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Posted 5/18/2015 9:17 PM (GMT 0)
So I'm still having crazy neuro symptoms and anxiety.

A couple weeks ago my IgG-IgM was negative, as it detected antibodies to burgdorferi, garinii, and afzellii.

Should I test again? People think I crazy for considering it, but I'm so sick right now.
Posted 5/18/2015 9:52 PM (GMT 0)
Did you get tested through Igenix? If not I would. Also go to a lyme literate Dr. so you can get treatment for your symptoms.
Posted 5/18/2015 10:01 PM (GMT 0)
No the test was through a lab here in Calgary. I'm just really confused. I have gone so downhill after a round of abx, and they scare me.

The doctor guaranteed me I don't have Lyme. It pizzed me off because I feel so poisoned. It's so frustrating thinking I may never get answers to this ongoing battle.

No sign of infection...all blood work is great, and negative on this Lyme test. So angry :(
Posted 5/18/2015 10:14 PM (GMT 0)
How much were you detoxing before, during and after the abx?

Have you ever been tested for the MTHFR genes that can interfere with the bodies ability to detox?

If you had antibodies to burgdorferi, garinii, and afzellii, more testing won't reveal anything that you don't already know. You need treatment, but you also need to be able to detox well.

So I would say that you should save your money on the testing for Lyme and test for MTHFR instead. Then we can help you figure out if that's the issues or if there is something else going on that is stopping your healing.
Posted 5/18/2015 10:59 PM (GMT 0)
Thanks trav.

Like said earlier, I have been not well for 10 years after the spider bite. I functioned wellish though.

This past year was nuts though. All I did was study, write tests, complete my PhD and complete liscencing tests...while working full time. Didn't eat well...didn't sleep well. Then I got sick with some sort of virus, took some antibiotics and a corticol steroid and all hell broke loose. I'm starting to have about 2 days a wek where I feel okish, so grateful for those. Then I feel like I should be in the ER. The tingling in legs is not as severe, but still prevalent.

In a way I'm happy the testing for Lyme is negative, but now just more questions as I'm pretty convinced my immune is compromised.

Thanks
Posted 5/19/2015 2:40 AM (GMT 0)
Sounds like typical Lyme, to be honest. Had you not been under so much stress and used the steroids (they lowered your immune function) you my get have been fine.

And remember, you may have had what is considered a negative test, but unless you have had adequate treatment, you have the infection still. You have symptoms, so it pretty safe to say you have the infection(s).
Posted 5/19/2015 3:09 AM (GMT 0)
Ahh Trav. Why do you have to make me second guess everything?

I'm joking. It does fit for neuro Lyme. I need to get my anxiety under control. Not knowing and feeling awful is a terrible experience.

So you said you wouldn't bother with the testing given my negative results. Now what then? Will a LLMD treat me based on clinical symptoms? I don't want antibiotics and she wanted to push them. She wanted to run tests for thousands, but i went the other route and went through the medical system. I'm not sure I want to spend tons of coin based on this result (yes I know there are false negatives). I've had this crap for 10 years and I feel so impotent.
Posted 5/19/2015 4:05 AM (GMT 0)
Hoshie, A LLMD's diagnosis should be a clinical one. Having said that, some of them do insist on more testing through Igenex.

My LLND did not - he just accepted my Western Blot from Igenex - it was positive, though.

I am not familiar what most LLMD's in the U.S. do for testing. Maybe there are others that will only require the Western Blot - runs around $200 plus Fedex charge and your Dr. appt. charge.

So, you're wanting to go the herbal route? Have you thought about Buhner's protocol - it is not very expensive and it's quite straight forward (easy to follow).

Here's a link to it...

buhnerhealinglyme.com/

I started Buhner's protocol on my own...while waiting to be tested.

There are other herbal protocols, Cowden is another one.

One of our Moderators, Traveler had success treating her lyme twice using the 'Chronic Tonic'. She orders in the dry herbs and makes a daily tea.
Posted 5/19/2015 4:16 AM (GMT 0)
Thanks girlie. Whatever is wrong with me, I kinda went into remission once before, so hoping through rest, diet and supplementation I can get back to 80-90% I kicked the sheet out of myself this year.

Antibiotics aren't for me :)
Posted 5/19/2015 3:07 PM (GMT 0)
Abx aren't for me either - haven't had any since 2007 when I tried to heal from Lyme with them and ended up worse.

Not treating the infections will only lead to continual decline, at least this was the case for me and many, many others. "Living with Lyme" really isn't an option. It's a life-s*cking condition.

You said you had antibodies to 3 different strains of Borrelia. So you have had testing that revealed at least 3 positive bands, right? Many doc's will treat based on that.

And you don't have to use abx - you can do it on your own, or you can find a LLND - Lyme Literate Naturopathic Doctor. If you would like to email me and let me know where you are located, I'll be happy to look to see if there is a LLND near you if you are interested. Or we can help you find an herbal protocol that you could use at home.

This is a true infection, so it will not just go away on it's own once you have had it for a while. It does come and go in it's severity, but why deal with that when you can be healed?
Posted 5/19/2015 3:44 PM (GMT 0)
Hello Hoshie,

The Canadian Lyme tests are very poor.  Not very many with Lyme test positive with these tests.  They may only be around 30%-50% accurate.   It is best to test with the Igenix Lyme Western Blot and play Lyme Bingo for the double star bands. 

I recommend you not go with a regular medical doctor for Lyme disease in Canada... Simply because Lyme is not on their "menu" list.  Each kind of Doctor is like a restaurant and really they only offer certain menu items but each kind of doctor is a little different , that is the way I see them.  The regular medical doctors are kind of like a franchise... much like McDonalds.  Unfortuneately Lyme disease is simply not part of their agenda as they are very black and white.  They want to see a peice of paper that they are familiar seeing as either positive or negative, they won't look at it any other way.  You are going to need to see someone who specializes in Lyme disease.


You may have been exposed a long time ago like you said... But your own immune system may have taken care of the majority of the infection in your blood, getting the infection in the brain is a lot more difficult for the immune system.

I am also a Canadian and live in Alberta... You have a few options living in Calgary... Actually Alberta's only Lyme specialists live right in Calgary so you have an advantage there. 

My suggestion is:

http://drtaylornd.com

There is another Doctor if you are interested in Richmond BC, that maybe cheaper and does phone consults.  You have an option of using antibiotics, herbals, or both.  The Canadian NDs for Lyme are actually pretty good and offer treatment plans on par with US LLMDs. 

 

 

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