hi

[Guest guest]

Dear Sue,

I was on iv rocephin for 4 weeks and had to discontinue due to gallstones

that had me in the emergency room. What a nightmare that was. I would rather

give birth to twins!!!lol I am now taking maxipime IV. Because I was off

all meds for 5 days I was thrown into a full blown herx. Also they found out

that my liver enzymes were extremely elivated: they were 475, normal is

between 20- 40. I felt extremely good while on rocephin, now I feel horrible.

I feel for you, I'm right there in the same boat. I'll pray for you.

God Bless you,

Sandy

[Guest guest]

Sue,

Did your doctor follow up with orals after the IV?

Hope you r feeling better,

[Guest guest]

Dear Sue,

Hi. This must be a nightmare for you. I'm so sorry you're getting the

symptoms back. Did you start to feel better after you went off the IVs?

What does your dr say about all of this? I have a feeling you haven't

told him because of the holiday. You should, because he might put you on

orals until the holidays are over. Can you tell me what 3T in the urine

means?

Let us know how you're doing.

God bless,

P. S. It sounds like the 4 week cylce that happens with lyme

KAREN

[Guest guest]

3+ means there was that much blood in my urine. which is quite a bit of

blood showing up for no reason. sue

RVKLA@... wrote:

> From: RVKLA@...

>

> Dear Sue,

> Hi. This must be a nightmare for you. I'm so sorry you're getting the

> symptoms back. Did you start to feel better after you went off the IVs?

> What does your dr say about all of this? I have a feeling you haven't

> told him because of the holiday. You should, because he might put you on

> orals until the holidays are over. Can you tell me what 3T in the urine

> means?

> Let us know how you're doing.

> God bless,

> P. S. It sounds like the 4 week cylce that happens with lyme

>

> KAREN

>

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

>

[Guest guest]

,

do you possibly have a yeast problem? I had blood showing up in

my urine due to yeast growing there. This was long before I had

Lyme (that I know of, anyway). When they cultured my urine

looking for bacteria, all they grew was yeast.

Have you tried taking a lot of vitamin C to acidify your urine?

That helped kill the yeast off in my case.

[Guest guest]

Hi sue and everybody,

I sent an E-mai to dateline , also asking them to air a segment on LYME

disease.

Anyone interested in sending an E-mail. here is their address:

dateline@...

Thanks Sue for the great suggestion!

KAREN

[Guest guest]

In a message dated 12/29/98 2:33:20 PM Eastern Standard Time, RVKLA@...

writes:

<< dateline@... >>

thanks for the e-mail address....

Hugs

Amy

[Guest guest]

Sue,

I don't know if your insurance covers ie, but I started Physcial thearpy a

month ago. It has definatly helped me. I go 3 times a week and first they

start with heat,ultra sound, massage, and light muscle building activity. I

only can do 5 minutes!!! I know this is not treating my disease, but it is

helping me cope better with the pain. I hope you feel better soon. Take care,

P.S. Does your doc have you on orals inbetween IV?

[Guest guest]

Dear Sue: How are you feeling? It's been almost 4 weeks since I've

been off the Rocephin, and I feel lousy - night sweats, and still have

photophobia and huge amounts of fatigue. They put me on Amantadine,

which is an anti-viral medication for the fatigue, but I don't notice

any difference.

Let me know how you're doing.

Lovette

[Guest guest]

Sue,

That's a good idea to stay on orals. My first doctor would not put me on

orals after IV. I would always do better then fall right back down until I

was on treatment again. I'm not a doctor, but I think you need orals as a

follow up after IV treatment.

Feel better,

chrisitine

[Guest guest]

Im not doing so well. Im having severe joint pain and swelling of my fingers

and for some reason i keep having rib cage pain! goes from one side to the

other. Im so tried of this!!!!

I thought after the ivs i would feel better i felt great while i was on the

ivs but now feeling lousey again. have no energy to do anything. I guess

when my dr gets back from vacation were going to talk about going back on

the ivs. Dont know if it will help but what the heck if it makes me feel

good for a while i guess its worth it! Thanks for asking about me. Hope u

start feeling better soon. sue

" F. Mott " wrote:

> From: " F. Mott " <smott@...>

>

> Dear Sue: How are you feeling? It's been almost 4 weeks since I've

> been off the Rocephin, and I feel lousy - night sweats, and still have

> photophobia and huge amounts of fatigue. They put me on Amantadine,

> which is an anti-viral medication for the fatigue, but I don't notice

> any difference.

> Let me know how you're doing.

