I've been meaning to ask a question, and I am glad you brought this subject up. I was really surprised when my lyme tests came back positive, as I had received enough rejection prior that there were no Lyme cases in Texas (we now know different)
But even if I was not infected with Lyme, I was sure that I had some kind of chronic infection, possibly not yet discovered, but nonetheless, still a very real illness for me.
I understand the search for co-infections, but I wonder how the diagnosis is made to differentiate between neuro lyme and "other" lyme. At first I just assumed that my case was more of a "chronic, late stage Lyme", but now as I read more, I seriously think that my case may be different than some of what I read.
Most of my symptoms are neurological, hence why I probably received the MS diagnosis first. My eyes are very blurry now for a year or more. I have these "spasms" on the right side of my head that works up from the neck area to the crown, lasting 30-40 seconds, but happening sometimes up to 15 times per day.
And the icing on the cake is the Central Sleep apnea diagnosis, showing that my breathing ceased 1100 times that night, without the burden of any obstructive cause. I did not snore, and was advised that I need to get a neurologist immediately, although after seeing three neuro's now, none will acknowledge that this could be part of the Lyme. None of these doctors would take me, saying that Central Sleep apnea is way above their expertise and I have to look elsewhere.

I know that most all lyme patients suffer from memory loss, and I guess the sleep issues are what bother me most. It is almost impossible for me to wake before 3 or 4pm and that is after taking a large dose of stimulants to kick start me. I sleep at night with oxygen, but otherwise, stimulants are the only protocolfor this form of apena. The CPAP didn't work for me.
I am only awake maybe 3 hours per day, which you can imagine with the neuro issues, I don't get anything done. To even come here and post is a major task. To email friends has become almost impossible to work into those few hours.

I was bit again late last summer. Got verry ill was told should be in hosp. ALl signs of encephalitis.

My arm where bit sported large infection where bit & alot of swelling.I do swell from mosquito`s. Just had bite from 1 3 weeks ago still swollen & infected.

Doc.did not see till months later. He said I probably had WNV. It was not a tick.

My opioion thought it just stirred up lyme co-infection. Do not see a true LLMD. Just 1 that thinks he is. All I have to choose from .

So I could have had it. He wanted me to see ID doc at USF. None were Lyme Lit or knew about WNV on my plan.

All I know since last bite & being so ill have went down hill since. Alot worse, hardly get out, constant nausea since bite even with treatment for.
So if it was WNV it aggrevated my system for sure... Should be over it in few weeks.

That is about all I know on so little sleep this week.

I had asked the question since there have been a number of west nile cases in the region. Some of these have been fatal, particularly in cases of pre-exisitng neurological disease such as MS.

I was hoping that someone would respond that "I had it and it just made me more sick but I recovered.." of something lke that. I still fear for the worse given the lack of responses.

lymielu,

One the issue of lyme vs other neurological diseases. There are a LOT of other diseases, most of which are as bad or A LOT worse than Lyme. You can find a lot of support groups on the internet for a lot of these diseases... the stories you see here on lymenet are upbeat by comparison. While lyme is bad and very debilitiating to some, the big difference between these other diseases and lyme is that lyme can be successfully treated in a lot of cases (sometimes requireing very agressive treatment). Whereas many others cannot.

If you see a neurologist, mention to him/her if he knows about or might be interested in hearing about infectious neurological diseases that he can acutually CURED. This is a word that is rarely used if ever by neurologists and one would think that there would be some interest in the posibility. If he wants to here more, get a copy of one of the many published account of neurologic presentations of lyme, or even a group of abstracts.

What tests have you done, any imaging? Prior to figuring out that I had Lyme, I spent gazillions of dollars on every test know, including the newest brain imaging proceedures.
From this, at least a number of things could be ruled OUT, unfortunately none of them was diagnostic for Lyme, as is the case for most neurological problems and as a result, nothing could be ruled in.

The best that one can hope for is to come up with a probable list of DX and then locate experts for the diseases in the DX differential. This is what I did.

Unfortuanately Lyme was not supposed to exist here and as a result was always a very low probability diagnosis and did not even get looked at until every other option was exhausted.

Don't forget that ticks carry a lot of different things, including different strains of lyme and I am pretty sure, some still to be discovered co-infections. It appears that different strains also can produce different types of symptoms as witnessed by the european vs NA strains.

The unfortunate situation is that It doen't look like anybody really understands these bacteria and/or viruses and their effect so all we can really hope for are good clinicians with as much treatment experience as possible. Fortunately there are a few around.

Also interestingly enough, veterinarians are pretty good at figuring some of these weird diseases, mainly because many of these diseases travel from small animal to man in a stepwise progression so they see them first, sometimes many years earlier. Ask a animal neurologist how long it takes to treat a CNS infection in a dog and they will likely tell you it is months of very aggresive treatment. They will also likely tell you that treatment may not work at all.

In the years prior to the people such LLMD's willing to fight the system and take on this emerging disease, a lot of us would just die off....before our time.

Just another statistic of no real consequence... and to some in the anti lyme treatment movement just the hasty elimination of another burden on society (or at least the bottom line).....

PS: If anti group where veterinarians they would say put the animal to sleep, it is cheaper. These anti lyme guys are doing the same thing by inhibiting proper treatment....