I'm wondering if there's anyone else on here who was originally diagnosed with ALS but is now being treated for lyme? This was the case for me and I've been lurking on here hoping to find others. I see we are few.
I'm being treated by Dr.B with mild success, but the improvements i've noticed haven't impacted my everyday activities.
Diagnosed with ALS Nov. 04, diagnosed with lyme Jan, 06 even though Igenex test was IND.
Started on three months of tetra and noticed improvements in joint pain, headaches, fatigue, and strength. Switched to Amoxy and didn't notice anything else for four months. I am now on Mepron / Azythro for the past three weeks and have noticed improvements in twitching and sweaty palms.
I haven't noticed any improvements in motor function and I'm wondering if there's anyone out there that can offer me a little encouragement with your experiences.
I'm hoping to be able to rebuild some muscle and I'm wondering what has helped others in my situation. Thanks in advance.
Mike
Posts: 6 | From ontario | Registered: Nov 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Mike, I can't comment directly but noticed yesterday tht there is a section in the newbie links on Lyme and als.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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bettyg
Unregistered
posted
welcome Mike to the board!
There are many others on here who were dx ALS TOO.
Here's how to find their posts; do a SEARCH found at top under NEW POST.
type in ALS MEDICAL TOPIC ONLY ANY DATE ... make sure you EDIT MY PROFILE TO ANY DATE vs. default ok!
leave membership blank, and hit search enter button
You should get quite a few posts!
Also, TREEPATROL'S NEWBIE LINKS found at top of MEDICAL has valuable info; he's our ARCHIVE of wonderful links of wealth/HOPE!
I'm sending you by PM, private message, my 21 pages of newbie links/advise. I have Treepatrol's link to click on there.
My best wishes to you that you are MISDIAGNOSED, and can get help with the wealth of info here!
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Mike,
While I was never officially diagnosed with als my first appointment with an ID duck came back with a letter to my PCP at the time that I "might have ALS" among other things.
This idiot duck also said...he did'nt trust Igenex lab results. He told me "I don't think you have lyme disease, but I'll treat you for lyme arthritis". Now how stupid is that!?
I suggest that if you can get into a hot tub or sauna while you're on abx. This external cellular hyperthermia may help the abx get to critical areas imbedded in your cns and muscles etc.
I was IGG positive with five bands. Which was good enough for the CDC who I had to report to but not good enough for this Idiot duck!
I also suggest getting your hands on a tens unit...it's an electric muscular stimulator.
I believe mine helped to re-awaken muscles and more imortantly nerves in areas that were affected by the lyme dissemination....who knows maybe it even fried a few of the little buggers.
If you dumn duck won't give you one...you can go to one of those television channels that sells stuff and get DR. HO's machine....IT's not as good but will suffice.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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The way my LLMD explained the recovery of motor functions in lyme cases was that the neurotoxin had interupted the information flow. It only takes a small amount and can stay in place for an unknown time frame. But, as those people that take botox for various problems know, the body will seek out and remove toxins. Botox is usually gone within a year and a new shot is required.
The trick is to kill the lyme to stop the production of neruotoxins so whatever time frame your body uses to rid itself of toxins, it will eventual do so.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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Welcome to Lymenet. I'm sorry you're not doing well.
I don't have any experience directly with Lyme and ALS other than I recommended a co-worker's friend with ALS see an LLMD.
This co-worker's friend was being treated for ALS and doing very poorly. According to his friend the guy could barely move and had given up.
The co-worker had told me about him a year ago and I gave him the number of an LLMD, told him that Lyme is often misdiagnosed as ALS, and that his friend should seek a second opinion from this LLMD. Well, the ducks this guy was seeing convinced him that there's NO WAY he had Lyme so he never called.
Come this past August the fellow is now dying and the ducks had given him two months to live. The co-worker had told him about the CD-57 test and said that he could request that test from the hospital where he was at. The ducks first refused, then took a blood sample for the test. They never told him the results, even after repeated requests.
Out of desperation the co-worker asks me again from the LLMD's number. I gave it to him and told him to stress to the guy's wife to call that number ASAP.
To make a long story short, the wife followed up on this and he saw the LLMD. A Lyme test was given and he was put on antibiotics. Within two weeks he had energy to walk around again and was starting to put weight back on. From what I understand, folks with ALS do not gain weight.
This fellow tested positive for Lyme on the CD-57 test.
Though he still has a ways to go, he is now getting his life back and is at least moving in the right direction.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
There was a doctor that presented at the ILADS conference in October that had ALS himself and was later diagnosed with Lyme. Started on Rocpehin and had a remarkable recovery including of some motor function, etc. Was so pleased with his results that he started a clinic aimed at people that have ALS and overall, the results have been promising. If you want more specifics, I can probably find them. PM me or email me through my site. Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks for the correction, Cave. I've seen your posts on that test and I appreciate you jumping in.
Now I'm not sure which test he was positive on. But I guess it really doesn't matter right now, because he's shown dramatic (according to his friend) improvement upon getting treated for LD.
