pain

[Guest guest]

Hi SerenaBee,

Lucky girl, being treated by Dr Burrascano. The majority of us are Lyme

Brain's so if you introduced yourself before, we probably forgot! I sure

can commiserate with you over the constant pain. I take pain meds

(Vicoprofen) about every 4-5 waking hours to make it through the day. I

used to get burning pain too, but the Neurontin I am taking has helped that

quite a bit. I worry about having to increase to stronger and more powerful

pain meds, I graduated from two darvocets to the Vicoprofen, but I know

others like you, who have had Lyme longer than me and who need these

medicines. I wish I had an answer for you about what to do to combat it,

but I just don't know. I often feel like I have run a marathon too, but I

came in last! LOL. I for one look forward to you posting with your

experiences and advice about Lyme disease.

Hugs,

Marta

>From: SerenaBee@...

>

>I think I have introduced myself before to this list but being a " Lyme

Brain "

>I cannot be sure.I want to thank everybody for being so open and sharing

>about their experiences with this horrible disease.I have been

> " officially " out of commision since sept,95 when everything came crashing

down

>and my world caved in.I have been a virtual invalid since then although it

>now seems that I was infected in childhood but misdiagnosed with

>ringworm.Finally startged iv treatment after spending two weeks at the

famous

>Mayo Clinic who never even tested me for Lyme Disease!!!!Amazing!Anyway I

got

>lucky and have been treated mostly by Dr.Burrascano in LI,NY.It is now

about

>five years on and off ivs and I have currently been taking a vacation for

the

>last two months from the antibiotics.About a week ago I relapsed and am

>probably going on Vancomycin iv and Gancyclovir to treat Stealth

Virus,which

>I am also infected with.Sorry for this long intro.I am wondering is there

>anyone in the group that has relentless joint,muscle,bone pain all over and

>feels like they have run a marathon (which is the sad part,lol) It has been

>so bad that I have to resort back to taking percocet all the time and just

>two days ago put on a 72 hr duralgesic patch that is used for cancer

>patients.The pain is driving me out of my mind and yet I know iv

antibiotics

>takes most of it away but I am trying to manage without.I still test

positive

>on the Luat and whole blood PCR,as well as a variety of these viruses. I

>would love any feedback and description of all over pain.My

>shoulders,wrists,hips,knees,and ankles are the wporst.Sometimes I just wish

I

>could pull my hands and feet off,ha,ha! Oh,also finger joints.I really do

not

>know how much remains permanent neurological damage or is active

infection.I

>also have serious brain malfunction, cognitive

stuff,etc,etc,etc.Help!Thanks

>for listening and I hope I can be of help as well to others struggling out

>there.

> Sincerely,Serenabee

>

[Guest guest]

Dear Marta

Thank you for your nice response.I just started trying this 72hr pain patch

that give meds transdermally usually used for cancer patients.Believe it or

not if I take two percocets every 6hrs in addition I have bee pretty

comfortable pain wise for the first time off ivs! This Lyme is a pain,LOL! At

least we all can maintain some semblance of a sense of humor,I hope. Will

keep you posted.Thanks.

Serenabee

[Guest guest]

I don't remember writing about this, but it sound good, what is it?

rheumatic PAIN

From: Cooky <cooky1@...>

In December/99 Jolly wrote about a supplement ...actually an

amino acid called DPLA or D LPhenylalanine. It is not the stuff they put

in OTC diet pills.

What is does is stop the enzymes that break down endorphins in the body.

It is a natural pain pill...and it works. I have been using it since

April and I feel like a new person at work and at home too. It works for

muscle pain associated with Fibro and as far as I'm concerned it works

for the RA pain too.

I want to say thank you to and I hope it is still working for

her. If anyone wants to try it make sure you get DLPA..must have the D

in it. I take 1000 mgms twice a day..must be on an empty stomach. She

suggested 3 weks on and 1 week off. Don't go over 1 week off or it will

not work when started again for a long time. I usually take mine in the

morning and then at 4PM.

cooky

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

[Guest guest]

I recently read an article about this is a Health magazine. The doc who

wrote the article said that he had never seen such a good inhibitor of pain

and he had highly recommended it for people with RA.

At 11:43 PM 7/4/99 -0700, you wrote:

>From: " J " <denisej@...>

>

>I don't remember writing about this, but it sound good, what is it?

