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» LymeNet Flash » Questions and Discussion » Medical Questions » Misdiagnosed ALS?

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Author Topic: Misdiagnosed ALS?
Oklast
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Has anyone currently on this messageboard ever heard of someone being diagnosed with ALS by neurologists, to then seek out an LLMD, have the Igenex test done, and then be labeled with Lyme?

I was diagnosed with ALS in Aug 2013 & Lyme in March 2014 by an LLMD. Igenex test positive IGG bands 23 IND, 31 IND, 39 IND, 41+++, 58++
IGM Bands 18+, 23 IND, 31 IND, 39 IND, 41+, 56+, 83 IND

My Issues: Muscle tremors, fatigue, loss of some/most of my strength in my left shoulders/triceps, & hand. It is starting to progress to my left shoulder/triceps.

I'm still working & trying to figure this thing out and looking for answers,

I have had a picc line, done herbals, lots of antibiotics, HBOT, Colloidal Silver, Chelation, Vit C IV's, etc.

My LLMD left the practice and I'm back at square one.

Thoughts...

Antibiotics or no?

Herbals Only or no?

HBOT Hard or soft?

ALS or Lyme?

Curious and looking for input.

Thanks.

Oklast

Posts: 8 | From SWFLA | Registered: Aug 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
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For sure!! There's a retired LLMD who had this happen to him.

I'll move this to Medical Questions for you.

[ 08-12-2016, 06:17 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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I would consider that as a positive test if it were my own test.

IND's are weak POSITIVES. You have bands all over the place.

More info here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

I would concentrate on finding a top-notch LLMD right now. You will likely need to travel.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
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Oklast , this is happening to many people with lyme including myself.

the llmd 22 is refering to is dave martz in colorado .he is no longer practicing. His np is ...

I believe there is a few things at play. A nurse here had that dx and she beat it with bvt and h202. she did do rife and 100 dives hbot

..researching here i believe dr k assumption it is a bartonella mycoplasma affecting the lower nuerons ..

i also have a protozoan the labeled as toxo .i will pm you info later .

A few people have had resolution .you are not alone ...have you seen under the 8ball?

(breaking up the post for easier reading for many here)

[ 08-14-2016, 08:24 PM: Message edited by: Robin123 ]

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Blue

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Oklast
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Keep the info coming. I appreciate it!

I have not seen under the 8ball.

I just got home from my 15th HBOT session in a hard tube for a 2 hr dive at 2.4 ATA.! It's expensive, 3x the cost of a soft HBOT.

I'm actually sitting in my sauna as I type this reply.

Looking forward to more info. Thanks

Oklast

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Tincup
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Hey to you in Jimmy Buffett land!

Here is a bunch of info. Hope you enjoy reading while in your sauna!

https://sites.google.com/site/marylandlyme/lyme/als--lou-gehrigs

Hope it helps.

[group hug]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bluelyme
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http://www.shackel.org/mytheory.html

http://jnnp.bmj.com/content/63/2/257.full.

http://www.lymeneteurope.org/forum/viewtopic.php?t=5777

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Blue

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bluelyme
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http://www.healingwell.com/community/default.aspx?f=30&m=3654988

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/3361
this guys sister went thru ringer ,didnt get treatment ,its not an easy watch..part 1 sad part 2 will make you furious

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Blue

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Notti
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Here is some information about Dr. David Martz who was also diagnosed with ALS, which turned out to be Lyme disease:

https://www.lymedisease.org/372/

https://www.lymedisease.org/421/

https://invisibledisabilities.org/awardrecipients/2011awards/2011-research-award-david-martz-md/


"Creek Trail Medical Clinic, Inc, opened its doors on January 7, 2008 to continue the work started at Rocky Mountain Chronic Disease Specialists by Dr. David Martz.

Dr. Martz in a “pay it forward” manner opened RMCDS to treat patients who had Lyme disease and especially those patients who had neurological disease created by Lyme.

Dr. Martz himself had been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig disease which is uniformly fatal.

When it was discovered that he actually had Lyme disease and was treated with antibiotics, all his neurological symptoms left. This is practically unheard of."

http://www.creektrailmedicalclinic.com/html/about.html


His case study:

http://www.ncbi.nlm.nih.gov/m/pubmed/17212618/

(breaking up the post for easier reading for many here)

[ 08-14-2016, 08:26 PM: Message edited by: Robin123 ]

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Catgirl
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Fascinating that Dr K suspects it's a bartonella mycoplasma (blue's post). He is incredibly bright and IMO way ahead of all the other lyme docs. Either way, I'd lay odds it's lyme related.

I had very similar bands as yours. 23, 39 and 41 are connected to FL1953.

Have you tried mild hbot? It is much different than regular hbot. Phoiph has a big thread on it. Also there is a rife machine called spooky2. It zeros in on stuff.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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t9im
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Yes, Dr. Martz, I first read about him in PW's Cure Unknown. He was given the ALS diagnosis by a couple of top nuero's in the 2003 time frame.

If you have the book you can go to the back and see the references re. Dr. Martz.

I met him in October of 2014 in Washington at the ILAD's conference. I think he still has to take meds or relapses.

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Tim

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bluelyme
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That he is still kicking is amazing ...first Llmd said i would likely be on abx for life ..i wasnt/am not ready to accept that ?! But I wanna know which abx that knocked out his joint pain?...

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Blue

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Robin123
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Maybe you could contact him in CO -
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bluelyme
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The creek trail people were very nice ...she starts on roceph ,zith, rifampin and tinadazole until plateau and suggests ivig for what dr frid calls autoimmune encephalitis

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Blue

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dbpei
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I just watched this incredible series on Youtube that explains the potential overlap of neurodegenerative diseases, such as ALS, MS, Parkinsons, etc. and lyme.

https://www.youtube.com/watch?v=Fr61GV8JCYQ

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Lymetoo
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Thank you!!! There is hope for my fellow Texans!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Brussels
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The you tube video of dr Miller posted by dbpei speaks exactly about ALS and lyme.


Just watch the first 2 minutes:

Brain scan like MS, but physical examination like ALS or LouGehring's disease, he said = lyme neuroborreliosis!

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Oklast
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Keep'em coming. Thx!
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randibear
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a girl that I used to work with was misdiagnosed with ms.

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do not look back when the only course is forward

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