a clinical diagnosis of Lymes. He

> prescribed 15 days of Rocephin IV. While on this, she experienced a severe

> Herx. the MD told us that she would never test positive for Lyme because

> of the long term low dose Doxy.

> He also told her to expect to need Further IV antibiotics in the future.

>

> While this did not eliminate the trigeminal neuralgia, it did give her a

> great amount of improvement. In the months following, she became a scuba

> diver, and we were able to do some traveling, Line dancing and other

> activities she had been missing.

>

> Then in 1984 she regressed and received a 30 day Rocephin IV.

>

> In 1985 Developed Chronic Fatigue which has become progressively worse.

> Now she rarely leaves the house, sleeping 16 to 18 housa each day. The

> effort of taking a shower and drying her hair puts her right back in bed.

>

> The MD who proscribed the Rhocephin retired from practice in 1985, and

> since them we have gone nuts trying to find another Lyme literate MD in our

> area, and were on the verge of trying to make an appointment with Dr.

> Burriscano in New York.

>

> Praise God, we have just been referred to a doctor in Mobile, AL who, we

> have been told, is one of the best. has an appointment on 10/15.

> Mobile is only 110 miles from where we live in the Florida Panhandle.

>

> I pray that, in a few weeks, I will be able to publish some good news.

>

> Colby Van Atta

>

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

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

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

> /advert.html for more information.

October 12, 1998

donna,

i to am a new subsciber to the list ....a little about me i was diagnosed with

lyme in 1992....however i has been documented that i have suffered freom the

disease since at least 1990....however no doctors thought of lyme i was tested

for everything but..and even when i was tested most wwere equivocal....i have

been unable to work at all since 1996 the year before that (95) i was out of

work more than in....i am now involved in a workmans comp. suit against my

former employeer(municipality) i ran their leaf composting site on 30 open

acres for 5 years....this is where we believe i was bitten....i applied for

ssd in december of 96 it took until october of 98 to be approved ...plan to be

rejected at least twice ....an attorney who is lyme literate is

helpful....(thank god i found one)....i was approved only after a hearing

before a judge.....my symptoms.....nuero,,,severe arthritis....mental

problems....carpal tunnel.....heart palps and many other fun things

(depression being one of the worst)

this disease helped me on the way to become an alcoholic and prescribtion pain

pill abuser....i have since recieved help and am active in a 12 step

program.....thru this program i have gotten faith in a power greater than

myself. i now take this disease as a gift from god......something i can learn

from....and that one of my callings is to help others who suffer from this

awful disease.....sounds like u have been thru the wringer ....so much pain

and suffering in one family.....i shall keep u in my prayers....as always

please excuse typos and such as this is not easy for me to do.....but i must

.....it keeps me sane......to all.... " hang in there " we can battle this thing

together

reid mcmurray

October 12, 1998

Reid,

Thank you for your note. We have all been through the wringer. A LL atty. I'm

lucky to find a LL Dr. in SC. Guess I should look in the green pages . My

disability company offers to help file SSDI for us per their handy dandy new web

site. Not that I trust them after 9 months of garbage. I put a web site up about

them and within two weeks was approved...interesting. Now, I'll see if they keep

paying without hassling me. Intereting post on Usenet today about Aetna and LTD

and Erisa. Anyone affected by this should read. Also, Doug Dodge sent a letter

to DC about Steere....touche!

Donna

October 13, 1998

Dear Donna,

Your story gives me strength. We both are RNs who cannot work due to neuro

sx and general chronic illness from this disease. We both have our entire family

ill with Lyme. I can only tell you that I understand and am so sorry you have to

endure all of this. I HATE it too but daily, try to hang on. The support of

people who care can make the difference between a day of severe despair into a

day when you know that someone really cares and gives you the strength to go on.

If I can ever help in any way, please contact me through the group or privately

if you need to. I loved and protected my children from harm all thier lives as

I'm sure you have, but I couldn't protect them from a disease that we didn't ask

for, didn't know we contracted and continue to try and fight each day to get

them

well. That makes me very sad even though I know it isn't my fault. Please know

that I care very much. Let us all know how you are doing.

