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starting to panic !

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mike:

--- Quote from: newt on June 19, 2006, 07:25:48 AM ---

Your doc should certainly screen for diabetes. Kaletra often affects lipid and sugar metabolism, and this can lead to diabetes which contributes to poor kidney function.
- matt

--- End quote ---

thanks matt but i have been diabetic since i was 10 years old, almost 30 years and counting, on 4 injections a day. i think my kidneys would be damaged to some degree without the added HiV problem.
i can deal with erratic cd4 counts but not a cd4% fall from 11.8 % to 4.9 % especially when i had 8 % and a cell count of 49 when diagnosed before starting treatment.
as in most cases, the renal specialist doesn't interact with the HiV specialist, he doesn't even have access to my HiV hospital records as they are strictly confidential despite the fact i have no problem disclosing the info. this means any info they get is via myself and that is kind of frustrating. this is the first year they have even bothered to check out my kidneys on the diabetic side of things !
i am in the UK.

Matty the Damned:

--- Quote from: mike on June 19, 2006, 07:57:13 AM ---thanks matt but i have been diabetic since i was 10 years old, almost 30 years and counting, on 4 injections a day. i think my kidneys would be damaged to some degree without the added HiV problem.
i can deal with erratic cd4 counts but not a cd4% fall from 11.8 % to 4.9 % especially when i had 8 % and a cell count of 49 when diagnosed before starting treatment.
as in most cases, the renal specialist doesn't interact with the HiV specialist, he doesn't even have access to my HiV hospital records as they are strictly confidential despite the fact i have no problem disclosing the info. this means any info they get is via myself and that is kind of frustrating. this is the first year they have even bothered to check out my kidneys on the diabetic side of things !
i am in the UK.

--- End quote ---

Mike,

I'm in Australia and here HIV records are guarded with a similar ferocity. I have severe epilepsy (unrelated to HIV) and am under the management of a neurologist. When I was diagnosed with HIV, I gave written permission for my HIV specialist, GP and neurologist to share whatever information they needed to with each other. Given the potential for anti-HIV drugs to interact with my epilepsy medicines this has proven to be quite important.

Is it possible for you to make similar arrangements in the UK? Given the seriousness of your health problems, I would think that your various doctors working together is imperative for your well-being.

Fondly,

MtD

newt:
Methinks a bit of bum-kicking of doctors is on order..

At my UK clinic glucose and kidney function tests are routine for all people on treatment.

The dose adjustments for Viread by creatine clearance are in the prescribing information insert in the box.

Really, some kind of discussion you'd think between the two docs would be in order under the circumstances.

You might ask your doc about the merits (or not) of IL-2 to boost your CD4 count. An IL-2 report: IL-2 effectively increases CD4 count in people with low CD4 nadir and another one: PREDICTORS OF CURRENT CD4+ T-CELL RESPONSE AMONG PATIENTS RECEIVING SUBCUTANEOUS RECOMBINANT INTERLEUKIN-2 (RIL-2) IN ESPRIT (EVALUATION OF SUBCUTANEOUS PROLEUKIN® IN A RANDOMIZED INTERNATIONAL TRIAL)

Bum-kick....


- matt

aztecan:
As Matt said, time to kick your collection of docs in their collective butts. Even those without your history of diabetes should be monitored regularly for blood glucose levels because many of the meds can cause renal problems.

The problem of getting doctors to share information seems to be common. Sometimes it is like pulling teeth to get one doc to talk to another, even with written releases in place.

The problems you are having are a perfect example of why this is just plain stupid. I hope you can arrange for your various physicians to communicate with each other, as Matty suggested. That sounds like something that needs to happen.

Hang in there.

HUGS,

Mark

mike:
thanks for all the support guys, i appreciate that
- my HiV doc has been talking about switching me from kaletra to nevaripine for 4 months now because of the side effects but hasn't got round to it yet.
- doctors not communicating is very frustrating, where i live, the regional hospital has a system where the HiV department has a totally separate admin function and even uses a separate computer database meaning neither of the doctors can even access my lab results from the other side.

i understand the confidentiality but it is maddening when you don't want it yourself and have to write everything down as the doc speaks to you to pass to the other one.

i've only been diagnosed HiV positive for 7 months so have been slightly in awe of what the doctors tell me and passive in my response to them but i think you are right, the time has come to kick some butt and demand some changes before my kidneys and immune system pack up together and go on permanent vacation.

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