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StarZ
April 9th, 2010, 08:11 AM
Was supposed to see a pretty high ranking guy. But he was out, or not. Coward. So they changed the guy at the last minute. All I wanted to know is if he is a guy after the last two lilly livered females.

Had a meeting with the new guy, Dr No 4or is it 5 this week. It seems at the moment the biggest question is am I mad. Its all can I ask you some personal questions so I can understand who you are? Lol he has a file over 2 years I think he knows who I am, short of showing him the Duesberg tattoo on my belly. Do you have a boy friend? Who have you disclosed to? Do you work, what work? Do you have close friends? Plenty. Do they know your status? Yes! Wish he knew I had had a really great luch with dissident friends only days before, feeling loved and accepted lol. Are you happy? I am Buddhist. He didnt blink- clearly a man of limited appreciation of other deities but himself. I am profoundly happy- I told him because its true. Needless to say that I said through gritted teeth. But the cyst- dont people stare? (Of all my issues being staterd at has never bothered me- quite frankly I think people would as I make no effort to hide it and never have. I mean it is quite spectacular and if eyes arent for looking, people have looks of wonder rather than pity so I guess it doesnt really compute in my head, as he thought, as a source of daily terror) People I dont know I dont care about and people who are close to me know it doesnt hurt so they know Im fine- I told him. He said I should be on drugs as these cysts are unlikely but occur in HIV poz people. I said that I didnt want to take ARVs and he should just get used to it. I told him as far as I was concerned it was a vaccine injury due to getting on the band wagon of family egg issues rather late in life, just as I nolonger do mlk. He asked my to describe the lactose issue- he concurred it is indeed a lactose issue (for some reason he really clung to the fact that it gives me constipation). What I wanted to say is that he should like it re ARVs, its not his place! I told him about all the trouble I had had motivating my past Drs to send me for a scan, due process and all that. I told him about the spiteful letter to the specialist when I eventually got a referal. He reminded me not to slag off his work mates coz they all like each other. LOL had to bite my tongue very hard to keep from saying that I knew their love transcends patient care and patient safety. Club of Mayhem. So he did his little bit about if I had cancer would I take the chemo- hell no. He looked aghast. If I have a headache?- I may take an asprin I said. Why? Because there are always things that need doing...His conclusion is that the immediacy of the inconvenience is the reason I would take asprin and not ARVs. He said what of high blood pressure so I told him the Null hypothesis of diet and excersise and how it seems genetic because we inherit genes and recipes, cant change the genes change the recipe. I warned him not to psychoanalyse me. Its patronisisng and told him that his past colleage had got himself in trouble with me over that before. He said he needs to know so he can help me. I said have you seen the list of side effects on the drugs? Does he know the highest cause of death amoung HIV poz women in the states is liver and kidney failure. Needless to say he did not. He askem me to supply a journal article, not too many he added (does he know its out there and plentyful? twat). So I think its a bit of a leap to insist I am crazy to not want the drugs. He suggested a support group for other women with HIV? I told him I do not react to a crisis with a need for a group hug. He did admit there are others who wont take ARVs and I said I would love to meet them, I felt persecuted for my decision at his illustrious clinic. A test no doubt to what it is I object to about meeting others. Am I in denial? I told him was planningto disclose when I was ill enough, no need to distress my parent and family. So what do they say about....(the cysts he meant) I said I am fine,nothing is wrong with me- AIDS zone molehill in to mountain tactics. He said I need to see the impact of HIV on people at an inpatient centre. I said had he considered how much of their condition could be attributed to the impact of the drugs and if he could respectfully not try to persuade me to take ARVs so we could possibly remain friends. I am an adult and the decision is made- all he has to do is get used to it. Of course he could not resist- you should see I have just returned from malawi he said, the people there - all breathless now- things are really bad. I told him again that I was aware how lucky I was to live in the civilized west. I said I dont need to hear it because I know a lot about Malawi (what I wanted to say was Madonna and her one-parent-alive AIDS orphan taught us plenty about HIV-not in Malawi- I surprised myself by not spitting that at him because the anger was welling up nicely now). I had to exhale- those breathing excersises help alot. So it came time to check the stats. At least he had the decency to acknowledge that 470 for CD4 was awful high for a woman in her second year from a full blown AIDS diagnosis (CD4 was 306 last Nov and 290 in Sept). wow he said- he has a very expressive face and a bit of a speech impediment- did you have a flu at sampling? No I said, I only left the blood two days ago. He examined the date on the computer then he looked at me for signs of fever lol I pushed my chair right up to his for the rest of the interview he was a very intimate 3feet away. After all that you are crazy- why arent you sad-the HIV will kill you AIDS zone stuff! My liver is good- I told him of my past liver issues and how I had been subjected to excess testing over it. Kidneys doing good. All good all over. Mmmm The man had convinced himself I was mad only to discover that, like Shatter Island the movie, it is he who is waking up mad (and wounded?) loose in society! At that point I told him it was my acupressurist (sp) lol I cannot tell you how much of a buzz that gave me. Not supplements- he didnt wonder about that at all, I was sure he would start on that old bone. High as a kite now I was. So I said can you blame me for being a little skeptical when this sort of thing happens, arent I supposed to be dead? Dont worry I comforted I will probably have AIDS the next test. I told him past Dr told me I had AIDS for my first test at 230, we dont do that here, he said, I think you are reading too much stuff from the States! Shifting goal posts, classic. He went to defend the dogma-you have been with us 2 years these things ususally take 10yrs lol I said my first CD4 was 230 and the then Dr told me I had been poz for upto 8rs sooo I said I am effectively in my 10th yr. He went to get a blank sheet to draw the CD4 and CD8 vs time graph. I told him not to dare. Not to patronise me with that discredited tool. Shame he was seeking comfort in the dogma. He said well you could be an .....elite suppressor?I finished for him ( I am thinking, no you are an elite oppressor that is all). Not likely I replied to his 'how do you know that?'. (my CD4 has been circa 200 and my VL is currently 102K (previosly 80k in nov and 150k in sept) so how does that thin blanket stretch to include me.) So he went back to the mental stuff. I know that there are psychological issues from my experience with HIV poz people...-how long is that? 8yrs he replied with glee- (he failed to extrapolate the projection into the past of his repeated errors in judgement). I shook my head. He projected all the issues that happen in the people he has broken on me- I nearly lost the plot at that point- he drove his patients to dispair and delighted in picking up the pieces. Satan. He said well I guess we could look at your case clinically. I said really- not by CD4? A first in HIV medicine is that not so I jibed. Well they do that in Africa he replied. And I said- well is that why they mistake everyone with TB for HIV everytime. I looked him square in the eye. He pushed his chair back, way back....the discomfort palpable as he covered his eyes with his hand briefly.

