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bellaxo

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Learn about ALS
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new york
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new york
I'm currently extremely stressed out about what my diagnosis will turn out to be but I know something's going on.... A little about me:

24/f
For the past 2,3 years (but much worse recently) I've been suffering from extreme fatigue (physically & mentally), brain fog, hair loss, dull headaches and severe anxiety. Just a week ago tested positive for Lymes with 1 reactive iGM band (23). Everything I've read indicates this is probably a chronic case of Lymes which wasn't caught early enough (which would explain the on going symptoms) and I have an appointment with an established Lyme's doctor in 2 weeks to hopefully begin long term Antibiotics right away.

My problem is I've noticed some obvious similarities to my own symptoms and ALS and I was hoping for some insight. I FREAKED out when I read mercury can be a potential trigger as I currently have 4 silver fillings in my mouth. I know Lymes can mimic ALS but I don't think it can mimic the hand ATROPHY seen in both of my frail painfully thin hands. I never even thought to consider the fact that my 24 year old hands look like a 50 year olds! when I look at my hands palm facing me the only bulge apparent is my thumb base muscle (?) the rest of the palm is almost completely flat, actually the palm even slopes inwards in the centers...After looking at pics of myself from even 2 years ago, it's very obvious they have thinned out (no weight change) I also have quite a bit of webbing (excess skin) in between my thumb & forefingers... I'm petrified..... Another odd symptom is on & off dull/numb feeling on the inner forearm of my right arm (like where they would put an IV or take blood) that area has been giving me a weird sensations, I wouldn't say pain or weakness but almost like someone tied a rubber band around the arm and is cutting off circulation and it feels kind of tingly like I can feel the blood rushing through my arms. This has also occurred in my left arm in that spot, sometimes both, gets worse when stressed but I know I'm not imagining it. Does this sound like ALS? I wouldn't have suspected it if it weren't for the hand atrophy/mercury fillings.

Also, what type of Doctor typically diagnoses this disease?

Any help/insight would be MUCH appreciated
Pics coming in next post..
 
It took seven years of headaches, stiff neck, and finally atrophy in my lip to understand that it was something serious for me. I was bitten by a tick in 2003 and did not know anything about ticks then so I didn t go to the doctor as I had no real symptoms more than fatigue, which wasn t even that obvious. I recommend you search up a neurologist, do the tests, then also visit a Lyme doctor and start antibiotics. Use every resource you have, this is your health we are talking about. Don't be stupid like me and think it is a depression or something like that.

Hugs from Sweden.
 
Whatever your problem is, one thing it is not, ALS. Now go to your doctor and let them figure it out.
 
You have a positive Lyme test( don't have that in my country ) so you needn't go down the ALS path. It will mess with your head. Your hand photo looks Fine. Palm should slope in the middle! Leave it to your experienced doctors. I hope your symptoms improve with the treatment. Best wishes
 
You have Lyme Disease you are a lucky lady! They can treat your symptoms with medicine, you are a lucky lady! You have your whole life ahead of you, you are a lucky lady! Go enjoy life and let your doctor help you.
 
Gusflower I'm confused, do you have Lymes or ALS or both?

Thank you for the responses guys. I know I have Lymes and would be extremely thankful if that is the extent of it... It's just there is a HUGE connection between both diseases, some doctors believing that untreated Lymes can eventually progress to ALS.. I'm just trying to cover all my bases and be prepared for the worse, especially because of the high levels of mercury I'm sure are circulating through my body due to those damn fillings.
 
Could you please tell me . . . quote me a peer-reviewed study . . . give me anything legitimate that states there is a HUGE connection between Lyme's disease and ALS, because I am completely unaware of it and I really thought I was on top of things.

While you're at it, could you do the same for mercury's connection to ALS?

Could you then tell me why hand atrophy cannot be caused by Lyme's?

Could you then explain to me how tingling and a banding feeling around your forearm are typical symptoms of ALS?