>

> Lovette

>

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

>

[Guest guest]

Hi christine, I wasnt on orals at 1st but i had some zithromaz here at the house

and started it a few days ago cause i had a sinus infect and i think im just

going to stay on it til i talk to the dr sue

Prinny328@... wrote:

> From: Prinny328@...

>

> Sue,

> I don't know if your insurance covers ie, but I started Physcial thearpy a

> month ago. It has definatly helped me. I go 3 times a week and first they

> start with heat,ultra sound, massage, and light muscle building activity. I

> only can do 5 minutes!!! I know this is not treating my disease, but it is

> helping me cope better with the pain. I hope you feel better soon. Take care,

>

> P.S. Does your doc have you on orals inbetween IV?

>

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

>

[Guest guest]

Sure sounds like you guys are having such a bad time of it. I tell you, DON " T

GIVE UP> I was so sick......I can't even tell you, I couldn't walk or dress

or anything.

Now ...I'm still on abx..continually, but can function sometimes normally, I

can go a few weeks feeling pretty good. I know I may have to be on meds all

my life, but if so and it makes life bearable, so be it. I hope and pray for

your recovery.

Hugs, and Warm wishes,

Gail

[Guest guest]

wrote:

>

> From: <gizmo@...>

>

> Im not doing so well. Im having severe joint pain and swelling of my fingers

>

Dear : I'm sorry you're not doing well. I was hoping one of us

would make it over the wall! I too had hand and finger swelling after

the IV, but it seems to have subsided.

Tomorrow is a big day for me. I go for cognitive neuropsychological

testing [paper and pencil stuff] to see if they can pinpoint my

problems. We'll find out if I've lost my marbles, or just misplaced

them!

Lovette

[Guest guest]

Dear Gail,

This week marked the second year of IV use and 2 1/2 years of oral abx

use. I am at the point where I sort of feel if this was going to work it

would have already. My homecare nurse keeps telling me I am surpressing

bone marrow production and I have totally destroyed my immune system.

The neuro I went to for nerve pain told me it is the chronic use of abx

that causes this pain. I want to believe my Lyme doctor. I NEED to

believe my Lyme doctor but sometimes I falter. What is your honest take

on the constant use of abx? I definitely feel better ON them.....but

sometimes I just get so scared!

Happy New year, by the way!

Alison

--

[Guest guest]

Hi Alison dear friend,

I can't figure out how your neuro could conclude that constant abx would

cause pain???? Makes no sense to me.....did you tell your Lyme doc that

one? I am with you, I have not been on as much abx as you have, but I have

been virtually nonstop on abx for over 2 and a half years now....I stopped

taking them for about a week once, and felt awful when off. I think you are

right, we must trust one of our doctors and hope for the best.

Love,

Marta

>From: Alison E Schettini <alison7@...>

>

>Dear Gail,

>This week marked the second year of IV use and 2 1/2 years of oral abx

>use. I am at the point where I sort of feel if this was going to work it

>would have already.

[Guest guest]

,

can you possibly prepare something in writing for the drug rep to

present...someone else could read it???? Be sure to mention how much hope

you have for Dr Mattman's and new Lyme test that can culture Bb in

the blood.....I would think the vaccine people would be thrilled about that

as well.

Marta

>From: <gizmo@...>

>

>Hi everyone! i thought i would let u know what happened to me today. I

>was at work and the drug rep that works for the company that is coming

>out with the new inject for lyme dis wanted me to come and speak at a

>meeting friday to a bunch of drs and drug reps about my expereince with

>my lyme dis.

[Guest guest]

Hey, Marta, it is GREAT to see you back! I have been SO incredibly

worried about you!

Yes I told my doctor about the neuro's opinion that the nerve pain was

being caused by the abx and she told me there was NO WAY that could

happen. So I believe her because I liked her better anyway and because I

HAVE to believe her! If I stop, I might as well give up!

I hope that this means you are coming around after this last

siege........

Stay warm in all the snow!

Hugs,

Alison

--

[Guest guest]

> i seeing him this june 30,1999 to see if he can increase

> the mex. the reason is it start to wear off in the middle of the week.

> when i was on the pills i took six of them. with the shot i take 6mgs is

> their any difference.

bunnylane,

Each of the pills is 2.5 mg. So 6 pills is equal to 15 mgs. That's quite a

bit more than the 6 mg that you are getting in your shots! Although, I've

never had shots (except maybe once 20 years ago), I've heard that the shots

are more effective in delivering the medicine to your system, and therefore

you might require a little less. But a reduction from 15 mg in pill form to

6 mg shots doesn't seem right. And your experience of having the mtx wear

off before in the middle of the week certainly indicates that you're not

getting enough.

