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Ordering tests - quick question...lol...

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Posted 2/12/2020 1:35 AM (GMT 0)
Hi everyone!

Been lurking for a bit, reading as much as possible. I’ll give a better introduction/background at some other time - “what a long strange trip it’s been”.

Because I am currently in a location that a LLMD/LLND is not accessible for me, I am in the process of ordering my own tests from Armin Labs. They are suggesting certain tests based on my completed checklists for Lyme/Co. But some of the info I have read/watched/studied online from Lyme specialists suggest that coinfection tests are not that accurate and can be a waste of money - and that a clinical diagnosis for these is better/more accurate. So I wonder? Is this true? just get the Lyme elispot & tickplex done now....because if you have the Lyme you probably have the rest of the b’s, etc. anyway?

Also, because I basically lived in the woods on the southwest coast of Canada for over 25+ years - I was wondering about adding the B. Miyamotoi test as well. Good idea for west coasters? Seen a lot of “new” birds coming north for the summer over the past few decades (from California maybe?).

So... to phrase this correctly - since I am specifically not asking for medical advice; What would you do if you were ordering the tests for yourself from Armin Labs in this type of hypothetical situation?...

Bitten probably multiple times over many years, last time for sure (documented) in 2014 with full typical Lyme symptoms. Ongoing “wandering” symptoms of “you name it” - most dr./hospital checked/tested as “we don’t know”. So, not acute but long-term chronic stuff.

PS. Why leave it so long? All my crazy symptoms & “negative” tests (incl. recent Elisa) attributed to my cervical dystonia (22 years now).

Thoughts? Thanks!
Posted 2/12/2020 2:36 AM (GMT 0)

HoleInMyHead said...
Hi everyone!

Been lurking for a bit, reading as much as possible. I’ll give a better introduction/background at some other time - “what a long strange trip it’s been”.

Because I am currently in a location that a LLMD/LLND is not accessible for me, I am in the process of ordering my own tests from Armin Labs. They are suggesting certain tests based on my completed checklists for Lyme/Co. But some of the info I have read/watched/studied online from Lyme specialists suggest that coinfection tests are not that accurate and can be a waste of money - and that a clinical diagnosis for these is better/more accurate. So I wonder? Is this true? just get the Lyme elispot & tickplex done now....because if you have the Lyme you probably have the rest of the b’s, etc. anyway?

Also, because I basically lived in the woods on the southwest coast of Canada for over 25+ years - I was wondering about adding the B. Miyamotoi test as well. Good idea for west coasters? Seen a lot of “new” birds coming north for the summer over the past few decades (from California maybe?).

So... to phrase this correctly - since I am specifically not asking for medical advice; What would you do if you were ordering the tests for yourself from Armin Labs in this type of hypothetical situation?...

Bitten probably multiple times over many years, last time for sure (documented) in 2014 with full typical Lyme symptoms. Ongoing “wandering” symptoms of “you name it” - most dr./hospital checked/tested as “we don’t know”. So, not acute but long-term chronic stuff.

PS. Why leave it so long? All my crazy symptoms & “negative” tests (incl. recent Elisa) attributed to my cervical dystonia (22 years now).

Thoughts? Thanks!

Welcome to our community!

Many (most?) LLMD/LLND’s will accept just the lyme testing and then either clinically diagnose the coinfections OR just treat the three B’s. (Borrelia, Bartonella, Babesia

BUT, if you have the $$ it certainly won’t harm getting coinfections tested.

I live on the WC of Canada and was initially treated with a LLND - but have now moved on to DrJ in Washington, DC

Would cervical dystonia even explain all your symptoms?

Are you still living in BC?
Posted 2/12/2020 4:38 AM (GMT 0)
If it were me and I could swing it $$ wise, I would test for coinfections, too. If the tests are negative, you already know that doesn’t mean you couldn’t have it. But a positive test for anything after years of not knowing - that’s priceless to me. A positive test takes some of the guesswork out of the equation, and the guesswork can be absolutely maddening.

Welcome to the forum!
Posted 2/12/2020 2:46 PM (GMT 0)
If you genuinely never plan to seek out the services of a LL doctor, then I would skip the tests and treat first for whichever infection seems strongest. But if you think there's any chance you will travel to see a doctor or see one remotely (through the phone or video chat) then I think it's helpful to have the tests. If you test negative for infections you suspect you have, then re-test in a year. (As my immune system has gotten stronger, I have tested positive for more things, now that my body is capable of making antibodies to them.) Of course, most LL docs will diagnose these infections clinically, based on signs and symptoms, if testing is not an option or if testing is negative. It's not that important to have positive tests with one LL doctor, but it becomes helpful as you see other folks - primary care, emergency personnel, neurologists, etc. - and are asked to describe your current health and explain all the things you are taking. (If you say your LLMD diagnosed you clinically, then people think you are being duped. If you hold up a positive test, even from a lab they've never heard of, then they take you a bit more seriously.)

All of that said, restoring healthy functioning in your gut, immune system, and any other area of dysfunction should be a major priority. Some people find treating infections very helpful, but for others, it's the attention to the systems that have been damaged that makes them begin to heal and find symptom resolution. Diet, stress, nutrients, hydration, and your overall toxin load all matter, too. Seems to me that most find a balance between supportive and antimicrobial treatments, so you don't have to try to annihilate all the microbes in your body in order to see some improvement.

