For those of you that have either been misdiagnosed with or believed you had ALS; what was the result, symptom, doctor consult, ... that changed your mind? I am on the verg of a ALS diagnosis after 1.5 yrs of testing by a neurologist. Being an avid outdoorsman and being only 31 I have other suspisions (hopes!).
I read through some of the posts regarding twitching and Magnesium and I have very similar symptoms to many of you (muscle weakness, twitching and cramping); unfortunantly, they are also very common to ALS. Thus my dilema!
I am really interested in what other "ALS-symptom-suffering-lyme-patients" have done to prove their Lyme infection and what efforts they had to go through.
Thanks!
Posted by SForsgren (Member # 7686) on :
I would certainly get an IGenex Western Blot and co-infection testing. If any of those show anything, you can add more weight to the argument. I would think that the odds are in your favor of having Lyme.
Posted by quaicheng (Member # 8392) on :
ALS is a -trophy- diagnosis. Mine came after a 45 minute exam. I am sure the Nuero does not know thing one about Lyme as my area is not yet CDC Lyme approved. I do travel and may have aquired my Lyme away from home.
I would run like lightening away from your Nuero and don't look back. Clowns I can handle, even drunk scary traveling circus clowns. But Nuero's? Nope.
Nuerology in the US suffers from antiquated data, large deposits from big Pharma for one-cell-at-a-time-research. They are healing no one fast. It's how the US became the 70th in quality per dollar health care country in the world.
Find an LLMD and get the right tests. Do not even discuss it with Mr.Kneewacker.
I was DX/? ALS in July with speech impairment, weakness, atrophy, eyesight issues, bad breath, twitching etc...5 MD's got their chance at me. They all REALLY CARED, but none impressed me with THEIR brains.
my western blot was + in every way the CDC requires, I remembered the bite and rash after the Nuero flunking. I have co-infections and a Bart matza ball of "tick soup". My big $ says you do too.
My antibiotics and regimen are doing the trick. I herx'd like crazy the first 4 weeks and began to have relief in my throat and legs quickly.
If it were'nt for this website, I would still be wondering.
Qaui
Posted by quaicheng (Member # 8392) on :
Sorry, but the thought of 1.5 years of "testing" is perfectly inexcusable.
That Nuero is milking a cash source of unknown origin. At your healths expense.
GEt your LLMD visit scheduled.
Quai
Posted by just don (Member # 1129) on :
Sure wish I would have known then, what I now know about lyme. years ago my dear best uncle was dying of ALS (maybe). I already had problems but was still getting the duck run around and not yet self diagnosed with lyme. He was non typical ALS and lasted along time past when all other ALS patients had passed on, time wise. Also started in other half of his body than typical ALS. I am beginning to believe he 'might' have had lyme instead. What is really troublesome is he was in hospital for pneumonia. Was feeling pretty good. Ate his breakfast one morning like usual and by that night he was gone. I still think it was morphine induced and a deal made between his duck and uncles wife. We shall never know now!!! But now and even then I now know I have lyme and alot of similiar issues. The real scarry part is there is a definite herridty link to alot of relatives on that side of the family tree that have acquired the dreaded ALS. In fact a vast majority. Even tho I am still --just don--
Posted by GiGi (Member # 259) on :
Most patients that come to my doctor with an ALS diagnosis from elsewhere, usually have Lyme. Most of the time though they have multiple infections, have a problem with other toxicities, viral overload, parasites, heavy metals and chemicals. Most often they have dental infections where the microbes then tend to hang out. No one that I have met with that diagnosis got well with Lyme treatment only. It takes a multiple approach without question.
I had to take that approach and got well. Do get tested.
Good luck and take care.
Posted by David95928 (Member # 3521) on :
In my opinion, Steve is correct that it is far more likely you have Lyme or a combination of vector borne infections. It seem to me that you have little to lose by pursuing treatment and seeing if it helps. Bear in mind that if you go that route, it may take quite some time to see any improvement. In the mantime, you may suffer heavy Herxheimer reactions. I'll be thinking of you. David
Posted by Mathias (Member # 5298) on :
No way it takes 1.5 years to dx ALS!!
Unfortunately they are just waiting for you to have enough widespread nerve damage to fit into that box.
Get to an LLMD ASAP!!
I second GiGi's comments. I had two infections: lyme and mycoplasma and it was the mycoplasma that was in my CNS and responsible for my ALS symptoms.
I was also only 32 when the symptoms hit. Very young for ALS but none the less the "ducks" tried to dx me with it anyway.
Posted by JillF (Member # 5553) on :
Your age really says it all. I'm sure there are rare occassions of a young 30-something getting ALS but I doubt it's that common.
