tooold

Planned Parenthood or a Urologist. I found the two ID docs I went to were useless and expensive. Their offices were littered with posters advertising HIV AND Hepatitis drugs. Of course, I was in a state where most doctors are pathetic, Nevada so you may have a different experience, but I doubt it.

I was just curious to see what my igg number would be after all this time plus these red bumps are freaking me out. I keep thinking as long as they are around my brain is endanger of increasing lesion activity. I have thought it may be some type of weird acne. Not necessarily due to my diet, but more so from not working out like I used to or from health stress. I'm going to retake the WB or take another H test I have heard of in a couple of months to finally put this to bed.

Yes, and everyone needs to be vigilant and do their best to keep these diseases dormant.

They are painful and occasionally itch. They stick around for weeks. I did test positive for EBV. IGG 177 so supposedly old infections, although I am starting to question this whole IGG versus IGM thing as well. I know most people test positive for EBV, but I never remember having mono. I asked my parents and they agreed that I never had mono even when I was a baby. I guess I am a good case in point that everyone should be tested for all Herpes and even Lymes. (I am currently going through special testing for Lymes as well since one band on a basic Western Blot came back positive). If you do test positive for any of these, it would behoove you to be vigilant about not exacerbating these conditions when you get older. Meaning, eat right, take the proper supplements, excercise and most importantly find yourself a good naturopathic doctor. I have learned so much from my naturopath. I wish I would have been seeing her a year ago!

I'm just trying to get to the bottom of my issues. I constantly get red bumps on my butt, back and legs that itch and are painful (I have visited planned parenthood and a dermatologist and both hemmed and hawed and said these are not herpes). I have never had these bumps until my issues started. My calves constantly twitch and my legs have a dull constant ache especially when I am active, meaning a short walk or jog. This is only a few of my symptoms that manifested in June, July, and August. This all started after I dated someone that had herpes, but come to find out she does not know if she has hsv1 or hsv2 and does not plan to get further testing! My symptoms manifested to the point that I was referred to a neurologist who did a number of tests including a brain MRI. The brain MRI came back abnormal with several white matter lesions found. A lot of my research has shown that one theory of how MS develops is via the body fighting a virus causing the immune system to go haywire. I saw a neurologist for a second opinion who is in the process of ruling in or ruling out MS. This neurologist actually understands how virus' can contribute to autoimmune diseases. She has brought up that some MS drugs can not be used if the body is continually fighting an infection and you must first get to the bottom of what is causing the body's immune response. This is why I am concerned about these H tests and their validity. I think this is a conundrum and I doubt I am the first to cross this bridge.

So I took another HSV1 and HSV2 blood test. I had tested negative for HSV2 on the Western Blot, but positive HSV1. I was just curious what labcorp would tell me after a few months of being off anti-virals. The numbers came back as : HSV1 17.0 and HSV2 1.68. Does this mean I will continue to test false positive forever HSV2 on this type of test? 1.68 is the highest I have ever tested. The last test I was at 1.2 and prior to that I was 1.36. @wcsdancer2010 @2legit2quit

Yes, I may have to go see a good rheumatologist at some point. I agree this may be an autoimmune issue. I haven't taken any steroids, the only prescription meds I have taken were antivirals. I think you said you haven't spoken to the guy that was having the weird hsv1 issues in a while, but if you do run into him i'd be curious to hear how he is doing.

I do have h, I tested positive for hsv1. I believe my symptoms are due to genital hsv1. While they don't present in "typical" fashion I definitely have something going on. I posted this because I was having a conversation with someone today about how people newly diagnosed are very active in the forums and then they are gone. The person I was speaking to posed that maybe they get better and want to put this behind them. This is definitely not directed at you, you are one of the amazing ones on this forum. As I have told you before, you have helped me tremendously. It's sad to hear that people can be so mean on forums. It makes me worried that is the reason some people suddenly disappear from the forums.

I've noticed someing in some of the forums I have been in. A lot of people newly diagnosed with H whether it be hsv1 or hsv2 and have strange neurological issues such as twitching, tingling and odd pain seem to be very active in the forums when they first experience their symptoms. They post a lot because they are very worried about what is happening to their normally healthy body and rightfully so. What I then notice is that they sometimes just disappear from the forum. My question is to some of the senior members of this forum, is this disappearance because they get better and their body has adjusted to the virus, did they just give up, or have they been run off the forum because they are considered a mutant? Or could it be something else? Of course, I'm hoping it is the first one and there is hope for me. I appreciate anyone in advance for taking a look at my post.

@wcsdancer2010 Hi, yes, I recently went to a naturopath who ran all kinds of blood tests. She did find that I was vitamin b deficient, very low vitamin d, testosterone and a few other things. I also need to stay away from dairy and some other products. She has me on a number of tinctures, vitamins, and minerals. Very large amount of Vitamin D, some B, calcium, magnesium, and probiotics. I have an appointment with a Neuro in CA for a 2nd opinion on Monday. Hopefully that will rule out any brain issues and then I can focus on my immune system. I appreciate your responses. Thank you.