Love,

Helen

tcandkk wrote:

> From: tcandkk <tcandkk@...>

>

> Hello everyone,

>

> Our story in long, but I am too weak to go into all the details. In 1986, we

lived in Burlington County, NJ. We had a new house built. Shortly after we moved

in, I'd hear fleeting sounds coming from the walls. After a few weeks I realized

we had mice, although, at that point, I had never seen them. We called an

exterminator. Since we had young children in the home, 7 and 18 mo. they

suggested using sticky boards. I had no experience with mice, so we agreed. A

fatal mistake! One morning my daughter and I were in my walk-in closet as I was

getting ready for work. She had a favorite stuffed toy she had gotten for

Christmas, a few months prior. A small white Christmas mouse. As she was only 14

months old then, it became Mousie. At 14, she still sleeps with Mousie

Anyway, she told me not to

> step on the other Mousie...as I looked down, I saw it on the board. As I

looked down she reached over to pet it! I quickly washed her hands and got my

husband to get rid of it. We caught a few more, and the exterminating company

came back in to put the mouse poison in our attic area. That way the rest would

die. I wasn't thrilled with that idea, but was assured they would just shrivel

up....we joked about our albino mice as they had white feet. The only true place

I found mouse droppings was in my husband's underwear drawer. Once again we

joked about it, and I cleaned the droppings up. I'm sure they were in my carpet

and I vacuumed them up. In hindsight I now know this was the white footed deer

mouse...major carrier of the deer tick and carrier for Lyme, Babesia and HGE and

Hanta virus.

> Within a few weeks we all developed a wicked case of " flu " all at the same

time. We have never been well since. Between the 4 of us, we have had every

major complication of Lyme. And we just found out about all of this several

weeks ago! I was to the point of feeling afraid to go to sleep at night I was so

ill. I had become too ill to work in Oct. of 1997. I am an RN, and usually

caught upper respiratory infections on a regular basis. Staying home, I was

" healthier " than any other time in my life, thus no antibiotics for over a

year....I now am full neuro, slurred speech, ataxia, dyslexic typing...thank

goodness for spell check...LOL! and all the rest of the symptoms on the list!

Plus narcolepsy, sx of Sjogren's but neg. test results, fibromyalgia, RSD,

unexplained tachycardia, surgery for

> interstitial cystitis that revealed sx. but no true dx, unexplained lactation

since 1987, a case of atypical, viral pneumonia in 1987 scaredly similar to the

description of Hanta...I nearly died. Worked up for MS and MG, deemed needed

biofeedback. Oh yes, a C5-6 fusion after two years of strange symptoms.

>

> My daughter, now 14, has been neuro for 4 years, with migraines, a two month

loss of vision, rages, multiple psych admissions, eating disorder,

> major gastric problems, mitral valve prolapse, unstable BP, a bout with

Giardia (bacteria never isolated even with surgically scoping, but treated with

Flagyl, while on Bactrim also, and responded), severe concentration problems

(diagnosed ADD) to name a few. She had the rash on her neck for 5 years, last

treated in Dec '96. Treated as a fungal infection the whole time. Basically sick

and out of school on homebound for 3 years. Even did a stint in a California

hospital for eating disorders for 6 months. We live in South Carolina, so she

was out there alone, except for out trips out every 6 weeks.

>

> My 19 yr old son gained 40 pounds almost overnight a few months after our

" flu " . Enlarged spleen since 9, female breast tissue even when he lost

weight...weight now back up..., PSVT, a type of tachycardia. His had become so

uncontrolled he was scheduled for surgery Sept 30th. We were diagnosed Sept.

24th. The surgery was canceled. Juvenile rheumatoid arthritis, narcolepsy,

megacolon, several episodes of viral infections that left him unable to walk for

a few months at a time....

>

> Both my kids were straight A students without effort before this. Still

maintain the A's mostly, but struggle.

>

> All 3 of us were always on antibiotics. At least every other month. My

daughter was on daily Bactrim until we stopped it 4 years ago, when all her

symptoms began.

>

> My ex was not so lucky. Hardly ever on antibiotics. He developed severe foot

problems, frequent GI problems, carpal tunnel, but the worst were the mental

problems and depression. After losing his job, somehow he convinced the Air

Force to re-admit him at the age of 42. With in 1 1/2 years of rejoining, he was

boarded out for job incompetence. A total 23 years in the AF with a spotless

history. I did manage to turn it into a medical board as he was on Prozac for

depression, but they made him sit through a 3 day full board for incompetency.

And ruled as such. The switch was several months later. He lost all benefits

except $600.00 month. His behavior got worse, violent and we divorced in March

of 1993. It has been a constant battle with him ever since, until now. The first

thing I did when I

> realized what was going on was to apologize to him!

>

> On September 19th, my 14 yr old attempted suicide. Big time. Overdosed on a

large quantity of antidepressants, Tegetol, and a Nyquil and peroxide cocktail.

She left a long suicide note, basically sick of being sick. This was on Sat

night, but she woke up Sunday! She was sick with an upper respiratory infection

and feverish, but other wise ok until 4pm when things hit. My husband and son

rushed her to the ER. The hospitalization was a nightmare. They could not

pump...too long. So they pulled her IV's in ER and sent her to adolescent psych.

They deemed she could not have taken as much as she did, given her being awake,

heart was ok. We were not allowed to see her per the floor rules until

Wednesday. I had been too sick to even go to the ER with her. I sat on the floor

crying, asking God why

> my whole family was dying, and I hadn't even thought of my ex at that point.

