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James39

Post-herpetic Neuralgia

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Fitzjust

@James39 maybe try Zostavax, its vaccine  for shingles but many claim alot of relief from symptoms for HSV1 and HSV2, also my doctor said alot of his Shingles patients got relief from nerve pain by taking this vaccine. Ive had it, so far so good.

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James39

Many thanks indeed for the information.  I was interested in trying Zostavax during the past year or two and saw some conflicting information about it.  Since you've said it's helped you, I'm going to try to obtain it here locally.  I do not know if it's available in this region.

What I found a year or two ago, is that there was initially a French study into the use of Zostavax for chronic HSV1 and HSV2.  The study seemed very positive but then I saw other reports that indicated the results could not be repeated.  Clearly there's more to this than the negative articles suggested.

My nerve symptoms have been so bad lately that I tried to contact Dr. William Halford.  I wanted to find out if it was still possible to participate in his research.  Sadly, despite several messages and a telephone call to his office, I just cannot get him to reply.  Aside from the difficulties with my own symptoms, not being able to even get him to respond with just a message back, has been very depressing.  It's almost been causing me to give up hope.  I do not know what the future of his therapeutic vaccine is at the moment, but I think some of us were wishing it would happen.

 

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James39
On 15/06/2016 at 7:01 PM, afra1d said:

Anyway, to get to the point of my post, I'd love to see this list of yours with treatments you've tried and want to try. Also, I'd like you to look into another possible treatment which you may not have heard of: bupropion. It is a mild-antidepressant and is apparently very effective at treating and preventing viral infections (hopefully also ameliorating recurrences). Check out the patent I found that clearly states its use for treating herpes viruses and even includes some of the anecdotal evidence that led to the patent:

http://www.google.com/patents/US6512011

Let me know what you think and let me know if you're willing to share your magical list! :)

I'm sorry I haven't replied to you until now, especially since you'd asked me about my list of things I wanted to review.  I've had a difficult few weeks with nerve pain and other symptoms and a lot of work to get done also.  Consequently I haven't logged-in to this site until this evening.

The outstanding items I haven't yet had chance to fully review and consider, include the following.  Not all of these are relevant to me, since my nerve dysfunction is systemic.  They may be useful for those who wish to treat chronic lesions however.

- Chlorprothixene http://www.ncbi.nlm.nih.gov/pubmed/4065157
- Monolaurin
(lauric acid)
- Ultrasound therapy https://drmichaelstevenlee.wordpress.com/2012/06/10/shingles-aka-herpes-zoster
- Zinc sulfate http://www.simplexlove.com/herpes-cure
- Naltrexone https://www.drgonzalezmd.com/low-dose-naltrexone-for-fewer-herpes-outbreaks/
- Immunoglobulin therapy
- L-Acetylcarnitine
- Bowen Treatments and Lymphatic drainage, kindly mentioned by 'SureWhyNot'

Other supplements that do work for me, include Red Reishi mushroom powder or capsules, chaparral extract, bee propolis and quercetin.  These supplements reliably reduce PHN for me.

I have also been using colostrum during the past two or three weeks and I have been getting helpful results from time to time.  The results are not always predictable and repeatable however, but I have been able to demonstrate that the antibodies found in colostrum, will sometimes have a positive effect on suppressing viral activity.  It will also improve nerve sensation for me.  I have proved this repeatedly and reliably.

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SureWhyNot

James39 my ND mentioned a couple things we are working on for me. I know this is me not you, I am only mentioning them in case you see yourself in there. I do realize self diagnosis is a dangerous thing and certainly not reliable. I only use things like this as a reference to bring up possibilities to my practitioners to rule out. The smaller the list the easier to get to the source. 

Sibo,  Small Intestinal Bacterial Overgrowth, more related to joint pain not nerve pain

Histamine Intolerance. Missing enzyme DAO http://alisonvickery.com.au/histamine-nervous-system/

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Fitzjust

@James39 yes you are right, the french study used chicken pox vaccine, zostevax is the chicken pox vaccine but 14 times more powerful, i know a few friend who have had it, its not a cure. I used to get nerve pain all the time for years and years, throbbing pain like a ob coming on but no OB. I had the vaccine, my nerve pain all but gone.

Its worth a try, nothing to lose, should last up to 5 years, its recommended for those over 50 but has no problems at any age.

ZOSTAVAX is a live attenuated virus vaccine, which is exactly what Dr Halford says is the way to go for a cure. 

I showed the exact same study from Paris hospital and my doctor went "wow, that makes sense, they are from same family" He has since been using it for HSV patients. And he mentioned after shingles some of his patients have bad nerve damage and the vaccine has helped alot!!!

Im sure you can get in indonesia, i got it here in KL easily, and much cheaper here $100USD, singapore is triple the price.

 

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James39
8 hours ago, SureWhyNot said:

Sibo,  Small Intestinal Bacterial Overgrowth, more related to joint pain not nerve pain

Histamine Intolerance. Missing enzyme DAO http://alisonvickery.com.au/histamine-nervous-system/

Thank you for the reply, SureWhyNot.  Actually, I have re-read your post from June 15th and I follow it better now.  When I first saw your reply on 15th, I didn't quite understand it and I took it to mean that you had discovered that your symptoms were not HSV-related.  However, I can see now that you meant the uristatin had helped your prodrome symptoms.  Looking at uristatin's ingredients, I notice that it contains echinacea and goldenseal, both of which possess anti-viral properties.  I actually took echinacea some years ago and it happened to be one of the best periods, in terms of my HSV symptoms.  I stopped taking it because of its exhorbitant price in Thailand.  Of course, now we have access to suppliers like iHerb.

So, uristatin by Thorne Research is also on my list of additional things to try now. http://www.iherb.com/Thorne-Research-Uristatin-60-Veggie-Caps/18594

My list that I sent to Afraid yesterday, needs to have the uristatin added also.

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SillyNoob

Hi James, since contracting (genital) hsv-2 I've experience daily PHN, usually not when I wake up, but a little while after eating breakfast. I've narrowed it down to blood-sugar and the resultant insulin response. (Although I'm not a diabetic) Initially my PHN was unbearably, but now, If I keep my blood sugar low, PHN is much more bearable.

If however, I eat bread, sugar, rice, (or any other complex/simple carb) the PHN starts within an hour or 2. I would recommend a high protein, high fat, low carb diet. As long as my carb intake is low (or none) my PHN is bearable & less distracting.

Try to eliminate wheat, sugar, & rice from your diet. My carb intake is primarily from non-starchy veggies. (I try to avoid fruits due to the fructose)

Also, what helps me is supplementing with aloe vera juice (helps lower blood sugar). I feel the effects of aloe vera within 5-10 mins of taking it. (a shot of aloe vera juice is enough).

Edited by SillyNoob

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Sunnyday3

Is anyone with herpetic neuralgia still on here? Wanted to hear your stories about therapy... Chinese medicine? What is ozone therapy and lymphatic drainage? I have constant pain and stmptoms that I attribute 100% to H, but no medical professionals do! 

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SnowAngel

Hi Sunnyday I have started Amitriplyn for my pain.  I also take Lysine, Magnesium, Olive Leaf Extract, Vit D and Vit C. Do you have HSV 1 or 2. How long have you had it and did the pain start right away or did it take some time? Some on here say they don't get pain until about 10 years later. It's so frustrating but the doctors won't believe it's due to HSV :( you might have to be treated for something else like Fibromyalgia. 

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Sunnyday3

Hi! Yes I think I've had h for 20 years! I've only started getting nerve pain over last 5 years. Think my immune system took s knock when pregnant with my second daughter. I have both,  hardly any sores but the pain is the worst, dull ache in stomach (uterus) lower back back of neck, bone joint pain fatigue headaches tinnitus etc etc. 

Do youbthink pain better due to amitriptmine or the natural meds? Or all the above? 

Thsnks fir your message :-)

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Just want to move on.

I get hot prickly feeling skin on my face daily. Red swollen skin, site of entry of virus I would guess, on shaft of penis constantly. Red spots that come and go on the lower part of my legs. No classic outbreaks. The most dehibilitating effect is the constant need to urinate. Hasn't really stopped since day one (4 months ago now) Only helped by valtrex daily. I could probably deal with this whole thing if it wasn't for the need to pee all the time! I have Addison's disease and have been taking synthetic cortisone for the last 12 years, I think this has weakened my immune system for sure. Looking for any advice with supplements that will increase immune response. 

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WilsoInAus

@Just want to move on. let's not grasp the rough end of the pineapple here! None of these symptoms sound like herpes but are often experienced by people with and without herpes. Further, you have no diagnosis of herpes so this is an example whereby such symptoms are caused by other agents and need to be investigated with that mindset.

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Just want to move on.

Seriously?? Then please enlighten me, because 8 doctors have been unable to do just that.

I would also add that I had all the common symptoms to start with, swollen lymph nodes, flu symptoms, achy buttocks legs. All started with burning sensation on shaft. Felt like utter crap for a week or so at the beginning of it all. Burning areas on my skin with no sign of rash at the top of my legs. Been cleared for all bacterial infections, prostante fine, all std checks negative, no white bloods cells in urine suggesting zero chance uti. Only thing that helps with symptoms is anti virals, basically without them the sypmtoms especially around the mouth increase hugely. 

The only thing I can think of is that I'm not making the antibodies which, if I'm right, would coincide with a weakened immune system.

@WilsoInAus if you can suggest a reasonable alternative I'm open to suggestions.

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WilsoInAus

Yes absolutely seriously. Why would herpes be some magic default condition when it is more diagnosable than many other ailments?

If you didn't make antibodies you'd have oodles and oodles of lesions to swab. Herpes makes no sense, it doesn't come off the grassy knoll.

What tests for micoplasma have these vast array of doctors undertaken?

