inflammation

[Guest guest]

Audra:

I know, it sounds confusing. I was told that 20% of us look normal on the

labs when there is actually something going on. Therefore, even though my

labs look normal, because my hepatologist needs to get me off of Prednisone

(for various reasons) he will be performing my second liver biopsy, on

Friday, in 15 mos. to see what is actually going on. He says it is the only

definitive way to know. Then he will know if he needs to prescribe something

to replace the Prednisone or not. I am also currently on 75mg of Imuran and

900mg of Actigall.

Regarding the calcium supplements, my doctors have me on Os-Cal 500 mg with

Vitamin D twice a day.

Hope you are feeling well.

Warmly,

[Guest guest]

I may have a fungus infection of my fingernail bed. I understand the

treatment is grisiofulvin, but it is toxic to the liver. Anyone know

anything about this?

J

>From: " Joe Mooney " <mooneyjo@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] inflammation

>Date: Sun, 29 Aug 1999 19:41:10 -0700

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>From: " Joe Mooney " <mooneyjo@...>

>

>The biopsy would be to asses if there is any permanant damage. Any calcium

>supplement is good. There is als a medication called Didronel that is taken

>for two weeks out of every 90 days.

> [ ] inflammation

>

>

> >From: ADilli5783@...

> >

> >I am one of the AIHers and something the doctor told me I'm not

> >understanding. I figured one of you guys would.

> >

> >He said before stopping the medication on down the road (2, 3, 4 years)

>we

> >would need to do another biopsy. My liver tests have been way below the

>high

> >normal mark on everything. Does this mean that some inflammation can

>still

> >be going on? He said the biopsy would be to determine if there is any

> >inflammation. Just another thing I'm totally confused about with this

> >disease.

> >

> >Also, does anybody take calcium supplements with the prednisone and if so

> >what kind? I didn't know if you had to be careful about taking certain

>ones.

> > I am scared to take anything with this liver problem, but don't want to

>get

> >osteoporosis. Do you just buy them at the grocery store?

> >

> >Audra

> >

> >---------------------------

[Guest guest]

Audia:

I have had two biospys already since 1997. Will be going back to the Mayo

Clinic on September 28th and I might be scheduled for another one due to the

fact that I relapsed two times this year.

I talk Calium everyday because of the bone damage. I take the new chocolate

crewable kind. 1000 a day plus I take a vitamin everyday also per to Dr.

Czaja at the Mayo Clinic.

Sue AIH

Wisconsin

[Guest guest]

Sometimes they do another biopsy before trying taking you off the meds. 3- 4

years is often the time they give you before they give remission a try and

take you off the meds. Don't worry you have a few years break. I'm scheduled

for another biopsy in 2 years. I still would like a biopsy to confirm the

blood tests results even if they are horrible. Blood tests are still not all

that conclusive when it comes to the liver I understand.

Regards

Mark

[ ] inflammation

> From: ADilli5783@...

>

> I am one of the AIHers and something the doctor told me I'm not

> understanding. I figured one of you guys would.

>

> He said before stopping the medication on down the road (2, 3, 4 years) we

> would need to do another biopsy. My liver tests have been way below the

high

> normal mark on everything. Does this mean that some inflammation can

still

> be going on? He said the biopsy would be to determine if there is any

> inflammation. Just another thing I'm totally confused about with this

> disease.

>

> Also, does anybody take calcium supplements with the prednisone and if so

> what kind? I didn't know if you had to be careful about taking certain

ones.

> I am scared to take anything with this liver problem, but don't want to

get

> osteoporosis. Do you just buy them at the grocery store?

>

> Audra

>

> ---------------------------

[Guest guest]

My Dr has me take calcium. I take 3 Citracal Calcium Citrate caplets +D.

