Re: would love your input

[Guest guest]

Amy,

I'm sorry you're so very ill.

I would say, if you can make it to Dr. '

office in person, I'd go! It's so hard to get in

to see him these days (from what I hear) that I

wouldn't pass up the opportunity. A good doctor

will be able to help you more after he's seen you

with his own eyes, I think.

I think you need it psychologically, too, so that

you don't feel so alone.

I have never been as sick as you are now, but I

was pretty lousy a few months ago. I found a

treatment that worked for me a few months ago and

it's made a big difference. Now I look back on how

lousy I felt and how much pain I was in, and I can

hardly believe how far I've come.

I hope you'll be saying the same thing in just a

short while. Meanwhile, I'm keeping all good

thoughts for you.

Let me know if you need anything while you're in

the NYC area -- I live about 20 minutes from NYC

over on the Jersey side. If you want to email me

privately I'll give you my phone number.

take care

Jean

[Guest guest]

Dear Amy: Go to see Dr. - otherwise, you'll always be

wondering if the advice would be any different if he saw you in person.

Further, he might actually be able to put you at ease by letting you

know that your symptoms are not unusual and are to be expected.

Remember, herxes can last for weeks, (and sometimes months!) at a time,

so HANG IN THERE!!! I did the SPECT scan a couple of weeks ago at

Columbia Presbyterian in NYC. It wasn't too bad. They inject some dye

in you and then you lie on a table for 1/2 hour while triangular camera

blocks move around your head. I'm quite claustrophobic, but this didn't

seem to bother me too much.

As for the loss of control over your life, you have lost control to

some extent - the disease does that to all of us. But you still have

control over major portions of your life - you have control over who to

love [including pets], who to be with on a daily basis, what makes you

happy, what cards to send lucky friends over the Internet <g>, how to

behave towards people you come in contact with in your world - this

disease can debilitate us, it can cloud our brains and cause us intense

pain and fear - but it can never take the essence of who we are!

Continue to fight for who you are, the essential core of your being as a

decent, loving, caring creation of God, made in the image of God, and

the disease can never prevail over us.

Love,

Lovette

[Guest guest]

Hi Just curious what treatment is working f[t

[Guest guest]

Amy,

I think you should go see him, if you can find a driver. It may make a

difference to you to see him in person. I think they understand us better if

they can see us and hear the anguish in our voice.

Best of luck and hold on sounds like you are in a really rough period right

now. Prayers are with you.

Huggs Huggs, Huggs,

Connie

[Guest guest]

600 mg/day of doxy. But I just had a really

stressful week at work and some of my neuro stuff

(twitchy muscles and numb left side of the face)

have come back. I also still have inappropriately

weak muscles (like brushing my daughter's hair

totally tires my arms in just a few seconds).

But my joint pain/shooting pains/are almst 100%

gone, and that was the most debilitating thing for

me. But I'm far from 100%....

[Guest guest]

Lovette thanks for your support. I know that you are very right about alot of

things you mentioned in the letter. Hugs to you, and I am going to go see Dr

so I''ll let you know how it goes, I see him Monday.

Hugs

Amy

[Guest guest]

Thankyou to everyone who responded. I have read everyones mail and I am

planning on going, am herxing really bad as you all know and will probally not

be on much untio next week. Thanks for caring and sharing.

Hugs

Amy

[Guest guest]

Hi I am glad to here you are feeling better. I was on 600mg of Doxy once

and it was hell. My whole body would hurt so bad and my nuero stuff was awful.

Maby it was a herx I don't know anymore. DId you have any worsening symptoms

at first on the Doxy? Continue to get well -Val

[Guest guest]

Jean: Did you ever consider changing to different antibiotics at lower

dosages rather than raising the doses of what you were taking to such high

levels? Maybe what you are taking is not the antibiotic of choice for the

problems you are having ? My doctor kept trying different antibiotics and

combinations until she found one that worked for me rather than just upping

the dosages of what didn't seem to be working. Biaxin and plaquenil finally

worked for me........but not until I had tried all the rest. Just a

thought......I hope you find what works for you. Mona

[Guest guest]

ValP74@... wrote:

> From: ValP74@...

>

> Hi I am glad to here you are feeling better. I was on 600mg of Doxy once

> and it was hell. My whole body would hurt so bad and my nuero stuff was awful.

