posted
Does anyone have any experience with Lyme being misdiagnosed as ALS?
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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bettyg
Unregistered
posted
welcome to the board! YES, there are many here with the ALS diagnosis!
i'm going to send you my newbie package of 79 pagees of links, advise, tests, disability, much more including treepatrol's archive of over 1000 good lyme links.
i know tree has info in his link on lyme/als. his link is always at the top of MEDICAL in the sticky/permanent spot there. but it's also after the first couple of ages i'm sending you too.
tree updates regularly and has reorganized his info better.
uping this for the day crew to see your post also.
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posted
I was suspected of having ALS. For years they thought I had autonomic dysfunction, I had heart rate, blood pressure dropping when standing, gastroparesis. but when I got worse, and the weakness was spreading, and more spinal involvement they thought ALS. However, when I went to the specialist for it, they said my symptoms were not constant, they were transient. and because they were not progressing fast, they said it was not ALS. Thankk God! I still worry sometimes tho.
Posts: 615 | From maryland | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
There are so many threads on it that would head would spin reading them all! Here's a few for starters. Do a search (see the search box on top). I'll start you off as I can't copy the search results in their entirety. VERY common misdiagnosis, probably right up there with Lyme/MS.
posted
Thanks for sharing your info. and experiences! I am going to read all of the info. from here.
You all are a great resource.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Girl*)*)!*!
Welcome*)!*))*!)! !)!**)!*)!*!)!!!
I need to put up The ALS/Lyme Page again, I used to web it and it was tons of articles and personal stories relating to ALS/Lyme. I need to reput it up!!!!!!!!!!!!!!!! Sorry it is not up now-
Yes, some people survive ALS/Lyme. I used to co-moderate an old ALS/Lyme group of lots of people and I had some crossover ALS symptoms- but was NEVER diagnosed ALS and didn't haev it- also had Parkie symptoms and am basically a neuro mutt!! But because of those things and webbing the old ALS/Lyme page I know some stuff about it and would be happy to talk preferably during the day West Coast time at 1-831-662-2895.
Those people that I know of who have lived- excepting for one person who survived and prospered with orals- all did IV Rocephin or IM Bicillin (with Babesiosis treatment most of them but not all, the guy with orals it was all). Also Ledum an herb touted as homeopathic has been useful for some people. IM Bicillin is a popular choice because it is safer than IV and less expensive, too.
Many orals abx can make ALS SPEED up. Because of herxing, this can result in tragedy because people don't know if they are herxing or progressing. Certain abx activate TBE viruses. Some are neutral in regard to TBE viruses. Why is this important? TBE viruses can cause ALS and may be a factor in SOME ALS.
Since it has been documented syphilis can cause ALS all by itself in many people just Lyme may be the culprit- I don't know! Syphilitic ALS has been cured with IV penicillin- so make sure you got a syph test, make sure was not overlooked.
Anyway, welcome welcome welcome*)!*! I am glad you are here. Let me know if I can be of any help. I know many people with ALS/Lyme who have lived, unfortunately many dear peopel haven't made it as well. If you at ALL improve with abx you tend to get all the way well is my experience watching from the sidelines- even if the responsivity waxes and wanes at times-
For me I was 18 omnths downhill before I turned around- with progressive muscular weakness leading on my left side, bulbar symptoms, choking when I ate, slurring of my voice, also lots of agony, IBS, FMS, CFS, RLS, TMJ, chronic tinnitus, loss of balance, micorgraphy, chorea in my left hand... ycuk!!
Now I have lived a normal life for years & years- I hope you stay and do well here. People DO make it. I wish everyone with ALS/Lyme made it- I hope you are one who does*)!*)!!!
Do you have a good LLMD>?>!?>?!
WELCOME*)!*! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks, Sarah. I am searching for info for my brother (ALS) and my mother (just diagnosed with Lyme yesterday.) I am working my way through the info. I am getting here. You all are so helpful. I hope you are well. I'm glad you do not have ALS! I think we found a Lyme lit. doc. in NH for my brother. Now I'm searching for one near Charlotte, NC area. Thanks again!
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Darn- you JUST missed a great doc there- Doc J just got railroaded out of town there- he was a good Lyme doc- for a doc go to Seeking Doctors column- there are people who devote themselves to that column who have Master Lists*)!!
YOUR MOTHER having Lyme makes it more likely in my opinion that your brother has something similar as well because there are genetic predispositions in certain genetic tissue types-
AND often men let symptoms slide for years and just attribute them to aging- women are better at seeking help sooner in my experience- men often come to group with late stage diagnoses-
Yes, I am glad I don't have official ALS diagnosis too!!! Some people can make it though- I hope your brother is one of them- I have only seen 1 person do it with orals though- IV or IM seems to be the way to go- the one person who made it was a local guy who JUST got treated for babesiosis wihch also most survivors get treated for in my experience- but NOT all-
it is clear to me IMO that ALS is a cascade effect from variant sources of infection- whether Lyme which has been documented to cause it- syphilis- or TBE viruses- the trick is turning it off-
I and local people I know used Ledum as well as anti-Babs & anti-Lyme tx- it can inactivate TBE viruses which also can cause ALS- and Ledum is not toxic-
I hope you get good doctors- and YOU- I hope you look out for yourself and give yourself as many treats as you can afford of whatever kind helps you- bubble baths- doughnuts*)! new socks!!!Cashmere sweaters! (that's my evil*)! You are being a great sister and a great daughter-
Sincerely, Sarah O.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
sarah,
fyi, i've been in contact with her on llmd names!!
