First of all, I want to thank everyone who responded to my previous posts about my bad experience with the doxy, and how I ended up in the ER dehydrated.
I was in pretty bad shape, and just never was able to get back to the computer!
But here is my issue now:
I had been having "gut" problems before I started the doxy.
I had been having abdominal distention (to the point of looking pregnant!) and having issues with being able to tolerate foods.
At this point (late April) I did see my LLMD for a check up and to go over this problem, and he examined my abdomen and didn't seem overly concerned.
He didn't feel any masses, and nothing was painful to his touch.
So he sent me home on the doxy.
I was not worried, because I had taken it before with him, and had no real bad effects other than the skin burns (and we stopped it in the summer for that reason).
Anyway, then came the wretched abdominal pain, fever, nausea, vomiting, diarrhea, and eventual end up in the ER.
The ER doc also didnt seem overly concerned after his examination (he didn't feel anything abnormal either), and so they gave me IV fluids and some meds for nausea and the diarrhea.
My labs were normal, no heart, kidney, liver, or pancreas issues. No C-diff.
So they were not exactly sure whether it was the doxy, or if it was a GI problem of some other kind.
BUT HERE'S WHERE I AM NOW, and am wondering if anyone else has this condition:
"Post-Lyme IBS" or "Post-Lyme IBD"
Symptom-wise, I am happy that the fever, nausea, diarrhea, etc is gone and I am able to eat certain foods.
But my abdomen is still distended, and at times it feels like stabbing pains in there, as well as the painful feeling of gas moving around.
My abdominal muscles hurt too.
I am basically sitting with a heating pad on my belly at times, and my family dr suggested gabapentin for the pain (he said it sounded like the nerves in my abdomen are overly active).
It does help, as well as trying to move around as much as possible.
What they docs can't seem to agree on is what exactly happened, but they do feel that my gut is now inflamed and overly sensitive.
Since I have Chronic Lyme, one doc mentioned the "Post-Lyme IBS or IBD" or possible "Post-Infectious IBS".
Does anyone else have anything like this?
Posted by Razzle (Member # 30398) on :
Sounds more likely to be Candida or other variety of intestinal dysbiosis (SBBO, also called SIBO)...
I assume you were taking probiotics during your time on Doxy?
Most regular MD's & many Gastroenterologists are completely clueless when it comes to Candida or Small Bowel Bacterial Overgrowth...
Might also be parasites...
Posted by Keebler (Member # 12673) on :
- There is no such thing as "Post Lyme Syndrome" or "Post-Lyme IBS etc. Any doctor who uses that term, discounts the ability of the borrelia to persist beyond a short time. And they are very wrong about that.
While those with lyme who do reach a good solid remission can have some lingering pain or disability, that is very different from symptoms that have not been resolved due to active - but chronic - infection that still needs to be addressed.
- it's a key phrase the IDSA has developed for those who have issues related to chronic lyme. It's their "umbrella" or "garbage can" to toss out those with lyme. It's a lazy-*** way for them to also get out of actually having to think about what else could be going on.
I would never want to see any doctor who puts me into any kind of trash can diagnosis. They are not doing their job and are ill-equipped to be a proper doctor in such a case.
However, as with many symptoms that lyme & co. bring, it could be lyme -- &/or other things. Likely, it's many factors and each needs to be addressed.
Firt thing to consider with any gut trouble, especially IBS: GLUTEN.
A gluten-free diet is very important to do for a few months to see if there is a connection.
A genetic celiac test could help but gluten is still usually a huge problem for those with lyme.
"Leaky Gut" can be caused by gluten, by various infections (including lyme), certain foods, some Rx, too. So if Rx is irritating gut, talk to your LLMD. A LL ND may have suggestions such a slippery elm, marshmallow root, DGL, . . .
Consider H. Pylori infection, too, and be sure anti-Candida measures are good.
Carbonation is to be avoided. Surely, you already avoid all food and beverage additives (I hope) but also be sure to avoid all carbonation, even fizzy water. It can eat the lining of the gut, so to speak.
