posted
Not sure if anyone knows what works best, that is why the research is needed. I am sure that all the lyme docs have had cases that present with "ALS" symptoms but also have other symptoms and a positive test for lyme and sometimes even multiple tickborne diseases.
The problem is that there is a lot of variability in reponse to treatments, and putting together the pattern on which treatments work for which symptoms is still very much in a beginning stage. It is being attempted by docs who are swamped with patients, and are trying to buck the medical establishment, which is hopeless with tickborne diseases and closed minded on causes of diseases like ALS. For that reason, the money and encouragement that should be given by federal health agencies to research like this are NOT being given.
I don't think that the people at Johns Hopkins believe their rocephin study on ALS suggests an infectious cause. There are other diseases that are also having clinical trials of antibiotics, but this is because the researchers believe abx have anti-inflammatory properties. In fact, frequently they say specifically that it is NOT an infectious disease. I think this is certainly dogmatic and unseemly in people who don't even know the cause of whatever that disease is. If they don't know, how can they make these statements?
Do you care to be specific about your situation? Or have you already posted it earlier?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou, thank you for your input. This is the second time that you have made me feel better. In Feb 2003 my fine motor coordination skills in my left hand were slow. June 2003 went to neuro in NJ. Had EMG and MRI -- both fine. He sent me to Columbia neuro. Tests repeated; still neg. He said I had motor neuron disease; very lowkey. Nov 2003 went to another neuro; symptom still minimal. Walking a little slower; some words slurred. Tested for stroke; negative. Jan 2004 when cold or nervous muscle in left leg twitched. June 2004 MRI showed white spots on LEFT side of brain. However, only my left side was affected so that didn't make any sense. My neighbor thought I had Bell's Palsy and my gait was slower. She works at Columbia and arranged for me to see an ALS neuro in July 2004. He said I had PLS a non-fatal form of ALS. In Sept 04 MRI and SPECT showed same white spots as before; EMG SSEP and TMI normal. Tested for Lyme Jan 05 by LLMD. Positive. Began IV Rocephin and Ketek Mar 05. All symptoms fluctuated then declined. Speech: tongue slow and resonance poor. Balance has declined. I go to speech therapy and PT; both help maintain strength. Sept 05 switched to IV Zinacef. Stopped all abx in Nov per LLMD. Am now walking with a quad cane and have a transport chair for shopping. In Nov tested + for babesia. Was on Mepron and Diflucan and Zithro. As of 2 wks ago I am back on Zinacef along with Malarone, diflucan, Zithro and tindamax. Too soon to tell. Yesterday I saw a neuro at Mt Sinai who said it was ALS not PLS; PLS doesn't affect speech so he says. Said he doubted it was Lyme. Columbia neuro adamant not Lyme. I have seen 3 very distinguished LLMDs who have all recommended treatment and I am following their recommendations. Thanks, Lou.
Posts: 39 | From NJ | Registered: Nov 2005
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posted
Lou, thank you for your input. This is the second time that you have made me feel better. In Feb 2003 my fine motor coordination skills in my left hand were slow. June 2003 went to neuro in NJ. Had EMG and MRI -- both fine. He sent me to Columbia neuro. Tests repeated; still neg. He said I had motor neuron disease; very lowkey. Nov 2003 went to another neuro; symptom still minimal. Walking a little slower; some words slurred. Tested for stroke; negative. Jan 2004 when cold or nervous muscle in left leg twitched. June 2004 MRI showed white spots on LEFT side of brain. However, only my left side was affected so that didn't make any sense. My neighbor thought I had Bell's Palsy and my gait was slower. She works at Columbia and arranged for me to see an ALS neuro in July 2004. He said I had PLS a non-fatal form of ALS. In Sept 04 MRI and SPECT showed same white spots as before; EMG SSEP and TMI normal. Tested for Lyme Jan 05 by LLMD. Positive. Began IV Rocephin and Ketek Mar 05. All symptoms fluctuated then declined. Speech: tongue slow and resonance poor. Balance has declined. I go to speech therapy and PT; both help maintain strength. Sept 05 switched to IV Zinacef. Stopped all abx in Nov per LLMD. Am now walking with a quad cane and have a transport chair for shopping. In Nov tested + for babesia. Was on Mepron and Diflucan and Zithro. As of 2 wks ago I am back on Zinacef along with Malarone, diflucan, Zithro and tindamax. Too soon to tell. Yesterday I saw a neuro at Mt Sinai who said it was ALS not PLS; PLS doesn't affect speech so he says. Said he doubted it was Lyme. Columbia neuro adamant not Lyme. I have seen 3 very distinguished LLMDs who have all recommended treatment and I am following their recommendations. Thanks, Lou.