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NEUROBORRELIOSIS (Lyme Neurologic Infection) as a Possible Cause of ALS
edited from an article by Kathy Cavert ... I've been watching ALS research for over 10 years and the following is the best explanation I've seen that offers a cure in the short term, like now. The theory seems sound and those using anti-mycoplasmal meds are seeing positive results. This theory doesn't eliminate other causes/theories such as malformed EAAT2, glutamate excitotoxicity, or mitochondrial DNA mutation. Mycoplasmal infection may work together with other pieces of the ALS puzzle.
JUSTIFICATION: Some people think that ALS is just a variant of Lyme and that they are treating the Lyme spirochete. They are using doxycycline and doxycycline is one of the meds that Prof. Garth Nicolson has been using to successfully treat mycoplasma infections. I think that they are actually treating mycoplasmas. In an initial screening Prof. Nicolson found mycoplasmas in about 80% of ALS patients, so this only applies to a subgroup of ALS. Prof. Nicolson is now doing a formal study with ALS patients using doxycycline. He said that the preliminary results were positive and that fewer patients have died than would be expected in the normal course of ALS.
When mycoplasmas are in the blood they live in and on leukocytes, according to Prof. Nicolson. Mycoplasmas cannot cross the blood/brain barrier on their own, but can be carried across and deposited in the CNS when leukocytes respond to some CNS infection. This explains the coincidence of ALS with CNS infections such as Lyme disease. But many PALS don't test positive for Lyme. The CNS infection may be some other infection. Also, some PALS test positive for enterovirus but many don't. For more info on mycoplasmas
Tinidazole is an anti-parasitic, and mycoplasmas are parasites, so its use makes sense. Tinidazole has not been approved by the FDA because Pfizer has not tried for approval. Pfizer thinks that there would not be enough of a US market to justify the cost. A source for tinidazole is listed below. For more on tinidazole
Prof. Nicolson developed a new mycoplasma test that can be done by his lab, but it takes 10 to 15 working days to get results, if you care to wait. You can get info on their ALS test panel and the order form from the lab at 714-799-7177, ext. 202 (Client Services) or ext. 204 (Brant Blasingame, Lab Director). Contact their website The protocol below is not Prof. Nicolson's, but it is possible that not enough research has been done to identify an optimal protocol.
"On the basis of long-term follow up (from 2 to 22 years) of 175 patients with various syndromes of progressive forms of tick-borne encephalitis (TBE), evaluation criteria of TBE progression are systematized. Two basic forms of disease progression are identified: amyotrophic and hyperkinetic, each of them breaking down into a series of leading syndromes. Important for characterizing progressive forms of tick-borne encephalitis (PFTBE) are the time when the disease began to progress and the pattern of progression as well as its stage and severity. PFTBE are correlated with the acute period syndromes. In long-term follow-up, 68% of patients with PFTBE display transformation of clinical forms of the disease, with the formation of the lateral amyotrophic sclerosis syndrome in the overwhelming majority of these patients".
1: Zh Nevropatol Psikhiatr Im SS Korsakova 1983;83(8):1173-9 Related Articles, Books [Structure of progressiveforms of tick-borne encephalitis]. [Article in Russian] Umanekii KG, DekonenkoEP.PMID: 6414202 [Pub MEd - indexed for MEDLINE]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Maybe somebody posted this already,,,if so I apologize profusely.
A few years ago I saw a study that entailed ALS. As you know,,,IF all 'KNOWN' lymies were tested about 60% would be CDC positive.
This study pointed out ALS patients "100%" test positive for lyme. Quite unusual to say the least!!
My best uncle died of ALS (supposedly)just a couple years before I finnaly 'knew' what was ailing ME. Wish I had known this sooner and trialed abx for him,,,whats the worst that can happen to a fatal dx of ALS???
Strange thing was my uncle lasted twice as long as your supposed to with this,,,also reverse affected. It started worse in legs, for him, I think when normally it affects the upper body first.. Maybe thts why his breathing and eating remained strong till the end!!
FOR SURE research ALS/ lyme cause there IS a BIG cache of things to read!! I only 'wish' I had a link or something for the 100% study. I printed it at the time,,,but dont know where it went from there!! me??--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Just Don, I think you are thinking of the Mattmans statements re ALS but which are not published other than in her own work-
In Chapter 13, page 243 of Lida Mattmans Cell-Wall Deficient Forms: Stealth Pathogens (you can google search for it using Google Books search)
she says that of 18 ALS patients, 18 had reactions to Bb antibodies-
Apart from that is the Halperin citation- which was published in a peer-reviewed journal- *************************************** 1: Arch Neurol. 1990 May;47(5):586-94.
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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