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Hi all, this is my first post and sorry if I ramble a bit. This will also be quite long because I want to make sure you get all the information I have. And obviously it would be nice for people to continue their own research and add to the knowledge-base!
I have a family member diagnosed with ALS. She's now at the point where she's lost her speech. My skill is research and I'm quite good at finding clues and putting things together (if I say so myself!) This will be mostly on Lyme, but I will bring it back to ALS, so bear with me
Let me explain that I had clinical signs of Lyme disease earlier this year after a tick was removed from my side. I was given 10 days of Doxycycline, a tetracycline, and after I continued to have neural issues (mainly a headache which felt like heavy pressure on the top of my head all day), I was transitioned to a different antibiotic called Ceftin, a cephalosporin.
This did the trick and the headache miraculously disappeared within a day or two on the new drug.
I stayed on Ceftin for about a month, and the prescription ended. The headache came back shortly after I stopped. I begged the doctor to continue the Ceftin, but she believed after 1 month of antibiotics, I was cured. The headaches were unrelated and it was all anxiety related (according to her).
Before this, I was in perfect health. After the tick bite I experienced arthritic symptoms, muscle cramps that made me jump out of bed, a constant inner shakiness like a tremor, and the constant headache which was the worst symptom. I knew at that point I had to do my own research and doctor myself.
Now that I had experienced this disease, I began to focus my research to save my own life.
As an aside, I have a family member diagnosed with ALS who lives in the north east US, an area endemic with Lyme. I came across research linking ALS and Neuroborriella (neural-lyme), and began to notice the striking similarities.
I also read the research reports about Minocycline (another antibiotic) treatment impacting ALS. Many people tragically died sooner and had serious issues on it, so the study abruptly ended.
People have very similar reactions in late stage lyme disease, where the body can't handle the massive die-off and toxins produced and experience horrible side effects, sometimes death.
Then, I noticed another trial of IV Rocephin (Ceftriaxone) for ALS in the forum here! Imagine my surprise! This is now becoming the main staple of the arsenal for late stage Lyme!
The difference is Rocephin is not used as monotherapy in Lyme. Until recently, most late stage lyme sufferers were placed on antibiotics like Rocephin for a year or longer and steadily improved. But once the antibiotic was removed, many times, symptoms returned.
There seem to be 3 current hypotheses in Lyme treatment:
1) Lyme spirochetes grow into bio-films. These are similar to plaque on your teeth. A giant matrix of various bacteria that protect each other inside a gel. Once they are hidden deep inside this protective gel, it is very hard for drugs to penetrate. So, as long as you take the drug, it kills the free floating bacteria, but once its removed, the ones left in the biofilm continue to multiply again. Certain antibiotics like doxycycline are better at penetrating biofilms. Research is on-going as to how best to break up bio-films. They are now thought to be a persistent concern in many afflictions.
2) Lyme changes into various shapes. Certain antibiotics kill the Lyme spirochete in 1 shape, but it can turn into a tight ball shape called a cyst where most antibiotics can not penetrate. Once the antibiotic is stopped, it reverts back and once again continues its destructive path. This is why the antibiotic is combined with something called a cyst-buster. The cyst-buster class of drugs are the -azole antibiotics. The drug of choice is Tindazole (tindamax) or Flagyl (worse side effects than tindamax, but cheaper).
Now what is interesting about the -azoles is that they are both antibiotics as well as anti-protozoal. People taking it for lyme assume its helping because it lowers the bacterial load of cysts. It does seem to help a lot of people in combo with an antibiotic like Rocephin, but I wonder if it helps for other reasons and the philosophy is wrong.
This brings us to hypothesis 2.
3) Lyme spirochetes cause problems but there is an underlying parasitic/protozoal infection. This parasite protects the lyme, using the spirochetes as a food source or as some other symbiotic relationship.
This is cutting edge currently, but a doctor found a parasite called FL1953 in many ALS/MS/Lyme patients. It just recently was mapped genetically and seems to be a protozoa.
Now, this is where I link hypothesis 2 and 3 in my mind.
Remember I mentioned that the -azoles are both an antibiotic (kills the cyst form) as well as being anti-protozoal?
What if people are improving not only because it kills the cysts, but also because it kills the symbiotic protozoa? What if long term-antibiotics by themselves killed the Lyme bacteria, and over the long run, starved off some of the protozoa and this explained the improvement? But you can't santize the body of bacteria, so once the antibiotic was stopped, the protozoa continued to add to the lyme population?
It is theoretical so far obviously, but, many lyme docs are now going after the protozoal infection even before treating the lyme and are having fairly good luck. Unfortuntely they are using the blunt -azoles which have some side effects.
