Hello my name is Randy i am single dad in loveland,co.
I could not find a welcome thread[maybe i didnt look hard enough] to introduce myself so i figured i would just do this.
I have looked through the "sticky" newcomers thread and it is fantastic info.
I have not been formaly dx with lyme but with als instead.
I have had 1 Elisa test that was negative but i call bs.
I have more lyme than als symptoms and im considered a slower progressor of als. My frs is 44 of 48 since my hands[atrophy] and speech are only affected.
I have had symptoms for at least 2yrs. Originally started with odd vomiting daily like i was prego then sever night sweats and fatigue. Then most of that stopped then i got a odd form of feeling like passing out but usually fluid would fix this even though i was hydrated. This has since subsided as well as i drink 2.5 liters a day of water no mater what and have drastically changed my diet. I also have odd pain, hand neuropathy & pain with random tingling, limb weakness and crazy cold feet along with odd vision issues sometimes and concentration is a bit a skew with a dash of crazy back pain.
Heres the kicker....whenever i take a supp beside vd3 & try to detox with natural foods i get odd panic attacks or a physical reaction of some kind. All my research say lyme not als but idk. I am scheduled to a functional med doc in oct for more blood testing through igenix and advanced.
I found this place to be the most appropriate and kind lyme site so i joined to prep'd in the event i get a positive dx.
Thank you.

My doc appt is with the only naturopath near me. He has some good reviews and he used to be cheif medical officer for nasa. He is uber expensive lol. So we will see.
Thank u for the warm welcome Pete.

I will pete. I have neglected to up till now cuz ive been overwhelmed after being given a death sentence in june.
But im gunna change that.

Hi Randy - welcome!

PeteZa has given you some good information.

You won't be the first person diagnosed with ALS when it was actually Lyme Disease.

I'm glad you are going to be tested via Igenex in October. Don't be surprised if the Functional Medicine Dr. isn't 'on board' with lyme being a diagnosis.
When you get those results, please post here. Even if you get a negative test result on the Western Blot - you may have some IND or positive bands that are lyme specific...and are significant for a lyme diagnosis.

I don't know if you've heard of Dr. Martz? Maybe if you've watched the Under Our Skin Video you will know who I'm talking about.
He is a Dr. and was diagnosed with ALS - was very weak. Tested negative on some lab tests for lyme...and then tested through Igenex, got a positive and treated. It was a misdiagnosis. This was several years ago...and he is fine today.

Here is a link to Dr. Martz talking about his experience.

/www.youtube.com/watch?v=UY9FdULDV6M

It sounds like you have researched a lot...good for you.
Sorry about your mother.


I didn't hide it from my son. (He is not a child - he was 20 when I got lyme) - But I put on a brave face for him. I know others disagree with that...think I shouldn't do that. But, the way I see it...he doesn't need to be more worried than he already is. We have always been close...and I know it would worry him if I shared all the gory details with him...not necessary IMO.


I hope you come here for support...ask questions...or just to vent when you're having a rough time. This community has been a life-saver for me.

Hi randy ..i was from boulder and have the same wasting in the hands ...do read the story of dave martz from colorado spring s ..his protege still pracices and she is pretty good ...
Are you going to see dr carnahan?..
When i went to a func doc here the nurse had a als diagnosis ..and oh sweetie you have lyme when i showed her my muscle wasting ...she has stopped it and healed some with a few years of bvt ,hbot ,h202 and herbs and iv abx .

i have done much research and belive it is a bartonella and mycoplasm that infects the nerves ...start some treatment right away ..i procrastinated installing my port and starting treatment ...rife has helped but bvt with iv abx has halted progression ...it aint cheap .but life is precious ..ther is a thread i will bring up where we talk about this ..some have had tesoultion some get better some are skin and bones ...

order some Zithromax and minocycline and rifampin .. from adc ..and see if it helps .....go slow and low if you kill too fast it kills more neurons
in my testing i have found borrelia ,toxoplasmosis (protozoa rhumatica ) mycoplasm bartonella ,giardia and ascaris .

I have a 4 yo and will fight to last breath ...watch under our skin ,under the 8 ball and justin and christie ....she had gastro stuff like you..

The links are on a thread a while back ..and i will bump that other one ..
welcome sorry godspeed you are not alone

join lymenet flash and send me a pm or enable your email we can chat i can send you info. It is lyme i confirmed with a microscope at 1600x you can see the spirochetes

Post Edited (bluelyme) : 9/29/2016 11:40:51 PM (GMT-6)

darn blulyme! Thank u for the new info. I will enable the email. The doc im going to see is dr RB in fort collins.

Post Edited By Moderator (Girlie) : 9/30/2016 1:07:55 AM (GMT-6)

Thats what i figured but i saw other doc names so i thought it was ok. Thats why i intially just stated his credentials & city.
Thanks for the formal heads up.

Hi Randy!
Welcome to our community! I'm so glad you found us.

This is how we do our "Intro's" - just start a new thread! So you did good!

If you don't believe that the doc you are scheduled to see is one to help you heal, here are some more resources to look for a LLMD:
For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, 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 be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org​ for LLMD referrals.


You 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​​


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

And www.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs 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.lymenet.org/BurrGuide200810.pdf

Thank u everyone for the warm welcome and kind words. Ive decided to get back to detoxing & killing any fungi gently with sauna,soaking,bentonite clay,lemon,cinnamon,garlic,coconut oil,probiotics,electrolytes & of course maintaing a proper diet.
I have already experienced what i believe is die off so something is in me and i want it out. Its funna suck but i know at some point i will feel better.

Thank u krimpet. I have thought about advanced and it seems their pricing is the same...expensive as hell lol as other places. But the waiting 16 weeks for results would suck lol
I just went and did another Mayo lyme test which i assume will be negative again but we shall see.

Yes i believe he will treat based on symptoms. Idk for sure yet though.