I wondered if anyone here can tell me if they have dealt with a misdx of ALS, and if they were treated for lyme and gotten better?
A family member of mine may have ALS and has been very sick, they are testing for lyme but test results have not come back yet.
I wondered what the most affective treatment was used...IV, orals, etc. and how quickly the turn around was...She took sick really quickly...I'm really hopefull that it is lyme and not ALS, as the ALS treatment is not working.
Any input would be appreciated. Thanks so much, Swiss
Posted by TheCrimeOfLyme (Member # 4019) on :
Swiss,
Contact [email protected] ASAP! She had ALS from Lyme , ie she had Lyme not ALS and has made almost a full recovery. She does not mind that I give her email out. I dont know where you are from, but she is from New Jersey.
Good luck Jodie
Posted by swissmoeka (Member # 1577) on :
Thank you so much Jodie I will email her. I am from NH. It's always encouraging to hear good stories of people getting well. Thank you for the quick response, Swiss
Posted by eugenia (Member # 2685) on :
Swiss,
I have heard of discussions about this topic but can't give you a specific.
Do a search and see what comes up.
Please let us know how this turns out.
Good luck....
Posted by richtersl (Member # 2554) on :
About 12-13 years ago I remember my doctor telling me that he had 5 patients with ALS whom he treated with antibiotics as if they had Lyme. Three of them showed improvement and were in recovery at the time he told me the story!!
I forget what he told me about the other two.
Posted by swissmoeka (Member # 1577) on :
Richters, how wonderful! Could you tell me, was that a LLMD or a reg. dr. If you wouldn't mind could you email me where he is and his name so I could pass this on to my Aunt. Does he see new patience? Does it take long to get in to see him?
Thank you so much for the info. Swiss (much appreciated)
Posted by yahoo trish (Member # 39) on :
MANY TIMES LYME CAN MIMIC MS ALSO I HAVE BBEN TOLD. I HAVE BEEN DIAGNOSED NOW WITH MS. THE DR'S WONT EVEN CONDIDER ANBX. EVEN WITH A CLEAR CLINICAL DIAG. THEY R SO AFRAID OF MALPRACTICE I THINK. BUT IT MAKES IT SO HARD OT GET HELP. I HAVE ASKED SEVERAL OF MY DR'S FOR A TRIAL OF ANBX TO SEE IF IMMPOVE BUT ALL KEEP PASSING ME OFF LIKE A COIN, THIS NEURO WHO NOW SAID I DO HAVE MS SAID THAT I DO NOT HAVE LYME CAUSE THE TITER IS NEG. I HAD A POSS 1 BAND ON A WESTERN BLOT THOGUH BUT THAT WAS IN 2000. THAT DR WHO GAVE ME A WB SAID I NEEDED TO SEE A NEURO WHO SAID I HAD PROBABLE MS NOT LYME NO WAY NO HOW. NO MATTER HOW MANY TIMES I TOLD EACH AND EVERYONE OF THEM MAYBE 7 DR'S THEY SAID NO POSS TEST NO LYME BUT I TOLD THEM LYME IS A CLINCAL DIAG. WHICH THEY DISAGREED EXCEPT THE ID DR SAID IT WAS BUT WHEN I WENT OT SEE HIM HE PASSED ME OFF TO A NEURO. I ASKED THIS LATEST NEURO IN MARCH-APR WHENEVER WHAT A TRIAL OF ANBX COULD HURT? SHE WANTED ME TO SUPJECT MY BODY TO THE INTERFERRON TYPE MS DRUGS EVEN THOUGH THEY DO HAMPER AND DAMAGE YOUR BODY SYSTEMS BUT SAID NO ANBX. WHAT IS SO DARN BAD ABOUT ANBX????????SORRY HAD TO VENT...HOPE SOMEONE HAS AN ANSWER TO MY QUESTION ABOUT OCL. BANDING THAT I POSTED EARLIER I REALLY AM GETTING DESPERATE,,,, TY ALL. PAT
Posted by WildCondor on :
Alot of people who think they have ALS probably have Lyme Disease untreated and worsening. I met a man one time at a support group meeting who thought he had ALS for 12 years, and got a bacterial pneumonia, which got him on IV antibiotics and such a severe herxheimer on antibiotics the diagnosis came after and he has been on Lyme treatment for a year and was walking again and got his life back on track after a decade of thinking he had ALS, a story much like my own. There has got to be thousands more like it.
