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Old 05-08-2007, 10:13 PM   #1
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Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Hello All,

I am Ken and I have been HIV Positive for 10 years. My Partner, Mark, has been tested a couple of times in the past 4 years with the Oral Swab and all of them came back Negative. Then last Feb.'07 I took him in to be tested again. Since Aug. '06, My partner started showing some strange health issues such as, a progressive rash that over about 3 months covered his complete body, weight loss, fatigue, fever, thrush, cyst on his upper inner left thigh. His doctor told him that he had common dermatitis and that over time it would clear up. As I am sure you know it did not. He suggested that it could be something to do with his lymph nodes and did a 24hr urine collection and that came back showing some odd results and a thought of cancer or HIV could be the issue. We had him tested for HIV once again and it came back positive. His viral load was over 750,000 and CD4 below 20 at 2%. This explained some of the issues since all this means he is full blown AIDS.

The results showing him being AIDS still did not explain the other symptoms. I asked his doctor to send him to an oncologist and he felt it was not needed. I tried to reason with him to rule out any kind of cancer. Well after being very forceful, he gave in and made an appointment for us the following week.

In meeting the Oncologist he reviewed his condition and felt that it might be Cutaneous T-cell Non-hodgkin's Lymphoma and ordered more blood work and biopsies. The biopsies came back Positive also. Now we are trying to seek treatment for him for the PUVA but getting in to the only cancer center is very hard with long waiting lists. We waited almost 7 weeks for his first appointment.

Seeking treatment for his Lymphoma is taking time but progressing. As for treatment for his AIDS condition is a different story. So far Mark has had to go on short term disability and does not make enough money to pay for the 2000 dollars for the HIV meds. The federal and state government changed the qualifications for support programs. Now there is a huge gap for people that do not have enough money to access life saving prescription drugs. The all require a person to be 300% below the federal poverty level. last years level was only 150% and he would have qualified for full support but after major cuts to funding they can only service a much smaller load of people. He has until this Friday May 11, 2007 before he runs out of HIV meds. Without the medications he will become resistant to them and his virus will get out of hand and that can be deadly.

We are really shocked that ether the HIV Oral Swab was not preformed correctly or he tested with a faults negative. This is not good since for him to have an AIDS related cancer and other Opportunistic Infections (OI's) he would have had to of been HIV Positive for 7 to 10 years plus, untreated for him to be in the condition he is in. Also, If the testing would have come back correct showing him positive then we could have had him on medication and he could have avoided all the OI's and Cancer all together.

We are having a very hard time getting him the treatment and medications he so badly needs due to all the "Red Tape" and being turned down since to qualify you basicly have to be almost on the streets or be put on a long waiting list....

Thank you very much for listening to our situation. I know Mark is very depressed and troubled by all this. It has been very hard on him and he is in need of lots of support. I give him as much support as I can and am walking along side him all the way through this.

Ken

 
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Old 05-09-2007, 02:43 AM   #2
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

I am so sorry for you situation.

I know that funding for hiv has been cut. It used to a top prioity(sp) I would recommend HERO if they are still around. I haven't heard too much about them.
Could he go on medical assisitance to be able to get his mediciine.

I sure you guys have tried all of this. And you think of all the people in Florida they would have more cancer treatment centers.

Mark is lucky to have you in his life.

If I can come across any other options I will let you know.

Take care
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Old 05-09-2007, 07:52 PM   #3
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

I am so sorry to hear about your partner. As I do not live in the US, I cannot advise as to how to get funding for his treatment but it angers me to think of all the money that is spent on wars and exploring space etc., when we have so many sick people in this space we call earth!

I do hope you are able to get assistance soon.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 05-13-2007, 04:15 AM   #4
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

It sounds to me like you might want to get retested again. The oral swab is supposed to be 99% accurate. The PCR and other tests are so sensitive that if he has a fungus infection or other bacterial infection, you may be getting false positives. I have seen this happen before. A simple anonymous test at a health department in any county in Florida would possibly turn up a new answer which would avoid expensive treatments and place you higher on the assistance list. HIV continues to be a sneaky virus that ruins lives both physically, spiritually, economically and politically.

