Hello: I have had Lyme for over 20 years now, for the past 3 years it has been quite a struggle. I do deer fencing for my work, so I get bit a lot. Do some hard core antibiotics and probiotic at the same time to keep your gut healthy. Then get set up with a knowledgeable Homeopathic Doctor who can take you through a treatment program to get you organs healthy then take out the remaining Lyme(whatever bacteria they find). You may also want to try some vibrational healing therapy(Indigo). This is a new technique, the military had kept it under wraps for years, but now some doctors have it, it works wonders, all though you may get some Hex reactions from it.
Peace and Light to you, Rob
Google "Advanced Topics in Lyme Disease" by Joseph J. Burrascano Jr. M.D. read or download for free. It is a wealth of info
Peace
Hi, Very same situation with me but here are the facts:
Call IGenex for a free test kit 800 832 3200. Make sure you select the $470.00 test which includes Western Blot IGG code 86617.
This will reveal the chronic lyme bacteria if you have it.I was tested 9 years ago with the ELISA it came back negative and I was then diagnosed with Fibromyalgia and I simply got worse and suffered for 9 years. Now I finally got the test back positive for Chronic Lyme and am on my way to recovery. But be careful because you need aggressive antibiotic treatment. I started bicillin LA IM injections.
Also, please rent or buy the documentary "under our skin"
Peace
Hi, Very same situation with me but here are the facts:
Call IGenex for a free test kit 800 832 3200 . Make sure you select the $470.00 test which includes Western Blot IGG code 86617.
This will reveal the chronic lyme bacteria if you have it.I was tested 9 years ago with the ELISA it came back negative and I was then diagnosed with Fibromyalgia and I simply got worse and suffered for 9 years. Now I finally got the test back positive for Chronic Lyme and am on my way to recovery. But be careful because you need aggressive antibiotic treatment. I started bicillin LA IM injections.
Also, please rent or buy the documentary "under our skin"
Peace
You just described the story of my life. Everything you said I have and I have been living with for the past year and half. Did you ever have a spinal tap? My blood test were inconclusive for lyme and positive for Erlichia so they put me on anti-biotic for a month then was negative but still had migraines months later I started developing all your symptoms including muscle spasms, fatique and fainting spells as well as tackycardia. I had the feeling like the back of my head was on fire and my head was going to explode but I had a normal temperature. I had every test in the world done and all came back normal so they did a spinal tap. They did a DNA test on my spinal fluid but the results take 3 months and it came back positive for Lyme Disease. I also developed Vasovagal Syncope wich was made positive after a tilt table test. My doctors believe that the Lyme Disease attacked the Vasovagal vein. I think you should get tested agin if it still comes back negative ask to get a spinal tap but they are painful and risky.
I too have been suffering with all of the same symptoms for a few years. Doctors can not figure out what is wrong with me. My entire family has been ill. We all got tested at an endocrinologist and we all have low thyroid, blood sugar problems and poss. adrenal problems. She thought is was a great idea to go to a lymes specialist to have it thoroughly checked. She has never seen everyone in one family have the same conditions at the same time before and said lyme can cause all of our conditions. Here is a web site to go to find a good lyme specialist.
flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_pm;d=K;t=00109402
Many lyme specialists do not take insurance. If you want to know why and more about lymes disease I think you should all watch the movie documentary Under Your Skin. It will explain everything you need to know that your doctors won't tell you. It is a must see if you are feeling ill. Message me if you need more info.
Im 25 and have had all the symptoms listed on all of these postings. I have been going to doctors for years when symptoms have got bad enough. Everytime I had test results turning up negative. How convienient right. Anyways, about 6 months ago I started having symptoms that were affecting my head, making me dizzy, concentration problems, memory problems ect. I got really worried and started seeing doctors again. I had an MRI, CT scan, CAT scan, heart tests, and even a lyme test at the hospital. Everything came back normal again. Then I talked to a friend who's Mom had lyme, and found out her story was very similar to mine. So I got some information from her and went where she did. This place is the best in Wisconsin and has Lyme literate doctors. After seeing this doctor I was givin a Igenex Lyme test. 3 weeks later I had a positive test result. The moral of this story is that non Lyme literate doctors know nothing about it and you need to find a doctor that knows about this disease. Igenex is the way to go>
I was just diagnosed after having all of your symptoms for 10 yrs- I went to countless doctors and was misdiagnosed with everything from MS- to MG- to Lupus to doctors telling me it was "all in my head"...well- after going with my gut instinct- I went to a LLMD and after one blood test- (western blot) and one visit to this doctor- I was diagonsed- FINALLY !
You definitely sound like you have late stage-
I would find a LLMD in yoru area and demand to get a western blot blood test for lyme-
If I hadn't stuck to my guns and pressed for this- I'd be dead right now.