At this point, I was on high doses of Prednisone just to be able to breath,

swallow, chew, sit up. I had just been seen by a new Neurologist who thought it

was Myasthenia Gravis, but I had not had the testing yet. As I prayed, this

sentence popped into my head, " Look at the records again, Lyme " .

>

> I have scads of all of our records. As a looked at mine again from 1990, I was

horrified. It was the first time I was worked up for a multitude of symptoms, by

a neurologist at AFB. I remember being tested for Lyme, but all

the Drs. notes said it was negative. I found the actual report. My Lyme test was

..80 equivocal. If equivocal, they were required to run an IgG and IgM. IgM 1:20

positive and IgG 1:320 strongly suggestive of recent infection. Mind you this is

4 years later and I had been on frequent antibiotics. I was sent for

biofeedback.

>

> I never remember tick bites in any of us. No immediate bulls-eye rashes. Other

than my daughter's rash, my son and I had frequent, more generalized rashes over

the years, my ex nothing I can remember.

>

> I flew to the internet to look up Lyme and was horrified!!! All of our

symptoms in one check list.

>

> The next morning I called the hospital and told them to test her and to get

her back on antibiotics. She was on Zithromax when admitted. They did do a Lyme

titer, but despite a fever still...well 99.4.( We all have low body temps.) did

not put her back on antibiotics. Her drug screens came back in the panic zone of

high and they put the IV back in for a day, but she was basically unmonitored.

And still we could not visit.

>

> I went to my family MD (last 4 years) first thing Monday am with my lab report

and " theory " . Mind you I still did not know all I know now, ie the mice, just

knew we matched the symptom list. He became upset and told me we were not going

to go this route...we had been tested for everything else and all was neg.

Besides, there is no Lyme in SC! 1 official case reported in 1997. I told him I

had lived in NJ, oh, but that was 12 years ago. However he did have the lab draw

a Lyme titer. Of course a week later when I called it was negative. Needless to

say, I have not been back!

>

> I started emailing people on the net, and one angel answered with the name of

a Dr. 10 minutes from me. I called for an appointment (by now it is Tuesday). I

was told he didn't take any more patients, but I could see an associate on Wed.

I took the appointment just to get my foot in the door. This Dr. was not really

Lyme literate. It's a family practice. I had told them I'd done a chronological

history of all of us and that I would fax. They told me to just bring the info,

but I insisted on faxing. Luckily I did! The nurse practitioner saw what I had

written. On my way out the door on Wed. to go to the appointment, the nurse

practitioner called to cancel the appointment. She told me I really needed to

see the Dr. who no longer was taking patients, that he would see me, and she was

> canceling some of his appointments for the next day to get me in. At that

point we called the hospital administrator and told him we wanted our daughter

discharged post haste and with a written order so it wasn't AMA. We picked her

up two hours later. She has now been off all the psych meds for several weeks,

and blossoming...if you can blossom and herx at the same time!!!!

>

> We had pulled our son out of college for a semester for his heart surgery. He

had just gone back down there for a few days, so he was not home for the first

appointment. We did have him seen a few days later. We are on Amoxil 3000

mg/day, Probenocid, acidophilus, B vits and multivits. My daughter herxed first,

probably because of the prior zithromax still being in her system. My son and I

followed in a few days. Our Dr. is considering the IV rocephin. Of course we

were all neg. on and Western Blot. On the first visit my white count was

25,000 and spleen ultra tender. First thought was the Prednisone, but I had

records with me that showed my white count had been slightly elevated 6 weeks

earlier and I had a sinus infection per my MRI done a few weeks prior. Not that

I was symptomatic

> of it, but my Dr. never treated me for it or looked into the elevated white

count. Once off the Prednisone, I developed symptoms of a raging urinary tract

infection. Interestingly enough no true bacteria in my urine on basic glance,

waiting for the culture to come back. My Dr. put me on Bactrim as it has been

the only thing to with all my UTI's. He is a bit conservative, and suggested I

stop the Amoxil...I laughed and told him no....I only THOUGHT I had been

herxing! I have only seen one reference to Bactrim in a report about neuro Lyme

in kids. But it held my daughter at bay for years. I am showing real signs of

fleeting strength...still not enough to be called meaningful, ( I did vacuum

part the house 3 days ago!) but we are all responding. I have a terrible time

with IV's so, I am torn.

> I am going to have my Dr. add the bactrim to the kids. We also were 100%

symptomatic of Candida, and have been dosed with Diflucan several times. We have

eliminated sugar from our diet, and seen remarkable changes. My daughter and I

were having a terrible time with our mouths, cleared in two days with her. As I

have numbness also, I suspect cranial nerve damage. I have full blown

dysarthria, not just slurred speech.