[ 05-18-2013, 02:47 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Talk to your LLMD about this and ask who they suggest to help: Rx treatment can be very effective. It's a combination of specific Rx together. In addition:
Be sure to get off dairy.
Posted by FlyingBurritoSister (Member # 40397) on :
Gee, thanks everyone! I am sitting here wondering exactly what I CAN eat!!!! Yes -- the chicken / turkey / water / lettuce is just about sad enough!!!
To update, I had a CT scan yesterday, and on the good end, there was nothing like a mass or anything like that.
On the bad end, it showed that my ENTIRE COLON is inflamed!!!
Then they did a celiac test on me, still waiting for that result.
Now this doctor who went over the report with me (I go to a clinic, as I have no insurance) is not exactly Lyme-literate, but he did say "With your Lyme, I cannot give you prednisone, which is what I would do in a case like this".
He recommended a gluten-free diet and suggested that I continue the gabapentin since it takes the edge off of the pain.
He did mention that I could have had Lyme-related gut disease before I even took the doxy, and the doxy just kind of made things worse.
He also mentioned "leaky gut" but not Candida.
In the meantime I guess it wouldn't hurt to try a diet of foods that might be similar in treating Candida and gluten free?
Posted by lpkayak (Member # 5230) on :
actually its kind of amazing a clinic doc knew not to give you steroid and said the words "leaky gut"
i have kept my ibs undercontrol for over 20 yrs with high fiber, whole foods.
but inflamed might mean colitis...and that is different.
also-i'm just gonna say this because it is true-i have had good LL docs tell me it is ok to take a short course of steroid for life threateing things. i have done it for asthma and i almost did it for gi but got thru crisis with ut it
also-when bells palsy comes on fast doxy(30 days) and prednisone(6 days ) has reversed it for a friend with lyme
and entire inflammed colon is serious-be careful
Posted by Razzle (Member # 30398) on :
Yeah - go for the candida/gluten-free diet. And there are some herbs and other things you can do to help with colon inflammation.
Coconut and coconut oil is super good for inflammation in the colon, because it contains the short-chain fatty acids that help nourish and heal the colon.
As an added bonus, coconut oil also contains a substance that helps fight candida.
And if you aren't already, I really do suggest a good quality probiotic.
Clinical studies done on people with Ulcerative Colitis (an "autoimmune" colon inflammation) show the specific probiotic used in the study to be as effective as one of the most commonly prescribed medications for Ulcerative Colitis.
Also, consider eating as much organic, non-GMO as you possibly can. There are so many chemicals in non-organic foods, plus the GMO's (genetically modified organisms) are known to cause a lot of problems (in animal studies).
Buying organic is the only way right now to be sure you aren't getting GMO's...and it will remain the only way to know until we get some GMO labeling laws put in place.
Posted by Lymetoo (Member # 743) on :
And it doesn't matter if your celiac test comes back negative, you will likely benefit from a gluten free diet. Be very strict with it or you won't benefit.
No sugar either!! Eat vegetables.
Posted by Lilylooloo (Member # 30859) on :
Consider the GAPS diet for serious gut healing. PM me if you want details.
Posted by Lymetoo (Member # 743) on :
GAPS .. and/or Body Ecology Diet
Posted by FlyingBurritoSister (Member # 40397) on :
Thanks again for all of your replies, everybody!
My latest update is that the Celiac test was negative. I asked about the false negative rate with it, and the doc said that he trusted my result.
In any case, I am using the gluten-free diet, and probiotics called Jarrodophilus (someone said that they were a good brand; I can no longer tolerate drinking Kefir).
Coconut and coconut oil sounds like a good option to add.
The doc also recommended that I stay on OTC Prilosec for another 2 weeks for a full 5 weeks, and then we'll see if I should discontinue it.
We are also now weaning me off the gabapentin.
So the current diagnosis is that I have a form of ulcerative colitis that was made worse by the doxy, WITH probably a GI infection that was on top of it.
Good news is, I am noticing slow improvement, not as much pain, some of the distention is going down.