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Posted 10/7/2021 7:14 PM (GMT 0)
Hi. I don't know the best way to start so here goes.
May, last year I got a tick bite and didn't get it dealt with properly. They claim there is no Lyme in Alberta Canada. I started to get some strange symptoms consistent with Lyme/mold later on in Nov. By March 2021, after going to see several doctors, I had a number of 'somatic' symptoms as one doctor put it.
All the Lyme tests I did locally came back negative.
So I did the run around trying to find out what was wrong with me. I found some mold in my home so I vacated.
I went to see a couple of NDs and sent out tests for Lyme(Armin Labs) and mycotoxins(Great Plains).
I recently got back my Armin Labs test and I am told that it indicates that I have Lyme. The paraphrased results are:
All the Elispot tests came back negative.-indicating there is no current activities against Bb.
The CD57+ NK cells absolute. =44ul range 100-360. Which indicates chronic immune suppression, which could be caused by Bb or other bacteria.
The B.burg + afz +gar.IgG. positive
The B.burg + afz +gar.IgM. negative
The other antibody tests are negative.
The antibodies indicate humoral responses against Bb.

The Great Plains MycoTox test reports that I had zero mycotoxins in my urine that day except for Citrinin which was at 231. Range <25. about 10 times the amount allowed.
So I am at a loss to how to proceed.
From what I understand I have CIRS. Canada has one Shoemaker certified CIRS doctor which charges an arm and a leg for his services. I don't know that he would treat me for Lyme under their criteria(I may be wrong).
The doctor I went to see about getting the test for Lyme only treats it using a modified version of the Cowden Support Protocol, mostly antimicrobial tinctures. It is almost impossible to get antibiotics for Lyme where I live because the Armin test is not recognized as valid by our healthcare. I've started out on the Phase 1 part of the Cowden Lyme protocol which is building up a tolerance for Samento and Banderol.
I have also read that treating for mold needs to be done before you can have any success treating Lyme. I have gone out and bought a number of supplements for detoxification and binding the mycotoxins and have slowly started taking them.

My symptoms that are bothering me the most right now are neurological. Almost constant headaches. Inability to focus, anxiety, depression.
My headaches seemed to be associated with the anxiety. Ativan or CBD oil are the things that help.
I am sort of paralyzed now on how to proceed.
How important are antibiotics at this point?
Finding a LLMD in my area that can prescribe antibiotics is almost impossible. I am thinking of going to one in Vancouver, but the thought of the logistics makes my headache worse.
Are IV antibiotics any better at this point?
Covid and my financial situation make treatment in the US very difficult.
Any suggestions are appreciated.

Post Edited (Moggy) : 10/7/2021 1:18:52 PM (GMT-6)

Posted 10/7/2021 10:52 PM (GMT 0)
Welcome to the forum !

“It is almost impossible to get antibiotics for Lyme where I live because the Armin test is not recognized as valid by our healthcare.“

Even if you found a Dr to treat based on that test - he/she wouid only treat you for a few weeks.
A non Lyme literate Dr wouldn’t know that chronic Lyme takes many months to years to treat.
Since you have chronic Lyme you will need longer treatment time .
Posted 10/7/2021 11:01 PM (GMT 0)
“Finding a LLMD in my area that can prescribe antibiotics is almost impossible. I am thinking of going to one in Vancouver, but the thought of the logistics makes my headache worse.
Are IV antibiotics any better at this point?
Covid and my financial situation make treatment in the US very difficult.”

If you go see LLND EC in Richmond he will do several phone appts after the initial inperson visit.
You would need to fly there once a year - or maybe not now due to Covid - maybe you could do a Zoom appt.

If you’re southern Alberta - you could go to LLMD MR in/near Seattle.

IV abx would prob not be offered…
Posted 10/8/2021 10:32 AM (GMT 0)
it sounds like you have already done some useful research on the disease and how it can be treated

the two main treatments approaches that seem to help most people the most are as you have already found:
-antibiotics
-herbal medicines
they can be and often are combined

together with diet and lifestyle changes this is what's seems to help the most people the most
( there are many more fringe therapies that some swear by and may indeed have some merit - but they are also more into the realms of the unproven scientifically, and are often expensive, and may therefore expose one to a greater risk of exploitation )

both herbal and pharma approaches often have to be tweaked or adjusted via trial and error to each patient.

the diet and lifestyle changes are not to be underestimated and i and many other here have found these changes to be just as useful if not more so than antibiotics

for more information on each approach some of the best resources are the following two books
- how can i get better - Dr Richard Horwitz - for the more pharma based approaches
- healing lyme - 2nd edition - by Stephen Buhner - for herbal approaches

both are excellent resources for understanding the pathology of the disease and how to treat it

many people resort to self treating with herbs due to availability and financial constraints - in that case the above book by Buhner is invaluable.

some also resort to self treating with abx - but there are of course risks and a large amount of research and learning is required to do so effectively and safely - so its not for everyone.

if you can access a well regarded LLMD that's is the preferred way to go.
Posted 10/9/2021 2:10 AM (GMT 0)
Thank you Girlie and Garza for your replies.
I will probably continue with what I'm currently doing untill I can see the LLND in Richmond.
Posted 10/9/2021 12:11 PM (GMT 0)
Moggy,

Those mycotoxins are concerning. I just looked at the FAQ section on Great Plains website and saw this:

“ Q: How significant is citrinin elevation if all other markers have been cleared?

A: This depends on the level of citrinin. Citrinin can come from a variety of molds and a significant elevation of this marker could be indicative of an ongoing mold exposure.”

Have you done an ERMI or HERTSMI-2 on your home and workplaces yet to determine where you are being exposed?
Posted 10/9/2021 7:22 PM (GMT 0)
Thanks for your response WalkingbyFaith.
The mxcotoxin is also very concerning to me. I move out of my house before I got the results of the test. My brother is looking after the remediation. He has had a couple of companies come in, but I don't think they've done an EMRI test.
I haven't been working since the start of Covid. I might have had some exposure at my old workplace.
Posted 10/10/2021 12:48 AM (GMT 0)
Glad to hear you’re taking some kind of action. Wow! What a blessing that your brother is overseeing the remediation. It’s unbelievably hard when you have to handle everything yourself with no prior experience and an impaired brain and body. Especially if you’re a woman trying to handle contractors. I have PTSD from going through it.
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