Go see a LLMD before you get any worse.
Twitches, muscle spasms, muscle weakness and problems coordinating my legs were the first real symptoms that got my attention. I went to a neurologist because I was really concerned (type that in google = ALS) and he just laughed at me. I have Lyme and two co-infections.
Thank you all for your replies. I have had the bowen test run with a result of 1:128 for Bb. Also I have had the Igenex Western Blot run and I was equivical for the two CDC bands and thus equivical for the result. I am currently waiting results of furthur Igenex testing taken by a LLMD. I hope to know the results of these tests by next week.
What co-infections should I also be tested for? I was tested for one of them; however, I can't remember which one.
Those of you who have experience weakness; have you been able to regain strength or range of motion since being treated?
Lastly, I belive that my dr is going to have a pickline placed in me for IV rocepherin (SP?). What can I expect from this abx?
Posted by lymeloco (Member # 7192) on :
I had the ducks tell me I had everything under the sun BUT lyme despite markers, but hadn't heard of the two things above.
Thanks!
Posted by SForsgren (Member # 7686) on :
At a minimum, I would get tested for
Bartonella Ehrlichia (HGE and HME) Babesia microti and WA-1 depending on where you live (more likely on west coast) Mycoplasma fermentans
Posted by JillF (Member # 5553) on :
I was tested for Babesia and Bartonella. Postive for Bart, negative for Babs and Lyme.
I'm being treated for all three.
Lyme is a clinical diagnosis since the testing is inaccurate. The tests for Babesia can only detect 2/15 strains, I believe, so it was no shock to my LLMD that I tested negative.
Posted by vachick (Member # 8353) on :
Got Lyme, Did you receive an EMG test? What exactly was it that led the neuros to believe you have ALS vs other conditions? It is a bit hard to believe that it has been 1.5 years and they don't have anything conclusively diagnosed. Typically ALS progresses pretty darned fast I believe. Did your symptoms start 1.5 years ago?
I have thought I have ALS for the past three months...I was convinced I had it in fact. Still not sure. However, my neuro told me to cross it off my list. I have muscle fatigue and loss of coordination on one side of my body (right arm and leg), twitching and jerking all over, numbness when I exercise in my right thigh, tingling in fingers and toes, muscle wasting and muscle cramping mainly in my right foot.
Perhaps I am headed for an ALS diagnosis as well, I don't know. However, I will ask the neuromuscular doc when I see him in three weeks.
I think you should pursue the Lyme idea...it won't hurt and could likely be the root cause of your issues. Please feel free to PM me if you have any specific questions. I have many of the symptoms you are describing and have had both Lyme and neuro tests.
Posted by Sue vG (Member # 3143) on :
I had been referred to the ALS specialist in my large metropolitan area when *I started improving*.
I'd convinced my GP that if I had ALS I was a goner anyway, so why not humor me and prescribe a few weeks of cipro in case I had mycoplasma. (Already had a negative lyme test so that was not under consideration).
I herxed like crazy (in retrospect) and a few weeks later showed improvement in many areas of my foot-long list of symptoms.
This happened at the end of 2001. I decided that I was going to live, never finalized the appointment with the ALS doc. As my new year's resolution, I made appointments with a biological dentist to have my remaining amalgams removed, and with a naturopath to straighten out my chemistry.
I also started seeing a doctor who treated CFIDS and fibro, the two diagnoses that I did have. Her glutathione/ATP shots made a HUGE difference in my overall pain and energy levels.
I still wasn't right and in August of 2002 she orded a lyme test, which came back CDC positive. Starting on lyme treatment and getting my thyroid straightened out (it always tested normal) are the things that got me back into life.
I'm still symptomatic, but nothing like I was when it looked like it might be the dreaded ALS.
Posted by JillF (Member # 5553) on :
quote:Originally posted by vachick: Got Lyme, Did you receive an EMG test? What exactly was it that led the neuros to believe you have ALS vs other conditions? It is a bit hard to believe that it has been 1.5 years and they don't have anything conclusively diagnosed. Typically ALS progresses pretty darned fast I believe. Did your symptoms start 1.5 years ago?
I forgot about that also. I believe people with ALS live 3-5 yrs only. I can only guess that by 1.5 yrs, you'd be basically invalid now.
My mother has friends who has a friend who *has ALS* and has been suffering with it for more than 10 yrs. I keep asking them to make sure he is tested for Lyme but they say he has been tested for everything and that there is nothing else it can be. 10 yrs? That's not typical ALS. It's sad because he never saw a LLMD.
