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Old 07-17-2009, 06:55 PM   #226
fezo
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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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Old 07-17-2009, 07:14 PM   #227
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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?
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
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Old 07-20-2009, 06:53 PM   #228
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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....
One would think !!! Wish I could move to the town of "Hadlyme" ...yes there is a town in CT called that .

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 . 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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Old 07-21-2009, 02:56 PM   #229
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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
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Old 07-21-2009, 05:22 PM   #230
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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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Old 07-21-2009, 06:43 PM   #231
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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.
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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Old 07-21-2009, 08:42 PM   #232
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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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Old 07-23-2009, 01:14 AM   #233
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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.
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.

Last edited by podunklander; 07-24-2009 at 10:01 PM.
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Old 07-24-2009, 05:38 PM   #234
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My brain is now available on CD . Opened it (the CD, that is) when I got back home and it looks perfectly normal -no 'white matter' issues as is found Lyme 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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Old 07-24-2009, 05:55 PM   #235
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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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Old 07-24-2009, 06:38 PM   #236
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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.

Last edited by RM; 07-24-2009 at 06:43 PM.
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Old 07-24-2009, 10:00 PM   #237
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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?
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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Old 07-25-2009, 07:44 AM   #238
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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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Old 07-25-2009, 12:52 PM   #239
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omigosh it's Janice!!!!!!!!!!!!
miss you pretty lady..
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Old 07-25-2009, 12:58 PM   #240
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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...
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Old 07-25-2009, 07:54 PM   #241
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OMG fezo! No wonder you were concerned when you got those headaches not too long ago . Scary stuff. But no strokes since?

I have to say, for myself I always feel incredibly grateful that I've had nothing life-threatening and have been able to recover or cured with treatment for some things anyway. Now 3 weeks on the new supplement/prescriptions and dietary regime and I'm noticing improvement with those symptoms . Wish my back would get better faster -now has been since the end of March and that was the most painful having it go 'out' ever, and go on for this long. In physical therapy we were trying to get the pain contained in the lower back and not having it shoot down into my legs. Most days I can also feel the pain in one or both legs and can hardly walk...but if just in my back..I can walk.

It was a major effort for me to get out to go to the open mic last week (not to perform) and I had not gone in 5 months!! Was in pain the entire time but being around everyone made me feel better! lol they even announced a "Pam" sighting. Lots of hugs and it was really good to see everyone and lots of invites to BBQ's and nights out so I hope I'll be up to doing all these things. Even considered making a go at performing again maybe next month

I think if my back was better I'd be able to say that I'm feeling great! So I hearya on the sorta feeling better thing is relatively speaking.
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Old 07-25-2009, 10:28 PM   #242
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Nothing since then. The only down side is being on coumadin if there's ever another stroke it won't be mini.

Back spasms are the worst. Been there.

Would have liked to have gotten out to play but I've been mighty tired this week. Besides it's daughter #2's 17th birthday. I haven't seen her since 2 this afternoon - her friends kidnapped her for a surprise party that we knew about but she didn't - but I figured on the off chance I'd hang here and play a little, torture myself by watching the Mets and such...

Last edited by fezo; 07-25-2009 at 10:35 PM.
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Old 07-25-2009, 10:48 PM   #243
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Being as discreet as possible.... I still have CDs. $15. Drop me a line - fezo@rocketmail.com

Thanks, folks.
Thinking of great gift ideas.... here's another one!!!

(I hope I'm being tactfully discreet...
I hope you don't mind the plug fezo, and I hope you're feeling better soon.)
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Old 07-26-2009, 12:37 PM   #244
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Oh, I'll always take a plug.....
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Old 07-26-2009, 02:16 PM   #245
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Nothing since then. The only down side is being on coumadin if there's ever another stroke it won't be mini.

Back spasms are the worst. Been there.

