Re: 18 Years worth of Lyme and still going!!

[Guest guest]

Rich,

What kind of treatment are you receiving for the Lyme?

I have had it for about 15 years...I have many of the

symptoms you have. I am now seeing a new Dr. and am

hopeful that this treatment will work. I have been on

Iv 3 times and oral antibiotics many times.

Good luck,

Kim

--- ih8562000 <richard@...> wrote:

> Hi,

> I have been suffering through lyme for 18 years and

> have started to

> write down some of the things that I have been

> experiencing with it.

> I don't have many moments of being able to do this

> so I thought I

> would share it with you and maybe you can see that

> some of the

> things you are going through, well you aren't alone

> in your pain.

> I live in upstate NY on the Ma. and Ct. boarders

> south of Albany.

> In Columbia county and there are no support groups

> here at all.

> I started a web group for folks in my area but none

> have joined yet.

> But anyway, here is what I wrote down so far. I

> really hope it helps

> some of you to see some of the things that you are

> going through

> through the eyes of someone who has had it for a

> longer period of

> time.

> These are the problems I have had over the course of

> my 18 years of

> battling Lyme disease.

> They are in no specific order, only the way I can

> list them from

> memory at this point.

>

> Neurological symptoms that have been experienced.

>

> Short-term memory loss :

>

> Short-term memory loss is a persistent problem.

> This includes numbers, names, places, and recent

> things that have

> happened.

> Examples of this occur in everyday tasks.

> Remembering a phone number or a friend's name and

> other things like

> this are very difficult.

>

> Mini Strokes :

>

> Mini stroke like episodes are happening on a weekly

> to monthly basis.

> The frequencies of the strokes and the time that

> they occur have no

> specifics with time and place, diet or stress. The

> symptoms that are

> experienced when they happen are the following.

> Loss of vision in the right eye followed by a very

> intense headache

> that has been localized to the right front side of

> the head with a

> pulsation involved. This is followed by a loss of

> vision in the

> right eye and or blurry vision in both eyes. There

> is a lack of

> lucidity or " zoning out " . The feeling of numbness

> and tingling on

> the right side that includes the face, arm and hand,

> leg and foot

> accompany this along with slurred speech. Then a

> very tired feeling

> and chills

> start the end of the episodes. The time that each

> event lasts varies

> and cannot be compared but in symptomology only.

>

> Other day-to-day symptoms are:

>

> Slurred speech is on a daily basis but there are

> days when it calms

> down. When trying to talk, it sometimes is very hard

> to get a word

> out without sounding like a car with a bad battery

> trying to start.

> Parkinson's like episodes manly with my right hand

> seem to happen 3

> to 4 times a week. Trying to keep both eyes open at

> various points

> in time can be very difficult.

> I have had a light sensitivity problem and it

> includes sensory

> overloads. I cannot read well because all of the

> text seems to run

> together and when watching tv or objects, they seem

> to be coming at

> me and I have to close my eyes for relief.

> There are more problems than this but these are what

> I remember

> right now.

>

> Body Pains

>

> Constant body pain is a major problem.

> The scale of the pain on the 1 to 10 scales is above

> the ten range

> on a daily basis.

> The pain is in both hips, both knees which makes

> walking or sitting

> very hard to do.

> The pain is a constant throbbing ache with the

> occasional shooting

> pains.

> There is extreme difficulty in the lower lumbar area

> of the back,

> which is compounded by degenerative disc disease.

> Problems are in

> the neck area on both sides going into the shoulders

> and head. This

> mainly happens on the right side. The right and left

> hands ache

> without relief. This pain goes into the wrists and

> includes carpel

> tunnel syndrome. I have also been having a great

> deal of chest pain.

> This includes tightness in the left side of my chest

> and feels like

> my heart. There are also episodes of it hurting when

> trying to

> breathe in like my chest will not expand because the

> muscles have

> all hardened up. This causes shallow breathing until

> the pain passes.