I take 2 with breakfast when I take the prednisone & azathioprine then

take the 3rd one with lunch. He did not specify this brand but it was

one a rhuematoligist listed as his approval & current Dr had me increase

from 2 to 3 a day. I have had 3 biopsies. First one for the diagnosis

2nd & 3rd following flare ups when I was reduced on prednisone. Since

the 3rd biopsy I am taking prednisone again & Dr expects to reduce it to

5mg where I will stay forever + azathioprine. My biopsies were

3/97,4/98, & 7/99.

I buy my calcium at WalMart.

Good luck to you.

Leona M. AIH

[Guest guest]

The biopsy would be to asses if there is any permanant damage. Any calcium

supplement is good. There is als a medication called Didronel that is taken

for two weeks out of every 90 days.

[ ] inflammation

>From: ADilli5783@...

>

>I am one of the AIHers and something the doctor told me I'm not

>understanding. I figured one of you guys would.

>

>He said before stopping the medication on down the road (2, 3, 4 years) we

>would need to do another biopsy. My liver tests have been way below the

high

>normal mark on everything. Does this mean that some inflammation can still

>be going on? He said the biopsy would be to determine if there is any

>inflammation. Just another thing I'm totally confused about with this

>disease.

>

>Also, does anybody take calcium supplements with the prednisone and if so

>what kind? I didn't know if you had to be careful about taking certain

ones.

> I am scared to take anything with this liver problem, but don't want to

get

>osteoporosis. Do you just buy them at the grocery store?

>

>Audra

>

>---------------------------

[Guest guest]

J:

I also have fungus on my two big toes. My doctor told me that there is a

treatment for it but it is very bad for the liver so he told me to just soak

my feet every night with Dial soap. He wants it looked at when I go to the

Mayo in September.

Sue AIH

Wisconsin

[Guest guest]

It is my understanding that folks with liver disease are not supposed to

use any of the newer medications for fungus that you have to swallow. It

is really too bad because the medicines work much better than those that

are applied externally.

susan johnson wrote:

>

> From: " susan johnson " <shireen42@...>

>

> I may have a fungus infection of my fingernail bed. I understand the

> treatment is grisiofulvin, but it is toxic to the liver. Anyone know

> anything about this?

>

[Guest guest]

In a message dated 9/6/1999 5:50:03 AM Eastern Daylight Time,

spangs@... writes:

<< In a month or two, I'll start taking a different

drug (for the life of me I suddenly can't remember the name but several

people

here are familiar with it.) The one drug will act both as a " natural "

hormone

replacement and also as a treatment for osteoporosis and will rebuild bone

density. At that point, I no longer will need Climara or Miacalcin, though I

imagine I'll continue taking extra calcium. >>

Geri,

Did you have a complete hysterectomy? I did and I've been told that I will

need to be on hormones for life, since my ovaries are gone. Did you think of

the name of that new drug?

Thanks,

(AIH)

Florida

[Guest guest]

In a message dated 9/6/1999 5:50:03 AM Eastern Daylight Time,

spangs@... writes:

<< In a month or two, I'll start taking a different

drug (for the life of me I suddenly can't remember the name but several

people

here are familiar with it.) The one drug will act both as a " natural "

hormone

replacement and also as a treatment for osteoporosis and will rebuild bone

density. At that point, I no longer will need Climara or Miacalcin, though I

imagine I'll continue taking extra calcium. >>

Geri,

Did you have a complete hysterectomy? I did and I've been told that I will

need to be on hormones for life, since my ovaries are gone. Did you think of

the name of that new drug?

Thanks,

(AIH)

Florida

[Guest guest]

Audra,

I had a biopsy in November 1997 and they diagnosed stage IV cirrhosis (on a

scale of I to IV). Since then, there's been no further mention of a biopsy.

What would be the point, since they've already established that the cirrhosis

is there and advanced? However, if you or I or any of us show indication of

recent inflammation where there hadn't recently been a problem, I can see why a

biopsy would be helpful. A liver biopsy isn't entirely without risk, and

especially it could be risky to those of us who have been taking

immunosuppressants (Imuran and Prednisone). Also, with liver disease there is

the ongoing problem with high prothrombin (blood clotting) time.