>

>

> rheumatic PAIN

>

>

>From: Cooky <cooky1@...>

>

>In December/99 Jolly wrote about a supplement ...actually an

>amino acid called DPLA or D LPhenylalanine. It is not the stuff they put

>in OTC diet pills.

>

>What is does is stop the enzymes that break down endorphins in the body.

>It is a natural pain pill...and it works. I have been using it since

>April and I feel like a new person at work and at home too. It works for

>muscle pain associated with Fibro and as far as I'm concerned it works

>for the RA pain too.

>

>I want to say thank you to and I hope it is still working for

>her. If anyone wants to try it make sure you get DLPA..must have the D

>in it. I take 1000 mgms twice a day..must be on an empty stomach. She

>suggested 3 weks on and 1 week off. Don't go over 1 week off or it will

>not work when started again for a long time. I usually take mine in the

>morning and then at 4PM.

>

>cooky

>

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

[Guest guest]

Hi Folks,

I took DL-phenylalanine years ago for pain when I was on the fibromyalgia

diagnosis. I later discovered that it competes with tryptophan for access to

the brain for the production of serotonin. (tryptophan is the precurser to

serotonin) Actually tryptophan is out-competed by virtually all of the amino

acids for access to the brain, which is why high-protein diets lead to a

serotonin deficit if you don't have mondo-quantities of it already. This is

also why diets to fight pain emphasize complex carbohydrates as the majority of

any meal with animal protein only making up 20-30% maximum of any food intake

at a given time. This triggers the insulin reaction which drives all the

competing amino acids into the muscles, allowing the tryptophan to follow its

route to the brain for serotonin production relatively unimpeded. And believe

me, the diet works amazingly well.

Anyhoo, thought I'd throw this in. So if you take the DL-phenylalanine and

start being more foggy than usual, or sleeping worse then usual, or even having

more pain than usual, this is probably the culprit.

Just my experience,

Jan K

M Carroll wrote:

> From: M Carroll <LCARROLL@...>

>

> I recently read an article about this is a Health magazine. The doc who

> wrote the article said that he had never seen such a good inhibitor of pain

> and he had highly recommended it for people with RA.

>

>

> At 11:43 PM 7/4/99 -0700, you wrote:

> >From: " J " <denisej@...>

> >

> >I don't remember writing about this, but it sound good, what is it?

> >

> >

> > rheumatic PAIN

> >

> >

> >From: Cooky <cooky1@...>

> >

> >In December/99 Jolly wrote about a supplement ...actually an

> >amino acid called DPLA or D LPhenylalanine. It is not the stuff they put

> >in OTC diet pills.

> >

> >What is does is stop the enzymes that break down endorphins in the body.

> >It is a natural pain pill...and it works. I have been using it since

> >April and I feel like a new person at work and at home too. It works for

> >muscle pain associated with Fibro and as far as I'm concerned it works

> >for the RA pain too.

> >

> >I want to say thank you to and I hope it is still working for

> >her. If anyone wants to try it make sure you get DLPA..must have the D

> >in it. I take 1000 mgms twice a day..must be on an empty stomach. She

> >suggested 3 weks on and 1 week off. Don't go over 1 week off or it will

> >not work when started again for a long time. I usually take mine in the

> >morning and then at 4PM.

> >

> >cooky

> >

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

[Guest guest]

----------

> From: BRIAN VAUGHAN <bvaughan@...>

> jkirsten@...

> Subject: Pain

> Date: Monday, July 05, 1999 4:57 PM

>

> I was looking in Prescription for Nutritional Healing and saw DLPA

complex

> mentioned under Herbs for pain. It says under CAUTION: Do not take a

> product containing phenylananine if you are pregnant or nursing, if you

> take a MAO inhibitor drug, or if you suffer from panic attacks,diabetes,

or

> phenylketonuria. Also to started on the lowest dosage if you have high BP

> and monitor. Just thought I would add that to whats already been said.

