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James39

Post-herpetic Neuralgia

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James39

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.

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Sabby09

Welcome! I am sorry for your experience with this. Was it caused from oral or genital herpes? I'm glad you found something that has helped it. Best of luck and hopefully soon there will be more treatment options for you. Have you looked into natural treatments for HSV? (Pure oregano oil, lysine, colloidal oil, etc?

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LillianPanos

I have nerve pain too, though not as bad as yours exercise helps me, drink alot of water, and I have a teaspoone of cayenne pepper in 1/2 cup of warm water, they do sell cayenne pills tho the way I do is cheaper and stronger...Hang in there hope this goes away soon

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James39

Thank you for replying to me.  I'm familiar with cayenne but it isn't successful for me.  It is capsicum of course, which acts as a form of anaesthetic.  My condition worsens over time unfortunately and has continued to do so since viral exposure in 2007.  For each incidence of strong viral activity - not necessarily outbreaks, but simply viral activity - the PHN and other dysfunctions worsen considerably.  I have also seen documented cases of herpes simplex which cause deteriorating symptoms with secondary viral activity, contrary to what many suggest.  My nerves have become increasingly damaged over time, such that I have lost nerve function and sensation, in addition to suffering various forms of pain.  Without nerve function, muscle wasting takes place and that has happened in various places, including male parts.  I can sometimes encourage the nerves to work a little better, by taking larger doses of valacyclovir, which obviously acts to suppress virus replication.  Similarly, certain herbal treatments help the nerves, such as the red reishi mushroom, quercetin, PQQ, phosphatidylserine and also chaparral.

I have travelled overseas several times and obtained extensive ozone therapy.  Ozone destroys viral particles.  It worked very well indeed, but like everything I try, it only works for a certain period of time, after which the viral activity overpowers it.  I have also travelled overseas to obtain Rife therapy, a form of electromedicne.  That also worked wonderfully but lasted a week or two.  When I returned home to Thailand from getting ozone therapy overseas, I bought an ozone generator and enlisted a local nurse here privately, to help me perform ozone injections.  Again, this was successful to a point and has helped me, but is by no means a cure.  With my nurse, I also carried out daily vitamin-C infusions and injections of B vitamins.  All the efforts we've made have helped me and I've finally managed to stop taking daily valacyclovir medication.  However, I believe that taking suppressive valacyclovir is unhelpful long term, because the immune system appears to lose its own regulation of the virus, because as soon as I stopped taking the anti-viral, I got an almost immediate outbreak.  Dr. William Halford suggests this also on his blog.  Although I am no longer taking this anti-viral however, the nerve dysfunction and numbness has worsened.

There isn't a lot I haven't studied with this virus and its complications.  I have also self-medicated for the past several years.  We can obtain everything over the counter here.  It has been useless to see MDs any longer, as they offer no effective help and in many cases deny that HSV is more than just a skin condition.  The personal research I've carried out, surpasses what bit of knowledge many of them possess in relation to herpes simplex anyway.  Although the condition has caused me severe depression at times, I often feel uplifted by the opportunity to help others, with the limited help I can provide.  I am hoping that Dr. William Halford can progress his treatment to the point of being able to offer an improvement to sufferers' lives.  I have attempted to contact him several times, but he does not reply.  James

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SureWhyNot

Have you considered acupuncture? I admit I had 4 different acupuncturists until I found a traditionally trained acupuncturist, studied in China for several years. Not all are equal.

I had a large area of burning pain in my abdomen, groin, down inside to back of my leg, after surgery, roughly 15" around. The skin was so sore clothes hurt if touched it yet there was no visible signs of irritation. Surgeon said must have nicked some nerves nothing can be done. Should grow together in time. After a couple months trying to ignore it I mentioned it to my Acupuncturist never thinking he could do anything for me, surgeon said so. After one treatment I noticed it was less painful. After 4 treatments the pain was down to roughly 1" area. By the 5th the pain was gone unless that specific area was pressed upon, never to return. 

I hope you find the answer that makes your life easier as we feel your pain and frustration.

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Seeker1960
5 hours ago, 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.