So he said if I could have a wishlist what would I want, the madness recovering Dr mode. I said I wanted to be refered to the London Hospital of Homeopathy. For what he asked. Reiki. Whats that? Energy therapy- its okay, you can call it voodoo if you like! I said lol. He shook his head in dispair. I think he got the messsge- people recover by Massage not ARVs. Why should I pay privately when it is working when there is a free NHS fascility I said? He said he cant promise. He said there is a lady at a different hospital that is looking into this kind of thing lol. He cant promise with the referal coz they are not allowed! lol so much for I am a diety then. Second wish I said- blood serum glutathione to be added to my regualar bloods. Whats that he said, very unconvincing. I asked him to check the computer. He said it wasnt there but could he refer me to the nutritionist. NO No NO. I dont need their help, he wants to take my glory to the inhouse foody, a less jagged pill for him to swallow I bet. She might know this test he bribed. Ask her I instructed. One last barb- so I said if women have lower CD4 and black people have lower CD4 how much would he correct my Cd4 to make it like I was a white male. CD4 varies by race? Yes. i asked him if he would like a print out on that article too. He said there is so much research in HIV, everyone wants to make a name. OMG Yes indeed, I replied, HIV research is prolific, trying to keep up is hard work I said.

cont...

StarZ
April 9th, 2010, 08:59 AM
He had to go now. Other patients. I said could he look at something for me? What he asked perplexed. I showed him the wee wart on my head that I got from not cleaning my hair removing device probably. Is it molluscum- please dont tell me its not PCP I said- big smile from me. No. Its a wart- he looked exhausted. I said does he want to cut it off and send it to a lab? I got wart cream for my AIDS.

In the meantime its now once every 4 months for all patients, he wanted to put me on once every 6 months 'because Im stable'! According to which paradigm I asked. Its either the AIDS will get me or not, decide, if you are convinced I will get worse dont you want to be there to see it, like- are you side-lining me becauseI wont take ARVs- best broken puppy eyes lol. back to 4 months then.

Anyway my CD4/CD8 ratio is stoic at +/-15pc neutrophils 0.7 low (2.0- 7.5). According to the print out my CD4 at 470 is now in the normal range (455-1320)? I wish I could tell you I did something different. If I have I cant think of it. I had whale meat from my Icelandic friends, the day before the test, who insisted I try it in exchange for the gift of shark oil tablets. Whale fat is ok, whale meat is ok. Shark meat smells of ammonia so i had the smallest piece politeness could allow- I am not making a recommendation just stating weird things in my life. Other than that its been very normal. I am checkng my supplements to see if there is anything there...

Im not as thrilled as I seem. I found myself questioning myself, why arent I more happy? I am happy to put a hole in this guy's day, it was just nice to see him say my 'CD4 is awfylly high' doubletake from my face to the screen! But I am not happy because I know all these stats are meaningless in reality. The CD4 and VL seem to have some correlation in my stats and so I wonder are they the samething. Academically this addresses little, for others suffering in the zone it is a bit of hope and more proof this thing is broken beyond repair. A comfort I hope I guess. Don't give up. Dont let them win. The are counting on our ignorance and apathy. Spoon feeding bad information and poison to retain expert status and funding. My life is worth more than that and so is yours.

jonathan barnett
April 9th, 2010, 12:33 PM
These visits are hard on you StarZ, even though I understand why you keep monitoring. Just reading about your challenge to such a deeply entrenched system on their own terms is exhausting. It must be hard to be happy when you are fighting.




Im not as thrilled as I seem. I found myself questioning myself, why arent I more happy? I am happy to put a hole in this guy's day, it was just nice to see him say my 'CD4 is awfylly high' doubletake from my face to the screen! But I am not happy because I know all these stats are meaningless in reality.

G Man
April 9th, 2010, 12:37 PM
StarZ,

Whether you know it or not, you are doing a great service to people on this board who read about your updates. You are doing the right thing, don't question yourself. :)

Brian Carter
April 13th, 2010, 02:24 AM
Jonathan,
I think StarZ gets a kick out of doing this and even a bigger kick writing about it.

StarZ,
I think you're insightful take on the inner working mind of an infectious disease specialist (am I right?) is a joy to read, because as you know most of us won't go there to find out first hand how loony-toon some of the answers really are or even know how or what to ask. How you can do it without facilitating a major argument is beyond me, but I have to give a big thumbs up for having the stomach to do just what you've done and the interesting way you've archived it here for others to read.

In other words: Starz gets STARS.......
http://do.nusd.org/images/2009%20Images/three_stars.gif