27 replies to this topic

[Chuck Z.]

In the last few years, I've been hit with poison ivy more than once. Each time, my doc put me on a steroid pack. I dunno if it was all in my head, but I swear i felt "clearer" and more alert. I've also had chronic strep/ear infections and when I am put on an extended regimen of antibiotics, I again feel better!

Is this all in my head, or is there possibly something to this? Has anyone else had the same experiences?

[Chuck Z.]

Ok, to elaborate (seeing no one has replied )

I have seen reference to the possibility that this condition could be attributed to an imflamitory state? autoimmune diseases? Has anyone else seen this?

[sleepylisa]

I have also heard different things about certain auto-immune disorders "triggering" Narcolepsy. I'm sure you've had your blood tested for these before your diagnosis, but it might be worth checking into again. It is possible you have picked up something since and it is helped or suppresed by antibiotics.

[Lovemyhusband]

In the last few years, I've been hit with poison ivy more than once. Each time, my doc put me on a steroid pack. I dunno if it was all in my head, but I swear i felt "clearer" and more alert. I've also had chronic strep/ear infections and when I am put on an extended regimen of antibiotics, I again feel better!

Is this all in my head, or is there possibly something to this? Has anyone else had the same experiences?

NO ITS TRUE.

Andre has a hobby that takes him into the woods every year and every year the poison ivy gets worse and he gets longer/higher doses of steroids. That is when he is at his best (maybe baseball should have been his profession). I try to stash some away if the poison ivy goes away before the course of treatment is over for those rough times.

He just got his first case of poison ivy the day you posted. The funny thing is it wont be the last and it will only get worse as the year goes on. I keep telling him "leaves of three, let them be" but the hobby drives him to do stupid things .

He is now leaning over my shoulder asking me to tell you he felt like superman while he was on a course of prednisone. It just gives him that boost to keep him going throughout the day.

[Chuck Z.]

He is now leaning over my shoulder asking me to tell you he felt like superman while he was on a course of prednisone. It just gives him that boost to keep him going throughout the day.

Dig it! I'm not half-wacked then! whoo-hoo!!!

Too bad the heart "explodes" after too much steroid use!!! But maybe, if a healthcare provider catches wind of this phenomena, something may "click" and their might be an alternative that does the "same thing" -- and that's the BIG question: what is that "thing"???

Calling any docs??? yooo!!! hooo!!!

[greatbig47]

Calling any docs??? yooo!!! hooo!!!

Interesting...

Very interesting....

I'm trying to get more Docs and researchers on the board...really I AM!
I'm not big on Antibiotics, but that may be because I haven't experienced the same effect.

I'm thinking about having a contest...the winner would be the person who sends the most emails to Sleep Docs would win.
PM me and tell me what you think...

*ahem* *geeze, I run the place and I have trouble staying on topic!*

I think doctors should be aware of this. Maybe there's something out there that's better/more than speed and Zxrem.

[Lovemyhusband]

Interesting...

Very interesting....

I'm trying to get more Docs and researchers on the board...really I AM!
I'm not big on Antibiotics, but that may be because I haven't experienced the same effect.

I'm thinking about having a contest...the winner would be the person who sends the most emails to Sleep Docs would win.
PM me and tell me what you think...

*ahem* *geeze, I run the place and I have trouble staying on topic!*

I think doctors should be aware of this. Maybe there's something out there that's better/more than speed and Zxrem.

Andre's new pcp is finally on board with the whole prednisone treatment for his poison ivy. I don't think they like to try things when you get an unexpected (even positive) result. When he mentioned how great he felt with little EDS while taking prednisone they started to question his poison ivy. His whole body (even the unmentionables) was covered. Of course this was before he was dx with N. Even when he mentioned it to his pulm doc he brushed it off.

It would be nice for a clinical study of some kind to test out drugs in that class to see if it would benefit pwn. Of course it could have already been tried and I wouldn't know the difference

I like the idea of having a medical professional around. It would be nice to have someone who we could bounce this type of question off of.

[Chuck Z.]

Andre's new pcp is finally on board with the whole prednisone treatment for his poison ivy. I don't think they like to try things when you get an unexpected (even positive) result. When he mentioned how great he felt with little EDS while taking prednisone they started to question his poison ivy. His whole body (even the unmentionables) was covered. Of course this was before he was dx with N. Even when he mentioned it to his pulm doc he brushed it off.

It would be nice for a clinical study of some kind to test out drugs in that class to see if it would benefit pwn. Of course it could have already been tried and I wouldn't know the difference

I like the idea of having a medical professional around. It would be nice to have someone who we could bounce this type of question off of.

I've got a regular checkup with my neuro/sleep guy in the beginning of June -- I'm definately bringing this up!

[sleepygirl08]

NO ITS TRUE.

Andre has a hobby that takes him into the woods every year and every year the poison ivy gets worse and he gets longer/higher doses of steroids. That is when he is at his best (maybe baseball should have been his profession). I try to stash some away if the poison ivy goes away before the course of treatment is over for those rough times.

He just got his first case of poison ivy the day you posted. The funny thing is it wont be the last and it will only get worse as the year goes on. I keep telling him "leaves of three, let them be" but the hobby drives him to do stupid things .

