For those of us in unknown land...read this...

[Midnight]

Hi Jamiet,

I think you have your port in now, so I hope you doing well with it and you can still hug those kids with it in. I have had many friends with ports and it took them a few nights to get used to them, depending on where they put them (chest, arm..). After a few nights they slept better and i know that this is the road to getting better, so think of it as a means to a new beginning

I looked it up & the ticks we took off our dog this year were all deer ticks. I had no idea they were the carrier of lime. I don't remember being bit, but I am the type of person that reacts to every type of bite, so Id never known the difference. To me, the photos look like my typical mesquito bite, spider bite, etc..and I'd have never thought to go get antibiotics for a bug bite (what a joke) especially living in the west. They don't even talk about lime out here. I got blood tests done this week, 3 were for lime. It is so confusing...I am wondering what are the tests that should be run for lime specifically? I have so, so many "duplicate" symptoms like many of you. Is there any down side of being treated for lime or for any of the other curable disorders for people that have so many duplicate symptoms. In a matter of a couple weeks I have watched my body do so many crazy things. I am now having a real tough time with the face, neck "fasiculations", among others, and i think they may be wearing out those muscles so they are just tired..so i just feel like I cannot get enough air or something (I don't even know if that is a normal symptom), especially at night and I just wonder how I am going to wait out the weeks before the friggin (specialist) doctors can fit me into their busy schedules. It is so hard because I know my poor hubby is so sick of hearing it, so I am trying to put on my happy face, and my since my blood work is coming back clean....what do I say...i just prop myself up at night and pray my lungs get oxygen... So, my real question...geeze..sorry...was...what are the specific lime tests? yikes..

 

[Jamiet]

The Western Blot is supposed to be the holy grail test, but there is the ELISA and DNA PCR. There are two types of western blots, the IGM and IGG, cdc criteria are 2 + bands on IGM for pos and / or 5 pos. bands on IGG. If either one is pos in conjunction with symptoms and if esp. if ALS is ruled out, it's reasonably certain it may be lyme.

Some people never show positive. I had a positive ELISA, i just hope it wasn't a false positive and my first WB's were negative, but really borderline and had alot of IND's, which is really a weak positive

I guess, i would not have really headed down that road, but since, 5 neuros, 1 internist and 2 GP's have ruled out ALS, i have to try something and this was the first remotely thing Positive since all this crap began, so....

Lyme is so controversial. If you do have ALS, most of the time, oral antibiotics will speed up the process, so be careful. Rocephin is in clinical study for ALS and may help. I am on that now. I did malarone and zithro and i was sick as a dog, which was supposed to be good, called a herx reaction.

I just can't sit here and wither away, i talked to my internist today, he told me i didn't have it, but the lyme specalist said i did. I had 34 of 38 symptoms of it and 3 of the 4 i didnt' have were for women. I told my internist, that, if that's not it then he needs to tell me how to get better.......that, no one except the LLMD has given me any answers....i asked him what would he do in my situation?

i'll know soon enough if this is working, i'm not convinced on the lyme, esp. with my bulbar symptoms. Houston methodist ALS clinic ruled out ALS, the ALS spec. told me with 110% certainty....interesting, just before, my reflexes were off the charts, i have jaw jerk, tongue rippling and a whole host of other ALS symptoms.

hang in there....

rgds,

jamie

 

[TomR1972]

Jamie Bulbar

Jamie,

What bulbar symptoms do you have?

I unfortunately have noticed the back of my hands are wrinkled, they look like old man hands now. They sometimes have groves that are in line with my knuckles and I just noticed groves on my top of my feet as well. I have an overactive gag reflex that comes and goes but I don't bite my lip anymore than I ever have. At times I feel tongue tied but not often and it seems to go back and forth. Everything I read on ALS is so back and forth yet they say nothing is back and forth with this disease, so frustrating. Another day walking, talking is another good day I guess. Never thought I'd have to live day to day hour to hour.

Good luck to you Jamie, we are all pulling for the best.

Tom R

 

[Jamiet]

tongue twitches, tongue scalloping and what i call atrophy, really bad jaw pop and i can hear it ticking when i lay on a pillow and close my mouth

no "real" trouble swallowing, but i do choke on liquids about once a day or so

i also have facial / jaw wasting or "shrinkage"...?

we'll see ....

like i said i'll either live or dye fighting.

 

[kman543210]

I too am struggling with the whole Lyme vs. MND thing. I am currently seeing an ALS specialist who says she's pretty sure I don't have ALS. She notes that she sees "chronic" reinnervation but no evidence of denervation. My entire illness started 3 years ago coming home from a camping trip in MT/WY. Started with severe wooziness/disconnected feeling that never went away and loss of appetite.

January 2006 is when the muscle weakness in my legs started, suddenly too. I was driving home from work and felt this wierd sensation in my right leg, almost like it was going numb or something. As soon as I stepped out of my car, I was limping. First EMG in Feb 2006 showed something abnormal, 2nd EMG in May 2006 didn't show any abnormalities (muscle biopsy clean). I started to have to walk w/ a cane and developed swallowing difficulties in Sept 2006. 3rd EMG in Nov 2006 showed abnormalities, then all subsequent ones. The only tests that have come back abnormal now are the EMG, modified barium swallowing, and reduced pulmonary function FVC.

