Needing answers to possible Lyme disease

Hi everyone,
I've come here to ask for some advice.
For about 3 months I have not been well. It started with just not feeling like myself. Then I began to get serious hair loss, which is still ongoing. I have lost at least half my hair, and I also have a spot of alopecia confirmed a (clueless) doctor.
My main symptom is that my legs have absolutely no energy. They feel like jello. If I try to walk downhill they tremble and all I want to do is lie down. I have had this weakness in my legs every day for the last month at least. I have one or two days or relief, but that's it. I've had to give up my job and my newly found love of rock-climbing because I have no energy or motivation anymore.

I have been to loads of doctors, and had loads of tests done. However, I went to ask my doctor for a Lyme test and he basically shrugged it off saying that it wouldn't be necessary. Feeling weak I agreed, but also knowing that the ELISA test done here in Canada is practically pointless anyway.

My job that I was doing since April involved working outside and doing a lot of wading through deep bush and grasses. Stupidly, for a lot of those days I wore shorts, but didn't worry about getting Lyme disease as I was told it doesn't exist in Alberta. Having ruled out most diseases, I'm starting to think that maybe I do have Lyme disease. A summary of my symptoms:

Weak trembling heavy legs
severe hair loss with alopecia
Tired and a feeling of hopelessness all the time
Stiffness in my hand joints (particularly the left one that I use)
Feeling of detachment, demotivation
cloudy thoughts/brain fog
Depression (could be from having an undiagnosed illness, who knows)
A cough (always with phlegm) that has now lasted for 2 weeks with no other cold symptoms
Currently my calf muscles ache as though I ran an hour when in fact I only walked 30 mins.
Sleeping 10 hours every night, waking feeling unrefreshed
Crazy dreams and nightmares (never had many before)
Chest wall tenderness
Pain/tightness below my ribs at the side
A change in bowel movement 3 months ago. And have not had a normal one since. (loose stools and undigested food)

I do not recall being bitten by a tick, or seeing any sort of rash.

I have given up on the regular doctors. The last time i saw my doctor he said to me that there is obviously something wrong with me but he couldn't tell me what, and to come back when my symptoms worsen. Great!

I saw a naturopath, who has given me herbal supplementation including an adrenal cortex supplement. This hasn't helped at all. She has suspected that I may have Lyme disease and says that in order to test for it at the Igenex lab it's going to cost me $800. So it's taking a huge gamble: do I pay the money to risk getting a negative result, or wait it out to see if my symptoms magically improve?

I would so greatly appreciate some input from you if you think I should get the test or not.

Welcome!

Sorry for the reason you're here but glad you found us!

Your symptoms could be a sign of Lyme....and it's possible they're a sign of an underactive thyroid....or both.

That said, the Igenex test ran me $260 last year - I'm not sure where the $800 figure came from.

The fact that the naturopath gave you an adrenal supplement tells me that she obviously thinks you have adrenal issues which can cause hypothyroidism.

You could try some Oil of Oregano to see if you react to it. If you do, that's a sign you have Lyme and then it would be prudent for you to get the Igenex test. Lyme is waaayyy too serious to consider otherwise.

In all honesty, I'd rather see you get the Igenex test ASAP....you are dealing with too many symptoms already.

Please read our "New to Lyme? Start Here!" thread that sits at the top of the forum. It contains lots of useful information including symptoms lists, test interpretation, detoxing suggestions and more.

Best of luck to you moving forward!!

Hi Floza!
Welcome!! I'm so glad you chose to join our community!!

I can see that you have been give great information so far, but I saw that you are moving to LA - would that be Los Angeles, California? If so, here are some resources for finding a LLMD/LLND in that area as well:

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.


You can email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also 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/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) 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:
http://www.ilads.org/lyme/treatment-guideline.php