POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: mitch777 on October 08, 2013, 09:37:43 pm
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ok, broke out in tears again. I got a call this morning from my ID doc of 18 years. missed his call by going to the mailbox. he said he wanted to chat.
warning will robinson! warning!
I thought it was going to be about my needing to let blood due to my testosterone therapy bring my red blood cell count too high. nope. he called back at 8 pm tonight.
He went to some kind of hiv conference in San Francisco to here a speaker talk about neurocognitive issues. He told me he waited to talk to the speaker about me.
wow.
my doc is in his mid-late 60's and has been the most compassionate doctor I have ever met.
he mentioned something about a spinal tap. not sure yet what he expects to find or more importantly what he would do with the information. guess I will find out in less than 2 weeks when we go over it all. scary but reassuring at the same time.
this spring/summer has been hell. mom, dog, teeth, new antidepressant med, disability, red blood count, cholesterol, and simply just whipped out. it's really difficult to know what is causing what even though I try my best to give space between everything.
I wish I was presented with one issue at a time. not happening.
not happening in the past 3 years. aging with hiv after 31 years has become a challenge that I hope newly diagnosed folks will have it easier.
I asked him if he could give me my med history from the beginning of this adventure. my record keeping has been sad. who would have guessed that I would still be around today? not me.
I've been pretty lucky over the years. luckier than most. the last few years have come as a surprise to me. I need a break. a break from doctors and further deterioration of my body. not sure if it's in the cards. each passing month/year seems to bring another health issue. (or three)
sorry rambling on.
no matter what the future brings I am grateful that this site exists.
thanks for listening.
m.
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We are lucky you joined us here . I can relate to treatment burnout as I call it , I have felt the same way many times but I keep plugging along because many times just when I think I have had enough and want to give up is when the breakthrough comes .
Your lucky to have a doctor that doesn't leave your case at the office when he goes home , we should all be so lucky .
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Thanks Jeff. Ya, treatment fatigue is a good description. I don't have any intention of giving up, it just gets so tiring at times.
Geez I should stay away from posting when I am emotional and tired. My thoughts came out like a mixed bag of mumbo-jumbo.
I teared up when talking to the doc because he made me feel that I mattered. They were good tears. I do feel very lucky to have him as my doc.
He talked a bit about neurocognitive issues as related to persistant inflammation in the brain from the virus. He didn't get into details other than to mention a spinal tap. Would anyone venture a guess as to what he would be looking for?
I can't recall him ever mentioning inflammation before other than in passing. I'm thinking he may have learned a few things in SF and thought they applied to me.
Maybe he has a secret weapon that will turn my brain around. 8)
Being on Viibryd has helped my headaches more than anything and has smoothed off the edges from my depression but has come at the cost of a fuzzy brain. It just adds to the complications of my neurocognitive issues. If Viibryd wasn't helping the way it has I would dump it but having less pain trumps the fog.
I'm really not sure why he called seeing that I have an appointment soon. Not that I minded at all, just a bit odd.
Anyway, sorry for barfing up a bunch goop last night. ::)
Just another day of Mitch lost in space.
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Spinal tap...pudendal nerve block shot...AVOID at all costs!!! Well, avoid the nerve block shot...believe me you don't want to know. The spinal tap...eh, what can go wrong... :o
Fatigue with everything is an issue. Had gotten so bad because I couldn't remember everything that I was dealing with. There was always something new arriving in the mail reminding of an unsettled issue from a year ago...just now getting attention. Luckily two letter arrived recently that settled some matters. Took about two weeks for it to actually sink in that I wouldn't have to pay the $60,000 hospital bill from when they almost killed me which was why I had the bill in the first place.
Perhaps you should start charting your history on the bedroom wall across from your bed. That way at night and in the morning you can observe your progress through the years. Or maybe just put a nice picture of naked men there instead.
Yes, it matters to feel that you mean something to someone. That's why I like my doctor. Same thing, he knows me, he talks to me not at me. Makes a big difference in how much you trust someone who's in charge of your health. Take him some donuts with chocolate glaze the next time you go in. Show him "the Love."
All right, slightly silly with that last suggestion but I have to joke otherwise I'd probably spend too much time crying. Keep us up to date with what's going on. Hope it turns out to be something good for you.
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Mitch,
Spinal Taps would never be the first choice but over the years I have had five , they do not last long and a practitioner who has some skill and confidence will get it done and dusted for you then you can treat yourself to your brave man treat. Plus you get a new badge for the LTS shirt.
What is it for ? ---I tend to shy away from the med stuff unless its about me. However the fluid in the spinal column provides very accurate diagnostic evidence for a variety off ailments , so they are done to diagnose and to monitor how well certain treatments are progressing.
