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Does this sound like Lyme?

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Posted 6/5/2015 3:20 AM (GMT 0)
Hi everyone,
I'm a 33 year old male with no previous health problems. Three months ago I started having PVCs. After going to the hospital and follow ups with a doctor, they said the arythmias were benign. A few days after this started I began to feel fatigued and this debilitating fatigue has not gone away. I haven't been able to work or so much of anything for over three months now. So far all of my bloodwork has been normal. I'm scheduled for a cardiac MRI later in June but so far everything shows that my heart is ok. The PVCs have slowed and almost gone away. So far no one has been able to diagnose me with anything.

I suggested a Lyme test to my doctor and they dismissed it, saying it didn't look like Lyme. After doing a bunch more reading online I definitely feel like it could be a possibility. Here are my symptoms.

Constant fatigue - not refreshed after sleep
Very dry mouth at night
PVCs and heart block
Chest pain
Shortness of breath
Shoulders aching
Eyelid twitching
Increase in floaters in vision
Facial flushing
Tinnitus
Lightheaded, dizzy
Disturbed sleep
Headaches, though I often would get a bad headache before this all started

For the past couple of weeks my breathing has felt really weird, like a menthol feeling in my throat.

So I'm looking for any help I can get. I'm frustrated because I feel like I'm not getting anywhere in the medical system.

Do you think it would be worth doing the Igenex testing?

I'm in Canada and I know the testing offered here is poor. Should I find a LLMD? Test first?

I should mention that I live in a tick zone and I am outside in the grass/woods quite a bit. I have never noticed a rash or a tick on me.

Thanks for the help!

Post Edited (BC Guy) : 6/4/2015 9:30:53 PM (GMT-6)

Posted 6/5/2015 4:34 AM (GMT 0)
Hi BC Guy - I am a BC gal.

Welcome to the community~

My GP did the Canadian test - two tiered - IFA was negative, so Western Blot wasn't done.

Then I went to a ND and had the Igenex test done -and I was Igenex positive.

If I were you, I would get the Igenex Western Blot done...I see a Lyme Literate ND in Richmond who is licensed to prescribe antibiotics. (if you choose the antibiotic route).

You can get any Dr. to sign the form for Igenex...just make sure you have the blood drawn on Monday, if possible, so that the sample isn't sitting somewhere over the week-end. Igenex is closed on the week-ends.
You could get the Igenex testing done while you wait for your Dr. appt. As, it is often several weeks to get into the Dr. The Igenex takes approx. three weeks to get your results.

If you want, you can send me an email regarding a LLND - I believe there are two ILADS affiliated ND's on the lower mainland, and Victoria has some ND's who treat lyme - but aren't ILADS members.

And, yes, those symptoms are consistent with lyme disease symptoms.

Oh - re: LLMD - there is one on the lower mainland - but he practices outside of BC Medical. So, you pay out of pocket, and they are quite expensive.
Posted 6/5/2015 4:35 AM (GMT 0)
I never noticed a tick or a rash either....just symptoms developing - and stacking up in a short period of time.
Posted 6/5/2015 4:38 AM (GMT 0)
Also wanted to mention - if you don't live on the mainland - ie. if you're on Vancouver Island, the one I see on the mainland will do several phone or skype appointments after the initial consult. I have only seen him twice in person - treating with him for 9 months now.
Posted 6/5/2015 5:01 AM (GMT 0)
Girlie, thanks for the info. I am on Hornby Island, so anyone I see ends up being a trip. Vancouver Island would be great, but my sister lives in Vancouver so I have a place to stay. Please send me some doctors names. By ND, do you mean Naturopath?

Also, did you order the complete Lyme panel or just the Western blot?

Thanks so much!
Posted 6/5/2015 5:03 AM (GMT 0)
By the way, I did the standard BC Med test today, like you did. I don't expect anything to come from it.
Posted 6/5/2015 2:38 PM (GMT 0)
I sent you an email. Let me know if you did not get it.

I forgot to mention in the email...if you see Dr. C. in Richmond, after the initial consult, he will do several telephone or skype appointments. They are usually half hour long and cost $80.


