Hi NightNurse, I am sorry to hear about what you are going through ...
What were the results of your MRI ???
Lyme is usually ( not always ) unilateral, or on one side of your body ... This is not written in stone, however, lyme tends to be one-sided ...
You could have bartonella, or, any combination of lyme, bartonella, babesia, rocky mountain spotted fever, etc ...
Only about 2% of spinal taps show a positive lyme result in patients who ARE positive ...
Here is a story I cut and pasted a while back ~ I'd post the link, however, it was a newspaper article and has since been removed ~
It tells of a vet who had all the symptoms of MS, and the trigger was bartonella ( it is long, but worthwhile reading ) :
What if you were struggling with a neuromuscular disease that left you pretty much unable to walk or work and kept getting worse, even with treatment?
And then, through an incredible series of coincidences, a diagnosis of a degenerative neuromuscular disease meets up with a bacterium that shows up on a blood test and suddenly your life is handed back to you?
A year ago, local veterinarian John Barnes was facing the possibility of spending the rest of his life in a wheelchair as his body degenerated. He was unable to walk with more than a shuffling pace and found it difficult to work.
It started one day in December of 2004, he said. I was the only one in the house and I woke up about 2 or 3 in the morning with fever and vomiting and thought I had food poisoning, he said. A thermometer pegged his fever at 103, though he said he thought it might have gone higher.
I took a shower and I felt like an octopus on the land, he said describing the weakness accompanying his sudden-onset illness. I felt like I had no bones.
And from that point on, things only got worse. I was a jogger and had been for years, he said. I was jogging and noticed when I went around the third lap of the track, my left leg started to trip a little bit.
The next week or two, it was the second lap. I knew I had a problem in one of my neck discs. I thought it was related to that.
He talked to friends who were doctors and they told him he probably had some kind of virus and he should get over it in a couple of months.
But the problem didn't go away. It just kept getting worse. My neurology friends said we better do some testing on you and find out, he said.
An MRI and spinal taps were done. It was a fairly clear-cut picture that I had MS.
Treatments for multiple sclerosis were started. We started the typical MS protocol which is interferon shots, said Barnes.
With the interferon, he was having relapses about every six months, something typical with MS. Interferon, he explained, is a maintenance drug for MS, but not a cure.
Then in July 2005, he was talking to a friend who is a world-class veterinary internist at Texas A&M University at College Station about an oncology case they shared.
Barnes said his friend was unaware of his medical condition.
She asked how I was doing. I said you know how it is with MS. You have your good days and your bad days, he said.
I started talking to her about it and I made the comment to her that I'm not balking at the diagnosis of MS, but I'm exposed to so many weird things, I would like to know that's all I have.
He said his friend agreed with him and said his timing was perfect because she had a friend who was doing a study.
She gave Barnes an e-mail address for Dr. E.B. Breitschwerdt, co-director of the Vector-Borne Disease Laboratory at the North Carolina State University College of Veterinary Medicine in Raleigh, N.C.
Breitschwerdt has been working with something called polymerase chain reaction, or PCR, testing which can be used to detect and diagnose bacteria by looking for genes or portions of genes in a patient's sample.
The advantage of PCR testing is that it can be used to amplify any gene that had been identified, speeding up the identification process.
Breitschwerdt also called Barnes' timing perfect and agreed to use him in his study.
He drew Bartonella out of my blood, said Barnes, explaining that other types of tests can show that you've been exposed to Bartonella, but not that you currently have the bacteria still active in your body.
Typically, Bartonella is self-limiting, he said. When he drew it out of me the first time, he was working with a Duke University infectious disease guy.
Dr. (C.W.) Woods was not excited about me being positive, but said he would test me again in a couple of months. He tested again and it was there again.
Barnes said they wanted to test the second sample to find out what species of Bartonella it was since there are at least a dozen different species of the bacteria.
Then they lost my sample and a bunch of other samples. I was with my neurologist and they were doing some IV-IG therapy and I was undergoing that.
Barnes said the next round of testing his blood for Bartonella had to wait until he finished the IV-IG treatments.
Another couple of months go by and they take another sample again and, sure enough, I'm positive again, he said.
This was about April 2007 that Dr. Breitschwerdt saw that my sample was positive, said Barnes.
He said the sample turned out to be Bartonella henselae-San Antonio strain. I said great, what do we do? He said we still don't know.
Barnes also has a cardiologist, Dr. Jamil Bitar. I was talking to him about it and he said I should talk to his brother Camil Bitar, who is an infectious disease expert in Louisiana, said Barnes.
Dr. Woods is not sure, but he's thinking about an antibiotic protocol.
Barnes talked about the protocol with Dr. Camil Bitar, explaining that it included taking two antibiotics, one of which could have a bad effect on the liver.
We started by the month to see how my liver was doing, he said. I asked him how long should I be on it and Dr. Bitar said until you're well.
That was the first time anyone had ever told me this might make me well and he said absolutely, said Barnes.
I was excited about that part of it, that this could reverse some of my clinical signs. Dr. Bitar agreed that I should stay on the drug as long as I could handle it. I just finished in August 2008.
Barnes said he saw changes in himself from the first month, however.
The first month, I could see a change in, believe it or not, the color of my toes, he said. He said his toes had been gray, but regained their normal color.
My fatigue slowly got better, he said. In September of this year, after he had already finished the antibiotic regimen, he discovered he could bring his right leg up past his knee without having to lift it with his hand.
By October he could move his legs as if he were jogging.
He shared news of his progress with Dr. John Shudde. Dr. Shudde said 'Simple pleasures are, indeed, the best!' said Barnes.
What Dr. Camil Bitar says, and I agree, is that Bartonella was the trigger for my MS, he said. They don't know what triggers MS.
He and I would both agree that I should not go so far as to say I don't have MS. Since they don't know what causes MS is, it's hard to say what's going on.
I think what we have is Bartonella-induced MS. I thank God every day that I'm getting better. I told myself if I don't get any better, if I can't jog again, at least I'm doing better in other things.
The potential for helping others with strange illnesses that could be related to Bartonella is obvious.
What's so exciting to me about this is that we don't know how many people are being undiagnosed or misdiagnosed, said Barnes.
At this point, he said, there is no way to know how many problems could be the result of Bartonella.
Post edited by: inkyblck, at: 04/11/2011 07:07 PM
removed entire bold quote, replaced it w/quotes for easier reading for neuros like me. bettyg, iowa leader
Post edited by: Bettyg, at: 04/13/2011 01:51 AM
I am NOT a "lymie" ~ I loathe that term ... I will not be defined by the vile bacteria that will very soon be out of my system ~ If you consider yourself a "lymie" right now, what will you have left when you rid yourself of the bacteria ~ nothing ??? ... Don't be a "lymie", be YOURSELF and fight it ...
...
And by the torrent on the banks thereof on both sides shall grow all trees that bear fruit: their leaf shall not fall off, and their fruit shall not fail: every month shall they bring forth firstfruits, because the waters thereof shall issue out of the sanctuary:and the fruits thereof shall be for food, and the leaves thereof for medicine. ~ Ezekiel 47:12
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