Lyme Disease Support Group

I went had all sorts of tests performed and was initially diagnosed with epilepsy. However when the doctors failed to find abnormal electrical activity they changed the diagnosis to generalized anxiety and told me it was all in my head. I knew this was not the case because the pain was absolutely constant and I had never had trouble with anxiety before.

Fast forward 11 years. Things never once got better but they did eventually get worse, and at 32 I decided to try to fight again. I tried dozens of suppliments but nothing seemed to make any difference until I took amoxicillin for an unrelated throat infection. When I took the drug after about a week the pressure/numbness started to shift ever so slightly. I immediately suspected Lyme since I grew up in PA and was bite by dozens of ticks as a child.

I went back to the doctors but tested negative with ELISA. I begged for a WB test but the doctor refused, and he even refused to sign for the test if I pay for it myself since I clearly don't have Lyme (not surprising since I currently live in Hawaii).

So I said screw it and I ordered amoxicillin from India because at least there was a change for help where all doctors I've seen have offered none. I took amox 1500MG a day for 3 months. The first two weeks I felt sick and experienced the same sweating and temperature that I usually did once a month, then these symptoms stopped. I switched to doxy 400MG a day for another three more months. Recently I've added Samento and Carnivora to my routine.

The problem is that I've only made minimal progress. I went from basically having no sensation (except pain) in the right side of my face, to some sensation (maybe 20% more) but continued pain. My wife is worried that I don't have Lyme and I'm killing myself with these drugs. Even I am thinking maybe the improvement I've seen is somehow just from suppressing my immune system.

Should I keep going at this point? I don't know what to do.

Welcome to the family!

I'm sorry for your situation..it sounds like it's been a long 11 years..

I would try my hardest to find a llmd, do your know of any in Hawaii?

Lyme disease is all over, but the doctors that are lyme literate are not, and that poses a problem for all those infected..

I would personally not treat myself, especially with antibiotics, you just don't know the side-effects and the possibility of something happening without a doctor's guidance is not something to be fooling around with.

There has to be some kind of llmd in Hawaii..I'm not saying you haven't looked, but maybe there are naturopaths or someone that knows how to treat lyme there.

My opinion is not to self-treat, and to honor your wife's concern.

She obviously loves you and doesn't want anything to happen to you..

There are lots of wonderful people on here that will support you in your search, Betty G is a group leader with a list of llmds in all states..or ones that have llmds in them.

I wish you the best in your search for care, it is crucial in the long run..

Keep searching and healing, you have our support.

peace

I thought I'd take antibiotics and that way I'd be able to find out the truth myself. I maybe stupidly assumed I would be able to tell whether it was working within a few weeks. Now here I am 6+ months in and the progress I've made still isn't enough for me to be sure it's Lyme.

Dropping the antibiotics isn't a great option either. I do not want to lose what progress I've made, there ARE signs that I'm on the right track as I've made some progress on my numbness/pressure, and recently I've been feeling absolutely calm at night when for the past 12 years I've had this subtle anxiety or nervousness. I'm also afraid that it may make things much worse since my immune system is now weak.

I suppose I'm screwed as I'm pretty determined to keep going until I've determined that it's definitely not working. It's a stupid risk sure, but in my experience I had absolutely no chance with the medical profession and a risky chance is better than nothing.

Thanks for the welcome!

~~~little progress is progress.You've been sick for a very long time.healing will take a very long time.

~~~If you are going to self treat,at your own risk,educate yourself non stop to learn to do it properly.Feeling worse after administering a drug or herb is called a herxheimer,or herx, and is indicative of it's effectiveness.Keep educating.

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~lovey-dovey~~~Mitchell

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~lovey-dovey~~~Mitchell

Go to the top where it says Forums..

The top one listed is Doctor's Requests..

If you post in there, someone will find you and try and help the best way they can..I would but I don't have that list!

Again, welcome, and no matter what you decide, we're here to support you and see you through your journey..

peace

If you are going to self treat you must learn as much as you can. Treatment takes a long time, I have a lot of co infections, so my case might be a little different. I have had Lyme and company for 2 years, I have been in treatment for 7 months, I have had a lot of improvements, but still have a ways to go.

I recently stated taking Lumbrokinase and it may be making all the difference in my case. I need more time to be completely sure, but I'm getting more and more certain I'm on the right track.

~~~Lyme is very complex disease. And so, Lyme Complex Disease. It is not enough to treat from only one angle.

~~~For instance, if you have Lyme with co-infection Bartonella, you would need a combination if different abx or a combination of herbs. And so it is important to determine more of what it is you are dealing with for a more targetted approach.

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell