Help with HSV IgG testing!

[Ironman22]

Hi Guys hope everyone is well.

So I have hit the 4 month post possible exposure mark. Depression and anxiety has been extreme. Weeks of insomnia and not eating. Currently on anti depressants and Nurica for what seems to be nerve pain. I have not had any outbreaks. Only what seems to be Urethritis but it hurt really bad for 1 day and then felt so much better the next day? Very strange.

I did Have an IgM and IgG test done at 11 weeks that was negative for HSV. The Person I was with also had the test done with negative Igm and IgG. 
 

My question is how accurate would the IgM and IgG blood test be at 4 months? I do not have access to the Western Blot in my country but I am willing to ship a sample from here to get it done if need be. 
 

So difficult have this disease diagnosed if you do not have the classic symptoms. I have not had any fever, swollen lymph nodes etc. Really struggeling mentally with all of this.

Any help will be appreciated!

 

[Ironman22]

Might also be worthy to note that my stomach has been up and down as well. First constipation, then loose stools. My appetite has been non existant for the last 2 months, I have started eating more but it is way less than usual. Don’t know if it may be due to the medication I am on or from anxiety?

[Bloomer]

Hey @RudiK! 

Most people who are infected with HSV will be positive by 12 week mark. Some will need more time and those are usually people who are immunocompromised. Unfortunately some people who are infected will never test positive on standard blood tests even if they take Westernblot. Standard blood tests miss 25 percent of HSV 1 infections and around 8 percent of HSV 2 infections. 

Please can you write again what are your symptoms exactly? What made you think that you have hsv and what was your exposure if I may ask? 

So sorry for your situation. I know it is hard to get proper diagnosis if you don't have classical presentation of hsv infection. We need better tests and better treatments for this infection. 

[Seeker1960]

Hello @RudiK I know how you are feeling. The not knowing is so frustrating. You might or might not have HSV. Your partner is testing negative do they have any symptoms? You might just have some other urinary issue going on. The person I received HSV1 tested positive for HSV1 & HSV2 so I knew I was exposed before I tested positive. It took over 12 or 13 weeks before I tested positive on an igg test. I first tested positive via Western Blot.

I also did not have the typical symptoms and still don't. I have neuropathy and related symptoms of burning, itching and other nervous  system issues. Good luck in your search for answers but don't overly worry. You might not even have HSV.

[Ironman22]

1 hour ago, Bloomer said:

Hey @RudiK! 

Most people who are infected with HSV will be positive by 12 week mark. Some will need more time and those are usually people who are immunocompromised. Unfortunately some people who are infected will never test positive on standard blood tests even if they take Westernblot. Standard blood tests miss 25 percent of HSV 1 infections and around 8 percent of HSV 2 infections. 

Please can you write again what are your symptoms exactly? What made you think that you have hsv and what was your exposure if I may ask? 

So sorry for your situation. I know it is hard to get proper diagnosis if you don't have classical presentation of hsv infection. We need better tests and better treatments for this infection. 

Hi Bloomer. The exposure was unprotected sex. Initial symptoms were Urethritis (about 3 weeks after exposure) Was treated with 3 Antibiotics ( Azithromycin, Doxicycline and Flagyl) after I did tests for STd’s but none came back positive. Symptoms were gone about 2 weeks after treatment. At the end of the antibiotic treatment I started to feel some pain in my left lower back. At this stage my depression and anxiety was very high and I was also not sleeping or eating(no appetite?) Fast forward until now Anxiety and depression has become the norm, lots of suicidal thoughts. Can’t sleep or eat.
Had môre tests done for HIV(multiple) HSV(last was 10 weeks after exposure including HIV) and all the others aswell. Went to hospital and was submitted for 5 days where a specialist physician and Neurologist did a multitiude of tests on me. Only treated for my headache (MRI confirmed severe spasm in neck, got physio and the headache is gone). Only thing they could find was that I recently (between 4 and 6 weeks ago) had Rickketsia by IgG(high levels)

CT scan and sonar shows no swollen lymph nodes on my body but I do feel nerve pain in my groin and legs. Not constant pain, it comes and goes. 

