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:wave: Hello from MN!

I made it to my mom's house in one piece. IT was a very LONG 5 hour drive! I was SO very glad to be out of the van by the time we pulled up...as for the last hour or so of the trip I had been in tears the whole way. Despite the fact that we stopped every so often and I tried to stretch, move, and decompress.....I still was herxing, everything hurt, vibrated, was too loud, too bright, too confusing, and I simply wanted OUT and to be DONE! But I made it, and passed out in the room my mom and dad had set up for me. Whew...what a relief that was. I felt like I had been in space for a year and had finally landed back on earth, complete with all the ground kissing and all! ;)

But I have a concern for you all....maybe some of you can help me. I'm confused. I see a great llmd in MO, Dr. C....and as you know I have had a TOUGH time with my Doxy. I am still herxing from jusst a 100mg dose that I took on JUne 25! So despite my doc telling me to obviously not take any more doxy, he now after talking with him yesterday about my continued herxes, wants to put me on 3 days of prednisone to stop the herxing pattern. Take it 3 bid, for 3 days and then stop. Then I'm supposed to start my new antibiotic of flagyl.

Has anyone heard of using prednisone for this before? I don't want to doubt my doc, but I thought steriods of any type were supposed to be bad for lyme patients??? :confused: Any thoughts? I want to stop herxing, but I'm worried about this treatment.
I would not take prednisone for a herx. That kind of treatment for herxing is "old school" and has proven to backfire. I've read several testimonials and books about people suffering from lyme whose doctors thought prednisone was the answer and it just about put them over the edge. One ended up in the psych ward because it messed up her mind so badly.

Prednisone suppresses the immune system, among other things. If you want to do something to make the herx go away faster, try the detox baths. Epsom salt and hydrogen peroxide. It works wonders. Also, try getting your doctor to give you some painkillers or some sleep aids.

How is your diet? No sugar, no alcohol, no caffiene?

I still say the best thing that ever happened for my herx problems is cholestyramine. That stuff worked wonders for me. I haven't had a herx in months. I'm feeling really good actually. No joint pain at all and I'm working every day, clear thinking, very little fatigue.

Hang in there! Better days are ahead.
Hi Romans,

I'm so sorry you are having such a rough time. I don't know about prednisone, but the detox baths sound good. I suggest buying the book "Beating Lyme Disease" by Dr. Jernigan as he explains what to do about herx's to feel better and get rid of the toxins. In my opinion it's a fantastic book with tons of information.

I'm glad to hear that you made it safe to your parent's house, even though it was a "bumpy" ride. Now you can rest and not be alone.

Keep us updated and I hope you feel better,
Denise
Romans, I also thought that prednisone is counter-indicated with lyme. I'm pretty sure I've heard my original LLMD say that, though the same doc put me on an immune suppressing arthritis drug (enbrel).

It is so hard to make decisions like this, when the medical professionals giving the advice are trusted and, you assume, know more than you, but you're just not sure it sounds right.

I can't offer more than to say I feel your pain, confusion-wise! I'm in a somewhat similar place, having recently had to decide between two LLMDs very different treatment approaches.

Personally, I find this sort of thing stressful. I'm wishing you the best!

gmcnj
Dear Romans,

What your doctor says is plausible and I know you have great faith in him. What happened to me was way beyond the scope of acceptable amounts of steroids when you have lyme. Of course we didn't know it was lyme because they were so consumed with calling it MS. Everybody on here has said you have to go with your gut. I think you should do just that with no regrets. Who knows, this may turn you around. At least it isn't an unGodly amount. Keep us posted. We care. Here's hoping this does the trick and allows you to get on with treatment.
BDFM

PS I had a bummer day. Received a jury summons and don't know what to do. Downtown Dallas and I can't even walk around my house. I am praying the homeopathic will write me a letter. The ID's nurse didn't sound hopeful that I would get one from him. This ought to help my sleep tonight. :eek:
We shall see BDFM, we shall see....day 2 starts and maybe I will not turn into the "lobster" today, that would definitely be a welcome change! As to the rest, rest, rest...I sorely wish I could find that place! I have tried everything but the kitchen sink to fall asleep, even Melatonin and all I am rewarded with most nights is 3 to 4 hours of in a row sleep...and then I'm up. Today, I am running on 2 hours of 1/2 hour increments of sleep - all I could get last night. I was up at 2:30 am doing a detox bath b/c the tingly/burning was just SO bad! Maybe you are right that it really is flushing stuff out, hence thwe worse day yesterday...guess we'll see what today and tomorrow bring. Can't say it's been fun...that's for sure. :rolleyes:

But I am definitely trying to saok up the help and attention from the family....although I am finding it hard to let the pain show to them sometimes. I just look at it as "it's so hard to deal with it myself, I don't want to overload them with it all and scare them to death about what it feels like to be me everyday" Don't know if that makes sense but I'm trying to let them in more and more....like last night when I couldn't sleep my mom was still up and I told her how it feels like every part of me is plugged in and buzzing/tingling/burning so much so that it's almost intolerable ...she looked taken aback like "oh my god I have to fix you...we need a new dr closer to home." ....sigh.... But she and they all care....it just so hard for them to see how scary it is to want to have the ability to go to any dr around here instead of driving 2 days to MO, but who around MN knows much about lyme? Not many....and they're not well known...there is some kind of security in going to someone who only treats lyme patients soley, day in day out. KNow what I mean? Anyway I digress....on a positive family note my older sis is going to bring me out to see her horses tomorrow if I feel up to it. No riding for me, but just to hang out with her and see the horses will be really nice....maybe in a few months I will be well enough to ride again. I miss it!

