I am not happy with my doctor and blood results

[HowYouDoin]

Hi everyone

For those who don't know much of me i have been poz for about 5 years now and I am on Isentress - Truvada regimen for a a year now. Since I started this treatment my t-cell went from 655 to 585 to 520 to 465 in a span of a year with an UNDETECABLE viral load each time. I expressed to my doctor my concern and he doesn't seem to know know what made my t-cell drop 200 points in a span of a year. My liver seems to be ok and evererything else as well. My cd4 % is in the lower 30's but this blood work it went down to 29% and he is now concerned. He asked me to take a Syphilis test but it came back negative so it isn't that. He also mentioned to me in my last visit before taking the Syphillis test that it could be Lymphoma but he didn't believe so because my lympocytes looked fine so now I am worrying alot.

He didn't take much time with me in my last visit and since i switched from Kaletra to Isentress my t-cell count has been dropping. I am not sure if it is the ineffective meds or something else is going on in my body that is going to kill me. JUst the thought of being diagnosed with lymphoma makes me cringe and feel paranoid. ANyone else have this experience? The fact that the doctor isn't responding back to me like i want worries me and i wonder if i should change doctor.

[drewm]

Your VL being undetectable is good news. Your CD4 count can shift 100 points in one day, between morning and afternoon, for example.

I'm not real sure why you are worrying a lot over your lympocytes since they looked fine.

I, personally, don't see anything to be alarmed about and certainly nothing that would make me want to change doctors.

[mecch]

Why not take your records to another Dr just to get a second opinion. Since its weighing on you. Also it seems the mention of Lymphoma is worrying you, and its not clear by your words, or the words you report from him, if the DOC really reassured you that you don't have that! 

[Theyer]

I have got through 2 bouts off Hodkins Lynphoma ,and although it was not easy and I have on going problems from the treatments, I am living my life and making plans.

Now I can see that it would be better to have numbers increase , but I have felt great and had bad lab results and felt awful with good lab results,

So Darling take the vibe from your on screen representation, if you feel fine day to day dont waste that. Your V/Lis good and lots of us I mean me have not had that many Tcells since 1999.

One reading off your Doc not spending the time with you is that he/she has accessed you do not need it. But its important to feel at one with the Doc so tell him/her next time.
Now please go out and enjoy yourself.
love mhtv
who got going with this reply.

[eric48]

Hi,

I deeply sympathize with you and I wished I had some good clues to help.

First, bear in mind that you are well into the green , safe zone, way far from disease progression.

There are 2 main issues in your post. the CD4 count and relation with doc

First, the possibility of lesser than expected immunologic response, whereas the virologic response is good.
In most people the immune markers (such as CD4 or CD4%) will show a positive response.

Their system is recovering from a 'bad' situation. When starting low, the chances to see an obvious, dramatic recovery are higher than when you are starting high. Your starting point was in the green , safe zone to start with. It still is...

Given the variability of CD4 count measurements, it is a bit early to be over worried.

I have seen my CD4 count drop from 700 to 500 in a month. Or CD4 %  drop a few percent over a month also. The early dynamics of CD4 recovery can be a bit shaky, so there may be some up and downs Your doc is right to try to eliminate any serious potential cause, as a precaution.

The relationship with doc, on the other hand, may need to be addressed if you feel you are not getting the attention you need. HIV, from a psychological perspective, differs from other infections. It can drain a lot of your psychologic ressources... Connecting personally with at least one of your care provider, not necessarily the MD, could be a nurse or helper, whoever is very important.

You need someone to talk to, who can provide professional guidance, explanations and support

You may want to explore your options in that matter

I Hope you'll find some solution

Cheers

Eric

[HowYouDoin]

thank you so much all for your advice, you all have been very helpful. I may have contracted an std and will ask the doctor to test me for all, could that cause my cd4's and % to go down? also with Hodgkins Lymphoma what are the symptoms or at what cd4 cells does it usually happen on?

[drewm]

Lots of things can make your CD4 count bounce. 

[Matt39]

Yes, all the comments about your CD4 numbers are on the ball. So long as the percentage is at a good level too (and *any* percentage of 20 or more in someone 'HIV+' and on meds is fine) then you may well be slightly obsessing about them.
All your other bloods are important - blood sugar, cholesterol, liver/kidney function etc etc, and if they are within normal ranges/not giving cause for concern, then you should allow that to calm you.
As far as STIs are concerned, if you are sexually active at all you should be having the full range done and including for all Heps (A, B and C) *at least* every 12 months anyway, and maybe every six months if you are not in a trusting monogamous relationship, and not just because of a concern about CD4 numbers.
As far as your Doc is concerned, it is reasonable to get a second opinion if you feel strongly enough, or else just calmly explain to him/her that you need more time when you do see them so you can seek better reassurance. But do be aware that it could just be your frustration with your Doc is simply that he/she doesn't see a problem but you do.

