Seriously very down down down need help

[Peacepleez]

Recently diagnosed. Tremendous neuropathy with pain shooting down 2 feet, burning genitals, severe back pain, and tingling of fingers.  Constant and unremitting.   Can't seem to concentrate on anything else besides the symptoms and disease. Faking my way through life. Not sure I can keep this going.  Have others going through similar symptoms? When do they abate?  I wake up everyday wondering why this is not improving.  HELP!

[justanothersufferer]

Yea I was in a lot of pain when I was first diagnosed. It pretty much lasted 3 months, and for a large part  of those 3 months i was taking anti inflammatories to get me through the toughest of times. But it slowly got better. I use to wear briefs but they killed my groin area so I had to switch to boxers. I have no idea why things became so sensitive with briefs... but it did. Just in case that helps you.

FYI I've had HSV-2 for 2 years, I finished up an outbreak last week and still have lower back pain, it slowly subsides now but nowhere close to what it was with my first OB. I seriously contemplated suicide then. You'll eventually say to yourself, what the hell was I thinking. So take all of our words, it gets easier as time goes on.

[Peacepleez]

 I haven't really gotten any blisters from the initial outbreak except when it first started. It's the pain and burning that is severe. It's been six months now. Don't know how I'm going to feel when I'm going to wake up. Always hope it's going to subside, but it just keeps rearing its ugly head in different ways.  I would be fine if I had the disease with fewer symptoms. It's just the unpredictability and constant pain which is impossible to deal with. Help me. Will this get better. Is this HSV neuropathy? Why do so other few people describe this. 

[Peacepleez]

 I wouldn't wish this on my worst enemy. Just never knew the symptoms would be constant and changing. One day the tip of my penis hurts excruciatingly. No lesions. The next day this is gone and I feel tingling and burning all the way to the soles of my feet  with severe back pain. Don't think I can go on like this. Have seen multiple doctors. On anti-inflammatories.  Is this typical? I just want to know how others have coped. I'm not trying to complain too much. 

[Peacepleez]

It's been SIX months of this.  Just want to see a light at the end of the tunnel.  Really appreciate other people's experiences.  I understand herpes affects people differently, but boy was I ignorant about this supposed mild "skin" disease.  Thoughts from others appreciated!

[SureWhyNot]

I have and will always treat my gHSV2 with an Holistic approach. I too am in a situation where after 25yrs of only having hit and miss OB's, I have been having long periods of prodrome including stabbing pain in left foot and sunburn feeling under skin. Never had that before with OB's. I now have a chemical imbalance, probably genetic, so now my body is not doing well with the HSV. I have discovered that the HSV symptoms show themselves because of other things. I had a low grade uti without obvious symptoms but I had a lot of HSV prodrome and OB's. Once I treated the uti everything related to HSV disappeared. HSV is what we think of as the root cause but for me it is a symptom brought on by the real cause, another infection or imbalance in my system. In my case Histamine Intolerance. This sucks bigger than HSV.

The food I eat affects the HSV and prodrome. Have you considered doing an elimination diet to get your body cleared of toxins then slowly introduce new foods one at a time to see if you react to foods? 

 

[Peacepleez]

I'll do anything to feel better.  Before this was very healthy.  I really love the positive opinions and thoughts.

[Peacepleez]

Is HSV neuropathy/neuralgia real and how many suffer and how to treat when antivirals aren't making a dent?

[SureWhyNot]

You can look up what would be most appropriate for you as there are several elimination diets. I followed my ND's advice. I did 3 weeks of fruits, vegetables and brown rice ONLY. That means only water beyond that. I did sneak in Olive oil to roast veggies in because I consider that a fruit, olives! I have a long post "Why I Choose Holistic Medicine" that chronicles my ND visits and his findings and recommendations along the way to get to the root of my problem. (put holistic into top search and it pops up) Mine seems to be genetic and can't dodge that one!!! It took a trained professional 3 yrs to get to the root of that one because I had let it go so long before I returned to him it did a lot of damage to my system. Part of my physical problem affected my mental state. 

A wise man said it best..."Everything grows together, because you're all one piece". Mr. Fred Rogers.

[Peacepleez]

I already live a very holistic and natural life and still suffering!  Have you followed the threads on therapeutic vaccines?

[SureWhyNot]

I actually have little interest in the vaccines for now. I want to get to the root of my chemistry and let my body do the work until I know the vaccine is safe for me. I am too off balanced to put anything else in as it seems my problem triggers the HSV.

