I was first diagnosed with ALS in 04....I was only 32 yrs old and he said I was going to die in 3-5 years.
Then Found a LLMD and found out I had Lyme in 05..I have been getting treatment for almosst 2 yrs...some parts of me are better while others are worse.
My main symtoms are Twiching, weakness and atrophy. It all started in my left hand...but now is slowly getting better.
I was wondering how many of you had similar expieriences.
Thanks Derek
-------------------- 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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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Derek, so glad you are seeing improvement! That is wonderful!
I have been diagnosed with Lyme and MS. Am currently in the middle of more MRIs and trying to figure out a way to get me out of this wheelchair!
I just posted my long-winded story in a post here about MS.
Thanks for sharing your good news.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Derek,
I used to co-moderate the ALS/Lyme group when it was big- if you are responsive you should NOT stop abx NO MATTER WHAT- be aware some orals make people progress- I believe this is TBE crossover/activation- be careful of that- IM Bicllin and IV Rocephin have both worked well for ALS Lymies- and I know one guy who did great on orals- almost every single surviving ALS/Lymie I know was also treated for Babesiosis!!! and one was treated with JUST zithromax and Mepron actually-
I am a death watch Lymie like you, I was a very sick one, NOT ALS but a real neuro mutt, some ALS symptoms, some Parkie symptoms, basically very bad bad bad bad bad Lyme symptoms- and am almost completely well- I am well and have been for 6 years excepting I can't go off abx w/o declining-
This is not unusual for us tertiary types-
Nice to meet you!!!*)!)!
We had 4 local ALS Lymies- 3 are alive- 1 died but he was late late ALS and in his second week of Lyme treatment- he died of c difficile, was too weak to fight it off- 3 others did as well as me two of them the third doing ok last I heard- but still a struggle-
Nice to meet you*!! Call if you want ever- I'm under support groups for Santa Cruz CA-
-------------------- 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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ALS was eliminated on me, but i have all of hte symptoms, including major tongue symptoms.
I started lyme treatement, but it made me really sick. I go back to my LLMD the 29th.
I was on malarone, difulcan and zithro. I stopped the zithro, i finished the difulcan and i stopped the malarone. it made my wasting get really bad really quickly.
I think, i am going to ask my LLMD for IV Ceftriaxone, as it's approved for neuromuscular treatemetns.
Anybody hav this experience, i hear iv ceft. (rocephin) fights lyme?
rgds
Posts: 44 | From Lafayette, LA | Registered: Apr 2007
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posted
Anybody have anything further to add to my post, has anyone switched to Ceftx. Also, i see babesosis is in most ALS presentations of lyme. My LLMD told me i had this, due to chills, sweats, ringing ears, etc. I talked to him, he told me there was no option to the malarone?
The malarone messed me up.
I'm lost
thx
Posts: 44 | From Lafayette, LA | Registered: Apr 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jamiet, Get the babs book by Dr. S. There is one for physicians and one for patients. It lists various treatments used by LLMD's. Mepron is a common treatment but there are others.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I was one limb away from getting an ALS diagnosis. I also had tongue involvement (twitching and speech problems).
It took me 3 years straight of various orals in conjunction with over 1 years of intense PT to regain my health.
I'm 95% better now but am still working at regaining that last 5%. Don't know if it is possible to get it all back but I think the sooner you start treatment the better off you are.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hi Derek, You sound identical to me. I have atrophy in my hands arms and shoulders. I have regained some muscle, mostly in my triceps, since starting rocephin in May. I have made some improvements with physio but they are small. I don't really have a lot of advice for you as i am in treatment myself right now and waiting to see how it goes. Seems to be helping, but I don't know for sure. Maybe Sarah can shed some light on this for us.
Posts: 6 | From ontario | Registered: Nov 2006
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posted
Hi Derek, You sound identical to me as well. I also have atrophy in my hands, arms and shoulders, fascic's come & go.
JAN 05 - symptom onset (hand) AUG 05 - dx possible ALS (local Neuro) DEC 05 - surgery C5-6 ACDF AUG 06 - dx definite ALS (local Neuro) OCT 06 - dx definite ALS (Mayo Clinic) FEB 07 - IgeneX Bb IgM WB POS, LLMD
Meds: Ceftriaxone/Rocephin IV Azithromycin/Zithromax IV Metronidazole/Flagyl - (dropped recently) Isonicotinyl/Isoniazid Mefloquine/Larium
Don
Posts: 5 | From CO | Registered: Apr 2007
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Don and Canadian Mike, how long have you been in treatment?