If I find out anything else on him, I'll post an update in this thread.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The doctor who spoke at ILADS who had been diagnosed with ALS noted that, although he had ALS symptoms, he also has symptoms inconsistent with ALS. That was why he kept searching for another answer.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Mike- It took a good 18months before I started feeling better and I'd say I'm at 50% of my old self after 3 1/2 years of treatment. I had trouble walking, I forgot how to swallow (that lasted a few weeks). I also had trouble lifting my arms.
One doc diagnosed me with ALS about 8 years ago but now has reversed himself s as I have gained weight and muscle matter. My strength is much better.
I was also diagnosed MS and 'some yet undetermined degenerative neurological disease'.
I feel fine walking now, I still get tired and still have major relapses (probably herxes) but I have not trouble swallowing, I can breathe better now. I have even been able to work consistently over the last 6 months (part-time but up to 30 hours a week).
Keep working at it. I did a lot of hot baths and a friend took me to a sauna regularly. You want someone around after that - as it makes you really week. I also went to physical therapy at the 2 year mark regularly and did limited physical therapy at the 18 month mark.
Also, have twitches here and there but I used to have them all over my body. My palms are still sweaty.
Posts: 298 | From Maine | Registered: Jan 2004
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posted
I don't think cold hands and feet are part of ALS...at least it is not a main symptom.
True, not perceived, muscle weakness followed by cramping and twitching are the main symptoms. In the case of Bulbar onset ALS, it can present as slurred speech and difficulty swallowing, mainly liquids.
Posts: 331 | From virginia | Registered: Nov 2005
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quote:Originally posted by Aniek: The doctor who spoke at ILADS who had been diagnosed with ALS noted that, although he had ALS symptoms, he also has symptoms inconsistent with ALS. That was why he kept searching for another answer.
What symptoms of lyme are not consistent with ALS? I've heard people talk of this before, but never specify the symptoms.
I have tingling in the hands and feet, sweaty palms, oily skin on my forehead, hands will be cold even in a warm room, hot flashes, muscle attrophy, twitching and cramping that is on and off, balance issues, night sweats that cleared up with tetra, dark urine cleared up, slurred speech, sensitivity to light and sound, joint pain, ice pick headaches, ETC.
Posts: 6 | From ontario | Registered: Nov 2006
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posted
Dr Lida Mattman believes that ALS, MS and Lyme are three diseases caused by different Borrelia species . For example ALS Bb spirochete is growing very fast, MS Bb has diffent cysts etc.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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Diagnosed with AlS by national level neuromuscular doc. Went on IV Rocephin and in 2 1/2 months regianed 15 pounds of muscle(just with activities of daily living,no exercising)with some strength gains also.
Even with an indeterminate western blot (did you have genus specific bands +)and an ALS diagnosis I would get the central line of choice and start Rocephin(as long as your not allergic) asap and closely watch your response.
There was a small study done by a university on the east coast where 9 seropositve(for lyme)ALS patients were given fairly short (I think 1-2 months course of Rocephin) 3 improved dramatically 3 stayed the same,and 3 became worse.Now this is a very small study group, but even 30% improving is huge with a disease that is usually a terminal illness.
I definitely benefited from Rocephin(after failing on oral abx) and although I don't considered myself cured I am stronger and hold more muscle mass now(1 year later)than my lowest point.I am not a MD so this is just my personal opinion based upon my experience. If your not already with an LLMD get with one and go for Vitamin R!(healthcare workers term for rocephin)
Take care,
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I will quote a short paragraph of a 3-day seminar in 2004 on chronic diseases spoken by Dr. K. as he was leading into the subject of detoxification and ALS(symptoms?):
"A couple of case studies on ALS. ALS is a whole other topic to talk about. We have a wonderful treatment for ALS now that has worked on a number of people. Especially if you detox them, and take out all of their teeth that are in some way suspicious and clean up the jawbone as much as you can; then put them on the AIDS regime of anti-retroviral drugs, and we have seen for the first time, case after case after case, remissions in ALS that are very dramatic."
The "wonderful treatment" he is talking about is repeated treatments with the Phospholipid Exchange protocol. It supports the liver mainly to clear out the toxins. But with ALS symptomatics, it has to be done for about a year, 1x per week. I have the protocol if you are interested.
The same protocol is used for MS and Parkinsons; all based on microbial infections and major toxicity problems. The heavy metals are the major ones besides the mercaptans.
Mercury damages the dental area. First comes the crown; then Root canals are often the consequence. The root canals produce the mercaptans and thioethers, a horrible brain toxin, that eventually destroys not only the jawbone, but moves into the rest of the body, mainly the brain. Many clinical studies. Do some research if any of this affects you.
So it takes more than years of antibiotics, I am afraid. Viruses, parasites, all have to be addressed. I have posted a lot here over the last few years and you might find some of it helpful. It is not only Lyme that makes us so ill. I have been through all of what I mentioned here and it worked for me, as it has for many others.
Best wishes and take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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3 stayed the same,and 3 became worse.Now this is a very small study group, but even 30% improving is huge with a disease that is usually a terminal illness.
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