New

[Guest guest]

Hi, Joanne,

Your symptoms may be CNS (central nervous system - brain & spinal cord), or they

may be peripheral (nerves outside the CNS). It's hard to know for sure.

I have read (don't remember where) that Lyme can get to the CNS within 12 hours

of a tick bite. So I would assume it is there, whether it is causing symptoms

or not.

I have not had carpal tunnel syndrome, but have had thoracic outlet syndrome

(which is frequently misdiagnosed as carpal tunnel), and now have adhesive

capsulitis. So, yes, that can certainly be a manifestation of Lyme disease.

Did anything happen in January to set it off? Illness or injury or steroids or

surgery or a big emotional event? Just curious. Mine was very, very mild until

I had surgery plus a steroid. Then Boom.

Best of luck with it. I hope you get in to see an LLMD soon.

D.

jojeanle1 <jojeanle1@...> wrote: ,

I live in Pennsylvania. And I am dilligently searching for a doc.

I'm currently on a waiting list for a couple around this area. Let

me ask you something, how do you know if its in your spinal fluid.

I think it is, because I get a stiff neck, and I have tingling

sensations on my face, my hands and feet tingle sometimes, and I get

stabbing and burning sensations all over my body.

Thanks for the advice on the sauna, I belong to the local Y, and Im

going to start going in the sauna an hour a day with the abx im on

until i can get to a llmd. I hope this does ramp up the effeciency

of the abx. Also, do you have carpel tunnel type symptoms, I do,

and I dont know if Im late stage disseminated, or chronic at this

point. MY symptoms started in January(with a vengence) But I dont

know how long I might of had it before than.

Thanks,

Joanne

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

Want to start your own business? Learn how on Small Business.

[Guest guest]

Joanne:

Where at in Pennsylvania? I live in Lebanon. I

have gone to an infectious disease doctor in

Mechanicsburg, he has a good history with Lyme

Patients and I have also worked with a

nutritionist in Dillsburg (they are about 7

minutes away from one another) and she has a

large clientele with Lyme.

If you want more information you can e-mail me @

dnb15@...

Blessings,

Donna

________________________________________________________________________________\

____

Sponsored Link

Online degrees - find the right program to advance your career.

www.nextag.com

[Guest guest]

it is in my opinion in your spine but dont worry just knock down the pests..also

get on a better dose 200 wont cure a bird..watch out for a herx from the

sauna...it is a killer even without antibiotics...

eric

jojeanle1 <jojeanle1@...> wrote:

,

I live in Pennsylvania. And I am dilligently searching for a doc.

I'm currently on a waiting list for a couple around this area. Let

me ask you something, how do you know if its in your spinal fluid.

I think it is, because I get a stiff neck, and I have tingling

sensations on my face, my hands and feet tingle sometimes, and I get

stabbing and burning sensations all over my body.

Thanks for the advice on the sauna, I belong to the local Y, and Im

going to start going in the sauna an hour a day with the abx im on

until i can get to a llmd. I hope this does ramp up the effeciency

of the abx. Also, do you have carpel tunnel type symptoms, I do,

and I dont know if Im late stage disseminated, or chronic at this

point. MY symptoms started in January(with a vengence) But I dont

know how long I might of had it before than.

Thanks,

Joanne

[Guest guest]

nancy,

Yeah, before all the weird symptoms hit I was on phentermine (stimulant) for

weight loss for about a month, I got off it cause my heart rate went up to 120

just sitting. I discontinued the med and went on Atkins, and thats when it all

blew up. My heart rate stayed elevated for 3 months, and I had palpatations, I

thought it was the drug or diet, but it was lyme comming in to full form, then

materializing throughout my body.

My deltoid muscles were so weak that when they put the tournaquett on to draw

blood, I screamed with pain, then he put me on doxy, within one day of being on

it, my delts calmed down, but they still bother me now and again. I knew right

there I had something that needed antibiotics.

Im taking the doxy now, and Im noticing alot of muscle twitches in my calves,

but I didnt have the herx reaction like I did when I first started doxy

initially.

what is adhesive capulitis?, and thoratic syndrome??

