Gastro Lyme

I am interested in hearing if anyone here has had gastro lyme. My story is that I was diagnosed with Lyme 6/2012, however for 1.5 years I suffered with a mysterious gastro illness that was never diagnosed. No, sorry, my gastro doc said it was post-infectionary IBS, which doesn't make sense. That began in mid 2009 and to this day my stomach is not the same. Then suddenly POW! Lyme. Huh? I am a pretty healthy person, I believe I have lyme and have been to a Lyme Specialist. The symptoms that brought me to my doc I attributed to either stress, hypoglycemia, menopause etc so my wonderful doc (love her!!) tested me for all that and threw in a Lyme test....surprise, surprise I have Lyme! Like others I have various odd symptoms and I would notice wierd stuff like my feet falling asleep while on the eliptical, having to take deep breaths when going to sleep, not sleeping well, heart palps, the bottom of my feet hurt (yes, being treated for co-infections). Anyway...similar stuff as others, I am just thankful my gp was smart enough to run the test and ignore the negative result, look deeper and see the bands that were reactive were specific to lyme (23, 41).

I am fascinated with the disease, although at times I think I am just making it up, feel fortunate I have the doc I have but was really interested to hear what kind of stomach issues others have that are attributed to Lyme. My stomach has been no worse with the antibiotics, have been taking probiotics.

 

thanks for the feedback. Yea, I feel very fortunate to have the GP I have! Also am cofident with the Lyme Specialist.

Since I initially started with just Doxycylone prior to seeing the specialist, I notice my hair and nails were growing faster. I also noticed the little paper cut-like things under my nails healed. I believe it is because I was not absorbing nutrients.

How did you know you "turned the corner"? It is weird, I have moments when I am like, gee, I just feel better. Still tired, feet still hurt, haven't had terrible herxing though.

I've had stomach problems for over a decade, and my symptoms seemed to start right around the time I got infected (though I didn't know it yet) - diagnosed as IBS, treated with some antidepressants but being so young (a mere 12 years old!) that sent me down a much more unpleasant path...

I have heard that bartonella is often the culprit in lyme disease patients with a lot of gastric problems - with the burning feet, I'm guessing that's one of the co-infections you're being treated for?

Just from personal experience, I'll suggest a trial of abstaining from dairy. I found that my IBS symptoms completely - and unexpectedly - disappeared while I was experimenting with vegan and paleo diets. Not eating meat or processed foods is a bit of a challenge for me, but honestly not eating dairy isn't much of a struggle - might be worth a try. I'd had such terrible stomach problems for so long, and in retrospect I can't believe no one ever put 2 and 2 together - dairy was always involved!

Also, there's an ayurvedic herbal supplement called Trifal (you can order it online) - my doc put me on it from the beginning of my treatment and it's been very helpful - not particularly expensive so it might be worth a try.

I've had most all the symptoms in my gut listed in the "Bell's Palsy of the Gut" article:

http://thehumansideoflyme.net/viewarticle.php?aid=62

Treatment of the infection has helped me some. The most help I've seen is relief from the obstinate constipation. But I hadn't been treated for Bart. when the constipation cleared up, and still really am not being treated (just on a low dose of Cipro) for Bart. And I know Bart. is responsible for a lot of the gut motility issues many with Lyme/Co's have.

Dairy....yea, not good. I am trying to eat a high alkaline diet. Not being too strict though, it is enough keeping track of the pills, can't deal with too much other stuff, but keeping in mind dairy not a good idea. Cut down on coffee : (, no alcohol :: (( and no ice cream ::: ((( !!! Got some almond milk....its good.

WR, you had the GI syptoms before starting on meds? What is interesting with me is that my stomach symptoms have gotten no worse on meds. I do take the aciphophlis and biddfus (spelling?) which has helped. I still have burning in my stomach that no meds help. Is that what you had. I lost 15 lbs from it. I have gained it all back, plus some which I am not happy about!

I am not on a strick alkaline diet....I just can't do it. I try to think of my list of high alkaline foods and incorporate, like almonds, bananas, lemon water, etc. I know me and it I find it too stessful to take on too much. I am staying away from dairy, sugars and alcohol (which I should have all along anyway given my tummy, but you know you have those stessful times, and the one vodka and tonic just takes off the edge.....). Luckily life has calmed down for me : )

Besides the meds, arithromycin, doxycyclone, and Medpron, my doc put me on the probiotics, fish oil (4000 mgs/day) and NAC 900. I actually feel better, my stomach is something I just feel like is going to be what it is.

How did you find out you had bleeding erosions? Also we know what stress does to the stomach, I have always had a "nervous stomach". Hope things have leveled off in your life.

Good info about the banana, thanks. I have have heard of ginger and tried it, didn't do anything. I think I may try again the Aloe Juice, that seemed to help. Part of me thinks though I shouldn't mucky things up, that's when my head starts reeling!!! I did everything during my gastro time, including acupuncture with a naturopath.

My GI guy, who I fired, said just eat, rest and relax. I was like easy for you to say!

I actually feel more confident that I am on the right track with the lyme. Very different experience than when I had my gastro thing.

I have been struggling with tummy issues now since March. They came on pretty suddenly after swithing my ABX to Flaygl and then getting acid reflux. I went off all my ABX in March. I am feeling a little better however, my tummy is still giving me issues with bloating/trapped gas (and when this happens, I think it pushes all my organs up and causes discomfort in my chest). Anyhow, I am kind of wondering if I have a imbalance in gut flora from the year I spent on ABX.. I've been testing different things with probiotics and just added back in Florastor a few weeks ago and it seems to be helping. Florastor is a type of yeast that pushes out the bad yeast from what I understand...or something like that.

So yes...I'm dealing with GI issues as well. When my symptoms very first started, I had the bottom of the feet thing hurting REALLY bad. It lasted for a couple of weeks and then went away. This was in addition to the sudden onset of all my other symptoms. I told my LLMD that about this and he tested me for bartonella through Igenex but it came back negative. I did test highly positive for erlichosis.

I did not know that bartonella was associated with GI issues, so now I believe even more that I do in-fact have that too.

Also, I did not know that bananas caused inflammation. I am now taking 9 Advil's a day because I have inflammation in a tooth (I broke on after falling and had to have a second root canal done last week on it). I eat one banana a day...maybe I should stop for a week or so...

All interesting stuff!!

How do you know if you have "inflammation" in your tummy?

Gastro;

Can't eat anything except rice and quinoa without passing out from the pain. No gastro tests ever had anything turn up.

Guess who now has a mega case of Lyme. I'm 19.