BUT, now that we know about this protozoa, we have a better tool to go after it.
This drug has been around for over 30 years and is a considered a wonder drug in many countries. It is given away for free by Merck in Africa as a sign of good will. Farm animals are treated with it in this country for parasites, and over 20million children in Africa have been dosed. Side effects are minimal in healthy children and adults.
This "wonder" drug is called Ivermectin. Its tradename is "Stromvectol" for humans. It is used for various parasitic infections, scabies and river blindness are the main uses. In animals, heartworms and other worm/nematode-based infections.
It also comes as an injectable for animals in farm stores dosed by weight (though package instructions/med journals also state that the injectable can be taken orally, and an apple-flavored horse paste ). I am not suggesting anyone take the animal-based formulations, but the injectable would be the best as far as purity after the Stromvectol and has been used in a pinch in other countries. Verify that it ONLY contains Ivermectin, not other de-wormers.
Unfortunately there are politics in the US as far as treating parasites. The joke is that parasites need a passport to get into this country. This is why doctors in the US are still using Tindazole instead. Though, Tindazole is also a good option since it is antimicrobial as well, so you might get a double whammy there, so I'm not sure which is the better option.
Interestingly, I even found a filed-patent for treating ALS using Ivermectin. It seems to act as a neuro-protectant as well.
What I can tell you is my 1-datapoint. I took it for my Lyme disease symptoms and after 2 doses, I felt about 85% better. Even without an antibiotic. The headaches disappeared. I still have a bit of shakiness and arthritic like symptoms, but nothing intolerable. And I haven't taken another dose in at least a month. Still feeling good, knock on wood.
If you search Lyme forums, many people take it weekly for long periods of time. The risk seems minimal, but I am not sure in ALS. The main concern is liver toxicity. So, please let your doctor know, and have your liver levels checked periodically.
The minocycline trial would scare me from trying anything experimental, but, I'd love to see an actual trial take place. If you live in the NorthEast, somewhere Lyme is endemic, I'd consider this therapy.
Sorry to go on so long, but, I wanted you to hopefully benefit from my research. I've voiced my opinion to my relative who lives in NJ with ALS (somewhere within the Lyme area), and she is unwilling to experiment, so I can't give you any news there. Please let me know if you'd like me to post any sources from my research. And if anyone does try any of this, you're on your own in completely uncharted territories. Though, if it does seem to help, Lyme might finally be implicated in non-familial ALS a cause (or this new fancy protozoa)!
I wish you all good health!
I have a family member diagnosed with ALS. She's now at the point where she's lost her speech. My skill is research and I'm quite good at finding clues and putting things together (if I say so myself!) This will be mostly on Lyme, but I will bring it back to ALS, so bear with me
Let me explain that I had clinical signs of Lyme disease earlier this year after a tick was removed from my side. I was given 10 days of Doxycycline, a tetracycline, and after I continued to have neural issues (mainly a headache which felt like heavy pressure on the top of my head all day), I was transitioned to a different antibiotic called Ceftin, a cephalosporin.
This did the trick and the headache miraculously disappeared within a day or two on the new drug.
I stayed on Ceftin for about a month, and the prescription ended. The headache came back shortly after I stopped. I begged the doctor to continue the Ceftin, but she believed after 1 month of antibiotics, I was cured. The headaches were unrelated and it was all anxiety related (according to her).
Before this, I was in perfect health. After the tick bite I experienced arthritic symptoms, muscle cramps that made me jump out of bed, a constant inner shakiness like a tremor, and the constant headache which was the worst symptom. I knew at that point I had to do my own research and doctor myself.
Now that I had experienced this disease, I began to focus my research to save my own life.
As an aside, I have a family member diagnosed with ALS who lives in the north east US, an area endemic with Lyme. I came across research linking ALS and Neuroborriella (neural-lyme), and began to notice the striking similarities.
I also read the research reports about Minocycline (another antibiotic) treatment impacting ALS. Many people tragically died sooner and had serious issues on it, so the study abruptly ended.
People have very similar reactions in late stage lyme disease, where the body can't handle the massive die-off and toxins produced and experience horrible side effects, sometimes death.
Then, I noticed another trial of IV Rocephin (Ceftriaxone) for ALS in the forum here! Imagine my surprise! This is now becoming the main staple of the arsenal for late stage Lyme!
The difference is Rocephin is not used as monotherapy in Lyme. Until recently, most late stage lyme sufferers were placed on antibiotics like Rocephin for a year or longer and steadily improved. But once the antibiotic was removed, many times, symptoms returned.