Good luck

[HowYouDoin]

You guys are totally awesome and extremely helpful.  I must confess that I have been sexually active with a few men and I have been doing recreational drugs BUT have ended it since my last blood test. I am a new man and have realized that I can not live my life in fear again. Having HIV is hard enough and can not get anything else due to my carelessness.

I did some research about Lymphoma and i appear to have no symptoms except this redish/purple pimple-like rash in my tummy which is slowly getting smaller but still apparent and slight night sweats around my neck. Not sure if that is anything to worry about or I am just being paranoid. I have no anemia and lymphocytes are well so I guess I am ok.

I am re-taking my blood test again in four weeks to make sure I am ok and if they continue to slide lower then I am gonna have to ask for him to change my regimen or find out what is causing it. Lastly I would like to ask you all how often you get a pap smear because it's been 2 year or more since mine and I felt like a little bump up there once but have avoided thinking about it. How often does Anal cancer occur amongst HIV positive people.

[Matt39]

Best not to use the term 'pap' smear - that is really only used for women and cervical cancer.

You should be having a visual internal anal exam once a year as part of a full STI testing. There really is no need for anything other than a swab test unless your specialist STI Doc considers it necessary from a light/camera aided visual exam that shows lesions or internal warts.

*BUT* if you think there is an abnormality in your anal canal then go get it checked out.
NB: Re your new thread and blood in the stool - go to whichever Physician (your regular GP or STI Clinic) you can get to see the soonest.

Don't obsess about it.

And seriously, there is no need to 'confess' about having sex, whether it is with just one person or several. So long as you practice safer sex and have regular check ups, it is not something to feel guilty about.

As far as recreational drugs go, well yes it is certainly best in an ideal world to avoid them altogether.
But reality is that there are differences - smoking pot now and again is not the same as doing Crytsal Meths, Coke, K or even Poppers - all which are extremely immuno-suppressent. Alcohol and cigarettes also put pressure on your immune system, and cigarettes alone are more likely to kill you.
So its balancing your risks, having a good diet and moderate regular exercise - and being emotionally stable and reducing stress.

[bocker3]

Best not to use the term 'pap' smear - that is really only used for women and cervical cancer.

Not really true.  While many think "pap smear" = cervix, it has nothing to do with were the cells being examined originate.  Pap is short for papanicolauo, which is the staining technique used to exam the cells.  You could, in theory, have a "pap smear" from just about anywhere --- if you use this staining technique.  Of course, it is used predominately for cervical cell examinations. However, it would be entirely appropriate to use "pap smear" when talking about the anus too.

Mike

[Matt39]

Not really true.  While many think "pap smear" = cervix, it has nothing to do with were the cells being examined originate.  Pap is short for papanicolauo, which is the staining technique used to exam the cells.  You could, in theory, have a "pap smear" from just about anywhere --- if you use this staining technique.  Of course, it is used predominately for cervical cell examinations. However, it would be entirely appropriate to use "pap smear" when talking about the anus too.

Mike

I get what your saying Mike.

My own HIV Clinic is a centre of international excellence and research into anal cancer for men who have sex with men.

I happened to attend a talk given by the clinic consultant recently, who is an expert on anal cancer, and he went through the diagnostic process. He didn't mention using the smear technique. He described the diagnostic process as:

Digital Rectal Exam
Anoscopy
Biopsy.

But I can see how the PAP could be applied to that, just surprised he didn't mention it.

[Hellraiser]

I get what your saying Mike.

My own HIV Clinic is a centre of international excellence and research into anal cancer for men who have sex with men.

I happened to attend a talk given by the clinic consultant recently, who is an expert on anal cancer, and he went through the diagnostic process. He didn't mention using the smear technique. He described the diagnostic process as:

Digital Rectal Exam
Anoscopy
Biopsy.

But I can see how the PAP could be applied to that, just surprised he didn't mention it.

He did he just didn't use terminology you are familiar with.  A pap smear is a biopsy.  There is a tendency for it to be associated with women, so the doctor may have used biopsy in place of pap smear to avoid confusion.

[newt]

It is unlikely you have cancer if your lymphocyte count is normal in total. If you get a virus this might go down, as might your CD4% or count (cos the CD4 cells have gone off to tackle the virus). One test does not a trend make, these counts are like a see-saw. Go get your bum checked.

[Matt39]

He did he just didn't use terminology you are familiar with.  A pap smear is a biopsy.

Apparently not. A biopsy takes far more cells than a 'smear' and when dealing with men and suspected anal abnormalities they go straight for the biopsy. At least that's how they tell me they do it at my clinic.
But it could be down to different protocols at different clinics - I'm in the UK and they tend to operate according to a nationally defined protocol.
In women a biopsy is done after an abnormal 'pap' smear to investigate further.