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

[vmd]

Wish you well Leslie at your appointment. I am having some of the symptoms you are having. Most recently I have experience profound weakness on my left hand (can't open certain bottles, etc.). This really frightens me as I can see the future in front of me now. In addition, I appear to be deteriorating rapidly. I am seemingly unable to do the basic everyday things with my hands (due to weakness) and the obvious atrophy I see in my wrists and forearms. I know that this is very characteristic of ALS. I don't know what I am going to do, especially if I can't finish this semester.

 

[pldo]

Leslie,

I understand that you are not feeling well! I hope that you get the answers you seek. Are the steroids working at all? Did the neurol say what else imflimation could be?

 

[ltr]

Thanks for all your support everyone. The visit today was a wash, as I kind of expected. Really, what can she say other than we have to keep the steroids going at least until January. She didn't want to do any of the tests that I haven't had because she basically doesn't think I'm that bad. I got a 15 second exam, with 5 seconds of push your leg against my hand, now push your arm against my hand......oh, your fine! How dare her tell me that I am fine. I think that's what makes me so angry, someone telling me how I feel. As much as I care about people and don't ever want anyone to feel bad, I think the only cure for this would be for the neuro to walk a day in my shoes......or any one of our shoes. Then let them tell us how good we are and that our symptoms are meaningless. The video of my fasciculations....well, she was interested in watching and she did see. Did she know what to say? No and said that fascic's are nothing to worry about unless there are other symptoms with them. Did I miss something here or did she? Am I not weak and experiencing cramping? Oh well, I'm in the boat with all the rest of you.....the wait until we have to crawl in the office boat. She was kind enough to say I need to see a rheumo at their facility and to set that up and prescribed Lyrica for the burning pain. Her NP told me later that burning muscles with myopathy usually point to something rheumo. Why didn't the doc just explain that to me instead of making me feel as if I was crazy and bothering her. I feel like I am begging for help from the docs instead of feeling like they want to help.

VMD - I know how scared you are, but you are so mentally strong that I know you will finish the semester. Find a way to cut all the corners you can. Find some happiness with the students. I bet there are a couple that you see potential in and enjoy talking to. I know you can do it, but like Mike said (quadbliss) the stress of his job was making his situation worse. Please, don't let that happen to you.

 

[vmd]

Thank you Leslie. With the help of God and individuals, such as yourself and the others on this board, it does help.

 

[Jamiet]

Lelsie,

You had a POSITIVE Lyme test. Your WB IGM was positive. YOu need to see a LLMD ok. YOu fit the profile very closely.......and with a Quest Positive IGM WB, you def. have lyme, which, if you do, the steriods are making it worse, right?/ IF the answer is yes, you need to get in to see a LLMD. Do you want me to find one for you?

thx,

Jamie

 

[Jamiet]

Lelsie,

You had a POSITIVE Lyme test. Your WB IGM was positive. YOu need to see a LLMD ok. YOu fit the profile very closely.......and with a Quest Positive IGM WB, you def. have lyme, which, if you do, the steriods are making it worse, right?/ IF the answer is yes, you need to get in to see a LLMD. Do you want me to find one for you?

thx,

Jamie

 

[brooksea]

Jamie,

Thank you for looking in on this forum. Thank you for trying to help others, even though you are suffering yourself. We need every kind of input there is to get to the bottom of these debilitating symptoms.

I hope to God you will be cured!

 

[Jamiet]

Thanks CJ,

If i can get one person better, that's a major goal for me.

I've researched alot of lyme patients, you would all be really suprised at how close some of the lyme presentations follow ALS, some of these stories you hear, are true. I don't know if that's what i have, but i start the rocephin tomorrow, we will know soon.

If this works, ceftriaxone is a treatement for ALS, why couldn't your hubby and all the others in here try it? I am spekaing to a guy named Derek now, called him on the phone. HE had 100% ALS, bad EMG and all and low and behold he had lyme too, started the rocephin, some parts are better, some are worse. The good thing, is some are better, we all know that doesn't happen with ALS.

There was a big study on the ceftriaxone and ALS and it was been shown to really help ALS, to the point, of reversing some people's ALS. It must be, mistaken lyme cases for ALS. The study is posted on the MDA's website (I think).

I don't want to give anyone in here any false hope, but, i'm just trying to find answers for all of us.....it would make my day to save someones life, your hubby, annmarie, leslie and the entire list of great people here...... We are all too good of people, i guess that's why we are strickened with illness, maybe that's GOD's plan...?

I am having my mediport put in tomorrow morning 0600, will have the first treatement of the rocephin tomorrow, then, each day after that, 4 days per week, 2x's per day, then 3 days off. Then following week, i double my dose, but still do it 4 days on 3 off.

Rgds,

Jamie

 

[ltr]

Jamie - the docs say I don't have lyme. I questioned them about it and was told that after a year and a half of being sick the IgG would be positive. The IGM is only for acutely ill people, not chronically. In fact, they said the IGM's would be negative. I think they checked for it on muscle bx too, but who knows. If they would complete my neurological workup with an MRI of the back and a spinal tap, I could find out for sure. But, my neuro is done testing. I am waiting to get into Johns Hopkins, maybe they will continue to test.

 

[Jamiet]

Leslie,

What part of positive don't they get. In fact, they say the IGM is positive more than any other and you are CDC positive.....how clearer can it get.

You need to find a LLMD and go see him.