> Maby it was a herx I don't know anymore. DId you have any worsening symptoms

> at first on the Doxy? Continue to get well -Val

>

Hi Val --I kind of " snuck up " on the 600 mg dosage, so I never had that huge

herx

that most people get when they start meds. My doctor started me out at 200 mg,

which did nothing, and I continued to decline for a month. He upped me to 300 mg

at my request, but I was scared at how ill I'd become and I switched to a Lyme

doc

in NY State. He immediately took me off the doxy and put me on 3000 mg of

amoxicillin. I had about 2 good weeks and then I started to deteriorate. (He

didn't prescribe probenecid to go with the amoxy so I'm sure I was actually

absorbing very little). I went downhill for a month, then I asked for a

different

drug. He put me on 250mg of zithromax, which is also a very low dosage. I

continued to decline. He very grudgingly put me on 500 mg of zithro, but by then

I

was so fed up with him that I went back to my doc with Dr. Burrascano's protocol

in hand and asked him if he'd treat me according to Dr. B's guidelines (he knows

very little about Lyme). He agreed and put me back on 300 mg of doxy, because we

both thought that my two good weeks back in the Fall had been due to the tail

end

of the doxy (before I switched doctors!)

I upped myself to 400 mg, then 500, then 600 over the course of a few weeks. My

doctor was appalled and scared, but after he did some blood work and saw my

liver

was okay and that I was actually *better* and almost pain free, he was okay with

the new dosage. I've been on 600 for about 6 weeks so far.

I think I've monthly herxes since going back on the doxy in January, but the

first

one was really little. After I upped myself to 400 mg, I had a day when I felt

like I'd sprained every muscle in my body -- terrible sciatica, cramping legs,

stiff neck, etc. I had a similar bout exactly 4 weeks later, that lasted longer

but was less intense. I know what you mean about your whole body hurting! I

don't

remember any increase in my neuro symptoms.

I drank *gallons* of water and took *lots* of Vitamin C -- about 30 grams (30

1000-mg capsules) over the course of the day, a few grams at a time. I have no

idea if it helped but I thought I should try to flush out my system. Even with

that huge dose of C, I never got diarrhea like I have before with such a lot of

C,

so maybe my body really was using it.

It wasn't my intention to minimize herxes (in fact I was kind of upset that I'd

never had one, since I figured that meant the abx weren't working!) but I guess

I

stumbled on a method!

What are you on now in the way of meds, and are they working for you?

Jean

[Guest guest]

WISHXXX@... wrote:

> From: WISHXXX@...

>

> Jean: Did you ever consider changing to different antibiotics at lower

> dosages rather than raising the doses of what you were taking to such high

> levels? Maybe what you are taking is not the antibiotic of choice for the

> problems you are having ? My doctor kept trying different antibiotics and

> combinations until she found one that worked for me rather than just upping

> the dosages of what didn't seem to be working. Biaxin and plaquenil finally

> worked for me........but not until I had tried all the rest. Just a

> thought......I hope you find what works for you. Mona

>

Hi Mona --

Well, 600 mg was within the acceptable range for the doxy, and so far it was the

only thing that had helped my joint and muscle pain. I don't know if you saw my

post to Val, but I had been on (low) doses of amoxy and zithro and neither

helped *at all*. I felt like the doxy had helped at 300 and so I crept up on a

higher dose to see if the improvement would be more... and it worked.

For me, the joint pain was the most debilitating, since I'm desperate to stay

employed and I was losing the ability to walk, type, write longhand (most of my

job involves taking minutes at technical meetings), brush my daughter's hair,

pick her up (she's six) etc. The doxy has reduced the inflammation wonderfully

for me. Aside from the fatigue and fog, which have gotten worse in the last two

weeks, I feel better than I have since last September. I think the

fatigue/fog/sticky brain may be candidiasis.

My doctor absolutely refuses to prescribe Plaquenil because of the side-effects.

He's really conservative that way. We're also trying to avoid the " expensive "

abx so as to keep USHealthcare off our backs, since I've never tested positive

and he's scared they'll start giving us a hard time (pathetic, eh?).

He's intrigued by what I've been reading about Flagyl on the

sci.med.diseases.lyme newsgroup, and we may try that for my neuro stuff, since

it's starting to impact my work ability. Funny how sleeping 14 hours a day cuts

into your productivity!