Thanks,

Joanne

DeMarco <ponyrubs@...> wrote:

Hi, Joanne,

Your symptoms may be CNS (central nervous system - brain & spinal cord), or they

may be peripheral (nerves outside the CNS). It's hard to know for sure.

I have read (don't remember where) that Lyme can get to the CNS within 12 hours

of a tick bite. So I would assume it is there, whether it is causing symptoms or

not.

I have not had carpal tunnel syndrome, but have had thoracic outlet syndrome

(which is frequently misdiagnosed as carpal tunnel), and now have adhesive

capsulitis. So, yes, that can certainly be a manifestation of Lyme disease.

Did anything happen in January to set it off? Illness or injury or steroids or

surgery or a big emotional event? Just curious. Mine was very, very mild until I

had surgery plus a steroid. Then Boom.

Best of luck with it. I hope you get in to see an LLMD soon.

D.

[Guest guest]

Donna,

Im in Lancaster area, so not to far from you. Do you have the number of the

infectious disease doc? Perhaps his waiting list isnt as long. Thank you so

much

Joanne

Bill Ritter <dnb15@...> wrote:

Joanne:

Where at in Pennsylvania? I live in Lebanon. I

have gone to an infectious disease doctor in

Mechanicsburg, he has a good history with Lyme

Patients and I have also worked with a

nutritionist in Dillsburg (they are about 7

minutes away from one another) and she has a

large clientele with Lyme.

If you want more information you can e-mail me @

dnb15@...

Blessings,

Donna

[Guest guest]

Hi, Joanne,

I'm sorry you're having such a rough time.

Thoracic outlet syndrome is when the blood supply and/or the nerve supply to the

arm and hands is partially blocked. You get a painful shoulder with limited

movement, pain and tingling down the arm, possibly into the hands & fingers. It

can be cold, numb, etc, depending on what is blocked where. Sometimes you get

shooting, stabbing pains.

Adhesive Capsulitis is when the actual joint capsule gets shrunken and fibrotic,

and forms adhesions to the bone. This can be excruciatingly painful.

Both seem related to Lyme. At the last hearing for Dr , I met quite a few

people who had one or the other or both. But both can be treated conventionally

with PT, or by a very good massage therapist.

Hang in there,

D.

Joanne mahan <jojeanle1@...> wrote: nancy,

Yeah, before all the weird symptoms hit I was on phentermine (stimulant) for

weight loss for about a month, I got off it cause my heart rate went up to 120

just sitting. I discontinued the med and went on Atkins, and thats when it all

blew up. My heart rate stayed elevated for 3 months, and I had palpatations, I

thought it was the drug or diet, but it was lyme comming in to full form, then

materializing throughout my body.

My deltoid muscles were so weak that when they put the tournaquett on to draw

blood, I screamed with pain, then he put me on doxy, within one day of being on

it, my delts calmed down, but they still bother me now and again. I knew right

there I had something that needed antibiotics.

Im taking the doxy now, and Im noticing alot of muscle twitches in my calves,

but I didnt have the herx reaction like I did when I first started doxy

initially.

what is adhesive capulitis?, and thoratic syndrome??

Thanks,

Joanne

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

Everyone is raving about the all-new beta.

[Guest guest]

,

Have you or anyone else heard of Malerone (sp?) for Babesia? I am on 200mgs Doxi

orally now, due to the insurance stopping my iv meds...and now I am jumping thru

a few hoops to get Malerone approved for Babesia. I had been on abx for 2 and a

half years when they tested me for Babesia so it came back negative, so I don't

have that leg to stand on for the insurance company. Darn it all! I wish doctors

could treat their patients instead of people behind a desk pushing a pencil!

Can someone help me?

Jackie in NH

Re: [ ] new

Hi, Joanne,

I'm sorry you're having such a rough time.

Thoracic outlet syndrome is when the blood supply and/or the nerve supply to

the arm and hands is partially blocked. You get a painful shoulder with limited

movement, pain and tingling down the arm, possibly into the hands & fingers. It

can be cold, numb, etc, depending on what is blocked where. Sometimes you get

shooting, stabbing pains.

Adhesive Capsulitis is when the actual joint capsule gets shrunken and

fibrotic, and forms adhesions to the bone. This can be excruciatingly painful.

