Re: Re: Visit with the neuro-opthamologist

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Tony may be right. If you don't try to get an objective evaluation without prejudicing the docs with your views, you might as well go to the psych. Assuming all your problems are stemming from lyme is a very big leap when there are all kinds of bacteria and other possible causes for your symptoms. Personally, the guy who said you may have a blocked passage or tube or something to that effect sounded like the only guy with 1/2 a clue who's willing to look at a variety of possibilities. Did he make any other suggestions besides comparing the 2 MRIs? Or is that step #1? penny p.s. Why did you mention UCLA in your post again? I'm totally confused on that point. Still, I'm interested (regardless of who recommended them) if he named someone in particular or just "UCLA"? I'm always being told to go to "UCSD" which is considered a hotbed of

medical prowess...naturally it's a huge joke. pjeanneus <pj7@...> wrote: He didn't bring up UCLA, my doctor here in Vegas suggested that. I went to this specialist in PA instead. So now he encouraged me to get to a tertiary care center etc. But first I will get the first MRI and get the neuro here or the radiologist to compare the two. I don't think it will reveal anything. I don't think I am going to get a diagnosis from any of the neuros

including the one I just saw. I'm going to have to continue to do this on my own.I will get a babesia test run at a new lab at my expense. Then I will get my doc here to retreat the babesia IF it shows up. Meanwhile I will cut the Diamox pills in half and take half a dose to see if that relieves symptoms. Also, I will continue to work on weight loss - assuming it is intracranial hypertension caused by Lyme infection in the brain - weight loss should help relieve the pressure no matter what is causing the poor spinal fluid flow.I will continue to see the chiropractor. Whatever he is doing - it is the only thing working. Can't knock what works.a>> I think he's right. You can go to lyme docs for lyme. You sould go to someone who will try to dx you objectively without any preconceived biases.> > What docs did he say to see? Did you get specific names, or just

"UCLA"?> > penny

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While most ENTS are pretty useless for dealing with chronic infection, you should see one just to get your sinuses scanned. I know I've told you a bunch of times but I'd only had 2 sinus infections in 20 years, and yet my scans told a very different story, ...fully diseased sinuses. Sinus symptoms aren't necessarily what you think they are. I only started having sinus symptoms AFTER I had the surgery last year, which just goes to show, your body can wall them off so well that you'd never guess there are bugs in there making you sick. I have constant headaches now too, and the frequency of my migraines has increased tremendously. The headaches are definitely connected to and triggered by my sinuses, but you would never suspect I have sinus issues by looking at me. I don't sound congested or nasal, I don't have runny nose or eyes. No doc ever guessed I had sinus issues. Only by chance and having

a jaw CT scan did the oral surgeon see the infection in my sinuses. You need to check them out. A CT scan is an easy thing to do. If you don't, you could waste a lot of time and effort needlessly, if it turns out your sinuses are causing your problems. penny pjeanneus <pj7@...> wrote: I didn't particularly asume it was Lyme. The neuro-opthamologist in PA said that the white specks were either MS, lupus, Lyme or

atherosclerosis. He also suggested I see an ENT to see if my eustachaian tubes are blocked.HOWEVER, if you put together the pieces, damaged vestibular nerve,nystagmus, severe ongoing vertigo, dilated pupil in the last 2 months with decreased vision - I don't see this as TMJ or a blocked eustatian tube. Especially I don't see this because I have NO congestion, no signs of any sinus infection, no hearing loss, none.Two doctors I saw here in Las Vegas are VERY concerned that something is VERY wrong with me. They suggested UCLA where a team of doctors would look at all aspects of my case. This is what the PA doctor agrees I should do - not that anyone likes UCLA - just that no one has a clue what is wrong with me, and they want me to go to a tertiary care center.So I am getting more and more angry - not my usual frame of mind. I don't have tension headaches or TMJ. I don't have a blocked eustacian

tube. I don't know what the bright spots are in my brain or why I have nerve damage and yet the backs of my eyes are completely normal and healthy. MY HEAD HURTS 24/7. I can't think, and I am very depressed from the constant pain and brain dysfunction.I was feeling somewhat better the past month while I have been on Valtrex. Today I took a half dose of Diamox and I feel like crap - very bad again. This leads me to think it is Lyme - either borrelia or babesia or ??? I don't have lupus or MS. Clogged arteries in the brain don't cause nystagmus, vertigo and vision loss.Meanwhile I plan to do everything the PA doctor suggested BEFORE I travel off to UCLA or anywhere else. Hey, I might try hyperbaric oxygen. a Carnes>> Tony may be right. If you don't try to get an objective evaluation without prejudicing the docs with your views, you might as well go to the psych. > >

Assuming all your problems are stemming from lyme is a very big leap when there are all kinds of bacteria and other possible causes for your symptoms. Personally, the guy who said you may have a blocked passage or tube or something to that effect sounded like the only guy with 1/2 a clue who's willing to look at a variety of possibilities. Did he make any other suggestions besides comparing the 2 MRIs? Or is that step #1?> > penny> > p.s. Why did you mention UCLA in your post again? I'm totally confused on that point. Still, I'm interested (regardless of who recommended them) if he named someone in particular or just "UCLA"? I'm always being told to go to "UCSD" which is considered a hotbed of medical prowess...naturally it's a huge joke. > > > > > pjeanneus <pj7@...> wrote:> He didn't bring up UCLA, my doctor here in Vegas suggested that. I > went

to this specialist in PA instead. So now he encouraged me to get > to a tertiary care center etc. But first I will get the first MRI and > get the neuro here or the radiologist to compare the two. I don't > think it will reveal anything. I don't think I am going to get a > diagnosis from any of the neuros including the one I just saw. I'm > going to have to continue to do this on my own.> > I will get a babesia test run at a new lab at my expense. Then I will > get my doc here to retreat the babesia IF it shows up. > > Meanwhile I will cut the Diamox pills in half and take half a dose to > see if that relieves symptoms. Also, I will continue to work on > weight loss - assuming it is intracranial hypertension caused by Lyme > infection in the brain - weight loss should help relieve the pressure > no matter what is causing the poor spinal fluid

flow.> > I will continue to see the chiropractor. Whatever he is doing - it is > the only thing working. Can't knock what works.> > a> > >> > I think he's right. You can go to lyme docs for lyme. You sould go > to someone who will try to dx you objectively without any > preconceived biases.> > > > What docs did he say to see? Did you get specific names, or > just "UCLA"?> > > > penny>