So sorry to hear of your situation. I too have nerver pain since exposure to GHSV1. Mine is no where nearly as progressed as yours. The Virus has infected your nervousted system and likeep me it seem that youth immune system is attacking itself.

I seem to have developed an autoimmune disease as a result of my infection.

You can try Low Dose Naltrexone. It can modulate the immune system. Search it out it may help. Also you might try the Paleo diet. It cuts all grains out and some others things. The goal to reduce the inflammation and the put the process in to remission. 

I wish you the best. I don't believe that pharmaceuticalshe have the answers. We can treat some of these symptoms by restoring our bodies to balance and cooling out immune response.

All the best , Seeker

 

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James39
8 hours ago, SureWhyNot said:

Have you considered acupuncture? I admit I had 4 different acupuncturists until I found a traditionally trained acupuncturist, studied in China for several years. Not all are equal.

Thank you for the helpful information and especially the words of encouragement.  Yes, I tried acupuncture at a Chinese TCM specialist hospital locally which had been highly recommended.  I didn't obtain any benefit from several weeks of treatment, both electroacupuncture and conventional, but I noted that the acupuncturist was unaware of an acupuncture point in the perineum, that I had previously read about in a textbook.  Since my pain is mostly in the male anatomy, I had hoped that he might find a point which is relevant to treat neuropathic pain in that location.  When I asked him if he could treat the perineum, he declined to do so and communication was difficult for us, because he spoke no English.  Perhaps I should try to persue this again with a different acupuncturist.  Thanks.

Edited by James39

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James39
7 hours ago, Seeker1960 said:

So sorry to hear of your situation. I too have nerver pain since exposure to GHSV1. Mine is no where nearly as progressed as yours. The Virus has infected your nervousted system and likeep me it seem that youth immune system is attacking itself.

I seem to have developed an autoimmune disease as a result of my infection.

You can try Low Dose Naltrexone. It can modulate the immune system. Search it out it may help. Also you might try the Paleo diet. It cuts all grains out and some others things. The goal to reduce the inflammation and the put the process in to remission. 

I wish you the best. I don't believe that pharmaceuticalshe have the answers. We can treat some of these symptoms by restoring our bodies to balance and cooling out immune response.

All the best , Seeker

 

Thank you very much Seeker, I have added the name of naltrexone to my list of possible things to try.  A quick preliminary search a moment ago, seems that it may be helpful.  Yes, I have considered the paleo diet, but hoping that I could avoid it.  I have suspected also, that I have an autoimmune element to my condition and that it may account for why I have chronic inflammation.  As a significant number of other sufferers have pointed out, they have constant red skin over the affected area and many of these sufferers - like me - have GHSV1 rather than GHSV2.  It has to be said, that for several years I did not even know my condition was caused by HSV, so it is possible that my complications are from absence of initial treatment.

Although I think the autoimmune argument is relevant, I also encountered an article which suggests that there are different characteristics between herpes virus strains.  It indicates that there are neuroinvasive strains and neurovirulent strains.  The neuroinvasive strains cause damage and are a potential for encephalitis, whereas the neurovirulent strains' emphasis is on replication, at the cost of neuroinvasion.  The gene ICP34.5, it says, is what is responsible for neurovirulence, but not necessary for neuroinvasion.  I kept this article because some doctors have tried to tell me that herpes is benign and causes only skin lesions.

"The ability of ICP34.5 to facilitate HSV replication in neurons is an important feature for promoting neurovirulence but is not sufficient for promoting neuroinvasion. A neuroinvasive virus is also able to avoid host immune control and travel efficiently through the central nervous system. The presence of >11 PAT repeats (as for KOS79) in the protein appears to be important for neuroinvasive disease potential. Although the lack of PAT repeats in the HSV-2 protein (38) might seem to contradict this statement, HSV-2 is less likely to cause encephalitis than HSV-1 and much more likely to cause meningitis (5, 16) in an immunocompetent individual and is less likely to induce brain lesion formation in a mouse model (42). HSV-2 is also more sensitive to interferon alpha and beta (29, 30). " - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC149531/

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SureWhyNot
2 hours ago, James39 said:

When I asked him if he could treat the perineum, he declined to do so and communication was difficult for us, because he spoke no English. 

Yes I was lucky, mine spoke 12 languages so no communication problems, other than I felt like a mere mortal. The needle did go into the center of the pain area and I thought that would be a nightmare but not so much. He moved far away, sadness! Now I have a brilliant ND.

You are obviously very knowledgeable regarding HSV and willing to pursue every avenue to regain your health. I employ every safe modality towards my health as I also do not believe pharma has an answer for this. The herbal treatment I am receiving now for a bladder/uti infection is working on my recurrent Sacral OB's, my newly developed condition as my OB's seem to be triggered by certain foods. I can only eat a handful of different foods right now. Something new after 20yrs of successfully keeping it in its place with only minor inconveniences.

My wish for you is to find the help you need in any safe modality.

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Seeker1960

@james39

I read that article and I am not versed on the Medical and scientific terminology I still understand the summary of the article. It is very concerning because I believe that I have a Nuero invasive strain of HSV1. In five 6 months since infection I have experienced many nuerological symptoms. I am afraid that it has caused some damage in my brain already because my thinking seem much slower than prior to infection. I felt a lot of nerve activity also in the previous months and my CBC is abnormal indicating something in my immune system is reacting and has triggered an autoimmune response.

I just don't know if the virus or the immune response is causing the problems and which to way to go about dealing with each. I have tried Valtrex but I'm not sure it would work to slow this virus down since Valtrex deals with nueroreplication.

I feel like if my body cannot get this virus under control and from the article it may not be able to and  I will be in for more serious progression and consequences  of this disease. 

How long have you been infected with HSV that the symptoms have progressed to this point?

I don't have constant Nueropathy pain. I have irritation in my scrotum and perineum in the form of alloydynia. I have had two prudendal nerve blocks and since the second one the alloydynia has diminished some. You may need to look at the posibbility of prudendal nerve entrapment due to the virus. I read one person who got relief through surgery that released the entrap ment and removed scar tissue. 

I don't know what is going to be my final outcome. The symptoms have me worried because 99% of the Doctors don't have a clue how to treat someone with something like this. 

Please share as much as you can on the herbal treatments.

Seeker

 

 

 

 

Edited by Seeker1960

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James39
On 06/06/2016 at 10:48 AM, SureWhyNot said:

Yes I was lucky, mine spoke 12 languages so no communication problems, other than I felt like a mere mortal. The needle did go into the center of the pain area and I thought that would be a nightmare but not so much. He moved far away, sadness! Now I have a brilliant ND.

You are obviously very knowledgeable regarding HSV and willing to pursue every avenue to regain your health....

Many thanks again for the reply.  Wow, 12 languages.  It has taken me twelve years to learn Thai.  One of the treatments I saw for PHN was the acupuncture method called "Surrounding the Dragon".  In case anyone else may benefit from this, it is described at http://www.encognitive.com/node/5426  Alas, in my case, my pain is very deep and aching, not so much dermatalogical in nature.

You were fortunate to find someone who got it absolutely right with your treatment.  I wonder if this kind of problem, such as you described in your first reply, whereby the skin was sensitive and burning, is largely a question of stopping the pain for a sufficiently long period time for the pain to be forgotten.  I sometimes read about pain lasting long after the original cause has been resolved.  I also had very unpleasant burning and itching feelings around the the skin of the thighs, groin and male parts until this year, until I began self-treatment with Tegretol (Carbamazepine).  I have now reduced the dosage to almost zero and the dermatological pain has stayed away.  I found this treatment on a paid-for article from JAMA.  Unfortunately it does not resolve the worst pain I suffer, and that is the internal aching, which is a deep, pressing, structural pain.  Of course, it does not resolve numbness either.

With regard to my treatment avenues, yes I have tried many possible solutions and purchased many devices which held promise, together with researching my own treatments and going after them.  It would be wrong of me to describe it as a hobby and rather flippant to do so, but sometimes it feels that way, perhaps from the excitement of getting something new to try.  There are also many sellers of devices and equipment out there on the web who are more than willing to take our money for things which only really offer a very marginal therapeutic benefit, if at all.  Nevertheless, I've tried many of them!

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James39
On 06/06/2016 at 0:37 PM, Seeker1960 said:

I read that article and I am not versed on the Medical and scientific terminology I still understand the summary of the article. It is very concerning because I believe that I have a Nuero invasive strain of HSV1.
.
.
I don't know what is going to be my final outcome. The symptoms have me worried because 99% of the Doctors don't have a clue how to treat someone with something like this. 

Please share as much as you can on the herbal treatments.

 

Hi Seeker, please try not be disheartened about your symptoms.  In my experience, the virus is quite easily attenuated with the right treatments, be they herbal, nutritional, or otherwise.  I even saw great success with yoga in the past, reducing PHN substantially.  I have also found that it is more effective to change the cycle of herbs and that to use the same remedy for prolonged periods, does not appear to maintain such control over symptoms.  I will drop you a message with a list of what works for me.  The list is extensive and will otherwise serve to complicate this thread even more.  I do not believe valacycovir, acyclovir etc. are good pharmaceuticals.  All they do is stop neuronal replication and this only offers a short time period during which it remains sufficiently bioavailable and with an even shorter peak of bioavailability which appears to suppress PHN.  I think they have their place in offering short-term control of viral activity.  You have to keep taking it until the virus finally returns to latency.  But in our case, as sufferers of severe PHN, does the virus ever achieve complete latency as is suggested by standard texts?  I do not believe it ever does.  Doctors do not agree with me that there is a constant viral activity taking place and the possible cause of ongoing suffering, but this research suggests I may be correct... http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004237

Note the text in the first paragraph, "these findings can be interpreted as signs of a low, but constant level of abortive reactivation punctuating otherwise silent latency".  I believe this finding is fundamental to the reason why PHN occurs in some people.

Dr. William Halford in his blog, wrote recently of these anti-viral drugs that they are bad medicine.  When I stopped taking valtrex after a couple of years, my viral activity began immediately and with such vengeance as never before.  The virus immediately came out of its so-called latency.  This was a clear sign, I believe, that my immune system had not been fighting the virus, during the long period that valtrex treatment had continued.  Without the availability of valtrex to prevent replication, my immune system could do very little.  I believe this was a mistake, but of course, taking valtrex is the easy solution and doesn't require much knowledge of one's condition, nor how to manage it.  It is also the convenient treatment for MDs with limited time.

As you have pointed out, the virus causes secondary complications in some cases.  I too have suffered cognitive impairment and whilst it would be easy for me to dismiss everything as a herpetic complication, I have been meticulous in documenting my health symptoms and my treatments for a long period.  When the viral activity was especially strong during a difficult period some years ago, I suffered a very bad back ache accompanied by a constant headache lasting for days, numbness in the fingers and hands, in the feet, knees, calves and around my forehead, together with bladder incontinence.  Notably the areas of the legs in which I suffered numbness are innervated by the same dorsal root nerves as those which supply the genitals (sacral spinal nerves S2, S3).  Taking valtrex in high doses (3 x 1,000mg per day - the dosage for herpes zoster in fact) reduced or eliminated all these symptoms.  Scientists have shown that HSV resides in hosts' spinal fluid.  There is no doubt in my mind that the virus has the capacity to cause serious complications, if it isn't controlled.  I do not think you should be too worried, so long as you keep your condition under control.  Keep your immune system in good shape - not like mine, having been taking valtrex for so long.  In my case, in the earlier part of my illness, I did not know that HSV was causative and therefore it went untreated.  It also appears from the NIH article I posted, that HSV1 has a predilection for encephalitis and meningitis and HSV2, less so.  Not wishing to suggest a bleak future, but I have seen that many sufferers of HSV complications, with PHN, stabbing pains, burning and back-to-back viral activity, are often those with GHSV1, rather than GHSV2.

I also have increased white blood cells in urine, suggestive of infection every time I have a test.  This may be similar to your comment about your blood count result.