Ok all that's a lot of ramblling this morning...I think you got me in the thoughtful rambling mood today BDFM...it's contagious! :D
[QUOTE=Romans12:12]
Takemylife...really hoping you'll pop in and say a few words about your take on all this...I have been very intrigued by your other posts and hope you'll have some sort of insight about this prednisone issue and my continued herxing from that single dose of doxy (100mg) on june 25th!!

Either way for now I guess I'm gonna probably take a detox bath...it is now 2 am and my body feels like I am stuck between some magnetic field being pulled both ways! Yikes! :eek:[/QUOTE]


Maybe have one of your parents go the drug store and pick up a bottle of 5HTP today. This is a "pre" chemical or what is referred to as a precursor to Serotonin. This is the "feel good" chemical that allows you to sleep restfully. In late stage Lyme, your body loses its ability to manufacture it.

Call your doctor today and explain your anxiety level and heightened symptoms from the treatment are keeping your from being able to rest. Would it be possible for him or her to prescribe Xanax. A dose of .5 mg is enough to allow for restful sleep even during herxing. It has a long half life and should last a full 8 hours.

I'm not sure I understand your M.D's methodology for the prednisone. As many stated, it is an immune suppressor. From my point of view, it won't matter if the steroid presents a toxic binding effect if your can't expel the toxins because your pathways are blocked. You need wide open lymph pathways to rid the body of the poison. Right now they are completely clogged. The detox baths need to be taken every single day, religiously to get the pathways open. Then after at least eight weeks, it would seem reasonable to be aggressive with the treatment.
TML & Romans,

Don't mean to interfere in the advice and conversation here (as I'm sure TML has much more experience in the Lyme stuff than I do), but I do want to clarify something about Xanax. It is a Benzodiazapine (a special type of anti-anxiety medication). The "prototype" drug in this class is Valium. Other frequently used BZD's include Xanax, Klonopin, Ativan & Restoril.

If the main problem caused by the Herxing is anxiety, I'd agree with TML (at least on the appropriateness of someone prescribing a BZD like Xanax). Xanax may give the quickest relief of the BZD's that could be ordered. Do realize, though, that there can be some side effects from these drugs and that current pysch trends are moving away from using BZD's to using SSRI's (anti-depressants such as Zoloft, Clexa, Prozac, Paxil) for anxiety - or at least weaning folks off BZD's after initial treatment for a few weeks and onto SSRI's. (I don't know how treatment might differ due to Lyme disease or anxiety caused by herxing as opposed to other types of anxiety). Never just stop taking a BZD after taking it for a few weeks - as it can cause a nasty withdrawal without proper tapering off.

Another option, if sleeping (or lack thereof) is the main problem, would be to get a prescription for a medication like Ambien. This is a non-BZD hypnotic used specifically for aid in sleeping (though there are usually some limitations on how long you should use it). It usually works very well, will "put you out", but doesn't give that "hangover" feeling of something like Benedryl. It usually works very quickly and has less serious side effects than BZD. There is also no withdrawal or tapering down necessary. I'd suggest trying 1/2 pill first (esp if you are sensative to medications).

TML - if you have other thoughts on this, or reasons why you'd still suggest a BZD over a non-BZD, please let us know. Like I said, I don't know a lot about how Lyme interferes with all our systems and your suggestion may be better.

K
BDFM ~ I so wish I had been with my sister, that would have been glorious! But maybe in a few days. I finally slept last night...think my body was just so exhausted from all of this that it collapased in a heap. So at least I feel a little rested, although still feel like I ran 5 - 30 mile marathons yesterday. Sorry to hear that you on the other hand have not been having such luck with your new sleep aide - mag...I was so hoping that would work for you! But maybe what with your new bath schedule and the added mag it will just take a bit for your bod to level off. I will hope! Everyone needs sleep! How can our body function and repair and heal without it!!

In the mean time though I definitely am going to take a breather from all drugs for a few days and shoot for starting my flagyl on Wed or Thurs...we'll see. Thanks for the hugs and the warm thoughts....thats a great way to start off any morning. :D

Kali ~ thanks for the lesson on bzds vs ssris...like BDFM I had no idea that's what they were named. Although most of the info goes in my head and promptly leaves (lyme brain ain't it great!) I am definitely going to print this out so we my llmd suggests stuff I can compare it to this. I like the sound of that ambien stuff....I have been on ssris before and they have never been my friend. Bad reactions and weight gain through the roof. So I try to stay away from them, plus I have been the route of valium and all before too and it does a number on me as well...I'm not so keen on worrying about addicting myself to stuff. One nice thing about having a naturo/llmd is knowing that he's not going to try to shove a whole bunch of narcs and meds down me to just "mask" my symptoms...but I am definitely hoping that on monday he will give me something to help with the sleep. Thanks so much for your input...and I welcome any thoughts TML has to offer on this all as well.

Be well today all! :)
Romans,

I've been using ambien for a while. I used to have the most beautiful sleep before lyme! Asleep minutes after my head touched the pillow, slept til five minutes before my alarm was set to go off.

I started having what I think is a typical lyme sleep disturbance about two years into this. I'd still get to sleep okay but would wake up at 2 or 3 a.m. and be up for the rest of the day. Netflix became my best friend!

I had a sleep study, which determined I had "significant sleep disturbance." Duh.

Anyway, I've done pretty well on ambien. I usually sleep through the night, and while I don't actually remember what it feels like to be 'normal' I'm okay when I wake up.

I've been on ambien longer than the recommended length, but my doctor always felt that getting sleep was really critical. Every time I try to go off it, I'm back to that pattern. So for now, its ambien for me.

gmcnj

p.s. I also take signficant amounts of magnesium. It's really supposed to help with muscle pain and with sleep as well.





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