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Old 03-22-2010, 02:06 PM #1 (permalink)
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Default Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hi All

I have been following many posts on these forums for about a month now. Days have been rather bleak lately if you know what I mean. You all seem very knowledgeable about ALS and everything that it entails. I love reading your posts and find most of them very informative and some rather hysterical when you guys get on people.

I am a 28 year old female. Before a month ago, I was in super good health, def a fitness buff, and a cheerleading coach at that This year I have been dealing with a lymes disease diagnosis from last February. I tested double positive by CDC standard on both western blot and elisa tiered testing by LabCorp of which I hear I am lucky to have been positive. I was treated with 10 days of doxy 200mg and seemed to resolve alot of my symptoms of pain, tremor, and jerking last year. Since July of this year I have had extreme memory problems, losing my car a couple of times, forgetting familiar peoples names, word finding speech problems, slurred speech, electric shock sensations in my neck, tongue, and arms. I also drooled a couple of times while reading at school. I'm a Physicist nerd I know..

I have horrible acne and scalp acne since being treated with doxy.
I am allergic to all hair care products except Head and Shoulders and dial soap.
I am allergic to milk and nuts now.
I get these electric shocks in my neck without moving it at all..it feels like someone slaps me.
I still get the muscle jerks.
I get these creepy crawley sensations all over my body kinda like ants crawling
I feel these vibrations in my legs and painful jabs in my body
I get chest pains where it feels like andre the giant is hugging me'
My heart also slows down and I have to cough to get it to start back up

My recent problematic symptoms leading to my hysteria started this February with numb toes after working as a bartender one night the numbness stayed for over a week progressing into a jello like feeling leg but I can walk fine and run upstairs..its just funny feeling and painful joints in my knees, elbows, ankle, and lower back that causes numbness as well when overworked. I also noticed muscle twitching in my legs and feet and then all over. I noticed a few twitches in my butt as well lol..

I know you guys are very intelligent so I wanted to present this case to you as it is very odd and I'm am very interested in the overlap of conditions while none of my doctors seem interested in my case. I must admit I am more scientifically anxious than health anxious.

I have had MRIs of brain and lumber, cpk, ana, b-12, emg of problematic leg, arm, and 2 paraspinal insertion at the neck. All normal and my neuro even said my emg soundedf more normal than normal people..whatever that means. My reflexes are somewhat hyper but I'm an a super anxious person. No clonus, no babinski, no atrophy, or clinical weakness as I can tell..there is alot of discussion on weakness..hmm.

My Lymes test last week came back again double positive for a flaming infection. My wonder is...in your opinion is it possible for lymes to turn into or trigger als, do you think I could possibly have als, and also if it is lymes/als could black mold exposure trigger these conditions. I only ask this is because I am a disgusting car keeper. Before I got really sick with these symptoms, I cleaned out my car of 5 years and found a terrible mold infestation in my car which was probably there for a long time.

Your input is so valuable at this point as for me to direct my physician accordingly to my treatment. I am currently on IV rocephin for 28 days at 1 gram per day...I finished my 3rd dose last night and my twitching and buzzing became worse. I am a big skeptic with the whole lymes ordeal even though my physicians believe I am under concerned. Having been bitten at basic training in 05 and got really sick and then again in 08 with the rash and sick again. But hey I'm a skeptic its the scientist in me..even though my doctor is extremely worried about the lymes and I worried about mold and als lol..

Please advise me to your best knowledge because I highly regard your opinions

Thank you in advance for you time

Kelly
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Old 03-22-2010, 03:40 PM #2 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

  1. You had a normal EMG which means no lower motor neuron involvement which means - no ALS
  2. A month ago you were healthy - not ALS
  3. You've tested positive for Lyme - not ALS

You say you're a scientist so look at the facts. You're positive for lyme disease of which there are an estimated 100,000 cases annually in the US as opposed to 5,000 for ALS. You have none of the requirements for an ALS diagnosis but instead have things that disqualify an ALS diagnosis. Lastly, you tested positive from Lyme (did I say that enough)

If it looks like a duck, swims like a duck and quacks like a duck ... it's a grizzly?!?!
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Old 03-22-2010, 06:26 PM #3 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

I couldn't have put it any better myself . . . although I think I would have gone with a polar bear instead.

Not even close to ALS symptoms but I'd have to say pretty darn close to Lyme's disease . . . probably because you've been diagnosed with Lyme's disease.

Oh . . . AND NO . . . there is absolutely no evidence at all that Lyme's disease or mold causes ALS, unless of course you look on the internet. I'm sure some moron (or morons), somewhere in the world has (have) made the claim and posted it online.

