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Post by Jeff on Jul 23, 2005 10:57:53 GMT -5
I decided to test a normal dose of zithro, mostly with the intent of eliminating it as a possibility, since it seemed like an unlikely prospect to us in an earlier conversation. However, I read an article by Dr. Harvey where he used it as part of a long term treatment, supposedly with success. What starts below is the journal so far. I know some of what is in it sounds contradictory, but it's important to report it as it is.
As a matter of background, I have taken zithro a few years ago, with no side effects or anything, so it is probably unlikely that anything reported is a side effect or reaction to the abx itself.
Day 1 (Thursday) - Took 250 mg in late evening.
Day 2 (Friday) - Took 250 mg a little earlier in the evening. Prior to taking Friday's dose, I had a bit of a head fog feeling - almost bordering on dizzy, noticed late in the workday and while driving home. After Friday's dose (dose 2), it seemed marginally worse. Nothing seemed to change regarding the black dots either embedded in the skin, or those on the surface of the skin after a shower. No changes noted with the lesions. One new mosquito-bite sized bump was noted on the back of my right shoulder, and one new one at the same location as an old one a few months prior was noted in the middle of my back. These in the past have preceded the dispersion of white dots and lesions. Two new unopened pre-lesions per day is a little more than what I would say the average is (average of about 1 new one per day over the past six months) in previous time periods, but within the range of normal expections (0-4).
Earlier in the day, resolving mostly later in the day, there was a dispersed low-grade itching of the legs, and slightly higher grade itching of the shoulders. The itching was not as bad as the stinging and itching I get when I used to feel I was being "attacked".
Day 3 (Saturday) AM - Upon getting out of bed, there seems to be significantly more embedded black dots than in prior days. This is especially true in the arms and shoulders. These started to get red around them. About 2/3 of them would come out with scrubbing. Also some loose surface black dots that itched in the areas they were found on the left wrist.
This could be significant because the arms below the elbows were almost symptom free prior to this test, and since last week when I had started using the dae. I have continued the dae while on this test, so this recurrence of the black dot symptoms in the arms is pretty distressing.
Also this morning, there was one new mosquito-bite like bump with slight itching on my back, and a densely populated area of black on my left shoulder (just below shoulder where it joins with the upper arm on the outside).
No significant change so far in the existing lesions.
I am planning to go diving this afternoon.
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Post by Jeff on Jul 23, 2005 11:01:50 GMT -5
Saturday AM addition - I forgot to say that I note a decrease in the head fog, back to about baseline levels. This is despite getting probably an hour less sleep than usual.
Also, some itching and redness on the inside of two fingers. Usually when I find such areas, I will also find black dots not embedded, especially if I have scratched, but I haven't been in bright enough light to check for this yet.
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Post by Jeff on Jul 23, 2005 11:25:29 GMT -5
Correction to first paragraph of Day 2 - "white" dots should read "black" dots.
I was watching the Discovery show on white sharks while I was typing. ;D
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Post by Jeff on Jul 23, 2005 17:28:00 GMT -5
Day 3 (Saturday, 6:00 pm): Went snorkeling - just foggy headed enough that combined with the only 5 foot visibility (rain all last week creating lots of sediment and warming water causing lots of algae), I felt it wasn't entirely safe to dive without becoming disoriented. Will try again tomorrow.
Took 250 mg Zithro at about 5:00 pm. As you can tell, I'm migrating the times to earlier in the day gradually. Took the first one late at night because if anything bad happened, I didn't want to be at work.
Not much different to report from this morning as far as my condition goes. Seems like a lot of embedded black dots and lines compared to previously. This is especially true on my right thigh (front) and both upper arms where they meet the shoulders. Scalp is not perfect but pretty decent, as has been the case since putting dae on my scalp prior to bed for the last week.
Slight itching and stinging (the stinging is slighter than it was during, for instance, the first six months or so of this condition). The itching and stinging is primarily on the back, where the bumps described previously emerged, and on the backs of my thighs, the sides of my lower legs(greater than this morning and greater than prior to the beginning of this test), and on my upper arms near the shoulders (unchanged from this morning). Slight itching at the wrists, unchanged from this morning.
I am disappointed enough in this test already that I'd like to bag it and try the tetra, but the data will be more significant if I get at least a few more days in, so I'll muddle through. For all I know, it's actually working and the embedded black dots and lines are stuck, dead, or surfacing, but I doubt it. At any rate, this was not one of the meds that chemist thought there would be a high likelihood of success with.
