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» LymeNet Flash » Questions and Discussion » General Support » Looking to hear about other's lyme disease experiences

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Author Topic: Looking to hear about other's lyme disease experiences
ladybugcoffeemocha
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Hi there everyone- I am doing a report on lyme disease in my human genetics college class. I was hoping some of you would share your lyme disease experience, as well as symptoms. I came down with lyme disease symptoms last winter and it would be nice to hear about all your experiences as well. I have been to many doctors, just like you all have, and the last doctor I saw told me that I had an autoimmune disease, but both of the rheumatologists that I saw told me that I had no autoimmune disease at all, as well as lyme. The past few months I've been having many more symptoms arise. Hope to hear from some of you. [Smile] Thanks!
ladybug

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Carol in PA
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You have typed a solid paragraph, so many people here cannot even read it.

What does Lyme have to do with genetics?
They haven't figured that part out yet, I don't think.


Read about Otzi, the Ice Man, found mummified in a glacier in the Alps.
He's 5000 years old, and they found the Lyme bacteria in his cells.

Otzi's body showed evidence of arthritis and of heart disease (calcification of blood vessels).
Some Lyme researchers have noted that the inflammation of Lyme Disease can cause arthritis and heart disease.

So obviously, mankind has been living with tick borne infection for many thousands of years.


Many of our "diseases" and signs of aging are actually due to tick borne infection.
BTW, this view is not espoused by the American Medical Association, so be prepared to get alot of flack if you say this.


Here is a good list of symptoms:
http://canlyme.com/lyme-basics/symptoms/

Have you made an outline for your report?
How long is the report supposed to be?
You have several posts started, but they all run together and there is no organization.
This is a HUGE topic, you'll need to narrow it down to one or two aspects.


If you want people's experiences, all you need to do is start reading here at LymeNet.
In almost every thread, there are contributions from experienced and knowledgeable people, about many subjects related to Lyme.

Posts: 6918 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
momlyme
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You might get more response if your question was more specific. It's so vague, I am not sure what you want!

I tested positive for Lyme, bartonella, mycoplasma pneuonia, heavy metals and mold.

My son tested positive for Lyme, bartonella, mycoplasma pneuonia,, mycoplasma fermentis, HHV-6, ehrlicia, RMSF, babesia, heavy metals, strep and mold

We all have our own toxic soup.

My son and I are completely well. He has been well almost a year. I have been symptom free and feeling 100% for 79 days.

http://www.total-nutrition-today.com

I am slowly putting our story up there.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Lymetoo
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info here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Since your report is for a genetic class, this is relevant. More gestational than genetics but, still, relevant:

Lyme Induced Autism Foundation

www.lymeinducedautism.com/
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
ladybugcoffeemocha
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Lyme has a lot to do with genetics, actually. How the borrelia burgdorferi bacteria's genome affects our genome (pathogen host interaction), is what I am doing my report on.

My research paper has to be 10 pages long and I do have an outline, but am still adding to it. There's a lot to the disease. My professor's husband had an undiagnosed case of lyme disease for quite some time, due to negative serology lyme tests.

I didn't think that lyme had much relation to genetics, but she was the one who told me I should write my report on lyme. I have been very sick lately and a few weeks ago, my doctor told me that there was a 97% chance I had an autoimmune disease and no one is listening to me about the lyme. I am trying to reach out for support from you all.

I was going to start out writing about the lyme bacteria and the disease it causes, which is where the pathogen host interaction part comes in... how the borrelia burgdorferi enters a human, how the bacteria interacts with our genome, and therefore, which symptoms people result with.

I wanted to describe the first symptoms that people get and work my way up to chronic lyme. How does borrelia cause all of these symptoms we have? That is the genetics part of it.

I want to get the word about about the disease. I may not have been on here long and haven't done any commenting, but I believe I am dealing with the same disease the rest of you are. I have children like the rest of you.

Thank you for the links and I'm sorry for being so vague. I have been feeling pretty vague and not myself, lately. The links are extremely helpful. I'll be checking back later.
ladybug

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ladybugcoffeemocha
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Not to mention the real statistics about lyme disease.
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Carol in PA
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Okay, you can cover alot of ground in ten pages, but still, it's a huge topic.

How does borrelia cause all of these symptoms we have?
That is something I've been learning the last nine years...let me think, and I'll put down more.

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Keebler
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You would need to see the work of researcher Eva Sapi. She has commented on how many more genes -- and how much more genetically complex Borrelia is, compared to its distance cousin, syphilis.

If people though syphilis was complex, Borrelia is WAY more so, according to her work, and that of others. Alan MacDonald, especially.

Be sure to watch all the ILADS Boston conference that you can this weekend. It's all FREE just today and tomorrow.

details here:

www.ilads.org

ILADS
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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Read all you can from Tom Grier, MS. He has a five part paper on MICROBIOLOGY OF LYME.

http://www.wisconsinlyme.net/p/tom-grier-microbiologist.html

Tom Grier, Microbiologist

==================================

And see this, by different set of authors:

http://www.townsendletter.com/FebMar2006/lyme0206.htm

THE BIOCHEMISTRY OF LYME

=====================================

Don't rely on the "science" of lyme, itself, but also realize that much of the damage is due to the damage it can do to the heart, the liver, to the endocrine system, to the EARS, etc.

It's a cascade, for sure. When any system or organ is damaged, all bets are off. And this can differ for each patient.
-

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Keebler
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You ask of others' experience with lyme. A "must-read" description of how it's been for me. It's like he was writing my case (and many say that after reading this, too).

http://cassia.org/essay.htm

When To Suspect Lyme Disease

(and how to make sense of symptoms during it)

- by John D. Bleiweiss, M.D.
-

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LymeLearned
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I am anxious to weigh in because I had/have kidney failure from Lyme, and never knew it was one of the things that could happen. Three years in, I still can't stop abx without sinking into an infection again. I'm treading water. There's a host of other issues (raynaud's), muscle/spine/memory, or I'd remember the rest. [Smile]

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

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dbpei
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I have had the following symptoms as a result of lyme disease:

hearing loss
tinnitus
sound sensitivity
sound distortions
depression
anxiety
difficulty focusing
difficulty multi-tasking
word finding problems
vibrations or pulsating sensations (head/hands...)
fatigue
joint pain
forgetfulness

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Robin123
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The bacteria have more genes than any other bacteria. They are able to change their outer proteins to fit the host as well as respond to changing conditions within the host.

The bacteria like lipids, and so are found in the brain within 12-24 hours, where they start to inflame nerves.

They also corkscrew through tissues and can get into any tissue. Basically a Halloween horror tale...

Re genetics - there's another way genetics affects our experience of Lyme - our genetic ability to detox.

Treatment for Lyme falls in three categories - kill/deter the organisms, detox and fortify the body.

Detoxing is needed since there is so much inflammation and the bacteria also put out neurotoxins. If we can detox easily, we do better than if we can't.

There is a genetic test, the detoxigenomic liver test, done through Genova Diagnostic Lab in NC, that shows our genetic ability to detox. Also the Amy Yasko tests show this too. It can explain why some of us can handle treatments and others of us are extremely sensitive.

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