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Old 03-05-2014, 12:45 PM #1 (permalink)
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Default ALS Lyme Connection, Personal Story

Before everyone jumps to conclusions, this is not another post about someone convincing everyone they have lyme and not ALS. I just need to get my twin brother's story out there since his passing a few months ago.

My name is John and my twin brother Scott was diagnosed first with lyme disease 3.5 yrs ago and then ALS immediately after. My brother Scott was 28 yrs old at diagnosis. Here is his story.

Scott was in unbelievable shape. He ate healthy, worked out daily and was in amazing shape. Muscular, healthy, strong and extremely athletic. Scott was a school teacher for a few years, a football and baseball coach and then he became a New Jersey state trooper.
Scott loved to hunt and fish. He was in the woods constantly and where we live, there is a very high concentration of lyme disease. Hunterdon County NJ is one of the highest lyme populations in the country and this is where Scott worked, hunted and fished. Always finding ticks on him, never did we think lyme would turn into something like this.

About 3.5 years ago Scott started with the typical lyme symptoms, rash, headache, fatigue, ringing of the ears, joint pain, severe neck stiffness, constantly sweating, etc. He went to the doctor which he tested for lymes, negative, yet prescribed Scott the two week cycle of oral lyme antibiotics. This did not make Scott any better, instead he starting getting worse. A few months later he started getting muscle twitching down his arm and weakness in this arm. He started going to neurologists who couldn't figure out what was wrong. After many tests, they labeled him with ALS. These doctors said lyme would not cause this, even though his age didn't fall into the "typical age range" of ALS.

Our family knew that this ALS or MND started with lyme disease. We saw his rash and overwhelming amount of symptoms that were consistent with lyme disease. His rash came and went numerous times over the course of the next year. Scott then sent his blood work to multiple laboratories where he finally tested positive for Lyme disease on numerous occasions. The doctors still would not treat him for lymes because he already received the two week treatment of oral antibiotics and because these doctors said his MND was unrelated to the lyme.

Scott went to several, out of network, doctors for the next two years. He received numerous cocktails of IV antibiotics including rocephrine. None of these antibiotics made him better and he kept getting worse.

Scott passed away a few months ago after a 3.5 yr battle with MND. My family and I still believe that lyme disease caused this. He suffered tremendously for 3 years, in every aspect, mentality and physically. It was hell watching my youthful twin, dying of some unknown disease.

The reason I write this is to get all this off my chest but also to inform everyone that Lyme does cause ALS. I have seen it first hand. My brother was way too young for the disease, no in my family has ever had it. His lyme symptoms started a couple months before his MND symptoms. Scott was only 31 years old at his death. I believe that lyme will cause an autoimmune response within certain peoples bodies. This auto immune response will cause peoples bodies to react in different ways to find the disease. I believe lyme disease triggered Scott's MND once the spirochetes of the lyme got into his nervous system. The ALS/MND was a auto immune response to fight off the lyme infection.

Doctors know nothing about ALS. No cure, no treatment, no triggers. So why can't lyme be a cause for ALS? Why won't more doctors or researchers look into this? There is a lot of info on the internet about the lyme als connection, and Im sure a lot of you think it is BS. Im here to tell you I personally dealt with this through my brother and know that Lyme disease did cause this and it is a major issue in the medical community. My parents paid out of pocket for all of scotts treatment. Scott had great insurance, yet they would not cover any of his expenses due to the fact that his doctors said he had als and not lyme.

Im not trying to ramble on, but I need the community to know that lyme disease is serious and can lead to MND. I don't know if Scotts disease could of been stopped or prevented, but there is a need for more research. More doctors and people in the community have to be aware and have more of a open mind of a disease they don't even have a grasp on. My brother was way too young to die and way to young to develop this disease. Lyme disease can cause this horrible disease. My brother was proof.
This is just my story. i appreciate anyone who took the time to read this and apologize if i offended anyone. My family and I are still in shock over my brothers diagnosis, illness and death. Just doesn't make sense especially when lyme disease really did start everything.
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Old 03-05-2014, 02:30 PM #2 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Hi John,

Thank you for sharing Scott's story and your thoughts about the ALS/Lyme connection. I am so sorry for your lost. ALS is a cruel and relentless disease, and it's especially heartbreaking to hear the stories of vibrant, healthy young people such as your twin who endured and then died from such a awful illness.

