[Question #4691] Confused about testing accuracy

29 months ago
I believe I was infected in early July 2017. After 9 days with a new partner (if known for 8 months) I woke up with tingling / burning in the back of my thighs and buttocks . It got progressively worse throughout the morning and i started feeling feverish and panicked. I googled and saw it could be a sign of hsv onset. I quickly called my dr and received a RX for acycli and started it within 3 hours. I took it for 3 months and noticed only sling changes but no sores... red bumps on buttocks and thighs. After trying to learn about hsv I realized that RX upon outset skews test results so I went off the meds (3 months later).  I had already tested w pcr swabs and igg , negative. After going off the RX I started having severe burning, irritation, white spots in genital area, skin changes / bumps on my scalp , neuropathy from mid back to almost my knees and stubborn yeast infection... extreme irritation in genitals. I also had numb soles of my feet constantly for 8 months. I tested every other week for those 8 months. I had blood work and pcr swabs 2-4 times a week for 7 straight weeks and then 2x a month after that. I had 4 western blot tests for hsv. This has been going on now for a full 17 months and Im still testing 2x a month (random pcr swabs and / or igg) because I’m still experiencing symptoms but much more intermittent now. 1-2x a month for maybe 4-5 days I get burning, itching and neuropathy in my waistband , sometimes groin and front : back of thighs. I’ve been to 47 drs and Mayo Clinic . I’ve spoken to u of Washington vir Clinic multiple times. All other possible causes have been ruled out, but drs refuse to even consider the tests might not be picking up the virus in me. They say it’s  basically impossible for my tests to still be negative and me to have the virus. I do have 2-3 drs who say it it could be hsv based on my compilation of history / symptoms  but can’t explain the repeated neg tests. I’ve been to some of the best ID drs in the US including mathe 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
29 months ago
We used to talk frequently and I recognize who you are.  I do not believe that you are infected with HSV - not at all.  And if you were to have availability to the other docs on this website, they would tell you exactly that same thing.  It is so sad to me that you are still stuck on this idea that you have herpes.  Despite multiple negative PCR test and multiple western blots, you have convinced yourself that you are infected with herpes.  There is no new information that you can glean from this website or the clinicians here.   I know this probably sounds harsh but there is no good to be gotten from continuing to have this discussion. 

If you have  decided that you have really have herpes, despite EVERYTHING that says you don't, then perhaps it is best for you to live as though you do - taking daily antiviral medicine and disclosing to potential partners that you think you have genital herpes.  Really -what is the alternative?  Living as you do, running from doctor to doctor to find someone who agrees with you?  This is limbo.  I know you have sought psychological help but that didn't work out.  I would suggest either deciding that you have herpes and living as though you do or  deciding that you don't and living that way.  This limbo is getting you nowhere.


Terri
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28 months ago
Hi Terri, thanks for your reply. I know everyone thinks I am crazy, but after 17 months of literally being tested for everything under the sun, there seems to be no other explanation. Before the encounter I had not a single solitary physical complaint except a minor headache once every few months. Now, I am in discomfort daily. I've had multiple MRIs of the brain, spine, biopsies, nerve conduction studies, etc.  Mayo clinic determined that I have some small fiber neuropathy. Dermatology thought there was something "throwing off the flora" of my body. A specialist I saw today said someone as young as me, and in as good physical condition, does not simply wake up with neuropathy out of nowhere and there has to be a root cause. Due to the depth and breadth of symptoms (neuropathy, numbness, tingling in so many areas  - groin, legs front and back, soles of feet, mid back, hips, buttocks) she thought it had to be something systemic like Lyme or herpes, some autoimmune problem or another virus. Of course I have been tested for all of the above (and more) dozens upon dozens of times, so back to square one. 

Reading numerous patient blogs and JAMA regularly, I find scores of people who have actually been diagnosed with HSV2 / 1 and have similar widespread neuropathy that started right after acquiring the virus and many have been dismissed by their doctors and are quite distraught about it. The CDC reports that 87% of people who have HSV do not know they have it, although I struggle to understand how they could possible figure that out. If the patients don't know, I am stumped as to how they are coming up with that analysis. JAMA reports that they did a study where they autopsied people who had idiopathic  neuropathy during life and 40% of those cadavers that had lifelong neuropathy, with no discernable reason (back problems, etc.), were confirmed to have had HSV (during autopsy) and the patients had never known during their entire lives that they had HSV and their neuropathy was potentially / likely caused by it. I reference this type of reporting to all the doctors I consult with and 99% of them have no idea of any of this and have never heard anything about it. That is particularly alarming to me, as it only took me reading the CDC reports / FAQs and JAMA on the subject of HSV. The information wasn't hard to find.  

I know there was another blog post that I read where someone had similar symptoms to mine, tested negatively (monthly) for well over a year and then suddenly tested positive out of the blue. She had been with no one physically during that full year of negative tests. I understand that you can no longer help me with this and I appreciate your continued feedback. I have been referred to another dr. today who will do another round of testing (viruses (HSV, etc.), lyme, autoimmune, etc.). The doctor I saw today said she doesn't trust any Lyme test unless it comes out of a specific lab in CT and she has had patients who have repeatedly tested negative for Lyme and when they submitted specimens to that particular lab, the test showed positive. I suspected something similar might have been happening with me and the HSV tests in the beginning, but I am now up to at least 20 IGG blood tests, 4 Western Blots and close to 100 PCR swabs. I did speak to one ID Dr. who said he had one patient who never built antibodies to HSV - ever - but she was diagnosed from a swab (I continue to wonder about the testing). 

Either way, most of the doctors I've spoken with agree that there has to be a root cause to the symptoms continuing for almost 18 months, so I will keep searching. Thanks again and I hope you are doing well. 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
28 months ago
Reading numerous patient blogs and JAMA regularly, I find scores of people who have actually been diagnosed with HSV2 / 1 and have similar widespread neuropathy that started right after acquiring the virus and many have been dismissed by their doctors and are quite distraught about it. The CDC reports that 87% of people who have HSV do not know they have it, although I struggle to understand how they could possible figure that out. If the patients don't know, I am stumped as to how they are coming up with that analysis. JAMA reports that they did a study where they autopsied people who had idiopathic  neuropathy during life and 40% of those cadavers that had lifelong neuropathy, with no discernable reason (back problems, etc.), were confirmed to have had HSV (during autopsy) and the patients had never known during their entire lives that they had HSV and their neuropathy was potentially / likely caused by it. I reference this type of reporting to all the doctors I consult with and 99% of them have no idea of any of this and have never heard anything about it. That is particularly alarming to me, as it only took me reading the CDC reports / FAQs and JAMA on the subject of HSV. The information wasn't hard to find. 

We know 87% of people who have herpes don't know it because they are positive by antibody test for HSV 2 and yet report that they have not ever had herpes symptoms.  Easy.
As for the autopsy study - that is not enlightening in any way to your situation because we have no idea what their antibody status would have been - we know you are negative for antibody. 
These two studies that you cite have nothing to do with your particular situation.

Terri
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