posted
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
Posts: 182 | From turkey | Registered: Jan 2008
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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:
Many people get the diagnosis of ALS and they really have lyme disease, as I understand.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
ALSUntangled prevents ALS cure by disinfo for profit? -
[ 02-12-2013, 04:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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
Posts: 182 | From turkey | Registered: Jan 2008
| IP: Logged |
posted
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
Posts: 182 | From turkey | Registered: Jan 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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?
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Rumigirl, a few Doctor partially knowledgeable in chronic lyme disease treatment in Turkey.
Posts: 182 | From turkey | Registered: Jan 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
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.
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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...
Posts: 1880 | From Earth | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/