LLMD--is it worth it? Cost/benefit of Lyme treatment?

For everything that is related to Lyme and/or Lymeland, but doesn't fit in the other forums. Speak your mind, connect, ask help, etc.
Locked
User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Fri 6 Aug 2010 22:22

Cobwebby:

Spanky wrote:
"I remember laying on the coach and getting these, like shock-like convulsions, almost seizures...felt like you were being shot with electric current from head-to-toe. I mean, I don't want to get all melodramatic here, but I was thinking that if I didn't get some help soon...I didn't have a real positive outlook, at that point, in terms of the range of overall possible outcomes."
I experienced that same sensation and believed it to be Paresthesia.
I went through a couple of stages dealing with it. At first I was weirded out in a scared sort of way. Then I went into a " Man this is wild" reaction in a hippie sort of way.

Geez, that was some horrid, awful s**t...hard to describe what it felt like, except, you would get this awfully sick , queasy feeling along with it...(shudder)...ugh. No, this wasn't some minor tingling or numbness, though. (When I was in college, if you were in Psych 101, you had to do some guinea pig time as a test subject for grad students. They used electric shocks. That's just what this felt like...through the entire body. I mean, convulsions, seizures. Like you had grabbed hold of a live wire).

And see, I had no idea what was going on at the time, really. I was still undiagnosed.

Mostly, though, what I had looked very much like what I had seen of Parkinson's patients. Not like Michael J. Fox...more like Katherine Hepburn in her last years. That kind of repetitive, rocking rhythmic movement. (Check the alliteration, there).

I remember, I was at some friends' house and they noticed this...and I just laughed about it and told them if they changed the music to match my beat...it would look like I was just enjoying the music. I think I told them to play some Sam Cooke... :D

And like I say...I can time all of this because I have an exact date for the tick removal.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Cobwebby » Fri 6 Aug 2010 23:14

I have a Katherine Hepburn co-worker, her name is Sherry. She has been diagnosed with MS. Every single symptom she has fits Lyme Disease to a T. Of course my co-workers got real tired of my telling them I think they have Lyme Disease-just didn't want to hear it.

Half way through the year, I overheard Sherry tell someone that the doctor doesn't think she has MS-so more and more tests are being run. This woman is younger than me- but appears much older than I do. She takes a lot of time off.

Same goes for another co worker who is on the specialist merry go round, and extremely frustrated that the docs just can't seem to figure out what's wrong.

I have passed out literature, told them of my experience and that's about all I can do. All we can do is plant the seed, and then let them go on as they wish.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sat 7 Aug 2010 0:30

"Cobwebby":

Half way through the year, I overheard Sherry tell someone that the doctor doesn't think she has MS-so more and more tests are being run. This woman is younger than me- but appears much older than I do. She takes a lot of time off.
Yep. Lyme patients, though, think it is everywhere. Doctors think it is ...nowhere around here.

The lesson I took away from my whole ordeal is that the critical factor is simply awareness. Being alert to the possibility. Including Lyme on the radar screen of possible diagnoses.

But in my case, as I say, I don't blame anyone for the delay in diagnosis, because where I live, at that time, they probably shouldn't have suspected. (And I certainly didn't, either. I had managed to pinpoint the trouble to a specific timeframe. I was focused on when things went wrong and knew it was when I had this colonoscopy done. But I actually suspected improper sterilization rather that the tick they noticed and took off afterwards).

But when things start to go bad...recognizing how Lyme can 'present' may make a big difference. And not just for the patient, either.

I had to go through a lot of stuff to rule out other things, also, among them, Parkinson's, ALS, MS. Expensive tests and procedures. The costs to the healthcare system were not inconsequential.

And all those costs were run up... because no one simply knew enough to even suspect...

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Cobwebby » Sat 7 Aug 2010 5:23

Spanky:
But in my case, as I say, I don't blame anyone for the delay in diagnosis, because where I live, at that time, they probably shouldn't have suspected.

