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Stable is the best to hope for from my eyes. My mom was exposed to toxoplasmosis when i was still in there. My left eye has been legally blind since i was 10 and the right one keeps fighting the good fight. Toxoplasmosis is the one where they tell all the pregnant ladies to stay away from the cat box to avoid. Mom didn't have a cat. Probably a bit of undercooked meat or something. The only reason they know she was exposed was because of what happened to me.

I never get something normal....

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It hard to believe there is nothing that can be done for your eyes. With all the advances in medical science, etc.... Toxoplasmosis sounds pretty bad. There must be some seriously powerful crap in cat litter. Pregnant or not, people should wear gas masks or something.

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I guess the problem with it is it's a protozoa and takes up residence where you can't get at it. It goes off to sleep or some such thing but when it wakes up it inflames the retina (or wherever it takes up residence) and leaves scarring behind. Nowadays I take a lower dosage of the stuff they use to treat it just to try and keep it nailed down. That's because the ones in the right eye are now in the field of vision. used to be i could tell there was a problem because my vision changed but after they took care of it things went back to normal.

So far this lower dose antibiotic has done the trick.

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Fezo: Wishing that the antibiotic keeps doing the trick. Which antibiotic is it?

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Bactrim. It's an old one that is nicely in generic. Actually only used it once to treat because there was another one, rarer and with horrible side effects, that they had been using. Treating was always a lousy time - four different medications one of which was prednisone. no fun at all. I told the kids I was on my grouch pills.

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Well fezo-steve, you never know. There could be cures coming up. Stable is good, but there could be more good. When I got diagnosed twice with macular degeneration, from two diferent doctors, well, that was not fun. Usually I just try to 'handle' everything, but I went to a healing mass on this case, and last time I went to the eye doctor, he said there was NO macular degeneration. I'm still hoping it's alright. I really did feel something good happening there that day. I believe in miracles.

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Patti, that is an inspirational story about your eyes being healed. That's wonderful :)

Wow, Fezo...you really have had your share of medical issues. I hope it calms down for you and that the antibiotics work well. I bet your kids want you off the "grouch" pill :)
Hang tough...prayers are with you.

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Patti - good for you! Very good! We always think that macular degeneration is what slowly did in my mom. Because she had it they yanked the medical certificate on her pilot's license (she learned how to fly small planes at age 62!) so she couldn't fly solo at the time. This may have been the event that started her depression and once you have that and start into dimentia it's all downhill. I like your outcome way better!

Nightingale - the good news there is that the grouch pills are the ones when they are actively treating it. The ones to keep it away, which seem to do the trick, are fine.

Today I ended up at the ER. Should have been to the regular doctor but kept putting it off. Have had these regular headaches for several weeks now and since I've had ministrokes in the medical history I was concerned. Well, last night I couldn't keep food (or my medicine) down and it became a real concern. Took forever in waiting but about 5 minutes worth of tests put the worries to rest and I'm better on teh food front. I'm guessing the headaches are muscular and related to my balky cervical disks. Need to exercise them.

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Fezo: 'Balky cervical disks'? What exactly are they? Why are they 'balky'?

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Herniated disks. What they used to call slipped disks. Cervical 5 - 7. Discovered when it was hurting my right arm a year or two ago. I need to keep exercising to keep them more or less in place - not putting pressure on things. Problem has been with the hemoglobin problem the very last thing you want to do is exercise.

The good news at the hospital is the hemoglobin reading was OK. I might be getting somewhere. Meanwhile, I'm restarting the exercise and will check in about a little physical therapy for the neck.

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Started second round of the chemo treatment and they take my hemoglobin count - 11.2! Woo! Hoo! That's up and it's the highest it's been in two years. We will take that.

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woo-hoo!
great news indeed!

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Alright! Way to go Fezo! Prayers continue tho'.

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Can never have too many of the prayers! I have no idea how long I'll have to continue the chemo but this is indeed a good day.

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Fezo, I hope you are doing alright.
That was very sad to hear about your mom. I'm sorry. That must have been very difficult for your family. Whether I say anything or not, just know that pray. Praying is something I do regularly, and well, I am one of the people that pray for you.

... actually, your post also about your mom got me a little worried about my mother. She is 75 and sometimes I'm concerned she may be depressed. She doesn't want to do much sometimes. I know she's 75 and doesn't have to do a whole lot of jumping up and down if she doesn't want to, but,... you know.
That is so cool that your mom learned to fly small planes at age 62!

