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

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

Post by Spanky » Tue 27 Jul 2010 19:01

"Cobwebby":

What is gone gone gone- for which I am most thankful is what I call the Alzheimer Effect of Lyme Disease.
The scariest aspect for me. I do not think that issue would have been addressed effectively if not for an LLMD. That alone is priceless.

Well, I am really not trying to argue this with you, here, Cobby (and I certainly do NOT know)...but what I am saying is that may only be a perception that you have...and an incorrect one, at that.

Steere wrote a piece (2001, I think) for the NEJM and if I remember right, basically suggested that even untreated cases would eventually resolve. And everyone hooted and snickered about that one.

But look...IF what is going on is really some sort of hyper-reaction of the body to the initial infection...then it seems to me to be within reason that you could have all the symptoms we are talking about and not have an active infectious process going on. Could Bb survive? Sure, I guess, why not? But that doesn't mean that any surviving Bb is capable of driving symptoms.

And the important thing, I think...from a patient perspective...is that IF that is true...then during the phase when the body's response is calming down...

...WHATEVER you do, you name it...is going to LOOK like it is helping. Whatever you do.

That's why we only rely on blinded, controlled studies...so that we can exclude the false perceptions.

Yeah, I had my time with the "brain fog", too. I had a neuro-psych exam done and it was depressing. I was hospitalized for five days during the period when I was undiagnosed. My GI system seemed to have just shut down. I had joint pain, loads of heart trouble...central nervous stuff so bad that I was twice tested for ALS type nerve conduction stuff. (That's fun). My right eye is, I think, probably permanently weaker as a result. Still got the floaters.

It would be quicker and shorter to name what it didn't influence at some point...

...and what I am telling you is that all of that is now better.

Including the heart. I seem to be fine.

Without loads and loads of iv antibiotics. Never even had one iv. I don't really understand what it is that people are talking about.

But like I said...the important thing is to keep an open mind. And although I probably did a lot of dumba** things myself...one thing I think that I have done right is to consider the possibility that my symptoms weren't due to continuing infection.

That is, if I had continued to insist that I was suffering from "chronic Lyme"...I never would have been tested for thyroid hormone deficiency...and I would still be suffering.

This is what I mean when I say that the patient's own perceptions may influence the eventual outcome.

It ain't religion, you know...
Last edited by Spanky on Tue 27 Jul 2010 19:15, edited 1 time in total.

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

Post by Martian » Tue 27 Jul 2010 19:15

Spanky wrote:Diagnosis was delayed in my situation by several years. And this was documented. And I was a freakin' mess...(I am sometimes just amazed at these people who claim they have had this thing for twenty or thirty years...what do they think this is, that we are talking about)?
I am one of these people who claim they have had this thing for twenty years.

My answer to your question: I think it was late Lyme disease.

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

Post by Spanky » Tue 27 Jul 2010 19:37

"
Martian":

I am one of these people who claim they have had this thing for twenty years.

My answer to your question: I think it was late Lyme disease.
Well, here is what prompted that remark...

Like anyone else, my perception of what Lyme disease is...and is not...is tempered by my own personal experience.

And I live in the Midwestern region of the United States, so there may well be differences depending on location, within the US...as well as differences from Europe to the US. I have heard, or remember reading, that the US version is supposed to be nastier. I have no idea if that is true.

But...I have the luxury, more or less, of having an exact date for the initial infection, as the offending tick was removed in a hospital following a routine colonoscopy. (And, assuming that particular tick was the guilty party, of course. It may not have been). But I did what research I could on the time frames, and it seemed as though these parameters were consistent...that well could have been, and probably was the bad guy. (I never saw the little b*****d. But I have the satisfaction of knowing that he didn't get anyone else. He paid the price. Or she...more likely...

So...I can also go back into my rather extensive medical record and see when certain symptoms appeared.

The tick was removed in July. By that same November, I was very visibly shaking, twitching. Unable to control my movements. And during that month, when Thanksgiving (American ritual pig-out) takes place, I dropped thirty pounds...in one month. And for me, that is bad...people said I looked bad, "gaunt". I wasn't one of the Lymies who looked "fine"...