And welcome to the forum! We hope to hear more from you.
Posted 2/12/2020 4:42 PM (GMT 0)
Girlie

- Thanks!
My thoughts were to add on the b.miyamotoi test because of the north-south flight pattern of the birds from California. I guess my question on that - was it showing up on other’s tests along the west coast of NA? After sleeping on it I think I will include it anyway. As for confections I still haven’t decided since in all like likelihood I will have a more complete testing done by IGeneX in the future once I see a LLND/MD.

The symptoms I have had from tick bites cannot be attributed to my long-term Cervical Dystonia. Although there can be some overlap, such as tremor, etc., it is a neurological movement disorder without any inflammation. Correct me if I’m wrong, but it seems that Lyme/co can be the reverse; foreign invaders of the host causing the body’s protective systems to run amok, with neurological issues potentially being one of the symptoms. The dystonia specialists in Vancouver have not seen a patient exhibit typical dystonia symptoms and then suddenly almost a decade later have all these unexplainable inflammatory type “wandering” conditions. I was a novelty. Tired of tests....lol.

Yes and no to location question. I lived on the Sunshine Coast for 25+ years but just recently moved to small city Alberta for family reasons. But I really really miss the coast and hope to move back some day.


WalkingbyFaith

Thank you!
Yes, the guesswork is maddening! As I know from being a veteran dystonia warrior, we are our own best advocate. As mentioned above to Girlie above, I plan to see a LLND in the future and would like to get tested by IGeneX for a “second opinion” confirmation, assuming the Armin test is positive for borrilia. I don’t know if having the coinfections tested twice is worthwhile or not. I’ll think more on that.


saraeli

Many thanks!
Yes, I do plan to seek out a LLMD, particularly if the Armin tests return positive. It just turned out that where I moved to does not have any nearby, and I don’t travel well. A video or telephone consultation is an option, but I have already thought that through and dismissed it, since I would just be confirming what I already know. On the Armin checklist for Lyme I related to 22 of the 27 symptoms. So I figured I would put off seeing an LLND (for treatment) until I received the Armin test results.

Immune systems are interesting. Depending on our DNA, our consumption habits past and present, and of course past and present environment, body reactions are so varied.

Fortunately, I have always had a very strong immune system, almost never catching a cold or flu over the past 3-4 decades even though I was exposed to sick children (normal sicknesses) on a semi-regular basis. I have been gluten and dairy free now for 6 months, and have practiced meditation for over 4 decades (how old is this guy?....lol... it just was the thing to do back then - and I just didn’t stop). Stress is certainly a trigger for poor health, and meditation and QiGong help me keep that under control. I live a very clean healthy lifestyle, concentrating on my mental and physical health. Sounds similar to you...

Unfortunately, since I was initially on so many meds for my dystonia (particularly strong painkillers) I observed and tolerated my “new” symptoms. Since the specialists said their source was unknown they assumed they “probably” had something to do with dystonia (yeah sure). All of the doctors said it could not be Lyme since it did not exist in BC - until recently. Elisa when finally done was negative.

Many thanks for your thoughts!
Posted 2/12/2020 5:10 PM (GMT 0)
Sounds like you have a great foundation! Very cool about the four decades of meditation. smile Clearly you are good at committing to helpful practices and following through. I'm excited for you to have this new angle from which to approach the issues you have been dealing with. My partner was diagnosed with dystonia years ago, but the symptoms stopped with a year of physical therapy, biofeedback, and meditation. Not sure if it was a misdiagnosis or not. I imagine that many cases of dystonia might have an infectious disease that attacks nerves underlying them, like Lyme and Bartonella, or possibly mold.
Posted 2/12/2020 7:26 PM (GMT 0)
“ Yes and no to location question. I lived on the Sunshine Coast for 25+ years but just recently moved to small city Alberta for family reasons. But I really really miss the coast and hope to move back some day.“

There is an MD in Alberta (I think Calgary?) Dr R Hawkins.
He is treating patients with LD.
I know he wasn’t taking on new patients last year. - but maybe he is now. Worth a call?

I guess the closest LLMD would be MR in Seattle. He may do phone consults after an initial in person appointment.
Posted 2/12/2020 8:03 PM (GMT 0)
Girlie

Yes, I have read an interesting Lyme story involving Dr. Hawkins. He is on my radar for sure.

Saraeli

Yes, over the years I have seen a lot of unusual conditions on the Cervical Dystonia bulletin boards. Unfortunately, seeing more and more younger people with it and/or unusual other stuff going on. Really makes one wonder, since it was well known that for most people it occurred around age 40.

There are “types” of Cervical Dystonia that fall under the general umbrella, such as spasmodic torticollis, which is typically brought on by trauma. Then there are also prescription drug side-effect accident ones, hereditary ones, and the more common “others” that they just don’t know (idiopathic, such as mine).

I try to keep an open mind about everything - and yes, it has crossed my mind that infections/ toxins could play a part. We hardly ate any processed food back then, and “snacks” didn’t exist....lol. Wow, it is hard to find real food nowadays. I remember as a child in the 60’s all us kids growing up in Banff would ride our bikes behind the mosquito fogging truck because the fog had a sweet smell...lol. Who knows what that was? Crazy. We played in the woods all the time and were bitten by all sorts of bugs too. Glad to hear your partner got over it - it could have been a short-term stress induced type of dystonia - but doctors like to pigeon-hole things they are not sure about.

Anyway, thank you all for your thoughts. I will post when I get the Armin Lab results.

Cheers!
Posted 2/12/2020 8:36 PM (GMT 0)
Ahhhh DDT! That was before my time, but the garbage I ate, and the cleaning products I used when my family did janitorial work, and all the chemicals I used for cosmetic purposes - I cringe. I have to believe that we can move some of those things along through our systems, and regardless we just have to do our best!
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