POZ Community Forums
Main Forums => Living With HIV => Topic started by: lcs0901 on August 07, 2008, 11:31:57 am
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Hey, Everybody - I'm feeling this as a problem and I'm hoping for some advice. I've been poz for six years. Was on treatment for the first year and a half, then, due to loss of insurance, had to give up meds. Things turned out OK 'cuz my numbers were really good, and I felt great. I changed jobs two years ago (to one that included insurance as a benny). Almost a year ago, started getting headaches and muscle pain daily. I went to a GP in my network for referral to an HIV specialist. I landed one w/ a great reputation, found out my numbers were moving into the "gotta restart meds" range, and restarted six months ago. Now, my numbers are good again (VL=undet., CD4+=560's), but the symptoms haven't even lessened. The HIV doc did the standard "fatigue" and "headache" workup, but nothing showed up, except mild anemia. So, he didn't add/change anything; just told me that "It'll clear up - give it a little more time." Well, I received a promotion at work (and it's actually a pretty prestigious upper-level position, but the physical/mental/emotional demands increased somewhat exponentially). HIV-doc said, since he couldn't find anything, he's sending me to a Endocrinologist for a new workup. Here's the fly in the ointment - HIV-doc has never put a hand on me during any visit, except to shake my hand. No listening to my chest/heart, no feeling for lymph nodes, no feeling for liver/speen enlargement, no ... Well, you get the picture. Oh, yeah - and my visits w/ him have never been longer than 10 minutes. My GP tells me he's one of the best in the metro area & I'm lucky to have him. GP also says he's not familiar enough w/ HIV treatment to work w/ me on that. Is this how HIV treatment really works now, at least since I was first diagnosed, and I'm just too needy? Are the two docs I'm working with practicing within an acceptable standard of care? I know my current symptoms are symptoms of HIV, but, no matter that I've brought them up at each visit, no suggestions or new meds are offered by either doc. I'm feeling like a whiner right now, but, with the new job, I need to be on top of my game. I just don't think I have the stamina to continue with the way things are, though I'm still trying as hard as I know how to keep my game-face in place.
So, the question (if y'all made it this far, God luv ya) is - do I look for yet another set of docs and start over again, or do I suck it up and accept that this is how things are (with the docs, my symptoms, et al.), 'cuz this is how it is and do my best to get on with things? And HIT ME HARD W/ THE ANSWERS!! After lurking for the past week, I admire and appreciate that from this forum! I'm a health care provider and, while I treat my patients w/ respect, I don't sugar-coat the truth. I ask for the same in return. I'm truly looking forward to reading the responses, 'cuz you guys deal w/ this sort of thing every day and I respect all y'all's feedback!
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HIV-doc said, since he couldn't find anything, he's sending me to a Endocrinologist for a new workup.
Endocrinologist for a new workup and _____??? (any other clues or is that all he said?) Did he mention anything about hematology?
HIV-doc has never put a hand on me during any visit, except to shake my hand. No listening to my chest/heart, no feeling for lymph nodes, no feeling for liver/speen enlargement, no ... Well, you get the picture. Oh, yeah - and my visits w/ him have never been longer than 10 minutes.
Speaking only for myself I don't like the sounds of this.
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change you doctor; take all your medical personally to a doctor you like.
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HIV-doc has never put a hand on me during any visit, except to shake my hand. No listening to my chest/heart, no feeling for lymph nodes, no feeling for liver/speen enlargement, no ... Well, you get the picture. Oh, yeah - and my visits w/ him have never been longer than 10 minutes. My GP tells me he's one of the best in the metro area
I think we have or I should say had the same doc. Had a great experience with my first and then got one just like yours. After 2 visits I changed and am much happier.
Woods
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There are a number of red-flags that I'm seeing. Your doctor should be "touching" you, if he's suggesting an Endocrinologist, he should be telling you why (muscle pain and headaches don't make me think first of an endocrine issue -- but I'm no medical doctor) and if all your visits with him have been 10 mins or less (even the first one???), I'd say it is time to move on.
Now -- I'll also say -- you should be questioning your doctor(s) if they aren't giving you what you need. Like, Hey doc, why aren't you listening to my heart/lungs or checking my lymph nodes -- or Hey doc, why are you suggesting that I see an Endocrinologist for these symptoms?
You also seemed concerned that he isn't changing your meds, but you said the headaches/muscle pain started BEFORE you restarted meds, so why would you want your meds changed? Also -- while headaches and muscle pains that won't go away should be checked out, do you think they could be related to your job? Stress can definitely cause these symptoms? Are you doing anything to lessen stress, like exercise?