By the following February, I had noticeable heart trouble. The February after that, I had to be hospitalized. Still undiagnosed.

So, the reason I say I have doubts about some of these stories, is that the Lyme disease that I am familiar with drove me to the doctors...and quickly. There was something seriously wrong. Wrong enough so that you knew you were screwed up and needed help. And the docs could see it, too.

They just didn't know what it was.

What I mean by that is that the Lyme disease I know...knocked me down on my butt...and fast, too. I have a hard time understanding how someone with that...could be around undiagnosed and untreated and not seeking medical attention for that length of time.

It ain't the minor "non-specific" aches and pains of daily living to my view...

Not saying that it's not possible...just saying that it doesn't fit with what I, myself, experienced.

It hit me fast and hard. But it seems as though no two people are exactly alike in how it affects them...
---------------------------

PS. I had been living in the Washington, DC area for a couple of years prior to moving back to Chicago. And there were loads of deer around there. And I was pulling ticks off me quite a bit. So, I have given this some thought...and yes, it is possible that I was infected out there, also. Or even nailed twice. But that still could have only added, at most, three years. The symptoms came on rapidly after the tick removal, and to this day, both my doc and I believe that was the one. A weird footnote to this is that I finally got diagnosed by a neurologist who had recently relocated to Chicago from Bethesda, Maryland, just up the road from where I was living in DC. He recognized the symptoms.

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

Post by Cobwebby » Tue 27 Jul 2010 20:53

Spanky to Cobweb: Well, I am really not trying to argue this with you, here, Cobby (and I certainly do NOT know)...but what I am saying is that may only be a perception that you have...and an incorrect one, at that.

I have to add here -that the Alzheimer's effect did not really seem to clear up until I stuck to my Rifampin /Omnicef protocal towards the end.

Very few regular docs ever address co-infections such as bartonella.
Did yours?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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

Post by Cobwebby » Tue 27 Jul 2010 21:04

I believe I was infected long before I was actually diagnosed. But it took a heavy duty emotional situation in my life to weaken my immune system to the point I could not longer fight it off on my own.

I hope for no further tragic life events to occur and continue to keep immune system up to snuff so, even if LD does try and come back my body will naturally fight it.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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

Post by Martian » Tue 27 Jul 2010 21:06

Spanky wrote:But it seems as though no two people are exactly alike in how it affects them...
Exactly, and this refutes what you were just saying. Further, it does not only seem so, it is a fact that no two people are exactly alike in how it affects them.
Spanky wrote:What I mean by that is that the Lyme disease I know...knocked me down on my butt...and fast, too. I have a hard time understanding how someone with that...could be around undiagnosed and untreated and not seeking medical attention for that length of time.
I guess there can be several explanations for that. (I know a few, personally)

Of course if you get some paralysis, it's very clear something is wrong and doctors can see it. But when you get things like fatigue, cognitive problems, concentration and memory problems, and over the years you get several other not so obvious complaints and it gradually gets worse, it's all not that clear. You won't know if it's all related, or even not realise it must be part of some medical condition.

For several reasons it took me a long time before I went to see some specialists for my unexplained "vague" complaints. After examinations nothing significant was found. The conclusions were: probably nothing wrong with patient; variety of complaints make one think of a possibility of hypochondria.

Then a few years later, after having the worst years with a lot of arrhythmia, dizziness, imbalance, I went to see the GP again (a new one) and told him about all my complaints. That was at the time when I first seriously considered Lyme disease as a possibility, and I told him so. My GP immediately said: well, I don't think it's Lyme disease, I think it's anxiety disorder. Apparently to him, the heart problems, dizziness and imbalance was probably caused by anxiety disorder. Talk about jumping to conclusions.

I insisted to be tested on Lyme disease, and I got a negative ELISA. So: no Lyme, said the lab, said the GP office, said the rheumatologist ("and you also MUST have swollen joints"), said the neurologist ("negative ELISA after so many years excludes the possibility of Lyme disease").