Still have the twitches that seem to intensify extremely when my anxiety kicks in. Tests were done by Neurologist and they found no problems with my nerves. Was told to get anxiety under control. The twitches are basically over my whole body. Nerve pain in my sides, hips, groin, sit bones and neck a still stiff. Been taking Nurica and antidepressants for 5 days now. Anxiety and nerve pain is better but not gone by a long shot. Twitches are less. Last week in hospital i felt a slight discomfort in my penis. No pain when urinating. Told the doctor, they did Urine analysis twice for multiple bacteria. Nothing came up. Feeling stayed the same(not severe) Sunday night it suddenly started to pain like crazy up until Monday evening. Pain was excruciating. Took a sleeping tablet + Nurica and this morning the pain is much less but still sensitive.

Yeah I just don’t know what the hell is going on with me. Everyone seems to think it’s all in my head. I have never been so depressed and Anxious in my life. Don’t know where to go from here.

[Ironman22]

1 hour ago, Seeker1960 said:

Hello @RudiK I know how you are feeling. The not knowing is so frustrating. You might or might not have HSV. Your partner is testing negative do they have any symptoms? You might just have some other urinary issue going on. The person I received HSV1 tested positive for HSV1 & HSV2 so I knew I was exposed before I tested positive. It took over 12 or 13 weeks before I tested positive on an igg test. I first tested positive via Western Blot.

I also did not have the typical symptoms and still don't. I have neuropathy and related symptoms of burning, itching and other nervous  system issues. Good luck in your search for answers but don't overly worry. You might not even have HSV.

Hi Seeker

So she is not my partner. I tracked her down about 3 weeks ago and got her to do the HIV ,HSV 1+2 IgG+ IgM test. She was happy to do them. Also she says she has never had any symptoms before.

[Bloomer]

Do you have a history of cold sores? Was oral sex involved? Sorry if I ask too much. 

Anxiety can put a havoc on our body and produce all kind of symptoms. For example it can have influence on our muscles because sometimes people will clench muscles during anxiety attacks. Your muscles than become tight, then tight muscles irritate nerves and viscious circle begins. I am not telling that this is causing your symptoms but it's worth considering. Does your nerve pain become much stronger after physical activities? Is your nerve pain constant or irregular? 

I don't know can you contact Terri Warren? She will provide you an information where and how to obtain Westernblot. 

[Ironman22]

Hi Bloomer. I have no history of cold sores but my test did come back low positive IgG for HSV-1. The nerve pain does seem to be worse when I move about. The did a scan of my lower back and could not se anything compressed. My work does include driving lots on bad roads, so I don't know if that can be the cause and that the anxiety makes me feel it. Still not sure about the pain in my penis. 
 

I am sure I could contact her via E-mail if possible. Seems like a lot of people think she does not acknowledge strange symptoms and HSV?(Have been searching the forum like crazy)

[Bloomer]

Yeah, she will probably tell you that your symptoms are not hsv related but she can provide you info how to get Westernblot testing.

Have you been checked for groin hernia? Exam has to be done by surgeon who is well trained in recognizing hernias. Exam is done by palpating your lower abdomen. Groin hernias can cause pelvic floor muscle dysfunction which can produce all kind of symptoms. 

[Ironman22]

No I have not. But they did do a CT scan of the area and nothing was abnormal? I will ask my Physician about the Hernia.

Yes I contacted the University of Washington Directly. Not a simple task to ship the sample from here. But I am willing to do so if it can give me any piece of mind. Damn I really do feel like I’m going crazy.

[Bloomer]

No, CT scan is not suitable for detecting hernias. During hernia exam you need to be standing and than doctor manually checks your lower abdomen. While he palpates your abdomen he will tell you to cough or strain. After manually checking, doctor will do an ultrasound of your lower abdomen to confirm diagnosis. 

If you can afford please do the Westernblot testing. This test is much more accurate then standard blood test and will give you better perspective of what is going on. 