>

>

[Guest guest]

,

I have been in awful pain. I have had problems with my Skiatica nerves,

which the doctor thinks could be PA related. I went in for phsical therapy

and they couldn't help me as I can't to any free weights with my PA. The

therapist is sending me to water therapy, different than the kind that I've

been doing. She said my lower back is so tight that I have most likely got

disc problems. I have severe shooting pain down my hips into my legs. I

have severe hip pain just sitting here. I'm not having spasms right now, but

sometimes they are so severe that I can't walk. I'm taking muscle relaxers

which help, but add to my fatigue. I am depressed!!! I'm in pain!!! And

after a weekend which required a good attitude and much walking (with my

cane), I'm ready for a wheel chair! I'm going to see an Orthopedic and am

off to Stanford again next week. I'm hurting girl and trying to keep up

appearances while my house is falling apart. I guess I'm just down, I'm sure

it's the pain.

Keep in touch.

Amy

[Guest guest]

Dear Amy,

Chances are good that the pain and back and muscle troubles are all related

to the PA. It sounds just like me a few years ago. I was even recommended a

fusion way back when, and mistakenly agreed to carpal tunnel release and

tennis elbow surgery before I was diagnosed with the PA! As my doctor says

now " That is a radical way to treat arthritis - just cut it out! "

Stay away from Orthopedic surgeons as long as you can. They want to help

you, but the only way they know is by cutting.

How about your Rheumatologist? Can't you go to him to get some pain meds -

sounds like you could use Duragesic Patch at this point. Then discuss

switching around your meds again. I just added in

Mtx with the Arava - one week so far - no results. I know it will take up to

six weeks to see anything. In the meantime, I had to virtually cancel my

life. It stinks!

[Guest guest]

Hi Everybody,

My neck and back pain have gotten progressively worse even though I was

on Doxy, and now Biaxin. Does this mean that the abx aren't working? I'm

starting to think that nothing will help me since I've more than likely

been infected for 10 yrs.

Does anyone take anything for the pain that helps them?

Thanks, Joan LI, NY

[Guest guest]

The Dr. put me on Celebrex 200mg. He said that is the

best med out there. I wouldn't know. He said they

just approved the 400mg strength. It is not a pain

killer however, just an anitinflamitory. I started

taking it today, and I don't feel any different, but I

need to give it time. I'm sorry you are in so much

pain.

Liz

===

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

+ Your only offense is being on the defense -- Rev. E. Kelso +

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

_____________________________________________________________

[Guest guest]

--- " Joan S. " <Namkrats3@...> wrote:

> From: Namkrats3@... (Joan S.)

>

> Hi Everybody,

> My neck and back pain have gotten progressively

> worse even though I was

> on Doxy, and now Biaxin. Does this mean that the abx

> aren't working? I'm

> starting to think that nothing will help me since

> I've more than likely

> been infected for 10 yrs.

>

> Does anyone take anything for the pain that helps

> them?

> Thanks, Joan LI, NY

>

> Joan-

Sounds like we are following the same path. I saw my LLD yesterday and

told him that the pain in my entire upper body is getting worse. I am

also on Doxy. After poking around and doing another neuro exam he

decided that it is what he called a Chronic pain cycle and put me on

Ultram,Relafen and Zoloft. I started it last night and it takes the

edge off but the pain is still there. I know it will take time for it

to work as well. The biggest problem is that I am completely gorked out

and although I hate to feel this way my doc said that is what it may

take to get everything to relax and break this cycle. He is not a big

one for heavy pain meds so we tried Celebrex and Arthrotec first. Got

some relief for a few weeks but then it just quit working so now its

time for the big guns.

I asked the same question about the abx not working and if I should

increase the dose and he wants to try this first to see if we can break

the cycle.

Might be something to discuss with your doc.

L(MI)

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

[Guest guest]

Hi Joan,

I have significant pain too with my Lyme disease. I have felt especially

bad the last few days, guess I am herxing, who knows, I have gotten online

for a bit each morning, and have not even been able to get through my mail,

have to lie down, and then spend the day in bed. I am presently taking

Vicoprofen, and if I get up during the night with pain (no food) I take two

Darvocets, lately they only take the edge off. I guess I am lucky that the

pain is not constant, it is just fleeting. Much of my pain probably has a

lot to do with my nerve damage, so I increased my Neurontin back up to 900mg

a day, yet still have pain. Last night it felt as if someone was holding a

lit match under my right foot. Didn't know what to do for it....finally it

diminished.

As for your neck pain, I have a lot of that too, due to Herniated discs,

I use a special cervical pillow, which helps, and I use my heating pad quite

often. I have a three foot long one, I can use it for both my neck and

lower back.

