New member

Report post · January 5, 2010

Right now I have a cardiologist, electrophysiologist, neurologist, orthopedic

and now the rheumatologist. I try to have each doctor send the results to the

rest but it does get complicated. So what does LLMD stand for? Is anyone in this

group from CT? Maybe someone knows of a good doctor here.

Â

Thanks

From: Sara <srobinson@...>

Subject: Re: [ ] new member

Date: Monday, January 4, 2010, 10:36 PM

Â

Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it

when they see it. But most of them only know what a rheumatologist needs to

know, which is pretty limited. They are by no means specialists in treating the

disease -- for that, you need someone for whom Lyme is their first and only

specialty.

(Note that this criterion also lets out traditional infectious disease doctors,

who also have a very limited view of the disease.)

Lyme is multi-systemic, which means that any of these doctors is like one of the

blind men feeling the elephant. They only know about the part they're grasping.

LLMDs, on the other hand, see the whole elephant -- and that's why we're pretty

emphatic here that you need to get yourself in to see one, and soon.

Sara

Report post · January 5, 2010

You know when the doctor first told me that I tested positive for Lyme I thought

" no way " but after hearing your stories it sounds more and more likely. The

blood tests were forwarded to my cardiologist and he said that he doubts I have

lyme or lupus but thats not his area. They never foundÂ a cause of the heart

failure and I have alot ofÂ lyme related symptoms. Headaches, fatigue, post

nasal drip for about 1 year every day,Â insomnia, motion sickness (I can not be

in a car when someone else drives) POTS, cardiomyopathy,Â balance

problems,Â swollen glands in neck (only on left side though),joint pain, muscle

pain in legsÂ and you know how it goes the list goes on. The weirdest thing

lately is that I am super sensitive to smells. Do any of you have that problem?

Its like I am pregnant again, I am definetly not! lol The smell of coffee and

any kind of seafood makes me want to throw up.

Â

From: on <maryha@...>

Subject: Re: [ ] new member

Date: Tuesday, January 5, 2010, 4:51 AM

Â

Sara,

You have a wonderful way of explaining things, as usual! I wanted to second your

comment about the cardiac and POTS stuff occuring earlier in treatment. I also

have been in treatment for 16 months and my cardiac symptoms were all in the

first 3 months of treatment. I did relapse last August and for a couple months

the lightheadedness came back for a couple weeks but the tachycardia did not

return, thankfully. Its one thing to deal with all these Lyme symptoms but when

it starts messing with your heart its scary!

-

Re: [ ] new member

://.

Report post · January 5, 2010

Lyme-literate medical doctor. This is a special group of doctors who specialize

in treating chronic and late-stage Lyme.

With all the people you're seeing, it may be best to start keeping your own

records, with copies of all lab results and notes on every visit. Put it in a

binder and take it to your various appointments, so you can share information.

Odds are overwhelming that the cardiac, neurological, and joint issues will

resolve with good Lyme treatment, so quite a few of these specialists could well

fade to the background over the next 6-12 months once you get treatment started.

Lyme disease is named after Old Lyme, CT, where it was first identified in the

US. It's endemic in that state, so there are plenty of LLMDs to choose from.

Sara

On Jan 5, 2010, at 3:54 20PM, Chiaravalloti wrote:

> Right now I have a cardiologist, electrophysiologist, neurologist, orthopedic

and now the rheumatologist. I try to have each doctor send the results to the

rest but it does get complicated. So what does LLMD stand for? Is anyone in this

group from CT? Maybe someone knows of a good doctor here.

>

> Thanks

>

> From: Sara <srobinson@...>

> Subject: Re: [ ] new member

>

> Date: Monday, January 4, 2010, 10:36 PM

>

> Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it

when they see it. But most of them only know what a rheumatologist needs to

know, which is pretty limited. They are by no means specialists in treating the

disease -- for that, you need someone for whom Lyme is their first and only

specialty.

>

> (Note that this criterion also lets out traditional infectious disease

doctors, who also have a very limited view of the disease.)

>

> Lyme is multi-systemic, which means that any of these doctors is like one of

the blind men feeling the elephant. They only know about the part they're

grasping. LLMDs, on the other hand, see the whole elephant -- and that's why

we're pretty emphatic here that you need to get yourself in to see one, and

soon.

>

> Sara

>

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

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

Report post · January 6, 2010

, The motion sickness and smell sensitivity is very familiar to me. Before

I knew it was Lyme I had this for about 6 months along with a much too strong

gag reflex... Motion, certain food and, especially, chemical smells would set

me into a gagging fit and sometimes vomiting too. At the time I was still

riding my horse and I would often have to quickly hop off, gagging and doubled

over. I used to describe it to others like it was having morning sickness all

day. Such fun we Lymies have! However, I've been in treatment for 17 months

and have had very few of these problems since starting treatment.

-

Re: [ ] new member

You know when the doctor first told me that I tested positive for Lyme I

thought " no way " but after hearing your stories it sounds more and more likely.