Jean

[Guest guest]

In a message dated 3/20/99 2:37:17 PM, jscully@... writes:

<<It wasn't my intention to minimize herxes (in fact I was kind of upset that

I'd

never had one, since I figured that meant the abx weren't working!) but I

guess I

stumbled on a method!

What are you on now in the way of meds, and are they working for you?

Jean

>>

Hi thank you for the info. I am now on Bicillin shots and Biaxin and

Plaquinel. I am about 60% better but always have problems every day. I don't

even know what to do next. I was thinking of the flagyl or trying IV again

but I am just so confused. I have always responded dramatically to all of the

Lyme used antibiotics, but it has been over 6 months and I amm still not

myself. I am afraid of nothing working anymore because it has been so long. My

doctor is great and will give me anything I want , but the prblem is finding

somehting that will work. I keep staying at this level on my cureent thrapy

and don't want to get any worse. Any suggestions? when I was on the 600mg Doxy

I ws worse for oer a month. i don't know if it was a herx or just me not

responding. That is what makes me so confused. Are you back at work. I am

still working but have days where I barely make it through. Anyway I hopr and

prya that you continue to feel better. I am anxiously awaiting the Lyme

conference in April to here any new info. Please write when ou get a chance-

Val.

[Guest guest]

Hi Amyl....I sure hope you are doing better soon. I too get meningitis

symptoms when I herx...and am so sick I can't get up to get to the hosspital

ER> The only thing that relieves the awful pain and pressure for me is

percaset. I can go weeks without taking any, but when that meningitis hits,

its the only thing that keeps me from doing myself in. Have you tried itt?

In my prayers,

Gail

[Guest guest]

I am saddened to read your posting and learn about your problems with

doctors that we have all had Where do you live, anywhere near PA....I just

found a great doctor here who does lyme and babeiousis (spelling?) We just

learned that I have had it for years (been on abx for 9 yrs) and my son has

it as well as lyme AGAIN.

\I think I must take my other son in to be tested and my Mom too. Are you

doing better yet, and what are you on now?

I was on bicillin shots for the past few years, but this new dr put me on

doxy (1000) and ceftin(1000) and mepron ...ever heard of this combination?

Hope you are better,

Gail

[Guest guest]

I don't know if you were the wrong but this new doctor doesn't

accept insurance. AT ALL. You have to submit your own papework etc. if you

are to get reimbursed. Also with the labs, he asks you to pay them o rmake

arrangements.He uses only Igenex I believe. Curiously, I heard he speak at a

lyme support meeting in Doylestown. He had slides and all, he even has

treated Amish, who NEVER go to the doctor. Many of them suffer with it as it

makes sense. I was going to a doctor in your area, who I may still see, my

Mom sees her. I would be happy to give you the information if you still

desire it. What is Flagyl?

Wishes for wellness,

Gail

[Guest guest]

IAMAVIPTWO@... wrote:

> From: IAMAVIPTWO@...

>

> I am saddened to read your posting and learn about your problems with

> doctors that we have all had Where do you live, anywhere near PA....I just

> found a great doctor here who does lyme and babeiousis (spelling?) We just

> learned that I have had it for years (been on abx for 9 yrs) and my son has

> it as well as lyme AGAIN.

> \I think I must take my other son in to be tested and my Mom too. Are you

> doing better yet, and what are you on now?

>

> I was on bicillin shots for the past few years, but this new dr put me on

> doxy (1000) and ceftin(1000) and mepron ...ever heard of this combination?

> Hope you are better,

> Gail

Gail,

I'm not sure if you were addressing me because you didn't quote the posting you

were replying to. I think there's another who posts to this list.

In case you were referring to me....

I've never heard of a combo of 1000 mg of doxy and anything else -- the highest

dose I've ever heard of was 600 mg. (No wonder you're herxing!) 600 mg worked

well for me until a few weeks ago when it suddenly stopped working. Now I'm

trying Flagyl -- 2250 mg/day. I'm waiting for a consult with a Lyme doc in a

couple of weeks and my doctor agreed to try the Flagyl in the meantime. So far

I'm herxing mentally but not physically, if that makes sense -- I was bitchy and

irritable for a couple of days and now I feel like I'm stoned. I've had some

mild

aches and pains but nothing I'd say was herxy.

