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Posted 5/27/2017 1:29 PM (GMT 0)
Hi - I am a 50 year woman just diagnosed with ALS. I have had drop foot since December of this year which has progressivley gotten worse. I now have fatigue and it has gotten harder to climb stairs and have just slowed down. My first EMG test stated pinched Periphial nerve but my PT sessions did not help. I had a 2nd EMG with ALS neuro specialist in NYC and he diagnosed earlyALS. Of course I am petrified and have been living a nightmare for the past 2 weeks. When my husband told someone at work about the diagnosis they said they had a friend who was diagnosed with ALS but really had LYME disease. So...Ii went and looked back at the original Blood Tests that my GMD and see that I have equivical on my LYME test but didnt see a "blot" test done. Can anyone suggest a Lyme Dr in the NYC area who I might be able to see and go over my results and symptoms. I may be grasping at straws but im feeling desperate and afraid.

thank you for any help/assitance
Posted 5/27/2017 1:47 PM (GMT 0)
Welcome to our community justolemom,
I am so sorry for what you are going through. There are members here that have felt just like you do afraid and desperate for answers. You have found a wonderful place here.

The members are knowledgeable, experienced and compassionate.

We encourage all new members to read our"New to Lyme"page. It has excellent information that will be of help to you about Lyme and co-infections, testing, detoxing, success stories and so much more.

It is at the top of the page under topics.

Others that are much more experienced will be along soon to answer your questions.

"Girlie" nd "Traveler" have lists of LLmd's so you should enable your email. Then you can email them or post a new thread seeking an LLMD in N.Y.C.

I wish you the best of healing and hang in there you are not alone anymore, we all are here to helpand offer support.

Take care, Jo
Posted 5/27/2017 1:49 PM (GMT 0)
Definitely pursue with equivocal elisa test. Find a good LLMD to do proper testing. Also, it wouldn't hurt to go super clean with diet (paleo type, no gluten/sugar/maybe dairy, organic, non-gmo). Detoxing is important for any and all of us, so epsom baths, etc.
Posted 5/27/2017 1:52 PM (GMT 0)
Also, i think they should have done western blot with equiv elisa.
Posted 5/27/2017 2:01 PM (GMT 0)
Also you can email me I did hear of an excellent doctor there in NYC . I have not gone to her personally but hear good reviews. We don't post llmd's full names here to protect them. So that's why you have to email.
Posted 5/27/2017 2:26 PM (GMT 0)
Hi K07 - so are you saying that with the equivocal result on my LYME test the blot test would have been also done? I have tried to look at results for that type of test on my record but not sure how it would be listed.

Thank you Goshawk for any information, I did email you and activated my email as well.

thank you
Posted 5/27/2017 2:45 PM (GMT 0)
So I am a patient of Dr. S. Y. in St. Louis. I don't have ALS but have met one of his patients that does or I should say did. One of his patients Ron-recently wrote a book about his fight with ALS. I actually am currently reading it. Its called "An Unexpected Journey" I think you need to call Dr. Y.'s office to buy it.
Ron credits many books but the one he credits the most is called "Eric is Winning" You may want to read both.
Clearly you are in for a tough fight-throw every punch!

ps Ron has his email address in his book and will help others

Post Edited (magoo2) : 5/27/2017 10:50:35 AM (GMT-6)

Posted 5/27/2017 3:07 PM (GMT 0)
Hi JustOleMom!
Welcome to our community! I'm so glad you found us.

You've had a wonderful welcome so far, with lots of information shared. Let's see if I can add some more helpful information for you.

As suggested, please do read through our "New to Lyme?" thread, as it's packed full of important and helpful information, ​symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​And, here's another good place to find helpful detoxing rout​​​​​​​​​​​​​​​​​​​​​​​​​​ines​​:​​​​ ​​​http://www.tiredoflyme.com/detox-methods.html​​

Here is one (of many) story of a person that was diagnosed with ALS that actually had Lyme:
/www.lymedisease.org/372/
​

Yes, if a person has a response on the ELISA (which is what you had), the doctor should have ordered a Western Blot as well. These tests have a myriad of issues with them, but if someone has a response, then it should be noted and followed up on.

The main issue with these tests is mainly because they are not nearly as sensitive as claimed - because they didn't take into account that the Lyme bacteria will lower the immune response so that many can't get a response to the testing. There are many false negative tests, in other words.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​​​​​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​You ​​​​​​ ​​​​​​​​​​​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​​​You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ ​​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​​​​​​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

​​ ​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​Tick-Borne Disease Alliance at​: [email protected]​
​​

​​ ​​​​​​​​ILADS has their own referral system as well:
​​​​​​​​​​​​http://ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Posted 5/27/2017 4:11 PM (GMT 0)
Welcome, justolemom!


Many LLMD's don't even bother with the Elisa or IFA - just go straight to the WB.


My IFA (similar to Elisa) was negative when I first went to my Dr. and was tested with the CDC test.

I then tested with Igenex - Western Blot only and was positive.

I think you are wise to seek out a LLMD and have an Igenex WB done.
Posted 5/27/2017 4:16 PM (GMT 0)
Hi again, looked for the email but didn't receive it yet. Glad to see you received more responses from members. Are members are great!!!!
Posted 5/27/2017 5:50 PM (GMT 0)
Hi mom!

Again, very sorry you are here but so glad you found us. I wish more newly-diagnosed ALS patients would find their way here. It is a nerve-wracking time for you - I hope we can help answer some questions.

