posted
I have just recently been diagnosed with ALS and I have read numerous places where people were incorrectly diagnosed with ALS and actually had Lyme disease which I have read is treatable. I understand that the disease can be hard to diagnose and I am looking for advice on where, or who is very good at diagnoising this disease. I live in Las Vegas, NV.
How common is it to misdiagnosed with ALS and it is Lyme disease.
Posts: 4 | From Las Vegas | Registered: Jan 2008
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
It happens!!! We have had 4 people with ALS in our local group, 3 have lived but they did very specific things. The people who survive ALS Lyme all tend to do IV Rocephin or IM Bicillin. I have only known ONE person with ALS/Lyme who survived on oral antibiotics- some orals can speed up progression of ALS/Lyme- in my non-MD opinion it is better NOT to do ANY orals with ALS/Lyme (orals can send TBE viruses into hyperdrive which is what seems to happen with subset of ALS- TBE stands for Tick borne encephalitis viruses- we DO have them in the USA- Powassan, DTV). Call me any west coast daylight hours at 1-831-662-2895 if you want. I hope you have a good lyme doc.
I am not a doctor but a support group leader from CA.
If I were you I would do the herb Ledum Palustre-the herb itself not a homeopathic infusion- there is some evidence ALS can be caused by TBE viruses and ledum can inactivate TBE viruses.
I had MS, Parkie & some ALS symptoms myself but am a neuro mutt. I am 100% symptom free but stay on maintenance abx. Everyone locally with ALS Lyme has had to stay on maintenance abx!!! But have gotten better-
The people who have lived lcoally all got treated for Lyme with IV or IM and did ledum and ALSO were treated longterm for BABESIOSIS. Babesiosis makes the body very acidic. TBE viruses are ph mediated by adidity. Thus it makes sense those people would be coinfected...
There is also a theory that Acamprosate, a cheap drug meant for alcoholics, could help ALS by stopping the calcium cascade that could be responsible for some symptoms. It is a furin blocker...
WELCOME TO LYMENET*)!*! !&*)!*)!*)!*)!*)!*)!)*!
If you are very advanced your chances are not so good- if you have just been diagnosed you have a much better chance!!! but yes, there IS hope! Best wishes, Sarah
p.s. there is a ALS free one year of Rocephin study going on right now- one year of free Rocepihn- or placebo (scary). But it is a way to get 1 year free rocephin (unless you get placebo)!!! See the study here:
This is the link for the IV Rocephin trial not to another forum. FREE one year of Iv Rocephin- or placebo unfortunately- but better than nothing & better than oral abx for ALS- ************************************************** *
Information source: National Institute of Neurological Disorders and Stroke (NINDS) Information obtained from ClinicalTrials.gov on October 22, 2007 Link to the current ClinicalTrials.gov record.
Condition(s) targeted: Amyotrophic Lateral Sclerosis; ALS
Intervention: ceftriaxone (Drug)
Phase: Phase 3
Enrollment status: Recruiting
Sponsored by: National Institute of Neurological Disorders and Stroke (NINDS)
Official(s) and/or principal investigator(s): Merit Cudkowicz, MD, MSc., Principal Investigator, Affiliation: Associate Professor of Neurology, Harvard Medical School, Massachusetts General Hospital Jeremy Shefner, MD, PhD, Affiliation: Professor of Neurology, State University of New York, Syracuse, Co-Investigator Allitia DiBernardo, MD, Affiliation: Lecturer in Neurology, Harvard Medical School, Massachusetts General Hospital, Co-Investigator
Summary The purpose of the study is to evaluate the safety and efficacy of ceftriaxone treatment in amyotrophic lateral sclerosis (ALS).
Clinical Details Official title: Clinical Trial Ceftriaxone in Subjects With Amyotrophic Lateral Sclerosis (ALS)
Study design: Interventional, Treatment, Randomized, Double-Blind, Placebo Control, Safety/Efficacy Study
Primary outcome: Survival.
Secondary outcome:
ALSFRS-R vital capacity
evaluation of multiple upper extremity muscles using hand held dynamometry
quality of life
long-term safety and tolerability of ceftriaxone.
Detailed description: It is known that nerve cells called motor neurons die in the brains and spinal cords of people with amyotrophic lateral sclerosis (ALS). However, the cause of this cell death is unknown. Researchers think that increased levels of a chemical called "glutamate" may be related to the cell death. For this reason researchers want to study drugs that decrease glutamate levels near nerves. Ceftriaxone--a semi-synthetic, third generation cephalosporin antibiotic--may increase the level of a protein that decreases glutamate levels near nerves. Studies of ceftriaxone in the laboratory suggest that it may protect motor neurons from injury.
Ceftriaxone is approved by the U. S. Food and Drug Administration (FDA) for treating bacterial infections but not for treating ALS. Also, ceftriaxone has not been given to people over a long period of time, such as months or years. The goals of this study are to evaluate the safety and effectiveness of ceftriaxone as a treatment for ALS, and to determine the safety and effectiveness of long-term use of the drug in people with ALS.
