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Old 04-10-2010, 06:09 PM #16 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

I just realized you are a new member and you dont have enough posts to PM. So I guess you'll have to pay your dues here and then hit me up. OMG hope this doesnt turn into "The Lou Love Connection" lol.
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Old 04-10-2010, 06:15 PM #17 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Kelly,

I wanted to apologize. I read through the "ALS/Lyme Help" thread and did not realize folks with Lyme were getting diagnosed with ALS, etc. So it makes sense to be a little concerned with all that. I have lost A LOT of faith in doctors with my own ordeals as I'm sure you can relate.

Best of luck and hope you feel better soon! How many posts to my PM limit? hehe.
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Old 05-07-2010, 11:30 AM #18 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Update after 2 months on Lyme treatment and my first follow-up visit with pathologist and neurologist:

-My twitches have almost completely subsided.
-My cold/jello leg is no more
-Reflexes have almost returned to normal
-No more herx reactions
-Hypotension has significantly improved.
-Blood pressure is stable and pulse is back to normal.
-wasting of foot pad, stiffness, and parathesia in right leg
-Vitamin D low, low lymphocytes, and low HDL cholesterol

I have been playing volleyball everyday and exercising as much as possible. I have tons more energy and feel alot better.

My follow-up with pathologist was positive except for the fact he noted that my foot pad has markedly wasted away to where now my bone is protruding which is causing pain. He said it is not lyme's related and that I can no longer go barefooted until we find out whats wrong. He advised picking up some creatine to try to build muscle back. I love going barefoot bc shoes hurt that foot now.

My neuro did a full body emg all normal except for Ulnar neuropathy at the wrist on my right arm which explains not being able to pick up my cookie the other day and ive been dropping everything.

I have a week with a neuromuscular specialist at MSU next week.

Whatever is going on Lyme has def caused it...I know CIDP and MMN has been known to associated with lyme..anybody with CIDP or MMN care to comment...I have a normal needle EMG so I think that cuts out those for me but I heard it can move very slow and only show NCV damage first.

Any help would be awesome peeps..

And to any hypochondriacs reading this....I DO NOT have ALS nor do i think I do..just a side note lol...

Hope everyone is well.
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Old 05-07-2010, 01:26 PM #19 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Best wishes to you for your continuing recovery. -- JK
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Old 05-07-2010, 01:32 PM #20 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Kelly, keep on getting stronger and better. I am so glad that you are feeling better and that you are playing volleyball and exercising, it is important for not only the body but for the mind too.

I have no advice for you, just encouragement.
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Old 05-07-2010, 03:03 PM #21 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

I'm very glad to hear that you Lyme treatment is working so well for you! That is almost miraculous considering how poorly you were doing and how you were progressing before. What a relief that they found a good treatment. I hope your remaining problems clear up soon. It's great to get some good news around here, thanks for keeping us in the loop.
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Old 05-07-2010, 08:34 PM #22 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

So glad to hear you are improving! You are blessed to have done so well on your Lyme Treatment!
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Old 05-08-2010, 08:14 AM #23 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Thank you for all your kind words. It continues to be slow improvement but I am improving from not getting out of bed to playing volleyball and riding motorcycles again. I am praying to God that I will be fully well in a month so I can do my annual stunt show with my stunt team. This foot has to get some tissue back. I am hoping to get them to do a charity stunt show for more awareness and more money for this disease.

I sincerely love all you PALS you have all been such an inspiration and a motivator for me. Its crazy to think just 3 months ago I had only briefly learned about ALS in school but never thought it would change my life for the good and the bad.

My life has changed so considerably. I live my life in the present everyday now. I play with my dog like I'll never see him again, I tell my loved ones I love them and reiterate daily what they mean to me, I say yes to every opportunity, and put my heart into every step I take and every breath I breathe. I always dreamed of living this way, and you PALS and CALS have helped me and if I died tomorrow I would truly have found what living really is and that before this I hadnt been at all.

Thank you guys so much and though I still have to be cleared from MSU I believe everything will be fine and I promise to every one of you...I will become the best doctor I can and remember everything I have learned here and I will do my best to whip this monster's butt.

You guys have given me a whole new passion and excitement to start Med school next year when before I was questioning whether or not it was my calling by far I got my answer. I sit here in tears because I love each and every one of you so much. I think I found that lost passion.

Love,

Kelly
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Old 05-08-2010, 08:31 AM #24 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Kelly, a volleyball playing, motorcycle riding, stunt woman doctor who understands ALS, loves dogs and is also gorgeous , what more could any patient ask for? I hope that you do go to medical school, you'll make a great MD.
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Old 05-15-2010, 03:50 AM #25 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Guess now I'm a dirty fibber..lol

My Emg was abnormal today at Mary Free Bed. Dr. G found some fibs in my leg and arm. Ncv was normal but a significant difference between left and right side for motor and sensory nerves. My new tap showed infectious inflammation and she referred me to their top infectious disease doctor tomorrow. She said its not motor neuron disease but said its axonal damage. Whatever that means. She said I have mononeuromultiplex..?