The blood tests were forwarded to my cardiologist and he said that he doubts I

have lyme or lupus but thats not his area. They never found a cause of the heart

failure and I have alot of lyme related symptoms. Headaches, fatigue, post

nasal drip for about 1 year every day, insomnia, motion sickness (I can not be

in a car when someone else drives) POTS, cardiomyopathy, balance problems,

swollen glands in neck (only on left side though),joint pain, muscle pain in

legs and you know how it goes the list goes on. The weirdest thing lately is

that I am super sensitive to smells. Do any of you have that problem? Its like I

am pregnant again, I am definetly not! lol The smell of coffee and any kind of

seafood makes me want to throw up.

Report post · January 8, 2010

Hello all,

A big thank you to those who responded to my intro. Sorry, I went out of town

and didn't respond.

Went to the " Pain clinic " today. Well that was a joke. Wants me to attend 7

sessions of an informational group and getÂ cortisone shot. Can we just skip

the crap and give me the shot, please?

Surgery or no surgery... that is the question..... for right now I'll take the

shot and keep the oxy's coming........... if it hurts bad enough I'll let them

cut.

Has anybody here had the neck surgery? (If I asked that before, I apologize,

I've been away) Yes, they want to do the front... remove two disks and fuse the

vertabrae, then later go in and do the lamenectemy from the rear.... scares the

jesus out of me!

I only know one other person to have this procedure and she's still in a lot of

pain.

Alan

From: rinninwind@... <rinninwind@...>

Subject: Re: New Member

spinal problems

Date: Saturday, December 12, 2009, 3:50 PM

Â

Allan,

Hate to be the bearer of bad news, but the surgeon is most likely telling

you the truth. Do you recall if he used the term myolapathy? My husband

had 3 opinions before we finally believed what the Dr's were saying. When

the cervical spine is severely compressed, there is no other option than

surgery.

The good news is, an anterior ACDF isn't that bad of a surgery. Get more

opinions before getting the laminectomy. That surgery is more painful and

a couple Doctors said it was an " old fashioned " way of taking care of the

problem.

Report post · January 9, 2010

Did you get a copy of your MRI? Get on the internet and research and see for

yourself if it is more or less compressed than others who have avoided surgery

or who have had surgery. You can request a copy and see for yourself exactly how

severe the compression on your spinal cord is. I would get a copy for myself,

and get a second opinion. It was mentioned that this is not something to mess

around with, which is true, but it is also something that you should not rush

into. I read you went to a chiropractor? Did you go to a physical therapist? I

am surprised your surgeon did not recommend physical therapy before jumping

straight to surgery.

Once you have a fusion the chances of disks below and/or above the fusion area

will likely weaken and require more surgeries in the future. I waited until I

could not hardly use my left hand, my left arm muscles had weakened and I could

not lift my arm over my head prior to my cervical fusion. They went through the

front and all in all the surgery was not difficult to endure or recover

from(compared to lower back laminectomies I have had). That was in 2007, and now

the disk below my fusion has been giving me a lot of trouble and pain. Again, I

will wait as long as I possibly can to have any additional surgeries and I

ALWAYS get a copy of my MRI's even though my neurologist is more conservative on

surgery than a lot of them are.

Also, did I read where someone said they would be back at work and able to lift

things after one week? That is a bunch of horse (*^^. You WILL NOT and SHOULD

NOT lift thing and pull on things after one week. It takes time for a fusion to

fuse and if you don't allow it to heal there is no reason to even have the

surgery to start with!!

You can search this forum by typing cervical fusion and read experiences of

others who have also had this procedure.

Good luck to you and I hope should you go through with the surgery it will

brings you relief.

Report post · January 9, 2010

Hey, Alan.

I've only had the laminectomy/diskectomy (no fusion). It immediately solved the

nerve impingement but did nothing for my decade long pain. I was warned before

surgery that it might end up that way and appreciated the honesty, which kept my

expectations realistic.

I know a gal who's had two anterior fusions and her recovery seemed much shorter

than mine. She also recommends using cadaver bone if you are given the choice.

She self-donated the first time and said that part hurt a lot more than she

expected.

It seems like 7 " informational group " sessions would be counterintuitive with

people in enough pain that they seek out a pain clinic... why don't they offer

those sessions online, or in print out form? I always hate when I'm forced to

sit and learn at someone else's speed, feel like it's a waste of time. But I

haven't been to Pain Management yet, so maybe they all do that?

Best of luck,

>

> From: rinninwind@... <rinninwind@...>

> Subject: Re: New Member

> spinal problems

> Date: Saturday, December 12, 2009, 3:50 PM

>

> Â

>

> Allan,

>

> Hate to be the bearer of bad news, but the surgeon is most likely telling

>

> you the truth. Do you recall if he used the term myolapathy? My husband

>

> had 3 opinions before we finally believed what the Dr's were saying. When

>

> the cervical spine is severely compressed, there is no other option than

>

> surgery.

>

> The good news is, an anterior ACDF isn't that bad of a surgery. Get more

>

> opinions before getting the laminectomy. That surgery is more painful and

>

> a couple Doctors said it was an " old fashioned " way of taking care of the

>

> problem.

>

Report post · January 9, 2010

Thanks, Barb

I will search cervical fusion. Have not been to chiropractor. Has one helped

you?

Alan

From: Barb <ellijaygal@...>

Subject: Re: New Member

spinal problems

Date: Saturday, January 9, 2010, 7:15 AM