A total of 600 eligible people with ALS will be enrolled in this multi-center research study. Participants will be randomly assigned to receive treatment with ceftriaxone or placebo for at least 12 months. The study consists of three stages. The first stage will find out if ceftriaxone enters the cerebrospinal fluid (fluid that surrounds the spinal cord, also called CSF) in amounts that are high enough to be of possible benefit. The second stage will look at the safety and side effects of the study drug when taken daily for 16 weeks. The third stage will try to find out whether the study drug helps people with ALS live longer. Sixty participants will take part in stages 1 and 2 and will continue on to stage 3. An additional 540 participants will take part in stage 3.
Duration of the study for participants varies from 1 to 5 years, and may include up to 70 site visits.
Eligibility Minimum age: 18 Years. Gender(s): Both.
Criteria:
Inclusion Criteria: - Participants will be people with ALS, at least 18 years of age.
- Participants must be medically able to undergo the study procedures and have a caregiver or other individual who will be available to help with daily study medication administration.
- Participants should live within a reasonable distance of the study site, due to frequent study visits.
Exclusion Criteria:
- Participants cannot be taking any other experimental medications for ALS, or have a history of sensitivity to cephalosporin antibiotics (such as Ancef, Keflex, Ceclor, Ceftin, Lorabid, Suprax, or Fortaz).
California Pacific Medical Center, San Francisco, California 94115, United States; Recruiting Dallas Foreshew, RN, BSN, Phone: 415-600-3938, Email: [email protected] Jonathan Katz, MD, Principal Investigator Emory University, Atlanta, Georgia 30322, United States; Recruiting Meraida Polak, RN, Phone: 404-778-3807, Email: [email protected] Jonathan Glass, MD, Principal Investigator
University of Chicago, Chicago, Illinois 60637, United States; Recruiting Elizabeth Shaviers, Phone: 773-702-6221, Email: [email protected] Kourosh Rezania, MD, Principal Investigator
Indiana University, Indianapolis, Indiana 46202, United States; Recruiting Sandy Guingrich, Phone: 317-630-6103, Email: [email protected] Robert Pascuzzi, MD, Principal Investigator
Massachusetts General Hospital, Boston, Massachusetts 02114, United States; Recruiting Darlene Pulley, Phone: 617-726-6190, Email: [email protected] Lisa Krivickas, MD, Principal Investigator
Washington University, St. Louis, Missouri 63110, United States; Recruiting Julaine Florence, PT, Phone: 314-362-6983, Email: [email protected] Alan Pestronk, MD, Principal Investigator
SUNY Upstate Medical University, Syracuse, New York 13210, United States; Recruiting Mary Lou Watson, RRT, Phone: 315-464-5004, Email: [email protected] Francine Vriesendorp, MD, Principal Investigator
Wake Forest University, Winston-Salem, North Carolina 27157, United States; Recruiting Theresa Johnston-Crews, RN, Phone: 336-716-2323, Email: [email protected] James Caress, MD, Principal Investigator
Carolinas Medical Center, Charlotte, North Carolina 28203, United States; Recruiting Lien Ngo, Phone: 704-446-6253, Email: [email protected] Elena Bravver, MD, Principal Investigator
Methodist Neurological Institute, Houston, Texas 77030, United States; Recruiting Valrie Bickley, Phone: 713-441-5192, Email: [email protected] Ericka Simpson, MD, Principal Investigator
Additional Information
Northeast ALS Consortium website
Starting date: July 2006 Last updated: October 11, 2007
-------------------- 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
I live in Vegas, there are no LLMD's here.......The closest are in S. California. We travel there. However there is an MD here at the Fibro clinic that works with the LLMD we see in CA.
She believes there is Lyme here and can run the test, which would be the Western Blot and send it to IgeneX.
She is a Fibro specialist but she will test for Lyme willingly. You just need to ask her to do it.
If you want her name and phone number, PM me and I can give it to you. She is very good.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
I am sorry that you have been diagnosed with ALS. It is a devistating diagnosis.
Did your diagnosis include a bad EMG? My brother was diagnosed with ALS 1.5 yrs agoat age 40.
They made him do the EMG before they gave the official diagnosis. It was "not clean".
He is now in a wheelchair. He was also recently tested for Lyme and tested IGG positive by Igenex criteria.
However, it is very difficult to find a doctor who will treat an ALS/Lyme patient in a wheelchair with IV rocephin.
Dr. D in boston won't even do it even though he told my brother flat out that he had Lyme and ALS.
Dr. J in SC said he would treat him, but my brother can't make the trip and stay long enough for follow up.
Are you in a wheelchair yet? Don't wait. Find someone who will do the Igenex western blot.
If it is positive get to one of the best LLMDs you can find while you can travel.
My brother lives near Boston, so he is in the process of entering the ALS rocephin study at Mass. General Hospital. PLEASE DON'T WAIT.
read this presentation by Dr. M - a doctor who recovered from ALS/Lyme with IV rocephin and orals for coinfections. (I'm not sure if he had a bad EMG as part of his diagnosis.)
This is his presentation to ILADS. If you google it you can get it in the original format.
