Has anybody seen this movie? Its about a girl with chronic illness ( cancer) who is going to die. As a coping stratagy she dates 1 screwed up man per month and dedicates her full strength and unselfish emotional capacity to loving him, being real with him and teaching him to love. At the end of the month , she has changed his life for the better becauase she has helped him see himself and change his narcissistic ways. Finally, she abruptly leaves him on the 31st of each month and moves onto the next subject with the justification that that she has forever changed each mans life for the better.

I did a pulse last week. I lasted 3 days and then barfed a bunch and gave up. 400 doxyi is a problem with pulsing but i dont know what else to do because what if this is lyme? Im going to attempt another pulse next month and im going to do a better preperation.

Today i feel really really down, just because this whole situation just sucks. Im tired of being judged by people, because nobody knows why im not working, nobody knows how much i suffer, nobody knows how damn strong i am to go through all this crap, and all i get is looked at like im some unmotivated weak life failure. It kills me because who i am is so far from what ive become and this quality of life that im living is more than any human should have to bare.

The MRI scheduled for me in nov is without gad. I dont know how i feel about this. Why would he do it without the gad? I was thinking that without the gad he could use that as his reasoning as to why the scan does not appear as active... could that be possible. Gad enhances the lesions correct?

I took 12 days of keflex and it didnt cure the bladder infection. I have ovarian pain now as well as frequent urination so I know that this is into my pelvis. The keflex did seem to be working somewhat but it only worked until I stopped taking it. I had to stop because my butt was bleeding.

Im really angry because I made the mistake of going to that relatives house ( the one with chronic bladder infection) when i know im immunei compromised... what was i thinking? I know thats where i caught this because this has happened a few times before. Im never going there again. My cousin also caught it last week as well, she is on ofloxin

I am currently now doxyi 400 mg and zithro alternate days. I am tolerating it fairly well but I havnt done a pulse yet since the upgrade to 400 doxy. Just wondering what should i do in this case. I know i cant technically get professional opinions from you all but i consider all of you professionals in cpn so I want and need those opinions with whatever rationale you have behind them. Many of you are far smarter and more knowlegeable than most dr's on this topic so i consider all of us here to be the professionals.

Doxy isnt causing porpheria per say but I do feel extra bloating of my tummy, I figured its maybe because i get lazy sometimes at my nite dose and lay down too early. Its nothing bothersome though, just sore a bit. Im hoping its not liver related.

Cpni does live in my oral cavity. It was confirmed by CPR of the granulation tissue from my jaw. Everything else was negative including candida, mycoplasma and staph. Thats just insane.

Although Im doing well right now, I feel discouraged because I wonder at what point does cpn have a hold on you where you cant escape it ever.

The msi clinic finally called me back and booked my MRI. I do know that just based on the way i feel now compared to before that the mri will show less activity, so Im curious to see whether dr stupid #2 will actually acknolege the abxi as the CAUSE of the improvement, Yes I said CAUSE- For any professionals reading this. I need to say it again "CAUSE" of the improvement. Just making that clear.

Hello, Im still alive

Here are some updates. After the surgery I went to my inf/internal med dr ( the good guy ) and he thought that it might be better to treat me for anerobic issues with long term clindamycin instead of treating me with doxyi/zithro, so i got a script for clindamycin and proceeded to go off the doxy/zithro ( all as a trail of course ). Within 2 days I had chronic fatigue symptoms, severe itching, nasal and sinus itching and swelling, muscle pain and mild facial rash. Ofcourse i went back on the doxy/zithro and i was better within one day of reinstating the doxy and zithro. ...Cpni lives on?

The only problem I have is that the cap combo plus the clindamycin is really hard on my stomach.

I wish i could give you exact details of the findings in my surgery but the truth was that i was too " stoned" on ativan to remember very much. Here is what i know

Apparently there was a hole in the bone that stretched from the tooth that rotted into my face when i was 17, 2nd tooth from the back ( root area near the top of cheekbone ) which extended all the way down to the front tooth. I got to see it on video screen as the surgery was being done. It was like a tunnel

Apparently there was some communication at some point in the tunnel between my sinus and the tunnel - i think that how he explained it

I have been on flagyli now for 2 weeks with zero incedent. I can feel the drug penetrating into my jawbone and its actually now localizing at the site where I had a tooth rot into my head when i was 17. There is an abcess in there too i guess, the bone really hurts in that one spot. This is the same phenomenum Ive been experiencing just before the pain dissapates at certain sites in my facial area. At one point it was nasal bones and the area of the big bite and also the facial blow but now they are almost ok.

Disclaimer and warning

A few updates first

So I now have 3 drs officially on my " so stupid its dangerous to patients" list. The first is my MS specialist at the MS clinic at st Mikes, the second is the infectous disease dr at T.O gen and the third is the dentist at the facial pain clinic at MT siani. (<- in canada not the one in new york)

All stupid, incredibly stupid, no words stupid. Yesterday i went to an app at the facial pain clinic... and here are some things he said:

"How do i know that the dentist took pus out of your  bone... unless i saw it myself, I dont believe anything dr ***** says"

"Who is doing this dental surgery, oh let me guess the great and powerful Dr ***********?"

As usual, Ive recovered from the flagyli and Im functioning again. I have an app on jun 23  for investigative dental surgery. Im excited about it and I think it will help but hes not going as far with it as i would have liked him to. Hes going in above a root canal i have already and snipping it and then proceeding along the bone to the east and west of it 2 teeth over. This will help Im sure, but i wish he was going across the whole upper jaw because I know the whole thing is infected all the way across the front.. but Ill take what i can get right now and something is better than nothing.

My pulse was a nightmare. I quit 2 days ago and as usual coming off the pulse made me extremely ill. It started with tremors, then spasms, then led to wretching, then led to wattery diaherea, then crying,  then led to severe facial numbness and pain, and then led to the hospital and then the the good news..... yes there is some good news...

 MY NEUTRIPHIL COUNT IS NORMAL!

After umpteen years of neutropenia.. the hospital bloodwork showed I had a normal neutriphil count of 2 :) Although 2 is the very low end of the normal interval, but at least it can be documented as "normal". My wbc differential is still low at 4.5 but Im hoping its just a mattter of time as well

Just an update from pulse two. I feel like death, nothing really hurts except everything... I feel poisened. I had an attack last night of what im going to affectionatly label "suicide psychosis". I just feel poisened, really poisened, I didnt want to get out of bed this morning, my legs feel like fibro pain.... yes "flagyli induced neuropsychiatric brain poisening" thats what I have.

It really makes me think I have lyme... can Cpni porpheria or hsp60 or lsp really do this? Make me want to kill myself? Ill be honest because I have to...I psychotically cried myself to sleep and prayed to die last night.

Only 4 more days and Ill stop the flagyl... worth mentioning though 2 factors that probably contributed to this.

I was asked to create a quick update because last I posted I wanted doing very well, so here it is

My ibsi is gone, my facial pain is almost gone but i still have facial/nose jaw pressure which almost progresses to pain on my non zithro day.

I beat the bladder/kidney infection and I am not on avelox anymore just the basic capi.

I do not feel currenly suicidal as i did when I had porpheria from the flagyli and avelox but Its still a reality in the back of my mind should the pain ever come back as it once was.

I have tons of energy and I feel good but i do have to start flagly tomorrow so this will probably be my last happy post for a while

hope you are all well.. and thanks for all the support

Janie