So in my case with 2 lots off chemo , that was anything BUT straightforward I had 4 off the S.T,s by number 3 I was quite blase . Oh just get on with it dear. kind off thing. Allways pleased when it was over though.
You have a similar , it reads relationship with your ID doc as I do , so be honest with Him/her have a breakdownette with then say if it does its all too much ifeellikeiamlosingcontrol, snot should be running now , mostly well 99.9% off the time I keep it together , but At the moment Ijustfeelthatihavetoo.....snot should be in free flow if you are doing this right by now.
That way your Doc , who you respect, fully knows the score and can start addressing it.
Why did he ring late at night---he is a good Doc who was fired up by the what he had heard and wanted to get on and put it into practice , great wish all Doc ,s where like that.
Now back to the important stuff that back yard in London .........................
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Mitchy-Poo,
You know my secret about looking into eyes and seeing souls. And when I looked into your eye I saw one of the most beautiful beings walking this planet. Hold in there. All will be well.
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@LTS- Now you are scaring me! lol.
Geez, what a relief to know you weren't on the hook for a monster bill from the hospital!!
Much prefer the naked men idea. :)
I really love my doc and he has been with me for about 18 years. I know that I am lucky to have him. I often spend an hour with him at my appointments and he never (well rarely) seems to be in a rush.
I will let you know what this is all about when I find out. Thanks for the support. :)
@ Theyer- You are too funny!
Man treat, new badge, breakdownette. :)
Not so sure if I would be able to keep the snot running after reading your post. More likely to break down with laughter and I hold you responsible.
Thanks for making me laugh today.
The back yard in London is on my to do list. I will need some pictures to start planning. :)
Thanks again guys!
m.
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Mitchy-Poo,
You know my secret about looking into eyes and seeing souls. And when I looked into your eye I saw one of the most beautiful beings walking this planet. Hold in there. All will be well.
oops, posted too quick and missed this.
How sweet you are! I will be ok. Just had a "breakdownette" and needed to tell people that understand.
Thanks for the bear hug. :)
m.
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We're talking about HAND again - right?
I was poking around on the internet but couldn't figure out what they want to measure with the lumbar puncture. Is it the amount of HIV in your spinal fluid or the amount of medication?
I think we need Okskoko
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I was poking around on the internet but couldn't figure out what they want to measure with the lumbar puncture. Is it the amount of HIV in your spinal fluid or the amount of medication?
It could be be a whole lot off things, that they will wish to gain more clarity on
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Well, as it turns out my doc didn't go to SF to a conference but he spoke with a doc from SF.
Anyway, today's appointment was long (1 hour 15 minutes). There was a lot of ground to cover. I had my notes and questions but it still was a blur. Guess that comes with the territory of having cognitive problems. I asked him to repeat what he said so many times. :(
So... the reason for the lumbar puncture was to find out my VL in my spinal fluid and also a Beta 2 microglobulin test. I remember him mentioning inflammation in the brain.
Spacey me forgot to ask the most important question: So what are you going to do about the results?
My red blood count has gone higher out of the norm. (5.eight) edited to add that that emoticon with the sunglasses keeps popping up when I type this with numerals (due to Androgel)
My hematocrit level is higher than ever at 54.5% (due to Androgel?)
my creatinine level has been on a steady uphill climb to 1.2 (due to Truvada)
He is considering replacing Truvada with Epzicom.
All of this info just overwhelmed me.
Any help here?
I am especially interested in knowing more about the lumbar puncture tests. What will they show and what can be done about it.
Got my flu shot, more blood drawn, and a chest X-ray. A very long day. I'm bushed.
m.
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I am not for one moment undermining what problems your having , Mitch but I do know that when I am very concerned about something like a Doc,s visit I always but always leave thinking you forgot this that the other and on and on.
Anxiety breeds anxiety.
I also wonder that the Doc being the good scientist has a open mind as to the results off the LP , so its not surprising that you leave without your precise points addressed;and even if you did I suspect you would still feel anxious coz its not an everyday thing a LP, So I flounder here but I guess I am saying your current situation waiting for ? to be answered is anxiety creating and anxiety does not help in the remembering --catch 22 ---vicious circle stuff.
So enjoy the garden , potter, have a walk with me in London ,see off forum.
Wishing you the best.
m
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I am not for one moment undermining what problems your having , Mitch but I do know that when I am very concerned about something like a Doc,s visit I always but always leave thinking you forgot this that the other and on and on.
Anxiety breeds anxiety.
I also wonder that the Doc being the good scientist has a open mind as to the results off the LP , so its not surprising that you leave without your precise points addressed;and even if you did I suspect you would still feel anxious coz its not an everyday thing a LP, So I flounder here but I guess I am saying your current situation waiting for ? to be answered is anxiety creating and anxiety does not help in the remembering --catch 22 ---vicious circle stuff.
