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Undiagnosed-possible Lyme

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Posted 12/13/2013 3:48 AM (GMT 0)
It all started for me being in Feb having symptoms of dizziness, anxiety, coldness in my head, thought I was going to pass out. I didn't go to work for two weeks I had night sweats and intense feeling of being out of control. The primary care dr did blood work (thought it was my thyroid) and put me on anxiety medication which didn't change anything I still felt bad all the time. I went to the gastro dr, behavioral therapy, 2 primary care dr, rectum dr, chiropractor, orthopedic surgeon, physical therapist, cardiologist, and neurologist.

By the time I went to the neuro it was nine months into my "sickness" my symptoms had turned into constant numb tongue, numbness in left side of my face, feel like out of body experience, numbness in my left calf, seeing tons of floaters, sensitivity to light, dizziness. She sent me off for an MRI because she said my symptoms sounded like MS but the MRI showed no signs of lesions. I did the whole heart holter thing and the only thing the cardio found was that I have a slight premature heart beat and a slight leaky valve (which i didn't like the sound of but she said it was normal).

For my blood tests with the Neuro my Lyme came back Abnormal then the Western came back normal. Based on what I had read I requested to be treated with antibiotics due to the first abnormal testing but I don't see much improvement. Any tips out there? I read a lot of the posts on here and feel like maybe I am different since I didn't get a sure positive on either of mine.

*Edit* The only thing I've been officially diagnosed with is SI joint pain in my left buttocks/leg.
Posted 12/13/2013 7:04 AM (GMT 0)
Hi GingerAnne,
Welcome to the forum! This is a great place to start. The members here are very knowledgeable and are a wonderful support.

I am very sorry to hear that you are experiencing this. It does sound like you have many of the Lyme symptoms. And based on your results, I would have done the same thing. Blood tests can be inaccurate, and many Dr.'s give a clinical diagnosis just based on symptoms alone. Are you being treated by a Lyme Literate doctor? That is very important, as most regular MD's are not very knowledgeable about the many different ways to treat Lyme. What are abx are you taking and how long have you been on them?

Treatment with antibiotics is different for everyone and often people need long term treatment with multiple high dose abx. Personally, I have been on 3 different herbal abx and 5 regular abx. Some didn't work for me, and some I took together. I've been treating co-infections and just began treatment for Lyme. Been in treatment for 3 months.

I hope you are able to get the help that you need to begin treatment and healing. Other than finding a LLMD, I would say educate yourself as much as possible. Ask as many questions as you can and demand the treatment that you need!
Posted 12/13/2013 3:37 PM (GMT 0)
Hi gingeranne,

Given your symptoms and your positive Ab test I would recommend getting evaluated by what us lyme folks call an LLMD or a lyme literate medical doctor. There are not too many of them and the referral system is 'underground' for the most part since these drs are targeted by medical boards.

I would highly recommend going to our "New to Lyme" thread. There is a lot of information there including information on how to get dr referrals. We have a lot of great members on here as well that will do dr referrals. You can start a thread "Looking for an LLMD in ______"

Sorry to hear you are going through this - but I'm sure with the help o fthe members on this forum we can find someone to get you squared away and feeling better!

~beth
Posted 12/15/2013 7:40 PM (GMT 0)
Hi gingeranne,

what kind of treatment are you getting? what abx (how long, what dosage?), herbs, supplements are you using?
Are you herxing?