Posts: 39 | From NJ | Registered: Nov 2005
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quote:Originally posted by Disheartened: Tested for Lyme Jan 05 by LLMD. Positive. Began IV Rocephin and Ketek Mar 05. All symptoms fluctuated then declined. [/QB]
Most ALL neuros dismiss lyme as a possible cause for neurological symptoms. Please find a dr well-versed in Lyme treatment and stick with it. I think you stand a VERY good chance of improving!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I was subjected to Nuerobias myself last July when I flunked a Nuero exam and Dx'd ALS. The goofball was concerned with my algebra grades 30 yrs ago, and a birthmark on my arm. Never asked about rashes or insect bites.
I presented typical ALS sypmtoms, and them being worsening symptoms. I tested pos for Lyme in Nov and began treatment. My goal is to be nothing less than a poster boy of what good treatment can bring. It is a very scary ride but one that I refuse to not bring full benefit and remission, whatever it takes.
I continued to have dificulty and still do in many ways, but the tide is turning. I am improving slowly but surely.
The ABX alone will not do it. Study detox and make it your daily -job-.
Quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
In 2004, I attended a Dr. K. seminar where a number of physicians, scientists and researchers spoke on the subject of "Latest findings and research in the field of chemical and heavy metal detoxification", which almost immediately during the first hour included the subject of microbial infections and Lyme Disease.
I have gone through all the information I gathered there and have picked up all the remarks that where made during the 3 day seminar by various speakers involving ALS, MS, Parkinsons, etc.
I will post these "remarks" below as I recorded them and you will have to do your own "interpretation". I am just giving you the words as they were presented by people that are confronted with neuro problems daily. All info of course was accompanied by exhibits of abstracts, research data, etc. that I cannot give you here. You will also find the comments made by a former ALS suspect/totally devoted to research now, who is now well - reality at its best:
REMARKS INVOLVING ALS, MS, PARKINSONS
"We know there is a link with MS, ALS, with all the neuron-degenerative diseases once mercury enters the cells.
ALS, an autoimmune disorder, a symptom of Chronic Mercury Toxicity
Switzerland found that downwind, certain valleys, from an incineration plant - MS and ALS and neuron diseases most dominant. Plant closed.
Handout to attendees: 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 teeth that are in some way suspicious and clean up the jawbone as much as you can, and then put them on the AIDS regime of anti-retroviral drugs; we see for the first time case after case, remissions in ALS that are very dramatic. (Recovery from ALS and from Allergy after Removal of Dental Amalgam Fillings. Olle Redhe and Jaro Pleva. International Journal of Risk and Safety in Medicine, 4 (1994) 229-238.
Metal Allergy has clinical relevance in ALS (many others listed also). www.MELISA.org
ALS - baseline of amino acids - nothing driving the citric acid cycle
ALS - patient lost - on abx - patient felt that himself
ALS - with severe heavy metal toxicity and psychological trauma that had to be resolved Before healing could start. Trauma -- could not release mercury from body. Patient fine today.
Diagnosed with probable ALS in wheelchair. Now research/scientist www.altcorp.com. Healthy after removal of all toxic infections. Dental toxicity, neurotoxic effect.
Inhibited forms of P21, P53, P27, and CDK2 cannot function in the glycolyzation, hydrolyzation and methylyzation pathways and exhibit other ``downstream'' effects such as production of free radicals that are introduced into the bloodstream, which can lead to the production of antibodies exhibited in other auto-immune diseases, such as Lupus, Parkinson's, ALS and MS. (altcorp./)
SOD=1 superoxide dismutase. SOD's have a function in the human body. Every mineral, every supplement that you take whether it is from food or from an outside source has to be accompanied by one of these SOD proteins into the cellular structure, or the cell rejects it as a heavy metal toxin.
SOD-1 at 5uM is wiped out by these dental toxins (root canals, cavitations) SOD1 is primarily zinc and copper transport, and also calcium; has to be used for muscular cellular regeneration, and without the ability to regenerate itself, you get muscle atrophy that you see in MS and ALS patients, and the reticulations that you see in ALS. This is where it is coming from. All the SOD proteins are knocked out by these dental toxins. There is another toxin that also inhibits this protein and that is CWD-Bb. The connection to Lyme is being firmly established at this time.