Do yourself a HUGE favor and get the hell off of the internet because it's doing nothing but bad things to your mental and emotional state of mind. You have your diagnosis. Let your docs plan your care to deal with the bacteria that has invaded your body. I wish you luck and peace.
 
Alyoop, I have seen you post that response many times (No Lymes test in your country). Are you saying the test is not available or you have no ticks in your country?
 
I would say that untreated lyme can lead to ALS. Like it has for me. I probably had lyme for 4½ years until it went over to Bulbar ALS (and last year I got atrophy of the upper lip). A tick bit me in the summer of 2003. After it bit me I have had continous headaches, neck pain, and a clouded memory. But there has to be certain things already present for a tick bite to develop to ALS. In my case I probably already had dormant Chlamydia Pneumonie which made the immune system not kill the infection from ehrlichia and borrelia. I'm turning 30 on the 19th of April.
 
Gusflower, When did you get your diagnosis of ALS and from what documented source are you saying untreated lyme can lead to ALS?
My Aunt has done bio-medical research for many years through the Smithsonian Institutes of Washington, DC and yet she has never heard of this?
 
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Gusflower

You would say that Lyme's can lead to ALS? I had no idea you had an M.D. and/or Ph.D and did research? May I ask what study you headed and published that prove that? I would love to read it. If I am mistaken and you're not an M.D. and/or a scientist, may I ask what study you read that proves Lyme's can lead to ALS?

I was also not aware you got an ALS diagnosis. When did that happen?
 
You would say that Lyme's can lead to ALS? I had no idea you had an M.D. and/or Ph.D and did research? May I ask what study you headed and published that prove that? I would love to read it. If I am mistaken and you're not an M.D. and/or a scientist, may I ask what study you read that proves Lyme's can lead to ALS?

He read it on the Internet -- it has to be true! Who cares about science and truth? :roll:

I was also not aware you got an ALS diagnosis. When did that happen?

Here's the latest update he posted here, March 10.

Here's an update on my condition. I did a swallow test, there was no neurological problems. But the swallowing issues persist. The chlamydia pneumonaie was negative for antibodies through PCR. I'm taking acid reflux pills to see if it eventually clears up.

I finally got a time for the MRI, 1st of April. I will see my doc about the atrophy in my lip. It's very weird, my upper lip has shrunk in and the sensitive lip skin has started to dissapear more and more, it's just a lump of tissue underneath the lip now.

Apparently, gusflower has the extremely rare non-neurological variant of bulbar ALS. Probably was diagnosed by one of Blizna's neurologists-by-email.

(end sarcasm)
 
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There are millions of reputable clinical trials and studies noting the connection, just do a quick google search. If I had to site all these studies I could easily provide you with 10-20 links on different cases where a patient was diagnosed with ALS, then found to also have the antibodies to B.b... and treated with heavy long term antibiotics with some success. Google Dr. Martz, A man given 2 months to live with every classic symptom of ALS... Antibiotics saved his life and he is still doing well. I'm not saying everyone with Lyme progresses to ALS and is the only underlying cause, I'm stating it is simply a FACTOR, and there is an undoubted connection; and this has been proved through autopsy's of ALS patients, most findings revealed Lymes to some degree. I'm not trying to argue with anyone or start a debate, but some people really need to be a little more open minded.
 
Hi,

To my knowledge there are two publications in peer reviewed scientific journals concering cases of Lyme disease actually mimicking ALS, to such an extent that neurologists actually couldn't tell the two dieseases apart. There are also two or possibly three publications in peer reviewed scientific journals concering cases of celiac disease mimicking ALS to a similar extent.

However, the good news is that these two mimicking syndromes are really easy to separate from the real deal, since in the case of Lyme-mimicking-ALS, patients make a remakable recovery just within a couple of weeks of relevant antibiotic treatment and exactly the same thing goes for Lyme-mimicking-celiac disease once patients recieve a diagnosis and a proper diet.

Cheers,
DrG
 
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