Hi, I haven't posted on here in quite some time. I don't know if anyone will remember me or if anyone can give me some guidance. I have basically been taking amoxicillin 500 mg 3xs a day since August. I'm seeing a LLMD. I'm breastfeeding my son so not many options. Well despite giving my son a probiotic and despite taking one myself, my son was having digestive issues and I have been having severe bloating for two months. It's very uncomfortable. I also started getting horrible nausea a little over a week ago. I am waiting to see my GI doctor to make sure it's nothing to do with my ongoing cholestasis that I've had since my pregnancy with my son but my appointment isn't until January. I am waiting to see my LLMD (in about
a week). I had a phone consult with him and told him about
the horrible bloating and he said I could try taking two days off the amoxicillin. I decided to go for it. I immediately noticed that I felt much better than I've been feeling - like I felt almost normal for those first two days. After reading in online groups I have decided I don't believe that antibiotics truly take care of chronic Lyme. I've met three people who had IV antibiotics, and who cannot stop taking antibiotics or their symptoms just come back. I've also read of the same thing happening to many others in forums and online groups. I do not want to take antibiotics for the rest of my life. I already can't handle the changes it's done to my gut. I decided to try not to take the amoxicillin. Before stopping the amoxicillin I was not symptom free & was actually still having low grade fevers (I believe I was actually herxing almost all of the time), but I was back to being functional. I was still having rotating symptoms and random pain (like joint pain in my right knee or pain in my fingers and toes) that would come and go for hours or days. After stopping, my symptoms have been increasing. They come in these horrible, random, powerful waves, like someone is suddenly turning them up as though turning up a volume knob on a radio. Is a wave-like pattern normal for Lyme? I get moments where I feel almost completely normal despite having pain, just like my old self but not symptom free because I always have some pain or tingly numbness. Right now I have a new cold patch on the bottom of my right foot, tingly-numb left thumb, horrible exhaustion, depression, anxiety, bone pain at top of left shin, pain in the back of my left thigh, feeling like I'm going to lose my mind, pain at the top of my left foot (which had previously been totally numb for quite some time but then become painful and then was pain and numbness free with full feeling while taking the amoxicillin), persistent nerve pain in my upper right middle incisor, blurry vision, weakness/feeling unwell, tightness in my throat, weird sensations/smells in my nose, suddenly feeling (but not expressing) anger at family members who have not been understanding what I'm going through or who have been unkind to myself or my son or husband, OCD type things, and more. It all comes in these waves on and off but seems to be getting worse/stronger. I don't want to just go back on the amoxicillin as my gut wasn't tolerating it and I just don't feel it is the answer. Is this normal for someone stopping antibiotic treatment? Does this sound like chronic Lyme? Am I a hopeless case? Will I ever be able to feel completely like my old self again? Could any of this be explained by candida overgrowth or something else? Earlier today I had a horrible couple of hours where I felt tightness in my throat, depression, fear, a sense of this horrible unwellness in my body, almost a panicky fear, and could not concentrate on anything else but what on earth was going on with me and just feeling so scared about
it. It faded away and I feel fine now except for my tingly-numb left thumb, cold patch now behind my left knee (it had been there before too but went away on amoxicillin), and exhaustion. If any of you have tried stopping your antibiotic like I am, can you tell me if this all will only get worse? Or could it just go away since I am having moments and hours where I feel almost like my old self again about
4-5 years ago? What do you make of these bizarre and scary horrible waves? I also had one earlier too but with different symptoms - is it normal for the symptoms to change and rotate and also be almost barely there at times? I get them it seems a few times a day ever since stopping the amoxicillin. Is this all just permanent damage? Or could it be like how most doctors and the CDC say when you stop antibiotics you will still be having symptoms but they will stop over time? Or could these bugs be like reproducing and coming out of hiding and wreaking havoc on me? Do these symptoms sound normal for Lyme? What about
the weird wave-like pattern? I just don't know what to do. The more I read, the more it seems there is no cure for Lyme...Like people get into remission but it comes back...that antibiotics don't cure...I'm so scared!!! I am at a point where I'm scared enough about
what I'm experiencing when I'm experiencing it that I'm willing to wean my son and try herbs or really anything to make it stop. And yet there doesn't seem to be anything that can make it stop and give me my life back! Please, anyone who can give me any guidance, please I'm so scared. I don't know what to expect going forward. I can't keep killing my gut taking an antibiotic. And honestly I don't want to live a life dependent on a drug that is only a bandaid and damage my immune system via long term use. I want freedom, I want my health back. The longer I took the antibiotic and the more symptoms are now showing up while I'm off of it, the more I am coming to believe I have had Lyme all along from a tick bite in 2011 which was asymptomatic until I gave birth to my son at which point it began to come out gradually. I feel that then with this summer's new three bites I added more bacteria and potentially other pathogens (I tested positive for RMSF twice, six weeks apart). I mean, is it all hopeless? Can I ever regain good health? I just want to feel well/normal again. I am so sorry this is so long. I am so sorry to be asking for help. I hate being in this position. I absolutely hate it. It's forcing me to make changes and decisions that I would not naturally choose to make and it's just running my life and what I can and can't do. I so wish there was some way to communicate with the bacteria and tell it not to reproduce rather than trying to annihilate it which just seems to cause near intolerable herx suffering (in the beginning) and doesn't actually irradicate it. Please help me if you can. And please forgive me for continuing to come here to ask for help.
Post Edited (H Mommy) : 12/22/2016 10:21:24 PM (GMT-7)