Your doc sounds really aggressive! That's great! I am 20 minutes from the

Lincoln

Tunnel in NE New Jersey, but I would travel to PA on my hands and knees if it

would mean getting better. Why don't you email me privately and let me know his

name? Is he by any chance accepting Aetna/USHealthcare? This Lyme doc I'm going

to consult with doesn't accept it and she's going to cost me a bloody

fortune....

Thanks!

Jean

[Guest guest]

How many of you (lyme patients) would give up your disability to try to work

again if you still were positive for lyme disease and babaeoious? I have to

make that decision. I am also a widow, and have three kids, one in college,

twin boys graduating from HS this year, and my mother is with me sick with

lyme, my one son has lyme and babeasia, and is very ill.

I feel I need to try to support us, but my symptoms come and go...you all

know the routene. Your imput is greatly appreciated.

(by the way, I can only work for a few months and then I become ineligible

for the disability anymore)

[Guest guest]

Hello " L " thanks for your imput. I'm sorry about your job. I have been

unable to work since 1990. Took me 5 years (-plus a disability attorney) to

get me finaly approved for my disability. I'm so worried about my son

also...if I'm not here, don't know if he is well enough to figure out his

meds or to even take them b/c he gets so ill and can't get out of bed.

If you need one, I know an attorney that just does disability, he is in PA

however. Let me know.; by the way, how old are your children?

Wishing you wellness, Gail

[Guest guest]

--- IAMAVIPTWO@... wrote:

> From: IAMAVIPTWO@...

>

> How many of you (lyme patients) would give up your

> disability to try to work

> again if you still were positive for lyme disease

> and babaeoious? I have to

> make that decision. I am also a widow, and have

> three kids, one in college,

> twin boys graduating from HS this year, and my

> mother is with me sick with

> lyme, my one son has lyme and babeasia, and is very

> ill.

> I feel I need to try to support us, but my symptoms

> come and go...you all

> know the routene. Your imput is greatly

> appreciated.

> (by the way, I can only work for a few months and

> then I become ineligible

> for the disability anymore)

>

>

------------------------------------------------------------------------

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> ONElist: The leading provider of free e-mail list

> services!

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> /archives.cgi/

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>

I am also faced with the same decision. I am newly diagnosed. Get to

start my IV treatment tomorrow I hope. I have been off work since Aug.

of 98. Because I could not get a doctor to give me a diagnosis (saw 5

before I found my current one) other than cfs i have been waiting 5 mo

for my disability and have been denied by ssi. I have already lost my

position at work. Can take an open position if one is available if I go

back before this coming Aug. If not i lose 8 yrs senority and all of my

benefits. My ins is already gone. My plan is to just focus on getting

well and being able to return to the life i had prior to this disease.

I had to realize my health comes first and the rest will just have to

work itself out. I also have 3 children and do not want to jeaprodize

my life for a job that wont recognize that this is a serious illness.

Not to mention the drs that blew me off. I could have been cured and

back to work by now had they done thier job. I know money is important

and a necessary part of life but you only get one chance to live. Hope

this helps. Please write back if you need to talk or just vent.

L

_________________________________________________________

[Guest guest]

Be very careful about giving up a sure thing for an unsure thing. If you

go back to work and lose your disability can you get it again? Is there

a long waiting period? You need to be very sure you aren't kidding

yourself about being able to sustain a fulltime job and all your problems

at home and then, oh yes, don't forget you're still sick, too. I kid

myself once in awhile and think I should be able to handle my job again

and then I look around me and realize I'm not handling a fulltime life

without a job. I still can't walk to amount to anything but I can get a

good long night's sleep and wake up convinced that I'm a whole lot

better. I do a load of laundry and change the sheets on my bed. That

usually puts me back in touch with reality. And the only sick person I'm

taking care of is me and I'm a handful.

Maybe, there's some way you can test your abilities. Hit the shopping

centers all day several days in a row. Get away from the house for the

amount of time you would be working and then go home and deal with that

and see how you feel after several days.

A little bit of money coming in sure beats none.

On Tue, 6 Apr 1999 23:50:53 EDT IAMAVIPTWO@... writes:

>From: IAMAVIPTWO@...