------------------ Lyme Disease Help & Support www.wildcondor.com
Posted by swissmoeka (Member # 1577) on :
Thank you everyone for replying.
And Richters I got your email, thank you for sending the info. She is from NH. But may be worth the trip at this point.
I haven't had any word on the tests results as of yet. I'm just hoping they will be open to listening to me if all else continues to fail. I'm not a Dr. but nothing else seems to be working at this point and she is going down hill real fast.
Any and all prayers would be greatly appreciated.
Posted by GreanPea (Member # 3411) on :
Hi, swiss!
There was an article about a patient of Dr. Bach's, named Tom Coffey, in People Magazine (June 16th issues, with Demi Moore on the cover).
Tom Coffey was diagnosed with ALS and given 6 months to live. He was ver sick and even on a feeding tube.
A relative of Tom's wife's convinced them to see Dr. Bach. He treated Tom Coffey for lyme and he's now on his way to recovery. They have since had another baby and named him Gregory, after Dr. Bach.
------------------ Lyme Disease Help & Support www.wildcondor.com
Posted by TesMes (Member # 4094) on :
Which band was it that tested positive, was it 41? Was it western blot IgM or IgG?
What are your symptoms?
Have you had an MRI? What did it show?
Do you remember a tic bite or a "flu" where all these symptoms started?
Posted by yahoo trish (Member # 39) on :
I had a western blot done says IGG and IGM ABS .41KD (igg) REACTIVE. had a EM rash june 91, behind rt knee and was unaware of lyme disease i never knew of lyme disaeae until 99 of its symptoms etc. i was very ill after the bite and had to go to dr several times severe fatigue, malaise, low fever, too tired to walk and weak, sore all over, lite-sensative, broke out in a full body rash like oval shapes. dr said i had a virus and my allergies were acting up he thought. well i bnever felt better since and kept having many inf(like sinus, broncitis, pnemonia, everything that went around) was on abx at leat 5x a yr oral kind for infections of 1 kind or the other. i went on in 95 to develop optic neuritis in rt eye. that never fully resolved but was better. was sent to opthomologist. in spring 97 developed severe motion intolerence after a bout with infections and virus like illnesses. was on strong abx prior to this severe symptom of motion intolerence, dizziness and lite-sensativity reoccured, balance was off also. my eyes were real fouled up. after a few months again of being told was alllergies or virus was snet to a neuro had 1st mri done, was told there were a few non-specific lesions,not typical looking of ms i still at this point had no idea of lyme and its symptoms. i was told very causously that is could possible be ms. i went on to see another neuro who also said it was not typical looking lesions of ms. then i went for a few yrs in limbo never feeling better alsways dizzy, fatiged i had to quit driving and lookijg out the car as a passenger even 6yrs ago. i found out a bout lyme & its symptoms & thought i finally found the answer to my unexplainable neuro symptoms. saw my local md he did a titer it was neg so he said i didnt have it. went on to a id dr who ran wb etc aNnd he said i had a clincal diag of lyme when i talked to him prior to my appt and that he was willing if my local md would over see the trial of anbx rocephin 30 days. well my local md wouldnt do it so i went to see id dr in the city then he changed his mind after i saw him and said i needed to see another neuro that my test was not poo enough. i have since see another neuro in 2001 & this past march who did a repeat mri now and a csf and said i do have ms, i asked for a trial of anbx but she wont do it. i dont know what to do i get the run around and my life is passing by. ty pat
Posted by GiGi (Member # 259) on :
You may want to do a search here and on the internet for Dr. Martin Atkinson Barr. He at one time tested approx. 100 ALS diagnosed patients, most of them tested positive for Lyme. There is a lot of info - you just need to search a bit.