From what I've read within this group, it's possible to have cirrhosis

developing or progressing and or inflammation developing while labs appear

basically normal. I have had umpteen LFTs in the past two years and the one

factor that has always been abnormal is GGTP. Last test 3 weeks ago, all was

normal except for the usual GGTP elevation, high cholesterol and glucose. My

Hepatologist has commented that's to be expected since it's been established I

have liver disease. The labs merely confirm it.

I don't think you can develop cirrhosis without inflammation at some point, but

you can have inflammation without cirrhosis. Your doctor probably wants to

make sure that withdrawal of meds doesn't result in inflammation starting up

again.

About calcium - regardless of your age, if you're taking Prednisone, you need

to take supplemental calcium. I think that the " usual " dose for most people is

1200 mgs. with either Vitamin D (400 units daily) and/or magnesium. I'm not

clear about whether you need BOTH Vit. D and magnesium, however. I've just

learned that both of them are used to help the body absorb the calcium. Also,

as others have mentioned, the body can't absorb more than 500 mgs. of calcium

at a time, so if you are taking 1200 mgs. daily, break it up into three

different times daily.

Here's where it gets tricky. If you have a family history of osteoporosis

(mother, grandmother, etc.) you already understand that you are at higher risk

than average. I've known this for years and I've taken hormones for nearly 30

years, both pre- and post- menopause (in my case, hysterectomy since I never

did go through menopause.) I was always told that I would absolutely NEVER

develop osteoporosis because of the hormones. No one considered I'd ever be on

long-term corticosteroids.

Three months after I started taking Prednisone my bone density was above

average for a woman my age and even for women 1/3 my age (!!!!) It took a

little more than a year for osteoporosis to develop and for nearly 30% bone

density loss to occur. At first I thought it was a much smaller loss, but I've

since been told it was considerably worse than I'd realized.

My doctor has now told me to take 1500 mgs. of calcium daily and 800 units of

Vit. D. I continue to use Climara, a patch for hormone replacement. The patch

bypasses the liver. I also am now taking Miacalcin, a nasal spray for bone

density loss replacement. In a month or two, I'll start taking a different

drug (for the life of me I suddenly can't remember the name but several people

here are familiar with it.) The one drug will act both as a " natural " hormone

replacement and also as a treatment for osteoporosis and will rebuild bone

density. At that point, I no longer will need Climara or Miacalcin, though I

imagine I'll continue taking extra calcium.

If your doctor has his act together, he or she will order regular bone density

tests. Mine didn't. I had to pursue the test on my own and it's a good thing

I did. Normally, every 14 months is often enough according to an

Endocrinologist I've seen. I don't know how often someone who already has

osteoporosis is tested.

You can buy your calcium at almost any pharmacy or vitamin section of the

supermarket. The prices range wildly, so I'd suggest a discount store like

K-Mart or Walmart. Look for calcium that already includes Vit. D, but be sure

that the Vit. D is proportionate to the calcium - I'd guess equal to 200 units

of D to 500 mgs. of calcium. I haven't heard anything to indicate that

calcium is harmful to the liver and it has other benefits as well. My husband

was told by his cardiologist to take it for his heart.

Take care,

Geri

[Guest guest]

Hi Leona,

I'm hearing more and more about 5 mgs. of Prednisone for life being the

apparent magic number. It makes sense to me, since I think it basically is a

buffer against inflammation where Imruan is used to ward off the rejection

process.

I'm a little confused about all of this, though. My Las Vegas doctor, who

studied for his Fellowship in Hepatology under my Scripps (San Diego) doctor,

has intended to wean me off Prednisone entirely. In fact, I stopped taking it

last January but had to start back up when I had a severe adrenal insufficiency

problem. I've been at 5 mgs. for months and slowly but surely my body is

adapting so the muscle and joint pain isn't as bad as it was. I was looking

forward to going off pred entirely, but taking it slowly.

Then, I talked to the Hepatologist in San Diego, who basically calls the

shots, and he told me ABSOLUTELY I would have to take Prednisone for the rest

of my life. Further, he told me he was going to speak to my LV doctor to

remind him that this is how it's supposed to be.

Now, I have a new Internist who is getting in the middle of all this. He tells

me that he knows of people with AIH who have stopped taking both Prednisone and

Imuran years ago (couldn't be too many, since the disease hasn't been clearly

identified for that many years) and who are doing fine. He would like me to

stop taking both drugs. From the start, I've understood that Imuran is for

life.

Needless to say, I'd like to be able to listen to the two LV doctors who want

to see me off the drugs entirely. I'd like to find out if I can feel normal

again and even better, look normal without that extra 15 lbs. of fluid in my

midsection and hard telling where else. But, there is another part of me that

says that if I go off the meds, I become part of someone's speculative

experimentation. If it doesn't work to go off the drugs, I'm the one who will

be hurt. With such advanced cirrhosis, how much more scarring can my liver

tolerate?

I worry when I read about people who are taken on and off the drugs. It can't

be good for someone to stop taking meds, then have relapses and more

inflammation and scarring, start the drug cycle again, only to have the drugs

decreased and withdrawn, over and over. To me, it seems logical to simply stay

on as low dosage as possible, indefinitely. I've never taken more than 50 mgs.

of Imuran but my LV doctor told me to prepare for the possibility it will have

to be increased, even if I stop taking Prednisone. I really wish these doctors

who are treating AIH would put their heads together and get some consistency

in the way this disease is treated!!

Take care,

Geri

[Guest guest]

Geri, I agree, it can't be good for a person to keep going on and off of these

drugs. It seems like it would be so much better to be on a low dose, if it

keeps

you from having problems again. Lynn aih

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> Hi Leona,

> I'm hearing more and more about 5 mgs. of Prednisone for life being the

> apparent magic number. It makes sense to me, since I think it basically is a

> buffer against inflammation where Imruan is used to ward off the rejection

> process.

>

> I'm a little confused about all of this, though. My Las Vegas doctor, who

> studied for his Fellowship in Hepatology under my Scripps (San Diego) doctor,

> has intended to wean me off Prednisone entirely. In fact, I stopped taking it

> last January but had to start back up when I had a severe adrenal

insufficiency

> problem. I've been at 5 mgs. for months and slowly but surely my body is

> adapting so the muscle and joint pain isn't as bad as it was. I was looking

> forward to going off pred entirely, but taking it slowly.

>

> Then, I talked to the Hepatologist in San Diego, who basically calls the

> shots, and he told me ABSOLUTELY I would have to take Prednisone for the rest

> of my life. Further, he told me he was going to speak to my LV doctor to

> remind him that this is how it's supposed to be.

>

> Now, I have a new Internist who is getting in the middle of all this. He

tells

> me that he knows of people with AIH who have stopped taking both Prednisone

and

> Imuran years ago (couldn't be too many, since the disease hasn't been clearly

> identified for that many years) and who are doing fine. He would like me to

> stop taking both drugs. From the start, I've understood that Imuran is for

> life.

>

> Needless to say, I'd like to be able to listen to the two LV doctors who want

> to see me off the drugs entirely. I'd like to find out if I can feel normal

> again and even better, look normal without that extra 15 lbs. of fluid in my

> midsection and hard telling where else. But, there is another part of me that

> says that if I go off the meds, I become part of someone's speculative

> experimentation. If it doesn't work to go off the drugs, I'm the one who will

> be hurt. With such advanced cirrhosis, how much more scarring can my liver

> tolerate?

>

> I worry when I read about people who are taken on and off the drugs. It can't

> be good for someone to stop taking meds, then have relapses and more

> inflammation and scarring, start the drug cycle again, only to have the drugs

> decreased and withdrawn, over and over. To me, it seems logical to simply

stay

> on as low dosage as possible, indefinitely. I've never taken more than 50

mgs.

> of Imuran but my LV doctor told me to prepare for the possibility it will

have

> to be increased, even if I stop taking Prednisone. I really wish these

doctors

> who are treating AIH would put their heads together and get some consistency

> in the way this disease is treated!!

