hiv/non hodkins lymphoma
Feb 15, 2009
I will try to keep this message as short as I can in the hopes that someone may actually read to the bottom since it will be lengthy and help me as I need the help more than you know.
I have been sick for 8 months. This will get 'graphic' and I know no one wants to hear my life story but I feel it necessary to tell this. I guess I will start from the beginning. I'm 32year-old female. I have battled depression and anxiety for about 15 years. 8 months ago I got drugged and raped and this wound me up in a mental hospital for about 10 weeks after a weak OD suicide attempt. I was put on several meds, at one point like 10 different ones. About 2 weeks after my admission I developed a urinary tract infection which was claimed to be MRSA. I was put on Septra. A few days after the Septra I got ill. I developed a fever and rash. It was about 4-5 after the rash that the mental hospital actually sent me to a real hospital and was later determined that the rash was some sort of reaction to the sulfa or one of the other meds I was on. I was sent back to another mental hospital and there I recieved ECT (electro convulsive therapy) I recieved like 8 bilateral treatments. I have lost about 2 weeks of my history there so I cannot remember exactly what went on medically to me. Anyways the rash subsided a few days after discontinuation. I then develped elevated liver enzymes and high piotassium among other bloodowrk disorders and this horrible heightened sensitivity to smell. After being told that the liver and some other things were clues to AIDS or HIV but the HIV test was negative so the fatty liver was blamed on the allergic reaction, and the liver enzyme issue also resolved on its own. At that point I had lost memory of the rape and so was screaming to the doctors I have been with the same man for 15 years and I know I don't have HIV. WEeks later I recovered memory bout the rape and started to wonder if all these symptoms were actually acute hiv syndrome. (I have had a negative 6 months test by the way) But the thought still lingers that for some reason I haven't seroconverted yet because I am unsure but do recall talking to doctors when i first went in mental hospital about prohylaxis and a morning after pill to end the pregnancy if I was pregnant from the rape. And I believe they treated me empiracally for all STDs. So I don't know what all went on because of the lack of memory. When I got some of the records back months later I was amazed at all the meds I had took and there was even a drug called Imuran on the meds list but beside it was the word error so I don't know if I indeed recieved it or what. I can also vaguely remember talking to docs about anonymous testing and that they would leave off this from the mental hospital record because it had nothing to do with my mental issues.
Oh and about 4 weeks after the rape I also developed group C strep in my throat.
Anyways I got out of the hospital and was told to follow up with urologist because of the MRSA. I went back to him and had another urinary tract infection but he said no MRSA and didnt believe I had ever had it. I was treated with more antibiotics and continued to have frequent trips to the bathroom. After about 4 months the urinary symptoms subsided. I also had a yeast infection during htis time but I attribute taht to the antibiotics as tehy tend to give them to me.
I never felt right after I got out of hospital. Fatigue, nausea and a persistent mild sore throat. I went to doctors who tried acid reflux and allergy drugs for about a month and none of these helped. I developed swollen lymph nodes in the neck which were confirmed by CT scan. I also beleive there may be other swollen ones because I have odd aches under my arm but more so toward my breasts and also dull aches in my pelvic region but they are not in crease of my legs, they fell more in the area where one gets mentrual cramps. Doctors have felt no swelling in the other nodes other than my neck but the ache will occur off and on and is extremely mild. So they aren't of much concern to me. Everytime I would go to the doc they shrug off all my symptoms of sore throat arthritis fatigue and dull aching of body on my mental illness. It wasnt until the CT scan of my neck nodes that they actually took me seriously.
I was referred to ENT. He took an instrument down my nose and told me your lingual tonsils are real swollen and your nose looks like you have either had it packed or broked real bad but I haven't. Anyways after he looked at the cat scan he said yes these are very enlarged and put me on Clindamycin after negative monospot and CBC (I have taken umpteen zillion antibiotics since the start of all this) Anyways I took the meds and after the next visit no improvement and he did an excisional biopsy of my lymph node after telling me it was highly suspicious of cancer due to their size. He said the node was matted and over 4cm in size. After the surgery he went on vacation. I had to have another doctor take out the staples. He claims I need to wait for the doctor to come back from vacation to discuss the results but report looks like reactive nodes of unknown reason. I figured after the biopsy they could pinpoint the cause. The doc still isnt back from vacation (I had surgery 2 and half weeks ago) so i asked for biopsy report so I could do research of my own) Big mistake as I am more scared than ever. I will state some of highlights of biopsy report in hopes that someone may be able to shed some light as I cannot even think of anything but this and my followup appt isnt until end of next week and I need answers. I feel I should have gotten a better explanation from docs. You just dont tell someone you think they have cancer and then leave them stranded for weeks while you go on vacation with no explanation.
The report states..."Immunophenotyping fails to reveal a monoclonal B-cell population or an abnormal T-cell immunophenotype. The T helper/suppressor ratio is increased though this may be seen in reactive conditions, it may be seen in non-hodgkins lymphoma. Favor reactive lymph node case submitted to hematopathologist for consultation." I wont type the whole report but here are other thigns taht scared me...."lymph nodes display various reactive changes consisting of florid follicular hyperplasia as well as interfollicular hyperplasia with that manifesting itself as pericortical hyprplasia. Somewaht thickened capsule and areas of follicle lysis......all lymphocytes stain + with CD45 with CD20 decorating reactive germinal centers and mantle zones and CD3 decorating predominantly interfollicular lymphocytes. BCL-2 doesnot stain the reactive germinal centers but stains mantle zones and interfollicular lymphocytes appropriatly positve. No staining for BCL-1 is demnstrated. No staining as would be seen by Reed-Sternberg cells is demonstrated by CD15 or CD-30. All internal and external controls react appropiatley. there is more but I feel that info is the most important. The last time I talked to doc he said they were waiting on one other report or soemthing but I guess I will find out that info when I go for follow up to see how the incision is healing.