MarieLS
Posted 12/15/2013 7:50 PM (GMT 0)
It would be good to get tested just to see if it can be ruled out, rather than waiting too long and having the infection get worse. I wish you the best and hope you get an answer soon. Keep reading while you wait.
Posted 12/16/2013 9:10 PM (GMT 0)
bump
Posted 12/17/2013 1:26 AM (GMT 0)
Sorry for the delay in my response. I am currently on doxy 100 mg (28 days) twice a day. I was prescribed the med by my neurologist per my request. Recently I've cut out all caffeine, alcohol and have been trying to stick with whole foods. One night I was browsing through the vitamin section at Earthfare and came across this detox bath salt that I'm slightly obsessed with now called Dr. Singha's Mustard Bath and it seems to help my joint pain. I'm not really sure if I understand what herxing means so I can't tell you if that is happening or not. Thank you all so much for your feedback! Also, does anyone else do the detox baths?
Posted 12/17/2013 4:07 PM (GMT 0)
Hi Gingeranne,
Welcome to our community! If you haven't yet, please do read through our "New to Lyme? Start here!" thread as it's packed full of really important information. Things like important articles, symptom lists (as Lyme is rarely the only infection passed), how to detox (a must!) and even questions to ask any doctor that you are seeking treatment from.

200 mgs of Doxy a day will only keep the bacteria from replicating, not kill any of it off, so your herxing should be very minimal at that dose. You will have to be on at least 400 mgs of Doxy a day to heal, and many need as high as 600 mgs of Doxy, or other abx added in as well in order to heal.

Also, 28 days isn't long enough to rid the body of this incredibly complex bacteria. This isn't like the pneumonia bacteria or others, it can actually hide from the immune system and in the bones, organs and brain to escape the antibiotics. This is why high doses and long term treatments are necessary, otherwise as soon as you are under just the right amount of stress, the symptoms of Lyme will all come back to you once again, and possibly a lot stronger as the infection will have had the opportunity to really imbed into your body deeply.

You're not 'different' because you didn't get a clear positive on any test - that's actually not easy to get! Most of us here have not had a positive test result until we are at least well into our treatments, when bacterial loads are lowering and the immune system finally starts working again.

You really need to be seeing either a Holistic doctor or one that has been through special training for treating these very complex diseases. If you need help in finding one, please do let us know!
Posted 12/18/2013 2:05 AM (GMT 0)
Traveler-thanks for your info! I hope this doesn't sound naive but do Holistic doctors prescribe antibiotics? Guess I'm wondering since you said I'd need a more intensive round and the fact that I don't go back to my Neuro for a check up until May 2014.

I would def be interested in learning of a Lyme literate Dr. I live in East TN and have done some google searches but haven't found any. Any info you can share there would be greatly appreciated!
Posted 12/18/2013 6:37 AM (GMT 0)
gingeranne, holistic drs. can prescribe it some states, but not others. You could contact one to find out. Good luck.
Posted 12/18/2013 11:33 AM (GMT 0)
my LLND--- LYME LITERATE NATUROPATHIC DOCTOR-- does prescribe antibiotics and is absolutely terrific if you need a good doc and are close to NH. I think that you should try to see either an LLND or an LLMD. They are specialists in this disease LYME. I would recommend you read an intro on this page below from a doctor who treats this disease because it is very educational on what the bacteria is like and how hard it is to diagnose and treat. It is a great intro to this complex disease. just copy and past the following link. I have no affiliation with this doctor or with byron white but have started taking the supplements by byron white this month i just really like this article. One of many ways to treat this disease is using herbal remedies. There are a number of good protocols that are herbal right now.

http://www.gordonmedical.com/unravelling-complex-chronic-illness/protocols-offered-at-gordon-medical-associates/guidebook-for-the-byron-white-formulas-table-of-contents/introduction-to-the-byron-white-formulas-and-their-use-in-lyme-disease/
Posted 12/18/2013 4:34 PM (GMT 0)
While I don't have any listings for ND's that are Lyme literate in Tennessee (doesn't mean there aren't any out there though), I do have listings for several Lyme literate docs in the Nashville area if you are interested. Just send me an email by clicking on my name or on the little blue envelope under my name.

Please do be sure to include your user name and the area that you wish to find a LLMD in. Thank you in advance!
Posted 12/22/2013 4:01 AM (GMT 0)
Hi gingeranne. I, too, am located in East Tennessee. I would be happy to share information with you about my medical provider if you click on the blue envelope under my name and send me a personal message.
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