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» LymeNet Flash » Questions and Discussion » Medical Questions » Is ALS (Lou Gehrig's disease) usually really Lyme disease?

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Author Topic: Is ALS (Lou Gehrig's disease) usually really Lyme disease?
Angelica
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I am wondering because I was just reading in the local paper how two people from my county recently died from ALS.

One was only 45 and left behind young children. If it is actually untreated Lyme disease it makes it even more tragic.

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Tincup
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Sorry to hear about your neighbors. A tragedy for any reason.

Some cases diagnosed as ALS can be Lyme disease. Each person with Lyme can be affected differently... and an ALS presentation is possible.

ALS is basically a list of symptoms someone has... that the cause and cure is unknown. Some people diagnosed with ALS actually had Lyme disease.

BTW- Lou Gehrig... the condition ALS was named after... was a baseball player back when artificial turf wasn't the surface where most played ball.

Therefore, most people played in the grass. He was also known to be in/play/stay in the Lyme, CT area often.

Hope that helps.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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wrotek
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People who have Lyme are sometimes misdiagnosed with ALS, if their symptoms are very severe.

One of the scientists, who studied this connection very extensively, is Lida Mattman.

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Lymeblue
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Wien Med Wochenschr. 1995;145(7-8):186-8.

Links
[ALS-like sequelae in chronic neuroborreliosis]
[Article in German]


H�nsel Y, Ackerl M , Stanek G .
Neurologischen Abteilung des Kaiser-Franz-Josef-Spitals, Wien.

CSF investigation in a 61-year old female patient with clinical picture of motoneuron disease gave evidence for chronic infection with Borrelia burgdorferi. Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amyotrophic lateral sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.

PMID: 7610670 [PubMed - indexed for MEDLINE]


Arch Neurol. 1990 May;47(5):586-94. Links
Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease.
Halperin JJ, Kaplan GP, Brazinsky S , Tsai TF , Cheng T, Ironside A, Wu P , Delfiner J , Golightly M , Brown RH , et al.
Department of Neurology, State University of New York, Stony Brook 11794.

Of 19 unselected patients with the diagnosis of amyotrophic lateral sclerosis (ALS) living in Suffolk County, New York (an area of high Lyme disease prevalence), 9 had serologic evidence of exposure to Borrelia burgdorferi; 4 of 38 matched controls were seropositive. Eight of 9 seropositive patients were male (8 of 12 male patients vs 2 of 24 controls). Rates of seropositivity were lower among patients with ALS from nonendemic areas. All patients had typical ALS; none had typical Lyme disease. Cerebrospinal fluid was examined in 24 ALS patients--3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti-B burgdorferi antibody. Following therapy with antibiotics, 3 patients with predominantly lower motor neuron abnormalities appeared to improve, 3 with severe bulbar dysfunction deteriorated rapidly, and all others appeared unaffected. There appears to be a statistically significant association between ALS and immunoreactivity to B burgdorferi, at least among men living in hyperendemic areas.

PMID: 2334308 [PubMed - indexed for MEDLINE]


Med Mal Infect. 2007 Jul-Aug;37(7-8):435-45. Epub 2007 Mar 9. Links
[Neurologic and psychiatric manifestations of Lyme disease]
[Article in French]


Blanc F; GEBLY.
D�partement de neurologie, h�pitaux universitaires de Strasbourg, 1, place de l'H�pital, 67091 Strasbourg, France. [email protected]

The neurological and psychiatric manifestations of Borrelia burgdorferi sensu lato are so numerous that Borrelia is also called the "new great imitator". Thus knowing about the multiple clinical aspects of neuroborreliosis is necessary for the clinician. We reviewed literature for "classical" neuroborreliosis such as acute meningoradiculitis or chronicle encephalomyelitis, but also for encephalitis, myelitis, polyneuritis, radiculitis and more controversial disorders such as chronic neurological disorders, ischemic and hemorrhagic stroke, and motor neuron disease. We specified every time on which basis each disorder was attributed to Lyme disease, particularly if European or American criteria were met. Every part of the nervous system can be involved: from central to peripheral nervous system, and even muscles. In endemic areas, Lyme serology must be assessed in case of unexplained neurological or psychiatric disorder. In case of positive serology, CSF assessment with intrathecal anti-Borrelia antibody index will be more efficient to prove the diagnosis.