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Fezo-Steve - My thoughts and prayers continue to be with you. You certainly are fighting the good fight - on more fronts than one should have to. One thought on the discussion of cervical discs gone awry: are you looking at a cervical fixation ? And have they discussed cervical stenosis with you ? I am only curious , as I may have some thoughts for you, perhaps off-line in a PM ? I could share some thoughts with you in specific, especially if a D.O. or a D.C. wants to do a manual "twist/crack/adjust" on your neck. It has proven to be a very undesirable thing if you are posessed of herniating discs, or are further beleguered by stenosis. IMO to be avoided at all costs - the "adjustments". I'd be happy to share info with on this.

I am sorry to hear of your mothers' conditions, and of your 'inherited' toxiplasmosis problems. I'll surely continue to keep you in mind. Take care - and I am glad you went to the E/R when you were concerned about the headaches and mini-strokes. Keep us updated !

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This is GREAT!!! I'm happy for you :). I'm coming in from the other direction, lol. From a high of around 17 ish 5 years ago, my January count in my pre-op CBC had me finally in the normal range at 15.5. Just .3 from being high -but I'll take it!

Hope you don't need too many more of the chemo treatments?

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All the best to you both fezo & podunklander ! :)

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Ya know, Pam, you're the second person I know with too much hemoglobin. Talk about a foreign concept to me! Cool that it's in range.

I am approaching four weeks since transfusion. I can almost guarantee there will be on in the upcoming week but we're heading in the right direction.

All of my various chronic things are ones that can be treated as opposed to cured. As long as they keep me going I'm fine with that.

Thanks, all, for the good thoughts.

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I'm thinking good thoughts your way -that you may not need that transfusion, that you stay well and continue to do so.

I do feel fortunate that I have a chance to be cured because I've about had it with all the chronic symptoms that keep popping up and specialists, treatments and surgeries. All which most likely could have been prevented years ago.

The latest thing that came up (low chronic DHEA...lower than in the 70-80 year old range) and adrenal dysfunction -if not that a friend asked me what caused this (DUH...I hadn't even thought about it) and asked me if it might be related to Lyme. I would have never considered this in relation to Lyme, and found that it's called "type 2", which is commonly found in Lyme patients.

Halting the Lyme arthritis with the antibiotics and I'm taking DHEA supplements and hoping that perhaps it will re-build bone/cartilage.

Finally read the surgical notes from the thumb surgery I had...as well as a letter the surgeon sent to my PCP ...where he stressed his concerns about the condition of my bones...and also cited the fact that I had a total hip replacement at a very young age, etc. And he also wasn't able to repair the bone in my right thumb :(. I'm kind of pissed off that my PCP ignored the concerns in this letter...well until recently anyway.

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Just to throw something new into the mix....

A couple of years ago I was diagnosed as pre-diabetic. For quite some time things pretty much held at that. Well, in the last six months to a year the glucose number has gone berserk. Looks like I'll be starting insulin in the very near future.

Part of this seems an awful lot like just one more thing to me. I still plan to live to be 100. I do think however that this will be the call to drop weight and build some muscle. I'm not going to be Charles Atlas or anything but less flabby and such has got to help.

On the good side my cholesterol has gotten so low that I'm being kicked off the medication for that.

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Hey Fezo Steve,

I found this video just last week. :biggrin:
This guy is someone I used to watch about everyday, and workout with years ago, and he really helped. I got in great shape. It seemed funny to me when I found this video. I better subscribe.

http://www.youtube.com/watch?v=gOHYlL0wW3k

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grrrrr me too :(. I'm getting hyper and hypoglycemic swings but that should get straightened out with the treatment for the adrenals (which includes dietary -protein, cruciferous veggies :rolleyes:, pathetic acid (pantethetic...that is, B5) and vitamin C along with DHEA supplements. And I'm forcing myself to not go so long in between meals by doing mini's. I bought the little boxes of Newman's Own organic raisins at Wallyworld (cheap)and other healthy snacks and I make sure to keep some with me at all times.

And so because I've been eating more..I've put on weight :(. Yesterday, I did the "Master Cleanse" ...not to lose weight but for the liver detox...but I lost 2 pounds :biggrin:.

But there was NO way I could go to bed hungry and figured I made it well past 24 hours and treated myself to a big bowl of steel oats and a handful of grapes at 3am.

We're obviously in no condition for duckpin bowling! But dammit I'm determined to be running around and playing with my friend's kids and grandkids at the end of the month!!! I couldn't even run away from the bubble-gun toting wee one's last time I was there -so I just let them bombard me from head to toe :(!!!

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Pam, we have to stop one upping each other. It's gonna kill one of us.....

Got my two units yesterday. we'll see if we can stretch it out further...

