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Posted 5/23/2010 4:39 PM (GMT 0)
Hi I have been sick for coming on four years now, and just recently I was diagnosed with neurological lyme disease. The past four years have been a complete roller coaster. They thought I had possibly a heat stoke then meningitis, after that I got cervical dystonia, 70 percent nerve damage in my left inner, and I became extremely sensitive to noise, light, and heat. The past year I was also diagnosed with intracranial pressure and chronic fatigue. This is just a very shortened version of the past four years. Anyways, I am seeing a LLMD and I received a positive for lyme in my urine sample. However, not in my blood work or from my spinal tap. I am confused on what this means. All of my doctors are saying they don't believe I have lyme and that the urine test is very unreliable. However, my LLMD assured my that, that is not the case. This is all very new to me and scary and I was wondering if anyone had any input on why a positive from a urine test would be or wouldn't be reliable. Thank you
Posted 5/23/2010 5:53 PM (GMT 0)
Hi Shelly,

Welcome to the Lyme forum, sorry that you have the need to be here. I was not aware of a urine test for Lyme, the gold standard that most people seem to go by is the Western Blot blood test. I have been dealing with neurological lyme this past year, my LLMD has me on antibiotics. Do you have any memory of a tick bite or bulls eye rash? I personally don't remember getting bit and never developed a rash. What type of treatment does your LLMD currently have you on? Have you noticed any improvement in your symptoms? Hope that you are feeling better soon.

Gary
Posted 5/23/2010 6:27 PM (GMT 0)
Hi Gary,

Thank you for getting back to me. I never saw a rash or tick on me. However, when I initially became ill I was working at fire island during the summer which is known as the lyme capital of the world. As for my treatment I am on oral antibiotics, lots of supplements, and will be receiving bicillin injections a few times a week starting next week. So far I think I am starting to feel a little bit better, but it's really hard to tell. What is your treatment for neurological lyme. I read that with neurological lyme the treatment needs to be aggressive because of brain barriers which is why I think I am getting the injections and then looking into the iv treatment.
Posted 5/23/2010 6:43 PM (GMT 0)
Hi Shelly,

Last year, I had 30-days of doxycline, 30-days of amoxicillin and 30-days of IV-Rocephin. I took a break from abx for about 5 months and my symptoms got progressively worse. My neuro did all sorts of tests including MRI's, Lumbar Puncture, EMG and EEG. My new LLMD has me on Amoxicillin 3000MG/Day and Zithromax 250MG/Day. The first four weeks I didn't have any issues, but started feeling sick from the abx a few weeks ago. I have been doing the detox baths trying to get some relief. Did your MRI's or Spinal reveal any other issues?
Posted 5/23/2010 6:48 PM (GMT 0)
Shelly and betterhealth,

have either of you tried a full detox, including ph/oxegen/nutrition that does'nt involve 7000 pills?
Posted 5/23/2010 7:05 PM (GMT 0)
lymesolution,

Not me. I can only follow one treatment protocol at a time and right now I'm doing the LLMD-Abx. I will consider an alternative path if I am not successful with antibiotics.
Posted 5/23/2010 7:16 PM (GMT 0)
Yes I had a brain spec that showed patches which is very common in people with neurological lyme. However, the only thing the spinal tap showed was intracranial pressure (that is too much spinal fluid in the brain). As for alternative methods I am taking the lyme diet very seriously and I am on mega doses of vitamins and I am taking inflammacore as well. What are the detox baths?
Posted 5/23/2010 7:58 PM (GMT 0)
When I was hospitalized for lyme induced meningitis they put me on IV zmax for 45 days followed by oral antibiotics. I wouldn't chance your neurological lyme treatment to detoxs and herbal remedies. If you really want to attack the Lyme you could also go down to your local gyme and sit in a sauna each day to take advantage of the fact that the bacteria that causes Lyme dies at elevated temperatures. My doctor suggests I ride an excercise bike each day to raise my temperature and heart rate but in your state asking you to excercise is like asking a midget to play in the NBA, it ain't gonna happen. From my experience antibiotics alone you won't cure neurological lyme, you are going to need many of the suggestions that people in chat rooms like this make.
Posted 5/23/2010 8:14 PM (GMT 0)
Thank you Ovaltien that is very helpful. Yea I think the sauna and gym idea are prob out because I can't take heat or exercise right now. I was also wondering how long you were sick for before they started treating you, and what are the benefits in iv rather than injections?
Posted 5/23/2010 8:23 PM (GMT 0)
Hey Shelly,
My MRI's are clear however, my spinal indicated possible MS, so I will have periodic MRI's to check for lesions. The detox bath includes epsom salts, hydrogen peroxide and fresh ginger root. The specific directions are included in the topic 'New to Lyme - Start Here' , the first post at the top of this forum. I have been following the lyme diet too.. no simple sugars, alcohol, lots of water. I have backed off my vitamins to reduce the chance of having stomach problems. I'm suppose to exercise daily but I'm usually pretty beat by the time I get home from work. It's hard to exercise when you're numb all over and don't feel well. Prior to getting sick, I used to workout at the gym 3-4 days a week, now just walking is an effort.

I agree with Ovaltine, you do have to take the suggestions of others to try to fight lyme in as many ways as possible.
Posted 5/23/2010 9:50 PM (GMT 0)
Shelley I was sick for either three or four months before we found out what was going on. The sad thing is I live only about 45 miles from Lyme Connecticutt and it still took going to four different doctors before I found one that could help me. After I complained about neurological symptoms and terrible headaches I was having in the same exact spot everyday my doctor sent me to the hospital and told them to give me a spinal tap and to run tests for Lyme and all the possible coinfections. The spinal tap showed bacterial meningitis. Days later the tests came back possitive for Babesia and Lyme. All the tests missed the bartenellosis that would show up through these terrible stretch mark rashes two months later. When I left the hospital they put on the IV pickline so I could give myself the medicine. I think that is the benefit of the pickline over injections. Shelley the doctors appear to be changing your diagnoses regularly which tells me they may not be as experienced with Lyme as you need. The good doctors can tell you what you are feeling before you need to tell them. My doctor told me I had a scar on my leg based on the symptoms I gave him. When I asked him how the heck he knew that he told me, "the bacteria likes to hide in dead scar tissue." Do you have confidence in your doctors knowledge of this disease?
Posted 5/23/2010 10:08 PM (GMT 0)
Yeaaa I have been to over 40 doctors but 2 months ago I went to a LLMD he came highly recommended from a person who suffered 5 years with lyme. That is who ran the lyme test and knew what to specifically look for when my lyme test came out positive. He told me that all of the medical problems I have been having would make sense because lyme encephalitis can cause all of them. I am hoping I am moving in the right direction.
Posted 5/23/2010 11:02 PM (GMT 0)
Thats great Shelley, i'm glad you've found a doctor that can help you. Don't be afraid to ask your doctor for medicine to treat the symptoms. I take three tramadol's a day which helps my stomach and helps me with the weakness in the thighs. Without them I don't think I would be able to work a 50 hour week. This is a terrible disease and it's even worse when the only thing on your mind is the disease. I'm sure before you know it you'll have figured out whats going on and how to get your life back as close as possible to normal. Good luck.
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