I know very little regarding a connection between Lyme/ALS, but I have witnessed first-hand how tragic progressive neurological diseases can not only devastate a family emotionally, but financially as well.

Sadly, your brother was fighting a fatal neurological disorder. Whatever the trigger or cause of the disease, the end result was the same . . . the untimely loss of your beloved sibling! I'm curious why your brother's insurance (thru NJ Trooper job?) would "not cover any of his expenses due to the fact that his doctors said he had als and not lyme."

Why would his Trooper insurance not cover the cost and expenses associated with his medical condition? It just sounds so wrong to me.

Again, I am so sorry for your family's loss. I pray you will find resolution and peace, and during the process I hope you can continue to raise awareness and spur change.

-EZ in TX
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Old 03-05-2014, 06:38 PM #3 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Sorry for your tragic loss, and for the detail of your story, I hope it did help you to 'tell it'.

I think one of the biggest problems with pinning the cause for ALS is that there is still no common denominator.

Not everyone who contracts Lyme disease develops ALS, in fact not very many. Not very many PALS have Lyme disease. My husband did not have Lyme disease, not by any symptoms, and all blood work for Lyme was negative.

So, whilst your suspicions may be correct, and the Lyme infection may have triggered ALS in your brother, it can't be taken for a leap across the chasm to then state that Lyme causes ALS.

Sadly it is hell watching our loved ones being afflicted by ALS. My husband was vibrant and active and has been eaten nearly away, so I know the heartache of watching this happen.
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Old 03-05-2014, 07:08 PM #4 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Lyme disease is not nice especially if it takes a while to be diagnosed. For many years scientist denied that there is such a thing as chronic Lyme disease. Lyme disease is caused by a spirochetal bacteria, much like the bacteria that causes syphilis. This bacteria is like a corkscrew that can get out of the bloodstream and move to different parts of the body. The problem with these spirochetes is that they are able to excrete a protein that protects it from the bodies immune system and or antibiotics, and it also makes it hard to detect it. Only in the last few years have they been able to test for it reliably, and still there are few labs that actually test that way. Left untreated, later symptoms may involve the joints, heart, and central nervous system, and be difficult to treat. I have a step niece that suffers greatly from Chronic Lyme disease even after hundreds of thousands of dollars spent on treatments. There is an excellent film called "Under My Skin" that explains the politics that are behind the difficulty in diagnosing and treating the disease.
I am curious if your twin had an autopsy to investigate Lyme versus ALS. Most people that are being diagnosed for ALS are tested for Lyme disease, and syphilis as both can effect the brain and central nervous system. There are still so many unknowns about both diseases, and both are devastating.
I am so sorry for your loss.

Paulette
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Old 03-07-2014, 04:47 AM #5 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Can u get symptoms like twiching and atrophy from lyme?!
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Old 03-10-2014, 07:13 PM #6 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

So sorry for your loss

However, this instance appears to fall into trying to make sense of something unfathomable.
I don't believe that there is science in this
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Old 03-11-2014, 01:37 AM #7 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

I saw a news clip of a woman who was trying to raise awareness of Lyme disease after her husband had been misdiagnosed with ALS for 2 years. He had taken many many Lyme tests and they kept coming back negative until that one day. She explained in great detail the reason for this and it definitely made me think twice about this possibility to the point I've done some extensive research behind this. My personal opinion now, is that Lyme does contribute to some ALS diagnosis but I also believe there are still unknown reasons for other PALS. But then again, who really knows?
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Old 03-11-2014, 03:39 AM #8 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

There is a difference between science and coincidence. Eastern long island is a huge Lyme hot spot. I know of 2 others with als and all of us have come back repeatedly negative. That statistic has no scientific merit...it is purely coincidence but unrelated.
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Old 03-11-2014, 05:42 PM #9 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Quote:
Originally Posted by joy2024 View Post
Can u get symptoms like twiching and atrophy from lyme?!
Yes, you can. Neurological lyme.
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Old 03-12-2014, 08:57 PM #10 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

I actually believe that many of our "twitchers" on the forum need to look into Lyme.

My husband was hoping, hoping he had Lyme when he was first diagnosed with ALS. He went thru the full treatment for about 18 months. alas--it is not Lyme for him but ALS.