PMID: 17350199 [PubMed - indexed for MEDLINE]


Rev Neurol (Paris). 2006 Jun;162 Spec No 2:4S50-4S56. Links
[What is the role of other complementary examination in amyotrophic lateral sclerosis?]
[Article in French]


Tranchant C.
D�partement de Neurologie, H�pitaux Universitaires, Strasbourg. [email protected]

Amotrophic lateral sclerosis diagnosis is based on clinical and electrophysiological findings. Transcranial magnetic stimulation and MRI can show abnormalities which are not specific, but which can confirm upper motor neuron involvement. The other tests are performed to exclude differential diagnosis. Tests which should be performed in every cases are: medullar MRI, blood counts, erythrocyte sedimentation, serum protein electrophoresis, calcium, phosphore, serological tests for HIV, siphylis, Lyme disease. Other tests are made in some clinical circumstances to exclude genetical disease or metabolic disorders (SMN gene, Kennedy gene, Hexosaminidase A, very long chaine fatty acids), haematological or paraneoplasic disorders (anti-neurons antibodies, PSA, CT of chest and abdomen, mammography, bone marrow biopsy) or inclusion myositis (muscle biopsy).

PMID: 17128090 [PubMed - indexed for MEDLINE]


J Neurol Neurosurg Psychiatry. 1997 Aug;63(2):257-8. Links
Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection.
Hemmer B, Glocker FX, Kaiser R , L�cking CH , Deuschl G .
PMID: 9285472 [PubMed - indexed for MEDLINE]


Acta Neurol Scand. 2007 Feb;115(2):129-31. Links
Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy.
Harvey WT, Martz D .
Rocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO 80909, USA. [email protected]

This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.

PMID: 17212618 [PubMed - indexed for MEDLINE]

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Angelica
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Today two out of ten people listed in the obit section of the local paper for my county died of ALS.

Not only is this tragic if they maybe had undiagnosed Lyme disease and did not get correct medical help or treatment when they could have been possibly helped but it makes me think that Lyme disease is spiraling out of control in the USA. Not that I did not think that before but to see two ALS obits listed in a row just pounded that idea into my head even more.

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cactus
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I have a family friend who was diagnosed with ALS, and later learned he had Lyme. Sadly, he did not make it, but they feel it was ALS secondary to Lyme. He was an artist, who often did outdoor shows.

Another neighbor recently died due to ALS. She did not explore Lyme, but both of her dogs had Lyme. She was young, and left behind 2 small toddlers. I've always wondered if it was Lyme-related as well.

Both of these people lived in VA. Very sad to think it may have been Lyme.

--------------------
�Did you ever stop to think, and forget to start again?� - A.A. Milne

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NElyme
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It would be tragic if als was misdiagnosed.Both

diseases are diagnosed clinically,on sympthoms.

Although they can mimic each other,it is

unlikely that lyme would kill you,like ALS would.

There is some thinking that motor neuron diseases

could be triggered from the lyme viruse.

I have been diagnosed with both as well.

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CraigC
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"Although they can mimic each other,it is unlikely that lyme would kill you,like ALS would."

Bingo!! Abx can treat Lymies, and thus bring about some remission of symptoms. There is nothing that medical science provides today, that will put ALS in remission.

--------------------
Craig

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lou
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Lyme can kill you for sure, and not just the kind that looks like ALS.

I personally think that the ALS presentation of symptoms can be caused by multiple things.....same destination, but different ways to get there. Lyme is one of them.

And if it is lyme causing the ALS-like symptoms it is very tricky to treat. Some of these patients do well on aggressive doses of abx, mostly IV, but others seem to get worse and have to go with very low or pulsed doses. Apparently the herx in this form can produce cytokines that also kill neurons. So, Bb kills neurons and treating it the usual way in some people can also kill neurons. Catch 22. This is where I am.

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NElyme
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I agree with Lou,,IV ROCEPHIN seems to have flared up my loss of motor skills.At first I

hoped it was a herx,now doubting it.

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CraigC
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Lyme can kill, but it can also see benefits with treatment from abx. The same can't be said for patients with ALS, since it is a rapidly progressing disease, with no hopes of remission.

--------------------
Craig

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lou
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NELyme, I can't say definitely what is happening to you, but my point was that the herx does cause more damage in some ALS/Lyme patients. So, your apparent worsening on rocephin probably is a herx. Whether this is killing neurons in your case is the question. There is herxing that you can recover from and some that is destructive and not easily reversed.