Needing encouragement from the strongest people I know..my clinicals were good except brisk reflexes no pathological reflexes. My doc is one of the leading als specialists in the country and has worked w mnd for over 20 years..when she says no als I have to believe her..I guess I'm just down but at least she gave me gabapentin. She wrote cidp on my chart pending the antibody testing.

Love kelly
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Old 05-15-2010, 12:57 PM #26 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Well, from what I have read, Lyme usually doesn't affect your EMG test results a great deal, it can affect it to some degree. Since your actual test results are officially still normal, just a minor difference from one side to the other, I probably would not worry to much. And fibs are just twitches, and you have had those all along which is a common symptom of Lyme. And Lyme is an infection that gets into your CNS -> That could explain the positive test result.

From what I have seen from doctors who arn't familiar with Lyme and what symptoms it could cause. (Which is most), you could easily get spun around from Dr. to Dr. with possible diagnosis of this then that then maybe this.... I have been down that road.....


When I went to my GP a few weeks ago with my latest new symptom, he said it could be a brain tumor.... Except I already had a MRI that was normal….I look it up on Dr. Google, it could be a brain tumor, a seizure, or some sort of psychiatric disorder.... I look it up on the Lyme forum, and low and behold, it's very common with Lyme... Go see my Lime ID doctor, and he says excellent! The antibiotics are working! This is just one example.... I have several others....

P.S. I was put on Lyrica and then on Gabapentin on separate occasions from my GP. They didn't do anything for me. My ID doctor told me to get off them as they don't really help and those meds can cause you additional symptoms.... And you don't want that.... The ID Doctor will treat you for Lyme based on your symptoms.... You don't want the meds affecting the symptoms…

What does your Lyme Dr. say? And is he a well experianced Lyme Dr.? I would say one needs to have treated at least dozens if not hundreds of people with Lyme before one truley gets the grasp of this disease. And be careful of the Top ID doctor.... Ask him how many people he has treated for Lyme, because..... You do have Lyme!
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Old 05-15-2010, 03:11 PM #27 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Kelly

Axonal damage simply means a peripheral neuropathy (a nerve is made-up of a bundle of axons . . . think of a nerve as a rope and the axons are the individual fibers that make-up the rope). Lyme certainly damages peripheral nerves, which is the main mechanism behind the neuro symptoms. I'm not at all surprised with your EMG.

Mononeuritis multiplex is simply damage of more than one nerve from separate areas of the body (e.g. damage to nerves from a few parts of your leg or damage to nerves from your leg and arm, etc.). Again, it's a peripheral neuropathy and is in no way related to MND. CIDP and MMN are in that category and are treatable.

Hang in there and know that you are in good hands and will be given treatment for your condition. Take care.
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Old 05-15-2010, 04:31 PM #28 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Thanks Buddy and Wright,

It was quite odd the fibs being so patchy like she said it is seen in CIDP however I tested negative for the antibodies That wouldve been great to be on iv antibiotics and ivig..Anyway the ID put me back on IV Rocephin 2 grams a day this time. He said I am the first person with Lyme that he thought seriously had it. lol..

I wanted to know Wright though..what can I do to help the nerve to regenerate or get better. She said it is in the process of regenerating and healing right now but is there a way I can help it along or what not to do.

She was not concerned about the fibs at all..I thought I was a goner...but she was so unconcerned that I am starting to feel better about being dirty At least now people know hello I wasnt fibbing (pardon the pun) about my symptoms.

Also Wright why are my fasciculations almost non existent but the fibs are just now showing up...she says she expects to see PSWs soon..wtf.. help a sister out with this mess.
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Old 05-16-2010, 07:12 AM #29 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Hello again Kelly

Consider yourself lucky that you don't have to do IVIg (it is incredibly expensive . . . tens of thousands of dollars . . . Rocephin is a bit cheaper than that). You don't have CIDP. You have Lyme's, which is what is causing your neuro problems. Again, it sounds like you're in good hands and that you're getting the treatment that you need to recover.

Speaking of recovering: there really isn't much you can do to speed the process of healing your nerves . . . but being too active will certainly slow down the process. I had to stay out of the gym for nearly a year when I was healing (and I was a gym rat). You can be active but it should not be anything close to strenuous. Certainly now that your are actively denervating, any activity should be at a minimum.

You probably do have fasics but I bet they're very small and you're really not noticing them . . . and sometimes they're absent or minimal with peripheral neuropathies. Fasics are still a bit of a mystery and no one definitively knows the mechanism by which they form.

The key right now is patience and being optimistic about the day you will make a full recovery. Take care.
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Old 05-17-2010, 02:49 PM #30 (permalink)
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Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

Will I renervate now or what? How can she tell that I don't have ALS from my emg when I see other young folks get the diagnosis with fibs in more than one limb? I trust her just curious...she was very adamant when she handed me my report.."This is not ALS"..she is supposed to give me a firm diagnosis next week being that my antibodies testing is still out. I thought it was all in but in her email she said she is missing 2 more tests and the antibodies for CIDP are still out.
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