Just an update Dr Bob!
Jun 27, 2006
Hi Doc. I wrote to you around 6 months ago. The title of my previous post was "Ongoing neuropathy or not". Just thought I'd let you know that many of my symptoms still persist although they are much less severe. I am writing to tell you that you were absolutely right. I tested out until 8 months for HIV... all negative (shock, horror!). Because of my continuing symptoms I was referred to a neurologist who diagnosed Guillian Barre Syndrome (largely sensory with mild motor involvement). Although I was well on the road to recovery by the time the diagnosis was made.
Just thought I would share this with you and urge other worried wells to consider other diagnosis'. Listen when Dr Bob tells you that 3 months is absolutely conclusive... move on and try and find the real cause of your symptoms. As for me... I will still have many months of tingling/burning/numb sensations before I'm better. I'm still a bit worried about what caused my immune system to attack my nerves but we think it may have been CMV. I had a swollen throat for weeks around the same time as many of the other symptoms and tested positive for CMV. Of course it would have been diagnosed sooner if I wasn't so focused on HIV, insisting that my doctor do unnecessary repeat testing. Don't wait almost 9 months like I did to get appropriate help. Good luck to you all.
Formerly "The Nutter"
Response from Dr. Frascino
Hey Formerly Nutter,
Thanks for writing back and sharing your story and the insights you have gained from your experience. Hopefully other "nutters" will heed your advice and become "formerly nutters," rather than "excessive-testing flutternutters." It never ceases to amaze me that so many very reasonable folks allow themselves to become so fixated on the possibility of HIV (despite overwhelming and irrefutable evidence that HIV is not their problem) and that they ignore or avoid proper evaluation of their symptoms and wind up delaying accurate diagnosis and treatment of their condition!
I'm delighted you now carry the prefix "formerly" and have relinquished your nutty perseveration on HIV. (I'll post your initial question below for our readers.)
Get well soon! And then stay well, OK?
Ongoing neuropathy or not Feb 23, 2006
Hi Doctor Bob.
I had unprotected anal sex as the insertive partner following some rather rough oral sex. 2 weeks after this incident I got a buzzing sensation in my arms for a few nights and a heavyness in my chest which felt as though I couldn't breath properly. Around 3-4 weeks after the incident I got a severe sore throat which lasted almost 10 weeks. My throat felt swollen to the point it was almost making me gag. My doc said my throat was heavily varicosed but nothing else could be seen. Swabs were neg. From the 4 week period up until recently I have had tingling in my arms and elbows, soreness and burning under my arms, burning in my wrists, feet, face, chest and sometimes inner thighs and calves. I had several swollen glands uner my arms which went after 4 days or so. I forgot to mention in my other post that I had a mouth ulcer on my inner cheek and a burning tongue and I had the appearance of being sunburn't on my face and neck on and off for a week or two but it was not raised or rash-like. My doc said I had positive 'tenals' signs in both wrists and on one occasion I had a temp of 37'6 degrees celcius. All the other times I took my temp it had been at or below 37.3 degrees celcius but i didn't test my temp until after the 1st 4 weeks because I had not considered HIV until then. I went to see an infectious disease specialist at 8 weeks who did some vibration tests as well as sensation and ankle reflex tests. All were negative. He said my symptoms didn't fit any pattern of STD's including HIV. He thinks I'm a nutter (his words, although stated with tongue in cheek) and that my symptoms are due to anxiety and depression over this episode. I had antibody tests (4th generation) at 4, 8, 12, and 16 weeks. All neg. I had a bDNA test at 5, 6, and 7 weeks all neg. I woo-hoo'd many times but the symptoms have persisted. It is now over 5 months since the incident and my arms still feel tight and heavy, I still get the occasional burning sensations, my chest has a prickly sensation around it and I have recently been getting a feeling of ants crawling on my skin on certain movements.
My Doc and infectious disease specialist said HIV is ruled out completey and my doc wants me to have nerve conduction studies as he is concerned about lesions or demylenation.
What do you think? Could I still be positive after all those negative tests or am I a nutter? I would like to believe the latter. Have you seen HIV cause similar neurological symptoms so early on in the disease? I was also wondering if an effective cell mediated response could delay antibodies or if high dose NSAID's could prolong the period before antibodies are produced. I was taking ibuprofen 600mg x 3 doses a day from about the 5th week to the 16th week to ease the nerve pain (didn't help much).
Response from Dr. Frascino
Nutter. Definitely conclusively nutter!
Have I seen similar neurological symptoms related to HIV? Nope!
Have I seen similar neurological symptoms related to nutters? Yep!
Can NSAIDs alter HIV-antibody production or HIV test results? Nope.
I encourage you to seek the help of a psychologist or psychiatrist who can help you cope with your irrational fears of HIV. HIV is not your problem!
You're one of the first folks I've ever known who was hoping for a diagnosis of "nutter." Congratulations! Diagnosis confirmed!
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