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could this be lyme?

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Posted 4/6/2018 2:52 PM (GMT 0)
since december of last year i have not felt well. ive been to numerous doctors, had blood test..they seem fond of the cbc blood test in particular. they cant diagnose me im told they dont know or that they found nothing wrong. ive been feeling worse as time goes by. i dont remember being bitten by a tick but i live in eastern canada and we have many ticks in the area so it is possible. these are my symptoms...

headaches, often frontal, but sometimes on one side or on top
unsteadiness
forgetfulness..just today i was going to call janitor to open door for telephone company because theyre repairing my phone....as im dialing i remember phone doesnt work.
tingling in arms, and also strangely in head sometimes
neck stiffness and pain
muscle pain
arm weakness especially on left side, arm feels tired
sore throat
low blood pressure...low for me anyway 90/60
painful lymph nodes
upper abdomen pain
fatigue
just dont feel well.

im sure im forgetting stuff because when i go to doc i always end up forgetting a few things it takes so long to talk about it. thing that makes me think maybe i dont have lyme is that cbc blood test is always normal and i read lots of lyme patients have high white blood count. also i got flu this winter and i also read if you have lyme you dont catch things ilke colds and flu...but is it possible sometime?

i have no idea whats wrong with me...if not lyme i thought maybe fibro or cfs?.....but also the neuro symptoms have me afraid for brain tumor sad so actually hoping for lyme or something else over that. i had shingles at beginning of dec......maybe. i say maybe because i went to doc because of sore throat and ear but during exam she looked at back and said oh i have shingles.....she said i had some on both left and right side and i heard it only affects one side? also except for a day or two of itchiness i had no itching and no pain on back. so not sure if it was shingles?

sorry so long but ive went from being basically healthy to full of health troubles since mid nov, and getting really scared and stressed. any comments whether its saying sounds like lyme or doesnt sound like it would be helpful.
Posted 4/6/2018 2:58 PM (GMT 0)
whoops forgot muscle twitching that was one of first symptoms, it was all over but now usually in feet. internal medicine doc is sending me for all kinds of blood test one which is lyme test but i dont know which one it is.
Posted 4/6/2018 4:35 PM (GMT 0)
Sounds very much like Lyme and bartonella and maybe more coinfections.

Others will respond soon. We have other members from Canada who can help you find a Lyme literate doctor (LLMD).

We encourage all new members to check out the New to Lyme info at the top of the page.
Posted 4/6/2018 4:57 PM (GMT 0)
Hi tommymama - welcome!

I'm Canadian too. Unfortunately there aren't many options for treatment here.

If you're in Ontario, there are some LLND's that treat herbally. There maybe one MD that can do some pharma treatment - but I don't think long term.

BC has LLND's who can prescribe antibiotics.

Other than that, you are going across the border for treatment with a U.S.LLMD.

You can send me an email and I'll give you the options available here in Canada.
Posted 4/6/2018 4:59 PM (GMT 0)
Oh, and the CBC blood test being normal doesn't mean anything regarding lyme.

I had tons of blood work done...CBC, autoimmune, Vitamin D, Vit B12, thyroid, adrenals...etc..


What you can do is get an Igenex Lyme WB for $250. Would your Dr. be willing to sign the lab req?
Posted 4/6/2018 5:34 PM (GMT 0)
i am in quebec. i saw a few different docs in walk in clinic and hospital who had no idea whats going on with me. ive seen my own family doc a few times and she actually told me she doesnt know lol so she referred me to an internal medicine doctor. he just asked me about my symptoms and wrote them down. then sent me for a blood test he checked off about 20 things he wants tested lol one of them was lyme. i was impresssed he thought of it since no other doctor mentioned it at all. i dont know which lyme test it would be though. as far as my doctor willing to sign for lab req i dont know. i get the feeling she thinks this is all in my head or anxiety since she has mentioned it a few times. when i started getting sicker i wasnt feeling anxious though...now with all health problems ive been having i am pretty anxious.

girlie, all those blood test you had came back normal?
Posted 4/6/2018 5:59 PM (GMT 0)
also i am starting to feel like im losing my mind. thought i have all these symptoms i look ok and my family and friends think also mostly think its all in my head and im not that sick. i try to explain how i feel but most dont seem to get it. they say come and do this with us and i just feel ugh i want to sleep. sad
Posted 4/6/2018 6:15 PM (GMT 0)
I may have an option in Quebec - maybe a LLND who will sign the Igenex WB

The Lyme testing that the Int Med dr is referring to is most likely the standard Canadian test which will most likely be negative - but doesn’t hurt to do the test anyway.

Re; my blood tests

I had slightly lower vit d levels but nothing concerning and got them raised quickly.

I had high cortisol at one point - but it resolved quickly. I think the high cortisol was due to the stress of the pain I was in.

I think those were the only tests that came back that weren’t good - but didn’t explain my symptoms and when I retested again - they were good.

