Lyme and mold diagnosis, questions

Lasek said...
Hi guys and gals, nice to meet you but sorry you're all here too!

After a year and a half of eye floaters, progressively severe fluctuating tinnitus and hyperacusis, visual snow, double vision, trouble tracking objects, flashes of light / dots in retina, muscle twitches, TMJ, and a bunch of other neurological issues, I finally got some kind of diagnosis when no other doctor could help me. I've come up positive for Lyme via c6 peptide ELISA (which in Canada replaces the standard Elisa and western blot), and I've been treating that with a month of minocycline , which I stopped two weeks ago, and have started the Buhner protocol. Knotweed, cat's claw, Chinese Cats claw, egcg, bone broth, quercetin, Chinese skullcap. I am already able to take entire droppers of any of these without my symptoms worsening, ie, herxing. I have heard a lot of talk about how hard it is to get up to proper dosages... A bit scared that I'm not necessarily herxing at all.

Last week I got an incredibly high mycotoxin lab back from Great Plains Laboratory. My Ochratoxin A, on a range of 0 to 20, with 4 being "we should treat this " and 20 being "this is severe", was an astounding 80. My LLMD has put me on CSM and activated charcoal.

I am constantly suicidal because if the visual issues and primarily the tinnitus. I am having trouble finding success stories. I hope to hell my issues are being caused by Lyme or the mold, since it gives me some hope to live and fix it.

Has anyone treated such a high level of OTA and Lyme? Did it resolve your visual issues, and tinnitus? Is being able to take 60 to 100 drops of Buhner herbs without going catatonic a bad indication in barking up the wrong tree, even with a very positive Lyme diagnosis (which was backed up by a test at Armin Labs). Most success stories seem to be about fatigue and pain... I don't have much of that...

Hi Lasek - welcome!

I haven’t treated for mold - but currently treating lyme and coinfections.
I’m also Canadian... on the West coast.

I also have (or had) tinnitus (pulsatile not the ringing), twitches, but not the vision/eye issues.

I also can take full droppers of the Buhners herbs. I’m currently taking Cryptolepis with my abx.
I am taking two dropperfuls a day.
I dropper = 25-30 drops = 1/4 tsp.
I may add in a third dose.

Prior to starting antibiotics - I did Buhners herbs for lyme - and ramped up quite quickly.

You don’t have to herx in order to improve and get better...
I hear this more with herbals than with abx
You’ve only been taking them a couple of weeks - you may herx as time goes on.

Everyone’s symptom package is different - and YES you can get better!

Are you going across the border to see a LLMD?

Members with mold treatment experience will be on to answer your questions.

I’m sorry that you are suffering so much - and hope you get some relief with the tinnitus and eye symptoms.

Hey Lasek, reading about your visual problems and tinnitus reminded me of my own symptoms when I first got sick. You probably have bad headaches too, and eye pain.
For me these were all caused by mold, and I also tested positive for ochratoxin A. However I didn't do the mycotoxin test until after about 7 or 8 months of heavy detox protocol in place, I was taking zeolite, chlorella, went to sauna 2 or three times a week, took epsom salt baths, ate a lot of veggies, greens, a smothie every morning etc etc. And then finally realized what i was dealing with was mold toxicity, so my ochratoxin A was "only" 20 at the time, but if I tested initially when I got sick God knows how much it would be, and what other mycotoxins would be present.

Are you doing any detoxing?
Did you leave the moldy environment? This is absolutely essential.
Your symptoms can resolve with detoxing. The best binder for ochratoxin is cholestyramine. It is very potent, you have to go really slow. Perhaps you could try other modalities of detoxing that are available to you, like sauna or activated charcoal, cholestyramine is a prescription drug, you need to talk to your llnd about it.
I am not completely symptom free, it takes time, but I have certainly improved a lot.

Sandyfeet - My test was an IFA - that was in 2014.
I wonder if they offer more than one ?

It was negative so WB wasn’t done.

LASEK,

What is CSM?

Zimica said...
Hey Lasek, reading about your visual problems and tinnitus reminded me of my own symptoms when I first got sick. You probably have bad headaches too, and eye pain.
For me these were all caused by mold, and I also tested positive for ochratoxin A. However I didn't do the mycotoxin test until after about 7 or 8 months of heavy detox protocol in place, I was taking zeolite, chlorella, went to sauna 2 or three times a week, took epsom salt baths, ate a lot of veggies, greens, a smothie every morning etc etc. And then finally realized what i was dealing with was mold toxicity, so my ochratoxin A was "only" 20 at the time, but if I tested initially when I got sick God knows how much it would be, and what other mycotoxins would be present.

Are you doing any detoxing?
Did you leave the moldy environment? This is absolutely essential.
Your symptoms can resolve with detoxing. The best binder for ochratoxin is cholestyramine. It is very potent, you have to go really slow. Perhaps you could try other modalities of detoxing that are available to you, like sauna or activated charcoal, cholestyramine is a prescription drug, you need to talk to your llnd about it.
I am not completely symptom free, it takes time, but I have certainly improved a lot.

Thank you for for your response! I am using activated charcoal and cholysteramine to detox, as well as Epsom salt baths. I'm going to start hitting the sauna multiple times a week as well now. Your story is inspiring for me, I'm happy to hear you're recovering!

WalkingbyFaith said...

Lasek said...
Has anyone treated such a high level of OTA and Lyme? Did it resolve your visual issues, and tinnitus? Is being able to take 60 to 100 drops of Buhner herbs without going catatonic a bad indication in barking up the wrong tree, even with a very positive Lyme diagnosis (which was backed up by a test at Armin Labs). Most success stories seem to be about fatigue and pain... I don't have much of that...

Lasek,

Welcome. I’m on my way to an appointment so I will be brief and blunt. Those who don’t believe mold is an issue for them and are wholly Lyme oriented may disagree with me, but here is my honest opinion as one who has CIRS from mold and Lyme/coinfections.

I have not seen that high a level of mycotoxins. I tested with Realtime Labs and am planning to get retested with Great Plains.

My visual issues improved after getting out of my moldy house and workplace and detoxing. Has gotten worse again with additional mold exposure and when I am herxing (fluctuates). I rarely get tinnitus but recently had it when I absentmindedly walked into my moldy house with my HAZMAT suit hood off and didn’t realize it until my ears started ringing. I touched my head, realized I was exposed, and got outside to properly suit up. I did not realize until then that mold/mycotoxins could cause tinnitus.

Your complete lack of response to herbs (and I assume the minocycline) is very telling IMO. Having a positive Lyme test result does not necessarily mean that borrelia is the cause of your symptoms. I would advise NOT treating with abx. Herbs can be helpful for many things, especially the immune system. I don’t see any harm in those if you choose to. However, I would focus wholeheartedly on identifying where you were exposed to mold and getting away from that environment. Focus on the mold not the Lyme. If you can be successful in avoiding mold exposure (including contaminated possessions) and detoxing mold, you may find your symptoms disappear.

Learn all you can about mold. There are numerous posts here on the subject with links to other sites.

Thank you for the response. It's enlightening to hear your story. I am actively working on a detox plan now, since mold is the one thing I have confirmed to be in excess. I have moved from the moldy building already and hope that will be enough, but will mold test all my possessions and current living quarters as well