Both seem related to Lyme. At the last hearing for Dr , I met quite a few

people who had one or the other or both. But both can be treated conventionally

with PT, or by a very good massage therapist.

Hang in there,

D.

[Guest guest]

Hi, Jacqui,

I haven't heard about it, but it looks like it is a combination of the drug in

Mepron (Atovaquone), plus Proguanil. I am on Mepron - no side effects, but so

far not much gain. I don't know if I have babs or not - like you, negative test

after months of antibiotics. Others have had good results with it.

The Proquanil is also an anti-malarial. It prevents the babs in the red blood

cells from reproducing.

Doing a quick search, it looks like Malarone is much less expensive than Mepron.

Weird.

D.

Jacqui <dragonfly2@...> wrote: ,

Have you or anyone else heard of Malerone (sp?) for Babesia? I am on 200mgs Doxi

orally now, due to the insurance stopping my iv meds...and now I am jumping thru

a few hoops to get Malerone approved for Babesia. I had been on abx for 2 and a

half years when they tested me for Babesia so it came back negative, so I don't

have that leg to stand on for the insurance company. Darn it all! I wish doctors

could treat their patients instead of people behind a desk pushing a pencil!

Can someone help me?

Jackie in NH

Re: [ ] new

Hi, Joanne,

I'm sorry you're having such a rough time.

Thoracic outlet syndrome is when the blood supply and/or the nerve supply to

the arm and hands is partially blocked. You get a painful shoulder with limited

movement, pain and tingling down the arm, possibly into the hands & fingers. It

can be cold, numb, etc, depending on what is blocked where. Sometimes you get

shooting, stabbing pains.

Adhesive Capsulitis is when the actual joint capsule gets shrunken and

fibrotic, and forms adhesions to the bone. This can be excruciatingly painful.

Both seem related to Lyme. At the last hearing for Dr , I met quite a few

people who had one or the other or both. But both can be treated conventionally

with PT, or by a very good massage therapist.

Hang in there,

D.

For free up to date information about Lyme disease and the known

co-infections delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

Hi ,

The reason they are putting me on the Mepron is becuz I have the sweats and the

pains in my bones. Also the tremors. None of that cleared with a 10 week period

of IV Doxi. Did you experience any of the sweats and chills and pains in your

bones? Mainly my legs, feet and hands...No side effects from the Mepron at all?

No vomitting and stuff? How does it taste? I am hearing some gross things about

it...can't wait to hear from you. Thanks.

Jackie

Re: [ ] new

Hi, Jacqui,

I haven't heard about it, but it looks like it is a combination of the drug in

Mepron (Atovaquone), plus Proguanil. I am on Mepron - no side effects, but so

far not much gain. I don't know if I have babs or not - like you, negative test

after months of antibiotics. Others have had good results with it.

The Proquanil is also an anti-malarial. It prevents the babs in the red blood

cells from reproducing.

Doing a quick search, it looks like Malarone is much less expensive than

Mepron. Weird.

D.

[Guest guest]

Hi, Jacqui,

I have sweats and mild tremors, no bone pain. The stuff I have is flavored, and

not at all unpleasant to take. It comes in a bottle. I've been told it also

comes in foil packets, and they taste terrible. No nausea. It's really pretty

easy, as meds go.

At first I had it with Zithromax. The Mepron must be taken with a well-balanced

meal, and the Zithromax must be taken on an empty stomach. So I left the

Zithromax in the bathroom with a glass of water, and took it in the middle of

the night when I woke up to pee. The Mepron, I took with breakfast and dinner.

Now I have it with doxy, and I take both with breakfast & dinner. The doxy will

make me nauseous if I'm not careful to eat a lot, especially if I drive. So I

have to plan the timing more carefully and stuff myself.

G'luck with it. I hope it helps.

D.

Jacqui <dragonfly2@...> wrote: Hi ,

The reason they are putting me on the Mepron is becuz I have the sweats and the

pains in my bones. Also the tremors. None of that cleared with a 10 week period

of IV Doxi. Did you experience any of the sweats and chills and pains in your

bones? Mainly my legs, feet and hands...No side effects from the Mepron at all?

No vomitting and stuff? How does it taste? I am hearing some gross things about

it...can't wait to hear from you. Thanks.