>

> My ex is in NC. He went to the VA with all our info and they drew blood for

Lyme and other things, all negative. They referred him to Infectious Disease,

who I know will not do anything. I am calling the patient rep Tuesday (Monday is

a holiday). I tried calling her last week, but she was out all week for a

funeral. Maybe she will be sympathetic. Otherwise, Drs. in NC (Charlotte) do not

exist, that I can find. We may have to bring him down here. He cannot move

without breaking into a severe sweat, and is quite weak, plus a multitude of

other symptoms from the list still.

>

> My husband now, is an angel to say the least!!! He is caring for all of us.

Neither my son or I can drive right now. My daughter's therapist is starting

home visits this week. Our insurance company has been wonderful, we have our own

case manager now, and they have said " carte blanche " . We have no family in the

area, nor any that can come help. I worry, since this is much like untreated

syphilis, about transmission. Anyone have any studies about this????? He does

have joint pain headaches and fatigue...but figures it is from all he does, and

prior injuries to knees and shoulder.

>

> Between the 4 of us we have seen more Drs. and specialists than you can count.

And no one thought of Lyme.

>

> I just won my battle with my long term disability company after 9 months,

actually based on the RSD, then told them about the Lyme. They called me right

after I saw the Dr. the first time. Actually I put up a web site about the

company, and I was able to track the insurance company monitoring the site and

posted each time they came around....

> and posted the link to the Oregon stalking laws right below it. (The insurance

company was in Oregon.)

>

> Now off to fight SSDI.

>

> I do plan on doing a web site for Lyme, and offer assistance, as much as I can

right now, to anyone else. I know I will never be able to go back to Nursing

without a miracle. Too many neuro problems deeming me unsafe.

> But I will publicly fight this outrage of no diagnosis/misdiagnosis as long as

I can breath once I am a bit stronger.

>

> A good friend of mine and I had always marveled as to how our sons had all the

same problems....her son is now 20. They lived in Connecticut till he was

5...then his problems started. She has been on the phone with Dr. Barrascano's

office, and her family Dr. is going to learn how to treat... had 32 of the

symptoms. And a few others that out of the blue crossed my email path are also

suspicious of Lyme now. All diagnosed with something else and gravely ill. Poor

SC will not know what hit them if we all respond. Our area is known for the

" Okra festival " . Guess we'll have to add an annual " If You Herx, Be Happy Day " !

>

> Last, but not least, I was a School Nurse when I had to resign. But I worked

Hospice for 15 years. And no, it should not be as I have seen described! Please

know that some home health agencies will offer " Hospice " services without being

a true Hospice. Check out their licensing. And if it is a licensed Hospice,

REPORT them. Or call the supervisor for that nurse. I gave my all for patients,

and loved everyone I was privileged to meet. I have enough stories to write a

book. Maybe I will now. Right after I write my book about Lyme...LOL!

> If you ever doubt God's presence or angels, let me tell you about my stories

of pediatric Hospice patients especially. Too young to know why they said or did

some things. I know even my agency had problems at times, but we always made it

right. and it was the 2nd largest in the country. A true Hospice. But what I

read was inexcusable.

>

> I promise I won't write this much again....it just started coming out.

>

> Donna Huddleston

>

> Donna's World

> http://www.geocities.com/Heartland/Plains/9158/index.html

>

> Ring of Romance Home Page

> http://www.geocities.com/Heartland/Meadows/9158/Romance/ringromance.html

>

> Can love be found on the internet?

> We did!

>

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

>

October 13, 1998

Hi Marta: I just signed on with lyme-aid. I have been a victum of lyme

disease for more than twenty years. Only finally diagnosed in 1991, and I

have been on continuous antiobiodics since then, My story is a long, long one

of horrible suffering, physical, as well as mental as your family members look

at you as being lazy because noone can tell you whats wrong with you. I was

told to see psychiatrics,

I went for bio-feedback, myotherapy, lumbar percateanous discectomie, heart

irregularities, I was on a tens machine all the time. I was in such terrible

muscle spasm (by the way, my dr. says she sees more acute muscle spasms with

patients from PA, then from NJ), that I was unable to walk and it was even

difficult to breath because my rib cage was in such acute spasm., couldn't sit

or walk or dress myself. Have three children, one has been hit with lyme as

well, and reuined his life practically because if critically effected his HS

career. My Mom is also sufferingf with it, I knew she had it for years ..but

everyone said I was parinoid She got very sick this past spring, and while

in the hospital I had the dr pull a lyme urine antigen. Sure enough...she was

off the charts!! She had to give up her apartment and move in with me. I am

now on injections of bicillin IM weekly. This has been the best for me

although it made me very sick for the first couple of years, had to cut way

back on dosage and increase gradually. I have a wonderful physician in New

Jersey. I travell 2 hours each way..but its worth it. Would be glad to share

information or encouragement with anyone who wants to write.

