Lyme or something else?

I know it is hard but waiting for the Igenex is best.

I had nausea, diarrhea, constipation and vibrating intestines with lyme. If there is a weird symptom to get, lyme will give it to you. I felt like someone hit me hard in the arm. I felt like I had an ice pick in my head. Oh gosh then there was glass in my feet. No, it wasn't there, but I spent a half an hour with a magnifying glass looking. It got so it was a joke in my house because I would just say, "another symptom."

Lyme seems to go for our weak spots and if your tummy is a weak spot that is where it will land. I obviously have a weak lymph system in my head.

I am so sorry I don't have a plan for you but waiting for the results of the Igenex test is best.

What to do until it gets here????? Well, it is time to start taking really good care of yourself. No junk food, super limit your sugar intake. Eat as healthy as you can afford. Learn about detoxing. Detoxing isn't just for lyme people, it is for everyone. We are in contact with toxins every single day and we need to help our bodies get rid of them. That is detoxing.

Simple good liver and kidney detox is lemon water. Just a splash of organic lemon juice in a glass of good water. This should become your go-to drink. There are a lot more ways to detox. Check this out. www.tiredoflyme.com/detox-methods.html

You might want to read the first thread entitled "New To Lyme? .... Start Here!" Full of information.

And one more thing, lyme loves you to be stressed. Find a way to stay stress free. I had to learn to say "no." I was always the one to be on a committee, help babysitting, lend a hand with moving, etc. In order to get well I had to start thinking of my health as number one priority. It was hard for me. I hope you have better luck.

This community is full of well educated and informed people, so ask those questions any time. Make sure you let us know your test results. Lots of good caring people here that can direct you.

Hugs of comfort.

Hi Collagelymie -

I feel your pain. Literally.

I think PeteZa shared really important info to help you find information and learn more about lyme. For many of us, it's the learning process about lyme and coinfections that are critical in helping us understand the possibilities and what to communicate to lyme specialists in order to get an accurate diagnosis. The better we understand lyme & coinfections, the better we are able to organize and communicate specific and relevant info to our LLMD and the more successful you'll be in reaching a diagnosis and successful treatment... it's a whole process and you're on the right track.

OK - regarding the nausea. Reading more of your background really rang a couple bells with me. First, I also had the "stomach flap" issue as a baby. I would projectile vomit too but what clued my mom in more than anything was that I wouldn't burp. In a few weeks the flap finished growing in and all was well. It's called pyloric stenosis. Now, it's not at all uncommon and I haven't done a ton of research but like you, I have suspected that it has contributed to GI issues that I've had my entire life.

I also learned through DNA testing that I was born with a low level of good gut bacteria - hereditary... and I've always suspected this has something to do with the GI issues that developed.

Like you are now, I was constantly nauseated as a child. I hated food - rarely ate. When I did it was always the same foods because, well, I hated food. I didn't grow out of this until my 20s and eventually the nausea subsided.

I'm pretty sure I contracted the lyme, bart and babesia (and what else?) about 18 yrs ago. I didn't develop GI issues until about 10 yrs ago, either the bart moved into the GI (LLMD and I dx it as "palsy of the gut") and/or I also contracted some bacteria or ingested it--maybe food poisoning. From that point on, my GI has been a mess. Never-ending food sensitivities, trouble digesting, I oscillate between diarrhea and constipation regularly but my biggest beef has been the feeling that my upper GI and many times my entire torso has been in a pulsating vice. On a daily basis this is fairly benign and I have so many other dominant sx that I just manage.

But every 4-5 wks after going to bed the pulsing cramping gets really bad... I mean - crawling on the floor can't even get to my phone to call 9-11 bad, I pass out on the bathroom floor as I'm dry heaving. After HOURS of this I finally projectile vomit whatever is in my stomach -- a few times and then I'm done. Episode is over, I crawl back to bed, pass out and sleep for a day from exhaustion. But the cramping is mostly gone for awhile.