 
Old 05-18-2007, 01:27 PM   #5
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Marimac, there was no need to have him retested since I have already taken him to my HIV doctor and he did more test and they came back with a viral load of over 750,000 and CD-4 (T-Cell) of less than 20 and at 2%. This is full blown AIDS as I am sure you know. The two times he was tested with the Oral Swab, they both did come back negitive. I had thought that the test was 99% effective but since then I have heard from doctors, pharmacists and advocates that there have been several cases where there has been a false negatives. The common case for this is that the person that is preforming the test did not swab correctly and was not trained right or did not take the time (not much needed) to preform the test right. I have contacted the testing site and informed this and they assured me that they will make sure to retrain there staff in the correct way to do the test. This does not help us in our case but might provide to be useful for others in the future.

Mark has an appointment on June 6th to start his PUVA treatment for the cancer. And he was also able to meet his share of cost due to all the medical expeces he has with Medicaid and they have now covered his HIV antivirals for the month of May. We will have to repeat the same thing for June once again so that he can get his medications.

We also went to a Rally/Protest on Thur. 17th of May. I have included a link to both the articles about this issue in Florida. Basically Florida's Medicaid services are trying to dismantle the specialized programs for HIV/AIDS. The articles tell the story better than I really can here. You might want to take a read of them when you have time.

[url]http://www.pr-inside.com/protest-in-st-petersburg-florida-governor-r124351.htm[/url]

[url]http://www.aidshealth.org/images/phcdmfactsheet.pdf[/url]

For you HIV/AIDS long term survivors, We need to bring back "ACT-UP" once again before things go to Hell in a handbag again.

In love and respect,
Ken

 
Old 05-20-2007, 08:07 PM   #6
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

your post really got my attention, mainly delayed seroconversion. i tested negative at 3,4,5,6 with HIV1/2 blood tests. then negative with oral swab at 8 months. undetectable pcr also at 8....but my dr's are leaning to that possibility. could you please let me know what your HIV specialist says about his situation?


for 10 months i have had swollen glands under my chin, fevers and a rash that an HIV/ID said resembles the ARS rash, but she said this should not go this long with HIV. they are all really confused.

the main factor is severe oral/mucosal/throat disease. any info would help.

thanks

 
Old 05-21-2007, 02:16 PM   #7
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Smile Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

To Mark and Ken,

I would like to say how sorry I am as this must have come as quite a blow!!

Ken you appear to be a very caring and attentive partner which I applaud, please remember though no matter how much support you give Mark, make sure that you have a close friend or family member to support you, as there will be times you need a hug yourself.

I know that I'm not much help, but I will follow your news, and pray for the both of you.

All the best take care Susie xx

 
Old 05-21-2007, 06:55 PM   #8
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Dear Staar80,

I really am sorry your having to go through all this. So I take it that your doctor has preformed all the HIV test. I personally I do not have much faith in the "Oral Swab" form of the HIV test after a personal situation as you have read below and other accounts I have heard of through reliable sources. It may be best for you to take the time to request your doctor does the Rapid "Finger *****" HIV test. This form of the test only takes 20 minutes to have the results. After you do this test, you will want to have a second one done 6 months later. Now this depends of if you also have had any kind of risky behavior during that time. I.E.: Sexual or IV Durgs.

About the lymphnodes, I can only telly you the route that my partner had taken.

1. Visit your doctor and have him/her give you a complete physical.
2. Have your doctor preform a 24hr. urine collection with lab work.
If this gives any odd signs come back that are questionalbe then ask your doctor what they mean. If you want you can ask them to go over the results with you and explain everything. There will be a control range (a range that they consider as normal values to go by). There will be your values and an marking by H=High/L=Low to the control range.

This will tell him/her if your lymphs are showing anything abnormal. If so then you can request a CT Scan of your chest, abdomen and pelvis.

Have all this done and your doctor can send you to an oncologist.

Now this is where Mark and I had a problem. He had the CT Scan and with other symptoms, it came back with a few lymphnodes enlarged yet when we asked to see an Oncologist, his Doctor said,"there was no need." It got as bad as a yelling match till he conformed to my thinking of siding on the caution.

This is when the Oncologist took over and the HIV doctor then became his primary doctor.

Please research your doctor for HIV if you need one. There will be good ones and bad or not as well educated. Just find your local ASO (AIDS Service Org.) and ask them for a list of doctors and what they recomend. Do some checking on the web. We a HIV Doctor that does Clinical Trails. I interviewed him by making an appointment and seeing him personally to see if we would match as a good team. I want my doctors to be team players in my care.

I hope this helps. I will do some checking around more about the other info in your post. Hope I can find some direction for you. I will get back with you.