Jackie

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

Check out the all-new beta - Fire up a more powerful email and get

things done faster.

[Guest guest]

Hey! Same as me! I like your ideas about taking it with meals together...didn't

you hear that taking Doxi reduces the effectiveness of the Mepron? I did...I

asked the pharmacist and he looked it up and said no...hope not! How much of

each do you take?

Thanks so much for getting back to me.

Jackie

Re: [ ] new

Hi, Jacqui,

I have sweats and mild tremors, no bone pain. The stuff I have is flavored,

and not at all unpleasant to take. It comes in a bottle. I've been told it also

comes in foil packets, and they taste terrible. No nausea. It's really pretty

easy, as meds go.

At first I had it with Zithromax. The Mepron must be taken with a

well-balanced meal, and the Zithromax must be taken on an empty stomach. So I

left the Zithromax in the bathroom with a glass of water, and took it in the

middle of the night when I woke up to pee. The Mepron, I took with breakfast and

dinner.

Now I have it with doxy, and I take both with breakfast & dinner. The doxy

will make me nauseous if I'm not careful to eat a lot, especially if I drive. So

I have to plan the timing more carefully and stuff myself.

G'luck with it. I hope it helps.

D.

[Guest guest]

Hi, Jacqui,

No I hadn't heard that, but I did find a reference here:

http://www.drugs.com/cdi/mepron.html , and it looks like it is true. *sigh* My

LLMD said it was OK when I asked about any interactions. My pharmacist was very

up front - he said he was unfamiliar with Mepron, and could not help me beyond

the package insert. I asked here, and no one knew of a problem.

I haven't been able to reach my LLMD by phone, so I think I will refill my

prescription for Zithromax, which I have not taken for two months. I'll go back

on that with the mepron until I can speak to him. No point wasting yet another

bottle of $$Mepron$$.

Thank you very much for mentioning the interaction.

OK, amount... I think a tsp of Mepron is 750 mg? And I take it twice daily.

The doxy has been 400 mg/day - 200 mg AM and PM. Before that I took the Mepron

with Azithromycin, one 500 mg pill daily. I felt just awful on that combo, but

I think it was largely because I was doing the maximum dosage of Buhner's core

protocol at the same time, and it was just too much for me. My liver enzymes

started to rise, I was weak and dizzy with visual disturbances... so I quit

everything, then started the doxy and mepron the next week.

I have since read that Burrascano says his patients who try to do the herbal

protocol along with antibiotics tend to have liver issues, so I think that was

probably the problem - not the azithromycin. Guess I'll find out.

Life as a lab rat - endlessly entertaining. Thanks again,

D.

Jacqui <dragonfly2@...> wrote: Hey! Same as me! I like your ideas about

taking it with meals together...didn't you hear that taking Doxi reduces the

effectiveness of the Mepron? I did...I asked the pharmacist and he looked it up

and said no...hope not! How much of each do you take?

Thanks so much for getting back to me.

Jackie

Re: [ ] new

Hi, Jacqui,

I have sweats and mild tremors, no bone pain. The stuff I have is flavored,

and not at all unpleasant to take. It comes in a bottle. I've been told it also

comes in foil packets, and they taste terrible. No nausea. It's really pretty

easy, as meds go.

At first I had it with Zithromax. The Mepron must be taken with a

well-balanced meal, and the Zithromax must be taken on an empty stomach. So I

left the Zithromax in the bathroom with a glass of water, and took it in the

middle of the night when I woke up to pee. The Mepron, I took with breakfast and

dinner.

Now I have it with doxy, and I take both with breakfast & dinner. The doxy

will make me nauseous if I'm not careful to eat a lot, especially if I drive. So

I have to plan the timing more carefully and stuff myself.

G'luck with it. I hope it helps.

D.

For free up to date information about Lyme disease and the known

co-infections delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

You will find many friends here.

and if you read the past posts most of your questions should be answered.

Joint Replacement/

Aussie Margaret

RTHR 1990 revised 2004

new

|I am going to get a hip replacement soon due to leg perthes issues as a

| child

| scared

| concerned

| hoping to find friends

|

|

Send instant messages to your online friends http://au.messenger.