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Post by jeffinhburg on Jul 24, 2005 9:22:39 GMT -5
Day 4 (Sunday AM): Practically no changes to report that I can notice. I think some areas are getting worse and then better faster than their normal cycles, but I'm not sure yet. Slight itching on my stomach, just below my chest, where I had black dot colonies embedded a couple weeks ago. Open sores seem to be heeling pretty fast, but for all I know, that could be secondary infections clearing or not coming about due to the abx.
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Post by jeffinhburg on Jul 25, 2005 10:18:42 GMT -5
Monday (AM) -
Amazing how little change there seems to be. More black dots on the left lower arm and the left uper arm near the shoulder. Pretty much the same everywhere else. The additional black dots and some lines seem to be mostly embedded in this area.
This is going to sound gross, but I happened to rub the back of my neck down to my shoulder blades this morning, and small black things came off on my hands, along with the dae I rubbed in last night.
Other than that, let me go over the last things I wrote, for comparison...(pause to read)...
The left wrist seems like it's cleared up - it's where I found a couple loose black dots and itching as mentined before...
The fingers are slightly better - don't want to speak too soon, but they are not itching now (except for where I accidentally ran a tool through my index finger yesterday "fixing" a small divelight - ouch).
Otherwise, mid back is the same, shoulders have increased embedded black dots and lines, as mentioned. Upper legs seemed to itch more than usual this morning, and a lesion there that might be new seemed extra swollen.
Lots of black dots/lines on the forearm midway between the elbow and the wrist. They are just deep enough under the top layer of skin that it would require too much scraping to get them out, and I don't want to do that at this point. I kind of want to see what they do....or maybe I don't.
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Post by jeffinhburg on Jul 25, 2005 19:08:22 GMT -5
Monday (PM) My hands are getting itchy in places again, but a significant percentage of the black dots (embedded) in my arms and shoulders scrubbed off pretty well in a cold shower about an hour ago. A couple old lesions are becoming inflamed, on the back of my neck near the shirt collarto the right shoulderblade and on the left side of my neck about 2 inches below the ear.
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Post by The good doctor on Jul 25, 2005 19:19:57 GMT -5
Just a thought I had. I am gonna try metro gel on my skin and see how it does. Flagyl gel.
probably not till next week though. Because the Flagyl works so well for me....It couldnt hurt if this is indeed bacterial.
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Post by Lisa on Jul 25, 2005 19:45:48 GMT -5
Jeff, do you have a microscope or magnifying glass to get a close look at the black dots that rub off? Sorry if you have ever mentioned doing so already in the past. I was wondering what it looks like in your opinion.
I've noticed in the last week, an old lesion that became a scar has popped up on me again.
Dr. Harvey had me take Zithro prior to my Lyme test, so that it would bring it out into my blood for accurate results.
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Post by jeffinhburg on Jul 25, 2005 20:50:43 GMT -5
Lisa,
Yes, we looked at it at several magnifications. The lower ones seem best, about 200X. There were three things going on.
There were some loose black specs taken off with tape - the tiniest, sort of in that they were two dimentional - that just looked like solid black no matter what I did to them.
The other loose ones - bigger - looked like bundles of fibers, usually in an oval-ish or kidney shape. Like when lint bundles, but much smaller than bundles of lint. I compared them to known sheet, towel and clothing fuzzies, and those fibers were all many many times bigger, and not as dark under the scope, even when they came from dark material. The fibers seemed black to me, but my gf said they were blue or blue-green. These were mostly found loose on my skin after taking a shower and air-drying.
Then there were the embedded, larger ones. They just looked solid black, in shapes from broken threads to round-ish. Could make nothing of them, but they tend to be seen in the skin (they are deeper than they look - have to take of a lot of skin to get to them, even though they appear to be on the surface) usually (if I don't get them out) preceding the development of a lesion.
The fiber ones come out more randomly with regard to lesions, but they tend to come out in large numbers in a relatively small - several square inch - area in any given couple day period.
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Post by jeffinhburg on Jul 25, 2005 20:53:06 GMT -5
WAIT A SECOND. Lisa, you have Dr. Harvey?? How'd you get that lucky? What treatment did Dr. Harvey prescribe for you?
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Post by jeffinhburg on Jul 25, 2005 20:54:11 GMT -5
"I've noticed in the last week, an old lesion that became a scar has popped up on me again."
It does seem like they live forever in the scars.
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Post by SpecueLatin on Jul 25, 2005 22:27:17 GMT -5
If you want to see what color the "black" things are, you might try putting something beside them that you KNOW is black.
