Chronic Lyme: Belief over Science

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.
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Re: Chronic Lyme: Belief over Science

Post by X-member » Sat 14 Aug 2010 20:27

Answer to Spanky:

What is "post-infectious syndrome"?? I am sure they still don't know!

And what do IDSA (or other not-so-very-good-experts-in-chronic-infections) say about CWD/L-form?

And placebo effect don't show improvement in blood tests. I have such proof too! ;)

No physician has ever told me what I "should feel"! :D

But, now the Swedish physicians don't have to see me in the emergency room "all the time", because my earlier really bad symptoms, now are gone when I am on abx.

Do you really think that is isn't an infection any longer in my case, and that I should stop my treatment?

Actually, I have considered to do such a test (to stop my treatment), because I would like to show the "experts" that they are wrong!

I hope you don't actually believe that the bacteria is gone, when a person only have had 4 weeks treatment with only one type of abx, when you have had Lyme for a long time before this treatment?

The bacteria i still there, but in cases with good immune defence, it maybe don't give any symptoms.

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Re: Chronic Lyme: Belief over Science

Post by Spanky » Sat 14 Aug 2010 23:30

"Carina":
What is "post-infectious syndrome"?? I am sure they still don't know!
No, they really don't. You are right. And that's the "other side of the coin"...they don't offer much help or hope to people who keep having symptoms...or any particularly solid theory of what exactly Post-Lyme-Syndrome really is.

There MAY be some progress, though, reflected in this recent study:
Dr.Armin Alaedini, Assistant Professor of Neuroscience at the Weill Medical College of Cornell University, spearheaded the first study. Dr.Alaedini and his colleagues analyzed blood and spinal fluid of patients whose symptoms persist after antibiotic treatment with asymptomatic post-treatment patients. Dr. Alaedini demonstrated that patients with persistent symptoms had elevated levels of anti-neuronal antibodies compared to those who were no longer symptomatic. His findings on "Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms" were published in a March 2010 issue of Brain, Behavior, and Immunity.

The results demonstrated that the infection can trigger an ongoing abnormally activated immune response in some patients, offering new clues about the cause and development of the disease that may prove useful in devising more effective treatment strategies. Being able to distinguish Lyme from other diseases that can cause cognitive problems is crucial in differential diagnosis and treatment planning. This validation of an autoimmune response benefits patients whose doctors and insurance providers may refute their chronic symptoms were caused by Lyme disease. "Dr. Alaedini's research has uncovered some of the responses of the immune system in persistent disease, and perhaps, persistent infection," says Dr. Kotsoris.
http://www.connecticutplus.com/cplus/in ... 9461.shtml


If this is true, it might be the beginning of getting some recognition, at least, that the symptoms are very real...and getting something done in terms of helping people cope.

And what do IDSA (or other not-so-very-good-experts-in-chronic-infections) say about CWD/L-form?
Sorry, I really do not know. But again, the issue isn't exactly survivability or persistence...but the ability to continue to drive a patient's symptoms.

Do you really think that is isn't an infection any longer in my case, and that I should stop my treatment?
No. Absolutely not. I try not to advise anyone. No one should take anything I say as advice. And remember that I am in the US and we are probably talking about differences in the way the disease strikes patients between the US and Europe, also.

I think you should do what you and your doctors think is best for you under all the circumstances.

I hope you don't actually believe that the bacteria is gone, when a person only have had 4 weeks treatment with only one type of abx, when you have had Lyme for a long time before this treatment?
That's just it, though...did you notice that you used the word "believe"? It isn't aquestion of what I believe...but what the evidence supports.

Now, the evidence that we have today may well, someday, prove to have been wrong and very misleading.

But for here, today...we have to go where it takes us...and only there, I think.

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Re: Chronic Lyme: Belief over Science

Post by X-member » Sat 14 Aug 2010 23:32

Good answer!

Thank you, Spanky! 8-)

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Re: Chronic Lyme: Belief over Science

Post by Spanky » Sat 14 Aug 2010 23:49

"Carina":Good answer!

Thank you, Spanky! 8-)
No, THANK YOU!

That's the first time I have ever heard that!