[Ironman22]

5 hours ago, Seeker1960 said:

Hello @RudiK I know how you are feeling. The not knowing is so frustrating. You might or might not have HSV. Your partner is testing negative do they have any symptoms? You might just have some other urinary issue going on. The person I received HSV1 tested positive for HSV1 & HSV2 so I knew I was exposed before I tested positive. It took over 12 or 13 weeks before I tested positive on an igg test. I first tested positive via Western Blot.

I also did not have the typical symptoms and still don't. I have neuropathy and related symptoms of burning, itching and other nervous  system issues. Good luck in your search for answers but don't overly worry. You might not even have HSV.

Hi Seeker 1960

I saw on other post you said you did not have any typical HSV symptoms. Would you care to share your symptoms?

Did you ever get Urethritis?

[Seeker1960]

It started a few days after protected sex with a new partner. I also received unprotected oral. It started with an itch on my scrotum. No OB. Then I got night sweats and a electric like feeling through out my body. Felt like my inside nerves were vibrating. Then I developed a burning in my perineum which also included my scrotum. Felt like I was on fire. I also had urethritis. I also had CNS issues like gastroparesis for a while. I did everything you did. I Took a bunch tests, antibiotics so on. I contacted Hunter Hansfield, Terri Warren & Ana Wald. Terri Warren and Hunter Hansfield although they are respected in the field they don't acknowledge that HSV causes nueropathy.

They stick to the idea that this is a skin disease and that it presents with the typical blistering lesions. They are wrong in that regard. I still have nueropathy and I finally test positive on the igg and West Blot for HSV1 only.

It calmed down after about 2 years until recently. I got the last covid booster and flu shot.  The hit on my immune system has triggered it and I have been back with daily nueropathy symptoms like burning butt and back and leg pain for the past month. It seems like it's calming down. I am taking the Lion's Mane that @Bloomer suggested.

You tested positive foe HSV1 which could be oral but with your symptoms you probably have GHSV1 like I do. I think I have developed some other CNS issues affecting my sleep now.

Bottom line is you need to keep your anxiety in check because it does make it worse. You can  live  with this just have to manage it. Not worth ending your life over. The good news is they are working on different things but are a still a few years out.

Hang in there you're not crazy and the "experts" don't know everything about this. The new researchers are learning more and understanding how the virus is affecting the nervous system. 

Hang in there buddy. Keep living it should and will be better in time.

 

[Seeker1960]

Hey @Ironman22 How is Nurica for nerve pain? Side effects?

[Ironman22]

22 hours ago, Seeker1960 said:

Hey @Ironman22 How is Nurica for nerve pain? Side effects?

Hey seeker

I only got started on it 6 days ago. My nerve pain seems to move/ come and go. Today not much in my hips and after Mondays crazy pain in my manlihood it was almost gone for the whole day right untill now before going to bed. Seems to be coming back? 
 

Driving me crazy. Think I might have to go see a Urologist to check what the hell is going on in there. I can deal with the hip, leg pains but damn these are killing me.

[Ironman22]

1 minute ago, Ironman22 said:

Hey seeker

I only got started on it 6 days ago. My nerve pain seems to move/ come and go. Today not much in my hips and after Mondays crazy pain in my manlihood it was almost gone for the whole day right untill now before going to bed. Seems to be coming back? 
 

Driving me crazy. Think I might have to go see a Urologist to check what the hell is going on in there. I can deal with the hip, leg pains but damn these are killing me.

No side effects noted so far. I take 25mg in the morning and 75mg at night. 

[Ironman22]

On 11/29/2022 at 9:04 PM, Seeker1960 said:

It started a few days after protected sex with a new partner. I also received unprotected oral. It started with an itch on my scrotum. No OB. Then I got night sweats and a electric like feeling through out my body. Felt like my inside nerves were vibrating. Then I developed a burning in my perineum which also included my scrotum. Felt like I was on fire. I also had urethritis. I also had CNS issues like gastroparesis for a while. I did everything you did. I Took a bunch tests, antibiotics so on. I contacted Hunter Hansfield, Terri Warren & Ana Wald. Terri Warren and Hunter Hansfield although they are respected in the field they don't acknowledge that HSV causes nueropathy.