ALS is not always Lyme and Lyme is not always ALS.
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Old 03-15-2014, 06:57 PM #11 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

Unfortunately, the only connection between Lyme disease and ALS is the one created by the unethical labs and doctors who prey on extremely vulnerable patients who are willing to pay a ton of money for unnecessary treatments. Every honest scientific analysis has shown that Lyme disease does not cause ALS. First of all, Lyme frequently appears in clusters, while ALS clusters are extremely rare. If Lyme caused ALS, you would expect an ALS cluster corresponding to every Lyme cluster. Also, see Qureshi, et al, "Lyme disease serology in amyotrophic lateral sclerosis" (Muscle Nerve. 2009 Oct;40(4):626-8. doi: 10.1002/mus.21438.) There the authors tested 414 individuals with ALS at the Massachusetts General Hospital for Lyme disease. Twenty-four (5.8%) were seropositive, but only 4 (0.97%) had confirmed past immunoreactive infection. Two of the patients received ceftriaxone for 1 month without clinical improvement. Bottom line: Lyme disease was rare in 414 patients with ALS and was found "not likely to be causative." It's very tough to discuss Lyme with ALS patients, because everyone has a friend or relative who has been sold on Lyme, and you don't want to challenge people's beliefs or take away their hope, but ultimately it is important to protect ALS patients from predators. If a lab is diagnosing all of its patients with Lyme and asking you to pay them big bucks for treatments, don't trust them. Think about what they're doing--conning the most vulnerable patients in the world out of their money. Despicable! They are the worst kind of predatory frauds and, in my opinion, should be drawn and quartered.
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Old 03-17-2014, 09:49 PM #12 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

I had a friend who had lyme disease and did the normal treatment and then about a year later was hit with Guillian -Barre Syndrome. I dont know if you know anything about it, but it is really bad if not treated properly. Luckily he was after a year in a rehab hospital completely recovered, but a lot of people never recover, My point is the docs said is was because of the Lyme disease. It affects the muscles and use of them, I immediately thought of my friend when I saw your story, so sorry about your brother, my husband has ALS, has had for 3 1/2 years now.
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Old 03-18-2014, 06:20 AM #13 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

With both Lyme and ALS in our family, I've reviewed the literature purporting to connect them. The existence of Lyme, whether best characterized as acute, chronic or contagious (you can find advocates for each) does not suggest an etiology for ALS, for which EMG/NCS results, among others, differ significantly from those in Lyme. And as noted above, Lyme and ALS epi don't walk hand in hand. I am aware of at least one clinic that actively exploits the notion that ALS is really Lyme. You can find some of its dissatisfied patients on the Net.

We just don't have any reason to believe that the organisms that cause Lyme cause ALS as well. It's worth noting that the Lyme-is-everywhere crowd has some rather shady characters at its helm, including a doc who admitted to faking data in an AIDS study and was barred from receiving federal funds, not to mention its characterization of Morgellons (purportedly mysterious organisms under your skin, that extensive investigation has failed to reveal) as an infectious disease.

The self-pay labs that "diagnose" Lyme when no one else will...well, that's called cashing the check in return for a report that may comfort patients and profit others, but has not been validated in prospective trials. There was a recent Medscape article on one of the new tests for those interested. All in all, I'd rather see the etiology/treatment of ALS researched by a peer-reviewed, hypothesis-driven, don't-get-paid-more-for-a-certain result effort than the insider Lyme groups.

John, all losses from ALS are tragic and you have the empathy of everyone here.
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Old 03-18-2014, 02:06 PM #14 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

I am very sorry for your loss. I wish there were no diseases like any of these.

So far as ALS is concerned, it can happen at a young age such as the twenties. Stephen Hawking had it at 21 years. It frequently happens to otherwise healthy people.
It may be that the Lyme effected the CNS somehow triggering a start of ALS. Researchers know some things about it but there are many unknowns. I read Science Daily and a few others that discuss the science behind the disease process. Again, I am sorry for your loss. Take care.
 
Old 03-18-2014, 04:41 PM #15 (permalink)
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Default Re: ALS Lyme Connection, Personal Story

one thing I have found about ALS is none of it is "typical". We were told nothing about my husbands was typical. The more educated I get on the subject to more I see every case is it's own. One common thread seems to be very healthy active individuals getting struck with ALS.
Treatment for Lyme was part of the regiment we chose "just in case" as lyme is hard to pin down, as is ALS.
perhaps it is a fluke and your brother had both going on at once. I pray you find some peace of mind, loosing a loved one is hard on in it's own merit, loosing one so young and so very close as you two surely were must have a singularly deep hurt.
condolences
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