Good luck with your treatment, of your treatable condition.
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Old 03-22-2010, 09:08 PM #4 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hey thanks you guys...I have tried not to jump on the Do I Have ALS bandwagon too much..because you always acquire the symptoms when you play with Dr. Google. I knew I could rely on you guys for an honest answer. Thanks for not pummeling me too bad

I have read your other posts Wright about EMG accurracy and I copied it and saved it to my desktop so I could read it when I get nervous. It is true that if my fasciculations and jello leg were present at the EMG my neuro would have caught it correct? I got pin cushioned on the jello leg.
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Old 03-24-2010, 12:13 AM #5 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Lyme causes all kinds of funky stuff to happen - still not sure why you would even show up after a flaming case of Lyme. If it were me I would be beating down the doors of the premiere Lyme docs in the states to get on top of that and zap it.
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Old 03-26-2010, 01:56 PM #6 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hey you guys,

All your points are well taken...trust me..its hard to be at peace when I feel like a one woman circus lol...today is my 7th dose of Rocephin and I have had a fever and bottoming blood pressure everyday. All my symptoms plus some from the past have reared their ugly head again like the full body jerks. I had a follow up appointment with my GP today to review my progress and do blood work for thyroid crap and he checked me over and found that I have tongue fasciculations...hmm. He made me stick out my tongue and hold it there for like 30 seconds while he stared at it. He said he found wiggling fascics in my tongue.

My question is everyother time that a neuro looks for fascics on my tongue...they make me rest it in my mouth...my tongue doesnt sit still after 30 secs of sticking it out...is this a valid observation of fascics because I'm skeptical...plus I have no weakness I can tent my cheeks and feel all of my teeth etc. No problem swallowing but do have the speech problems.

Wright is this doc a quack? because he sent me back to neuro for another emg on bulbar on friday...my neuro is going to probably call him and tell him to quit sending me if the EMG comes back normal again.

and will he stick those needles through my tongue or will he do the paraspinal back of the neck muscle again for bulbar?

Thanks guys for all your time...I know it gets frustrating..since Rocephin I feel like I'm going downhill..which I read is possibly normal.
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Old 03-26-2010, 02:09 PM #7 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

I think your exposure to mold could complicate your symptoms of Lyme's. Mold is a big, big nasty! To those of us who have read your well written post, it is obvious you have Lyme's. It is an entirely different booger than ALS; one that is treatable!

I second the idea to get on with one of the best in that field.

You can rest assured of one thing; it won't morph into ALS.

Zaphoon
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Old 03-27-2010, 01:41 AM #8 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

hi,
my healthy husband's tongue twitches when he sticks it out. I have the light popping twitches in my tongue and I can feel that when it happens. And it sits still inside of my mouth. That's GP who checked out your tongue, not your neuro. So don't worry.
 
Old 03-27-2010, 06:01 PM #9 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

If you have Lyme, you have Lyme.... End of story... It can cause more symptoms than MS.... So anything weird happening to you is probably the Lyme. No real point banging your head against the wall thinking it might be something else. Treat the Lyme! And everything else should fall into place....

P.S. Well, this is an ALS forum, so we probably should not be posting much about this topic here. But one thing should be posted is that yes, you can twitch, have weakness, bulbar symptoms etc etc, and still not have ALS! Lyme is just one many things that can cause this.... And yes, the EMG is usually normal with Lyme! So if your EMG is clean, you should be fairly sure you don't have ALS!
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Old 04-02-2010, 12:46 PM #10 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Ok so all my tests came back normal...kinda sad today bc I was hoping for some answers but neuro said he has none at this time. I'm in the wait and see game officially..this sucks...scheduled for another emg in 3 months. What now?
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Old 04-02-2010, 01:57 PM #11 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Kelly...

No offense, but you should be exceedingly happy, not sad, that the neuro tests came back normal! While I can empathize your need for answers... trust me that you don't want to hear that it's ALS (or many other neuro problems that your tests have eliminated ).

I am a scientist/engineer as well, and I can't possibly see how you can logically continue to pursue the MND/ALS front so emphatically at this point.

What now?... Continue that Lyme's treatment! Go have some fun. Trust your neurologist. Be happy for clean EMGs. Wait patiently your 3 months for new EMG.

While waiting may seem to suck, it beats many of the alternatives.

Brian
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Old 04-02-2010, 03:08 PM #12 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Brian,

No offense taken I realize I should be happy..like I told the nurse/bff I guess I'm just wanting answers because i think lyme is all hog wash but I can't deny the fact that I am getting better well not progressing as fast as I was over the last 3 weeks. I am no longer worried about ALS/MND..if I have it then I have it and there is nothing I can do except get on with my life and thats what I am doing. I love checking in with you guys just because this site has given me so much inspiration from all the good people here.

I am seeing an LLMD..he is supposedly awesome because he checks for mycoplasma and viruses..all that jazz

Anyway thank you guys and I'll keep ya posted..I thought it was funny..my neuro said he would do an exploratory emg every week if I wanted. I think every three months is good..I'm not a fan of being a pin cushion.
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Old 04-08-2010, 11:22 PM #13 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

So just updating and venting a little so sorry in advance..