So that was in my medical files and new doctors got to see that, and they would think: Lyme disease has been extensively investigated, while this guy keeps insisted on the possibility of Lyme disease. In the end I got a diagnosis of chronic fatigue syndrome, which at least is some acknowledgement.

Not a single doctor seriously considered the possibility of Lyme disease all those years. So while I never saw a specialist in the first 10 years, this is how I got to 20 years, which could have been "just" 11 years.


edit: fixed typo of one word
Last edited by Martian on Tue 27 Jul 2010 21:39, edited 1 time in total.

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

Post by Spanky » Tue 27 Jul 2010 21:20

"Cobwebby":

I have to add here -that the Alzheimer's effect did not really seem to clear up until I stuck to my Rifampin /Omnicef protocal towards the end.
Okay...but are you suggesting that was the cause of it clearing up...or was it just coincidence?

I can show you my neuro-psych report from back then, too. I was on occasion, somewhat confused. (I remember even telling a friend that "Bush might not be so bad". See how "out-of-it" I was back then? My brain was clearly infected).

And again, all I have taken is orals.

I think that I am more or less back to normal...(unfortunately). Somewhat older...no wiser.
Very few regular docs ever address co-infections such as bartonella.
Did yours?
No. Remember...I am talking Chicago, here. And that means "we don't have it around here". Not even on the radar screen. And from my perspective, no one even knows where to find the damned IDSA treatment Guidelines around here. Seriously. Maybe they do now because of all the ruckus the Wonk kicked up...

So, my perception is that while you guys "out east" may have more exposure...you probably also have a better chance of being diagnosed more quickly and being treated more appropriately. For one thing, there are no "LLMD"s, here. (I was told to go to see "Dr.C" in Mo). I didn't.

I think that I asked for a Babs PCR (which was negative)...and I was also PCR'ed for leptospirosis. (Had been swimming in waterfalls in Hawaii. Yes, I know...I may have had it bad lately...but I had a damned fine time before... 8-)

But bartonella?

No. So far as I know (and Martian just posted some stuff on this today) there is no known linkage. No known ability of ticks to transmit the disease.

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

Post by Spanky » Tue 27 Jul 2010 22:05

"Spanky" wrote: "But it seems as though no two people are exactly alike in how it affects them..."
Martian:
Exactly, and this refutes what you were just saying. Further, it does not only seem so, it is a fact that no two people are exactly alike in how it affects them.
Yes, well, whether that refutes what I was just saying or not depends on what you understood me to be saying, doesn't it?

And I wasn't saying that those people, that claim to have had it for twenty or thirty years, do or do not have Lyme disease...hell, I don't know...and would never offer an opinion on something like that.

As I said, I was trying to say that your perception of the disease is affected by your personal experience. And to my experience, it smacked me hard. And that's how I see the disease.

That's all. I was NOT questioning anyone else's diagnosis. That's really not what I meant. What I meant was the Lyme disease THAT I KNOW...isn't like that.

That isn't the same as saying that it cannot be. I realize that, I think...and hell, who knows if I had it? Really?
I guess there can be several explanations for that. (I know a few, personally)

Of course if you get some paralysis, it's very clear something is wrong and doctors can see it. But when you get things like fatigue, cognitive problems, concentration and memory problems, and over the years you get several other not so obvious complaints and it gradually gets worse, it's all not that clear. You won't know if it's all related, or even not realise it must be part of some medical condition.
Right.

As I said, though, there are objective indications in my records. For instance, another neurologist who examined me noted that the obvious physical tremors where "organic"...not psychosomatic.

There were lots of exams and tests and some of these produced abnormal results. Echocardiograms. the weight loss. At the time, I wasn't processing fats at all, apparently. All noted. The problem, of course, is even with objective signs and symptoms noted, none of this is unique or specific to Lyme disease. One of the things that may have helped, though, in hindsight, was the testicular pain. It was overlooked. Once STDs tested for (several times, so, see they suspected infection) and were dismissed (and I told them that wasn't a possibility)...they simply didn't look any further. They even said it was "referred pain". Despite the swelling. Later turned out to be epididymitis. Infection. So, see, the clues were there...