GO TO A LLMD....(make sure he/she is really good at what they do and are not afraid to treat you)
God Bless ! And get to a doctor !!
I have all the same symptoms since April and had a lumbar puncture Thursday and waiting on the results. I have hypercalcemia and they can't figure that out either. I had brain mri,ct scan, mri of lumbar,thoracic and cervical spine. Ct scan of stomach and abdomen, full body bone scan and thyroid scan. They show degenerative joint and disc disease with 3 lumbar bulging disc and 2 bulging disc in the neck. I have developed bad nerve problems. # pinched nerves in my neck, L5 and S1 nerves pinched, both ankles,both elbows and bilateral carpal tunnel. I head to Mayo Clinic November 10th.
There is a test called the MELISA test throughout Europe,,, and I belive you can have this done in US for Lyme Screening that promotes to be far more accurate than other tests
http://www.melisa.org/borrelia-lyme-disease.php
Regards
Peter
[email protected]
You all should get evaluated by doctors(LLMD) that specialize in Lyme Disease.
Go to the Lymenet.org website and read into the discussion boards. You can seek out some good resources & find doctors educated in the treatment of Lyme as most general practice doctors are not.
Dave
Don't let them tell you it's in your head if the test cames back negative. The test may very well be negative whether you have it or not.
Wow. I have almost all of those same symptoms. I was just tested for Lyme Disease, and am waiting on results. My cousin was just diagnosed with it as well. I have had just about every test imaginable. Ruled out MS, Rheumatoid Arthritis, Lupus, Hepatitis, etc. I am hypothyroid, and have 4 children, so my docs all want to tell me that any symptoms I have are related to these 2 facts.
Good luck. I hope you get some answers!
I know what you are saying. I have not been tested but a member of my faimily has. They also came up negative, however we were at a doctor that knows lyme and she ran other tests with this and said due to the results and symptoms she has lyme. since then I have been told it is chronic lyme disease. Joints (all) swollen has trouble writting, nausea, dizzy, weird rashes. feet hands cold. Hot and cold flashes, fevers, migraines.Extreme fatigue and concentration problems. Has pain all the time medication doesn't seem to help. There are doctors that understand and deal with lyme. Of course there are the ones that make you feel like an idiot. Like patsy said all in your head.
Usually all boodwork is normal with lyme. That's why doctors don't believe people and say it's all in our heads.
does anyone have late stage lyme with normal routine blood work - i.e., kidney, liver, thyroid, full chemistry...?? yet very ill to the point of being bedridden with lyme??? if so, has any doctor ever explained how this can be? Desperatly wanting to understand this and wanting to not have to explain myself to doctors who look at normal blood work and dotn believe i am really ill. Please help!!
Wow...does this ever sound familiar to me...I've had all sorts of symptoms for a couple of years. They did test me for Lyme when I was in the hospital...not sure what kind of test..but it came back neg...I wonder if I should ask my Dr for the other kind of test....thanks
Yes it does sound like lyme, but late stages of lyme. I went through some of the symptoms you have and never tested positive to lyme until after I had finished my antibiotic treatment. My doctor had no idea what was wrong with me. In the beginning I had pins and needles in my feet and hands. Then I had a headach that would kill a moose, the pain went across my eyebrows and down the side of my face and into my jaw. That lasted about 3 weeks, no treatment. I had visual aurora, that passed, still no treatment. I had bells palsy for a week, that passed, still no treatment. I lost motor skills in my left leg and did the toe drag for about 3-4 days. The whole time I'm doing research on Lyme disease online. I kept telling the doctor I thought it was Lyme. But because all test were coming back normal and or negitive, he wouldn't buy it. Finally he gave in and put me on a antibiotic regiment. That was 4 years ago. And believe it or not, I'm having some of the symptoms again. Here we go again. Just thought I would share some of the symptoms I had, maybe they'll help.
Yes, they automatically assume "it's all in your head" if there isn't objective evidence. You may want to visit lymenet dot org and post under seeking a doctor. You could post what you posted above and see the responses you get. There are 2 lyme doctors in western PA. Don't know what part you are from.
Thanks so much for your comment. I have not had the Western Blot yet. My Neurologist is convinced that the ELISA is accurate. So, I am in the process of finding an expert who is willing to really look at Lyme as a possibility. I have found that if doctors don't have an immediate answer, they think that you are making things up. Very frustrating and upsetting. I have heard that the Igenex lab has the most sensitive test. Thanks again. I appreciate it.
Sounds exacty like lyme to me. The ELISA is a worthless screening test for lyme. It's very inaccurate. Have you had a western blot? If not, one from Igenex labs would be best. Absolutely, the antibiotic could affect the results of a lyme test. There are lyme-literate doctors in your state since it's endemic. Most general physicians are not educated about lyme. That's why it's important to see a doctor who knows about it and how to properly treat and test for it.