Newly diagnosed with Chronic Lyme - Scared to death

Hi All,

Looking for support I guess, as I sit here in denial about this whole scenario.

I'll start out that I have a horrific cervical spine from a concussion/whiplash injury 30 years ago, that resulted in all disc's in my cervical spine bulged or herniated. 2012 has C4-5 discectomy with titanium plate and then in June 2014 I had cervical laminectomy C3-C7, and my health has gone down hill fast from there. Always thinking it was due to my neck issues and a botched laminectomy as I ended up with a damaged spinal cord post surgery.

I had numerous neurological issues that made me doctor jump for over a year. My worst is I have this electric current that shoots down my shoulders and arms if the back of my neck is touched, coupled with carpal tunnel, 5 bouts of shingles in 1 year, 55 pound unintentional weight loss, complete loss of libido, knees give out on me, and that is just the beginning.

Anyway, I ironically met a gal who has chronic Lyme and she suggested I get tested. My pcp was all for it and did the ELISA and the Western Blot with both coming back negative. I then made an apt with a reputable LLMD but could not get in until Oct 2015, so I basically used a lyme literate PA who at least wrote me the orders for the true test. Well I came back positive >80 Burgdorferi with my IGM Western Blot called negative, however I had a 66++ and 41 was IND, but my IGG Western Blot came back positive with 31+ 39+ 41+++ and 58+ (and from my understanding 58 means nothing) So ironically I got in on a cancellation with the LLMD and he calls it that I have 5 strains, and is treating me as Chronic Lyme. Because my apt was very lengthy with all my history, I walked out of there greatly terrified. He put me on Biaxin 500mg 2xday and Flagyl 500mg 2xday for 3 months as well as a boat load of nutritional supplementation to keep my gut and my immunity built up. I heard him mention the possibility of cystic type, yet how can he tell that? Also, when I tell this info to my pcp who is completely on board with me having been tested outside her clinic, she is not in agreement with his choice of medications he put me on.
HELP! I am scared to death. I have always always trusted my PCP, yet I know they are not familiar with Lyme as the LLMD's, and I am so not a pill taker. Can someone shed some light on why I would not have been put on the basic doxy and penicillin like my pcp wanted? (I have a message into the LLMD, but he has not returned my call) I picked up the RX's today and after reading the info sheets, it terrifies me even more! I was warned by my LLMD that I will feel worse before feeling better, yet it was only upon reading these threads that it is called herxing. I am coming into this so blind. Ask me about my cervical spine, and I know it all, but I now know many of my symptoms I have could be two fold. Is it a bad neck or Lyme? Any support or advice anyone has to offer, I would greatly appreciate. I have a special needs daughter (autism), who is my full time job. Am I going to be able to care for her while I go thru this herxing stage? Thanks for those who choose to read this lengthy post and reply if you would be so gracious.

1986er

Hi Charliebug!!
Welcome to our community!! I'm so glad you found us!! I'm sure you will find that this is a wonderful place for the support you are looking for - even if I do say so myself!!

If you haven't ​yet​, it would be helpful 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 important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

Remember to start off very, very slowly. We can help you understand, but you will need to ask a bunch of questions on anything that you are unsure of. Just remember, there are NO stupid questions here!!

One thing at a time. Detoxing is very important and what will help keep you functional. So will starting only one med off and at the lowest doses you can take. I don't have a lot of experience with the abx (antibiotics), but if you can cut them in half if they are tablets - or empty out only half if they are capsules - that would be the best way to start off. And only take one half of a tablet or capsule in a day to start. Do that for 3 or 4 days, and if you are still doing okay and not herxing, then you add in that other half a the other end of the day for 3 or 4 days.

This way you are only killing off small amounts of bacteria at a time. Herxing is when the body is overwhelmed with toxins, so to avoid that, you need to be helping as many detoxing pathways in your body work at full capacity as possible.

You will need to avoid sugar, take probiotics (2 hours after your abx) and drink tons of water each day. Some find a strict diet helpful as well, but not everyone needs that.

We can help keep you as functional as possible, but no one can tell you for sure what it will be like for you. I wish it was otherwise.

Hang in there and keep asking questions!!!!

Charlie
I would have gone to the hospital for spinal meningitis if I didn't have such bad spinal neck issues prior to realizing I had chronic Lyme.

My cervical spine is toast. I had a C5-7 fusion that failed and it took 3 years to figure that out. Medium to severe permanent nerve damage on my left side from the neck not being diagnosed for well over a decade. I need Lumbar surgery but the belief is my neck will collapse if that is done. So I definitely understand where you are coming from.

I was getting the same electric shocks in my spine. These started after I got Lyme from the inflammation it causes. Treating the Lyme has made a tremendous difference. The only time I have any recurrence of those kinds of symptoms is when I start on a new protocol. It's lousy but it also means that I'm herxing and the protocol is going to work. Every time it's happened I am that much better when I finish the cycle of meds.

The Lyme is making what you already have that much worse. I was told by Stanford's pain clinic I would always need pain meds and I stopped them 6 months into my Lyme treatment. The inflammation on someone with spine issues is like pouring gas on a flame.

Ask your PCP what exactly the objection is but an LLMD knows what kills Lyme and doing that will make you better.

Have you ever tried Zyflemend by New Chapter? It's a natural anti inflammatory. It was recommended to me after my first surgery and it does help. Amazon has the best price I've found.

I agree with Lymie Girl - start with biaxin and then add Flagyl.

Don't wait to start the detoxing...you'll be much better off if you get going on it right away.