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LMAO yeah especially if we both live to be 100!!! So you got through another day of infusions and feeling good today then, huh?

ok well I better get on with my research here -trying to find a Lyme literate doc for the rest of my treatment :rolleyes: and so far I can't find one nearby :(.

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You would think that where you live there'd be a Lyme literate doctor. Heck, you folks invented it!

Yeah. transfusion did its trick. Let's see how long we can hold it this time....

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You and I have somethinh ekse besides Lightfoot music in common. My blood used to be so thick with hemo that they would test it before I'd give blood by taking a drop and putting it into some liquid. Most of the time, boom!, it would sink right to the bottom. My uncle died of some kind of rare blood disease in which he didn't have enough white cells, so for awhile I was concerned. It's okay for me now, though. "Glad" to see others have this anomaly...Sheryl:rolleyes:

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One would think :rolleyes:!!! Wish I could move to the town of "Hadlyme" ...yes there is a town in CT called that :p.

Today I picked up a copy of the test results from the old ortheo practice that student health services referred me to in 1999. The 2 infectious disease docs I have contacted want documentation before they agree to treat. I also did an online referral and got the names of 2 Lyme lit docs in Rhinebeck, NY.

A little surprise when I picked up the test results...I had TWO positive ELISA tests. The 1st one in 2000...I had no clue about at all :rolleyes:. The 2nd positive test was from 2003. Last test I had in 2006 was negative.

Glad you're feeling better for the time being...and I hope that's a long time being until you need another trans.

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Found a Lyme Disease clinic at a hospital in Providence. All secondary roads to get there from here but a pleasant drive @an hour. Rather not have to go out of state though since I'll have to pay more out of pocket out of network -but can make a case of it if I still can't find a place closer to here.

I'm going to have to jump through many hoops (and diagnostic tests) before I can even get an appt., so I'm back to my PCP for help with that tomorrow.

I didn't want to have any more tests done, but I can't seem to get around that! Mainly, they want an MRI of my brain and it's like...I don't even want to know. But I guess I should because I had some anomolies show up in a CT scan a few months back (frontal sinus and the end of the ethmoid) so I could get more info about those. My ENT referred me to a surgeon for those and I decided not to follow up.

And the cortisol test (saliva) I had already indicated that there's some loss of negative feedback control of cortisol to the brain so I'm a little curious to find out how this would appear on the MRI. ok so I just talked myself into getting this done :rolleyes:

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Nice work on talking yourself into it....

Yeah, when i was getting brain MRIs i was expecting to be like Yogi Berra - "They x-rayed my head and found nothing," but of course they found something...

Hemoglobin came in at 9.6 today. That's not at all where i want to be.

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Just got off the phone with a friend who's in nursing school and she was all over this... had me read off all my test results to her and she totally thinks the MRI is key. And she thinks the negative feedback cortisol thing is brain involvement that will show up on the MRI. She also said that I'd have to go on IV antibiotics because the Doxy can't penetrate the brain sheath :(! So I guess I'll be a dipsy-doodle for awhile longer.

Leaving my keys in the ignition the other day...windows wide open, wasn't cool and it bothers me to not be able to recall those moments that I'm doing these things.
Like, turning on the wrong burners on the stove and the heat up, instead of down and things like that I don't notice/realize I've done right away to correct them and no recollection of having done them in the 1st place.

So why is your hemoglobin so low, so soon after your last transfusion?

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It's low mostly because it was through the floor before the transfusion. I'm hoping the meds kick in and hold it and let it climb a bit but we will see.

sometimes they do a tarnsfusion when the hemoglobin is in teh mid 8s. This last time it was 7.1. Ugh.

IV antibiotics. Swell. IV anything is a pain.

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Even though you had been the highest ever in a long time...it had gone down that low so fast? That's just so much for you to have to go through all the time and I hope there's a better way, cure in the near future!!!

yeah and saw my family doc today and gave him copies of the +ELSIA's and he TOTALLY geared into action to help me. I've only been going there for less than 2 years and he didn't have these records. And not that I feel badly that he must not have believed me when I had told him I had 2 positive tests -because it's only good medicine that he couldn't rely on just my word on this.

MRI is scheduled for Friday..so I have to wait our the weekend for the results. But the staff where I'm going for this has let me look at images on their PC when I've asked to before so I may be able to get some clues before they're read.

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My brain is now available on CD :p. Opened it (the CD, that is) when I got back home and it looks perfectly normal -no 'white matter' issues as is found Lyme :biggrin: and otherwise everything looks healthy/normal!! Only thing I happened to notice is a little issue in my cervical spine lol...C3 the spinous process. And low and behold I just got a call this minute from my PCP's office to let me know the MRI is normal :):):) yipppppppeee!!!!!!