>

> Take care,

> Geri

>

>

> ---------------------------

[Guest guest]

,

My doctors have told me that when we are taking 7.5 mgs and less Prednisone,

the negative side effects will disappear. What they didn't tell me is how long

it takes. Got the impression that it won't happen overnight, and I still have

the puffy stomach though the rest of me almost looks human again. However, I'm

not sure that the stomach isn't caused by ascites and liver disease, not

Prednisone. I'm willing to lived with low dosage pred to maintain remission,

though I'm often tempted to ask for a higher dose to decrease some of the joint

pain. Life is full of tradeoffs, isn't it?

Take care,

Geri

[Guest guest]

In a message dated 2/14/00 5:07:50 PM Eastern Standard Time, tlizzy@...

writes:

<< www.freedompressonline.com supposedly includes a health food store locator.

I ran it past my PCP today, and her only concern would be med interaction,

so I have to check on that.

Sue

>>

Sue, I take a compination of Enzymes for pain and Inflammation and am also on

various medications. I am not having any medication reactions that I know of

and the enzymes have helped me with pain & inflammation as I couldn't take

the NSAIDS because of Kidneys. Carol F.

[Guest guest]

CLO is helpful with inflammation, esp. in combo with butter oil. Turmeric

too. I was taking turmeric but it gave me gas (funny how when you eat well

you don't get gas, burps, hiccups or other that " normal " stuff). I think

you're supposed to take turmeric with a digestive aid, like bromelain.

elaine

> Hi

> Does anyone know if there is a particular nutrient,

> fatty acid, mineral etc that prevents inflammation?

> Or is there something that causes it? Eg dairy?

>

> I am trying to find out why my fibrocystic condition

> has flared up again after several months of no

> symptoms.

[Guest guest]

Is anyone concerned about getting too much vitamin D with cod liver oil?

The reason I ask is that Dr. Mercola who is a big promoter of vitamin D and CLO

cautions against overdosing on vitamin D which he says is very easy to do.

Thoughts anyone?

Elaine <itchyink@...> wrote:

CLO is helpful with inflammation, esp. in combo with butter oil. Turmeric

too. I was taking turmeric but it gave me gas (funny how when you eat well

you don't get gas, burps, hiccups or other that " normal " stuff). I think

you're supposed to take turmeric with a digestive aid, like bromelain.

elaine

> Hi

> Does anyone know if there is a particular nutrient,

> fatty acid, mineral etc that prevents inflammation?

> Or is there something that causes it? Eg dairy?

>

> I am trying to find out why my fibrocystic condition

> has flared up again after several months of no

> symptoms.

[Guest guest]

>Hi

>Does anyone know if there is a particular nutrient,

>fatty acid, mineral etc that prevents inflammation?

>Or is there something that causes it? Eg dairy?

Dairy, gluten, and corn all get me inflammed, usually on my joints.

They got hot, red, and swollen. I've been told by folks with gut

issues that MOST gut issues will cause joint inflammation ... I know

someone who treats hers with Pepto Bismol (it's her shoulder that

hurts, but Pepto cures it!).

CLO is supposed to help inflammation (see the post I sent today

on arthritis). I suspect red wine or berries would help too.

Heidi Jean

[Guest guest]

--- Elaine <itchyink@...> wrote:

>

> CLO is helpful with inflammation, esp. in combo with

> butter oil. Turmeric

> too. I was taking turmeric but it gave me gas (funny

> how when you eat well

> you don't get gas, burps, hiccups or other that

> " normal " stuff). I think

> you're supposed to take turmeric with a digestive

> aid, like bromelain.

> elaine

Thanks Elaine

I've been taking CLO religiously. The pain came back

anyway.

I very rarely eat turmeric, but I might try a few

recipes with it and see if it helps

Thanks

Jo

___________________________________________________________ALL-NEW

Messenger - all new features - even more fun! http://uk.messenger.