Western Blot showed multiple positive bands but not enough and right ones to be considered positive test. Just got a CD-57 test done recently, and it shows 20 which supposedly shows highly active infection. I am on Primaxin, Azithromycin, and Flagyl now, so we'll see how that goes. I am going to the Mayo Clinic this Wednesday, so maybe they'll be able to provide answers. I feel the same way though that I have to do something and can't just sit around waiting like they probably want me to do.

 

[Jamiet]

Look up your symptoms on Canlyme, you fit the profile, esp with the wooziness and "disconnected feeling" .....classic lyme symptoms. I wouldn't be saying that if you hadn't gone on a camping trip and this all starts right after.

You need to get OFF the orals if you can, your presentation, based upon the people i've spoken too will make you worse, you have an ALS type presentation. You need to get on IV Rocephin, it's the wonderdrug for lyme with ALS presentation. I've spoke to several people, including one of the old moderators from a lyme / ALS forum, she told me, she only knew one person who got better on orals with ALS presentation of lyme, that, everybody, including her....it was the Rocephin that saved her life.....

It's interesting...but...these are real people, etc.

YOu need to find a doc to be able to convince them for the Rocephin.

Are you seeing an LLMD?

Post the results of your West. Blot, only put the positive bands, like:
IGM WB: 30++, 34++
IGG WB: 25+, 30 IND (+/-), 41+++

I would be interested to know what yours looks like. Also, where was it done?

rgds,

jamie

 

[ltr]

Kman - I have had symptoms similar to yours, the disconnect and woozy, decreased pulmonary function tests and FVC. Lyme doesn't happen quick like that, though. In fact, if you had a lyme test right after the tick bite it wouldn't show. It usually takes a few weeks or months to sink into your system. I hope, though that the treatment works for you. My neuros are saying that they think I had some wopping viral thing attack me and then it caused myopathy. Many viruses and retroviruses, infections, etc. can settle in causing neuromuscular problems. These, too, would explain your symptoms. Please let us know how things go for you. Mayo will probably give you good answers. Good luck.

Jamie - check out this article that was in the newspaper where I live.

http://www.stargazette.com/apps/pbcs.dll/article?AID=/20070909/LIFE/709090358/1035

 

[Jamiet]

Ok:

Kman - I just realized last night, my CD 57 score is a whopping 31...., so, i'm about in the same boat as you buddy. I have the breathing issues to. They come and go, which makes me think it's not ALS. I mean, if it were ALS, to me it wouldn't have been on and off for 9 months now, it would have been downhill. They all say, the CD 57 is only marker, but, i have again, done alot of research and read about 300 postings

(my wife fussed at me for two days for sitting in the computer room at home, glued to the computer....i'm on vacation btw guys...lucky me...huh...on vacation researching my disease whatever it is...some vacation.)

This CD 57 means alot, just as all the other test, i would say, about 95% of the sick people, who have lyme, have a low CD 57, very low.....like us....interesting huh. It's def. not a "test", but a marker for how you feel...welll...duhhh....i feel like crap.

So you see, there are say, 5 test for LD: ELISA, CD 57, WB (IGG and IGM) and PCR. There are alot of others, but these are the main and NONE of them are 100%. Well, just look at the test for ALS...hmmmmm......i would say maybe 50% at best......OK, now you all have reasoning to BELIEVE a little bit and maybe experiment a little. Don't just sick (this was on purpose) back at home and wither away guys. BTW, i've got a positive ELISA, CD57 and a very bordeline WB....with band 31 and 34 positive. These are the Kda that make the lyme vaccine....hello again...

My story is adding up to the classic stories that i posted here at the beginning. I have to try and i have forced my doctors to go to the Vitamin R they call it (Rocephin). As you will read in the beginning, it's the wonderdrug, if your going to get better it will be on this. Now, time will tell. The first 4 days, not really much change except, my reflexes seem a little less active and for some strange reason, my quads (both of them) which were really really really really really hurting in the mornings to the point my wife had to rub them every morning all of a sudden have not hurt really for the last two days. I stopped the rocephin for my 3 day break, start back Wed morning.

Like i said, you never know unless you try. One of us could be one of the success stories i posted on the 1st page of this article.

So, leslie, you told me you remeber a rash, then, you get a positive WB test, the "Holy Grail" test............then, the doctors tell you well, you had some real bad type of virus that caused all of this..........hello....aren't those doctors at least thinking a little? And i've PM'ed about 15 people with lyme and stay on lymenet a few hours a day talking in messages and i have really not heard of many having seizures. I can ask the question there and see the responses we get. LYme is different for everybody. You can see here, for some, it is muscular and MN problems, for some it's brain, for some, it's dibilitating authritis, for some, it's.....myopathy?.......or for some......they just don't know what the hell is up.

For me ,it's one of three things: 1) Untreatable 2) Bacteria 3) Virus. I'm going to fight #2 & #3, if it's #1, we will find out in due time.

rgds,

jamie