Bitten by a tick a month before

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I know this thread is a few years old but hopefully someone can answer a question for me.

My mom was recently diagnosed with ALS after relatives noticed her slurred speech. She had also been complaining of a tickle in her throat and chronic post-nasal drip for some time before that. I've encouraged her to get tested for Lyme disease as well.

Would EMG and NCV tests be able to rule out Lyme disease, or would the results for Lyme and ALS be similar? I know my mom had one or both tests done as part of her diagnosed.

Also, does anyone here happen to know of a good Lyme dr in eastern PA, or point me towards a good resource? The LDA website had nothing in that area.

Thanks,
Marc
 
Marc, welcome to the forums. Sorry to hear about your mom.

I have heard of a few cases of people diagnosed with ALS who turned out to have Lyme, so I imagine that the test results can be similar. It can't hurt to be tested just to set your mind at ease if nothing else. I insisted on being tested for Lyme as well as a bunch of other diseases, all negative unfortunately. I wouldn't pin much hope on it but as I said, it can't hurt.
 
thats great news that they caught it .im so glad it wasnt als godbless
 
Marc, I know it's been a while since your post, but I just registered today and saw it for the first time. My entire family is being treated for Lyme and we've been at it for one year. The only definitive, reliable test for Lyme and Co-infections is done through the Igenex Labs in Calif. Well worth the effort and expense (generally not covered by insurance). ALS symptoms can indeed actually be Lyme disease manifesting itself in this particular group of symptoms called ALS...in other words, Lyme disease may truly be the root cause. No longer are tick bites the only way Lyme can be contracted, but through mosquito, biting flies, or any biting, sucking insects. Lyme is very immunosuppressive, so the usual tests that most MDs prescribe are very unreliable (Elisa). Also, all co-infections must be tested: Ehrliccia, Babesia, and Bartonella, as the same insects that carry Lyme (actually called the Borrellia Spirochete Bacteria; commonly called Lyme because first case was diagnosed in Lyme, Connecticut.) Unless the co-infections are properly identified and treated, Lyme becomes more difficult to treat. The good news is, if Lyme is identified, it is very treatable through the help of the appropriately knowledgable doctors. Our wonderful Lyme-literate doctor is available in Orlando, FL but also available through phone consults and Skype.
 
The same insects that carry Lyme frequently carry other infectious bacteria (Ehrliccia, Babesia, Bartonella), consequently the full panel must be tested through Igenex Labs in California.
 
I thought for sure my DX was going to be Lyme, I have always spent a lot of time in the woods, and have pulled thousands of them off of me! I'm still not totally convinced that I don't have it, but I did get treated for it for 4 months.
 
Hi D. Thanks for the info on Lyme testing. It would be great to get your Dr's contact info. (Also sent you a PM.) Right now my Mom is having trouble even getting to see a Lyme specialist in PA because none of them will accept new patients without a referral, and her neurologist refuses to give her one! He says it would be a waste of her time and money because there is no possible way his diagnosis is wrong! He says the one symptom that makes him certain is an involuntary twitching of the tongue, and that no other condition produces that symptom.

In any case, I'm hoping I can find a Lyme specialist in my area (northern VA) who will see my mom without a referral.

Just an update on my Mom's condition -- her speech has gotten significantly worse just in the past few months, but she still shows no sign of physical weakness or other muscle issues. It has strictly affected her speech and swallowing so far. The symptoms were barely noticable in January and just a few months ago it was only really bad late at night, so we are pretty concerned with what seems like a rapid down-turn in the last two months. It's now difficult to understand her even at the best of times. :(
 
Just a question, does Lyme cause Bulbar symptoms or limb symptoms or can it cause both? I have been asked by friends about Lyme too but I am well beyond believing that my ALS diagnosis is anything but that.
 
Just a question, does Lyme cause Bulbar symptoms or limb symptoms or can it cause both? I have been asked by friends about Lyme too but I am well beyond believing that my ALS diagnosis is anything but that.

Yes Barry, it can cause bulbar symptoms. I'm like you though. My symptoms are so ALS
! Theres just one thing that threw me for a loop a few weeks ago. I don't know if it is ALS associated, but a few weeks ago I got a staph infection that developed from a sinus infection. Its hard for me to tell sinus infections, because I do not get any noticeable drainage. Anyway...I was borderline of being admitted to the hospital for IV antibiotics. My Dr put me on 2 heavy duty oral antibiotics. the infection cleared up quick, but what I did notice was my als symptoms improved drastically! I was walking great, and felt stronger. It was not my imagination. That being said, I did not notice much change in my bulbar symptoms. All I know is...it definately had some effect on my symptoms! I told my GP, and my Neurologist assistant. They must think I'm nuts because I did not hear anything back from them. I have a appt in a few weeks with my Neurologist, and I will be bringing it up. I wish they would atleast try the antibiotics on someone else to see how it effects them.
 
I conferred with my doctor today who is an amazing specialist dealing with severe Lyme patients every day and seeing people go from death's door back to regained health! She feels the FIRST thing to do should be the full panel Igenex testing for Lyme and co-infections regardless of your diagnosis or lack thereof. She says Lyme will most definitely by there! Lyme is a decective disease that can manifest in many different body systems in many different ways. According to her, Lyme is pandemic all over the USA and is not being dealt with appropriately or knowledgeably by too few doctors. Even the infectious disease specialists are frequently not Lyme literate. I am one of those people that has been brought back from the brink and when I hear your symptoms and lack of effective treatment or recovery, it reminds me of what I and my family have gone through. Please consider, read, and re-read my previous post.
 
Phil...think of what you are saying...You've pulled how many off you? I think you may have your answer. Stay thirsty, indeed. Stay wide-eyed. Stay open.
 
I know this thread is a few years old but hopefully someone can answer a question for me.

My mom was recently diagnosed with ALS after relatives noticed her slurred speech. She had also been complaining of a tickle in her throat and chronic post-nasal drip for some time before that. I've encouraged her to get tested for Lyme disease as well.

Would EMG and NCV tests be able to rule out Lyme disease, or would the results for Lyme and ALS be similar? I know my mom had one or both tests done as part of her diagnosed.

Also, does anyone here happen to know of a good Lyme dr in eastern PA, or point me towards a good resource? The LDA website had nothing in that area.

Thanks,
Marc

I made the Lyme's argument with my neurologist, and he said if I have doubts, that he could do a spinal tap on me. I'm not sure if that rules out Lyme's, or if it confirms als..
 
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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