Good luck until you see your doctor.

Rick G

[Guest guest]

Hi Gloria,

It is common for the methotrexate to start to " wear off " during the week. My

doctors response had always been to increase the shot. 6 mgs doesn't make

sense for a Methotrexate dose. If you are on 60 mgs. that would be the

highest dose I have ever seen used in PA. After the 60 mg.s needs to be

helped along with another drug -- my doctor added in Neoral first. Later we

tried Imuran.

Good Luck Gloria

Keep us posted

[Guest guest]

> what is 6mg of methotrexate equal to in pills. itook 2.5of six pills so if

i

> did take that what would i take in liquiod form in mgs . like i said the

> doctor is the only doctor in kinston for arthritis. just my luck. so if

> anyone know please let me know so when i call this doctor he can change it

> thank you. bunnylane@...

hi,

Your 6 mg (in liquid) is almost 2 and a half pills. But, like I said before,

injecting it might be a little more effective.

The 6 pills that you took before, was a total of 15 mg.

NOW: 6 mg liquid = 2 1/2 pills

BEFORE: 15 mg = 6 pills

You're getting a lot less than you used to. Now, you're getting 6 mg, but

you used to get 15 mg. That seems like a big difference, even considering

that it's more effective to inject it. If your doctor isn't going to

increase it, he should at least tell you why not!

Rick G

[Guest guest]

I just went to the site LymeDizzez@... Mentions. This is the site I went to:

http://members.tripod.com/LymeDizzez/

Midway through the article is a section titled Neurologic Symptoms of Lyme

31-46. I am familiar with those

symptoms of ataxia, myoclonus and other symptoms. The two relevant paragraphs

are copied below:

In considering the behavioral symptoms, these patients can become suddenly

suicidal and there have been

completed suicides attributed to

Lyme disease. Homicidal ideation, urges, and behavior occur in some of

these patients. Some adult

patients describe struggling to not act on

these urges. When these patients act on a homicidal urge, more

commonly it is a child becoming

assaultive to a sibling. Dissociative episodes

sometimes occur with these patients occasionally accompanied with

aggressive behavior and loss of

memory.

Compensatory compulsions are common in an effort to compensate for the

memory deficits. NPLD can

imitate a number of common psychiatric

syndromes. It can be difficult to differentiate Lyme disease from

rapid cycling Bipolar illness or

Posttraumatic Stress Disorder. Eating disorders

are common. Invariably these patients either gain or lose weight.

Sometimes massive weight gain is

also seen.

Neurological symptoms have been previously recognized as a

component of Lyme disease (31-46).

Cranial nerve findings begin before the

cognitive changes are seen and can intensify again late in the course

of the illness. There are times

when the cranial nerve findings are more

evident late in the day when the patient becomes tired and they

acquire double vision, choke on food,

or lose their ability to talk. Grand mal

seizures are more significant with congenital Lyme cases, while

complex partial seizures are seen in

a notable percent of other NPLD patients.

These seizures are effectively controlled with both anticonvulsants

and antibiotics. Some

neurological findings are common such as numbness,

tingling, sensory loss, burning, weakness, tremors, myoclonic jerks.

torticollis, and fainting.

Ataxia is common in these patients who are often

clumsy, which leads to frequent accidents. Myotonia is uncommon but I

have been this in a few

patients, and Parkinson's syndrome caused by

Lyme disease can also seen, although it is uncommon. A number of these

patients have herniated discs

after having Lyme disease for several

years. I suspect, but cannot prove, there is a causal relationship

between Lyme disease and herniated

discs. Burning is quite specific to NPLD,

but is also seen in herpes infections. The patient describes a

sensation that a blowtorch is burning

the skin. It can affect any part of the body. In

some patients the burning migrates, while in others it remains in a

given area. Both antibiotics and

anticonvulsants relieve this symptom.

The reason that I am bringing these symptoms to your attention is because my

father died of Creutzfeldt s

Disease in 1997. Many people call this mad cow disease. Our govt. says nobody

gets this disease in America and

that is untrue. Now please don't think that I am a doctor ! I'm not. I'm just a

family member who saw his

father die from Mad Cow Disease. I do want to remark upon some of the similar

symptoms. Ataxia ( wide stance)

Myoclonus (Parkinson's like tremors) hallucinations, aggression and others. I

read about this (CJD) quite a bit

and discovered that while it may indeed be spread by infected beef other people

who for their own reasons have

never eaten meat get this disease at roughly the same demographic rate of 1.25

per million. This leaves the

suggestion of another method of infection. An EEG will show an unusual spike

that is a clue for CJD. These

Three diseases have a unique protein rod formation in the brain. Altzheimers,

Parkinson's and CJD. At this

point I am curious to discover any relationship between these afflictions. The

other diseases are called

proteinease diseases or PRION diseases.