He is now leaning over my shoulder asking me to tell you he felt like superman while he was on a course of prednisone. It just gives him that boost to keep him going throughout the day.

I too felt like Superman when my doctor put me on Prednisone for pain. But then the side effects kicked in (at least for me). I developed this vocacious appetite and gained 60 pounds and it made me manic. I no longer take Prednisone, the doc took me off of it due to these side effects.

[Lovemyhusband]

I've got a regular checkup with my neuro/sleep guy in the beginning of June -- I'm definately bringing this up!

Let us know how you make out with that. Andre's appointment is in August and I think I will bring the subject up again. You never know he might be willing to try something new. The provigil isn't doing its job as well these days.

[Chuck Z.]

Let us know how you make out with that. Andre's appointment is in August and I think I will bring the subject up again. You never know he might be willing to try something new. The provigil isn't doing its job as well these days.

Will do!

[greatbig47]

Let us know how you make out with that. Andre's appointment is in August and I think I will bring the subject up again. You never know he might be willing to try something new. The provigil isn't doing its job as well these days.

Keep in mind that antibiotics will probably never be part of a long term therapy. Usually they get in...kill everything...let good stuff grow back. It would be nice (at best) if some research could be done as to WHY it happens this way.

I'm not a doctor...I don't even play one on TV. But who ever thought the date-rape drug would be helpful to some of us?

-Stu

[Chuck Z.]

Keep in mind that antibiotics will probably never be part of a long term therapy. Usually they get in...kill everything...let good stuff grow back. It would be nice (at best) if some research could be done as to WHY it happens this way.

I'm not a doctor...I don't even play one on TV. But who ever thought the date-rape drug would be helpful to some of us?

-Stu

If I'm not mistaken, some formulations of antibiotics use steroids to help boost the potency. So I think the focus point is that it all has something to do with imflamation (vascular or maybe something else).

[sleepylama]

I just wanted to reply on the auto-immune question in general. I have SEVERAL auto-immune related diseases, at least one tied to an HLA gene strain (b27). In doing research w/my Rheumatologist and Sleep Docs, it is my understanding that Narcolepsy could be related to auto-immune diseases and/or could be one, but as w/most of the other auto-immune diseases, there is still a lot of research to be done.

One thing is for certain w/those of us w/inflammatory auto-immune diseases, once you have one, you most likely will get others, as once the immune system is "broken" it is weak. I have Ankylosing Spondylitis...it is in the same family as Lupus and MS and is considered rare like Narcolepsy...so hey, I am lucky! hehe

Also, in the quarterly newsletter for the Spondylitis Association of America, the link between inflammatory auto-immune diseases and sleep disorders was just discussed. It doesn't mention Narcolepsy directly, but several others are mentioned.

One last thing, on antibiotics, this same question comes up on the spondylitis.org forum. There are many people who swear by antibiotic therapy for the inflammatory diseases. It is not considered the "standard" therapy in America, and is a controversial topic on the forum, but there are some who are certain it is THE thing fighting their illnesses.

[Chuck Z.]

WOW -- I'm so glad I replied to myself, ROTFL (see first msg of thread)

The information posted in the last day on this thread has been astounding!

Thanks to all for your input!!!

[detectivedonna]

In the last few years, I've been hit with poison ivy more than once. Each time, my doc put me on a steroid pack. I dunno if it was all in my head, but I swear i felt "clearer" and more alert. I've also had chronic strep/ear infections and when I am put on an extended regimen of antibiotics, I again feel better!

Is this all in my head, or is there possibly something to this? Has anyone else had the same experiences?

You have just described what has been happening to me for years. I get a lot of sinus infections and each time they give me an injection of Rochephin and Decadron. Then I get a Zpack to take at home. Towards the end of the sinus infection..once it is cured and clearly going away, I feel so incredibly awake and active and capable. Then, as I finish the antibiotics leave my system, I feel the energy draining from my body. I called and begged my doctor to do something because I didn't want to lose the clarity and energy. They did all sorts of tests but coudln't find any explaination for it. It is so frustrating. I don't know if this rings any bells, but I also became deathly allergic to peanuts and highly reactive to penicillan and rodents at the age of 39. D

[Chuck Z.]

As promised, today I talked at length about any correlation between steriods and improvement of symptoms with my neuro. And, YES, *all* of his narcoleptic patients have made the same observations. Unfortunately, steroids cannot be used long term. He pointed me to the following sites to inquire about any ongoing studies or to even suggest future study. He recalled that he had seen numerous references, but could not point me to any specific article.

http://www.iom.edu/
http://www.nationalacademies.org/

[Lovemyhusband]

. And, YES, *all* of his narcoleptic patients have made the same observations.
http://www.iom.edu/
http://www.nationalacademies.org/

Did you just find the only common thing with PWN?! Who would have thought you would all have the same reaction to a class of drugs.

[Chuck Z.]

Did you just find the only common thing with PWN?! Who would have thought you would all have the same reaction to a class of drugs.

To be clear, my neuro told me that all of HIS patients. This is not declaring that all narcoleptics will react this way, but it *does seem* to be a common theme.

[Lovemyhusband]

Sorry I got a little excited .