It's the twitching in the calves and the weird pain I get in my inner thighs after I go for a jog that is freaking me out. The red bumps I can live with.

@2legit2quit About 12-15 years ago I had a breakout on and around my lips. My Dr visually diagnosed it as oral h. 2 years later I had a similar outbreak then nothing until about 9 months ago. This time it was just a red rash around mouth. I saw a derm and she said it was not herpes but perioral dermatitis. Even if I had hsv1 for a long time I still could have picked up a different strain from the person I last dated? I recently asked her what type she has. She said she didn't know and just assumed it was hsv2. If I only knew then what I know now.

I guess I will need to start calling around to find a Dr. that will swab no matter what they see visually. I did call Westover Heights last week and the NP I spoke to said based on my Western Blot results there was no need for me to swab. She also said to my surprise that if their are no open weeping lesions and they are just bumps swabbing would not work. I thought PCR swabs can pick up the H DNA no matter what is present? I went to an ID Dr. Close to when I was having some weird symptoms and tested at 18 igg hsv1 and 1.3 hsv2. He recommended I go on 500mg a day valcyclovir. @wcsdancer2010

@2legit2quite @whitedaisies Hi, I agree. I've probably had red bumps like these on my body my entire life and now I am just being hypersensitive. Hope you are doing well.

@white daisies I called the UW Virology dept. They said the meds wash out of your system in 1 week so being off the 2 weeks would be fine. They also said that 7 months out from exposure also is plenty of time for a healthy person to build antibodies. I guess my current symptoms are all in my head or it is hsv1 or something else.

I was on and off them for approximately 4.5 months prior to taking the Western Blot. This was never brought up in my phone consult. I simply told her in my medical history that I had been on and off them for so many months, but that I had been off them for two weeks prior to o our phone conversation. I'm sure she would have advised otherwise if she felt I needed to be off them longer. Hmmm. Maybe someone else can chime in?

That's why this process is so confusing. I had my phone consult with Terri Warren. I went over my medical history and what meds I was taking. She did not say anything about being off the antiviral drugs for 3 months. Rumor is there is a new blood test going to be available in March. I either need to let this go or I will think about taking that test. I appreciate your quick response. Thank you.

7 months post exposure w person I was dating who said they had herpes I took the Western Blot. I had been off antivirals for 2 weeks prior to blood draw. Test results were positive for antibodies hsv1 and negative hsv2. Currently I get painful red bumps on my butt, lower back, and legs. I have twitching in both calves. Occasional tingling in upper legs, butt pain when sitting, and a nagging intermittent ache in my right groin. I have been to planned parenthood and a dermatologist, both saying the bumps don't look like herpes, but neither would do a swab. My question is, is this hsv1 causing these red bumps and symptoms or is there a possibility the Western Blot is a false negative? I think I read somewhere that the WB is only 80% accurate even after 7 months when the person is already hsv1 positive.

Hi 2Legit2quit. I'm back. I read this post about LDN. I am still having problems with tingling and twitching in my legs. The twitching in my calves gets really intense sometimes and leads to this weird pain in both legs a few hours after I go for a run or workout. It freaks me out. The red bumps on my butt persist, but I am always told these are not herpes by med professionals and they won't swab. How I was negative hsv2 Western Blot is still baffling. Either I do have MS or this is some strange hsv1 situation, I don't know. I also am seeing a naturopath who has put me on a bunch of vitamins and tinctures, but I'm not sure this is helping. I am seeing a neuro in CA to get a 2nd opinion about MS. About LDN, do you know of any doctors in the Southwestern US prescribing this treatment? Hope you are doing better.

Thank you. I spoke a representative at PP today and they confirmed what you have said. I will wait for my Western Blot results and then if these red bumps keep appearing I will make an appt with PP to get them swabbed. Thank you.

Is there anyway I can attach pictures or send someone some pictures to get your take on what these red dots are on my behind, legs and back?

I agree. Nothing in this town I live in is normal. :(

I wonder if I still have to do the consult if I already did the consult with Terri to take the Western Blot. I will give them a call. Thank you.

So I am coming to terms that my symptoms are H related. I should have my Western Blot results sometime next week to confirm that I have both HSV1 and HSV2. I thought things were simmering down and I had come off the meds for the past month, but yesterday I had severe twitching in my calves (this is usually after I go for a jog) and tingling in both legs. I then noticed a few red bumps on my back, a few on my right thigh region, and 3 or 4 on my right buttock region. All very itchy. I also had a lot of energy. I think this was anxiety from what was happening to my body again. I picked up a prescription of Valacyclovir 500mg. I took one this morning and the tingling and twitching calmed down. I believe I should stay on this for the next 3 days 500mg x 2 a day? I will probably then stay on 500mg a day for suppressive therapy until things calm down. Here's the funny thing. When the red bumps showed up, I called a local dermatalogist who was able to see me yesterday morning. He took one look at these bumps and said they were not herpes. I asked him to do a swab and he said it would be a waste of time. Does anyone know where I can go to get a swab no matter what the practitioner thinks? Planned Parenthood?

Thank you.