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» LymeNet Flash » Questions and Discussion » Medical Questions » ALS and Lyme

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Author Topic: ALS and Lyme
ahmet ozbek
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I know somebody who had bull's eye erythema on her body 5 years ago. He has been having strength decrease and thinning on her right shoulder and left crotch. Lyme test outcomes as negative. CD57 is at normal level. Some doctors say that it is because of ALS but some others say that it is because of motor neurone disase related to lyme.

Is there anybody who has ALS related to lyme? If there is somebody who has this problem has she/he ever had complete progress or recession?
Or does anybody know /hear something about it?
Thank you for every input . Ahmet

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poppy
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Yes, lyme can cause muscle wasting that looks like ALS. If it is not caught too late, lyme treatment will improve or at least stabilize these people.

Lyme testing, as you know, is not very good. Did she have any symptoms after the bulls eye rash? Or is all this more recent.

ALS is always fatal, so it would be important to be sure that it isn't lyme instead, because that is treatable. The treatment might be different in that these patients sometimes can only tolerate lower doses of antibiotics.

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TF
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Dr. David Martz had the ALS diagnosis and also lyme-like symptoms. He overcame the ALS (or lyme), as I recall.

You may want to do a search on the internet of his name. Here he is on YouTube:

http://www.youtube.com/watch?v=UY9FdULDV6M

Many people get the diagnosis of ALS and they really have lyme disease, as I understand.

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TF
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Here's another site:

http://stevensponauglewordpress.com/?p=1083

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Keebler
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Dr. Martz and his journey with mis-diagnosed "ALS" that was really lyme & babesia is also detailed in the documentary

UNDER OUR SKIN - www.underourskin.com & at Hulu

---------------------

http://www.als-cure.com/ALS.pdf

When ALS is LYME - Revision: Nov 17, 2012

By Sarah and John Vaughter

Free pdf download, 169 pages


Article at their site:

http://www.als-cure.com/

ALSUntangled prevents ALS cure by disinfo for profit?
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[ 02-12-2013, 04:54 PM: Message edited by: Keebler ]

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Rumigirl
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Yes, ALS is usually Lyme and other co-infections, especially Mycoplasma (of which there are numerous kinds or strains).

Dr. M used to treat ALS patients, but is now out of practice. But others have taken over the practice and specialize in treating ALS/Lyme patients. The clinic is in CO. PM me, if you want the info. (I realize that you are in Turkey, however!).

Very good Lyme and co-infection diagnosis and treatment by someone who is experienced in working with ALS patients would be of the utmost importance, as they require somewhat different care. And time is of the essence with ALS! So they should follow up on this as soon as possible, if they are interested.

ALS is one awful disease! I lost my father-in-law to it before I knew all this.

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ahmet ozbek
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TF,Poppy,Keebler, Rumigirl Thank you for your contribution.
Rumigirl , This Friend not enough money and will need to continues his therapy on Turkey condition.But thanks for info, perhaps it could be need to other Turkish people

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ahmet ozbek
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TF,Poppy,Keebler, Rumigirl Thank you for your contribution.
Rumigirl , This Friend not enough money and will need to continues his therapy on Turkey condition.But thanks for info, perhaps it could be need to other Turkish people

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Rumigirl
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Your friend's doctor could try contacting the people at the clinic I mentioned, and perhaps they could get some direction on his treatment. Again, PM me, if you want the info.

I heard Dr. M lecture on Lyme treatment for ALS, and they did find specific things, particularly that ALS patients need IV treatment (rocephin), but must have lower doses, or else the die-off reactions can be serious.

There would be more info, of course.

The other alternative is for your friend to get a good rife machine and use it. But I would recommend good IV Lyme treatment and treatment for co-infections. Do you have any doctors who treat Lyme in Turkey?

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ahmet ozbek
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Rumigirl, a few Doctor partially knowledgeable in chronic lyme disease treatment in Turkey.
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Keebler
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Relevant, regardless of treatment:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER SUPPORT LINKS & and several HERXHEIMER support links, too.

