LymeNet Flash: THE SOAP OPERA FROM HELL!!!!

This is topic THE SOAP OPERA FROM HELL!!!! in forum Medical Questions at LymeNet Flash.

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Posted by k-lyme (Member # 5574) on :

Hi guys and gals,

I bet a bunch of you out there can relate to this, but it seems like this whole situation of mine is like a SOAP OPERA FROM HELL!!! I am doing just so bad....(flash back).... I have had lyme for a year and a half now and am on IV Rocephin, Zithromax and mepron. My current symptoms are pain that is sharp and stabbing all over my body that is like a ten (on the stupid pain scale that the doctors we'd all like to strangle in the ER use) everyday. I am having to use fentanyl transmucal lolipops (which is basically the equivalent of IV medication meaning instant but through the mouth) because nothing, and I MEAN nothing works. I guess what I am trying to ask is, HELP ME; what do any of you use by means of a supplement or herbal remedy? I seem to be stuck in a constant herx and do not know how to get out of it( what I mean by that is like three weeks) Thank god for this post discussion, I do not know where and what I would do without it. again any help is very much appreciated.

THANX
-- Until we talk again, best wishes
-K-lyme

Posted by graneet (Member # 3112) on :

it is so hard to juggle what is going on herx, toxins, yeast.
Make sure your drinking tons of water and flushing out and going to the bathroom properly i say this because when i thought i was having a month long herx i really believe it was toxins building up in my system.
Most of all call your doc period. Dont let bad herxes keep going Doc C say its worse on you in the long haul. Unfortunatly i have been having them for six years on and off and just now doing different.

graneet

Posted by k-lyme (Member # 5574) on :

Hi graneet,
Thank you for your input. I am trying to drink lots of fluids and am failing miserably because I am so nauseated and sick to my stomach. I dunno what to do anymore, I feel sorry for you that you have had lyme for 6 years and haven't gotten rid of it. I have had it for a year and a half but was diagnosed and immediately put on antibiotics at 1 year. Unfortunately, I am not getting better. God help us all. Take care and good luck!

Posted by minoucat (Member # 5175) on :

I'll second what graneet says.

Different docs have people go through herxes in different ways, but you're on quite the intense brew of abx and you need to make sure you're not reacting to them, rather than Bb, babs, and toxins.

Given your last post, I'm also concerned that you could be becoming dehydrated, and not flushing your liver and kidney sufficiently. I do understand the nausea bit, but have you tried a peppermint/ginger tea combo? (I make mine from scratch, and it really helps with the nausea).

Nothing really helped me herbally speaking when I was in a lot of pain. Warm baths were comforting for as long as I was in them. I did have the stabbing pains, but they were more in the extremely uncomfortable range, rather than agonizing. My low back and headaches were my worst pain, and they got very bad indeed. Sometimes Esgic (butalbytal, acetominophen, caffeine) helped, and sometimes nothing did.

For a while my pain cycles would last up to 4 weeks; this gradually got better.

I feel pretty good now, so there is hope. That level of pain is mostly just a bad memory (Ok, a horrific nightmare, but over) at this point.

Posted by HaplyCarlessdave (Member # 413) on :

Sorry to hear how bad everything's sucking for you right now.
When I was at a really grim stage, I found psyllium husk powder (1 level to slightly rounded tsp stirred into 8 oz H20) along with yarrow tea. helped with GI stuff, and gingo biloba seemed like it was helping, too.
Keep fighting! Neber givUP!
Another thing that may help is artimesia anua. Might you have babesia, too?
I hope you resolve this stuff and feel much better soon!
DaveS

Posted by k-lyme (Member # 5574) on :

Minoucat, Lisa in Arizona, and Happy Carless Dave,

Thank you all for your input. I have tried the ginger peppermint tea and it has only made me sicker. I had a tea mixture that a doctor concocted for me and that qorked for a while. Yes, Happy carless Dave, good pickup, I do have babesia. I haven't eaten anything in two weeks and when I try I set myself back for many many days. In the next few day I will get my hands on some of those herbal remedies you've all mentioned. I try to drink water but that makes me sick too. I do have a tea that agrees and try to drink as much as I can of that. THANX again. Good luck to you all
-K-lyme

Posted by rdcallen (Member # 3987) on :

So sorry about your pain. Have been there myself. Several weeks in the 9-10 scale. Found out after the fact that I was not to let the herx symptoms get that bad. Call your doctor and try to back off just a little if possible. May have to stop altogether for a few days. Our mission is to survive this thing. Kill it without killing us.
Good Luck
Cathy

Posted by Rita on :

Try to take supplements such as magnesium and MAX EPA fish oil softgels. Also, give up sugar, flour and any other food that may be harming you. Take up walking (extremely difficult to get started) because, once you get in the habit, it makes you feel much better.

What supplements are you taking?

Posted by richtersl (Member # 2554) on :

I'm so sorry to read that you're going through hell with LD at the moment. You've been given good advice so far.

Something else you might want to consider doing is to stop ALL consumption of artificial sweeteners. Someone just posted a note on the board about the dangers of aspartame, a common artificial sweetener used in diet sodas. It's a lengthy read, but a good one: http://flash.lymenet.org/ubb/Forum1/HTML/026738.html

The article does not mention Lyme, per se, but does mention diseases that are often misdiagnosed as Lyme. So, if eliminating aspartame from your diet can improve diseases that are misdiagnosed as Lyme, it can also help those who suffer from Lyme. (I think I got that correct...)

Linda

Posted by liz28 on :

My rocephin and minocycline herxes were that bad. If nothing else, they gave me ammunition when duck doctors told me I didn't really have Lyme.

Others have given you some great advice, so I'll just add: first make sure that you stay on rocephin as long as you can. I was taken on and off, and the Lyme became resistant, which means most of these herxes were done for naught. Second, try some anti-inflammatories. My faves are Celebrex and Bextra, and an herb tincture called coptis. If no coptis is available in your area, try some goldenseal tincture. They both contain berberine, which helps with the inflammation.

I found that L-theanine, which is sold in supplement form and is also an active ingredient in green tea, ratchets down the anxiety several notches. Also, CoQ10 has become a lifesaver with the doom-and-gloom.

If you can control the inflammation, the herxes are much more bearable.

Posted by liz28 on :

Actually, there's one more thing you might try, although it probably won't work. I just found out that my acid reflux was making my Lyme worse, so I've been taking a lot more Prevacid. Apparently, uncontrolled acid from your stomach can make its way to your throat and sinuses. So if there's an over the counter antiacid you feel comfortable with, maybe you could try that and see if it helps.

Posted by dmcbrayer (Member # 5296) on :

quote:
Originally posted by k-lyme:
Hi graneet,
Thank you for your input. I am trying to drink lots of fluids and am failing miserably because I am so nauseated and sick to my stomach. I dunno what to do anymore,

Have you tried taking any activated charcoal?
It helps by soaking up toxins that are in your intestines.

DMC

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