Gail

IAMAVIPTWO@....

October 13, 1998

Hi....I read your note to marta, and I'm on bicillin 1.2 milliion once a week,

andits been the only thing to start to make me better after being on orals,

and intravenous for years. Let me know if it works for you?

Good luck

Gail

October 14, 1998

Hi Donna,

I had to wait a few days to respond to your story (October 11th), when I

read all that you have been through since you lived in NJ, I was so

horrified, and yet touched that you have been able to find some angels that

are helping you. I just was not sure what I could say after reading your

story, you are so courageous, with all the adversity that you, your husband

and children have been through.

I am so happy that the Lyme doc who was no longer taking patients came to

your rescue, and please keep us posted on your family's progress. I did not

get a chance to check your web pages yet...but please by all means when you

are up to it, we need all the Lyme web sites we can get.

I am glad you finally got approved for Long term disability. I had a fight

on my hands too. But fortunately was approved. Now I am waiting for SSDI,

I have been denied twice, now I have an attorney and waiting for my appeal

to be heard by an ALJ (Judge).

{{{{{{{Supportive hugs to you and your family}}}}}}}

Marta

-

November 4, 1998

In a message dated 10/29/98 8:48:16 AM CST, ZelanteIG@... writes:

<< My name is and I have had Lyme disease for 2-4 years, though it

was just currently discovered. I have undergone numerous types of tests,

that

I'm sure many of you are familiar with. My IV treatment is just coming to an

end, and I haven't improved at all. Unfortunately I'm missing out on my

senior year of high school, but I am hopefull that I will make it to college

next year. I'm very glad that I found this list, it helps to be able to talk

to people going through the same thing. >>

Glad you found the list. You'll gain a lot of information here and a lot of

support.

March 6, 2000

Dear Kim: It's all worth it! What you are undergoing is a real test indeed, but

should

carry you into more pleasant experiences on the other side of the suffering.

Life usually

gets alot better with the sheer will it sometimes takes to ride these things

out. Best of

luck to you in hanging on!

PS My sister had to get off St 's Wort-made her feel " weird & spacy " ...just

a thought.

Kim wrote:

> From: " Kim " <kim@...>

>

> Hi all:

>

> I've just joined this mailing list and thought I'd introduce myself. My name

> is Kim, 36yrs old and I live in the UK. I suffered with anorexia and bulimia

> from the age of 9yrs until around 6 yrs ago (that's if you ever really leave

> the psychological problems behind!!). Anyway, I first suspected that I

> suffered with Candida Overgrowth 10 yrs ago and had great success following

> an anti-Candida diet, and taking a variety of dietary supplements. It is

> very difficult to get any General Practitioners (GP's) over here to even

> consider the possible diagnosis of Candida Overgrowth ... so treatments such

> as nystatin and diclufan are beyond the budget of someone like me that

> cannot afford private medical care (remember we have a National Health

> System (NHS) here). Any way, 6 yrs ago my life situation changed

> dramatically (in all ways, financial, emotional etc) and I was no longer in

> a position to afford the anti-Candida diet and supplements. I have undergone

> large amounts of surgery with covering antibiotic therapy ... which I

> generally refuse with avengance ... but not much you can do when you're

> under anaesthetic!! ... Anyway, 4 yrs ago, my symptoms returned but in a

> much more severe form than I have experienced previously ... and 3 yrs ago I

> was diagnosed with Chronic Fatigue Syndrome (CFS) ... which I have resented

> being labelled with, and still do not accept ... they've labelled me for the

> sake of not wanting to accept the possibility of Candida Overgrowth.

> Throughout this time I have continued to hold down a full time job as a

> Nurse, keep my family together etc ... Unfortunately this year I had to

> undergo surgery once again (without antibiotics this time), and then a

> couple of months ago I very reluctantly agreed to take a course of

> antibiotics (despite my better judgement) as I ended up with a rectal bleed

> secondary to an extreme exacerbation of my IBS ... boy do I wish I hadn't

> done that ... I am now at an all time low :0( I feel depressed, have

> constant headaches, muscle and bone aches, headaches, athletes foot,

> vaginitis, my weight has soared to an all time high etc, etc.

>

> I've decided enough is enough and money is nothing compared to my health ...

> so back on the anti-Candida diet and have bought myself Acidophilis,

> Caprylic Acid, Biotin, Multi-Vits, Vit C, Evening Primrose Oil, Omega 3

> oils, Garlic oil ... and I've also started on St 's Wort for the

> depression ... taking plenty of olive oil and I'm just getting to the end of

> a hard 9 days detox ... feeling 'is it all worth it?' despite knowing that

> it is ... and then my partner happened across this list ... so ... sorry for

> such a long intro ... :0)

>

> Kim (UK)

>

http://www.puzzlechest.com/

March 8, 2000

Hi Kim!