YOu were tested by quest, which, does not specalize in lyme and if they came back positive, then you are def. positive. Also, don't you remember getting bit before you got sick? I mean, you said you had the rash, is that when you started feeling bad?

Go to lymenet.org and do some research, you will be amazed to find many like you who got better, most had to do Rocephin like i am, but you ask those people,,,,you will get several responses of people who have followed in our exact footsteps only to be 90 - 100% better now. It's controversial, but, it's real...real real...

And the issue is, most doctors blow it off. Look up on that site, you will find several people who tested negative, got treatement and got better....you have a positive test. What part of positive is not positive?

Email me your test again, i want to look at your positive bands. I can bring it to my LLMD next time i go, i go in two weeks.

Again, i'm not trying to give anyone false hope, but, there are several success stories there, real people responding and real stories. Some of them were to the point of wheelchair bound!

thx,

Jamie

 

[pldo]

Jamie,

How do you find an LLMD?

 

[Jamiet]

www.lymenet.org

In the "flash discussion board" there is a section "seeking a doctor". Put your city and state in and someone will PM you with a doctor's info.

 

[ltr]

You would really take that for me?! Now, that would be really great. When I checked into llmd they were really far away from me. My docs said the IGM's mean you have something acutely going on and that I would have to have IGG bands for being so ill. When I studied lyme I kind of got turned off by all the fanatics and thought that my docs were probably right. But, if I had a real doctor tell me it was pos. then I would pursue it. I will email it to you again. Have you had more than one dose of Rocephin yet? Do you feel okay with it? Hold on for the rough road!

 

[Jamiet]

Hi Jamie. Thank you so much for digging up the old posts and sharing them. My husband is having a lot of the same symptoms including night sweats. As far as I have read, night sweats aren't a symptom of ALS, right? He was hospitalized back in April but was never diagnosed. The doctors said that he either had a Tegretol reaction (given to help the fascics) or a tick bite. Whatever it was attacked his liver. He was given 3 days of IV antibiotics and started getting better. All of his tests for Lyme, Rocky Mountain Spotted Fever, etc. came back negative. I've asked his neuros repeatedly if he should be tested for Lyme again, and they say no. His spinal tap in the hospital was for meningitis. Should they do another one for Lyme?

His symptoms to date: 2 abnormal EMGs, right arm weakness, right shoulder atrophy, right bicep atrophy, fascis all over, severe muscle spasms all over after physical activity, night sweats, fatigue, urinary frequency, elevated cpk, all other blood work negative.

His doc called from UVA last week and said his last blood work was negative; GM1 and protein electrophoresis. I mentioned his hospitalization in April and how it seems like after that time he has gone downhill and questioned the antibiotics given then. The doctor said that he could take antibiotics for bronchitis or sinus infection, but if he ever needs to go to the hospital or have surgery to contact him, because there are certain antibiotics that they do not want him to have. Do you know what this could mean?

Any information or suggestions would be greatly appreciated. We are both very scared and feel we are getting the medical run around.

Thanks again.
Pam B in Va

What you do is find a LLMD, go on www.lymenet.org, get into the flash discussion part, in there, there is a "seeking a doctor" section. Someone will PM you a LLMD in your area, of not, post your request on the "medical questions" section.

YOu can get him tested at IGENEX, its $450 for the test he needs, but you need a doctor to sign the orders. Get your GP to sign them, you handle all the paperwork and mailing the bloood, this way, all he has to do is sign the orders.

Go to www.igenex.com get the 6050 complete lyme panel. It's the ELISA, IGG WB, IGM WB, DNA. If any of these come positive, if he has the lyme symptoms, he needs to be treated. You will have to find someone to draw the blood, 4 tubes, separate 2 of them in to serum. Send the 2 blood and 2 serum via DHL or FEDEX OVERNIGHT Express! The blood should be drawn on a monday or tuesday and shipped same day, this way the blood does not sit in a lab over the weekend.

This is the best lab according to all the lymies. They are just like the PALS, they know the ropes.

As far as treatement, you need to get him on IV Rocephin (Ceftriaxone), it's apparently doing well in clinical trials for ALS patients and it's the best treatement for lyme, so, you kill two birds with one stone. Your LLMD, you neeed to tell him you want to go straight to this, no orals!

FYI - I just started the Rocephin today, we'll see if i really have lyme.

Rgds,

Jamie

 

[Jamiet]

You would really take that for me?! Now, that would be really great. When I checked into llmd they were really far away from me. My docs said the IGM's mean you have something acutely going on and that I would have to have IGG bands for being so ill. When I studied lyme I kind of got turned off by all the fanatics and thought that my docs were probably right. But, if I had a real doctor tell me it was pos. then I would pursue it. I will email it to you again. Have you had more than one dose of Rocephin yet? Do you feel okay with it? Hold on for the rough road!

Email me your results, they were a little jumbled up last time, hard to intreprit. I will show them to him, if he says you need to see an LLMD, he can find you one, they all talk in a LLMD network around the nation. Not to say you have it, but is anything else working and has anbody else given you any answers, sometimes the obvious is the solution?

I'm ready, 1 mg / day of Rocephin today. I get this for 1 week. It's a low dose to start out, after 7 days, (2mg, 2x's per day total of 4mg / day) 4 days on, 3 days off...repeat..4 days on..3 days off, at least 4 months, probably 6 months or more.

We will see, but i ain't just going to sit back and wither away, i'm either going to get healthy fighting or dye fighting......until they tell me its' ALS, i'm fighting other things.

take care,

Jamie