could it be a herx from new med of zithro which I started three days ago?

Lisa
 

I actually feel like that most of the day with maybe a half hr break a couple times through out the day. Also having shooting/stabbing pains in my head mostly.

I am so new, so I can't help but I am sympathetic to what you are feeling!
Hope you feel better soon!

Take care,
SR
 

Going through it now, just restarted meds. Feel like arse

You certainly have my sympathy. I posted a similar question about the evils of zith a week ago here: http://flash.lymenet.org/ubb/Forum1/HTML/030334.html

Things are much better today with only vague, mild flu-like symptoms, and the added bonus is the improvement in LD symptoms. Hope you're feeling better soon.

I get so weak all of a sudden I have to lie down...it feels like it comes from my head....it's a sick feeling..not nauseaus, just feel sick all over, especially lightheaded and weak...

then it's gone...then it's back awhile later....sometimes it comes with weakness in arms and legs, sometimes just like the head...

must be herxing from zith....didnt' wake up this morning with this..and haven't taken my zithro or mino today yet....but started feeling crappy after lunch , after i took my herbs....maybe i should skip my meds today...

Lisa
 

------------------
~*~ Carole ~*~
Grandmother of 4
 

I think the herbs are what is making me feel weak though..just started new ones about 5-6 days ago...and felt weak about an hour 1/2 after i took them today...still feel kind of crappy...think i'm having a healing crisis from the new herbs actually..

don't know what 's in them..they are for a heat disturbance in my bile and wind..they are in little balls....\dr. dhonden says they'll help within a week or so..so i' have to hang in there..but yo're right..i did start to feel crappy about an hour 1/2 after i took the herbs today...interesting//

thanks..

lisa

[This message has been edited by lla2 (edited 03 January 2005).]
 

What did Dr. H think of these new symptoms? Is he still out of town? Their phone system is the pits.
 

dr. H's office still not responding..left message yesterday. will probably hear today....

feel alittle better this morning..might be a healing crisis from new herbs...hate the feeling..can't depend on how you're going to feel from moment to moment...

Lisa
 

Sorry you are feeling this way - it is no fun.
 

I have to work. any other ideas?

thanks

Lisa
 

Dr. H. thought I should use the "Big Guns" so
I tried the maximum dose of IV Rocephin for several months. Unfortunately, it didn't clear the fog and actually caused my labs to get out dangerously of whack. Needless to say, the line was pulled ASAP.

I asked Dr. H. about Immunoglobulin and he said he intends to consult with Dr. K. to get more details. Did you discuss this with him?

I've heard anecdotally that it's hit or miss. I spoke to someone who's been on it for 2 months and it didn't help them, in fact they got worse.

Another LLMD told me that he had tried IV IGG and Gammas in the '90s with poor results. He said that the IGG antibodies are from random donors and not specifically against Lyme.

He disputed whether the post-Lyme syndrome exists and said that the existing modalities to "calm an overactive immune system" had not proven to be efficacious for chronic Lyme.

A neurologist told me that when using IV IGG for peripheral neuropathy, it attempts to tame abnormal antibodies by "converting" them. He said it was a risk/reward ratio as IV IGG can have serious side effects and is $10k a month

I'm switching to Ketek, a Ceflo of some sort, and Malarone to see if that helps but I'm not expecting miracles. I'm also doing metals chelation to see if that has anything to do with my fog.

 

can't stand it...makes me feel very anxious...right now i'm herxing on the new tibetan herbs..hoping when i clear from those i'll be better..dr. dhonden seems to think i will be...hope so...

thanks
Lisa
 

Wish I could refuse to live this way - I try to do that but my body refuses right back - so far its winning, not me.

Hope you'll have more luck - I know everyone is totally different and things happen for different reasons - different causes so luckily no two people are the same that way.

Good luck Foggy.
 

Hot baths and exercise help ...
 

quote:

---

Originally posted by Foggy:
I asked Dr. H. about Immunoglobulin and he said he intends to consult with Dr. K. to get more details. Did you discuss this with him?

I've heard anecdotally that it's hit or miss. I spoke to someone who's been on it for 2 months and it didn't help them, in fact they got worse.

Another LLMD told me that he had tried IV IGG and Gammas in the '90s with poor results. He said that the IGG antibodies are from random donors and not specifically against Lyme.

He disputed whether the post-Lyme syndrome exists and said that the existing modalities to "calm an overactive immune system" had not proven to be efficacious for chronic Lyme.

A neurologist told me that when using IV IGG for peripheral neuropathy, it attempts to tame abnormal antibodies by "converting" them. He said it was a risk/reward ratio as IV IGG can have serious side effects and is $10k a month

---

it can take up to 4 months of bi-weekly or tri-weeklly infusions of IV gamma globulin to start to work. this is a long term therapy for immune deficiency and neuropathy. the efficacy is also dependent on dosage.