Took 36 root canal teeth from ALS patients. patients had numerous root canal teeth. 9 ALS patients in total, ran and extracted from those teeth taking the toxins out. Separated out CWD borellia. Transmittable by saliva, kissing, sexual intercourse..........f Found that that form of Lyme stays very prolific and alive for as long as 72 hours, in the sunlight, even. In the sclerosing type of patient, this toxin itself that is produced by this cell wall deficient Lyme is just like a blob. It has lost its spirochete from that looks like a syphilis spirochete. It's just a blob and it goes everywhere. It is highly contagious. Can't ship material from one lab to the other!
DMPS with advanced neurologically impaired patients - do not use. Often they come too late. It is used selectively.
Hope that tells somebody something.
Posts: 9834 | From Washington State | Registered: Oct 2000
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bettyg
Unregistered
posted
breaking this up for readability; please hit the enter button often after 6-8 lines and double space please. Thanks so much!
quote:Originally posted by Disheartened:
Lou, thank you for your input. This is the second time that you have made me feel better.
In Feb 2003 my fine motor coordination skills in my left hand were slow.
June 2003 went to neuro in NJ. Had EMG and MRI -- both fine. He sent me to Columbia neuro. Tests repeated; still neg. He said I had motor neuron disease; very low key.
Nov 2003 went to another neuro; symptom still minimal. Walking a little slower; some words slurred. Tested for stroke; negative.
Jan 2004 when cold or nervous muscle in left leg twitched.
June 2004 MRI showed white spots on LEFT side of brain. However, only my left side was affected so that didn't make any sense.
My neighbor thought I had Bell's Palsy and my gait was slower. She works at Columbia and arranged for me to see an ALS neuro in July 2004. He said I had PLS a non-fatal form of ALS.
In Sept 04 MRI and SPECT showed same white spots as before; EMG SSEP and TMI normal.
Tested for Lyme Jan 05 by LLMD. Positive. Began IV Rocephin and Ketek Mar 05.
All symptoms fluctuated then declined.
Speech: tongue slow and resonance poor. Balance has declined.
I go to speech therapy and PT; both help maintain strength.
Sept 05 switched to IV Zinacef.
Stopped all abx in Nov per LLMD.
Am now walking with a quad cane and have a transport chair for shopping.
In Nov tested + for babesia. Was on Mepron and Diflucan and Zithro.
As of 2 wks ago, I am back on Zinacef along with Malarone, diflucan, Zithro and tindamax. Too soon to tell.
Yesterday, 2-27-06, I saw a neuro at Mt Sinai who said it was ALS not PLS; PLS doesn't affect speech so he says. Said he doubted it was Lyme.
Columbia neuro adamant not Lyme.
I have seen 3 very distinguished LLMDs who have all recommended treatment and I am following their recommendations. Thanks, Lou.
Disheartened, I can see why you chose that nickname; my heart just goes out to you.
Outstanding details of when/where/results from your visits & testings.
Talk about the runaround by these specialists.
Praying that God will guide you in the right direction for the "correct" illness that you are trying to fight.
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Ask yourself what can a neuro DO for you. They know that ALS can not be cured doing the things they do. If they have taken all of the pictures and have determined you have no other cause for your symptoms, stay away from them and seek help for the disease you now KNOW you have -LYME. Lyme can be cured, but it takes a lot of time and the right abx. Also, be sure to have your doctor check your blood viscosity for "sticky blood" which could cause cloting.
Do the detox and add the supplements and stay positive. It is hard to accept that so many very smart doctors like your neuros could be wrong, but they are and you must survive to prove it.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
You may want to take a peak at " eric is winning " book about a healthy lifestyle and ALS. De-tox etc....
Posts: 408 | From NY | Registered: Jan 2006
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posted
Betty G....I too am seeing a Neuro at Mt Sinal. DR Mark S. Is that who you see??
Posts: 408 | From NY | Registered: Jan 2006
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hello, Disheartened!!
Please check your Private Mesaages. A success story for you.....
Healing smiles.....lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Disheartened,
I presented with ALS symptoms.
Spots on the brain are not consistent with ALS. ALS also cannot be dx'ed without positive EMG results. The neuros you have seen are quacks, you don't have ALS.
You are positive for Babs and Lyme and not getting better. Get tested for more co-infections, specifically Bartonella and Mycoplasma.
ALS presentations take a long time to get improve. Stick with the LLMD's and if they stop listening, go get a new one.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
There was a big article in the WSJ today about MS being diagnosed much more in children. When I read the article, I kept thinking......I wonder if these kids have Lyme instead? Sure sounded possible to me.
lightfoot, please message me a good story. I need one.
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