[Guest guest]

oh tammy don't be scared - I had a total hip replacement just over 3 weeks ago and my pain is less than what it was before. I'm back driving, I walk my dog a few times a day around the field, and my overall opinion is that it was worth doing. I only wished I had it done years ago. You'll do great, get your muscles in good order now before the op and good luck. There are lots on this list that will cheer you on.

ann

new

I am going to get a hip replacement soon due to leg perthes issues as a childscaredconcerned hoping to find friends

[Guest guest]

Tammy, you'll do great! I'm saying now what everyone I

talked to said before my operation: I don't know why

I waited so long! My physical therapy is lasting a bit

longer than the average because I've been limping and

in pain for more than four years. I'm still getting

used to walking without pain and not feeling like

someone is stabbing me in the hip with an ice pick! I

feel like a new person--really--and I'll bet you will

too. --Arthur

--- Ann <katlady@...> wrote:

> oh tammy don't be scared - I had a total hip

> replacement just over 3 weeks ago and my pain is

> less than what it was before. I'm back driving, I

> walk my dog a few times a day around the field, and

> my overall opinion is that it was worth doing. I

> only wished I had it done years ago. You'll do

> great, get your muscles in good order now before the

> op and good luck. There are lots on this list that

> will cheer you on.

> ann

>

> new

>

>

> I am going to get a hip replacement soon due to

> leg perthes issues as a

> child

> scared

> concerned

> hoping to find friends

>

>

>

>

Arthur in Pennsylvania

LTHR November 10, 2006

__________________________________________________

[Guest guest]

Tammy: I responded to your note by way of another

response, so I'll repeat it here for you:

You'll do great! I'm saying now what everyone I

talked to said before my operation: I don't know why

I waited so long! My physical therapy is lasting a bit

longer than the average because I've been limping and

in pain for more than four years. I'm still getting

used to walking without pain and not feeling like

someone is stabbing me in the hip with an ice pick! I

feel like a new person--really--and I'll bet you will

too. --Arthur

--- Tammy <tfinden@...> wrote:

> I am going to get a hip replacement soon due to leg

> perthes issues as a

> child

> scared

> concerned

> hoping to find friends

>

>

Arthur in Pennsylvania

LTHR November 10, 2006

__________________________________________________

[Guest guest]

Welcome to the site. Lot of great people to help you out.Shirley new

I am going to get a hip replacement soon due to leg perthes issues as a

child

scared

concerned

hoping to find friends

__________________________________________________

[Guest guest]

Tammy, Last April when I was told I was out of opitons and had to start having joints replaced I sat down and bawled like a baby. I thought I had a few years yet. I was afraid also. I chose to begin with the knees and had both replaced at the same time. I won't say it hasn't been rough, but my surgeon said the hip surgeries will be much easier. Just this week I feel a new me emerging. I'm so glad I had it done. You will find much good advice and a wealth of empathy at this site. I didn't find it

until I came looking after surgery when I had unrealistic expectations for recovery. I'm still learning new things at this site that help me. The more you learn, the more confident and comfortable you will be about your surgery. I wish you the very best. Warm regards, Donna Ann <katlady@...> wrote: oh tammy don't be scared - I had a total hip replacement just over 3 weeks ago and my pain is less than what it was before. I'm back driving, I walk my dog a few times a day around the field, and my overall opinion is that it was worth doing. I only wished I had it done years ago. You'll do great, get your muscles in good order now before the op and good luck. There are lots on this list that will cheer you on. ann new I am going to get a hip replacement soon due to leg perthes issues as a childscaredconcerned hoping to find friends __________________________________________________

[Guest guest]

Hi Donna

It is so great to hear you are improving again (after going through a tough patch). It's important to hear stories like yours, where the path to recovery has not been smooth. From everything I've read, recovering from having your hips replaced should be (relatively) somewhat easier than the knees

in NZ (post-THR, 6 weeks ago tommorrow)

-----Original Message-----From: Joint Replacement [mailto:Joint Replacement ]On Behalf Of Donna HartSent: Sunday, 7 January 2007 4:00 p.m.Joint Replacement Subject: Re: new

Tammy,

Last April when I was told I was out of opitons and had to start having joints replaced I sat down and bawled like a baby. I thought I had a few years yet. I was afraid also. I chose to begin with the knees and had both replaced at the same time. I won't say it hasn't been rough, but my surgeon said the hip surgeries will be much easier.

