ALS like symtoms /Lyme

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adorn
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 8:55 AM (GMT -6)   
Hello,

My husband has been recently diagnosed with ALS however, his only symptoms are weakness in the tongue which is causing slurred speech and slight muscle twitch in right arm. He has a severe episode of vertigo and than woke up the next day with slurred speech. Dr put him on some antiviral meds which he showed some improvement. During this time my husband was under extreme stress and said he felt like he was getting sick. We also have a child with Autism which adds to the stress. Dr can not understand why the slurred speech happened over night and not gradual. He has severe TMJ which is causing severe pain in his jaw and makes it hard to chew tiring out his jaw. All of read states that with ALS you have no improvement your health just continues to decline and this is not the case for my husband which is why I think it maybe Lyme.

I've heard many stories how ALS can be misdiagnosed and in reality the person has Lyme. I live in the DFW area and am trying to find a LLMD dr in our area if all possible. Can anyone make a recommendation? What tests are recommended? Anything would help.

Thank you!!

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3679
   Posted 6/14/2018 9:23 AM (GMT -6)   
Hi Adorn,

Welcome to our site. I do not have a personal recommendation but you are able to look up a doctor that is a member of ILADS in that area. I absolutely hesitate to say that all ALS is lyme but there have been many misdiagnosis in that area and we have had former members that were diagnosed with ALS - that did turn out to be lyme. If you have that instinct...you should absolutely pursue what your gut is telling you. Boy am I glad I did!

http://ilads.org/ilads_media/physician-referral/

Hopefully other members on here may have more information for your area. Let me know if you need other suggestions!

~beth
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!
July 2014- Off all treatment since Jan 2014, just taking vitamins

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4714
   Posted 6/14/2018 9:24 AM (GMT -6)   
Welcome .yes i too was given that bs dx ...i am better with few years of abx and bvt ....
I would order a dna connexions test ,no doc needed ..just send urine sample after massage. I verified my infection with direct microscopy at 1000x .others will be along...

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2103
   Posted 6/14/2018 3:05 PM (GMT -6)   
Hi and welcome to our forum,

I am sorry your family is going through this.

On Facebook, there is a "Texas Lyme Support Group"

They may be able to give you more recommendations for the best llmd's in your area.

You can also email me or Girlie and we will look at out list for your area.

You can also search at Lymedisease.org for llmds.

If you can travel there is a well known llmd in Washington DC that is accepting patients, just email for more info.

Meanwhile it is very important for your husband to build up his immune system, eat gluten free/paleo , no sugar, preferably no alcohol. No steroids.

Igenix labs is one of the best out there for testing for Lyme and co infections.

You can goggle them and you would need a doctor to sign the blood work request.

Well take care and feel free to as any questions our reach out for more support if needed.

adorn
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 5:50 PM (GMT -6)   
Thank you for the information will add myself to the facebook page and see if I get any recommendations. His dr agreed to doing the test just waiting to find out which one she is doing b/c I have read some are not accurate.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4714
   Posted 6/14/2018 9:25 PM (GMT -6)   
/dnaconnexions.com/# lyme and 11 other coinfection dna test ...no doctor needed ...u are in a fight for your hubbys life! read the dr david martz story he was feature in "under our skin" which u may want to watch ...the docs ur seeing may not be on your side ...i had a positive test and a id doc refused me treatment.!
and call his clinic at creek trail medical center in colorado springs for treatment guidelines with abx (the nurse he trained runs it )..or stick to dr burrascanos guideline .i and 2 other als persons used bee venom therapy to knock back the borrelia bacteria .

also see this site www.shackel.org/mytheory.html ...he used tinadozole to stop his progression ...i believe als to be nerve damage and demylynation from borrelia and bartonella ....i made real gains with,iv rocephin ,bvt, bartonella treatment, abx and herbal ...if i can be of assistance or guidance pm me over on lymenet flash

Are you /him able to travel in sw for treatment ? some llmd would meet for initial then maybe skype for follow ups...

Post Edited (bluelyme) : 6/14/2018 9:59:52 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32549
   Posted 6/14/2018 10:31 PM (GMT -6)   
If you do watch the documentary Under Our Skin - you will see Dr J in it. He’s the Dr I emailed you the contact information.

Here’s the website - you can rent the video for a one time viewing.


underourskin.com
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 6/15/2018 2:15 PM (GMT -6)   
https://books.google.com/books/about/An_Unexpected_Journey.html?id=YnbMnQAACAAJ&hl=en


I met this guys several times at Dr Yu place. The author ( who beat als) is very nice and helpful -the book has his contact info should you have questions
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