It may sound stupid, but I'm scared of my lyme disease turning into ALS. I know it may be a whacky theory someone or many someones have conjured up.
I continue to get more and more worried as my healing process hasn't been as quick as I thought it would. I started ABx on 7/7 the day I was diagnosed with lyme. I have had some improvement but still have some muscle aches and muscle twitches. Just really worried and terrified of ALS. I'd rather have lyme forever than ever develop ALS
I'm just looking for people to tell me that its not true.
posted
That's what I was told by Dawnee here on the board and my Neurologist. I get twitches and body jerks (haven't for a while - knock on wood) also.
I heard that the weakness comes first and I don't have any weakness anywhere. I might get pins and needles feelings in my hands but I never drop anything. I never feel like they are weak, they still do what I want them to do.
Even though my neck is one my biggest complaints, I can swallow and breath just fine.
However, because I've had so many health scares (or health issues that scared me actually), getting scanned for ovarian cysts or masses, then straight to the bug bite/swollen lymph node, then to my neck going weird, then all of the other Neuro Lyme sx coming in...I've turned into quite the hypochondriac about everything.
I understand your fear and they found a swollen lymph node in my neck (my LLMD did) but I did have 2 ear infections and a sore throat...but I keep thinking about it!
Even though I've had one removed and biopsied, no cancer. I keep thinking, "What if they missed it?"
UGHHHH. I remember the days when I didn't realize I had a body. I just LIVED. Ignorance was bliss.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I have no official research to back it up but I believe UNDIAGNOSED and UNTREATED Lyme and Coinfections can lead to ALS.
Not the people who catch and are treating it...so the diagnosis and treatment is the "blessing".
posted
I understand your concerns. Many of my symptoms seem to fit the ALS symptom description - twitching, weakness, fatigue, stiffness... etc... It's easy to go from thinking logically that yes, you have tested positive for Lyme and know you have it and are being treated and most likely are herxing, after all Lyme can mimic ALS, to thinking that maybe this is something else... maybe this is ALS in ADDITION to the Lyme, or maybe this will turn into Lyme. I spent alot of time worrying my Lyme would turn into ALS, but then I realized I could also spend a lot of time worrying I would get killed in a car accident tomorrow... or die of pancreatic cancer like my brother... there's a lot to worry about. Let's not waste our time on "what ifs" Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
In my case ....yes. but with lyme tx my ALS symptoms are going away....slowly
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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adamm
Unregistered
posted
Go to lymecryme.com--they hawve some info on it.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have weakness in my arms and can't hold things for very long, like a glass or a pencil. I also have periods of difficulty swallowing, but I know it is from the Lyme. Don't waste energy and stress yourself on "what ifs".
These are symptoms of Lyme disease and if you improve with treatment, then it is LD. ALS progresses very quickly.
You would know within a year if it was ALS. Most people with ALS would be in a wheel chair within a year and usually only live about 3 to 5 years, during which time they become complete invalids and cannot breath without machines.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Sutherngirl- I have weakness in my arms and hands as well along with lot's of twitching all over. Have been on antibiotics (this round) for three weeks. Is this a usual symptom? How long have you had Lyme and are you on antibiotics? Maybe a herx reaction? Have had EMGs and MRIs in the past to rule out ALS and MS bc of the twitching. The fatigue/weakness is new though and seems to be related to some stiffness or arthritis. Whole body hurts basically. Thanks. Posts: 144 | From Connecticut | Registered: Sep 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I have had the severe twitching for 11 years and it has not progressed to anything even closely resembling ALS. However, it was something that I feared at one time. If you are being treated for Lyme and don't have any significant symptoms of ALS, I would mention your fear to your LLMD and then hopefully they can help you let that one go. The more fear we have, the more likely we slow our LD treatment in my opinion.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Don't be scared, I think what they are saying is if you don't get treated and it keeps progressing to the point that you are severely impaired etc... it could take the path of ALS. If you are treated however, it should be reverseable. Am I correct here people?
Posts: 144 | From Connecticut | Registered: Sep 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Treat the infection aggressively with the help of a competent LLMD and you'll find ALS won't be an issue, just like Crohn's Disease, Fibromyalgia, Chronic Fatigue, MS -- most of these diseases, when treated accordingly for Lyme Disease or co-infections, often disappear over time.
Lyme Disease "is" one of many causes for some of these "incurable and unknown etiology" diseases.
People often say "Well, if you are diagnosed with MS, but then find out it was Lyme, then you were misdiagnosed. That isn't true. MS is merely a symptom parameter, a pattern identified and labeled.