Just this week I feel a new me emerging. I'm so glad I had it done.

You will find much good advice and a wealth of empathy at this site. I didn't find it until I came looking after surgery when I had unrealistic expectations for recovery. I'm still learning new things at this site that help me. The more you learn, the more confident and comfortable you will be about your surgery.

I wish you the very best.

Warm regards,

Donna

[Guest guest]

Hi Tammy, I just wanted to welcome you to this group and everyone is very nice in this group :-) Just feel free to asked questions and we will answer the best we know how ? Well you take care and have a nice day:-) Love SusieTammy <tfinden@...> wrote: I am going to get a hip replacement soon due to leg perthes issues as a childscaredconcerned hoping to find friends

[Guest guest]

Thanks much, . Slowly but surely, I'm getting there. Absolutely no regrets. So good to have you back on these pages after your holiday! :-) Harnett <wjkh@...> wrote: Hi Donna It is so great to hear you are improving again

(after going through a tough patch). It's important to hear stories like yours, where the path to recovery has not been smooth. From everything I've read, recovering from having your hips replaced should be (relatively) somewhat easier than the knees in NZ (post-THR, 6 weeks ago tommorrow) -----Original Message-----From: Joint Replacement [mailto:Joint Replacement ]On Behalf Of Donna HartSent: Sunday, 7 January 2007 4:00 p.m.Joint Replacement Subject: Re:

new Tammy, Last April when I was told I was out of opitons and had to start having joints replaced I sat down and bawled like a baby. I thought I had a few years yet. I was afraid also. I chose to begin with the knees and had both replaced at the same time. I won't say it hasn't been rough, but my surgeon said the hip surgeries will be much easier. Just this week I feel a new me emerging. I'm so glad I had it done. You will find much good advice and a wealth of empathy at

this site. I didn't find it until I came looking after surgery when I had unrealistic expectations for recovery. I'm still learning new things at this site that help me. The more you learn, the more confident and comfortable you will be about your surgery. I wish you the very best. Warm regards, Donna __________________________________________________

[Guest guest]

Hi Tammy ... welcome to this group ... there is great support here.

Glad you feel free to share your feelings. I, too, was scared about the

replacement and I am anxious about the next one. But I know how much

progress I made with the first surgery and am looking forward to being

able to walk again -- even if it is with a cane (I currently use a

walker - very limited steps).

Hang in there... Jackie

[Guest guest]

,

Mine started at 29 yrs old. I have been an athlete since I as

young. I was on a golf scholarship in college. To be told you have

arthritis is pretty awful. It took a long time to be diagnosed. I

got with a good rheumy and good therapy and reached remission for

about 5 years.....no pain, drugs or doctors. Now I am going through

it again. I just built a new home on a beautiful golf course. We

moved in September and I have not been able to play since.

I don't know if it was tougher the first time(because I really

thought I wasn't going to make it) or the second time, because I am

growing impatient and I know that remission should be coming

soon....or is it? That what is making this bout so tough.

Try to find a good doctor that has experience with this disease. It

takes time, but it will happen. Good luck!

Lance

[Guest guest]

Welcome

I was 28 when i was diagnosed with Reactive Arthritis (I'm

41 now) and it was such a shock as I'd been very healthy up

to then. This is a great group, so ask any questions you

like

(ReA, on sulphasalazine, methotrexatrate and currently

in remission)

[Guest guest]

thanks for the kind words here is my update

I found out that the doctor that was going to do my surgery was not

going to do minimial invasive approach and researched and found a new

doctor that does my new surgery date is Feb 28....

I am very worried about a lot of issue this doc says I can remain

awake and even watch the procedure not liking that idea

anyone awake during the THR they had?

>

> > I am going to get a hip replacement soon due to leg

> > perthes issues as a

> > child

> > scared

> > concerned

> > hoping to find friends

> >

> >

>

>

> Arthur in Pennsylvania

> LTHR November 10, 2006

>

> __________________________________________________

>