After about 2 yrs of these episodes in context w/ my lyme & co treatment, I was finally able to tie the episodes to the Byron White A-Bart herbal tincture I was taking for the bartonella. When I'm on it, the episodes occur, but not when I'm off it. Since I can't tolerate it, my LLMD thought we'd try vancomycin since I'm already on IV Rocephin for lyme. I FELT IMMEDIATE GI RELIEF FOR THE FIRST TIME IN 8 YRS WITH THE FIRST DOSE OF VANCOMYCIN. It's a "last resort" powerful antibiotic so I won't be on it for much longer but it has hit whatever has been slowly killing me from the inside. Only time will tell if it will be a permanent fix but I'm soon going to start the A-Bart again so that I can transition to it more long-term.

So, when I read your post that the only time you've had normal BMs (and one could say that indicates normal GI function) was while taking abx, I wanted to share my experience. I would find a good gastroenterologist--preferably one who embraces integrated care--and investigate possibilities of a bacterial or parasitic issues.

As is so often the case w/ us "lymies" our symptoms are very complex and there are usually many, many things going on simultaneously. The lyme and coinfections can cause many body system malfunctions. One approach is to address the tick infections that are causing the disruption, but often we also have to understand and address the impact of the disruption. So, we end up treating for lyme & co as we are also trying to repair the damage the infections create. So regardless of your lyme status, give your history and current issues you might also benefit from focusing on your GI.

Hope this helps -

-p

Post Edited (Pirouette) : 4/22/2016 6:26:59 PM (GMT-6)

collagelymie I heard Bart attacks stomach. Have you tested for Bart?
I haven't tested for Bart, but I think I am infected because of my symptoms.
I also have severe stomach issues, I have pain 24/7 and cannot eat a lot of food. I don't know how to deal with my stomach, it is so difficult.

Super long post? Giggle - you obviously haven't seen many of my posts! LOL!

Bell's palsy of the gut can be caused by Lyme as well. Not only have I been heavily hit by gastro Lyme, but in that article that Pirouette posted, it states: "Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms".

I had such severe nausea that none of the pharma meds ever helped enough - and I wasn't looking to be completely free of the nausea, just to be able to drive would have been nice though! Eventually, the only thing to do was to treat my stomach/digestion by drinking a cup of warm ginger tea 3 times a day for a couple of months.

I have had severe issues with constipation as well, once going as long as 22 days without passing so much as a gas bubble - what did the doctors (gastro doc's too) have to say? "Oh, I see you are having a little trouble with constipation. Be sure to increase your fiber." never mind the fact that I was already taking more than the recommended amount of fiber! The Lyme that I had was creating pseudo-blockages in my bowels. The nerves were misfiring and causing the muscles in my digestive tract to contract and stay that way. A very painful state, especially as it lasts longer.

You can use magnesium oxide, as it's the only form of magnesium that will pull water into the colon:
www.globalhealingcenter.com/natural-health/types-of-magnesium/ But you will need to use another form of magnesium to 'feed' the rest of your body, as you can see in this article that mag oxide doesn't absorb well.

The other thing that could be happening is that you don't have enough stomach acid to properly digest your food. I have that issue as well. As you can see in the "Master Symptom list for Lyme" (which can be found in the "New to Lyme?" thread), it states: "Digestive chemicals (acid, enzymes) reduced or absent" as one of the possible symptoms of Lyme.

Thank you very much Pirouette and Traveler.
So, it means that bacteria attacks stomach nerves?
I used to take ginger tea, but unfortunately I developed ginger intolerance recently, I got severe heartburn and pain when I take it.

How much time it is needed for them to be untreated, so they attack the nerves themselves?

Also, how much time from the moment it start to attack myelin till they start to destroy nerves?
I did MRI last year and it showed demyelination.

With the stomach issues you may consider getting a food allergy test. if you are daily eating
something that our boy dosnt like you not get well
To beat lyme you need your gut to work right so your immune system works right.