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Lisajd

I have googled post herpetic neuralgia and have seen no information that says its herpes related.  

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TCBH

Well as we all know the HSV tests are not infallible.  I too had some of the same symptoms....swollen groin lymph nodes, burning sensation, neuralgia in the left leg which coincided with the pain in the genital region.  It took a couple of months but the Igg test finally came back positive for HSV-1. Come to find out my boyfriend had HSV-1 and did not tell me.  He had it since a child but felt he wasn't contagious unless he had a lesion (cold sore) so he didn't disclose to me even though I asked if he had any known STDs.   Unlucky for me.  It was amazing how the symptoms came on so quickly after being with him.  It took 6 months for the neuralgia to subside to about 5% of what it was.  However, I still deal with constant burning sensation in the genital region and the 5% in the legs is more of a numb feeling.  Most of us know our bodies better than any one else to include doctors.  Be true to yourself @Just want to move on.

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Quest

@Mackie82 we need to work on your neuralgia?!?. Please respond. We will get a plan for ya, this won't be permanent. How are your B-12 levels to start? :squeeze:Do you have someone to go to the store or order online for you?

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Mackie82

Thank you very much but I have taken b - 12 injections. My pain is above vitamins and supplements the completed peripheral nerve is damaged this is official diagnosed. I may consider something like nerve blocking / freezing or anything like that at least to get a break. This has been going for close to 2 years now. 24/7 non stop. I have done full spine MRI and it’s all clearl so what’s causing the pain is the HSV which already damaged my nerves. Thanks 

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Jay2255
On 6/6/2016 at 2:41 AM, James39 said:

Just a few lines to introduce myself.  I decided on the heading because unfortunately the defining characteristic of my condition has been PHN – Post Herpetic Neuralgia, which I've had since shortly after being exposed to the virus and it is with me every hour during which I'm awake.  The range of symptoms makes incredible reading at times, since the vast effect that it has had on my nervous system has caused so many secondary complications.  Principally, it has caused sacral radiculopathy, affecting my ability to stand, to balance properly and to raise my legs, furthermore mild incontinence.  I have lost power in my pelvic muscles, as a result of the nerve dysfunction.  It has also caused genital numbness, leading to other problems, as you might imagine.  It also causes an almost constant stabbing pain, genitally and often when symptoms are particularly bad, a pressing or knawing pain, and a burning sensation.  I have treated myself mostly, because medical care here in Thailand is very limited and is focussed almost entirely on providing expensive and profitable medical procedures since they generate the most revenue.  Recently I have been treating myself with herbal therapies, the most successful of which has been red reishi mushroom and propolis.  I hope that some of my findings with regard to herbal therapies may be of help to others, especially since my case has been such a difficult one to treat.  I continue to live in hope for a therapeutic vaccine solution.  James.

How are you doing these days?

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Jay2255
On 2/7/2017 at 3:49 AM, Just want to move on. said:

Seriously?? Then please enlighten me, because 8 doctors have been unable to do just that.

I would also add that I had all the common symptoms to start with, swollen lymph nodes, flu symptoms, achy buttocks legs. All started with burning sensation on shaft. Felt like utter crap for a week or so at the beginning of it all. Burning areas on my skin with no sign of rash at the top of my legs. Been cleared for all bacterial infections, prostante fine, all std checks negative, no white bloods cells in urine suggesting zero chance uti. Only thing that helps with symptoms is anti virals, basically without them the sypmtoms especially around the mouth increase hugely. 

The only thing I can think of is that I'm not making the antibodies which, if I'm right, would coincide with a weakened immune system.

@WilsoInAus if you can suggest a reasonable alternative I'm open to suggestions.

Have you since been diagnosed? As I have similar pins and needles in the face (despite some on here saying that’s nothing to do with herpes, as you were told, even though I’ve never had it before). I’ve been in hell for 4 weeks, only slightly letting up now. I’m guessing my immune system could not fight it.

i have tingling all over my body. Are you on AV,s?

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Just want to move on.

Unfortunately still no diagnosis for me. The only thing I can say with great certainty is that the docs have zero clue. The burning etc has gone right down, although I still get the odd rash on my lips that never quite develops to a full fever blister. Funnily enough it was only after I had the measels vaccine that I felt any real change but hey, according to the docs and a narrow minded wannabe doctor on here, that would only be coincidence. 

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blurneworder
On 12/28/2017 at 10:29 AM, Just want to move on. said:

Unfortunately still no diagnosis for me. The only thing I can say with great certainty is that the docs have zero clue. The burning etc has gone right down, although I still get the odd rash on my lips that never quite develops to a full fever blister. Funnily enough it was only after I had the measels vaccine that I felt any real change but hey, according to the docs and a narrow minded wannabe doctor on here, that would only be coincidence. 

Currently dealing with a rash on either side of my lips. Second time in two months this has happened. It comes on strong and burns like hell, but no blisters. It usually lasts for a couple days.

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