A little more info on the ELISA - if you're interested:
I also agree that an "equivocal" ELISA should have been followed by a Western Blot.

The ELISA is the 1st step of a 2-tiered testing process the CDC wants MDs to follow, which was designed for tracking the disease, not diagnosing it. So, unfortunately, the process and interpretation protocols are overly strict. It's part of the reason they're only 50% accurate and also why the CDC recommends MDs shouldn't use the tests alone but also with a clinical diagnosis based on exposure and symptoms. However, most MDs leave out the last part that requires them to evaluate...

Both tests are serology tests so they depend 100% on a functioning and reliable immune response - they are looking for antibodies the immune system produces against the Lyme bacteria, pieces of it or its DNA, not the Lyme bacteria itself.

- the ELISA is unfortunately not very sensitive (as 1st tests in 2-tiered testing are supposed to be) so it's looking for something wonky in your immune function to signal that it's fighting something. For Lyme patients, this test is usually false, even with the presence of the microbe - you can be so sick that your immune system just isn't working well. Studies have also shown that the Bb learn to deactivate the immune response. So, you're in the minority for producing a positive ELISA!

- The WB is to be administered next if the ELISA is positive and is not to be administered if it's negative (the "not administering" is one of the reasons the testing methodology is mostly unreliable... but that's a different discussion). The WB is thought to be very specific for Lyme disease but the test has a 50% reliability, mostly because MDs don't know how to interpret results correctly or why.

And after all these decades they have failed to do better. It's backwards and upside down. And it's primarily why people like you are told they have ALS. I'm not sure if you've researched ALS, but like Lyme disease, it's mostly a clinical diagnosis... when I was told I had MS or psychosis ;) I decided I needed to dig deeper and have a lot more conversation about it. I'm glad I did.

So that's a little info on the tests that maybe you didn't really care to know!

Please ask any questions you have... we've had good ALS discussions here if you'd like to do a search. There is the infamous Dr. Martz who cured his "ALS" w/ IV abx for Lyme. Here another video a poster shared. I shared this with my mother recently, who has a friend who was just dx w/ "early ALS" and it was helpful.

Dr Al Miller
/www.youtube.com/watch?v=Xic4I9Jh_WE

-p

Post Edited (Pirouette) : 5/27/2017 11:55:13 AM (GMT-6)

Posted 5/27/2017 8:25 PM (GMT 0)

justolemom said...
Hi K07 - so are you saying that with the equivocal result on my LYME test the blot test would have been also done? I have tried to look at results for that type of test on my record but not sure how it would be listed.

Thank you Goshawk for any information, I did email you and activated my email as well.

thank you

Yes, I'm pretty sure they automatically run a western blot when result is positive or equivocal. Was it through labcorp? If so you can create an account and view all labs. Maybe it was done and you never received a copy?
Posted 5/27/2017 9:37 PM (GMT 0)
Have you had your magnesium and vitamin levels checked?
Posted 5/28/2017 12:28 AM (GMT 0)
DNA connexions Lyme & Co's VERY accurate testing. Instead of looking for your own bodies reponse it looks for the dna of the pathogen. Its a urine test. Could be JUST the ticket-so-to-speak???
Posted 5/28/2017 5:50 AM (GMT 0)
You may want to see Dr j not the common one, the one in Rockville. He sees patients himself, he tends to see a lot of misdiagnosed ALS patients that get better with him he describes some of these patients case studies on his blog lymemd.blogspot.com. Two of my friends saw him and are in remission now. Also not als, but my best friend was diagnosed with multiple sclerosis she also had drop foot as her first symptom. She's on iv antibiotics now and progressing rapidly it ended up being lyme. Good luck!
Posted 5/28/2017 7:01 AM (GMT 0)
After all I've learned... Als is a ****ing dirty disgusting lie! Every person I've talked to who had been told they have als and does the right testing, has Lyme n cos,including me. This is is just as bad as denying Lyme or the Lyme cryme hell I think its all part of the same cesspool.
Posted 5/28/2017 7:45 AM (GMT 0)
Randy and mc are right ...dna connexions needs no doc ..in my muscle wasting and nerve damage it has been bartonella and lyme with mycoplasma ..

my nurse has resolved her drop foot with bvt and iv h202
kari32 mother has had some improvemwnt on iv rocephin ..
i have regained streghth with abx and many modalities.any diagnosis ending in syndrome means the doctors arent willing to find the root cause but are happy to describe the symptoms as a illness.this includes sclerosis where it be arterys ,nerves / motor neurons ,or multiple areas .

The best explanation i found is www.shackel.org/mytheory.html. There is usually a pharma insult that starts it , sulfa ,statin ssri etc ?..he used tinidazole and ozone and nutrition i believe

creek trail protocol includes iv antibiotics and orals til pulsed the she treats babesia .i have posted this before .please do not accept anything less and start treatment asap before any more damage is done by the pathogens .david martz said als lyme is tricky to treat because you want it aggressive enuff to stop but not damage any more nerves with herxing
Posted 5/29/2017 1:48 PM (GMT 0)

goshawk said...
Hi again, looked for the email but didn't receive it yet. Glad to see you received more responses from members. Are members are great!!!!

Can someone please help me with turing on my email? I thought I had it done but just tried to send a test email to myself and did not receive it. I must be missing a step.

Thank you and Thank you everyone for all the support and information. I am feeling blessed to have found this website.
Posted 5/29/2017 2:42 PM (GMT 0)
I believe you have your email set up. Just to double check, I sent you a test email. =)

Keep asking questions!
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