Its been almos 2 years for me and I am waiting for that break in symptoms. Like every 2 months I have a great couple of weeks, then slide back down hill for a while. Does this happen to anyone else? How long does this take? Dont get me wrong, I am gonna fight like hell for as long as it takes, but I was wondering how long is the average.
I also dont want to get much worse....still walking and want to stay that way but is getting a little difficult at times
Thanks again for all the posts from everyone....it really helps to hear everyones story
Derek
-------------------- 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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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Okay, you guys, the quickest people I have seen get back to normal are one guy locally (my ex husbands ex business partner Mike) and this guy online named Dave who was definite ALS.
Here are a couple of the success stories from the old group- my advice- and I am not a doctor- STAY ON IV Rocephin or IM Bicllin and treat for BABS! And take the TBE herbal anti-virals- LEDUM for example-
I only know 1 ALS Lymie who lived who just did orals- orals often would make people die FASTER which is what the Russians found with TBE coinfections with Lyme.
ASTOUNDINGLY, the second story I am copying here is of Kari Mayne whose response was even more astonishing because she was not just diagnosed ALS, she was diagnosed FAMILIAL ALS-
ALSO, IF YOU ARE LUCKY ENOUGH TO BE RESPONSIVE_ DON"T STOP ABX EVEN FOR A WEEK- there was one poor guy in the old group who was responsive and got complacant and went off and when he went back on he was no longer responsive- if you are even near an ALS diagnosis you HAVE NO TIME TO WASTE!!! but there is hope- and some people DO live-
NOTE: Dave is one of the two quickest responses to ALS tx I have ever seen, the other guy was local here and just did orals- Zithromax and Mepron actually- he was not even treated for Lyme- his doctor treated him only for BABS- !!! But then he went off and declined and had to go back on- but he has returned to normal twice- But for most ALS who do well it is a long struggle. Best wishes, Sarah
Here is Dave-
Lyme treatment for ALS Options
Newsgroups: sci.med.diseases.lyme From: [email protected] (halgaard) Date: 2 Jul 2001 02:24:28 -0700 Local: Mon, Jul 2 2001 2:24 am Subject: Lyme treatment for ALS
I was dx'd definite ALS 3/00 and tested positive for Lyme on ELISA and Western Blot 2/01. On 4/18/01 I began an aggressive therapy for Lyme. I started a six week course of IV Rocephin followed with oral Flagyl 500 mg tid and oral doxycycline 100 mg bid.
My ALS symptoms started to deminish at day four of IV Rocephin with spasticity, cramping and virtigo disappearing. Within another three days clonus in ankles and jaw became almost non-existant as well as speech problems and swallowing difficulties. Prior to IV Rocephin the spasticity and cramping kept me on my butt. My diaphragm would cramp violently if I sneezed. I also fell a lot prior to IV and managed face plants most of the time. I have not fallen once since abx. I alos changed the oil and filter in my two cars and hand washed them.
During the six weeks of IV Rocephin my ALS symptoms were mostly gone. I was left with the muscle wasting that had occurred since onset. There has been no new wasting as far as I can tell. Being a smart-*** , I felt there was no need to combine oral flagyl and doxycycline, so I laid off the doxy and started with only the flagyl. Within four days of just oral flagyl my symptoms all returned, spasticity, cramping and clonus. I started doxy and within 24 hours those symptoms started to disappear.
It is now three months since the start of abx. I have no spasticity, cramping or clonus. My reflexes fall within normal range, they had become quite hyper. My FVC went from 68% prior to abx to 88% now. I have minor foot-drop in the left ankle and the right has none. Prior to abx I had AFO's for both feet as dorsaflexion was gone. My leg strength is increasing as I am now able to walk two miles/day and continue to shave time from the miles. I could not walk one mile prior to abx.
Basically, what I am left with is a pure lower motoneuron syndrome that has left me with atrophy. My left hand, arm, both shoulders, my neck and left leg have significant loss of muscle. My right leg has rebounded the best as it was not too affected. My right hand and arm are affected but they are also rebounding nicely.
I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed with lyme until August 1999, after being sick for 11 years (and having a stillborn child - lyme of course.) Before I was finally diagnosed with lyme I exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus - the doctors thought they had an ALS diagnosis nailed down tight. Only through my stubborness and refusal to accept the ALS dx did I research the internet and find an llmd. My first visit, even without labs, the doc - God bless him - said I had the worst case of lyme he had ever seen at that time. Subsequent lab tests ELISA and Western Blot both positive.