And yet- I think you were luckier than my two co-workers. It's 2010 in northeast MD, and there doesn't seem to be a GP in the state willing to think outside the box. On and On and On the tests go as the symptoms get worse and worse. Lyme Disease is a broadcast on the news every spring and MD has a fair share of LLMDs available to those who wish to go that route.

As I said- you were one lucky dude.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sat 7 Aug 2010 14:55

"Cobwebby":

As I said- you were one lucky dude.
Well, maybe, I suppose? "Lucky" is a relative term, I guess. I mean, compared to what?

See, me, I would say "lucky" would be never getting nailed with this junk in the first place.

You mean "lucky" because I couldn't see an "LLMD"? Now there's a thought...yeah, could be... :lol:


But you know, I sort of expected some fairly strong reactions to the suggestions in this topic.

But buried in there, also, I think, is a fairly positive and hopeful message...as bad as I think I was...I came out of it.

And remembering how bad it felt at times, that just didn't seem even remotely possible to me at the time.

So, I wish that if anyone is reading this that is just now in the midst of all of this...that they will consider that as well.

X-member
Posts: 4098
Joined: Mon 30 Jul 2007 18:18

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by X-member » Sat 7 Aug 2010 15:49

Spanky, you wrote:
So, I wish that if anyone is reading this that is just now in the midst of all of this...that they will consider that as well.
Are you a Dr?

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sat 7 Aug 2010 15:59

"Carina":

Are you a Dr?
Not a medical doctor. No. A JD. Juris doctorate. A lawyer. (Infinitely superior to an MD, actually. Sometimes you have to pull the MDs down from Mt. Olympus and show them they are not, in fact, gods, but mere mortals. We call this process a "deposition". They don't tend to have much of a sense of humor about these type of things).

I am just talking about my personal experiences.

Not to be taken as medical advice. (Or legal advice. Read at your own risk). :D

X-member
Posts: 4098
Joined: Mon 30 Jul 2007 18:18

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by X-member » Sat 7 Aug 2010 16:48

Your own interpretation of what you have experienced, maybe isn't correct?

And, I give you some help with what I ment with "Dr" :) :

http://en.wikipedia.org/wiki/Physician

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sat 7 Aug 2010 17:03

"Carina":
Your own interpretation of what you have experienced, maybe isn't correct?
Well, sure. But I would suggest to you that there is certainly limited usefulness in trying to argue my own perceptions of what happened in my own case.

Now, as I have said before, if anyone wants to tell me that I didn't have Lyme disease...PLEASE do so. Be my guest. But tell it to my doctors, as it wasn't me saying it. And unfortunately, because of the mathematics involved in the probabilities of three successive Lyme screens producing three positive results in a row...probably very unlikely that I wasn't at least exposed to Bb.
And, I give you some help with what I meant with "Dr" :) :

http://en.wikipedia.org/wiki/Physician
Right. I understood that.

No, again, I am NOT an MD. Not a 'dr' as you put it.

X-member
Posts: 4098
Joined: Mon 30 Jul 2007 18:18

Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by X-member » Sat 7 Aug 2010 18:22

Hello again Spanky!

I can not tell you what you suffer from! I have to believe in what you tell us.

But, lets say some other person with chronic Lyme (that have had Lyme 2 years before any treatment) have 10 months of "pretreatment", and then have the same "IDSA-treatment" that you have had, the might (I only say might) experience the same thing as you did.

But, if they didn't suffer from the "American" type of Lyme (BBss), and instead, suffer the most common borrelia type in chronic Lyme in Europe (B Afzelii), and they maybe have had it for more then 2 years before any treatment, they maybe don't have the same "success" as you had.

And, I don't think that "waiting för 10 years after treatment, to recover" is any success, at all.

What do you think happend during those 10 months of pretreament? Did your immune defence maybe improve a lot? Do you have a good immune defence now?

What did you suffer from during the ten years of "late recovery"? Some "auto immune" conditon?

Many questions, very few answers!

We only have your story!

Locked