Posted by Monica (Member # 224) on :
I too have muscle spasms, twitching, pain, weakness in my legs (chiefly the left now although it used to be the right), can't walk without a walker, etc.
However, considering how long I've been sick with LD, if it was ALS I would have been dead and buried a long time ago.
Posted by Nal (Member # 6801) on :
That is very true! People who have true ALS do not live very long. I think I heard that 7 years is the max but thats not always too common either. I so understand your fear though!!! I get that way from time to time too. Especially when the stupid twitches really kick in full force!
Nancy
Posted by lightfoot (Member # 2536) on :
Hi GotLyme?
Why do you suppose Mino might help ALS?? Do you sense an elment of sarcasm there??
BWH researchers detail how antibiotic minocycline delays progression of Lou Gherig's disease
Wednesday, May 4, 2002 Researchers at Brigham and Women's Hospital (BWH) have identified the process in which the antibiotic, minocycline, inhibits the progression of cell death in the brain that causes amyotrophic lateral sclerosis (ALS), a debilitating and ultimately fatal neurological condition also known as Lou Gehrig's Disease. The findings of the study, which was funded in part by a grant from the advocacy and philanthropic group Project ALS, are published in the May 2nd issue of the journal, Nature.
"Building on the knowledge that minocycline has numerous neuroprotective properties, we found the specific steps in which this drug blocks a key trigger of the cell death pathway," said Robert M. Friedlander, MD, of BWH and senior author of the study. "Minocycline is a safe drug that when taken orally reaches the brain, indicating that the drug may provide a new treatment for ALS patients."
In the study, which used mouse models, researchers found that minocycline blocks the release of the cellular protein cytochrome c into the cell's cytoplasm. Once cytochrome c is in the cytoplasm, it is known to activate the enzyme caspase-3. When activated, the caspase-3 enzyme enables cells - especially motor neuron cells in the brain - to commit suicide. Therefore, while minocycline doesn't directly inhibit the cell-killing caspase-3 enzyme, it does interfere with the cell death pathway at an early stage.
Patients with ALS do not experience any cognitive decline, but they do experience progressive physical debilitation including paralysis and motor deterioration. The life expectancy of an ALS patient averages only three to five years following the onset of these symptoms. The cause of the disease is unknown in most patients, although ALS currently affects approximately 50,000 individuals in the United States. The total number of ALS patients continues to grow as nearly 5,000 new cases of the disease are diagnosed each year.
The only proven therapy for humans currently is the drug riluzole, which extends survival in humans approximately three months.
"By understanding the mechanism by which minocycline prevents cell death, we can better target ALS treatment," added Dr. Friedlander. "We now need to test combinations of minocycline and other drugs to create a drug "cocktail" that would be a safe, powerful therapy for ALS patients."
In addition, the study's findings may have implications on more conditions than just ALS. According to Dr. Friedlander, the process which initiates cell death leading to ALS is similar to that in other neurological diseases such as Huntington's, Parkinson's and Alzheimer's diseases as well as injuries such as stroke, traumatic spinal cord and brain damage.
"Minocycline has already been shown to be effective in animal models of Huntington's disease, stroke, traumatic brain injury and Parkinson's disease," said Dr. Friedlander. "Now we know how it works, and this will enable us to develop more effective therapies for these devastating and often untreatable diseases."
The study was funded in part by the Huntington's Disease Society of America, the Hereditary Disease Foundation, the Muscular Dystrophy Association and the National Institutes of Health.
BWH is a 716-bed nonprofit teaching affiliate of Harvard Medical School and a founding member of Partners HealthCare System, an integrated health care delivery network. Internationally recognized as a leading academic health care institution, BWH is committed to excellence in patient care, medical research, and the training and education of health care professionals. The hospital's preeminence in all aspects of clinical care is coupled with its strength in medical research. A leading recipient of research grants from the National Institutes of Health, BWH conducts internationally acclaimed clinical, basic and epidemiological studies.
Posted by lightfoot (Member # 2536) on :
Hi GotLyme? Here is another important piece with a valuable story to tell.... Hope you have a very well qualified LLMD. I wish you the best and bunches of good luck with treatment!! Healing thoughts.....lightfoot
Press Releases FOR IMMEDIATE RELEASE:
ILADS WELCOMES PHYSICIAN RECOVERING FROM ALS
DOCTOR'S CASE SUPPORTS THEORY LYME DISEASE MAY BE THE CAUSE OF ALS
Bethesda MD September 2, 2004 -- The International Lyme and Associated Diseases Society (ILADS) strengthened its impressive membership today with the addition of Dr. Dave Martz of Colorado Springs, who joined ILADS 15 months after being diagnosed with Amyotrophic Lateral Sclerosis (ALS). In April of 2003, Dr. Martz began suffering weakness and pain in his muscles. Dr. Martz soon lost much of his mobility. His condition worsened forcing him to retire from the medical practice he loves.
