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Old 07-27-2012, 01:36 PM #1 (permalink)
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Default Symptoms may be Lyme disease

Hi, everyone!

I'm new here and I came to make a valuable contribution to your site - to help others - as well as to keep up on information about ALS myself because my disease could become ALS at any time.

Despite my symptoms of weakness, debilitating fatigue, numbness, falling, gait instability, blurred vision, swallowing difficulties, hoarseness, brain fog, and nighttime breathing issues requiring BiPap and oxygen, I could get no diagnosis. Oh, the money I spent on expensive invasive neurologic tests and labs - all inconclusive. What I am going to tell you here will, hopefully, save you the pain and cost I endured and, perhaps, point some of you, who persist in being undiagnosed despite extensive medical inquiry, to a correct diagnosis so you can be treated and, if not cured, at least improved somewhat.

Lets cut to the chase: Lyme disease is often misdiagnosed. It can imitate hundreds of other diseases such as ALS, MS, Parkinson, severe arthritis, Lupus etc. There are many strains of Lyme bacteria and, therefore, presenting symptoms can vary. However, all of us with Lyme do have debilitating fatigue. I saw a dozen neurologists and yet not one of them ever mentioned to me the possibility that I might have Lyme disease.

Google "ILADS" to find the International Lyme (and related diseases) website which is very informative. ILADS will tell you that Lyme is the fastest growing epidemic in the country. It is also a suppressed epidemic - don't hear much about it, do you? Lyme is in every state in our country now with new cases showing up faster than new HIV, west Nile virus, and avian flu combined. Be sure to watch Leslie Wermers' brief video on the ILADS website. She really tells it like it is and you will better understand what Lyme patients go through after viewing it. Though treated, she eventually died of Lyme.

The former President of ILADS, Dr. David Martz, was given a firm ALS diagnosis by "an expert ALS MD." As he lay dying in bed, the thought persisted in his mind that he might really have Lyme disease and he had the good sense to follow his own instincts instead of his ALS doctors' suggestions to "not fight it". He had an MD friend shoot him up with IV antibiotics which ended up saving his life because he really had Lyme disease, after all. You can read about this in the book called Cure Unknown by Pamela Weintraub. ALS and Lyme symptoms can be so similar!

Things you must know about evaluation for Lyme: (1) Lyme lab tests are highly inaccurate and can miss 60% or more of people who have Lyme. Negative Lyme test results are essentially meaningless - you can still have Lyme. Only positive results mean anything. If you are told you have "false positive results" (like I was) find yourself a Lyme-literate doctor ASAP for evaluation for Lyme! (2) Find a Lyme support group who will guide you to a "Lyme-literate doctor." Most doctors are clueless about Lyme disease and infectious disease doctors, in particular, have done much to block Lyme diagnosis. The infectious disease doctor I was referred to told me that I could not possibly have Lyme disease because "chronic Lyme disease does not exist." My referring doctor believed him so I lost years that could have been spent treating my Lyme disease. (3) Lyme diagnosis must be a "clinical diagnosis" not based on diagnostic tests, but on patient history and response to treatment. (4) Lyme is not rare or easy to cure: Lyme is a debilitating disease and a killer. As with cancer, some with Lyme beat their disease, while others die. (5) On autopsy, Lyme bacteria have been found in the brains of many who were diagnosed with ALS. (6) Unfortunately, we are not limited to having just one disease: You could have both, ALS and Lyme!