Hope this works out and you get to feeling better.

hugs,

> From: " Kim " <kim@...>

>

> Hi all:

>

> I've decided enough is enough and money is nothing compared to my health

....

> so back on the anti-Candida diet and have bought myself Acidophilis,

> Caprylic Acid, Biotin, Multi-Vits, Vit C, Evening Primrose Oil, Omega 3

> oils, Garlic oil ... and I've also started on St 's Wort for the

> depression ... taking plenty of olive oil and I'm just getting to the end

of

> a hard 9 days detox ... feeling 'is it all worth it?' despite knowing that

> it is ... and then my partner happened across this list ... so ... sorry

for

> such a long intro ... :0)

>

> Kim (UK)

October 31, 2000

welcome to the group. i read your story, and like porobably many others on

this board, recreate a very similiar nightmare. i for one think you

positively have lyme, no doubt about it. stick with this group for lots of

info and support. pj

October 31, 2000

Shrews, ( Sorry but you didnt sign with a name )

Your story is so very typical, alot of it sounds like my own. My Cardio

dxed my problem as 2nd degree heart block, but it only took 6 cardio's for

one to take me serious and then almost 30,000 in testing to find the prob. I

was on the verge of a pacemaker, but these symptoms have drasticly reduced

since being on abx (Zith and ceftin ) Stick with your LLMD, they'll get you

better, might take a bit of time since your now chronic, but there is light

at the end of the tunnel. This is also, a great group, post anytime! Take

care, Pepi

October 31, 2000

> welcome to the group. i read your story, and like porobably many

others on

> this board, recreate a very similiar nightmare. i for one think you

> positively have lyme, no doubt about it. stick with this group for

lots of

> info and support. pj

Thank-you so much PJ. I am sorry that my story was soooo long but

I'm pleased that you read it. You don't know how happy I am that you

think that this could be Lyme because I have feared so many other

things. Sometimes especially when you feel so sick you begin to

think that no way this could be Lyme disease. I am so happy to be

part of this support. I need all the support I can get cause I

certainly can't be calling my Dr. everyday for reassuance or he'll

have me committed. Thanks again. I have to take my seeping pill so

that I can sleep for a few hours. Can you believe that even a

sleeping pill only allows me to fall asleep 4 hours max? I remember

falling asleep at 8:00 and sleeping straight through the night with

no problems. Those were the days!! Again, thank-you for your words.

October 31, 2000

> Shrews, ( Sorry but you didnt sign with a name )

> Your story is so very typical, alot of it sounds like my own.

My Cardio

> dxed my problem as 2nd degree heart block, but it only took 6

cardio's for

> one to take me serious and then almost 30,000 in testing to find

the prob. I

> was on the verge of a pacemaker, but these symptoms have drasticly

reduced

> since being on abx (Zith and ceftin ) Stick with your LLMD, they'll

get you

> better, might take a bit of time since your now chronic, but there

is light

> at the end of the tunnel. This is also, a great group, post

anytime! Take

> care, Pepi

Thank-you Pepi. i apologize for forgetting to write my name down.

My name is and I live in land. I think that I forgot to

also mention that during this whole ordeal they found out that I had

a heart murmmer and had to go get it checked out. It turns out I

have Mitro Valve Prolapse which I never had prior to this. Go

Figure!!!

October 31, 2000

Dear ,

I am also fairly new to this group, my husband was just diagnosed

with lyme 2 weeks ago (he had a positive luat, but negative pcr &

western blot). Your story sounds so incredibly like him, it's

amazing. And he didn't even have the tick or a rash ever (but did

have a characteristic extended flu-like illness back in college, so

we think this has been 14-15 years now). Like you he has had tremors

& twitches, a lot of hair loss, alternating anxiety and depression

(and a neurologist who sent him on his way after a clear MRI & EEG &

said he needed psychotherapy, and that there was no way he had lyme,

she obviously hasn't read the most common symptoms!), also had

problems with antidepressants, breathing problems with no sign of

asthma etc..., fatigue, insomnia, fainting, dizziness, fevers &

chills, sleep apnea, throat closing up, headaches, incredibly

sensitive to smell (and light and sound too), diarhea, memory

problems--yup, your story, though the details are different, outline

almost every single major symptom my husband has, I'd agree with the

others who posted & your dr, sounds like Lyme to me! Hang in there,

God bless, Merry :-)

> Hello to everyone.

> I am new here and would like for you all to take the time and

read

> my story. I will try and make it brief but would like your

opinion.

> I would like to start off by saying that I have been clinically

> diagnosed with Lyme disease.

> It all started with a strange rash in the fall of 97. Wasn't the

> typical bullseye rash either. Looked like what I would imagine

> ringworn to look like. Went to the Dr. cause it wouldn't go away

and

> was spreading a bit across my chest. My Dr. at the time tested me

> for syphilis (boy did I get freaked) Came back negative. The rash

> eventually went away.

