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Diagnosed with ALS -but really Lyme disease?

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Posted 8/13/2015 5:18 PM (GMT 0)
Has anyone here been diagnosed with ALS when it was really lymes? Has anyone had both? Tim was diagnosed with ALS in February, but/and is positive for lymes. (we are seeking lld close to brooklyn.)

Post Edited By Moderator (Girlie) : 8/13/2015 1:00:08 PM (GMT-6)

Posted 8/13/2015 5:32 PM (GMT 0)
Yes, people have been diagnosed with ALS when it was actually Lyme disease.

There is a Dr. who was diagnosed with it and then treated with antibiotics for Lyme and recovered.
He is in the Under Our Skin documentary.

I will look for the video on the "net" with him talking about it and post the link.
Posted 8/13/2015 5:34 PM (GMT 0)
His name is Dr. Martz.

Here is the link:

/www.youtube.com/watch?v=UY9FdULDV6M
Posted 8/13/2015 5:37 PM (GMT 0)
THANK YOU !!!
Posted 8/13/2015 6:42 PM (GMT 0)
There's a member on here whose husband has both, so maybe she'll help you too.
Posted 8/13/2015 7:01 PM (GMT 0)
mommychops - I edited the Subject - it might attract more people that had an initial ALS diagnosis.
Posted 8/13/2015 8:16 PM (GMT 0)
I just did a search on here for Cat53's posts concerning ALS - that's the member that Garden Peace was thinking of, I believe.

You can go through the links to see what information you can find:
goo.gl/f8wzUt
Posted 8/13/2015 8:29 PM (GMT 0)
I just sent you an email - please let me know if you don't receive it!
Posted 8/13/2015 10:33 PM (GMT 0)
Traveler: i don't see an email from you.
Posted 8/13/2015 11:36 PM (GMT 0)
Thank you for letting me know. I'll resend it now. I'm not sending it to the email you have listed here, by the way, but it's in your name, so I hope you have another email address!!! If not, send me an email and I'll see what I can do!
Posted 8/14/2015 12:10 AM (GMT 0)
THANK YOU, TRAVELER !
Posted 8/14/2015 12:14 AM (GMT 0)
I hope you got it - and you are very welcome!! I'm glad I could be of help!!
Posted 8/14/2015 2:41 AM (GMT 0)
I am here. Mommychops, my husband was diagnosed with ALS in 2012 and tested positive for Lyme in 2013. I am so glad you are here and that Tim tested for Lyme. Toby has many of the symptoms of ALS, but Lyme sufferers can also experience these symptoms. I am open to any emails if you would like to write and I am open to phone conversations too. Let me know if you are interested in either or both. I am trying different modalities and so far Toby is still walking and his swallowing has improved a bit. If I can manage to get my husband through this, I want to try to share with others diagnosed with ALS/Lyme to see if I can be of help. I am also hoping to learn what others have done to heal.
Posted 8/14/2015 4:38 AM (GMT 0)
i will share ALL, Cat53.
Posted 8/19/2015 9:12 PM (GMT 0)
finally heard back from ilads with 3 recommendations. i had sent request aug 12.
tim saw an ID this afternoon who had cured someone who had lymes - misdiagnosed as ALS, which is why tim went to see him. doctor said igenex test was negative. (it was positive.) said he cd not treat symptoms he cd not see. we will pursue LLDs.
Posted 8/19/2015 9:33 PM (GMT 0)
I'm so sorry for the disappointment, although it's not surprising that an ID doc believes that.

Please be sure to let us know if we can be of any help!
Posted 8/19/2015 9:33 PM (GMT 0)
Mommychops- good move on continuing to pursue an LLD. UGH- some (ie: many) of these ID docs!! OHMY!!!
Keep on being strong. As a person with "MS" with positive Igenex testing for active Lyme-- I cannot tell you how much my rock of a partner means to me. I bet you are more valued than you can imagine right now.
Just needed you to hear that. :)
Thinking of you guys!!!!!! xx
Posted 8/19/2015 10:08 PM (GMT 0)
we consider this a bump in the road. tim will make appts with LLDs and then go to the first one he can get. he says he won't mention the ALS. that once he mentioned that, that's all the ID heard. i very much appreciate this very supportive group.
Posted 8/19/2015 10:15 PM (GMT 0)
I don't think you'll have the same reaction to the ALS diagnosis as the ID Dr. LLMD's know that it is one of the misdiagnoses.

So glad you are pursuing the lyme treatment...
Posted 8/21/2015 1:16 AM (GMT 0)
I am glad you are heading in the right direction too mommychops. I saw that you wrote me last night, but I was too tired to respond. I will respond as soon as I get back to the email. Try to stay positive because Lyme can be treated. Toby has remained stable with alternative treatments so I believe it is possible for Tim too.
Posted 8/21/2015 11:08 AM (GMT 0)
Hi there

This happened to me as well. I can tell you I have been treating about five months and I am not getting any worse and feel my treatment is actually healing me. I had another emg and ncv this week and it actually shows I am healing and that test looks very different then it did nine months ago. They are now saying they can't say it's als for sure and they are very puzzled.
I did test lyme positive via dna and had three positive bands and two interminate all igm

Do not accept this dx. Go get ingenex done and seek out a llmd and treat agressivly especially if he has been bit by a tick no matter how long ago. Keep being positive and come here often for support, this is what has kept me going when I was in doubt. If you want to talk send me a msg. Your husband has lyme, that is his dx, not als ....treat treat treat and don't give up 💚💚💚
Posted 8/21/2015 7:47 PM (GMT 0)
That's great SailorKim. It is so encouraging to hear and I agree with you 100 %. Toby is stable and I believe he is also healing, but we haven't been to the ALS clinic since April. You can tell he is doing better. His swallowing as improve a bit and his voice is getting stronger too.
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