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Old 08-07-2010, 01:42 PM #45 (permalink)
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Join Date: 2009
City: virginia beach
State: va
Country: US
Diagnosed: 09/2009
Posts: 2
pat10555 is on a distinguished road
Default Re: Connection Between ALS and Lyme disease?

Hi All,

I was bitten by a tick in August 2008. My doctor at that time said it wasn't Lyme because the rash I had wasn't bull's eye. A week and half went by, then I got a bad headache, stiff neck, and the worst sore throat I've ever had in my life. By mid-September, I had slurred speech and extreme fatigue - and it was down hill from there.

A good test for Lyme is not yet available in most states - not a reliable one anyway. I had tested negative for Lyme several times, but I suspected Lyme anyhow, thanks to Lyme-infected friends nagging at me to continue testing or try a different lab. I could not find an infectious disease specialist who knew much about Lyme.

So I took matters into my own hands. I took a few days' worth of amoxicillin to send any bacteria that might be present into hiding, and stopped mid-course, because I wanted to see if they would come out of hiding after a few days. They did. So I found spirochetes in my own blood by using a phase contrast microscope, sticking my finger with a lancet and smearing on a slide.

The tests used to detect Lyme in most places look for indirect evidence like DNA fragments and antibodies. But the problem that is overlooked with that approach is the germs' ability to evade the immune response. (Also, if you were infected with Lyme a long time ago and cleared it, you could have DNA fragments mixed in with your own DNA - that does happen.) If the body's immune systems can't find it, they can't produce the antibodies to it. I hope I am saying this right...

Lyme is well-known to mimic other neurological diseases. So if you or someone you know has a neurological disorder like ALS, MS, Alzheimer's, Parkinson's, or etc., always get a Lyme test from a lab in 1 of the 4 states that have passed laws to protect Lyme patients and the doctors treating them. Some savvy neurologists make it a practice to test as part of differential diagnosis procedure.

You don't have to have a rash, and you can get it in other ways besides a tick bite. Lyme can be transmitted sexually, from infected mother to baby in utero, and the organisms can also be transmitted via breast milk. In addition, other vectors have recently been identified. Unfortunately, the infectious organisms have also been found in mosquitoes, fleas, and spiders - and in the blood of some lizards. However, after they have been hosted by the lizard, they don't seem to do harm to the next host if that host happens to be a human. <-- I hope science labs are looking for the clues to that - just as people with end stage renal disease dialyze their blood through filters -- maybe a filter like that with the chemical equivalent of lizard's blood and/or immune cells can be used to pull out germs, and so forth).

People infected with Lyme disease in its earliest (acute) stage have the best chance of being able to completely clear a Lyme infection - which, by the way, includes usually multiple infections, not just the spirochetal disease. Lyme disease is the name for a cluster of infections - and Borrelia burgdorferi (Bb) is the pack leader. It is a very clever organism.

Other diseases that act as co-infectors are viruses, prions, and fungal forms. Also, Bb carries plasmids and exchanges them with the immune cells responding to the infection... so Bb is altering the immune response, and perhaps with its payload of plasmids is trading genes with other tissues -- maybe this is the way that it is altering our DNA. Where there is a Lyme connection with ALS, and other neurological disease, it would not surprise me to find out that fALS is the result of Bb-modified DNA being passed along through generations by the original Lyme-infected host.

I've been reading research papers about its life cycle, and the way it behaves in the tick's gut as well as in the human host. It learns to co-exist and communicate with its co-infectors while in the tick's gut. For example, the human host's immune system responds to the bite with fibrin. Inferring from how the blood thickens up with fibrin - Bb leverages that by coating itself and its co-infectors with it, and it is thought to also use the 'slime' to facilitate communication with its co-infector cohort. Fibrin slows down the migration of the germs from the site of initial infection too.

It first attacks the immune system of its human host. It seems to be able to "read" the human immune response potential, and has found a way to leverage that response in a way that enables it to avoid detection. The innate immune response comes first, and includes inflammation that causes the rash, fever, fatigue and etc. BUT, the problem is that the first responders to the site of the infection cannot send specific information to the acquired (or adaptive) immune system because the Bb can and does alter its outer protein surface to look like the host's self!

Lyme disease confers no immunity to its hosts. You can be re-infected without limit, and each time there is more damage done.

The Bb spirochete has 3 known forms:

The Vegetative form - This is the typical spirochetal form - a corkscrew kind of shape that is about 3 times longer than the diameter of the normal red blood cell. It has the typical bi-layer cell wall system that has "docking stations" for the immune cells to recognize. Those are the ones that are most vulnerable to treatment with antibiotics - and they are most vulnerable when caught trying to reproduce. Spirochetes enter tissues prefering that to the blood / serum. They gravitate toward fatty tissue (liver, brain), connective tissue (large joints such as knees), and the heart. Neuroborreliosis is the name of the disease once it's gone into the brain. They "drill" into tissues, and one of the products of its life processes is neurotoxin.

The L-form, where the spirochete sheds its outer wall aka cell wall-deficient), leaving no trace of itself anywhere for the immune system to find. This is a very virulent aspect of Bb. It still can drill into tissue - but guess what - all the tissue knows is it's disrupted, so the innate immune system mounts a very vigorous defense, sending the immune system into overdrive. But since there's no outer surface protein, it can't find any information to send to the acquired immune system to send reinforcements. So there is a constant, heightened response, and the Bb start living large in its host.

The third form is the Cyst. In this state, the spirochete suspends almost all of its life processes, except for the one that tells it if it's safe to revert to one of the other forms. Bb can exist indefinitely in this form in its host, and won't cause symptoms either. So there can be long periods of latency or dormancy. For people unable to completely clear the infection, sending the Bb into the encysted state and keeping them there is a worthy objective!

The disease is already endemic in Mexico - and our neighbor to the north is having the same under-reporting and under-diagnosing problems as we here in the USA are having. So if you have a neurological disease or know someone who has one, please tell them to look for live evidence of an active Lyme infection the way I did ASAP!

CDC reports about 25,000 Lyme infections per year. Their criteria for Lyme are very restrictive. But Lyme presents differently because of the variation in immune repsonses. So the actual number of infections might be 10 times that.

I am working on a survey form to collect information on the co-incidence of Lyme + other neurological diseases so we can give science and mainstream medicine good reason to always double- and triple- check for Lyme in a reliable way, and to encourage them to interpret the equivocal result that tells them they should treat prophylactically. I will come back and let you know where to find the form in a few weeks. I still need to build the web page and find someone to host it. Then I'll build the analytics engine and feed it all back in chart form by geography, and many other criteria. Feel free to suggest what you would like to see.

One more thing - if you are treating Lyme and have bulbar symptoms, remember to read up on how bulbar patients have fared in drug trials where high doses of antibiotics for long durations.

Wishing you all complete recoveries!
IslGrrl
(Pat)
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