Okay. So I am 2 and half weeks post op and after a week of antibiotics my incision opened back up and is draining again. The pus is yellow but does not smell. I called the doc and he said as long as pus is not white it is ok. And I''m not in much pain and my temp is only slightly elevated- the highest is 99.9. There are 3 white dots on inside of mouth on side of surgery and my lingual tonsil I guess is what you call it is realyl swollen on that side but only mild soreness in throat. I am also having sensation of eating something sour when I eat stuff like a pucker or spasm like. But I guess that is all from surgery idk. i have had extreme fatigue since surgery, even worse than since this whoel thing began. I cant even cook for my family.
Anyways there is so much more to the story but to cut to the chase I am scared as I have ever been in my life and need some advice. I have been to doctor after doctor after hospital. It wasnt until they finally did the CT scan on neck that they even took my symptoms seriously.
I don't know what to think. I did have a 6 month hiv test which was negative and am telling myself to put that out of my mind but after the whole Imuran scare and the hepatitis and the empirical antibiotics and postprophylaxis I wonder if I hadn't seroconverted or something. I am still sick. I am not really depressed and the only mental issues that are remaining is just fear so I do not believe my mind is creating the aching in my underarms or groin. (which are extremely intermittent) and the arthritis went away completely. At one point in my hospital stay I jumped off some stairs and wondered if the arthritis could be from that. And need to add the whole urinary thing happend the day after that jump becaue I couldn't pee for like a day and half and then they catheterized me and sent me to medical hospital and there I was diagnosed with MRSA but upon calling that hospital back weeks later they claim they never said I had MRSA. It is all fishy and due to the 2 weeks of memory erasure from the ECT I keep tumbling over everythign in my mind.
I know this post has not made a lot of sense. It has been months of turmoil and I'm not sure how much I can take. I need to get well and be able to take care of my family. I know some of you will probably shrug this off as mental crap but I can assure you I am clearheaded. I do cry almost everyday now and have even asked myself could the whole groin and underarm aches be in my head because I wish they were but they even occur days and days after Im not even thinking of it anymore as I do have good days now and then where I am at peace. If they were psychological wouldn't I have to be thinking about it for them to happen. I'm scared I have HIV or cancer. How likely is it that the 6month negative HIV test is conclusive with all this going on? What about the non-hogkins lymphoma thing? Wouldn't they know what my lymph nodes reacted to if they did an extraction. I asked the doc if this all could be from the 'drug reaction' I had and he said the swollen nodes would not be swollen this long from that. Isn't nodes over 4cm pretty serious? They are still not going down and my throat on the inside looks wierd and the those white bumps on that side scare me. Also is it normal for the incision to open back up after it was closed for 5 days and start draining again? I bet I got 2 tablesppons of pus out of it today after I used a warm compress. I also have mild numbness in my chin but I hear that is somewhat normal. I lie on the couch almost all day long and when I do try to get up and get active to make myelf feel better like say, go to the grocery or visit a store to get my mind off things I get so fatigued and sick. I do have somewhat good days here and there where I feel some better but not many. I have only cooked 2 meals since the surgery. My husband has had to take on all that.
I am so so sorry for the long post and I doubt anyone even made it to the bottom, but I am asking, begging, if you did and can offer any insight I would so deeply appreciate it. More than you know. THe fear I feel is numbing. I'm trying to turn to God for help and guidance but feel so guilty because I only turn to him in times of trouble. I can't believe the surgeon left for vacation and left me with no explanation. I mean do I have to worry in the future about these nodes since they were so big even if they dotn turn out to be malignant now. How come they aren't subsiding? The CBC I had before the surgery showed no infection, wouldn't hiv or cancer show on that as well. Geez I bet I sound like a madwoman with all this but I have rolled over so many scenarios in my head it is crazy and the memory thing is horrid. I have always been a fan of ECT but now I am having life-altering aftereffects because of the memory loss. It is like I lost 2-3 weeks of my life and it messes with my mind like you wouldn't believe-almost surreal.
Okay I will end this post now. I once again thank you and look forward to insight. Thanks and God bless.
Response from Dr. Frascino
Actually I did read through your entire tome. First off, congratulations on winning our Train Wreck of the Month Award. I don't mean to make light of your situation but dearie 15 years of depression/anxiety, getting drugged and raped, a stay in the metal hospital for an overdose-suicide attempt, MRSA urinary tract infection, allergic reaction to antibiotics, electro-convulsive-therapy, amnesia from ECT, elevated liver enzymes, "bloodwork disorders", heightened sensitivity to smell, group c strep throat, yeast infections, swollen lymph glands, abnormal CT scans, lymph node biopsy, vacationing ENT surgeons, post-op draining incisions, being told you might have cancer, fears about HIV, etc. etc. etc. --- this sounds like a whole season of Grey's Anatomy and ER combined!
What's important to realize is that being frightened you have HIV or cancer is very different from actually having HIV or cancer. Despite your impressively lengthy post, my response will be brief. Your negative HIV test at six moths is definitive and conclusive. HIV is not your problem. No way. No how. I see nothing in the biopsy report that is suggestive of Non-Hodgkin's Lymphoma or any other types of cancer. I agree your surgeon should have arranged for appropriate follow-up while he was on vacation. Your major medical problem continues to be psychiatric. And I urge you to have ongoing treatment with your psychiatrist and a competent internal medicine physician. The internist should coordinate any subspecialty care you might need. He would also be able to allay unwarranted fears, such as your recent anxiety over HIV and cancer.
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