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Old 03-16-2007, 07:32 PM   #1
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Pearlscale HB User
Tee Dee

Tronni
Have some questions. I know your not well yourself, so take your time answering these. Anyone reading this, all lyme doesn't progress to this. Get on treatment and beat lyme.

Have they connected your lyme and ms. Which came first? How long in wheelchair?

How long have you had symptoms, and how have they progressed over time. Do you see a lyme connection or do you feel they are different?

I have my new MRI results to take Monday to neuro. Just wish I knew what exactly I see. About 4 yrs ago, I had my last MRI. The neuro then showed me the film that had one brain picture on it. It had 3 distinct lesions and it was easy to see them on the large film. All the new ones are 12 pictures to a sheet. So its hard to be sure. I do see a lot of pin point white dots which I thought could be lesions, but don't want to jump to conclusions.

Have you ever had a blood test that measures damage to muscle. I had one (don't remember what they called it) Mine was over 300 and they said it should have been 100 to under 200.

Are you on the injections for ms. Which, how long, how do they affect you if on them. Have they helped? Have you ever been on steriods, have they hurt your lyme.

I'll stay positive and hold on tight to that rope right beside yours and pray real hard that medical advances will quickly be made in both lyme and MS.

Prayers....Marsha

Last edited by Pearlscale; 03-16-2007 at 07:38 PM.

 
Old 03-17-2007, 06:22 AM   #2
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Re: Tee Dee

I don't have any answers, but you're right those MRI sheets are hard to read. I have several sheets of MRI films. One doctor told me he saw something, but wasn't sure what it was. thought it could have been something due to prior trauma like seizures. The other said he saw nothing. Goodness gracious. Let's get together here. I showed it to a friend of mine who helps with neuro surgery and she said she thought my nerves looked pinched near my neck.

3 people 3 different opinions. Of course my friend can't read an MRI, but she's seen enough to know some things and said she didn't see any cancer or MS lesions. That made me feel great (this was before my Lyme Diagnosis). I hope you get some answers.

 
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Old 03-17-2007, 11:00 AM   #3
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Re: Tee Dee

Hi Marsha and CBS,

I've already been working on my reply for the past 45 minutes and my computer shut down - that's happened once before with an IP glitch. AARRRGHHH!

So I'm dizzy and need to get something to eat and am going to capsulize the best I can. I'll come back and type more later. First, to answer your questions about my MS and Lyme...

I had my first indication of MS in '82 when I was 27. I had optic neuritis and was put on a week's worth of Prednisone which cleared up the neuritis but scared the heck out of me - I had my first taste of depression and had two kids under 2 years of age and began to read up on steroids. This was before home pc's so we spent some time in the local library and that was where I discovered that optic neuritis is a prime indication of possible MS. The neurologist I'd seen hadn't bothered to mention that. I then began to read all I could about MS and it was being discussed a lot. I knew people who had been diagnosed with it and I was a basket case but had a family to raise and my husband and I decided to concentrate on my staying healthy and not letting the possibility of it take over our lives.

It was another 10 years before I had another major symptom - optic neuritis again but this time I decided not to do the steroids and within several days it resolved on it's own. I saw another neurologist who did a spinal tap and MRI. She diagnosed me with MS (of course she did - she worked in the MS clinic in a big city hospital 100 miles away from our town).

By then I'd had some numbness and tingling but they always went away or were so minor I didn't let them bother me. By then I was working outside the home and had my own pc so was able to really do some research. I hated everything I read about all the drugs they were pushing and went to a naturopath who tried lots of different things, none of which did much for me. Then I began to have the dizziness problems. To make things even scarier, my husband was transferred in his job to near that big city but we were glad that there was more medical care to choose from.