They stick to the idea that this is a skin disease and that it presents with the typical blistering lesions. They are wrong in that regard. I still have nueropathy and I finally test positive on the igg and West Blot for HSV1 only.

It calmed down after about 2 years until recently. I got the last covid booster and flu shot.  The hit on my immune system has triggered it and I have been back with daily nueropathy symptoms like burning butt and back and leg pain for the past month. It seems like it's calming down. I am taking the Lion's Mane that @Bloomer suggested.

You tested positive foe HSV1 which could be oral but with your symptoms you probably have GHSV1 like I do. I think I have developed some other CNS issues affecting my sleep now.

Bottom line is you need to keep your anxiety in check because it does make it worse. You can  live  with this just have to manage it. Not worth ending your life over. The good news is they are working on different things but are a still a few years out.

Hang in there you're not crazy and the "experts" don't know everything about this. The new researchers are learning more and understanding how the virus is affecting the nervous system. 

Hang in there buddy. Keep living it should and will be better in time.

 

What is the Lions mane used for? Where can you get it?

[Seeker1960]

Lions Mane is a natural antiviral from a mushroom with the same name. I am hoping it will help address the nerve pain also. Can't hurt to try it.

[protacotaster]

Ironman,   your loss of appetite I believe is from the HSV....  I've had it around 20+ years now...  But that nausea or not wanting to eat usually happens for me during the prodrome stage (just before an outbreak)  Then once the outbreak happens... I can eat normal again and want delicious food once more...

Just understand that's what's going on though and done look any further...  I've been there done that... visited many a Dr....  Had many Blood tests too cause it makes a person believe something else is wrong... And no it's probably not from any pills though I don't take them...  I'd rather deal with HSV naturally that way when it gets better... I know my immune system did it's job and not a pill...

 

Advice- eat a low fat balanced diet...  cut out greasy foods during these times...  Get rest as much as possible even though Insomnia can be a problem during these times too...

[Ironman22]

Hi Protacotaster. So most of my symptoms have been related to severe stress and anxiety. About a week and a half after starting anti Anxiety meds my appetite slowly returned. I travelled to the US and got the Western Blot done at UW at 6months post possible exposure and my test came back negative. I have also not had any lesions to swab. The Anxiety meds have also calmed my muscle twitches and nerve pains,and they only flair up the day after heavy drinking when I feel very Anxious or when I don’t get enough sleep(like 4-5 hours a night). I have never had any nausea. I am really hoping I can put this behind me now. It pushed me over the edge and I found myself with a gun in my mouth twice because I was convinced I had it. I still struggle with depression and anxiety as the negative results seems so unreal. Just not sure what other tests I can do to be sure I don’t have it, esp 6 months later.

[40sBritishMale]

Ironman22, your symptoms sounds quite close to mine. I have had it for nearly 6 years now (I still haven't actually had this confirmed by a swap since no spot ever lasts longer than a week and they are not like blisters at all, they don't erupt, they are quite dry). I feel like I have symptoms all of the time in one form or another. I have seen doctors, urologists and recently a neurologist but I am still stuck in the same place. All tests come back negative.

Here are my symptoms:

- Intermittent testicular pain (both testicles, together and separately)
- Intermittent groin pain in the lymph nodes
- Sudden itch in my foreskin which can be satisfied with a light pinch, even through clothing
- Occasional tiny red spots on buttocks and less than 5 bigger spots in as many years on front public area. One tiny one on penis once.
- Stiff neck feeling
- Tingling in hands, forearms, feel and lower legs.
- Shooting pains in groin/legs/fingers/toes.

In 6 years I have undergone the following: 30 days course of doxycycline (no effect), 30 day course of acyclovir (no effect). 

For a long time the worst aspect of the whole thing is the testicular/groin pain. Without that it is manageable. This comes and goes.

I have had lots of STI tests which all came back negative. I did a Herpes blood test for antibodies and that was positive for HSV-1 but that doesn't reveal much as my wife has cold sores anyway (I never get mouth cold sores even though she regularly does and has for years).

What I never see on here is a solution to anyone's problems that actually works. There are success stories in telling partners etc. but I've yet to see a medication that works which everyone raves about.