Posted by woody (Member # 3824) on :
Yahoo Trish,
You need to see a Lyme specialist! You are getting nowhere with these doctors!
Please post under Seeking A Doctor for a referral in your area. Good luck!
Posted by chraxis (Member # 2251) on :
Hi Swiss! I really doubt that your family member has ALS. I'm not just being optimistic either.
First of all, ALS is an EXTREMELY rare disease. You have about the same chance as being struck by lightning (maybe not quite that rare, but you get my meaning).
Secondly, many of the symptoms of Lyme mimis symptoms of ALS, especially muscle twiching, weakness, muscle pain, etc.
Lyme DOES NOT cause ALS, contrary to what a (very) few people say.
I don't believe your family member would feel "sick" if she had ALS, but there would be quickly progressing problems with balance when walking (but not necessarily dizziness), and gripping things would be very difficult (she would be dropping things constantly.
She needs to make an appointment with a neurologist, who will perform nerve condition studies as well as a couple of other tests. If there are any irregularities indicated by these test, there are more tests to be conducted after that, if those are irregular also, then more test again, etc.
I can't stress enough the fact that almost all tests that show up as irregular do not end up being ALS. There are many other things that can cause these irregularities, including Lyme, Benign Fascillation Syndrome (BFS) - which is constant muscle twitching, and is completelty harmless, just annoying.
Also something as simple as a tiny pinched nerve can mislead the test. That was the case for me; I had a pinched nerve in my elbow (which I didn't even feel and doesn't bother me at all) that set off the machine.
It is natural to think the worst when you are stricken with a strange illness like this. ALS is everyone's nightmare. My Lyme tests kept coming up negative, and I couldn't think of anything else it was (MS was ruled out very quickly. It is fairly easy to diagnose through testing such as MRI's,lumbar punctures where Cerebral Spinal Fluid- CSF- is tested, and other nerve studies. Lupus is also diagnosed relatively easilt as well.)
I was absolutely convinced I had ALS. Ther worst part was that I had to wait 4 weeks for my appointment with the neurologist, because he is one of the best and in high demand. The the test showed an irregularity and I had to come back for another test 2 weeks later.
Needless to say, that was absolutely the scariest and most stressful 6 weeks of my life. But in the end, it turned out it wasn't ALS, and I finally found an LLMD who then gave me a clinical diagnosis of Lyme which was supported by a positive Bowen test. I began treatment with IV Rocephin and immediately began feeling better. Now don't get me wrong, Lyme is hellish enough, but relative to havong ALA its like a at at Disneyworld.
I really, really doubt she has ALS. Ther are a million other things it could be, none of them as bad. Just get her to a neuro, and you'll be able to put her mind at ease.
Let us know what happened, and good luck!
------------------ D.C. Chris
[This message has been edited by chraxis (edited 02 July 2003).]
Posted by swissmoeka (Member # 1577) on :
Thanks so much for the encourgement Chris. She went to Boston today to an ALS specialist. I've been tring to get through to find out how they made out. Hope to hear something soon.
Posted by MarkNH (Member # 6340) on :
Hi Swiss and everyone! I am also from NH and have neg. lyme tests and have been diagnosed with " unusual ALS" that's been around at least 3 years (supposed to be dead by now). I have the fasciculations all over including the tongue, and foot drop in both feet. I could sure use a good LLMD in the NH area and an update on your friend's condition. Thanks, Mark
Posted by Sue vG (Member # 3143) on :
Hi Mark,
Unfortunately, I recall reading on another forum that swissmoeka's aunt passed away.
The post is toward the bottom of page 3 in the above thread.
[This message has been edited by Sue vG (edited 08 October 2004).]
Posted by lou (Member # 81) on :
So, Mark, does that tell you anything about the need to hop on this now? Doubt if there are any lyme docs in NH. Look at the support groups listing on this website, and contact the nearest one (may be out of state) or post in the looking for a doctor forum. You will probably have to travel and deal with out of network doctors.
Some people with late stage Lyme, told they have ALS, can be pulled back. It is too late for others, even though they get the best treatment now available. Lyme kills people too.