I've had 4 MRI's, all of which showed those little pin-point white spots which I was told were active lesions. The big-city doctors tried to get me to go on whatever was being pushed at the time, beginning with the Beta drugs. I refused and decided not to be a guinea pig unless they came up with a treatment that might not be as bad as the MS itself. I had considered going on Avonex but at about this time, I was hearing about Lyme Disease and how it might imitate MS. I went to my first LD support meeting and everyone there thought I did indeed have Lyme. Then I began looking for someone to diagnose and treat me but found out that, as Iíd been told at the LD support meeting, the medical community had decided that there is no LD on the west coast. At that point I began to go downhill and ended up going to California to a LLMD who diagnosed me and began treating me with abx. A year into treatment he put me on IV abx. and that lasted for a year when he felt that I hadn't responded well and I stopped, staying on a few oral abx. He also had a doctor from Seattle (a mere 2 1/2 hour drive for us) intern with him and I began seeing him rather than doing that awful trip to Cal. 4 times a year.

Now I've gotten off track and know I'm not going to be able to type much longer, but to answer a few more of your questions, the Cal. LLMD said he feels I have "lyme-induced" MS and was in favor of my going on one of the newest MS drugs - Copaxone, which pleased my neurologist. It's a daily injection and I'm just into my 5th month on it. Haven't noticed much change, good or bad. I haven't had a blood test for my muscles but the neurologist always says, except for the spasticity in my right foot and hand, I'm strong. He has me on Baclofen to help that and I know it'll take some time to see any improvement. At this point, I'm taking a break from all abx. and will see the Seattle LLMD in June. He's been very understanding about my confusion over what to do and I'm going to have another CD57 in June to try to get some more info on the Lyme. It's so hard to be in this place where I'm bombarded with completely differing opinions and the hardest is being told there's no Lyme here so I simply can't have it.

I'll stay with this thread and give you any further information I can. The neuro told me there might be something new on the horizon for MS in the next five years. Maybe in that time more will come out about Lyme, too.

Please, everyone reading this thread, listen to Marsha and know that we're all different and don't get scared that you might end up like me. If you're ambulatory, do your best to stay strong and never give up.

With prayers for your well-being,
Tronni

 
Old 03-18-2007, 05:55 PM   #4
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hanelo4 HB User
Re: Tee Dee

Quote:
Originally Posted by Pearlscale View Post
Tronni
Have some questions. I know your not well yourself, so take your time answering these. Anyone reading this, all lyme doesn't progress to this. Get on treatment and beat lyme.

Have they connected your lyme and ms. Which came first? How long in wheelchair?

How long have you had symptoms, and how have they progressed over time. Do you see a lyme connection or do you feel they are different?

I have my new MRI results to take Monday to neuro. Just wish I knew what exactly I see. About 4 yrs ago, I had my last MRI. The neuro then showed me the film that had one brain picture on it. It had 3 distinct lesions and it was easy to see them on the large film. All the new ones are 12 pictures to a sheet. So its hard to be sure. I do see a lot of pin point white dots which I thought could be lesions, but don't want to jump to conclusions.

Have you ever had a blood test that measures damage to muscle. I had one (don't remember what they called it) Mine was over 300 and they said it should have been 100 to under 200.

Are you on the injections for ms. Which, how long, how do they affect you if on them. Have they helped? Have you ever been on steriods, have they hurt your lyme.

I'll stay positive and hold on tight to that rope right beside yours and pray real hard that medical advances will quickly be made in both lyme and MS.

Prayers....Marsha
Marsha,

Hey hun I read your other post and posted to you in that long thread but I don't think you saw it. TeeDee told me to come here

I've been getting injections called vaccine neutralization. It's only for people who can take the flu shot and are not allergic to eggs. What they do is give you a little bit of the flu vaccine twice a week. It's VERY little flu vaccine but just enough to boost your immune system. I've just started it so I can't say if it's helping yet, although I have felt a lot better these past few days. It also helps with the brain fog too. It is designed for people with MS, Chronic Fatigue Syndrome and Fibro. The doctor I see has a 90% success rate with this protocol. Maybe you can ask about it in your area. I will keep all of you posted on my progress. If I can help anyone here, I will

Big Hugs Hun,
Chantel

 
Old 03-18-2007, 07:52 PM   #5
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Pearlscale HB User
Re: Tee Dee

Chantel
Thanks for the info. Will question tomorrow. But my LLMD will not let his patients get flu shots. Not sure why. Next time I talk to him, I'll ask him also.

