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» LymeNet Flash » Questions and Discussion » Medical Questions » Still off...wonder what's going on. New info.

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Author Topic: Still off...wonder what's going on. New info.
bcb1200
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Well folks.

The flare that started in September is still going on.

For those of you who don't know me I've been around for 8 years. Was diagnosed in May 2010 after 6 months of weird illnesses. Igenex was CDC positive on IgM, later tested positive on Quest western blot. Had indeterminate Bart and Babs Duncani results.

Made great progress initially going from bedbound to 80-90% in 6-8 weeks on Doxy/Flagyl. Most symptoms resolved but was left with mild twitching, mild tinnitus, floaters, and mild night sweats.

Clearing the remaining symptoms has been a huge challenge. I've gone after Bart with heavy abx/herbs and still have symptoms. I've gone after Babs with heavy babs drugs and herbs and still the same. I've had some nasty herxes along the way, but my symptoms persist and I seem stuck at 85-90% most days.

My current LLMD kept me off antibiotics in 2013 and I had an amazing 2013 and 2014. 95% and nearly recovered. But things started back sliding in 2015 and I had a relapse of sorts in late 2015. We still arent' sure why.

I spent most of 2016 clawing my way back out. I went the alternative route with a good Applied Kinesiologist in NYC who really helped. But I still had weird, new symptoms from early 2016 that mostly invovled my head and neck. Specifically a woozy/spacey feeling, worse floaters, worse tinnitus, post nasal drip, pressure sensations on top of head. Hot flashes. Sometimes all of this is worse after eating.

Things changed for the better in Feb 2017 when I started MC-Bab-2 and Liposomal Artemisinin. For the first time things got better. And I've been essentially on that ever since, ramping up slowly over the past 20 months. Overall I've felt pretty good with long stretches of 90-95% again during that time. When I did have flares, they were rather mild and I could get them to stop by backing down on drops.

But then in September I started getting my "problematic" symptoms from 2016 again. Only this time they don't go away if I back down on my drops.

I worry It's a relapse, or if it is Babesia then I'm somehow become resistant.

Still...the logical side of me says this is another layer. Perhaps we are finding out what is missing.

My LLMD did some tests recently and I've found out that I am quite positive for Mycotoxins in my urine. VERY positive. I've got almost 7x the amount of Ocratoxins in my urine and 12x the amount of Gliotoxins. This isn't the first mycotoxin test I've taken. I had one 2 years ago, but my results now are worse.

So...I think I have a mold issue I need to deal with. I'm pretty sure my house is ok as I've had it tested and remediated before moving in. But this could be an old exposure, or I could have colonization.

So...mold could be causing my issues now. My only question is WHY NOW? It's been in the mix for a while. Why the flare up all of a sudden?

The other thing is it seems I have some Gut Dysbiosis. Likely from years of abx. I had a stool test done recently and it shows high levels of pseudomonas spp, streptococcus spp, etc, in my gut. I also have high IgA antibiodies to Yersinia Enterocolitica.

So...not sure what to do next. I worry the flare it bart or babs rearing their ugly heads. But maybe it's neither and it is all mold. Or maybe it is bart and babs, but I've got to deal with mold to get those coinfections permanently under control. Either way, it's not a good thing that I've got mycotoxins so high in my system.

So that's what's up. Not sure why I'm putting this on Lymenet. Traffic here seems to be down a lot versus 8 years ago. But I do like the friends I've made here and do use this site as a blog of sorts to document my 8 year odyssey. I often go back and read posts like this from my from years back to understand how I felt when.

I'll keep plugging away.

One thing I can recommend is please do NOT underestimate mold. I know a few stories of folks who had symptoms they swore were lyme and co and it was really mold. And once that was treated they were finally well. Here is a similar story: https://www.gordonmedical.com/a-fng-part-two-chronic-mold-infections-and-lyme-disease/

Be well!

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
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Could you have possibly had a water leak and not know about it? I would get another mold test done on my house.

Also, you could have gotten a new bite and not know it.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
bcb1200
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No new bite. I'm sure of that.

I'm pretty sure I've got no leaks. We have a new roof, new siding, etc. Our basement is bone dry. We run dehumidifiers. I don't think it's my house but I'm checking.