I hope these suggestions work for you, I know what you mean about

thinking nothing will help, I do find the longer I have this disease the

worst the pain, that scares me a lot.

Hugs,

Marta NJ

From: Namkrats3@... (Joan S.)

Hi Everybody,

My neck and back pain have gotten progressively worse even though I was

on Doxy, and now Biaxin. Does this mean that the abx aren't working? I'm

starting to think that nothing will help me since I've more than likely

been infected for 10 yrs.

Does anyone take anything for the pain that helps them?

Thanks, Joan LI, NY

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

[Guest guest]

In a message dated 8/10/99 12:50:19 PM Central Daylight Time,

busy91@... writes:

<<

The Dr. put me on Celebrex 200mg. He said that is the

best med out there. I wouldn't know. He said they

just approved the 400mg strength. It is not a pain

killer however, just an anitinflamitory. I started

taking it today, and I don't feel any different, but I

need to give it time. I'm sorry you are in so much

pain. >>

I took Celebrex 200mg for a month with absolutely no effect. Now I take

2400mg of ibuprofen a day and it does lessen the pain.

[Guest guest]

Hi Joan,

The only think that has worked for my lyme muscle/joint pain is Zithromax 600

mgs each day, for more pain relief I take Darvocet, sometimes a Vicodin (not

too often) But sometimes over the counter stuff like Aleve, Ecotrin, etc

will surprise me and work. This damn lyme doesn't know what it is doing.....

Hugs, And I wish you pain free. Everytime I go off Zithromax the severe

muscle/joint pain returns, doc said it is somehow keeping my lyme at bay or

under controll. I don't know, they better bury me with a bottle of

Zithromax, that's for sure.

Hugs, again,

Connie, MI

PS> Did you ever get that article from business week on pain, I dont have it

in the computer, but would mail it to you. Also Dr. L when he spoke here

said there is a percoset patch, that works wonders and it non addicting, he

uses it a lot for his ly mies.

[Guest guest]

Hi Connie,

I'm glad and interested to hear that Zithromax fights your spirochetes

to the point of giving you less pain. I've been on Biaxin for 2 months,

which followed 3 weeks of Doxy, and unless I've had a 3 month long

Herx....they don't seem to have helped at all!!! I'll talk to my LLMD

about it when I see him on the 23rd. In the meantime, I've been taking

Tylenol at night, but not during the day because I don't want to upset

my liver values, and it seems that Ibuprofen is a no-no....

I'd be interested in that article you have on pain, but don't go out of

your way if you're not up to it. :+)

Hugs,

Joan Starkman

146 Blake Ave.

Bohemia, N.Y. 11716

[Guest guest]

Hi Golfdawg,

I've found Ibuprofen to be very helpful before I was dx'd with Lyme.

Since then, I've read that it supresses the immune system Has your doc

Ok'd your taking it? Thanks, Joan LI, NY

[Guest guest]

Hi Again Marta,

Sorry you've been feeling so bad, too. I thought I might be Herxing,

since technically this would be my 12th week of abx...but I don't know.

I feel lousy inbetween these suspected Herxes, too!!!

What is Vicoprofen? Is it what it sounds like...a combination of Vicodin

and Ibuprofen? If so, I can't take Vicodin, but the Darvocet sounds

good. I will also have to get a cervical pillow...and the 3 ft. long

heating pad sounds great!

Take Care, Joan LI, NY

[Guest guest]

Hi ,

I am going to talk to my LLMD about the increase in pain. It's scary. I

have soooo many symptoms now that I could be the poster girl for Lyme

disease!

How have you been doing since your unfortunate time last week? Also, how

is your daughter doing on abx?

Feel better soon, Joan LI NY

[Guest guest]

Hi Liz,

I hope the Celebrex works for you. Let us know. Also, thanks for the

nice thoughts.

Take care, Joan LI NY

[Guest guest]

--- " Joan S. " <Namkrats3@...> wrote:

> From: Namkrats3@... (Joan S.)

>

> Hi ,

> I am going to talk to my LLMD about the increase in

> pain. It's scary. I

> have soooo many symptoms now that I could be the

> poster girl for Lyme

> disease!

>

> How have you been doing since your unfortunate time

> last week? Also, how

> is your daughter doing on abx?

> Feel better soon, Joan LI NY

>

> Joan-

I know what you mean about being poster girl. Things are going ok since

last week. I think that all the stressful events may have been what

triggered this chronic pain cycle. I know stress sure adds to our

symptoms so it makes sense.