Prayers...Marsha

 
Old 03-18-2007, 08:57 PM   #6
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TeeDee HB User
Re: Tee Dee

Hi my friends,

I'll be back tomorrow if the brain fog gives me a break. Yesterday I went outside and got some sun and this morning woke up real dizzy. My husband has been clearing his throat and said he feel like allergies are getting to him. He mowed the lawn for the first time this year and everything's budding (we're in Oregon). I think my problem is pollen, too. They say we're in for a big pollen spring and I'm going to go to work on getting a handle on that.

Thanks for the info on the shot, Chantel. I'm going to check that out as well. I hope that you're both feeling at least a little better.

Prayers and hugs, Tronni

 
Old 03-21-2007, 02:52 AM   #7
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hanelo4 HB User
Re: Tee Dee

Quote:
Originally Posted by Pearlscale View Post
Chantel
Thanks for the info. Will question tomorrow. But my LLMD will not let his patients get flu shots. Not sure why. Next time I talk to him, I'll ask him also.

Prayers...Marsha
Marsha

Oh really? Please, if you don't mind...........ask your doctor why and let me know. I actually took the flu vaccine last year and nothing happened, but I'd like to know why anyway........just to be on the safe side.

Thanks,
Chantel

 
Old 03-21-2007, 02:56 AM   #8
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hanelo4 HB User
Re: Tee Dee

Quote:
Originally Posted by TeeDee View Post
Hi my friends,

I'll be back tomorrow if the brain fog gives me a break. Yesterday I went outside and got some sun and this morning woke up real dizzy. My husband has been clearing his throat and said he feel like allergies are getting to him. He mowed the lawn for the first time this year and everything's budding (we're in Oregon). I think my problem is pollen, too. They say we're in for a big pollen spring and I'm going to go to work on getting a handle on that.

Thanks for the info on the shot, Chantel. I'm going to check that out as well. I hope that you're both feeling at least a little better.

Prayers and hugs, Tronni
Hugs Tronni

I hope you are feeling better today with the brain fog. I felt good for about 4 days and yesterday everything came back full force. Is that normal? To feel good a few days and it all come back like that? My symptoms now are chills, fatigue, brain fog, flu-like feeling, stiff joints/fingers, burning in legs and arms(legs are real bad), rib soreness, and feeling like I am going to pass out. My blood pressure is good.

Chantel

 
Old 03-21-2007, 09:04 AM   #9
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Re: Tee Dee

Hi Chantel,
I've trimmed down my reading the posts (I was feeling stressed trying to keep everything in order) so I'm pretty much concentrating on Marsha's "complications" thread. I'll still keep looking at all the posts but am just taking it slowly until I begin to get back a little energy and come out of the "fog" a bit.

As for your question, I have a good day or two and then something can send me into another yucky few days, like hearing distressing news about somebody in my big extended family or else something as simple as knowing I have to get things taken care of like bills and taxes. Just typing that made me a little dizzier!

Take care and have a cup of tea to get rid of those nasty flu-like symptoms.

Prayers to all,
Tronni

 
Old 03-23-2007, 10:03 AM   #10
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Smyle HB User
Re: Tee Dee

Hi Chantel2003:

Lyme has been known to "evolve" into many different auto-immune type illnesses. I myself am now struggling with thyroid disease, food allergies, multi-chemical sensitivities etc., just the nature of the beast.