I am worried about you. Please get going on this soon. Also, do a search on this website for ALS. It has been discussed a lot. But then, maybe you already have, since you found this post from last year.
Posted by kam (Member # 3410) on :
I haven't read the other posts to your question this morning, but the biggest obstacle may be getting the person to go to pay out of pocket and got to a LLMD.
It is the best way to rule out or confirm whether or not it is lyme disease.
Lyme is a clinical dx by a lyme specialist.
It was thought that I might have ALS, or MS and other conditions.
I saw over 35 doctors in my search for answers. Only two of the doctor's I saw were lyme literate.
This included one teaching medical center in San Franscisco and a world reknowned medical clinic in Santa Barbara.
There was a doc in Santa Barbara that as he said "believed in lyme disease even though many docs do not." I had all ready been dx by a lyme specialist when I saw him and been tested with Igenex lab.
The neuro and ID in SAnta Barbara didn't beleive my symtpoms were lyme related and did more testing.
They were not lyme literate which is the case most of the time sadly.
It seems that the patients are learning about it and then if the doctor's are open to learning getting the information to them.
A little bit backwards but it is refreshing when I find a doc who is open to learning more and will admit that all they know about lyme is the standard abx treatment of a few days or week.
Posted by Mathias (Member # 5298) on :
You also should get tested for mycoplasma. When mycoplasma invades the CNS it can also cause symptoms that mimic ALS. I have a mycoplasma fermentans infection in my CNS and have a lot of ALS type symptoms (twitching, cramping, etc.).
I also had lyme (clinical diagnosis) and was treated aggressively with many antibiotics including IV but I did not start to see improvement until the mycoplasma infection was diagnosed (by PCR on spinal fluid) 11 months later and I was treated with the right antibiotics.
Posted by MarkNH (Member # 6340) on :
Thanks for the replies. Treepatrol sent me some docs in Maine and one in NH. I tried the NH one last year and actually talked with him on the phone. He said that he wasn't an LLMD and recommended some other old gent that gave me a big dose of Penicillin and called it good. Neither was any help. I'll check the Maine and Mass. support groups next. Am looking up myco... Thanks! Mark
Posted by lou (Member # 81) on :
A truly lyme literate doc will know to test for other tick borne diseases too. Many of us are co-infected.
Mathias, I am interested in knowing what the correct antibiotics for m. fermentans are. Apparently nothing I have taken so far, a whole raft of stuff, is correct because I still have the mycoplasma in my blood.
Posted by Mathias (Member # 5298) on :
M. fermentans is very suseptible to Cipro and Levaquin. Have you been on either of those?
I'm also having some sucess on Ketek.
My LLMD has told me that it may take 6 months to clear the mycoplasma from my system.
How long have you been on abx and for how long?
Posted by lou (Member # 81) on :
Have been on meds a LOOOOOONG time. But I can't do any fluoroquinolones again. Three weeks of avelox stomped my achilles tendons, apparently permanently. So, not going to be trying levaquin or cipro!
Maybe ketek will work at some point. Current doc only using this on "carefully selected" patients. Not sure what that means. But I was not selected. Have been on nearly every other commonly prescribed antibiotic and babesia-killer.
Posted by Mathias (Member # 5298) on :
Have you been on Clindamycin? It is susceptible to that. It is also susceptible to Josamycin.
The fluoroquinolones seem to be the best though.
The cyclines also have some activity but it not as good as the other choices.
Posted by lou (Member # 81) on :
Yes, on the clindamycin. Maybe I should be re-tested, since my last test for mycoplasma was before I took clindamycin. It would be nice to get rid of something! Not sure the babesia is gone either. Got my fingers crossed and will be re-tested for that in Dec. I think.
Thanks for the info.
Editing this becaue I found in my piles of papers the info that a lyme doc whose name I will not post is apparently using the combo of doxy and zith with a proton pump inhibitor as a treatment for mycoplasma. Don't know the dosage.
[This message has been edited by lou (edited 13 October 2004).]
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http://www.geocities.com/lymeart3/als-index.html