Some KIDNEY support detail, too.
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Keebler
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For anyone new to all this, backing up for A FEW BASICS
------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

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

The Lyme Controversy:

http://www.youtube.com/watch?v=PVPRWiukp_M

http://www.youtube.com/watch?v=8yk0C-uX9cU&feature=related


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031097;p=0

Topic: NPR (Nebraska) Radio Interview

See listener comments, too. They show us how very wrong of the ID (Infectious Disease) doctor who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme.

Neurologists & rheumatolgists also follow the same umbrella group (IDSA) that ignores lyme and discounts those who have it.
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Keebler
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http://www.nbcnews.com/health/health-news/ancient-virus-may-cause-crippling-disease-als-study-finds-n436911

Ancient Virus May Cause Crippling Disease ALS, Study Finds

by Maggie Fox - NBC, Health - Oct. 1, 2015
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bluelyme
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Thanks keebs ...so does anyone have a frequency for herv2 ,char boehme maybe? ..all the lyme tx in the world wont resolve a virus..

.wondering if i activated it with sulfamethoxazole. I was a real human before that lots of lyme sx but i was functional..

I found old posts of lou, mathais and others ...seems like bart and myco are at play... i really need a triquarter or a noose

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Blue

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Jordana
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BVT kills viruses [Smile] .
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bluelyme
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On it ...thanks jordana...back up to my full stings today...yahhwhoooooo

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Blue

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bluelyme
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Where do i get mycoplasma testing?...


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/127208#000006

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Blue

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Lymedin2010
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Recent ALS is really LD links.

Hmmmmmm, so "Soccer has been identified as the riskiest sport activity, so far." for the development of ALS.

So let's analyze this. Which of the sports leads to the most miles run per individual player (volleyball, baseball, football, or soccer)?

Which of the sports leads to the ball being trajected outside the playing area & exposing the players to bushes and taller grass?

I would say that the soccer player covers more running ground per game & in total during their career & is more likely to send the ball out of bounds. As a result they are more likely to come in contact with a tick & develop LD or ALS. In fact, I have family in soccer & they had tiny nymph deer ticks on their bodies during practice and have seen this firsthand.

Then it stands to reason that In a physically demanding sport, where the muscles & nerves are constantly utilized, over worked, & stressed, that Borrelia may find an easier breeding grounds in those stressed areas. The area acts as a point-source infection, where biofilm can form & spread to adjacent damaged tissues. So we observe the DAMAGE (ALS, MS, or Parkinson's) before it can reach an AIDS-like disease, as we see in full blown Chronic Lyme Disease.

Logically this makes sense to me?

http://www.als-cure.com/als-clusters/italian-als-cluster-soccer-football/

http://www.als-cure.com/als-lyme/als-patients-infected-with-lyme-bacteria-borrelia-spirochetes/

https://www.youtube.com/watch?v=UY9FdULDV6M

http://www.mercurynews.com/ci_15633546

http://www.opposingviews.com/i/health/when-doctors-told-man-he-was-dying-als-he-refused-believe-them-they-thought-he-was-just

http://www.valleybreeze.com/2016-01-26/pawtucket/tara-geraghty-s-mission-fight-chronic-lyme-and-those-who-reject-it#.VuX1j-Ye0jz

http://www.valleybreeze.com/2014-12-17/cumberland-lincoln-area/geraghtys-doctors-pushed-als-diagnosis-ignored-lyme#.VuX1sOYe0jz

http://healthdetails.site/lyme-disease-sufferer-misdiagnosed-with-als/

http://www.mommypage.com/2016/02/dying-dad-takes-antibiotics-for-strep-throat-thats-when-he-finally-starts-feeling-better/?utm_source=ape_tickld

https://www.youtube.com/watch?v=7T6e8UIv0Tw&sns=fb

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Phoiph
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I met someone recently who's brother died of ALS. It was not the hereditary type.

He spent much of his younger life caddying on the golf course, and then as a semi-professional golfer later.

It was though that exposure to fertilizer and weed killers on the course may have contributed. I am wondering if the link to soccer could be also related to toxins on the field.

Perhaps the combination of Lyme and certain toxic chemical exposure creates a "perfect storm" situation neurologically...

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