Some people with auto-immune type illness have been shown to be at greater risk for developing Guillan-Barre syndrome after receiving vaccines. Guillan-Barre can be devastating, irreversable and life threatening. I would bet that this is why Dr. J does not want his lyme patients getting a flu vaccine. If you had one and you are okay then nothing to worry about. I believe the onset is rather fast.

Incidentally, one of the foods that I am now allergic to is eggs, both yolks and whites but mostly egg white. Albumin or the protein in egg whites is also often used in vaccines. Anyone with an egg white allergy should be aware of this.

Smyle

Last edited by Smyle; 03-23-2007 at 10:24 AM.

 
Old 03-25-2007, 02:14 AM   #11
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Re: Tee Dee

Quote:
Originally Posted by Smyle View Post
Hi Chantel2003:

Lyme has been known to "evolve" into many different auto-immune type illnesses. I myself am now struggling with thyroid disease, food allergies, multi-chemical sensitivities etc., just the nature of the beast.

Some people with auto-immune type illness have been shown to be at greater risk for developing Guillan-Barre syndrome after receiving vaccines. Guillan-Barre can be devastating, irreversable and life threatening. I would bet that this is why Dr. J does not want his lyme patients getting a flu vaccine. If you had one and you are okay then nothing to worry about. I believe the onset is rather fast.

Incidentally, one of the foods that I am now allergic to is eggs, both yolks and whites but mostly egg white. Albumin or the protein in egg whites is also often used in vaccines. Anyone with an egg white allergy should be aware of this.

Smyle
Hi Smyle

I just read up on Guillain-Barre syndrome and it said that it is very rare to get it from a flu vaccine. That it is more likely triggered by a medical prodedure, bacterial infection, sore throat, diarrhea, or a cold or flu. But either way, thanks for the information

Chantel

 
Old 03-25-2007, 07:33 AM   #12
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Re: Tee Dee

Hi Chantel-

There have been conflicting studies on vaccines and Guillain Barre in patients with normal functioning immune systems. Patients with lyme have immune systems that are over burdened and therefor at greater risk. Some LLMD's say flu shots are okay, others strongly urge against it. Based on the way my normally healthy body has been acting these past few years I believe it is wise to weigh the risks of dying from the flu (don't know the statistic on that one) or get Guillain Barre (2% increased risk in a healthy population) and then make the decision.

 
Old 03-26-2007, 06:31 AM   #13
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Re: Tee Dee

Good morning!

I was reading your post and saw where you were talking about Guillain-Barre Syndrome. I got Guillain Barre back in 1994 and at that time I was getting the flu shot every year. Mine started out with Strep and let to Guillain Barre. My neurologist told me never to get another flu shot again! I have not had one since. Now that I think back I beleive I may have had Lyme back then and I beleive somehow they were connected.

 
Old 03-26-2007, 09:51 AM   #14
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Smyle HB User
Re: Tee Dee

Hi onmyway-

Wow, I am so glad that you are okay. I know another person who got Guillain Barre after receiving a flu shot and also recovered.

I think flue shots or any vaccine for that matter is/are beneficial for most people, but people with lyme have very stressed immune systems that are not functioning properly. I think vaccines should be taken when you are acutely ill with this disease with caution...

 
Old 03-27-2007, 12:23 AM   #15
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Re: Tee Dee

Quote:
Originally Posted by onmyway View Post
Good morning!

I was reading your post and saw where you were talking about Guillain-Barre Syndrome. I got Guillain Barre back in 1994 and at that time I was getting the flu shot every year. Mine started out with Strep and let to Guillain Barre. My neurologist told me never to get another flu shot again! I have not had one since. Now that I think back I beleive I may have had Lyme back then and I beleive somehow they were connected.

OnMyWay,

Hi hun. Did you get Guillain Barre after the first flu shot or was it after a few time of taking it? Even though I feel like I've been feeling better with these vaccines, I'm starting to worry a little. I hate to stop something that is working but I don't want to risk anything either.

Thanks hun,
Chantel

 
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