If we discover Lyme Disease causes a portion of those cases which can't be distinguished symptomatically or in terms of progression -- then the fact is, Lyme is "One of the causes" and anyone with MS, should consult a physician in tick-born illness to rule out or rule in whether that applies to their situation.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Don't allow the ALS talk to frighten you...Just as there are no definitive tests or certainties with what modern medicine knows about Lyme, there are also NO definitive studies that show that Lyme leads to ALS. There are theories, but at this point that's all they are.
Common sense tells me that if you improve on abx treatment, it is Lyme and not ALS. From everything I've read, seen, or watched on the topic of ALS, it is a disease that has a rapid regression with no improvements or "remission".
Listen to those who tell you that if muscle twitches without muscle atrophy or weakness is what you are experiencing [I am as well], then odds are very high that you don't have ALS. And if you improve on abx, that even goes further in proving that ALS is not what you have.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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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]
[Don't think they are correct that CSF results are infallible.]
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]
Posts: 983 | From The sky | Registered: Feb 2005
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quote:Originally posted by CraigC: Don't allow the ALS talk to frighten you...Just as there are no definitive tests or certainties with what modern medicine knows about Lyme, there are also NO definitive studies that show that Lyme leads to ALS. There are theories, but at this point that's all they are.
Common sense tells me that if you improve on abx treatment, it is Lyme and not ALS. From everything I've read, seen, or watched on the topic of ALS, it is a disease that has a rapid regression with no improvements or "remission".
Listen to those who tell you that if muscle twitches without muscle atrophy or weakness is what you are experiencing [I am as well], then odds are very high that you don't have ALS. And if you improve on abx, that even goes further in proving that ALS is not what you have.
I had a clean EMG In june with no signs of MND/ALS. However, in recent days (and I've been treating lyme with ABx since diagnosis on july 7) I have had a return of what caused my initial ALS fears. Left Foot arch cramping, twitches in that area, left leg aches, and the muscle aches. I am worried that because I've relapsed Im not going to get well and I'm going to relapse and it will turn into ALS or is in the beginning stages of it.
I'm not a physician, but if you just had an EMG in June, and it checked out alright, I wouldn't worry too much. Plus, as stated before, there is a big difference between muscle aches and pains, twitches, etc., and that of muscle weakness and/or atrophy.
My muscle twitches have gone on now for 8 months or so, and I too was once worried about ALS. However, after visiting two different Neurologists, both concluded that ALS or MS is not what I have.
My advice would be to keep monitoring the situation for changes, and notify your physician if any significant changes are detected. Otherwise, don't worry yourself sick over it, because too much analysis can work into paranoia.
Finally, the studies LymeBlue and others have quoted, use a lot of words like "believe", "possibly", etc. As I stated in my post above, there are a lot of "theories" out there, but no acknowledged "fact". I would be interested in knowing why many articles I've read, state that "Lyme is often misdiagnosed as ALS, MS, etc.". If Lyme and the other diseases were not separate afflictions, there would not be different treatments for the diseases [there is no successful treatment for ALS]. If you'll notice, the article LymeBlue quoted suggesting that symptoms of MND were successfully resolved using abx. Seems to me, this is expressive of Lyme and not ALS.
" Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amytrophic laterlal sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.
I wasn't trying to be argumentative, but I just find it rather unfair to scare someone who is obviously very concerned already, with quotes from studies that basically don't prove a thing. If anything, it appears that there is enough evidence to suggest that ALS and Lyme are in fact two different diseases, if doctors are constantly amending their diagnosis when patients improve on abx.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
Having been seen at both ALS clinics in San Francisco I was reassured that my constant muscle twitches (fasciculations) were not ALS related.
One of the neurologists went on to tell me that most ALS patients don't even notice the twitching like I did. It consumed me. I had body wide twitching for 12 months.
One thing that I didn't have was muscle weakness which is a hallmark of ALS. It doesn't get better, it progress's.
Not sure I believe there is a connection between lyme and ALS but I wouldn't rule anything out.
I think anyone who presents with ALS symptoms is always worried. I was for a long time but it's now passed after two full years of treatment. Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I don't think you have anything to be worried about. You had a positive Lyme blood test. What are the chances of getting Lyme and having real ALS (not Lyme disguised as ALS) in the same year? Highly unlikely.
And, didn't you say you had a test done that came back okay? I'm sure you're fine.
If you feel you may be relapsing as opposed to Herxing, try to see that LLMD as soon as you can. Maybe it is time to add something more to your treatment. I wouldn't know, because I'm not an LLMD though.
It will be interesting to get your babesia tests back though (do the test on a day you have chills and all your symptoms are bugging you).
There are a LOT of other avenues to explore before you need to be concerned about ALS.
DON'T WORRY ABOUT IT!