There seem to be 3 current hypotheses in Lyme treatment:
1) Lyme spirochetes grow into bio-films. These are similar to plaque on your teeth. A giant matrix of various bacteria that protect each other inside a gel. Once they are hidden deep inside this protective gel, it is very hard for drugs to penetrate. So, as long as you take the drug, it kills the free floating bacteria, but once its removed, the ones left in the biofilm continue to multiply again. Certain antibiotics like doxycycline are better at penetrating biofilms. Research is on-going as to how best to break up bio-films. They are now thought to be a persistent concern in many afflictions.
2) Lyme changes into various shapes. Certain antibiotics kill the Lyme spirochete in 1 shape, but it can turn into a tight ball shape called a cyst where most antibiotics can not penetrate. Once the antibiotic is stopped, it reverts back and once again continues its destructive path. This is why the antibiotic is combined with something called a cyst-buster. The cyst-buster class of drugs are the -azole antibiotics. The drug of choice is Tindazole (tindamax) or Flagyl (worse side effects than tindamax, but cheaper).
Now what is interesting about the -azoles is that they are both antibiotics as well as anti-protozoal. People taking it for lyme assume its helping because it lowers the bacterial load of cysts. It does seem to help a lot of people in combo with an antibiotic like Rocephin, but I wonder if it helps for other reasons and the philosophy is wrong.
This brings us to hypothesis 2.
3) Lyme spirochetes cause problems but there is an underlying parasitic/protozoal infection. This parasite protects the lyme, using the spirochetes as a food source or as some other symbiotic relationship.
This is cutting edge currently, but a doctor found a parasite called FL1953 in many ALS/MS/Lyme patients. It just recently was mapped genetically and seems to be a protozoa.
Now, this is where I link hypothesis 2 and 3 in my mind.
Remember I mentioned that the -azoles are both an antibiotic (kills the cyst form) as well as being anti-protozoal?
What if people are improving not only because it kills the cysts, but also because it kills the symbiotic protozoa? What if long term-antibiotics by themselves killed the Lyme bacteria, and over the long run, starved off some of the protozoa and this explained the improvement? But you can't santize the body of bacteria, so once the antibiotic was stopped, the protozoa continued to add to the lyme population?
It is theoretical so far obviously, but, many lyme docs are now going after the protozoal infection even before treating the lyme and are having fairly good luck. Unfortuntely they are using the blunt -azoles which have some side effects.
BUT, now that we know about this protozoa, we have a better tool to go after it.
This drug has been around for over 30 years and is a considered a wonder drug in many countries. It is given away for free by Merck in Africa as a sign of good will. Farm animals are treated with it in this country for parasites, and over 20million children in Africa have been dosed. Side effects are minimal in healthy children and adults.
This "wonder" drug is called Ivermectin. Its tradename is "Stromvectol" for humans. It is used for various parasitic infections, scabies and river blindness are the main uses. In animals, heartworms and other worm/nematode-based infections.
It also comes as an injectable for animals in farm stores dosed by weight (though package instructions/med journals also state that the injectable can be taken orally, and an apple-flavored horse paste ). I am not suggesting anyone take the animal-based formulations, but the injectable would be the best as far as purity after the Stromvectol and has been used in a pinch in other countries. Verify that it ONLY contains Ivermectin, not other de-wormers.
Unfortunately there are politics in the US as far as treating parasites. The joke is that parasites need a passport to get into this country. This is why doctors in the US are still using Tindazole instead. Though, Tindazole is also a good option since it is antimicrobial as well, so you might get a double whammy there, so I'm not sure which is the better option.
Interestingly, I even found a filed-patent for treating ALS using Ivermectin. It seems to act as a neuro-protectant as well.
What I can tell you is my 1-datapoint. I took it for my Lyme disease symptoms and after 2 doses, I felt about 85% better. Even without an antibiotic. The headaches disappeared. I still have a bit of shakiness and arthritic like symptoms, but nothing intolerable. And I haven't taken another dose in at least a month. Still feeling good, knock on wood.
If you search Lyme forums, many people take it weekly for long periods of time. The risk seems minimal, but I am not sure in ALS. The main concern is liver toxicity. So, please let your doctor know, and have your liver levels checked periodically.
The minocycline trial would scare me from trying anything experimental, but, I'd love to see an actual trial take place. If you live in the NorthEast, somewhere Lyme is endemic, I'd consider this therapy.
Sorry to go on so long, but, I wanted you to hopefully benefit from my research. I've voiced my opinion to my relative who lives in NJ with ALS (somewhere within the Lyme area), and she is unwilling to experiment, so I can't give you any news there. Please let me know if you'd like me to post any sources from my research. And if anyone does try any of this, you're on your own in completely uncharted territories. Though, if it does seem to help, Lyme might finally be implicated in non-familial ALS a cause (or this new fancy protozoa)!
I wish you all good health!