But see, I was shaking badly. Visibly. Anyone could see this. My head would move from side-to-side as if I were signalling "no". My hands would shake. Sometimes my whole body would move from the waist up...rock back and forth. I am talking about major central nervous system type stuff. I wouldn't go out in public much as people would stare...myoclonus is the technical term, I guess. My leg would sometimes spasm so badly that I would fall down. I mean, you couldn't miss this. Even my dog would get upset when it was happening.

And the neurologist that noted the "organic" tremor? He was told about the tick being removed. He thought I had "benign essential tremor"... a largely hereditary condition. (Despite no familial history of this, at all).

See, the lesson I drew from that was just that they didn't even suspect. Didn't even occur to them to even consider the possibility.

What eventually happened was that when I wasn't responding to treatment for benign essential tremor, we got a second opinion...and luckily, it was this guy from Bethesda. So, I described the tremors to him...and he says, "well, there are a few things other than Parkinson's that can do that...Lyme disease, for instance"...and my jaw just dropped...and I told him that I had this tick removed shortly before all of this happened...and there was just dead silence for like, a minute and a half...and then, he says, "well, we aren't going to resolve that, today"...but we tested...and the ELISA was positive.
For several reasons it took me a long time before I went to see some specialists for my unexplained "vague" complaints. After examinations nothing significant was found. The conclusions were: probably nothing wrong with patient; variety of complaints make one think of a possibility of hypochondria.
One of the things, I think, that should be considered, is simply whether the patient's symptoms improve with exposure to antibiotics. My "benign essential tremor" disappeared with antibiotic therapy. And hasn't returned.

And I will tell you that even though by the time that I was eventually diagnosed, my record was becoming filled with corroborating objective reports ("there is something going on with you", they would say, like, yeah, that's what I have been telling you, dammit)...once the word "Lyme" was introduced...even though it was NOT me who did so...subsequent physicians did act as though it was me that had suggested it... and an ID sort of imperiously then dismissed the diagnosis, out-of-hand.

So...rule #1...you can't win.

Let's all be clear on that... :D

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

Post by Martian » Tue 27 Jul 2010 23:09

Spanky wrote:"Spanky" wrote: "But it seems as though no two people are exactly alike in how it affects them..."
Martian:
Exactly, and this refutes what you were just saying. Further, it does not only seem so, it is a fact that no two people are exactly alike in how it affects them.
Yes, well, whether that refutes what I was just saying or not depends on what you understood me to be saying, doesn't it?

And I wasn't saying that those people, that claim to have had it for twenty or thirty years, do or do not have Lyme disease...hell, I don't know...and would never offer an opinion on something like that.

As I said, I was trying to say that your perception of the disease is affected by your personal experience. And to my experience, it smacked me hard. And that's how I see the disease.

That's all. I was NOT questioning anyone else's diagnosis. That's really not what I meant. What I meant was the Lyme disease THAT I KNOW...isn't like that.

Well, you said:
I am sometimes just amazed at these people who claim they have had this thing for twenty or thirty years...what do they think this is, that we are talking about)?
and:
So, the reason I say I have doubts about some of these stories, is that the Lyme disease that I am familiar with drove me to the doctors...and quickly.
This sure looks like taking your own single experience and "projecting" it at others.

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

Post by Cobwebby » Tue 27 Jul 2010 23:48

"Cobwebby":
What is gone gone gone- for which I am most thankful is what I call the Alzheimer Effect of Lyme Disease.
The scariest aspect for me. I do not think that issue would have been addressed effectively if not for an LLMD. That alone is priceless.

Spanky
Well, I am really not trying to argue this with you, here, Cobby (and I certainly do NOT know)...but what I am saying is that may only be a perception that you have...and an incorrect one, at that.

Cobwebby
But if we really don't know why my brain fog cleared, even though I attribute it to the Rifampin mostly, then it may not be an incorrect perception .

I think if I had stayed with mainstream doctors they would have me being treated for Alzheimers now.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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