Finally, I suggest removing a sticky I found on this website suggesting that if we have not been properly diagnosed despite numerous medical tests, we are hypochondriacs - complete with a link to hypochondriac website! Not only is that link misleading and insulting, not only have we undiagnosed folks with debilitating symptoms heard this line of thought aplenty from our doctors and others, but this type of accusation can actually end up stalling or ending our search for what truly ails us! Yes, some of us may be hypochondriacs, but I feel the vast majority of us truly have an underlying cause for our symptoms which American medicine is failing to address. Convincing someone with a serious, yet undiagnosed disease, to deny his symptoms and accept the erroneous conclusion that he/she is merely a hypochondriac or a psych case in need of counseling, can cost lives! If you are going to allow this insulting sticky to remain on your site, you should at least add Lyme disease to the list of disease possibilities the sticky mentions (since Lyme disease was not mentioned there and it should have been). Lyme disease is often the last thing doctors consider and they usually erroneously rule it out with a negative Lyme lab test. I suggest all you undiagnosed people consider the possibility of Lyme disease early in the game - since it can imitate ALS, but can be treated and slowed down. Be sure to only go for evaluation to a good "Lyme-literate doctor" which you can find through a Lyme support group.

Your health and your life may depend on your actions in this regard. Best of luck to all of you!

KeyLymePie
 
Old 07-27-2012, 02:18 PM #2 (permalink)
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Default re: Symptoms may be Lyme disease

been there, done that... still ALS.
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Old 07-27-2012, 02:32 PM #3 (permalink)
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Default re: Symptoms may be Lyme disease

KeyLymePie is a spammer...
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Old 07-27-2012, 03:08 PM #4 (permalink)
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Default re: Symptoms may be Lyme disease

Lyme disease is cured by near lethal doses of an-biotics (if it is caught soon enough)
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Old 07-27-2012, 03:43 PM #5 (permalink)
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Default re: Symptoms may be Lyme disease

KLP,

You forgot to mention IGenex and Dr. Nick Harris the owner of the ILADS website you're insisting we visit. And your chosen screen name?
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Old 07-28-2012, 11:07 AM #6 (permalink)
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Default re: Symptoms may be Lyme disease

We want a delete button that says "You are nutz "
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Old 07-28-2012, 12:16 PM #7 (permalink)
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Default re: Symptoms may be Lyme disease

I love it when someone comes on here, for the first time no less, and implies that we are all little sheep for not checking something out... as I said before, I went down that road, been there, done that... I would guess that most PALS who think it may be Lyme are like me... hoping it is, but after numerous tests and going on antibiotics, still not testing positive for it with the Western Blot test.

Having said that, about 15 years ago, my daughter was the first diagnosed case of Lyme disease in our town... it was still so uncommon that the state nurse called me, the blood was sent to the CDC, it was a big thing. another neighbor's daughter had to go to Hartford for treatment, and it took years to eradicate for her. I own the book that she refers to in her story...

Regarding the hypochondria link: seriously? If it walks like a duck, looks like a duck, quacks like a duck, oh wait, it's not a duck! To "chastise" us for dealing with some of these people who OBVIOUSLY are NOT listening to advice they asked for? Wow, how long have YOU been answering these questions? We give everyone the benefit of the doubt here, but since most of us have a great deal of trouble typing, when the "duck" doesn't want to listen, but argue, what do you expect? You ask for advice? LISTEN to it! When you've been to 5 different docs that say the same thing, have had numerous tests that do not say ALS... yet you're here. We're not doctors, we live with ALS, whether as a caregiver or a patient... don't waste our time!
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Old 07-28-2012, 01:29 PM #8 (permalink)
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Default re: Symptoms may be Lyme disease

On the up side, perhaps some of our ALS wannabes can go to that website and lurk around. does it have a forum? Lyme would b e a perfect diagnosis for many of the people here.

I think it is such a BS line "Lyme mimics ALS"

I met Martz, spent a lot of money with him. He was not "lying in his bed dying" and t hen thought of lyme. he had a possible diagnosis--I dont beleive he had ALS after what I have seen and heard. More BS--and dangerous too for real PALS.

Grrr! this makes me so angry!
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Old 07-28-2012, 02:47 PM #9 (permalink)
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Default re: Symptoms may be Lyme disease

nuts, my post got moderated and hasn't been seen yet... waiting with bated breath (not!)
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