Ang is doing better. She has had a few good days this week so far so we

are hopeful that it is going to continue to go upwards and not slip

back.

If you do want to try this combo beware. It really zonks you and I have

been sleepwalking since starting it. The kids take turns sitting up to

catch me and put me back to bed. It is really strange. I have no recall

of doing it and I really dont do anything just wander around. Good

thing the kids are keeping an eye on me or who knows where I would end

up.

Take care,

L(sleepwalking in MI)

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

[Guest guest]

In a message dated 8/11/99 2:03:38 PM Central Daylight Time,

Namkrats3@... writes:

<< I've found Ibuprofen to be very helpful before I was dx'd with Lyme.

Since then, I've read that it supresses the immune system Has your doc

Ok'd your taking it? Thanks, Joan LI, NY >>

My CFIDS doctor (who I also see for my immune system dysfunction) looked at

my list of meds last week and didn't see anything out of line. I did not

specificially ask her about ibuprofen. Of course, all the abx we are taking

is certainly an immune suppressant.

[Guest guest]

Hi Reid honey,

I was just having a bad day and hope you can forgive me for being so

sensitive about that damn thread. Too much turmoil going on in my life

right now, and I should know better than to post when I am feeling this

stupid. Everyone made good points about the pain meds and possibility of

addiction. I am still taking them and will continue I guess till pain stops

or I find a better way to deal with the pain.

I am so happy your Mom recovered from the big " C " There have been great

strides in medicine since my grandparents died from it. I imagine when it

is my turn they will be able to cure it too, if it has not become too

complicated from the LD. As for a cure for LD in my lifetime, I am

optimistic, but agree with you that some of us have already had irreversible

damage from the damn Bb.

Much love,

Marta

> From: RMcmur3194@...

>

> marta....thanks and thanks to the group for not jumping on me over a not

real

> popular stand i guess....as for the cancer thing .....i really sometimes

feel

> that way....not only for respect but my mom is a cancer survivor while it

was

> not easy between surgery and chemo/radiation....she is now cancer

> free.... " cured " !!!! in the mean time i no longer(sorry group) hold on to a

> feeling that lyme will be cured in my lifetime and have been told point

blank

> that even if i ever become " cured " that lyme disease has allready done

> irrepairable harm to my body....that will not leave when and if the spiros

> do...mom never could understand how i was feeling ...always said get up

and

> move u'll be allright....TILL SHE WENT THRU CHEM/RADIATION.....well she

found

> out what total exaustion and pain felt like....close to how i live

> everyday.....she no longer makes comments like she use to....takes one to

> know one......love to all

> Reid

[Guest guest]

In a message dated 00-02-02 07:17:25 EST, you write:

<< Too much turmoil going on in my life

right now, and I should know better than to post when I am feeling this

stupid. >>

Dear Marta,

I'm really behind on mail here - but had to respond to this one.

We're all here to support each other - post away - whether it's a good or bad

day - we're all here to support you & each other!

HONK HONK!

Blessings & velcros

Chris

[Guest guest]

The doctor has suggested Enbrel for , but she's refusing it, she hates

needles. We feel it's important for to have a say in her treatment,

and won't force her to do anything she really doesn't want to. The doctor

has suggested other things that she has refused, chemo for one. has

always been healthy before this, the only shots she had were her

immunizations. And the only time she had to go to the doctor's before this

was for check ups, and once for an allergic reaction to chlorine, that was 6

years ago. Except when she was a baby, when she had ear infections and

colds. She's been my healthiest child before this.

Thanks for the pillow suggestion, it sounds pretty good. Now if I can talk

into trying it. She usually sleeps on her stomach. And thanks Bill

for contacting Ms. White for me, I'll let you know what I hear.

Melody

[Guest guest]

Dear JB,

Have you checked into what is causing such a pain? That is a problem

with those of us who really have a lot of pain. We tend to blame everything

on this disease and may overlook the symptoms of something even more

serious.

Well, I take Celebrex, but my doctor gave me vicodin when I was herxing

really badly with Biaxin. I still need to take it, but I take it as little

as possible and 1/2 pill at a time. It supposedly interferes with the

antibiotic.

Does anyone know something better for pain than vicodin?

Thanks,

Gloria