I would be very interested in hearing what anybody has to say about this. Please

remember, I'm not a Doctor and

while I have read quite a bit I am only a layman. Dr. Stanley Pruisner won the

NOBEL prize for his discovery of

PRION diseases.

Thank you,

Wes Witten

LymeDizzez@... wrote:

> From: LymeDizzez@...

>

> I just wanted to share this with all of you. I just finished talking to a

> woman who lives in Arizona. She is the first documented case of Lyme Disease

> for that state. She has just learned that she is no longer alone in dealing

> with Lyme Disease and was a bit surprised to learn that she is not the only

> one with our symptoms. I needed to share this with you because the chat room

> was originally set up as a gift to me from a very good friend. I just thought

> it would be a nice place for us to chat. When I finished speaking with that

> woman, I felt drained and exhilarated. My goal is to help as many fellow

> Lymies as I can but to hear relief in words that are typed was something I

> never expected to experience.

>

> I know, LOL, I'm rambling. But each time someone else learns they are not

> alone, I get all emotional and I know that all of here in this group are

> doing a good thing spreading the word.

>

> No one should have to deal with Lyme Disease alone.

>

> , New Bedford, MA.

> Friday, August 20, 1999

> You'll find a support chat room: <A

> HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

> ICQ # 26791014

> Need a new FREE E-mail Address: <A

> HREF= " http://phreemail.phlexgrams.com/email/scripts/loginuser.pl " >PhlexGrams

> Phree E-Mail</A>

> Get Paid to surf the net: <A

> HREF= " http://www.gotoworld.com/getpaid/default.asp?rid=1019160708 " >GoToWorld:

> Get Paid</A>

>

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

[Guest guest]

Hi Wes,

Welcome to the list! So sorry to hear about the loss of your father. Lyme

disease has been called the great imitator, and for good reason, the testing is

unreliable, and many of the symptoms mimic other diseases. The article you

quoted from Dr Bransfield (an excellent doctor by the way) does a great

job of explaining the neuropsychiatric effects of this disease. Many of us with

Lyme disease have been misdiagnosed with the following diseases: Multiple

sclerosis, Rheumatoid Arthritis, Chronic Fatigue, fibromyalgia, Parkinson's, Lou

Gehrig's disease and many, many more. Recent studies have shown that some of

these diseases may have a bacterial etiology. Many of us, involved with this

disease for a period of time have long suspected that there are thousands, maybe

millions of people who have developed the diseases mentioned above, but may have

contacted Lyme disease at one time in their life, and were not treated. As you

continue your studies about this disease, you will see why we feel this way, the

key is how the patient responds to antibiotic treatment, if it helps, it is most

likely Lyme disease. Some of the ticks are so tiny, one would never know they

were bitten, or if they recall a bite, their immune system may fight the disease

well enough to allow the disease to go into remission, only to rear it's ugly

head years later, maybe at a time of stress, or a compromised immune system due

to another illness. The problem is, we cannot get some physician's or

researchers to believe this possibility. I have not heard of Lyme being misdx'd

as CJD, but it would not surprise me.

There were studies done in Switzerland years ago, where autopsies were

performed on patients who died of Lou Gehrig's (I know there is another name, it

eludes me right now) and spirochetes were found in the brains of most of them.

I know you reside in Oklahoma, as we have corresponded off the list, and you

have found that most doctors in that state will tell you there is no Lyme

disease. Art Doherty from California has compiled a wonderful list of Lyme

disease as reported in the US and Canada, please check out his website:

http://www.geocities.com/HotSprings/Spa/6772/oklahoma-index.html

Art also has compiled pages of studies that show that Lyme has been misdx'd as

other diseases, check out this site:

http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html

Best to you,

Marta NJ

I just went to the site LymeDizzez@... Mentions. This is the site I went

to: http://members.tripod.com/LymeDizzez/

Midway through the article is a section titled Neurologic Symptoms of Lyme

31-46. I am familiar with those symptoms of ataxia, myoclonus and other

symptoms. The two relevant paragraphs are copied below:

In considering the behavioral symptoms, these patients can become

suddenly suicidal and there have been completed suicides attributed to

Lyme disease. Homicidal ideation, urges, and behavior occur in

some of these patients. Some adult patients describe struggling to not act on

these urges. When these patients act on a homicidal urge, more

commonly it is a child becoming assaultive to a sibling. Dissociative episodes

sometimes occur with these patients occasionally accompanied with

aggressive behavior and loss of memory.

