New member - Dead end with my LD treatment

Hi,

I'm a new member here. Please bear with my long initial post as I introduce myself.

I've had unexplained symptoms on and off for the past 7 years starting with some heart arrhythmia, severe shortness of breath and weakness. The symptoms resolved after several weeks and I resumed running and cycling but I never felt as good as did before. Then I started having tremors, panic attacks and night sweats. I would shake at night as if with a high fever. I felt "bad" all the time. My vision started to do weird things and I developed a lot of eye floaters. My muscles would be unusually sore for days after activity. I experienced terrible hangovers on amounts of alcohol that wouldn't have bothered me before. I stopped drinking.

Since then I have seen many doctors including cardiologists, neurologists, a ENT, endocrinologists, an ophthalmologist and an allergist. I've been in the ER several times for heart and head symptoms. I've had multiple MRIs, CAT scans, cardio stress tests, a EP study, allergy tests, hormone tests, nerve velocity conductivity and electromyography tests and a cpk blood test. All tests came back negative. I was given lists of psychiatrists and prescriptions for anxiety drugs. I was told it was just stress or in all my head.

I was finally diagnosed with LD in April of 2012 after a positive Igenix IgM WB (+ on 31 and 41, IND on 49 - negative IgG incidentally). I began treatment with a LLMD for LD and Bartonella with abx in May 2012 and began to feel better around September. I also started Trileptal and Neurotin for nerve pain. I am historically a endurance runner and cyclist and was able to resume activity, at a lower level than before but I felt better than I had in months I and I was improving. I started taking Samento and Banderol for biofilm. We planned a ski trip. Things were looking up.

Then in November I had a amalgam filling removed and was immediately dizzy with ringing in my ears and a headache (mercury poisoning?). The dizziness went away after a week but the ringing and headache remain. A couple of weeks later I had ACL surgery. Since the surgery my LD symptoms have returned with a vengeance with a lot of new neuro ones added. I'm told surgery can cause symptoms to flare or recur but was on abx during the surgery and afterwards.

My LLMD seems stumped and had me discontinue all the abx and the Trileptal to see what symptoms would present themselves. I'm off abx but still on Neurotin, magnesium and probiotics.

I wasn't aware of a need for detox during LD treatment until the last couple of weeks. It sounds like that's something I need to do (body and brain?). Why don't all LLMDs tell you this? I'm waiting on test results for heavy metals related to the tooth and will detox for that if needed. I don't know how much of my neuro issues are related to the Trileptol and Neurotin and the related withdrawal. It seems that after weeks those would have gone away but I don't know.

My neuro/mental symptoms seem to be getting worse every day. I have a headache every day and my ability to think or articulate thoughts is way below normal. As a result, I find myself being embarrassed when talking with people. I'm having reading, memory issues, tremors, night sweats fatigue and weakness. My leg muscles and face twitch.

I feel worse than I've ever felt. I'm really concerned and have that same desperate feeling I had before being diagnosed. I don't know where to go from here. A new LLMD? LLND? Herbal? Diet?

Hi AU,

You've come to the right forum. Other peeps will be on very shortly with advice. You are still relatively new in treatment if you have been sick for years. I have heard that amalgams can cause a lot of issues. Muscle twitches and tremors may possibly be caused by a build up of toxins. Also neuro issues can be caused by that as well. I believe personally some of my neuro issues were from yeast so I have gone on a pretty strict diet to eliminate/control that. Yes DETOX DETOX DETOX. We talk about that a lot on here and I think most agree that it is a must. Drinking lots of h20...eating healthy.......epsom/H2o2 baths...exercise if you can...and supplements. Probiotics are a must....herbs...up to you. I use both herbs, abx AND just started with an ND doing homeopathics.

Unfortunately with this disease it often takes many folks multiple attempts using different methods before wellness. You aren't at a dead end....you just need to choose what you are going to start doing differently whether it be detoxing or adding herbs in etc.! Chin up!

Thanks for the recommendation. I just ordered the Neuro-Antitox II - CNS/PNS and will pick up stuff for the detox bath this afternoon.

I want to add that many of your symptoms are classic symptoms of Babesia (night sweats, panic attacks, shortness of breath). Were you treated for Babesia? That could be the problem and why you didn't get better fully.

You are correct that you do need to detox. Not all lyme drs. are aware of that. Also, not all LLMDs are created equal. You may need to see a more knowledgeable LLMD or one that simply uses a different, more holistic approach.

AUS64,

I want to welcome you to the forum. As others have said. you have come to the right place. We are eager to help and support you.

If you haven't done so already, I would urge you to read the thread entitled "New to Lyme....Start Here?" at the top of the thread column. It has some good information that would be useful for anyone with this illness. Please pay particular attention to the section on detoxing, without which, it is very difficult to become well.

I will not jump into the fray offering treatment advice. Instead, I would like to ask you a few questions. What kind of timeframe do you envision with the current treatment approach? How long would you be willing to continue your current treatment approach before you would consider a different approach? Are you aware of the pros and cons of your current treatment approach? Are you familar with the pros and cons of other treatment approaches? Have you really thought about the challenges that your body, soul, and spirit is facing, and have you evaluated how each of the treatment approaches might best meet those challenges?

I am not asking you to publicly answer those questions here in print. I am just suggesting some basic things to consider so that You might develop a philosophy of how to think about the illness that you are experiencing. My personal experience is that it is worthwhile to lay this foundation rather than to try to guage popular opinion. I learned that it was best to think for myself.

I am not necessarily disagreeing with anything that has been stated here so far. I am just saying that you must "own the cause". Any course of action that you take must come as a fruit of your own convictions. This is my friendly advice.

I wish you well in whatever direction that you decide to take!

Don