This is a very important question for you to figure out, because if your case is like mine, then you will need to go on lower doses. If it is not like mine, then full doses will work.

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gemofnj
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In what instance can lyme kill? If it is left untreated?

What would be the signs of it being terminal??organ failure??

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Clint31
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quote:
Originally posted by Tincup:
Sorry to hear about your neighbors. A tragedy for any reason.

Some cases diagnosed as ALS can be Lyme disease. Each person with Lyme can be affected differently... and an ALS presentation is possible.

ALS is basically a list of symptoms someone has... that the cause and cure is unknown. Some people diagnosed with ALS actually had Lyme disease.

BTW- Lou Gehrig... the condition ALS was named after... was a baseball player back when artificial turf wasn't the surface where most played ball.

Therefore, most people played in the grass. He was also known to be in/play/stay in the Lyme, CT area often.

Hope that helps.

As an avid baseball fan as there is on these boards, I can tell you with assurance that Lou Gehrig never played a game in Lyme, CT.

He also lived in the Bronx.

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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Clint31
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quote:
Originally posted by gemofnj:
In what instance can lyme kill? If it is left untreated?

What would be the signs of it being terminal??organ failure??

Ive learned if you dig around and stick around these boards long enough, some people on here will try to convince you that lyme is going to kill you. Not good. I'll leave it at that

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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pryorka
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Lyme can kill you by:
Destroying your heart (weakening, and swelling)
Encephalitis (brain swelling)
Organ failure
And one kicker people forget about is that the CD-57 cells are killer cells that also fight tumorous cells. So the longer that number is low the higher your chance for developing cancer.

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seibertneurolyme
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NELyme -- This is a link to something I posted on another forum that may interest you.

http://tinyurl.com/6ewplf

Bea Seibert

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Lymetoo
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quote:
Originally posted by pryorka:
Lyme can kill you by:
Destroying your heart (weakening, and swelling)
Encephalitis (brain swelling)
Organ failure
And one kicker people forget about is that the CD-57 cells are killer cells that also fight tumorous cells. So the longer that number is low the higher your chance for developing cancer.

Ditto, ditto.

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

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lymeloco
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Lou Gehrig, played for the Hartford Eastern league under another name for two years.
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Angelica
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I have also heard of one Lyme patient who died while having an bad herx while they were doing an IV.
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nwisser
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My understanding is that Lyme can cause plaques in the brain, dementia, and death, although by then the patient is told that he or she has something else.

--------------------
Just because it' s not nice doesn' t mean it' s not miraculous.
--Terry Pratchett

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Melanie Reber
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Originally posted by Clint31:

Ive learned if you dig around and stick around these boards long enough, some people on here will try to convince you that lyme is going to kill you. Not good. I'll leave it at that

I sure hope this wasn't directed at me, Clint. As I have never tried to convince ANYONE that Lyme WILL kill them.

Have I suggested that Lyme could or has killed? Yes...more than suggested it...I have provided obits, citations, and studies as proof.

However, I would never and have never told or suggested to anyone that it WILL kill them. Nor, have I seen that written here.

Could you please point where this was suggested to you or to anyone else? I would appreciate knowing.

There is a huge difference between offering the facts that tickborne diseases can kill and suggesting that they will kill.

Or

'if you dig around and stick around these boards long enough, some people on here will try to convince you that lyme is going to kill you."

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Clint31
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Come on now, death from lyme is HIGHLY HIGHLY unlikely and that is a fact. You can die from drinking too much water as well.

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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Melanie Reber
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Does that reply mean that yes, the above comment WAS directed at me?
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WIZARD
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Lyme may not "KILL" my husband. He is actively suicidal from the intolerable pain he lives in daily and psych manifestations of this disease.

The end result will be the same, the means may be the only difference. The only reason it hasn't happened yet is due to my never ceasing diligence.

It needs to be said that it is possible. Lyme patients have a high rate of suicide.

Melanie, I appreciate your postings and getting the message out since it is so often swept under the rug. All too often.

Wizard

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Angelica
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The forum at Canlyme.com mentions just losing someone to Lyme disease recently. It sadly does happen.
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Clint31
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Melanie, NO NO NO NO ! I am so sorry.

It wasn't directed at anyone AT ALL the way that I felt n know who made me feel the way that I felt in what I was talking about, but it was not you I know that. I apologize. [Smile]

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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