Antifungal update (long)

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Hello All,

It's been a while since I last updated you guys and I am sorry for the

delay, but I've been doing pretty good and when I'm doing " pretty good "

I find myself busy busy busy having a life!

Let me backtrack a minute. At the beginning of July I started this

protocol with 300mg of Allopurinol TID (three times a day) for one week

and also started Metronidazole 2000mg two consecutive days a week

(thursdays and fridays for me). Within one week I had almost 75%

improvement of RA symptoms! Within 4 weeks I would say I was at 90%! I

continued metronidazole through the initial 6 weeks and then I did

another round of allopurinol as well. The metronidazole continually

produced herxheimer (or a herxheimer-like) reaction every time I took

it, starting about 24 to 36 hours after dosing and lasting about 48 to

72 hours. This was leaving me with about 3 " good " or even " great " days a

week.

After 12 weeks on metronidazole it seemed to stall a bit. I would even

think I was no longer at 90% but more like 85% (minor step back). As I

reread the research on this protocol, the drug Clotrimazole kept coming

up as the true drug of choice for this treatment. I was able to convince

(one of) my doctor to prescribe clotrimazole even though I would need

the prescription compounded (meaning that pill and capsules are not

available and the pharmacist would need to buy the " raw " power and make

up capsules himself). So after 12 weeks of metronidazole I took my first

dose of clotrimazole.

Wow, what a herx! Again it took 36 to 48 hours to hit me this time, but

it was a doozy! Swelling and pain like i haven't had in over a year! At

least the nausea wasn't nearly as bad with clot. vs. metro. But the herx

was just brutal. It was so bad that I just could bear to take the next

dose on schedule. I waited almost a whole week before I would dose

again. Another disturbing event is that when I would take the

clotrimazole, it would produce burning during urination for several

hours after dosing.

I was able to take 2 more doses (further spaced apart then just one

week) before I decided to stop for a little while. I had a trip to

Europe planned (back when I was at 90% of course!) and I didn't want to

be a big mess for my vacation. I stopped taking clotrimazole about 3

weeks before I left the country. By the time I left, I was back to

80-90% with the exception being my knees. They really stink! Since I

knew walking was going to be a big part of my trip I asked my doc what

we could do. He suggested (he's not a rheumy so I would not ask nor let

him inject my knees with kenalog or any other such substance) I try a

" medrol dose pack " which is basically 21 4mg pills of prednisolone. You

take 6 pills the first day, 5 the second, 4 the third and so on until

you take none. Well the pred worked wonderfully. I actually had a few

days in Europe where I don't think I thought about RA at all! I got the

holiday I truly needed.

Well of course after the steroids wore off I had a bit of a rebound

effect to deal with, but it only lasted a few days and I was left

feeling about 90% again!

Once this happened, I dosed with clotrimazole again.

Same story, brutal herx, lasting a little over a week.

Meanwhile, something else was cropping up. During my very first visit

with the doctor that is prescribing the antifungals, he performed a

urinalysis. Traces of blood was discovered (hematuria). 6 weeks later on

my second appointment there was still some blood, but not as much as

before. My doc decided that it might not be a big deal, but decided that

we would watch it closely. Approximately 12 weeks later at an

appointment, again blood was discovered but it was more than previously

found. Now my doc decided I should have this looked at closer. So I went

back to my HOM's " primary care physician " and updated him on all I was

doing and my progress (the doctor prescribing the antifungals is not on

my insurance so I pay for him out of pocket). My PCP wanted me to see a

Nephrologist (kidney doctor) so we made a appointment right away for

after I got back from Europe. Of course we are all thinking NSAIDs are

to blame for the kidney troubles.

Anyway, flash forward to Europe about my 3rd day there I go to the

bathroom and urinate blood, and I mean visible blood. It's was pretty

daunting to be so far from home and having a red stream come out of your

body like that. I immediately stopped using naproxen as I suspect it is

the culprit. After about 24 hours the urine started running clear again

and I was able to fully enjoy the rest of my vacation.

A few days after my return I dosed clotrimazole again (see above) and

with the massive herx I started using naproxen again. A few days later,

more visible blood. By the way, I have no other signs of renal failure,

no increased frequency and no burning during urination (clotrimazole

ingestion aside). I contacted my nephrologist and he said that it would

probably be OK until I could get in to see him (which is tomorrow). So

hopefully I will learn more very soon....

Anyway, enough about kidneys, but if anyone has had this problem and any

insights, I'd love to hear about them.

Since the clotrimazole causes the burning during urination, I decided

not to take anymore until I discussed this with the nephrologist.

So the question remains, where am I and how am I doing?

I am doing great (I think!) My knees being the big exception. below is a

chart to show progress...

Body Part Before Anti Fungals After Antifungals

Right Hand 50% 100%!!!

Right Wrist 50% 100%

Left Hand 30% 90%

Left Wrist 30% 85%

Right shoulder 50% 99%

Left Shoulder 50% 95%

Right hip 30% 100%

Left hip 50% 100%

Right foot 80% 100%

Left foot 30% 95%

Jaw 70% 100%

Chest (where ribs meet) 70% 100%

Right elbow 50% ??

Left elbow 50% 40%??

Right knee 10% 60%

Left Knee 0% 0%

As you can see the progress is fairly dramatic and I am thrilled! The

two big issues are the knees which quite frankly just suck and my

elbows. The elbows are a funny thing as I have some severe bursitis in

the left one (looks like i have a gold ball attached to it) and almost

no change in the right one, but neither hurt at all. I wanted my rheumy

(Dr. Kempf) to aspirate the left elbow last time I saw him, but his

feelings were hurt that I had gone to another doctor and had major

improvements without his help (I call this him being a jackass), so he

refused any treatment until stopped using the antifungals. I am

switching rheumies as soon as I can find another in my insurance plan

that will work with me.

So again I am just thrilled with my progress. I was a little

disappointed at first when I realized that these antimicrobials were not

going to knock the whole disease out (plus I was blinded by those damn

knees!) but once I started looking at other parts of my body I truly

realized how much better off I was as a whole then when I started. I

kind of wonder about the theory that this disease retreats down the same

path it came on. If that's the case, then I am right on target (knees

were first with me and elbows second).

What will I do next? I first want to thank a for all her posts on

Dr. Nicholson as I plan to follow his idea of switching antibiotics

every 6 weeks or so. I now plan on a 6 or 12 week course of IV cleocin.

Then I may try another 6 weeks of clotrimazole or maybe clarithomycin or

maybe zithromax or maybe ciprofloxacin or on and on, you get the idea.

There are plenty of choices in antibiotics that seem to work against

mycoplasmas and since I've had such good luck thus far, I don't see why

I should stop now. I have not and will not stop my minocycline, that

feels like the anchor of this whole treatment, but I also won't stop

trying other antimicrobials until I have kicked this disease to the

side!

So that's where I'm at.

Any comments or questions are welcomed!

Take care all!

j.

ps - yes, i had a blast in Europe!

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

ph A. Graff

Director of Digital Prepress

Graphic Communications, Inc.

(301) 599-2020

" The truth will set you free, but

first it will make you miserable "