>

>How many of you (lyme patients) would give up your disability to try

>to work

>again if you still were positive for lyme disease and babaeoious? I

>have to

>make that decision. I am also a widow, and have three kids, one in

>college,

>twin boys graduating from HS this year, and my mother is with me sick

>with

>lyme, my one son has lyme and babeasia, and is very ill.

>I feel I need to try to support us, but my symptoms come and go...you

>all

>know the routene. Your imput is greatly appreciated.

>(by the way, I can only work for a few months and then I become

>ineligible

>for the disability anymore)

>

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

>Start a new hobby. Meet a new friend.

>http://www.ONElist.com

>ONElist: The leading provider of free e-mail list services!

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

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

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

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

>

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[Guest guest]

Hi Gail,

This is mighty scary, you just cannot see down the line how you will

feel. I would hang on to the disability if you can, doesn't SSDI allow you

to make up to a certain amount while you are on disability? Or is that not

enough for you to make it? Is there some job you could do at home, maybe

with your computer? Maybe you could call your local Unemployment and Job

training office to find out if anything like this is available. My heart

aches for you and your situation. I recently got approved and finally

received my SSDI award. Money was tight before that, finally I can relax

and not have that stress anymore. There have to be some programs available

for you, maybe food stamps based on the size of your family and your income?

That would be a big help. Please let us know more details if you can, we

can maybe put our collective Lymebrains together and come up with a solution

for you.

Hugs,

Marta

> From: IAMAVIPTWO@...

>

> How many of you (lyme patients) would give up your disability to try to

work

> again if you still were positive for lyme disease and babaeoious? I have

to

> make that decision. I am also a widow, and have three kids, one in

college,

> twin boys graduating from HS this year, and my mother is with me sick with

> lyme, my one son has lyme and babeasia, and is very ill.

> I feel I need to try to support us, but my symptoms come and go...you all

> know the routene. Your imput is greatly appreciated.

> (by the way, I can only work for a few months and then I become ineligible

> for the disability anymore)

[Guest guest]

for over a year i tried to keep my job (i was on temp disability) it didn't

work....even now on a good day i look in the want ads and say hmmmmm maybe i

can return to work.....my wife laughs and she is right......i use to work 7

days a week 12 hour days at a great job and a side business....for the last 3

years forget it.....i can not handle the pressure and hours of work

anymore.....i was up this morning at 7 to take my daughter to scholl....she

gos early on wed. picked up the newspapers and came home read them till 9 and

fell asleep till 12:30......dont think any one would hire me like

that.....what i do is i make extra money by product testing( marketing

agency) and i work the election day polss for extra money it is not alot but

it is extra.....and it is non reportable....also i just read where we are now

allowed to make $700 a month instead of 500 and it will not affect our ss at

all.......call and check....

Reid

[Guest guest]

Dear Marta and group:

The situation is that I am on disability and recently learned that I can

collect widows benefits which will bring my income up to approximately 1300 a

month. My mom is sick and with me and she give me 300 a month towards food

etc. But...my health insurance is $576.00 a month plus the cost of meds, and

I have three adolescents.

One in college (junior year) and two just graduating HS. I also pay their

car insurance which is about $320 a month, plus taxes on my house and

utilities, phone food, yada yada y ada!!!! I can earn up to $500 a month on

SSI without losing my benefits. I am currently under my husbands former

insurance (health) under COBRA which will be up in December 1999. I am

eligible for medicare if I don't lose my disability. I have thought of

moving to somewhere else to live, but really ldon't want to leave my

daughter, and don't know where the boys will be next year. One is very ill

with lyme and bababesia....and my mom is too. so.,...you have all the facts

now. I don't know about health insurance for after December....but obviously

I need a good insurance carrier?????

So, I await the vote......

thanks for your imput in advance

Wishes for wellnesss,

Gail

[Guest guest]

:

I know you are right....I just keep thinking it woulld be so great to have a

life again.

But I should be grateful that I can walk and remember the three years I was

not able to walk or dress myself.

I always hate to let people down, especially employers/,my family...my self

esteem is in the sub-basement....anybody been there?

Kids want to know why Mom can't do all that other moms do????

I thank you.

Gail

[Guest guest]

Hello,

I read your letter, and I went back to work [light duty], and my lawyer

is working on a 9 month work trial period. Hope this helps.....good

luck!

KAREN