No autoimmune, no inflammation markers, etc
Posted 4/6/2018 6:51 PM (GMT 0)
i also had low vit d, and was anemic in oct doc prescribed iron and vit d and now theyre normal. i'll wait to see results of those blood test i just had and if theyre normal then maybe ill try that lldn doc. i also was sent for head scan because of my headaches, dizziness, forgetfulness etc hoping that scan result will be normal.
Posted 4/6/2018 9:15 PM (GMT 0)
geez, im going to keep adding symtoms lol...also seem to be sensitive to light now, looking at light hurts my eyes or the sunset didnt use to be a problem.
Posted 4/6/2018 9:37 PM (GMT 0)
I know - I had so many symptoms that I couldn't even recall them all when I was at my Dr. appt.

What works best for me is I start at my head and go down.

So:
HEAD:
- head pressure
- POTS
- memory loss
- tinnitus
- anxiety
- confusion

UPPER BODY:
- neck pain
- thoracic/left arm/hand pain
- shoulder pain
- elbow pain
- finger joint pain

LOWER BODY:

- knee pain
- foot pain

then I'd have to remember the body wide stuff:

- shivers
- sweats
- twitches

That was my 'short' list....lol.
Posted 4/6/2018 10:09 PM (GMT 0)
Sorry to say, but your symptoms really do sound like very common symptoms from tick borne infections / chronic infections.

You have several symptoms in common with me. Just keep in mind that a test interpreted 'negative' does not mean you are not infected. It means you do not meet the CDC's requirements for epidemiology surveillance.

I had some bands show up on 2 tests, but they were both listed 'negative'. I worked through a treatment protocol with my Lyme Literate doctor and have gotten soooo much better.

It makes so so mad that most mainstream doctors that totally disregard our symptoms. Especially the tangible measurable ones.

How can- twitching, Adie's pupil, tonic pupil, low blood pressure, and many more be considered "all in our head" or psychosomatic. What the heck, how is that possible!!!!! How can these doctors continue to carry that mentality when many of our symptoms are objective, tangible, measurable...

I would strongly recommend getting an appt with an LLMD.
Posted 4/8/2018 7:53 PM (GMT 0)
one thing that makes me think i may not have lyme though is as i said this winter i had a bad case of the flu...terrible tiredness, muscle aches, coughing, pretty high fever. ive read people with lyme dont catch colds or the flu is that true?
Posted 4/8/2018 8:03 PM (GMT 0)
I got a bad case of the flu about a year or so after I got Lyme. I definitely think it's not true that people with Lyme don't get the flu. I think it's that people with chronic Lyme don't get the flu as often, or sometimes they seem less likely to get it. I've heard of many people with Lyme who got the flu this past winter.
Posted 4/8/2018 9:11 PM (GMT 0)
I'm new to Lyme, but it's my understanding that Flu-like symptoms can be an early sign of Lyme Disease. A friend of mine went to the doctor thinking she had the flu. I'm not sure how they turned from the flu to a Lyme test, but the doctor knew that she has pets and lives in a wooded area. Low and behold, she had Lyme and not the flu. She got lucky. She was treated quickly and never suffered other symptoms.

Perhaps, what you thought was the flu was really your first Lyme symptom. Just a thought.

Find a Lyme Literate Doc and get tested. They can diagnose without following the CDC's guidelines.

Good Luck!
Posted 4/9/2018 1:19 PM (GMT 0)
I agree with NoTime4Lyme here. That does not rule it out. at all
Posted 4/9/2018 3:26 PM (GMT 0)
i had bloodtest today for things doc sent me for including lyme. but i guess theres a good chance even if i have lyme itll test negative, at that point if everything else is negative ill try to find a llmd around here...g-ju i actually did have the flu i went to the hospital and they tested me for it and came back positive. it lasted quite a long time and after that i had a cold for a couple weeks. it was a long time till i was well again.
Posted 4/9/2018 5:21 PM (GMT 0)

tommymama said...
one thing that makes me think i may not have lyme though is as i said this winter i had a bad case of the flu...terrible tiredness, muscle aches, coughing, pretty high fever. ive read people with lyme dont catch colds or the flu is that true?

I wouldn't use that as a gauge at all....
Posted 4/9/2018 5:22 PM (GMT 0)

G-Ju said...
I'm new to Lyme, but it's my understanding that Flu-like symptoms can be an early sign of Lyme Disease. A friend of mine went to the doctor thinking she had the flu. I'm not sure how they turned from the flu to a Lyme test, but the doctor knew that she has pets and lives in a wooded area. Low and behold, she had Lyme and not the flu. She got lucky. She was treated quickly and never suffered other symptoms.

Perhaps, what you thought was the flu was really your first Lyme symptom. Just a thought.

Find a Lyme Literate Doc and get tested. They can diagnose without following the CDC's guidelines.

Good Luck!

Hi G-Ju - welcome!

Are you currently treating lyme disease?
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