(just so you all know, I am not downplaying ALS or downplaying Cint's condition, but I am pretty familiar with hisindividual situation. I think not worrying about it is the best advice I can give based on all the info presented....so please don't think I'm giving bad advice!)
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm adding something else: I just read that article you posted Clint, and I think you may be misreading it.
The doctor was saying that Charlie's (was that his name?) symptoms were due to a bacterial infection, and only "looked" like ALS.
By the end of the article, he was doing much better due to "massive" amounts of antibiotics.
This should further confirm you have nothing to worry about. Posts: 4590 | From Midwest | Registered: Jun 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Clint: Metallic Blue states everything quite eloquently. I tried to say what he said but I said it in a short sentence.
My same point was, be THANKFUL you've found the Lyme and coinfections and are being treated because I FIRMLY believe that it will PREVENT you from ever getting ALS.
It's the unfortunate people that NEVER get diagnosed or proper treatment that may end up in that tragic predicament.
Everything we're doing right now is to PREVENT this from happening and I can tell you that everything I've done to treat these tick borne illness' have only GREATLY IMPROVED my quality of life.
There is a period of time when it does not feel like you are getting better...even like you're getting worse but that is the process. Herx, clear, herx, clear until one day the herxing, symptoms and hell will stop or, at the very least LESSEN to a heightened degree.
Scott is right that you cannot focus on negative things like ALS if you want to get better. Focus on how blessed you are to have the proper diagnosis and treatment and just save your energy and strength to get through the daily treatment which is hard enough.
You MUST have hope and I can tell you that since being treated my symptoms have only gotten better. It just takes time and faith.
Don't worry. I know what you mean...sometimes I worry about ALS, MS, etc...and whether my lyme might induce these things.
But then I remind myself that the connections that studies seem to show between lyme and some of these diseases is really just that lyme is being misdiagnosed as these other disorders, NOT that lyme caused these disorders to occur.
In Pamela Weintraub's book "Cure Unknown", there was a man who was diagnosed with ALS and was on a quick decline.
Doctors felt he wouldn't live much longer. One doctor decided to try antibiotics and he started getting better.
In the end, he didn't ever have ALS...it was just very, very advanced lyme. He eventually completely recovered.
So, try not to worry. If you really think about it, those of us on lymenet are the LUCKY ones!
It's all those hundreds of thousands of individuals out there who don't know they have lyme and may NEVER get an accurate diagnoses and/or treatment that are in truly bad situations.
Lymer
Posts: 63 | From Humboldt County | Registered: Jul 2008
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Dawnee
Unregistered
posted
From what I have studied, ALS and Lyme ARE two different diseases. With a lot of the same symptoms.
With ALS you get the muscle weakness and wasting before you get the twitching.
And by muscle weakness...I mean if you were in the road and a car was coming at you, your muscles would be so weak you couldn't move whatever affected limb it was to get out of the way. And once you get weakness..it doesn't get better. If you get weakness and and days later it lets up and you regain the strength...it is NOT ALS. This is what I have been told by "experts" on ALS.
Like you, I was TERRIFIED of ALS. Before I knew I had Lyme I did my searches online for muscle twitching and came up ALS..ALS...ALS. And THAT fear landed me in bed Fa-REEEEAKK- ing OUT! And the stress brought out even more Lyme symptoms as well.
I had an EMG done on only my right arm, as Id had weakness following a lot of yard work and using my right hand to hold a shovel for a long period of time. EMG was normal.
I still freaked.
I finally found a forum of people with supposed "begnign muscle twitching " syndrome or some such thing. Begnign something or other. Anyways, everyone on that board was terrified of ALS..like me. And that is where I got most of my ALS facts... like the twitching comes well after severe atrophy and muscle wasting/weakness.
I have whole body muscle twitching. My LLMD says it's from Lyme and Co. I, honestly, do not believe that Lyme can "turn into" ALS. ALS is pretty classic in how it progresses.
I have been twitching for four years now. It started when I was at my worst with Lyme. It is body wide twiching that moves around.
Like I said in one of your other posts I also have more twitching, cramping, and vibrating in my left calf and foot. It was so bad when it first started I freaked myself out over ALS & MS.
These symptoms have slowly gotten better over the years but I do still have a twitch here and there every day.
I have no muscle weakness at all. I even do an hour of yoga several days a week and have been for a couple years. I wouldn't be able to do this if it was ALS.
I know it is very hard once you have yourself this freaked out but, it will do yourself alot of good to try to let this go.
Once I was finally able to let this go and relax a little, I started to feel alot better all around and my body was able to fight Lyme better.
Hope you start feeling better soon and hang in there,
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