So enjoy the garden , potter, have a walk with me in London ,see off forum.
Wishing you the best.
m
Thanks Michael.
Ya, I guess anxiety can mess me up at times. I went in pretty well prepared with my notes but I can get so distracted lately. There was so much ground to cover and the conversation kind of bounced around. Then when he brings up something unexpected or talks in doctor code I just get lost. My cognitive issues don't help either. lol.
A visit to see you in London would be good therapy anytime. :)
m.
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Well, as it turns out my doc didn't go to SF to a conference but he spoke with a doc from SF.
Anyway, today's appointment was long (1 hour 15 minutes). There was a lot of ground to cover. I had my notes and questions but it still was a blur. Guess that comes with the territory of having cognitive problems. I asked him to repeat what he said so many times. :(
So... the reason for the lumbar puncture was to find out my VL in my spinal fluid and also a Beta 2 microglobulin test. I remember him mentioning inflammation in the brain.
Spacey me forgot to ask the most important question: So what are you going to do about the results?
My red blood count has gone higher out of the norm. (5.eight) edited to add that that emoticon with the sunglasses keeps popping up when I type this with numerals (due to Androgel)
My hematocrit level is higher than ever at 54.5% (due to Androgel?)
my creatinine level has been on a steady uphill climb to 1.2 (due to Truvada)
He is considering replacing Truvada with Epzicom.
All of this info just overwhelmed me.
Any help here?
I am especially interested in knowing more about the lumbar puncture tests. What will they show and what can be done about it.
Got my flu shot, more blood drawn, and a chest X-ray. A very long day. I'm bushed.
m.
As we know being UD in the blood does not necessarily mean for patients UD in other body compartments, ie virus still replicating in the semen and CSF (spine and brain), so in some unlucky patients, the HIV bug is still replicating in these areas causing havoc.
Epzicom has better brain penetration than Truvada and potentially better for your kidneys and bones too!
You are very fortunate to have a great medical professional managing your care.
Frisky
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As we know being UD in the blood does not necessarily mean for patients UD in other body compartments, ie virus still replicating in the semen and CSF (spine and brain), so in some unlucky patients, the HIV bug is still replicating in these areas causing havoc.
Epzicom has better brain penetration than Truvada and potentially better for your kidneys and bones too!
You are very fortunate to have a great medical professional managing your care.
Frisky
Frisky, I understand that you meant well, but as someone who was only diagnosed in 2010, you are not permitted to post in the LTS forum. It's meant ONLY for people who were diagnosed before 1996. Please don't post here again, thanks! :)
Ann
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Frisky,
Thanks for the post anyway. (I think I posted in the women's forum once. lol)
Still have yet to be scheduled for the lumbar puncture. I guess if he finds a high VL he will be switching me to Epzicom.
m.
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Mitchy, there are several reasons for having a spinal tap. We could only hazard a guess. For instance, you complain of frequent headaches. Excessive pressure in the CFS can cause it. They can test the pressure using this procedure. I had dozens of them over a short period to relieve the pressure when I had meningitis a few years ago.
I was absolutely terrified on the first one, but it turned out to be an entirely painless procedure. There are several things they can only test for using the CSF. He might be just ruling things out instead of necessarily suspecting something.
Take care buddy.
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Mitchy, there are several reasons for having a spinal tap. We could only hazard a guess. For instance, you complain of frequent headaches. Excessive pressure in the CFS can cause it. They can test the pressure using this procedure. I had dozens of them over a short period to relieve the pressure when I had meningitis a few years ago.
I was absolutely terrified on the first one, but it turned out to be an entirely painless procedure. There are several things they can only test for using the CSF. He might be just ruling things out instead of necessarily suspecting something.
Take care buddy.
Thanks Greg,
After hearing from others here and in pm's I'm not so concerned about the pain of the LP.
I trust my doc with my life and he knows me well enough after all these years. Doctor visits can get my mind spinning with questions. It sometimes takes me awhile to settle down. That's where the support here comes in. :)
I haven't heard from others here having this testing being done for the same reasons. maybe I missed it.
Thought it might be helpful for someone down the road. Who knows? :-\
m.
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Hi Mitch ,I have just checked and this thread has had 980 views, so my money is on its given people an insight into LTS lives, and its another piece off documentation for people who have taken sex risks and want to stop inclding Risk in there sexual life.
I too often hesitate about posting ,self conscious off being a moaning Mini , what gives me the push is the small amount off members comparred to the guest figure.And the very positive support I get from all here , with so much cut out off prevention work , these forums as well as providing us with support do prevention work .
I hope.
care as always
m
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Very sweet Michael. :)