>

> Other problems that are going on

>

> Depression has been a great problem. Not only having

> to deal with

> the everyday thing that I am going through but the

> things that it

> has done to me and the quality of my life now which

> is almost non

> existent. Dealing with the fact that I can no longer

> comprehend

> things going on around me and being able to do the

> most simple of

> tasks have left me with the feelings of being

> totally useless. Not

> being able to work and having my career being taken

> away from me by

> this disease has been very hard to cope with. The

> fact that I cannot

> do things for and with my wife and son has also been

> very hard to

> deal with. Between these factors and the constant

> pain and loss of

> my physical and mental well being has left me with

> suicidal feelings

> at times.

> Although I would never act on my suicidal feelings,

> they are there

> and very real.

> After being on anti-depressants, I thought I would

> notice some

> change, but it has not happened. I did notice

> however that I do not

> react to things as badly as I have before the

> medication. The

> current medication I am on now is Prozac 45mg per

> day. My pain

> medication currently is MS Contin 30mg twice daily.

> The other pain

> medication used for breakthrough is Vicodin 10-500.

> The combination

> of these to pain meds have not given me any relief

> and the pain is

> getting worse. For sleeping I take 1600mg of

> Neurontin and 50mg of

> Trazadone at bed time. These have helped me a great

> deal with

> getting sleep. I also use Lidoderm patches with very

> little help. I

> have yet to find a good pain relief drug to help me

> cope with the

> amount of pain that I am feeling on a constant

> basis. I have been on

> IV Rocephin for treatment of the Lyme and have

> noticed some changes

> but after only 1 month, the changes are very little.

> I have a

> Groshong cathider installed in my chest. On a recent

> visit to the

> emergency room for chest and body pain I was given

> Delauded through

> the cathider with gave me quite a bit of relief but

> only for about

> an hour. It was nice to have this brief window of

> pain relief but it

> only put the pain in the background and I did have

> a great amount

> of pain when trying to move.

> The only way I have some relief is with sleep and

> laying in bed.

> This is not a good way to live ones life, but then

> Lyme Disease is

> not a good disease to have!

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hi,

I have finally founf a llmd and a specialist in my area.

Dr. Bock. I am currently on Rocephin IV through a grohon cath

in my chest. I am finally starting to feel hopeful by now have a

good gp that is working with Dr. Bock to get some results.

Like many of you, I have had my fill of doctors and there have been

alot of them. I have been on doxy, cipro and others I can't remember.

I am not sure of the term antimalarial though. If I understand the

word, does it mean malaria type drugs. If so, I have never been on

any or told by the dr. that I need to be on them yet. It's been a

very hard and long road so far and from what I am being told, there

is the possibility that I may never recover from it. If I do have

any improvement of symptoms it may be very small. But at this point,

small I will take.

Rich

> do you have a lyme literate doctor? how long have you

> been treated?what antibiotics? what antimalarial

> drugs? eric

>

[Guest guest]

Rich,

Thanks for sharing your story with us.

Beth

[ ] 18 Years worth of Lyme and still going!!

Hi,

I have been suffering through lyme for 18 years and have started to

write down some of the things that I have been experiencing with it.

I don't have many moments of being able to do this so I thought I

would share it with you and maybe you can see that some of the

things you are going through, well you aren't alone in your pain.

I live in upstate NY on the Ma. and Ct. boarders south of Albany.

In Columbia county and there are no support groups here at all.

I started a web group for folks in my area but none have joined yet.

But anyway, here is what I wrote down so far. I really hope it helps

some of you to see some of the things that you are going through

through the eyes of someone who has had it for a longer period of

time.

These are the problems I have had over the course of my 18 years of

battling Lyme disease.

They are in no specific order, only the way I can list them from

memory at this point.

Neurological symptoms that have been experienced.

Short-term memory loss :

Short-term memory loss is a persistent problem.

This includes numbers, names, places, and recent things that have

happened.

Examples of this occur in everyday tasks.

Remembering a phone number or a friend's name and other things like

this are very difficult.

Mini Strokes :

Mini stroke like episodes are happening on a weekly to monthly basis.

The frequencies of the strokes and the time that they occur have no

specifics with time and place, diet or stress. The symptoms that are

experienced when they happen are the following.