I know there is still a light issue when you are using the scope.
spec
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Post by susiebelle on Jul 25, 2005 22:52:40 GMT -5
Jeff: When you talked about the black specks on your forearm it sounded exactly like my first major episode of my so called self mutillation. At the time I was working with microscopes and pointed tweezers. Not a good combination! When I went to company dr and asked him about the black spores he yelled at me that they were not spores and that was the beginning of my DOP. Anyway I still have about 12 huge scars on my arm that most people think are from burns. At one point I had to go to nurse's office to use restroom, because people were afraid I was contagious. My arm healed up when I took 3 mo of lamasil and steroid ointment, but it has b een 6 years and my right hand still keeps peeling. Ihave alot of tracks going from my cuticles along the side of my fingers, with alot of the pseudo skin built up on the bottom of the knuckles. Also have you tried any antihelimuth meds. I took a round a albendazole a few weeks ago and I think it has helped but I don't think I took enough to eliminate all of it. Did you ever have any of the red fibers? I did earlier but now they are mainly blue and some black. I'm going to try and post some of my pictures. Go to go and get my daily fix from Leno.
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Post by DOCP on Jul 25, 2005 23:10:19 GMT -5
Jeff / Lisa - I also went to Dr. Harvey. Good Doctors do exist. I started with Zithromax, tindamax, mepron and diflucan. I got worse immediately then back to normal... then slowly worse. Dr. Harvey suggested the i.v. rocephin but I opted to try oral abx first. So right before I was going to switch... is when I found lyme busters site and started reading Jeff's posts on Septra. Dr. Harvey so cool said no problem... we'll try the Septra with Cipro and up your diflucan. He said that's actually the first line of treatment with many LDs in Europe. He was willing to keep trying new things and said... the strains of BB can vary, as can the co-infections. He said that Zithro brings about success with many of his patients but he said... since I'm from Idaho the form or strain of BB may be more responsive to other meds.
Anyway, he's the nicest Doctor I've ever seen. Explaining so much and took several hours going over instructions and taking tests. Wish he lived nearby, but he's so far been awesome over the phone when I need to ask question or need something for nausea, etc. He only asks that I get a cbc ever so often and have results sent to him or have doctor here call him. I can't rave enough how wonderful he has been.
Jeff - Are you trying this zithro test by itself? Are you finished with the Septra? Wasn't it working well. I thought. It's been working for me.
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Post by SpecueLatin on Jul 25, 2005 23:24:43 GMT -5
Different Jeff entirely, docp
spec
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Post by DOCP on Jul 26, 2005 1:06:16 GMT -5
Wow Spec - so glad you let me know this. Good grief, no wonder... I was like... pick a case setting already. My bad. Thanks
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Post by Lisa on Jul 26, 2005 11:24:50 GMT -5
I saw Dr. Harvey one time in Houston before he moved to Del Rio. I now see Ginger Savely in Austin. I was doing the Rocephin injections for a while, but had to stop. It came to a point where the medicine wouldn't stay in...it dripped back out. My husband was giving me the shots in my upper hip/buttock region. I did have some slight improvement though.
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Post by jeffinhburg on Jul 26, 2005 17:35:37 GMT -5
Tuesday (PM) Things are getting a little odd, so I'll try to describe them. The scarring where the older lesions were is starting to get inflamed. I took a long-ish cold shower. I noticed in the shower that large chunks of the raised scarring (that wasn't as raised until today) would rub off rather easily when soaked, and that there was black stuff - some kind of combination of fibers and specks - exposed and also able to be rubbed off with the white scar tissue, which now I think isn't normal scar tissue because I can't imagine real scar rubbing of in chunks like that. I have so many big surgical scars that if that were the case, I'd be falling apart! ;D However, only some kind of top layers came off, not the complete scar from any lesion. Maybe about 15% of it from the two I worked on. Despite the very hot and humid day (which usually makes the stinging and black speck sightings much worse), I've had about an average amount of stings so far this late afternoon, which is the time of day they normally start. Just for the record, I upped my vitamin C dose yesterday, from a usual 1300 mg to 2300 mg. I will be up to 3000 today. My stomach feels weird, and bowels are loose, which could also be from the abx, but usually happens to me when I take large doses of C as well, so I'll stop at 3000 and let my body adapt for a while.
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Post by jodyann52 on Jul 26, 2005 17:55:05 GMT -5
jeff or anyone can viti c make blood sugar go up?im taking...2000mg just started. but i feel like my sugar is going to go to high.im already taking so much meds and insulin.i sure hope i can keep takeing the viti c..
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