The symptoms which are now COMPLETELY GONE are:
no more severe muscle cramps no more fasciculations no more numbness in face/tongue/forehead I can swallow without difficulty now no more slurring of speech no more limping and severe weakness in legs no more ringing of ears no more confusion/memory loss/lyme fog/depression no more debilitating fatigue I can now pick up pennies off the floor - fine motor skills are back in hands I can lift my eyebrows now I don't choke on liquids Bright light doesn't hurt my eyes anymore Reynaud's syndrome is better No more intense heel/bottom of foot pain No more TMJ or tooth pain No more running into walls, doors because of poor balance or legs "giving out from under me" I can drive without getting lost No more hallucinations I can count to 10 I can raise my arms to shampoo my hair No more pain in joints or numbness in limbs
Of course, there's more symptoms...but you all know what they are. These were just the ones that plagued me most. Everyone, of course, responds differently to medication and recovers at different rates. But, I have no doubt that all of you will get better over time. Probably the thing that helped me most is the Bicillin shots. Behaviorally, plenty of REST and the determination that I would not identify myself as a "sick" person kept my attitude positive and my spirits up even when my body argued the opposite. I have lyme, lyme doesn't have me kind of thinking.
I see a great spirit of helpfullness and positive thinking in these emails which makes me want to respond. In various lyme chats and online discussion I have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER - Renee and Sean you're awesome! I haven't really participated in any support groups or discussions such as this in a while. Since I've gotten better, I don't like to be reminded of my lyme nightmare (even though I am still taking Bicillin shots twice weekly.) But you people are so sharp and caring I felt I needed to tell you a good news story.
Bicillin shots have almost cured me. Been taking them a year now...99% of my symptoms are gone. Lyme can be defeated! I started seeing improvement (dramatic) in a couple of months after I started with the Bicillin shots. My doctor was amazed. It's wierd, you sometimes don't notice that you're getting better because THERE ARE SO MANY, MANY THINGS that are hurting or not working right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my eyes today." Sometimes it takes awhile to notice because to you the changes seem small, but they all add up. The biggies for Mike - like getting out of bed unassisted - take longer because there are more muscles/nerves/joints/etc. involved in doing them. Each muscle/nerve/joint has to heal (and there are many, many of them) before the motion gets easier. That's a lot of healing. That's why you'll see the small changes first - such as ears stop ringing. Not as much is involved. My response is that Mike is probably improving dramatically, but it may not be in the areas that worry him most.
Regarding the Bicillin shots. Yes, you will find hard lumps at the injection site. There's no way to avoid it. They will eventually get smaller - but not go away. You see, it's scar tissue under there. Every time you get a shot, it damages the tissue. These shots are powerful. You will experience times where it's very difficult to insert the needle because you'll run into a lump of scar tissue built up from continuous injections. It really hurts when this happens. Yes, sometimes I have bicillin leaking back out of the injection site. It doesn't worry me. It's usually because I got active too fast before my body absorbed the Bicillin. Just slap a bandaid on their and wait a couple of minutes before attempting to move.
I sympathize with dilemma re: childcare when you can't get out of bed. My doc told me to put my 2 1/2 year old into daycare last May. This month - we took him out because I am well!
-------------------- 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
dbl & canadian mike, are you getting better.
I spoke to my LLMD about Rocephin IV treatement, as the zithro & malarone did exaclty what they stated here....moved things very quickly.
Did any of you guys have the hoffmans or babinski?
Thx,
Jamie
Posts: 44 | From Lafayette, LA | Registered: Apr 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
This was presented by Dr. H during a conference.
Dr H closed his talk on a hopeful note, mentioning that for the first time in 20 years, he has seen evidence of a possible treatment solution occurring right before his eyes, "in my office during the last 30 days."
A patient had come in who suffered from Lou Gehrig's disease, and was given glutathione by intravenous injection to remove heavy metals stored in his brain cells.
"Neurotoxins produced by the Borrelia spirochete, or Lyme disease bacterium, also interact with heavy metals in our cells," Dr H pointed out.
After being given the IV dose, the patient showed 90 percent improvement within ten minutes. His joint pain was gone and his cognitive symptoms improved markedly.
"We repeated the experiment doing a double blind test with saline instead of the glutathione," Dr H said, adding that the results were encouraging and consistent.
"All these chemicals in our bodies cause inflammation, and glutathione seems to act like a sponge that pulls them out. I'm very excited about this."
Posts: 1603 | From ny | Registered: Aug 2006
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