IgG antibodies are not aimed against any pathogen, their use is to immunomodulate the immune system.

the problem is an underactive immune system, not an overactive immune system. the only thing overactive is cytokine output which causes chronic inflmmation.

furthrmore borrelia invades b and t cells and long term lyme patients subsequently make idiopathic antibodies. this is "post lyme syndrome".

the person still has a lyme infection but cannot fight it with an impaired immune system regardless of all the abx in the world.

there are no serious side effects with IVIG except for flu like symptoms after infusion, which pass as the body becomes used to the substance.

the product is heavily screened to insure no problems.

most LLMD's, with the exception of Dr. K, know nothing about IVIG.

for this it is best to see an immunologist or expert neurologist (probably both) and have the correct testing done.

only these doctors can diagnose and prescribe the treatment and submit properly for the insurance coverage.

anyone who i have spoken to that has used this modality has done fantastic as the immunomodulation allows the borrelia to be more easily killed by antibiotics.

definitley worth looking into for chronic lyme.
http://www.emedicine.com/med/byname/intravenous-immunoglobulin.htm
http://www.annals.org/cgi/content/full/126/9/721?ck=nck
 

First, how long have you been on mino? The mino herx is beyond description, it's so awful, and you can herx on as little as 50mg/day. Also, if you take outdated mino, it can be damaging.

You can always cut back on mino, down to as little as 25mg/day, and get improvement.

As for the herbs... well, they come from halfway around the globe, and probably aren't packaged in an FDA-sanctioned lab. They require quite a leap of faith, and you have no legal controls governing their ingredients, or fellow patients to compare notes with.

Right now, Dr. H's office is overwhelmed by patients. Please be cautious and take good care of yourself.

I bet you'll get slowly better like I have. Eventually your immune system will take care of most of it.

I can sure understand your impatience with the persistent symptoms though....

Charlie
 

liz; i can tell dr. h's office is busy..they always call back the same day..no call in two days.! yikes, I didn't take my mino or zithro yesterday, will see how i feel today..

charlie, after you stopped the abx...how did you feel? did it take a while before your own body kicked in? did yiou still feel like you should be taking the abx, and were you haveing some leftover symotpms like the sicky's? this is really the only symptom left, except for occassional neuropathy type pain under my feet or in my nipples (sorry)....more of a burning in those places...

but otherwise, when i don't feel sick, i don't have symoptoms so i feel like i should be stopping abx..maybe adn give my body a chance to try this on it's own...

i'm doing mino 100mg a day adn zithro 600mg a day...maybe pulse a few times a week adn see how that goes?

Lis
 

I'vs had that feeling ever since I got up to my full dose of the Zith that my MD added in 2+ weeks ago. Feels like a really bad flu. I have times when I am functional but still have an all over body ache and weakness. Feel like I might hurl sometimes too.

I hope it goes away soon.

Bc
 

Run out and slap down 10 K right now to get that IVIG treatment

In answer to your question, YES when I go off of abx ( like I have recently) everything gets screwed up. I have seen a particular poster tell people that there is not a withdrawal from abx.

Like hel* there isnt. Your hormones try to readjust and your immune system tries to kick back into gear itself, not to mention your ANS could be trying to reset itself without chemically induced drugs.

ANd NOT to mention that alot of other "Bugs" that were suppressed while taking abx tend to surface, as well as fungi.

Have you tried to clean out your body? A liver cleanse, alot of milk thistle, etc.

I'm going through the same thing now, as you know. Alot of adjustments are going on in the body. Everything is readjusting, including the bowel flora, etc.

Let us know how it all goes.

I"m so stumped on whether or not I should or should n't keep taking the abx..should I try to stop? I didn't take them yesterday..today I feel alittle foggy and lightheaded..but not as bad as when I did take them..

but will all this come 'roaring' back?

what to do?

Lis
 

I stopped meds when I felt pretty good and abx didn't seem to be getting me any better. some symptoms cropped back up in a couple of months so I took some more meds for a few weeks. It gets longer between return of syx each time. It's been 6 months since I took anything but artemesinin and I'm just now doing a 2 week round of bactrim/biaxin/artemesinin because of that sicky feeling and sore knees.

I think the sometimes burning feet won't ever go away but it's not severe enough to slow me down.

Pretty sure it's just recurring babs i'm treating...artemesinin is cheap and I take it off and on with just a shot of the other stuff maybe every six months or so.

I felt like immune system was working as soon as I got the bacterial/parasitic load down. In fact I'm not sure it wouldn't take over with no meds but I won't chance a full relapse and artemesinin isn't troublesome to take.

I never had the head stuff you talk about though...

(forgot to say I take some amox about 3 times a year when I get my teeth cleaned just as a precaution and just for a couple of days. Don't think it does anything but prevent an oral bacteria overload).

Charlie