> Now that brings me to the spring of the following year 98. I was

> doing some stomach crunches and noticed a black dot on my stomach

> area. Come to find out it was a very tiny tick that I thought was a

> mole. I pulled it out and went about my business. Unfortunately

> can't remember what month this happened but know it was warm

> outside. That September, I began to feel my legs seemed like

> rubber. They felt wobbly and strange. Then my left arm began

> tingling like it was going to fall asleep. I also began to feel

weak

> and sick to my stomach. Thought I was having a stroke. My heart

> rate was pretty high and ended up practically fainting. Went to

ER.

> They said the only thing they could find was that I was

dehydrated.

> They pumped me up with fluids and sent me on my way. The rest of

> that week I continued to feel ill and also began to have intense

> anxiety. By November I noticed that my long hair began to fall and

> break off near the roots. It got so bad that I had to cut it off

> almost to my shoulders. My hair had gotten significantly thinner

and

> I thought that I was going to go bald. In the winter months other

> strange things began to happen: My fingernails would get numb and

I

> battled with intense depression and anxiety that several types of

> antidepressants would not take care of. I also began to battle with

a

> fatigue that I had never had before. It was a fatigue that would

> drive me to bed. I had no stamina left in my body at times and

> thought it was just real bad PMS. Then by March/April my legs

began

> to feel strange again. This time my thigh muscles felt like I had

> just lifted 500 pound weights. My thumbs began to twitch

> uncontrollably and I would get these real weird waves on anxiety

that

> would literally leave me next to faint. I went to the ER again in

> May because I began to feel very ill. Intense fatigue took hold of

> my entire body and my muscles were twitching all over. I began to

> run a fever for 2 days of close to 100' and then the top of my foot

> went numb. I began to shake without stopping for days on end and

> literally had to be carried to go to the bathroom because I was so

> weak. I remember crying out that I thought that something was

> invading my nervous system but everyone just thought I was COO-

KOO!

> This illness lasted about 2 weeks from the time it started. I also

> did not mention that during these episodes I had insomnia. By the

> end of June I began to have trouble breathing. Had 2 chest x-rays

> that came back clean and a pulminary function test done, also came

> back fine. I remember feeling a heaviness to my lungs and I had a

> dry cough. Sometimes I felt like I didn't have enough air in my

> lungs to even finish a sentence. After that I began to experience

> something like sleep apnea. As each month passed i would have a few

> days out of that month that I would run a low grade fever. In the

> fall I began to feel very shaky and a lot of muscle pain. My face

> would get slightly numb and my eye lid would droop affecting my

> vision. I twitched constantly and then began to have tremors of

the

> head and hands. I would also get a feeling of total debilitating

> fatigue that would cause me to appear like a limp rag. A friend of

> mine began asking me if I had ever been bitten by a tick and that's

> when the whole Lyme thing started for me. I was put on Doxy for 5

> weeks and during the 2nd to 3rd week my symptoms intensified and i

> could hardly hold my own head up because my neck muscles were so

> weak. My throat felt constricted and I basically thought I was

dying

> of some horrible neurological disease. I found an Infectious

Disease

> Dr who put me on IV Rocephin for 6 weeks and that was the first

time

> I began to slowly feel normal once again. I had already gone to 1

> neurologist who basically told me I was a lunatic and my DR. sent

me

> to have an MRI done which came back normal. The neurologist who

> thought I was crazy also gave me an EMG and that was also fine. He

> basically sent me on my way. I then was sent to a neurologist from

> Hopkins by the INfectious Disease Dr. As I was done with my

IV

> he checked me out looked at my MRI and said " YOU ABSOLUTELY DON'T

> HAVE MS OR PARKINSONS " as this was a huge fear of mine. Finally

> found a LLMD in March of last year and he clinically diagnosed Lyme

> disease. When I had gotten my first Lyme test done the results

> read " Probably Negative " The other 2 times that I had western

blots

> done were while I was on IV and they apparently came back

negative.

> My LLMD put me on oral antibiotics (Ceftin) and I was doing fair on

> them. In May and June I felt almost normal only to begin to feel

ill

> again in August. In September my LLMD added Questran to my Ceftin

> and 2 weeks into that I have once again gotten deathly sick with

all

> neurological symptoms. My muscle and nerve function would

basically

> do their own thing leaving me feeling that I had no more control

over

> my own body. Tremors, numbness, tingling, off

balance,weak/fatigued,

> hearing problems,insomnia,nausea, head aches,ice cold hands and

> feet,smell sensitivity, and diharea (spelling?), memory problems.

>

> Well, that's it in a nutshell (HARDLY) but there just isn't a

> shorter version of this story. Please let me know if this even

> sounds like Lyme to you. believe it or not I still doubt my

> diagnosis and live in fear when I get this sick. I surely would

like

> to hear what anyone has to say. Thank-you so much for your time.