My LLMD pulled my IV and said the Rocephin was too low of a dose to do any good but I have been off of it 3 days and have gone back down the hill faster than I did at onset of symptoms. My toes are numb again, my leg jello, muscle aching and cramping, my speech sucks so bad I wont even talk to my friends on the phone. I've lost 10 lbs in 7 days and I'm now taking weight gainer with 5 meals a day and I managed to steal back a couple of pounds. At onset a month ago, I was 122lbs and yesterday I weighed 109. I'm so mad frustrated whatever. I keep biting my tongue when I talk and chew. And now I have this wierd blurry vision episodes.

Today I went to a Chiropractor to get accupunture. He made me do all these wierd neurological exams of which I past most but failed miserably with the drift thing..I did a whole 90 degree turn from my original position which he said told him that I am favoring my left leg, he told me my leg is weak, and sad that my feet and hands are unusually thin in comparison with my other parts, and my reflexes were really brisk. hhhmm..my mom freaked out on him a little because he did not know I had been worked up for MND and I think he felt bad but oh well..he did Xrays of my back and neck and found alot of problems with sublaxation whatever that is and popped and cracked me..

I included before that I was having Carpel Tunnel like symptoms in my arms which started at the same time as fasiculations widespread. When he cracked my neck it sent crazy pain shock feeling down my arm and into my hands. They went totally numb and then have felt better all day...so wierd.

Anyway I'm on my oral antibiotics and I guess I just need a pic me up because this is my one month since all this started and I got my first clean EMG and I feel like I'm in the same place I started. My neuro is now saying with my relapse off Rocephin I might need a second opinion. What do yall think? I'm just so tired. I did however go on a fantastic date this weekend with a great guy..had a blast shooting my AR15.

Also for any Pals reading this, if you could go back before that one dirty emg while you still had a clean one what would you do preventatively to try to halt progression to LMN symptoms? My friend has RSD and we were both just contemplating this tonight. I have all UMN symptoms besides fasciculations. So just asking opinions.

Some cool news from the LLMD, he has a girl my age that was diagnosed with ALS from UAB she was his daughters roommate in college. She came to him in a wheelchair and couldnt speak and the LapCorp nurses said her mom had to hold her head up while they did labs on her. LabCorp nurses said she is walking and went back to work as a nurse at UAB in 2 months on his treatment. My Doc cant talk about her because of Hippa but said he would see if she would be willing to email chat with me. The LabCorp nurses told me all about her so it made me feel like I was in good hands..I'm the most cynical person when it comes to miracles but they were very enthusiastic about the girl's progress. I just wish this could be the typical case for all PALS.

My doc said give him a month to see significant improvements. He offered no promises but did save my family tons of money on too low dose of rocephin but he did add that my GP prolly saved me from a wheelchair because of my acute onset and very fast progression. He said ALS does not put you down in 2 weeks of onset.

Any thoughts from the bravest people I know? Bc I am feeling kinda weak but looking forward to another date this weekend with that awesome guy. I'm going to Jane Wayne day at Ft. Benning and jello leg or not I'm repelling..havent done it since I was in the Army 5 years ago.
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Old 04-10-2010, 11:56 AM #14 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hi Kelly,

I'm just some dude and not a medical expert. Below are some of your comments and my thoughts.

I'd recommend the Mayo Clinic if you can afford the trip. I've been to the Jacksonville, FL campus twice and fell in love with their method of treatment. Here is a shocker - the doctor's actually talk to each other about your case. You can also knock a bunch of appointments out in a quick time, instead of the usual waiting weeks or months in between.

"neuro said he would do an exploratory emg every week if I wanted"
What are you trying to find with an EMG? ALS? Plus, your insurance would probably croak if you had a weekly EMG!

"if you could go back before that one dirty emg while you still had a clean one what would you do preventatively to try to halt progression to LMN symptoms"
See above, what are you trying to find with an EMG?

"did Xrays of my back and neck and found alot of problems with subluxation"
subluxation = joint misalignments; I bet everyone on this board has this

"another date this weekend with that awesome guy"
I hope you have a great time! If it doesn't work out, I'm a 30/m. But I live in Houston.

- Josh

Last edited by David : 03-30-2010 at 04:29 PM
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Old 04-10-2010, 07:02 PM #15 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hey Josh,

I guess I'm just scared of all the things that are happening to me on this lyme treatment. I wasn't meaning that the subluxation was apart of Lou either. And about lyme, I'm just a skeptic but i'm forcing myself to stay positive. I am taking leave from this forum for awhile so I can focus on getting my lyme's treatment bc it in itself is stressful enough. I've been in the bed for 2 days and I am wiped out just walking to the fridge to get more water or food. About the EMGs I get them for free bc my neuro is my best friends husband. He is awesome but believe me he makes sure I feel every needle stick to the max so that it will deter me from asking for another one. I'm sorry I sound so ridiculous esp in the light of what everyone on here has gone through. So I am going to say bye for awhile. I will give you guys an update when I get better. As for the date, lol, you can always PM me and I'll give ya my email. I like to talk to people esp on days like today when I'm in the bed all day. I've only been on my protocol for 4 days since stopping Rocephin. He said I'm having a herx reaction but I call it H E double hockey sticks..I feel like my head is going to implode like a quasar and a black hole
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