And probably the LAST time, too! :lol:

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Re: Chronic Lyme: Belief over Science

Post by Cobwebby » Sun 15 Aug 2010 22:18

With my simplistic interpretation of my health, it is my belief that I had Lyme Disease, scientifically verified every which way through blood analysis. I was treated for Lyme Disease successfully, and now it is my belief-because I really don't know- but I believe LD has left me with some chronic inflammation.

Ongoing diagnosis, again verified through testing, is Interstitial Cystitis, a chronic inflamation of the bladder, and Arthritis, chronic inflamation of major joints.

I found this article about Chronic Inflamation Disease interesting.
www.achooallergy.com/chronic-inflammation-disease.asp ·

It also seems to verify my need to stay in close touch with my oncologist-even though I have passed the five year mark- I still go every 6 months.

Bottom line-Once Lyme disease has effected our bodies we need to stay vigilant to the effects of chronic inflamation.

Of course, many of us no longer treating for lyme, still autimmune disorders-like Hashimotos, and I don't know what category the residual heart problems fall under.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Re: Chronic Lyme: Belief over Science

Post by X-member » Sun 15 Aug 2010 22:41

European Lyme (B Afzelii) don't cause much inflammation. So, what causes our symptoms after a "proper" (2 - 4 weeks with only one type of abx) treatment?

No, I think you/they are wrong when we talk about chronic (=of long duration) Lyme.

Have you ever read some of Lida Mattmans info or maybe her book? About CWD/L-form?

I read it now, and I find it very interesting!

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Re: Chronic Lyme: Belief over Science

Post by Cobwebby » Mon 16 Aug 2010 3:56

Carina- if you are asking me, no-for myself at least, I do not believe I have chronic lyme-but post lyme disease symptoms.
Carina wrote:European Lyme (B Afzelii) don't cause much inflammation. So, what causes our symptoms after a "proper" (2 - 4 weeks with only one type of abx) treatment?

No, I think you/they are wrong when we talk about chronic (=of long duration) Lyme.

Have you ever read some of Lida Mattmans info or maybe her book? About CWD/L-form?

I read it now, and I find it very interesting!
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Re: Chronic Lyme: Belief over Science

Post by X-member » Mon 16 Aug 2010 13:43

Cobwebby, you wrote:
Carina- if you are asking me, no-for myself at least, I do not believe I have chronic lyme-but post lyme disease symptoms.
I don't know your story, but you had treatment very early, then?

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Re: Chronic Lyme: Belief over Science

Post by X-member » Mon 16 Aug 2010 14:15

I think I have to explain this better!

You can still have the bacteria in your body, but you maybe don't need more treatment. The immune defence "take care" of it (keep it "latent").

The bacteria maybe "stay" in different places in the body, and maybe it is a difference in how chronic (=of long duration) American Lyme (BBss) express itself, compared to chronic European Lyme (B Afzelii).

What I think, it that it isn't only inflammation, caused by an eradicated infection. I think it is a "low-grade" (CWD/L-form) infection that probably are "latent" ("non-invasive") that cause this inflammation.

Lida Mattman (and others) have found bacteria in many cases with "autoimmune" disorders.

This is what I think, based on what I have read, and I (myself) can not prove it in any way!

Cobwebby
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Re: Chronic Lyme: Belief over Science

Post by Cobwebby » Mon 16 Aug 2010 16:05

Carina said "You can still have the bacteria in your body, but you maybe don't need more treatment. The immune defence "take care" of it (keep it "latent")."

Yes-this is more what I really believe. At my last visit for lyme treatment, after I had reached a certain level of wellness, my LLMD cautioned that we really don't know if the bacteria are ever really gone-and the best way to approach this was to maintain the immune system

I like to think of it as GONE as in cured-just for my own peace of mind. There's a saying mind over matter-I'm trying to put mind over matter. There does not seem to be any definitive way to test for a cure-but I was told that improvement in a Spect Scan could document improvement . However I prefer to go on empirical evidence-I.E. the fact that I am thinking more clearly and functioning better is enough for me.

TRUTH? i don't think I could handle it if I had a repeat SPECT SCAN and it did not show improvement. That would be too discouraging for me.

Some folks may argue that I am living with denial-and a relapse is just around the corner, but for now, I cope better with the belief that my LD is a thing of the past.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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