I treated for LD for about 2 year. It was not pretty. I had some nasty bad days and at times thought I would never get rid of it.
In the end I stopped abx before I was completely symptoms free. Why? Because I felt my body needed a break and because I had a hunch that most of my reminding problems where related to leaky gut.
It looks like I was right. My last reminding sx were mild join / muscle pain and what I thought where heart issues. After stopping abx the pain went away and what I thought where heart symptoms turned out to be stomach related. How do I know that?
Well - I had a full cardio checkup and everything was negative. I did have a few heart skips but turns out most people have then. They are normal and harmless when everything else checks out.
But I definably saw the connection between what I thought where heart skips and stomach problems...like whenever I felt that weird heart sensation I thought were heart skips, I would either burp or had to use the restroom right after. Yes basically it was gas or reflux.
A GI checkup confirmed that my esophagus was irritated. This made sense to me because while taking abx I did not take care of my gut. That was a big mistake.
Today I believe I am lyme free. Yes I always worry about it. Every small health issue I have, I always attribute to "is the lyme back". Thankfully it is always something else.
It has been 3 years now since I stop. I feel good. Yes, I have bad days but they are not related to lymes. It took me a while to undo the emotional damage this whole experience caused. I am bit of an anxious person and somewhat of a hypochondriac. That is a bad combination for someone with LD.
I think part of my "cure" has been staying away from reading anything about lymes and just trusting my family doctor.
I know there are some really sick people here. It sucks and I am not denying your struggles. But I know in my case I did a lot more worrying that I needed to. That is one of the worse things about LD.
Just too much false information out there. Bad combination when the medical community is also so divided. You just don't know who to trust.
BTW - a few month ago I even took oral steroids after I pulled my back. Man that stuff is nasty and I was scared. I had some nasty side effects and thought "here we go, I messed up and brought back the lyme". Turns out they were common side effect (mood changes, anxiety, I felt tense etc).
My non lyme sister was also taking steroids for a different issue and she could not finish them because of the side effects.
Point being - I took them and I was fine which gave me more confidence that I am indeed lyme free.
In the end here is what I would have done differently:
1. Gone to a LLMD from day one. 2. Taken better care of my gut 3. Taken better care of my body - I still struggle with this one but getting better
4. Try to stay positive and not be sucked down by the dark side of the lyme community. This is hard to do because you really need to be your own advocate so staying away from the false information is hard.
5. Relax, relax relax. I have meet way more people that have gotten LD and are now totally fine than the really bad LD cases we hear about. Again I am not denying that this is a nasty disease. But there are more success stories than scary ones….this is why I wrote this update…
Ok this is way too long and I sure full of typos but I am tired and going to bed…good night. I really hope this update brings hope to some of you.
Blessings -PhillyLyme
................................................
(breaking up the text for easier reading for many here)
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm happy to hear you are doing well. It's very encouraging.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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