Re: Looking for THINKERS - Jelly

[Guest guest]

If we aren't herxing, then what the heck can we call it?

> Herxing preceeds getting well, right?

Hi Jelly...

Sorry I didn't get involved sooner (family crisis), but am finding

this very interesting.

Was originally diagnosed with RA 14 years ago but was " ill " with

many symptoms for many years prior. Had Mycoplasma Pneumonia 15

years ago, tested highly positive to Lyme and Babs 18 months ago.

LLMD figures I've had Lyme for many years.

a few similarities so far...

I tried low-dose Minocin for well over 2 years per Roadback, but

have yet to find anyone with a similar experience. I became very

inflamed (multiple joints), flu-like symptoms, muscle aches,

cognitive problems etc on 100 mg Minocin 3X per week and dropped to

25mg. It took a year to increase to 100 3X/week...I 'tolerated' this

but continued to " react " to each and every doseage. There was a

break of one year from Minocin (other abx) and I restarted 6 weeks

ago taking 50 mg BID after Babs tx. I deteriorated steadily from

being able to walk several kilometers to less than a block in 6

weeks. I stopped the Minocin as an " Aha " after reading your posts a

couple of days ago and already I have less inflamation.

I have attempted high dose but am flat on my back immediately.

I have had difficulty with all antibiotics/antifungals (Diflucan,

Clindamycin, Mepron/Zithromax). Tinidazole caused a major

inflammatory flare that has been ongoing for 2 1/2 years causing

damage.

I also have dx MVP. Tachycardic symptoms (resting HR of 108-120)

resolved with appropriate thyroid/adrenal supplementation.

I just saw my LLMD today and he had no answers so took me off

everything.

I also have definite improvements over time (although my gains

aren't as dramatic as yours), it just has been difficult every step,

now almost 4 years later.

So......I would love to understand this also....I've not called it a

herx for quite a while as 'it' never has improved over time,

however, what do we call it?

Robyn

[Guest guest]

We are similar in many ways. It sure feels like what is described as

a herx. But often it is said that you will feel better eventually

and I guess I do, but then I increase the dose by a couple of mgs

and then I feel crappy again. But definetly stop the ABX all

together and I am better then I was before the last dose, and what

ever we call it that is the direction I want to go.

infections , " onrwayca "

<mikenrobyn@...> wrote:

>

> If we aren't herxing, then what the heck can we call it?

> > Herxing preceeds getting well, right?

>

> Hi Jelly...

>

> Sorry I didn't get involved sooner (family crisis), but am finding

> this very interesting.

>

> Was originally diagnosed with RA 14 years ago but was " ill " with

> many symptoms for many years prior. Had Mycoplasma Pneumonia 15

> years ago, tested highly positive to Lyme and Babs 18 months ago.

> LLMD figures I've had Lyme for many years.

>

> a few similarities so far...

>

> I tried low-dose Minocin for well over 2 years per Roadback, but

> have yet to find anyone with a similar experience. I became very

> inflamed (multiple joints), flu-like symptoms, muscle aches,

> cognitive problems etc on 100 mg Minocin 3X per week and dropped

to

> 25mg. It took a year to increase to 100 3X/week...I 'tolerated'

this

> but continued to " react " to each and every doseage. There was a

> break of one year from Minocin (other abx) and I restarted 6 weeks

> ago taking 50 mg BID after Babs tx. I deteriorated steadily from

> being able to walk several kilometers to less than a block in 6

> weeks. I stopped the Minocin as an " Aha " after reading your posts

a

> couple of days ago and already I have less inflamation.

>

> I have attempted high dose but am flat on my back immediately.

>

> I have had difficulty with all antibiotics/antifungals (Diflucan,

> Clindamycin, Mepron/Zithromax). Tinidazole caused a major

> inflammatory flare that has been ongoing for 2 1/2 years causing

> damage.

>

> I also have dx MVP. Tachycardic symptoms (resting HR of 108-120)

> resolved with appropriate thyroid/adrenal supplementation.

>

> I just saw my LLMD today and he had no answers so took me off

> everything.

>

> I also have definite improvements over time (although my gains

> aren't as dramatic as yours), it just has been difficult every

step,

> now almost 4 years later.

>

> So......I would love to understand this also....I've not called it

a

> herx for quite a while as 'it' never has improved over time,

> however, what do we call it?

>

> Robyn

>