This post will not permit me to include the 25 pages of this presentation. Good luck.
ALS and Lyme: RMCDS Experience ILADS October 21-22, 2006 Acta Neurol. Scand., 2006
Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy
Harvey WT, Martz D.
Abstract
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.
-------------------- 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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-------------------- 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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posted
The above link to Dr M's ALS/Lyme presentation to ILADS now works. Sorry it took so many tries.
-------------------- 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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Just some encourgement, my LLMD, one of the best told me that believes that many cronic conditions come from (Lyme or similar infection) (ALS, MS, Parkinsons, Fibro M).
They are caused by somthing but he has treated all for above Dx with negitive tests that got better after treatment. Not all 100% but better.
All are also diagnoised Clinicaly and not through a simple test- leaving room for error and judgement.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
do you have to have necessarily a bad emg to get the ALS label?
My EMG made 2 years ago is normal and I had already part of the symptoms I have now, only now they are worse and I have a lot more but no Dr will give another emg because they say that one is still valid. (for now they say it anxiety, jesus, I should be a total nutcase for my anxiety to do all the stuff I suffer from)
Posts: 75 | From europe | Registered: Mar 2007
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My brother's neurologist did not officially diagnose my brother with ALS until the EMG since his original presentation of the disease was a little atypical.
The bad EMG pretty much sealed the deal.
However, I think many doctors still use the ALS or ALS-like diagnosis based on the presentation and symptoms even without the bad EMG.
I think an ALS diagnosis without the bad EMG would make me want to explore EVERY possibility for the symptoms (especially Lyme).
Even with the bad EMG my brother checked into the Lyme connection. He did test positive.
-------------------- 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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posted
Oh I know I have lyme and not the classic als, it's just that, if I got it right, a bad emg means motor neuron involvement, and if that is the case, it is much trickier to treat, am I right?
Posts: 75 | From europe | Registered: Mar 2007
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posted
A person with Lyme and a bad emg suggesting motor neuron disease would most likely need to be treated with IV rocephin along with possible IM and/or orals.
I do not think orals alone would help much.
A good LLMD with experience with patients with motor neuron disease can help in this determination.
-------------------- 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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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
The El Escorial criteria is utilized to diagnose ALS. EMG/NCV studies are critical to that diagnosis.
REQUIREMENTS FOR THE DIAGNOSIS OF ALS The diagnosis of Amyotrophic Lateral Sclerosis [ALS] requires: A - the presence of: (A:1) evidence of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
(A:2) evidence of upper motor neuron (UMN) degeneration by clinical examination, and
(A:3) progressive spread of symptoms or signs within a region or to other regions, as determined by history or examination,
together with
B - the absence of: (B:1) electrophysiological and pathological evidence of other disease processes that might explain the signs of LMN and/or UMN degeneration, and
(B:2) neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
ALS with Laboratory Abnormalities of Uncertain Significance (ALS-LAUS) must meet the clinical, electrophysiological and neuroimaging criteria for Clinicially Probable or Clinically Definite ALS. ALS-LAUS have laboratory-defined features which may be relevant to the development of the ALS phenotype.
In some patients correction of the associated abnormality may result in alteration of the disease course.
Such patients need special consideration in the context of research studies.
ALS with Laboratory Abnormalities of Uncertain Significance (ALS-LAUS) Syndromes
ALS-LAUS includes patients with Clinically Definite or Clinically Probable ALS associated with:
(1) Monoclonal gammopathy monoclonal gammopathy of unknown significance, Waldenstrom's macroglobulinemia, osteosclerotic myeloma, etc.
(2) Autoantibodies high-titer GMI ganglioside antibody; etc.
(3) Nonmalignant endocrine abnormalities hyperthyroidism, hyperparathyroidism, hypogonadism, etc.
(4) Lymphoma (Hodgkin's and non-Hodgkin's lymphoma.) Cases of sporadic ALS associated with cancer of the lung, colon or thyroid and insulinoma, is currently thought not to be causally related to the neoplasm.
(5) Infection HIV-1, HTLV-1, varicella-zoster, brucellosis, borrelliosis, cat-scratch disease, syphilis etc. NOTE: No mention of Lyme Disease, must be too controversial to put that in black and white.
(6) Exogenous toxins eg, lead, mercury, aluminum
This is the website I got this from. I think it is an excellent resource.
Get started on treatment right away. Get tested for all co-infections as well (Babs, Bart, Myco, etc.). Improvement will not be realized unless all are treated.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
[QUOTE] 5) Infection HIV-1, HTLV-1, varicella-zoster, brucellosis, borrelliosis, cat-scratch disease, syphilis etc. NOTE: No mention of Lyme Disease, must be too controversial to put that in black and white.
If I'm not mistaken, borelliosis is lyme disease.
Posts: 136 | From North Carolina | Registered: Apr 2007
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posted
It is, wow, not bad, things are starting to filter through slowly, only problem: to exclude lyme they probably give you one of those useless serologies...
Posts: 75 | From europe | Registered: Mar 2007
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
You are right, my bad.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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