Would have liked to have gotten out to play but I've been mighty tired this week. Besides it's daughter #2's 17th birthday. I haven't seen her since 2 this afternoon - her friends kidnapped her for a surprise party that we knew about but she didn't - but I figured on the off chance I'd hang here and play a little, torture myself by watching the Mets and such...
Scary stuff and that's heavy duty medication. And stop torturing yourself there, watching the Mets hehe

And congrats @your daughter's 17th birthday wooHOOOO !!! Nice of her friends to throw a surprise party !!!

I am into the longest stretch ever of not seeing my son . Last weekend I saw him and he leaves next week for month-long training out of state!

yeah I threw my back out 3 times last year and was burdened by pain and mobility issues for a month each time. This thing was different and seems more disc related and I should have had and Xray and not put off going to physical therapy. Anyway -it's been since the end of March and by this time of year I've already been hiking up the mountain a few times...but haven't been able to once!! Stopped going to p/t but have been really good at keeping up with the exercises at home. My p/t assured me that it will get better and just to keep up with the exercises
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Old 07-27-2009, 01:38 PM   #246
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Hey! Those Mets have won two in a row. If they can keep this up they could get as good as, say, mediocre.

Coumadin is kind of heavy duty but if one keeps monitoring it does the job well. I've had to up the does because the medication I'm on to keep the toxoplasmosis from acting up in the eye inhibits the effectiveness of coumadin. I'm a darn walking pharmacy.

In for more blood Wednesday. Hemoglobin at 8.4 which isn't awful but I feel beat enough that the doctor is sending me in.

To add to the fun daughter #2 got her driver's license today. Roll up the sidewalks!
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Old 07-27-2009, 01:56 PM   #247
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In order to maintain my legendary status as a thread derailer........

fezo, how do you feel about the health care reforms that are being hashed out in Congress ? I understand that nothing is finalized, but I was wondering if you think any of the proposals would benefit or hinder your treatment.
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Old 07-28-2009, 01:07 AM   #248
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Hey! Those Mets have won two in a row. If they can keep this up they could get as good as, say, mediocre.

Coumadin is kind of heavy duty but if one keeps monitoring it does the job well. I've had to up the does because the medication I'm on to keep the toxoplasmosis from acting up in the eye inhibits the effectiveness of coumadin. I'm a darn walking pharmacy.

In for more blood Wednesday. Hemoglobin at 8.4 which isn't awful but I feel beat enough that the doctor is sending me in.

To add to the fun daughter #2 got her driver's license today. Roll up the sidewalks!
Best wishes for your transfusion on Wed and am sure you're looking forward to feeling better after that. Let's shoot for like 12.5 !!!

yeah you must be on a lot of prescription medicine . I'm not on all that many (4 right now) but more OTC supplements (just added a new one today)-which I hope to not be on all these for too much longer. But just learned a helpful hint...turning the bottles upside down after so I know I've taken them.

WOW hehe well did you teach her how to drive? If so...do we need to move our mailboxes back too?
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Old 07-28-2009, 10:09 AM   #249
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I'm on about a dozen medications. I'm the sort who on my own doesn't like to take anything. Sigh.

Michelle had driver ed and then my wife did all the practice driving with her. the only thing she gets from me is the constant reminder to "assume everyone else on the road is an idiot." mostly this means don't take for granted that the other driver will do the right thing.

On health care reforms the devil is in the details. I'm certainly in favor of getting everyone covered and believe that will be cheaper (or more realistically the rate of inflation on it might be lower) that way instead of flooding ERs with the uninsured.

The thing you have to watch out for is anything that dictates what existing insurance can cover or their protocols for how they cover. If they want to expand coverage fine. My concern is contracting existing coverage.
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Old 07-28-2009, 11:04 AM   #250
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Have a great time at the Bruce Hornsby concert tonight, Fezo.

I went to see Marshall Tucker last Saturday night. I actually went and got some autographs. That was the first time in my life I did that. Some brave girl dragged me over to them. Tomorrow night they will be at Joey Harrisons's Surf Club in Ortley Beach, New Jersey.
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