Hi hollsya -
I agree w/ Girlie's post - a lot of good info.
Your post resonated with me because I started my Lyme journey with severe GI issues, as you're describing. I think this is caused by several things, and/or a sequence of events--exacerbated by or can exacerbate a Lyme infection. Your GI usually doesn't get this dysfunctional by a single means, alone. Just like it takes several different protocols to heal it.
Like you, I believe I was infected w/ Lyme & Co about
20 yrs ago. I lived, worked and traveled in the NE throughout endemic areas (yet NO Md bothered to check me). One of my first sx was GI trouble. All MDs I saw blamed me - my diet, my schedule, my stress, lack of sleep, too active, etc...
70% of your immune system is in your GI so my immune system also started to act up, my hormones went a little crazy, thyroid and neurotransmitters, endocrine function all became disrupted - they all interact w/ GI function. Looking back, I was a clear picture. But you'd never know it unless you are educated about
Lyme & Co and associated sx.
Eventually, I recovered very well, was running again, felt great.
Jump forward a decade and I suffered a bout of food poisoning, and hit bottom again. I was on liquid food for a year before I started working w/ a naturopath and we made a little progress w/ my GI, proper thyroid testing/supplementation but neurotransmitter function got much worse. I didn't know anything about
the Lyme & Co at that point.
I recovered a bit, and 5 yrs later crashed again and ended up fighting chronic sinusitis and bronchitis for 13 months. I saw 8-9 different MDs who cycled me through various abx courses, which only made the sinusitis/bronchitis worse, my GI worse, AND stirred up various Lyme-Co sx that were so specific that I was finally able to suspect Lyme & Co. And once I started on antifungals, the sinusitis and bronchitis cleared up instantly. So did some of my GI issues.
So I started working w/ an LLMD and the first two things we did was to focus on GI healing and reduced viral load. We also boosted immune function a little bit, which helped me test positive on IGeneX (ELISA was negative).
Regarding your GI - here are a few "explorations" that could possible provide valuable feedback so that you can start to peel back some layers to address your GI issues and root causes:
- You might stop the probiotics and evaluate if you have any changes. For some people like us, we can create more imbalance w/ probiotics - they have never worked for me. I think they're helpful to many w/ a normal GI function but something created severe imbalance in your GI flora, and no probiotic product is varied enough to rebalance.
- You could also still have yeast/fungal overgrowth simply from the abx. You mention you've been on various antifungals - can you list them? Like abx, there are specific antifungals for specific strains. Every one of the sx you listed are common from y/f (altho they could certainly be from other issues or a combination of issues.)
There is a lot more info about
y/f and GI issues in this thread - please read through it and and ask any q's - we might be able to target your issues more specifically.
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275 - An allergist... most MDs... even gastroenterologists... often are clueless about
how foods impact our GI function. It's mind-boggling but I'll save my rant for another time. I'm not sure if this is what you're experiencing but including a comment here for others who may be reading - leaky gut is caused by damage to the mucosal lining of our GI, which can allow fecal matter, toxins, etc to seep through the damage and enter the blood stream.
When the immune system finds food particles and other toxins where they shouldn't be, it reacts and this often causes the food sensitivities or allergies. This should create IgG and IgM reactions but I really don't know what kind of tests these MDs are doing. Anyway, this is what creates the need for specific diets for people, which helps reduce sx but can also increase flora imbalance. Frustrating.
Leaky gut
www.thefooddoc.com/diagnoses/leaky_gutwww.healingwell.com/community/default.aspx?f=30&m=3294327 - And your GI issues can also be caused by Lyme & Co infection in the gut or issues with other health systems that coordinate w/ the GI (and there are many). Once one system gets out-of-whack, they all seem to struggle. There is a condition called Bell's Palsy of the Gut, which can cause digestive dysfunction. I think I also had this challenge with my GI - you might look into it as well.
Bell's Palsy of the Gut
www.lymenet.de/literatur/vtsherr_gut.htmI realized I had an infectious issue in my gut when I would suffer these horribly severe GI attacks that landed me in the ER. It took two years to figure this out but the attacks started after I cycled through those abx for the sinusitis/bronchitis - some of the abx were the same abx used to treat Lyme & co, including Levocloxacin, which is used for Bart. Then the attacks stopped. Then they resumed after taking an herbal tincture A-Bart for bartonella and stopped after I stopped the A-bart. Then resumed when I started a different bart herb...
I finally made progress w/ the attacks after going on IV vancomycin for bart... Lots of other progress for bart sx, as well.
The "several MDs who suggested Lyme doesn't affect GI" aren't even the least informed about
Lyme and how it manifests, although they would probably be in the majority. This is why you need to find a specialist.
Regarding treatment - MANY people have healed after going a long time w/out diagnosis or treatment and you can find some of these stories here on the forum. Going so long w/out tx certainly complicates healing, but it can be done.
But like others treating a chronic case, you will likely need to explore various treatment modalities to best respond to your unique condition - what is going on with your health (your GI issues, in particular) and whatever infections you may have will determine how you respond to treatment and what kind will be more beneficial and what other support you need. And this can also change over time...
While you're finding a new LLMD partner, which could take some time, I think you'll benefit from healing gut a bit. And we can talk more about
that. Then you'll want to establish a good detox protocol, which can take some time to build - a lot of info here on the forum about
detoxing. And for you, this also should include gut detox.
When you've made some progress w/ GI, then I think you should try some herbal antimicrobial tinctures and ease into treatment a bit. You can purchase these online, we can help you determine which ones to try and help you work through your reactions to them and minimize herxing.
And of course, if you feel you've already exhausted these GI healing modalities, then maybe it is good to start an antimicrobial approach but slowly and only when you have good detoxing and support in place.
There are other things you might want to do to help prepare for an LLMD appt w/ a new specialist and we can help you with them as well.
As Girlie mentioned, a bulls-eye rash is generally understood, even in the strictest interpretation of diagnostics for Lyme, as being produced by only a Borrelia infection, or Lyme. So it's one of the symptoms that doesn't require testing, although some MDs or insurance co's might still require it. The "New to Lyme?" thread Girlie mentioned has a lot more info about
which tests to use and how to use them and interpret them.
Hope this is helpful - if not just keep asking questions!
-p