Hopes this finds you in good health!
Ken

Last edited by moderator2; 05-21-2007 at 07:08 PM. Reason: please do not ask members to violate the posting policy

 
Old 05-21-2007, 07:06 PM   #9
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+



thank you so much for the reply i wish both of you the very best through your illnesses.

i had my 2nd appt. with an HIV specialist today, she said she really does not feel that it could possibly be HIV because of all the tests (3,4,5,6 months blood elisa, and the oral was 8 month only. along with a <50ml HIV1 viral load the same day). but she did agree to do a few more today a HIV2 PCR and a proviral test, i think. she said she thinks if i was just not showing antibodies yet i would have a viral load at least.

it is an ENT and gerneral practitioner who mentioned AIDS. this AIDS dr. i am seeing agreed symptoms are consistant, but said no way would i be sick with fevers, rashes, glands for 10 months.

what do you think about delayed seroconversion? i side with you on the oral test. i had no faith in it. are either of you having oral or throat problems?

 
Old 05-21-2007, 07:16 PM   #10
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+



also... i have had physicals and bloodwork more times than i can count. and nothing looked majorly wrong to them, to me it did....the slight little things that were borberline were enought o bother me.


i have seen a total of 9 dr's and they are sending me in circles.

in my heart i feel this is HIV relates, it all started within days of a sexual encounter- oral (which i know is supposedly low risk) right after my mouth was exposed to a spermicide, i know it broke the skin it burned like hell. the mouth and throat nastiness/pain started 5 days later. glands are swollen for 10 months!!! i think that alone is enought o warrant a biopsy????

 
Old 05-22-2007, 01:32 PM   #11
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Dear Staar80,

I think at this point you might want to contact you local AIDS Service Org. (ASO) and ask them for a referal for a HIV doctor in your area and have him/her check in to what is going on. You may want to see a HIV specialist for this situation. An Oncologist might also be something you might want to check into seeing also. One of the national cancer groups would be albe to help you find a good one in your area.

Ken

 
Old 05-22-2007, 02:57 PM   #12
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Quote:
Originally Posted by OnATorrent View Post
Dear Staar80,

I think at this point you might want to contact you local AIDS Service Org. (ASO) and ask them for a referal for a HIV doctor in your area and have him/her check in to what is going on. You may want to see a HIV specialist for this situation. An Oncologist might also be something you might want to check into seeing also. One of the national cancer groups would be albe to help you find a good one in your area.

Ken
i am seeing a HIV specialist at universityof pittsburgh medical center. this dr. ran a AIDS clinic elsewhere for 6 years. she keeps saying the symptoms resemble it, but she had NEVER seen anybody have ARS symptoms this long, and has NEVER seen anyone take this long to seroconvert. she said in her opinion she thinks there is no chance it is HIV, but still hasn't found what it is. and she agreed to do further HIV testing. she did pro-viral yesterday. she said if these tests come back negative she will do a scan of the glands.

all the dr's keep telling me cancer would show in the bloodwork, but it is fairly normal, slightly anemic,.

 
Old 05-22-2007, 10:15 PM   #13
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Quote:
Originally Posted by Staar80;299***1
i am seeing a HIV specialist at universityof pittsburgh medical center. this dr. ran a AIDS clinic elsewhere for 6 years. she keeps saying the symptoms resemble it, but she had NEVER seen anybody have ARS symptoms this long, and has NEVER seen anyone take this long to seroconvert. she said in her opinion she thinks there is no chance it is HIV, but still hasn't found what it is. and she agreed to do further HIV testing. she did pro-viral yesterday. she said if these tests come back negative she will do a scan of the glands.

all the dr's keep telling me cancer would show in the bloodwork, but it is fairly normal, slightly anemic,.
I would be sure to follow your doctors every direcction. At this point there is not much more I can say other than I wish you the best of luck. Please keep me informed on what happens in the future. I will be intouch here with ya every few days.
Ken

 
Old 05-28-2007, 08:03 AM   #14
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Question Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Hi Mark and Ken,

I just wanted to see how you guys are doing, I hope you both as well as can be expected.

Take care Susie.

 
Old 05-30-2007, 01:51 PM   #15
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Re: Biopsy Positive for Cutaneous T-cell Non-hodgkin's Lymphoma, Then Tested HIV+

Hello Susie,

Mark and I are doing good. We are excited to have Marks Cancer treatments/consult comming up on the 6th of June. I must admit it has geen a very welcoming feeling from this board. You take care Susie and will be watching the messages posted here.

Wishing the best for all,
Ken and Mark

 
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