Good luck.
Posted 6/5/2015 5:32 PM (GMT 0)
I got your email. I can't thank you enough for all this great information. Going to call Igenex now.
Posted 6/5/2015 5:37 PM (GMT 0)
That's great - keep us updated...and you can email me anytime if you need more information.
Posted 6/7/2015 12:12 AM (GMT 0)
The onset of your symptoms sound like mine.
Heart palpitations was my first symptom.
Lasted 2 months and suddenly resolved.
Posted 6/16/2015 12:30 AM (GMT 0)
My Igenex test kit arrived today, so I headed off to my MD with the requisition form. She wouldn't sign it. I couldn't believe it. She spent the whole time on her computer finding bad press about Igenex. Here I thought I was off to the races. Now I can't get my blood drawn tomorrow. Very frustrating!

Julian
Posted 6/16/2015 12:41 AM (GMT 0)
Are you kidding? It's not costing her anything to sign it! That's ridiculous.

Do you have a chiropractor? They can sign it. any Dr.can including a Naturopath.

Are there Dr's on Hornby? Or do you have to go to Courtenay? How about going to a walk-in clinic?

I would just go to every walk in clinic until I found a Dr. to sign it.

So sorry you're having this trouble.
I didn't go to my GP, I went all the way to Victoria to a ND and paid for an appointment and she did the blood draw.
My GP has been receptive about my treatment, so she probably would have signed the form afterall.
Posted 6/16/2015 12:47 AM (GMT 0)
Yes there are doctors on the island. That's where I went. I don't have a chiropractor, but I might try a walk in clinic in Courtenay.

Who do the results get sent to?
Posted 6/16/2015 2:08 AM (GMT 0)
They get sent to the Dr. who signs the form...that turned out not-so-good for me.
As, I wanted the ND in Victoria to send them to me via email, as my GP wanted to see them, and I wanted to get some antibiotics from her to last until my LLND appt. in Richmond several weeks later.
She refused and said I had to drive to Victoria and make another appointment...before she would release them.
I was quite ticked off (sorry for the pun) and wrote an email...stating that it was unethical for her to hold my test results, since I paid for the test, and paid her for a visit for her to evaluate me and do the blood draw. She finally relented and faxed them to my GP.
My GP gave me 4 weeks of doxycycline when she saw the results....she has been really good at supporting me through this past year.
Posted 6/16/2015 2:13 AM (GMT 0)
I also wanted to tell you that the LLND in Richmond - is booking at least a month out for appointments.
So, if you're choosing him to see, you might want to make an appointment right after you send your blood work to Igenex. The igenex test takes approx. 3 weeks for the results. So, if you wait until the results are back, you will be waiting another month possibly.

If you decide not to treat, you can always cancel your LLND appointment.

If you're going to a ND in Victoria, I don't know how far out they are booking appointments. It might be sooner than 4 weeks. There are some LLND's treating lyme there, but I was told they're not ILADS affiliated.
Posted 6/16/2015 2:53 AM (GMT 0)
Good news. I emailed Dr. Chan and he sent me back a signed requisition form. So, I will be able to ship the test tomorrow after all. Yay!

I made an appointment with Chan right away when you told me about him, thank you. Still it will not be until July 9th. Was hoping for sooner as I have to travel to Vancouver for a cardiac MRI anyhow.

Thanks again Girlie!
Posted 6/16/2015 6:06 AM (GMT 0)
That's great - Just another piece of info: You should get your Blood drawn and sent to Igenex in the beginning of the week - you don't want it getting to California on Friday afternoon and sitting somewhere for the weekend (Igenex is closed weekends)

I think Tuesday should be fine - that should make it to Igenex before the weekend. If possible get it done in the morning.
I went to LifeLabs and they arranged for FedEx to pick it up.

Do you know what tests to get?

The WB IgM and IgG (test 188 and 189 I think) is the best one and any others you want to add on. That is all I got though.
Posted 6/16/2015 9:36 PM (GMT 0)
Got the blood drawn at Life labs today. Getting the Western blots you mention. It should be on its way now. Thanks.
Posted 6/16/2015 9:57 PM (GMT 0)
Okay, that's good. Now it's a waiting game - approximately three weeks.

I don't know what you're feeling - but I cried happy tears when I had the positive result...as I had unexplainable symptoms for over a year by that point. I was happy that my diagnosis was something treatable.
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