My story, and Looking for a LLMD in North Carolina.

I am a 31 year old male who started off being ill in areas of endocrinology, low blood sugar drops sometimes every 30 minutes to anywhere from 72 to 31, now developing severe vertigo, visual snow and static that causes inability to see about a third of things, forgetfulness such as walking to the mailbox 3 times in a row, I have developed heart arhythmias, which are increasing in frequency and danger, was one skip at a time thousands of times per day, and now it's multiple skips in a row quite frequently. I am losing some fine motor skills in my fingers and feet some days, I've had MRI's since I 2006, and it started with 1 white matter lesion, now it's up to ten. The MS specialist I saw said it was all anxiety related, everyone has lesions... which is far from true. Spinal tap was clean so no one is willing to test for lyme after that. Diagnosed with sleep apnea last week, and I'm 144 lbs. 7 neurologists, 7 endocrinologists, 4 gastroenterologist, 10 pcp's, 2 neuroendocrinologist, 1 neuroopthamologist, 1 seizure specialist and probably 20 others than I can't name. I refuse to believe all of these problems are happening independently of each other.

I live in NC but the only 2 docs are Dr B, (booked all year) and a woman doctor who doesn't practice any longer. It's very hard for me to travel far because of my glucose drops. One doctor's assistant even told me some people who couldn't get to the doctor were using Antibiotics for animals or ordered online to start their therapy if they couldn't get to a doc or afford one.

I live in Lincoln County, which is around Charlotte. Thanks, everyone.

Post Edited By Moderator (Traveler) : 7/6/2011 3:13:44 PM (GMT-6)

Hi Springsjean; Funny you mention that, I called them earlier today and the lady I spoke with told me told me they could mail the kit if a doc requested it, but the fee for doing the full lyme kit would be $475 I believe. I used to see Integrative docs years and years ago that insurance didn't cover, but long are those days due to financial difficulty. Now it's a miracle to get the $30 copay. I will try to sell as much as I can to earn it but I'm hoping for the rare blessing of getting approved for disability, which is in the works, and of course usually like winning the lottery in chances of doing so. Every one of my doctors are so arrogant about their knowledge, I truly believe MAYBE one doctor would do it, my endocrinologist, who after 7 years discovered my low blood sugar at a level of 31 when all else said I was making it up.

Once I get a positive on that test (assuming I will) are you saying that my doctors will truly believe that Lyme is my issue? I have gotten tons of white matter lesions diagnosed, frontal lobe slowing, inability to walk some of the times, etc, and my Neuro's still say since they can't find the concrete cause that it's in my head. It would be great for some compassion from them, but I find that in the Lord nonetheless.

Another question, I noticed in your signature it said IV therapy was denied by your insurance, does that mean you didn't get to do it or that you just had to pay out of pocket? I have heard IV therapy was much more successful than oral therapy... but I don't know how much more. Also, would shots of antibiotics be the same as IV therapy? Like I said an unknown doctors assistant vaguely told me if you can't get to the doc, antibiotic shots of animals have been used by people she's known. I don't expect you to promote that of course, but in my health, making an 8 hour car ride is very unlikely to happen. My nerves alone are horrible now, my anxiety over all of this makes everything worse, and I feel like it's not from me worrying, but from a physical malady. I have Wolfe Parkinson White so me just getting anxious puts my body in danger, as my heart rate can go up to 190 and if i gets high can stay that way for hours upon hours.

Are you doing better on your therapy from where you came from?

Do the herbs help a lot?

Thanks for the response :)

Thackery

I live in NC and have some doctors names for you but obviously I cant post the names on here. You do not have an email listed so if you will either post your email address or email me at [email protected] I can send you the list of doctors I have! There are a few in the raleigh, chapel hill area as well as other locations.

L

HI Thackery!
Welcome to our forum!! I am soo sorry to hear of all that you have been through, but you have found a great place to come and learn! I'm sure you will find us to be caring, helpful and understanding!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.


I had to edit your original post as you had used a doc's name and we don't like to post them here, but ask that people share them through private emails instead. The reason for this practice? It's because we have had some of our doc's loss their licenses for a short period of time (the one I know about was a year), because they are willing to give us the kind of treatment we need - high dose, long term abx's. Thank you for understanding in advance!

Something else you should understand is about these tick-borne infections (TBI's) is that the testing methods used are quite unreliable, so many with tbi's must be diagnosed clinically. The CDC actually states that this is the way tbi's should be diagnosed!! It's the insurance co's that require a positive test result or the doc themselves usually.

There are several natural routes you could take. I'm using one because I was too ill to be able to stand up to an onslaught from abx. Here is a link to the most common natural protocols: www.lymediseaseresource.com/Protocols.html

You would most likely find reading Dr. Joseph Burrascano's "Advanced Topics In Lyme Disease" quite informative. It, along with the above link can be found in the "New to Lyme?" thread I mentioned above, but I'll give a direct link here:betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf In this paper, Dr. Burrascano talks about not only Lyme and it's different stages, but also about the different infections that usually travel with it. Another thing you could do is to 'google' the phrase "Lyme on the brain". There is an excellent article by Tom Grier actually titled "Lyme On The Brain" which I believe to be an excellent source of info, but be sure you can read all 4 parts. Some places are only offering 1 or 2 parts of this.

The best thing you can do for yourself is to be your own advocate! You should read, read, read!! Read everything you can - before you go to a doc and then continue on reading!! That way you will understand the things that Lyme & other tick-borne infections can do to a body, and how some approach healing from them. Each person's treatment that will work will be unique to them, because each of us have different weaknesses in our bodies and different strengths.

We welcome your questions and sharing your experiences with us!!! Once again I would like to say Welcome!!!

Fight through, the Dr in Chapel Hill is booking new patients in the March 2016 due to illness. She has Lyme as well, but there are other things going on with her now. Several forum members that were new patients and their appointments have had to be rescheduled.

Thackery, the Olive Leaf has anti microbial properties and will definitely kick your butt. It was recommended to me by a veteran on the forum. She suggested that I take it for a month starting at a low dose and working up. The first week I was slammed and I developed fever blisters for the first time in forever. After lots of discussion on the forum I decided it was because some of Lyme was being killed off and that stirred things up enough to allow the virus that causes fever blisters to exert itself.

If you've had symptoms for a while, the immune system stops producing antibodies to Lyme. So some doctors will do a short course of antibiotics (4 weeks) before having the Igenex test run. The OLE does the same thing as the abx.

My exposure was 35+years ago. I took the OLE for quite a while, but started at a really low dose. The first week was terrible, but after a week I actually had more energy. When I increased the dose, it kicked me in the butt again so I dropped back and waited another week or two. In all, I took the OLE for a couple months before having the tests run. I got a definite positive.

Kim