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oh, so you are not looking for a dissenting opinion?....

Good to hear! Mine has a little line through the right side. That was the 2002 episode with the blood clots and all.

Oh, while I'm
here, how the heck do you get the little emoticons in here anyway?

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Select "Go Advanced", located below the white text box. The emoticons will then appear to the right of the text box.

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noooooooooo LMAO!! Well I still have to have the Lyme specialist look at it but if there's anything at all...it's not severe (and nor are those kinds of symptoms I've been having) and I can't see having to go on an IV...phew!!! The worst damage has been to bone joints, cartilidge and spine.

WOW that 2002 was quite extreme...is that all resolved?

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Fezo, it's been a very long time since I visited Corfid, so I'm just now reading of your trials and tribulations. I'm so sorry you're going throught this, but I am very moved by your positive attitude. You will definitely be in my thoughts.

It was ironic to read of your CD, because I just listened to it last week! I got mine, years ago and I enjoy it as much now as I did then. Speaking of music, I still fondly remember meeting you and your wife at Tin Angel for a Rodney Crowell concert back in...was it spring, 2001-ish? That was a fun weekend for me. I came in Saturday for the Slaid Cleaves concert and was turned on to the music of Mary Gauthier as his opening act. Then Sunday brought meeting you and a few other Rodney fans, a great Rodney Crowell show and the introduction to the music of Mark Erelli (Rodney's opening act). (To you faithful readers, may I recommend all four of these singer/songwriters? They are great!).

You'll be pleased to know that another of your favorites, Fred Eaglesmith, started an annual pilgrimage to SoCal to haunt the stage of the concert series I work with, here in San Diego. He's been twice, now. It took me a little longer than it does most, but I've really started liking his music quite a bit.

As for some reading material to keep you distracted during those long transfusions, may I suggest the Pulizer Prize-winning Confederacy Of Dunces by John Kennedy Toole. It is one of the best written books I have ever read, but you need to have a certain sense of humor to appreciate it - I believe you do :). The book was published and the award was won long after the author died (His mom found it under his bed after his death). As for the eyes not cooperating when your Hb is low...have you thought of audio books?

I can't believe it's been so long - I miss our music discussions. Now that I'm back in the loop, you'll continue to be in my thoughts and prayers. Hopefully, the current medication will render positive results. Stay strong.

Janice

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omigosh it's Janice!!!!!!!!!!!!
miss you pretty lady..

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Janice! Long time no hear. Great to have you back!

Yeah, that Rodney at the Tin Angel was fantastic. He was promoting the Houston Kid at the time so that year sounds about right. Actually my wife was pregnant with Carrie at the time which makes it 2001. Rodney's daughter Carrie was at that show but that's not where we got the name. She looked exactly like a 13 year old Roseanne Cash.

I went up a few months back to see Rodney with an acoustic trio - Will Kimbrough and Jenny Scheinman along with the bass player du jour. Stunningly good. Will and Jenny are each very good on their own. Rather than an opening act Rodney gave them spots to do a song here and there in his set. Great stuff.

I read Confederacy of Dunces back when it came out - about 1980. I liked it a lot but knew a lot of folks who hated it. May have to try that again.

I've seen Mary Gauthier several times. Funny thing - the first time was a weekend up in Vermont. Fred Eaglesmith and a bunch of other folks doing a 3 day thing. The night before it starts I'm at an open mic in town and get chatting with this woman in the place and at one point I introduce myself and she introduces herself saying she's the opening act on Sunday! As it turned out we'd both signed up for this tour of the area on a patio boat in the Connecticut River. We ended up talking politics and all sorts of things for a couple of hours. Two years ago I got to introduce her at a picnic show up in Ontario.

Tuesday night I've got front and center seats for Bruce Hornsby. He puts on a fabulous live show. Highly recommended.

Hey, Pam -the 2002 incident.

That January I started getting hideous headaches. A sane person would have gone to the doctor but we're talking me.... I went maybe two weeks like this. Played a big gig in the middle of it. (BTW, while doing said gig all the endorphins kick in and no headache). Finally, 6 days after the gig, I come home from work and throw a warm wash cloth on there and it feels better so I go get my heating pad which would keep the heat going. The next thing I remember was waking up as if from a dream in the ER. I'd had a seizure.

As it turned out what happened (not diagnosed until 7 months later) is I have a mutated gene that causes an excess of a clotting factor. Something set that off, causing clots which led to ministrokes (yeah - that was the headache. I'd been working and playing and DRIVING with little strokes going on!). That's what caused the seizure.

I'm now on coumadin which counteracts that tendency to clot. Swell....

But I'm feeling better..... Well, sort of...