My office has a history of mold but has been remediated.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Thanks for the warning about mold. A lot of people post about the dangers of mold. It's just with all the other things on our plates, we seem to take mold seriously last unfortunately.

You stated all your problematic symptoms came back in September. Outside mold allergies are HUGE in September. But also are viruses. I always relapse in Fall and this year was no exception. I am STILL in relapse going on 3 months now. I am very sick and still searching for answers.

May I suggest you get tested for EVB, HV, TB, M Pneumoniae, C Pneumoniae. You might have active infections going on.

I got most of your symptoms and my levels are high. I asked to be tested also for brucellosis and I had detectable levels but not positive. Sort of like being alittle bit pregnant. Mycroplasmas can make you very ill. I now have mono and spend 20 hours in bed. Worst relapse to date.

Keep searching for answers if the answers you are getting don't make sense. I feel your pain. Stay in battle. Time heals.

Posts: 2150 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Specifically a woozy/spacey feeling, worse floaters, worse tinnitus, post nasal drip, pressure sensations on top of head. Hot flashes. Sometimes all of this is worse after eating.

Take a look at a list of salicylates .. could be a mix of that and the mast cell problem you mentioned once before. Perhaps mold is in the mix. I think for me, it's from past exposure .. during the time I was treated for Lyme.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94840 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
map1131
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Anybody that does abx for any length of time is going to have mold, fungus, candida in their body.

Could you have a mold issue in your home? Yes, and be sure to check this carefully.

But everyone is exposed to mold/fungus/candida and during our long periods of immune suppression is when our bodies begins to lose the fight against it.

Now focus on how you want to eliminate it in your body. Patience is needed during this process. It doesn't happen easily.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6405 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
bcb1200
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I'm pretty sure my house is ok. We moved into the house in Jan 2017 and did extensive remediation before hand, as well as clean every room extensively.

My ERMI's are still "too high" but we did swab, culture, and other tests before moving in which all were great.

Not saying maybe I don't have a new leak. I could, but it may not be my house.

Dr. N says that many times the toxicity can come from exposures years earlier and then the mold can "colonize" the sinuses and gut and cause more issues. This can happen particularly if you've got Lyme/Bart/Babs and are on abx.

I was exposed to a lot of mold back in 2015 when I was on abx. So think that is likely my issue.

Either way..my mycotoxin load is FAR TOO HIGH and I need to lower it.

Robin..I think I've got some Mast Cell Activation going on. Dr N says it's typically the cause when patients feel worse shortly after eating. And also the MACS is caused by Mold and/or Bart in his experience.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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It sounds like you have your answer with the high test results. I hope you find a toxin treatment protocol that works for you. Sorry you're still feeling bad.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Told you I was sick
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bcb,

I sent you a PM weeks back re: a different post of yours.

You are on the right track.

Let me know if I can recommend some providers for you to see re: these issues.

Hopefully you make progress soon...
Told

Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Robin123
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Starting with just some simple comments -

Mild twitching could indicate need for magnesium.

Mild tinnitus indicates irritated nerves - the only tx that ever worked for that for me was use of a PEMF machine.

Floaters - I drink mangosteen juice everyday to stop all Lyme eye symptoms - get it at the health food store.

Mild night sweats could be babesia still.

Posts: 13012 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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You probably know about Environmental Medicine specialist. Dr. Lisa Nagy, in MA. I thought she was treating you, but when I read one of your other posts you mentioned a different doctor with the same last initial.

She did not have Lyme, but MCS (=Multiple Chemical Sensitivity), and is a mold expert.

Here is her website:

https://lisanagy.com/

Posts: 8753 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
bcb1200
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Well, just got some bloodwork results and Vitamin D is VERY low. 29. Normal is over 30 but LLMD likes it over 40.

Not sure if this is what is causing my issues. But it isn't helping, that's for sure.

Starting D3/K2 supplements today.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
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Well, turns out most of my adrenal hormones are screwed too. That could be part of the problem DHEA, etc, is all very low. Hmmm....

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Brussels
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Esmog affect most hormones too.

I gave up NOT supplementing D3 in winter.

I take it almost every day for the last 10 years specially in winter.

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
   

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