Loss of vision in the right eye followed by a very intense headache

that has been localized to the right front side of the head with a

pulsation involved. This is followed by a loss of vision in the

right eye and or blurry vision in both eyes. There is a lack of

lucidity or " zoning out " . The feeling of numbness and tingling on

the right side that includes the face, arm and hand, leg and foot

accompany this along with slurred speech. Then a very tired feeling

and chills

start the end of the episodes. The time that each event lasts varies

and cannot be compared but in symptomology only.

Other day-to-day symptoms are:

Slurred speech is on a daily basis but there are days when it calms

down. When trying to talk, it sometimes is very hard to get a word

out without sounding like a car with a bad battery trying to start.

Parkinson's like episodes manly with my right hand seem to happen 3

to 4 times a week. Trying to keep both eyes open at various points

in time can be very difficult.

I have had a light sensitivity problem and it includes sensory

overloads. I cannot read well because all of the text seems to run

together and when watching tv or objects, they seem to be coming at

me and I have to close my eyes for relief.

There are more problems than this but these are what I remember

right now.

Body Pains

Constant body pain is a major problem.

The scale of the pain on the 1 to 10 scales is above the ten range

on a daily basis.

The pain is in both hips, both knees which makes walking or sitting

very hard to do.

The pain is a constant throbbing ache with the occasional shooting

pains.

There is extreme difficulty in the lower lumbar area of the back,

which is compounded by degenerative disc disease. Problems are in

the neck area on both sides going into the shoulders and head. This

mainly happens on the right side. The right and left hands ache

without relief. This pain goes into the wrists and includes carpel

tunnel syndrome. I have also been having a great deal of chest pain.

This includes tightness in the left side of my chest and feels like

my heart. There are also episodes of it hurting when trying to

breathe in like my chest will not expand because the muscles have

all hardened up. This causes shallow breathing until the pain passes.

Other problems that are going on

Depression has been a great problem. Not only having to deal with

the everyday thing that I am going through but the things that it

has done to me and the quality of my life now which is almost non

existent. Dealing with the fact that I can no longer comprehend

things going on around me and being able to do the most simple of

tasks have left me with the feelings of being totally useless. Not

being able to work and having my career being taken away from me by

this disease has been very hard to cope with. The fact that I cannot

do things for and with my wife and son has also been very hard to

deal with. Between these factors and the constant pain and loss of

my physical and mental well being has left me with suicidal feelings

at times.

Although I would never act on my suicidal feelings, they are there

and very real.

After being on anti-depressants, I thought I would notice some

change, but it has not happened. I did notice however that I do not

react to things as badly as I have before the medication. The

current medication I am on now is Prozac 45mg per day. My pain

medication currently is MS Contin 30mg twice daily. The other pain

medication used for breakthrough is Vicodin 10-500. The combination

of these to pain meds have not given me any relief and the pain is

getting worse. For sleeping I take 1600mg of Neurontin and 50mg of

Trazadone at bed time. These have helped me a great deal with

getting sleep. I also use Lidoderm patches with very little help. I

have yet to find a good pain relief drug to help me cope with the

amount of pain that I am feeling on a constant basis. I have been on

IV Rocephin for treatment of the Lyme and have noticed some changes

but after only 1 month, the changes are very little. I have a

Groshong cathider installed in my chest. On a recent visit to the

emergency room for chest and body pain I was given Delauded through

the cathider with gave me quite a bit of relief but only for about

an hour. It was nice to have this brief window of pain relief but it

only put the pain in the background and I did have a great amount

of pain when trying to move.

The only way I have some relief is with sleep and laying in bed.

This is not a good way to live ones life, but then Lyme Disease is

not a good disease to have!

Thanks for listening,

Rich

[Guest guest]

Hello , I hope you dont mind me butting in. I feel such a lot of sympathy

for your symptoms and the way they make you feel mentally. Sometimes I just

think that everything must end someday, one way or another. I have begun to use

a parasite zapper as I cant take antibiotics. You may know all about them but I

thought I would mention it just in case you hadnt. You will find out about them

on the internet You could use it alongside the medication. Val

Re: [ ] 18 Years worth of Lyme and still going!!

do you have a lyme literate doctor? how long have you

been treated?what antibiotics? what antimalarial

drugs? eric