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04/11/2011 03:10 PM

Newbie here....Question

nightnurse
Posts: 1
New Member

Hi Everyone......

Got a question here......

These are my symtoms....

I am a 34 yr old nurse.....healthy, and active....

9 months ago, I started having tingling in my toes...It slowly started progressing to both feet, and up my legs, to my knees....Then my legs started getting very weak.....They have gotten so weak now, that I cannot even work....My balence is way off, and I am very unsteady, holding onto things wherever I go....I have a lot of involuntary twitching.....muscle twitching....ringing in my ears

I have been worked up by neuro...2 spinal taps, MRI's,2 EMG's and lab tests...All my tests for lyme have all come back negative, including in the spinal fluid...They originally thought I might have MS or something along that line.....

Does any of this sound familiar to anyone? My legs basically feel like jelly, and I cannot walk for a long period of time.... They have tried me on Neurontin and Lyrica, both doing nothing for me.....

I am frustrated and need some help!

I live in the Boston area

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04/11/2011 03:37 PM
TaraT
TaraT  
Posts: 4164
VIP Member

Hi there night nurse! We have heard close versions of your story over and over and over again.

Thinking that lyme has been ruled out simply because of negative tests causes many people to chase their tails and get sicker in the meantime.

Steroids usually are given to treat MS so if they tell you that you must have MS because nothing else is showing up then say NO to steroids until you have been tested for lyme BY A LYME LITERATE LAB.

All other labs are called junk labs. There are only a few labs that have a good rate catching positive patients when others have found negative results.

Igenex is one of the best in my opinion. THis is the lab that most people get their lyme tests through when they have been educated a bit on lyme disease.

You can visit their website by doing a google search and then order their test kit. Have your doc draw your blood and send it off to Igenex in California by Fed Ex to get a good result.

Even then, igenex says they dont catch all positive patients..especially when they have had it for a very long time. MOre than a couple of years.

If this is a relatively new development then you may have good luck with your first test through IGenex.

I would do this FIRST before anything else if I were you. To be more sure it is not lyme or that it is lyme before I accept any other dx for any other disease since Lyme can MIMIC just about every disease out there.

http://igenex.com/Website/

Theres the link. My basic lyme panel cost me just under 300 up front and my insurance will reimburse me. But they dont take health insurance. From what I understand they will file your medicare for you though...

Good luck and welcome to the group! Dont hesitate to ask more questions if you have them. Feel free to browse and read older posts to glean as much info. as you can . There is a LOT of info. on this site Smile


04/11/2011 03:59 PM
GWB
 
Posts: 901
Member

nightnurse,

Sorry to hear about the symptoms you are experiencing. When you say all tests for Lyme have come back negative, what tests did you have to determine this? Spinal tap tests are not a reliable test for testing for Lyme disease. They are really of no value when it comes to testing for Lyme disease.

You need to see a Lyme Literate Medical Doctor (LLMD) who specializes in Lyme disease. Lyme disease is a clinical diagnosis. A LLMD will know if you have Lyme disease by asking you a series of questions and will do special testing, usually done by a company called Igenex. They specialize in testing for Lyme disease and co-infections that often come with Lyme disease.

The test you need is a Western Blot test. Although, this test is not always 100% reliable, it's far more reliable than the Elisa test or spinal taps.

Have you ever been bitten by a tick? If so, how long ago were you bit? Did you notice a bullseye rash develop after the tick bite? If so, you have Lyme disease. The bullseye rash is the most reliable indicator whether or not a person has Lyme disease, even more so than any test you could take.

The symptoms you described may or may not be an indication that you have Lyme disease. Yes, many people with Lyme have these symptoms, but the symptoms you describe could be many things. Lyme disease is called the "Great Imitator" because it can imitate nearly 300 diseases.

It's a very difficult disease to diagnose, and most neurologists, GP's and sad to say, even a good number of infectious disease doctors don't know enough about this disease to diagnose and treat it appropriately. This is why it's extremely important you see an LLMD, and the sooner the better. The longer you put off treating this disease (assuming you have it), the more difficult it is to treat.

I encourage you to find a LLMD in your area and make an appointment as soon as you possibly can.

Sorry you have to be here, but glad you found us. Hopefully you don't have Lyme disease, but if you do, you will get great support, encouragement and answers to your questions here from the many people who have experience with this disease.

Keep us posted and if you have more questions please ask.

Gary

P.S. I forgot to add this important link. Very good information here that will be helpful to you http://www.ilads.org/lyme_disease/about_lyme.html

Post edited by: GWB, at: 04/11/2011 04:14 PM


04/11/2011 07:06 PM
inkyblck
inkyblckPosts: 446
Member

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


04/13/2011 01:54 AM
Bettyg
 
Posts: 33573
VIP Member
I'm an Advocate

welcome nightnurse Smile

check your private messages left side for mass. llmds Smile

please post in LLMD REQUEST FORUM too which is shown in the welcome letter at top i sent youby pm; it's in my signature link too.

this way other mass. folks canchime ingiving you info who they go to/current vs. what i have here in iowa; a win-win situation. Cool

BETTYG, iowa leader

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