Lyme Disease- Hanging On

Hi everyone. Trying to reach out as I have come to the end of my rope. I was diagnosed with Lyme about a year ago after many misdiagnoses here in Buffalo, NY. Finally I went to Westchester, NY and was treated by Dr. C in Mt. Kisko NY. I can trace the symptoms back to 19 years ago, on Cape Cod Mass. I lived there for about 25 years. Through the past 19 years, I have had shots in my back because I was told I had herniated and bulging discs, hip pain, memory loss on and off, burning in my testicles, etc. The Dr. put me on doxycycline, 300 MG for 10 weeks. Felt awful at first, them many of my symptoms were alleviated, especially my back pain. After 10 weeks, I began to become seriously agitated and from the advice of the doctor, stopped the antibiotics. It's now 3 1/2 months later, I'm still suffering from the brian fog on and off, watery eyes, and chronic plantar facia. I did change my diet for some time, (no meat, dairy, little coffe, no alcohol. ) haven't been as strict with the diet as when I started, hard to do). My question is should I go see my doctor again, (very long drive and money), and other suggestions). Obviously has been very very hard on my wife and kids. HELP. Desmond in Buffalo, NY

Post Edited By Moderator (borderlyme) : 9/10/2012 7:25:40 PM (GMT-6)

Hi Teacher, so sorry to hear you have been sick. Lyme is just such a long journey but it is so so worth it to feel better and be able to live the life you want to live. If you believe you have lyme for a long long time, 10 1/2 weeks of antibiotics will not even put a dent in the buggers. As you know, lyme bacteria can invade every system, organ and tissue in our body. While I'm not sure if it is possible to totally get rid of it, in my opinion our bodies of capable of being able to fight it off once we get it to controllable measures. I was on antibiotics for almost 3 years and while I am not 100%, I am feeling terrific overall. I've had to make many changes and accept my new lifestyle which I think we have to do with anything. Have you thought about seeing an naturopathic doctor to treat the lyme with naturals rather than drive so far and spend too much money. I have to admit I was never one to be strict with my diet. I agree and recognize that it does help healing but I just didn't have the extra money and energy it took. I am now dieting and trying to get on a healthy eating lifestyle but refuse to not enjoy life at the same time.

I hope to "see" you around on the forum. It is such a wonderful place to vent and talk. It has helped me tremendously in my lyme journey. Be well.

I second what Lighterbeing said about joints feeling better on grain free rather than meat free . I notice a very big difference in pain ( both muscle , and joint ) when I eliminate all grains , sometimes I think its not working but that is usually when I've been using too many brown rice products or gluten substitutes .. if I cut that out and just do meat , veggies , seafood I notice the benefits tremendously ! I know its not fun to sacrifice all the other foods out there , but I keep reminding myself its a small price to pay to be nearly pain free and my health and enjoying life is more important . Helps to remind yourself of that part when trying to stick to something like gluten free .
I am sorry I am not much help in the way of doctor advice , I am just starting to search for a LLMD myself . I wish you luck in your journey though !

Teacher01, in your research and going through these boards you will discover that many people get well by doing herbal remedies. There are a few herbal protocols that I believe are listed in the 'New to Lyme' thread at the top of the forum. I haven't gone that route yet, but I *believe* it is less expensive than the traditional route. Others that have done it or are more knowledgable may be able to attest to that. But I know in the research I've done, I agree with other posters 10 wks. is not nearly long enough to kill this off. It's scary and disappointing--we all know. There are herbs you can take along with your antibiotics to help support your organs and lymphatic system from the havoc that the antibiotics wreak on your body. I've been in treatment for only 7 wks. and am looking at least a year for me to get rid of an infection I believe may only be a year old. We'll see how it goes.
This forum is a lifesaver for many people. I'm glad you found it. There are people on here that are by far more knowledgable than most doctors.
Good luck! You can get well! My practitioner that is treating me had Lyme for 20 years and she got better! We all can!

Hi Teacher!
First of all, 300 mgs a day of Doxy isn't enough to actually kill off the bacteria, it's only enough to keep them from replicating. This is why knowledgeable LLMD's will prescribe at least 400 mgs a day, and many prescribe 600 mgs a day, all divided into 2 or 3 doses a day for continual killing power.

I ask everyone - at least once!- if they are detoxing.This is a crucial aspect of healing. We pick up toxins every day in the food we eat, the air we breathe (even if you live in the country!) and the water we drink. When we take abx to kill off an infection, our toxins increase more, and when you have a tick-borne infection, the bacteria itself produces toxins, and when they die off they create even more toxins. So it becomes very important to detox! We have a great post explaining the best ways to detox while you have tick-borne infections in our "New to Lyme?" thread that sits at the top of the forum. I believe it's the third post down.

You do have many options for healing from these infections. There are quite a few of us here using natural means to heal, and they are very effective! Some combine abx with herbals to help them heal more effectively, and some are able to just stick with abx alone.

These infections are very hard on us of course, but they are also very hard on the families of those who are infected. There is so much misinformation out there!! There is a support site just for those family members of Lyme patients, it's called Lyme Spouse (www.lymespouse.org/). I checked it out pretty good when it first started and the info there was good, and it has it's own forum for members so that they can talk about how it is living with those infected with these horrid infections.

Your agitation may have been a symptom of your infection(s), and you should have been helped through this time, rather than being told to go off abx! It's known as Lyme rage, but can happen with a Bartonella infection as well. I've lived through some pretty hairy times thanks to my Lyme rage ! Embarrassing too!! LOL!!

If you are looking for the natural protocols, here is a link to the most commonly used ones, although I would advise you to stay away from the Salt/C protocol, as it's dangerous. Otherwise, the others are all created by knowledgeable practitioners: www.lymediseaseresource.com/Protocols.html

Of course it would be best for you to see a Practitioner to help you decipher what's going on with your body, but many are going it alone as well.

During your two week break, I would suggest that you get started detoxing, if you aren't already. It would be great to start off your treatment with your body already used to the extra help with detoxing!

Above all, you are not alone! We are here to help you figure out what's going on and with suggestions of what you can do, or just to vent a little!!!

Shabby chic is right about that too. I had many friends go that route successfully as well.