October 31, 2000

Pepi,

When they told me it was Mitro Valve Prolapse they said it was no big deal

and nothing to worry about. They told me that was why it felt sometimes like

my heart would race. They told me that many, many others have this and that

it was not serious. I do get the racing heart palpitations from time to time

but now that I know what it is I don't freak out and it goes away. Lately

the worse thing I have been dealing with that doesn't want to leave me is

this horriffic anxiety that lasts for hours. I try to do the deep breathing

but it only works at the moment I'm doing it and my next normal breath it's

all back. I have been living on anxiey medication for the last week and feel

like some sort of junkie. I hate this and just want it to all stop! I'm at

witts end here. Been house bound for 3 weeks and this computer has been my

life saver and comforter. Spend umpteen hours a day reading and learning of

others that are living the same hell to assure me that I'm not alone. When

will it all end or better yet will it end? I'm scared!

lisa

October 31, 2000

they found out that I had

> a heart murmmer and had to go get it checked out. It turns out I

> have Mitro Valve Prolapse which I never had prior to this. Go

> Figure!!!

I never had any heart probs untill lyme, the bugs love muscle and nerves so

they really love the heart! Do you have constant MVP or just an irregular

one? Mine clicks just occasionally, and am going to hvae another echo next

week, have one every 4 or so months. Luckily I have no 'vegetation' on the

valve, phew. Take care, and FYI just in case you dont know, dont let

them give you steroids, they can cause a bad arrythmia in lymies. Pepi

November 1, 2000

In a message dated 10/31/2000 11:21:24 PM Eastern Standard Time, shrews36@... writes:

.. I found an Infectious Disease Dr who put me on IV Rocephin for 6 weeks and that was the first time I began to slowly feel normal once again

Dear /Shrews,

Welcome here, and YES, you almost definitely do have Lyme.

Your story is so much like my own.

And, I, too, improved so much on Rocephin.

Be careful, however, to take Milk Thistle to protect your liver, and I'm not sure what is best, but someone here can tell you, ... you need to take something to protect your gallbladder also, unless you've already had it removed.

Your LLMD, most likely, will be taking blood samples every week or two while you are on IV Rocephin, and will test for liver enzymes. You will see that the milk thistle will get them right down to normal; otherwise, they will go way up.

You will, like most of us, need prolonged treatment.

We all hope & pray for a cure someday.

Hugs,

a Aida from NJ

November 1, 2000

Hi !

Welcome to the group......you are in the right place. Your story

does sound like Lyme and hopefully, you are on your way to feeling

better now that you are seeing a LLMD. Please - I feel the same way

about calling my doctor all the time - they must cringe when they

hear me on the phone. I feel like a major PIA but remember one thing

- doctors are there to help you!!!!!! I remind myself that all the

time, especially when I'm feeling really sick.

Anyway - this group is a wonderful place for support &

advice.....just reading the posts has helped me A LOT. So stay tuned

and welcome!

November 1, 2000

> When they told me it was Mitro Valve Prolapse they said it was no big

deal

> and nothing to worry about.

FYI, MVP can be very very bad! Keep an eye on this and have it checked

every year at least. A mild MVP can sometimes right itself after abx

antibiotics ) but if not it will eventually deteriorate. During MVP when

the valve falls back it *can* eventually gather 'stale' blood, this blood

may build up and then fall off, if this does it is a clot and that can cause

its own problems. I cant remember where the MV goes to , either lungs or

brain, but throwing a clot into either can be bad, the brain being much

worse. Are you on any heart meds? Beta blockers, thinners etc? And does

your LLMD know of this problem? IF you havent found it already

www.lymenet.org has a great collection of medical abstracts, search it for

MVP.

I can comisserate on being housebound, I am like that alot!

More than I would like to be. Dont be scared, you are with a good Dr now,

your road will be tough and maybe long, but your on the right one now! Keep

a daily log on how you feel, any special symptoms etc, this is both good

diagnosticly and great if you ever need to file for dissability. Take care,

and quit worrying!!! *-) Pepi

November 1, 2000

hi all old subscriber coming back.....hopefully it has changed and hopefully so have i.

November 1, 2000

It's LYME, LYME, LYME!

Your story sounds identical to mine in many respects. You also need to

be tested for Ehrlichiosis and Babesiosis.

I hope you have a Lyme-Literate MD (LLMD). You need treatment.

Good Luck,

Joan LI NY

November 1, 2000

I'm no Doc...............but it sounds like lyme to me.......find a LLMD

quickly.........Connie nwnj

Leave no stone unturned.......

November 1, 2000

In a message dated 10/31/00 9:32:23 PM Pacific Standard Time,

shrews36@... writes:

<<