Bottomline -- you sound like you don't trust this doc, which is a good indication that it is time to move on. However, when (if) you get a new one -- make sure to ask him/her questions when you are not understanding why something is or is not being done. You really do need to be your own best advocate.
Hugs,
Mike
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I've been through 4 HIV specialists over a span of 15 years. There are some minor things that are standard each visit more or less: taking your pulse, temperature, quick look up your nostrils and down your throat, weight taken, quick listen to heart rate. These things are done quickly while you discuss your lab numbers, etc. It can feel rushed if you're not used to the routine.
I've only had one doctor routinely check my lymph nodes, but he did it for the 8 years I saw him and it was when my numbers were much lower. But you also are doing the separate GP and HIV doctor routine, which I've never done -- my GP has always been an HIV specialist/infectious disease, so I don't know who should do what in your situation.
Otherwise I'm not clear, other than the non-touching issues, what the problem is. You mention "headaches and muscle pain" but then really seem to be discussing fatigue/stamina issues later. If you doctor(s) have ruled out the normal low testosterone etc. issues, why haven't they had you screened for depression? Also, how severe are the headaches -- you mean that simple aspirin is no help? I've had friends who have had "cluster headaches" and it ended up to be a non-HIV issue and they were diagnosed bi-polar. Not every issue is directly related to HIV infection, but it can complicate finding what's what, that's for sure -- and why I always hate this 2 doctor format that some folks are forced into.
Additionally I can't emphasize enough that the patient often must be assertive and insistent with their problematic symptoms. You may feel you have done so, but are you sure? This is all part of learning to be a good patient, and at the 6 year mark of treatment I'd assume you know this, but if you don't know if you're receiving proper medical care after 6 years I just kind of wonder what's up. Did you also go without any doctors visits during this med hiatus for years?
Also, as an aside, I just wanted to make sure you know that if you fall through the cracks with the "no insurance" issue you should apply for Ryan White/ADAP coverage for your meds. Was this done and if not why?
Good luck. It's certainly not ideal to begin a new stressful job/promotion and have medical issues at the same time. I've been in that same situation.
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Hi,
There hasn't been a time, when my doctor doesn't touch me. At each visit, Temperature is taken , blood pressure is taken, pulse is checked. He listens to my heart,, listens to my lungs ( breathing) , checks my reflexes. Looks in my ears and looks down my throat. At every visit, he will probe around the armpits, and check around the gut area. I am never in the office for more than 15 minutes sometimes less, sometimes more. Depends on what I need to discuss with him. Hope things work out for you. But, as already mentioned, I think you need to question your doctor some.
Ray
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It looks to me that this is the first GP and first ID specialist that you've seen. It can't hurt to see if you like others better. Your local AIDS service organization may have a list of recommended doctors.
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WOW - You guys are really GOOD!! First, let me correct my erratic time-line: When I was first diagnosed, I was in the middle of seroconversion. I had the high fever, enlarged nodes, sweats, muscle pain, fatigue, and headaches. Although I hadn't been sleepin' around, I had a good idea what it was, so I got tested. The day the results came back, I was able to get in w/ a really good Family Practice doc who was also an HIV specialist (great combo, eh?). That's when I started meds and kept 'em up for 1-1/2 yrs. Then the insurance ran out, but it was OK. I kept in touch w/ my doc and things stayed pretty even. Then about a year ago, that's when the original symptoms, minus the fever, came back. By then, my previous doc had "minimized" his practice and wasn't taking any new patients (or restarting any old ones). But I had the new job w/ the good insurance by then. My current GP is a referral through insurance; the HIV guy is a referral through the GP. HIV guy started meds (Kaletra monotherapy twice/day) on our first visit in Feb, '08. Now, even though my VL and CD4+ are good, the symptoms persist. After the workup for the fatigue, headaches, muscle pain by the HIV-guy ('cuz GP guy "don't know HIV"), he's the one making the Endocrine referral. That's why I asked - Do all HIV docs just chat for 5-10 minutes then you're on your own 'cuz the symptoms are from HIV only - so get used to it? It wasn't 'til I pushed him to actually do something that he made the Endocrine referral.
So, yes, the symptoms were there before the meds and they continue with the meds - no difference.
But you guys are right - I've asked questions while he's in the room, but I haven't pushed him to stay and answer more. So I guess it's time to look at another GP and HIV combo. Sounds like y'all are getting good care - I'll start looking again. Thanks, and all the best to all y'all !!