Compensatory compulsions are common in an effort to compensate for

the memory deficits. NPLD can imitate a number of common psychiatric

syndromes. It can be difficult to differentiate Lyme disease from

rapid cycling Bipolar illness or Posttraumatic Stress Disorder. Eating disorders

are common. Invariably these patients either gain or lose weight.

Sometimes massive weight gain is also seen.

Neurological symptoms have been previously recognized as a

component of Lyme disease (31-46). Cranial nerve findings begin before the

cognitive changes are seen and can intensify again late in the

course of the illness. There are times when the cranial nerve findings are more

evident late in the day when the patient becomes tired and they

acquire double vision, choke on food, or lose their ability to talk. Grand mal

seizures are more significant with congenital Lyme cases, while

complex partial seizures are seen in a notable percent of other NPLD patients.

These seizures are effectively controlled with both

anticonvulsants and antibiotics. Some neurological findings are common such as

numbness,

tingling, sensory loss, burning, weakness, tremors, myoclonic

jerks. torticollis, and fainting. Ataxia is common in these patients who are

often

clumsy, which leads to frequent accidents. Myotonia is uncommon

but I have been this in a few patients, and Parkinson's syndrome caused by

Lyme disease can also seen, although it is uncommon. A number of

these patients have herniated discs after having Lyme disease for several

years. I suspect, but cannot prove, there is a causal relationship

between Lyme disease and herniated discs. Burning is quite specific to NPLD,

but is also seen in herpes infections. The patient describes a

sensation that a blowtorch is burning the skin. It can affect any part of the

body. In

some patients the burning migrates, while in others it remains in

a given area. Both antibiotics and anticonvulsants relieve this symptom.

The reason that I am bringing these symptoms to your attention is because my

father died of Creutzfeldt s Disease in 1997. Many people call this mad cow

disease. Our govt. says nobody gets this disease in America and that is untrue.

Now please don't think that I am a doctor ! I'm not. I'm just a family member

who saw his father die from Mad Cow Disease. I do want to remark upon some of

the similar symptoms. Ataxia ( wide stance) Myoclonus (Parkinson's like tremors)

hallucinations, aggression and others. I read about this (CJD) quite a bit and

discovered that while it may indeed be spread by infected beef other people who

for their own reasons have never eaten meat get this disease at roughly the same

demographic rate of 1.25 per million. This leaves the suggestion of another

method of infection. An EEG will show an unusual spike that is a clue for CJD.

These Three diseases have a unique protein rod formation in the brain.

Altzheimers, Parkinson's and CJD. At this point I am curious to discover any

relationship between these afflictions. The other diseases are called

proteinease diseases or PRION diseases.

I would be very interested in hearing what anybody has to say about this.

Please remember, I'm not a Doctor and while I have read quite a bit I am only a

layman. Dr. Stanley Pruisner won the NOBEL prize for his discovery of PRION

diseases.

Thank you,

Wes Witten

[Guest guest]

>>>These Three diseases have a unique protein rod formation in the brain.

Altzheimers, Parkinson's and CJD. At this point I am curious to discover any

relationship between these afflictions. The other diseases are called

proteinease diseases or PRION diseases.

I would be very interested in hearing what anybody has to say about this. Please

remember, I'm not a Doctor and while I have read quite a bit I am only a layman.

Dr. Stanley Pruisner won the NOBEL prize for his discovery of PRION diseases.

<<<

welcome wes.

i am sorry about your dad. my mum died about 20 months ago. it isn't easy...

i had this filed. is there a connection here with the proteinese you mention?

peace,

kay

> HIV PROTEASE INHIBITORS MAY DIRECTLY INHIBIT CANDIDA

> Italian investigators report evidence that, along with having potent

> antiretroviral effects, protease inhibitors may exert a direct

> anticandidal effect in HIV-infected patients.

> http://id.medscape.com/11005.rhtml

> <a href= " http://id.medscape.com/11005.rhtml " >Read it Here</a>

>

[Guest guest]

Marie,

Are you off of the Cuprimine?? Are you on the AP?? What dose?

Donna

Ottawa, Canada

Scleroderma, Jan.95, AP Oct.97

(My Story) www3.sympatico.ca/mousepotatoes

rheumatic hi

>From: Mlf82938@...

>

>i guess its time to write this weather is up and down, my hands are getting

>worst, i do need some dr, names that you might think that can help with

>fingers they are half bent sore is it because dr dont want to operate

because

>of ra, scleroderma could use ans thanks marie

>

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