I too was living pretty holistic other than my enjoyment of European Beer and Canadian Herbs. I do not eat sugar or processed foods. I do understand that everything that is not protein is sugar in the body. I had no idea my body can no longer tolerate gluten and now fruits and vegetables that should be healthy for me. The body changes!

[PurpleandGray]

Hey SureWhyNot what were your symptoms when you realized you were bothered by Histamines? I found that Benedryal is the only thing that gives me relief. I'm wondering if my problem could be due to Histamines as well. Thanks so much 

[SureWhyNot]

I was in hell because I was getting constant sacral OB's from food. I had never had prodrome in 26yrs then everything changed. I had horrible stomach and bowels, I gained weight no matter how well I ate. My hair went limp and my skin was dry and itchy. I aged and felt like crap. Not my usual happy and cheery, depressed and fearful. No fun!!

After that delightful description of self I should add, I was able to reverse these symptoms with diligence and food restrictions. 

Edited December 16, 2016 by SureWhyNot

[Peacepleez]

what do you mean by sacral outbreaks?  did your skin breakout or just pain?  i'm just experiencing severe pain!

[SureWhyNot]

I get typical OB's but not on my genitals, they appear roughly 2" left of my tailbone on my butt and can spread a great deal if left alone. They are much more painful and intense than a genital OB.

I should add that my family dr declared them shingles because I am older. My ND pointed out my body is reacting to something that allows the HSV2 to rear its ugly head.

Edited December 16, 2016 by SureWhyNot

[LilyMae]

Hi @Peacepleez. I've had h for a really long time and never had any neuropathy until last year out of the blue. It lasted somewhere around 4 months. I did a little research about the neuropathy then. 

I took tons of supplements. Especially things that help calm the nervous system. St John's Wort, lemon balm, peppermint tea, kava kava, passion flower herb. Also a good probiotic might help. Most of the serotonin in our bodies is stored in the gut and it's release is heavily impacted by our intestinal flora. 

An acupuncturist might do some good too. They can treat your liver if that's not functioning well and removing all the toxins it's supposed to. You might be experiencing some sciatica with the leg pain they could help with. 

Guided meditations helped me a lot. There are tons on YouTube. Jason Stephenson has some really good ones. There's one called Peace Island I like.

Hope you feel better soon. 

[LilyMae]

Oh. And I quit eating oats, nuts, seeds and chocolate. That seemed too help me. I only really missed then for the first few months. Now the only thing out of them I think about sometimes is cashews.

[SureWhyNot]

2 minutes ago, LilyMae said:

Also a good probiotic might help. Most of the serotonin in our bodies is stored in the gut and it's release is heavily impacted by our intestinal flora. 

Yes, drs are finally relating the gut to how the rest of our body is working. Now that it has a fancy name they are starting to look. 

[Peacepleez]

thx so much for the advice

 

[SureWhyNot]

I found almost instant relief from all prodrome and stopped an OB in its tracks when my ND gave me Uva Ursi for a uti I had no idea was a problem. I see some of my symptoms are coming back so when I see him next week I will ask to be tested for the Uva Ursi. I just looked it up and it is also a treatment used for HSV, bacteria and diarreha.  Perhaps that is why it worked so well for me, it provided many aspects of healing.

[PurpleandGray]

Thank you guys so much for the help! Are ND's pricey to visit? I'm just praying I feel better soon. I'm 14 weeks in and feel different awful symptoms every day. Did all of you test positive through igg blood test? My 13 weeks BT still came back negative! The doctor said I could still have it but it's rare why I wouldn't be building antibodies. The man I was with just admitted to having it to me yesterday so more now then ever I'm thinking I have it. Does anyone know why my body wouldn't be making antibodies? 

[Disc0rdant]

Normally 80+% have antibodies by week 14.  I tested after that and have no concerns at all.  By 16 wks, 95-98% have antibodies.  I had a fungal deal in early June and last tested early Nov.

I would say you are likely good at 14 wks.  You could test 1st of yr I guess, then after 6 mos.

I keep testing cause I am paranoid.  No other reason...  I have zero symptoms.  

[Peacepleez]

Advice appreciated.  Looking for others stories on newly diagnosed!  How bad?

[Peacepleez]

Discordant, I have all the symptoms and exposure so very very worried:(

[Terrell]

8 hours ago, Peacepleez said:

Recently diagnosed. Tremendous neuropathy with pain shooting down 2 feet, burning genitals, severe back pain, and tingling of fingers.  Constant and unremitting.   Can't seem to concentrate on anything else besides the symptoms and disease. Faking my way through life. Not sure I can keep this going.  Have others going through similar symptoms? When do they abate?  I wake up everyday wondering why this is not improving.  HELP!

Give your system time to fight back and take control