[Guest guest]

--- Heidi Schuppenhauer <heidis@...>

wrote:

> Dairy, gluten, and corn all get me inflammed,

> usually on my joints.

Hmmm, corn is a possibility. I do have it about once

a month - corn on the cob.

(Oh, and I've had it a LOT recently - discovered

freshly popped corn drizzled with melted butter and

honey is just the BEST comfort food! Not very NT

though)

> They got hot, red, and swollen. I've been told by

> folks with gut

> issues that MOST gut issues will cause joint

> inflammation ... I know

> someone who treats hers with Pepto Bismol (it's her

> shoulder that

> hurts, but Pepto cures it!).

>

Pepto must be just about hte easiest thing I could try

to improve my digestion, and do you know, I haven't

got around to it yet!! I really, really MUST get to

the chemist and buy a bottle.

Jo

___________________________________________________________ALL-NEW

Messenger - all new features - even more fun! http://uk.messenger.

[Guest guest]

> Re: Inflammation

>

>

>

>

>>Hi

>>Does anyone know if there is a particular nutrient,

>>fatty acid, mineral etc that prevents inflammation?

>>Or is there something that causes it? Eg dairy?

There are several...EPA (fish oil is a good source), antioxidant enzymes

(AOX/PLX), ginger, turmeric, garlic (I think), and several other herbs.

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

http://members.bellatlantic.net/~vze3shjg

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

http://www.westonaprice.org

----------------------------

" The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times. " --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

<http://www.thincs.org>

----------------------------

>

[Guest guest]

----Original Message Follows----

From: " Pat " <chiyekos@...>

1raptor: may i have permission to pass on your information to the cfs

research group

on ? think they would find it interesting. thanks pat

Sure, that's ok.

Cheryl

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Note: forwarded message attached.

---------------------------------

Mobile

Take with you! Check email on your mobile phone.

[Guest guest]

I believe the reason that you feel the herx is the die off but also the

inflammation around the body gets worse with the antibiotic..

remember that lyme is also a disease that has a inflammatory cascade....

eric

wtptoo <wtptoo@...> wrote:

Herxing is an assortment of symptoms caused by neurotoxins that are

released with spirochetes die off. Part of it is toxins caused as a

by-product of the organism dying & decaying in the body and it is

also thought that spirochetes will sometimes excrete a toxin as a

sort of self defense when the antibiotics or immune system goes

after them. The reason they would release the toxin is to make you

hurt enough to not want to continue the antibiotics that are hurting

them. That is current conjecture at least and not proven beyond

shadow of a doubt. It's said only those with syphilis or Lyme will

herx.

The first herx usually starts out and a person thinks they are

coming down with the flu or a cold. If the abx is working well it

usually leads to severe pain and usually in joints, especially the

knee. The neurotoxins also affects the central nervous system.

[Guest guest]

raises a great point. That is that not only are we battling

Lyme but we are also battling the affects of antibiotics on our

body's. Some times the antibiotics cause symptoms that are similar

to Lyme (stomach problems, tiredness...) as well as the affects of

yeast in our system.

The advice I got is that a person really won't feel 100% themselves

until about 6 months to a year after they complete any long term

antibiotic treatments.

That's ok with me as long as the Lyme is gone!

Be well,

> Herxing is an assortment of symptoms caused by neurotoxins that

are

> released with spirochetes die off. Part of it is toxins caused as

a

> by-product of the organism dying & decaying in the body and it is

> also thought that spirochetes will sometimes excrete a toxin as a

> sort of self defense when the antibiotics or immune system goes

> after them. The reason they would release the toxin is to make you

> hurt enough to not want to continue the antibiotics that are

hurting

> them. That is current conjecture at least and not proven beyond

> shadow of a doubt. It's said only those with syphilis or Lyme will

> herx.

>

> The first herx usually starts out and a person thinks they are

> coming down with the flu or a cold. If the abx is working well it

> usually leads to severe pain and usually in joints, especially the

> knee. The neurotoxins also affects the central nervous system.

>

>

>