After six frustrating months with hope fading, Dr. Martz discovered the work of Dr. Gregory Bach of Colmar, Pennsylvania. Dr. Bach, who is a member of ILADS, suggested a link between ALS and Lyme disease. IGeneX Reference Laboratory of Palo Alto then confirmed Lyme bacteria in Dr. Martz's DNA. Dr. Martz then sought out a local ILADS physici an who started Lyme disease treatment based on the recommendations of Dr. Bach. The results were dramatic.
``Before I found Lyme ``literate'' professionals, I could only function at a level of about 20 percent,'' says Dr. Martz. ``But now that I'm in expert hands, I am up to 75 percent of full function and I hope to return to work soon as a physician, helping others with Chronic Lyme Disease.'' An internist, and Past President of the Colorado Medical Society, he is committed to giving others opportunities that have been given to him.
The Centers for Disease Controls says that Lyme disease may be under-reported by as much as ten-fold. This means as many as a quarter of a million Americans may contract Lyme disease each year, yet most of them are unaware of it. ILADS will hold its annual meeting in October of this year in Rye, New York.
ILADS president, Dr. Steven Phillips, says, ``Dr. Martz is an example of the many physicians and medical experts we encourage to join ILADS so we can continue to raise awareness and make vital advances in the world-wide fight against Lyme disease.''
For more information about Lyme disease go to www.ilads.org
CONTACT Barbara Buchman (301) 263-1080 Christi O'Connor (415) 883-2491
Posted by lou (Member # 81) on :
Couldn't be that minocin is inhibiting an infectious agent causing ALS, could it? Of course not, what an idea!
However, it has not stopped me from developing muscle wasting.
Posted by GotLyme? (Member # 8485) on :
Thanks again for all of the replies. I have had EKG testing done for the past 1.5 yrs. The testing has showed a progression of abnomalities in nerve conduction which started in my lower right leg and has progressed into the rest of my body. My neuro said this is the same progression as ALS; however, the rate is outside the norm (i.e., much slower progression than the average ALS) also my neuro has commented that due to my age (31 yrs) she is also concerned about an ALS diagnosis. Basically if I were 10-15 yrs older I would have the ALS diagnosis.
My neuro is confident after all of the testing she has done (including a Western Blot and Eliza) that my symptoms are not the result of an infectous agent.
I am pursuing treatment with a LLMD who is going to treat me with IV rocephrin for 30 days in hopes that I have a Herx to confirm the diagnosis.
Posted by David95928 (Member # 3521) on :
It sounds like your LLMD has a plan. Bear in mind that not everyone herxes, but you probably will.
Posted by johnnyb (Member # 7645) on :
quote:Originally posted by GotLyme?: For those of you that have either been misdiagnosed with or believed you had ALS; what was the result, symptom, doctor consult, ... that changed your mind? I am on the verg of a ALS diagnosis after 1.5 yrs of testing by a neurologist. Being an avid outdoorsman and being only 31 I have other suspisions (hopes!).
I read through some of the posts regarding twitching and Magnesium and I have very similar symptoms to many of you (muscle weakness, twitching and cramping); unfortunantly, they are also very common to ALS. Thus my dilema!
I am really interested in what other "ALS-symptom-suffering-lyme-patients" have done to prove their Lyme infection and what efforts they had to go through.
Thanks!
GL,
I believe my non-LLMD neurologist was figuring I have MS, and is just waiting for enough symptoms to develop before giving the official diagnosis. However, since I know the symptoms developed after a tick bite, and I have very lyme-specific bands in my WB, my LLMD is treating me with ABX.
The neurologist seemed surprised when I mentioned that my numbness / tingling has gone away after a few months of ABX. since my IGG was pos, but IGM was indeterminate, he still isn't convinced that it's lyme, but he does want to repeat my MRI after I am done with the ABX. He feels that 3 more months is more than enough.
I don't even debate it with him. My LLMD knows best....
- JB
Posted by Mathias (Member # 5298) on :
Were any sensory nerve abnormalities found on the Nerve Conduction Studies? Do you have any sensor problems (burning, loss of feeling, etc.)?
What were the EMG findings? EMG findings are usually more improtant that NCV's in making an ALS diagnosis.
This is a good site on EMG's and NCV's. It may easy your mind a little bit.
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