With regard to the dermatological irritation that you mention, you may want to have a read of the reply I sent to SureWhyNot earlier, where I mentioned the use of Tegretol/Carbamazepine.  This documented treatment was used successfully for an HSV sufferer with pain complications and appeared in the Journal of the American Medical Association, http://jama.jamanetwork.com/article.aspx?articleid=397956 .  The article begins, 'Over the past 20 years, a 50-year-old man has had several attacks of nearly unbearable pain and discomfort in the groin, perineum, testes, urethra, anal and perianal regions, and the upper anterior portion of the thighs. Although results of the examination of urine, rectum, and lower genitourinary tract had been normal, urologists attempted treating him for "prostatism," using antimicrobials and antispasmotics. These efforts were ineffective, and in the course of several weeks the symptoms would gradually abate.The most recent attack was the most severe, and after a month of ineffective treatment, the possibility of pudendal neuralgia, like the familiar trigeminal neuralgia secondary to herpetic inflammation, was considered. He had had herpes simplex virus type 2 a few years before the first attack, but there has not been signs of active infection in several years. Titers subsequent to the initial infection were moderately high...'

I purchased this complete article from JAMA and essentially, the treatment is as follows "...carbamazepine 200mg four times per day.  Immediate relief was found and after three weeks, complete relief.  Relief continued after tapering the dosage and discontinuation of the drug at the end of eight weeks".

For me, eight weeks was insufficient.  I began treatment in January 2016 and have only recently been able to taper-off the dosage down to 200mg every two days.  Finally it has resolved my symptoms of dermatological neuralgia, burning, itching etc. - similar symptoms that you describe.  It has not resolved those deeper pains, better described as an ache, which are usually at their worst when viral activity is present.  It has not resolved numbness, absence of skin sensation, male problems and others.

 

 

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SureWhyNot

James or Seeker have you tried Bowen Treatments or Lymphatic drainage? I know I was in perfect health without HSV problems when I had access to all the modalities I mentioned in this and other posts, including Bowen and therapeutic massage so I never knew which or if the combination was working. Did not care, it worked for me. I was also younger so perhaps this is age related for me at 60yrs young!

 

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Seeker1960

@James39

I

I'm sorry for what brought you to this site but I'm am so glad that you are here. Finally, someone who understands what I am going through  and has some great ideas on treatment. I have been looking for someone like you for 6 months. 

There have been some with various nerve issues but no one like you.

Thanks for joining here and I look forward to communicating with you often.

Edited by Seeker1960

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James39
On 07/06/2016 at 9:54 PM, SureWhyNot said:

James or Seeker have you tried Bowen Treatments or Lymphatic drainage? I know I was in perfect health without HSV problems when I had access to all the modalities I mentioned in this and other posts, including Bowen and therapeutic massage so I never knew which or if the combination was working. Did not care, it worked for me. I was also younger so perhaps this is age related for me at 60yrs young!

 

Hello again SureWhyNot, it's good to see your reply but I'm sorry that I haven't responded to you from a couple of days ago.  When I get really deep into research and involvement with HSV and discussions about it, I have a tendency to put my main work on-hold, but I've had to stop and concentrate on work this week, as I've allowed work to slip somewhat.

I haven't encountered the first treatment you've mentioned but will certainly look it up when I can.  I always have a documented list of future therapies that I want to try, so I add anything new to the list, for when I'm ready to switch treatment to something new.  Some other posters on this forum have mentioned colostrum and Seeker has mentioned low dose naltrexone.  Presumably for the latter which you mention - the lymphatic treatment - the intention would be to improve the immune system, is that correct?

I think what many of us start to realise after all our investigations is that with a strong immune system, the effect of HSV is likely to be far less, notwithstanding that it can still cause devastation in our lives.  If we can augment that improvement to our own immunity with the use of other natural treatments, some of which may have a direct action against viruses, while others will simply improve our immunity for fighting them, then we should be able to deal with it more effectively.

I know for my part, when I am stressed, my nerve pain usually worsens.  If I have meetings with difficult clients, or a tight deadline to work to, or worry, the stabbing pain frequently returns again, or the burning.  Is this a sign that the immune system is not holding the virus in check?  I think those of us who suffer with ongoing neuralgia from herpes simplex, can show a very clear and quick indication of when things aren't at their best.  Those other souls who perhaps only have outbreaks, but without the accompanying nerve pain, perhaps aren't able to immediately determine if the virus is beginning to activate, unless of course they have their prodrome.

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SureWhyNot

Hello James. The pursuit for personal understanding of our HSV and relief is all consuming. I came here last year because my system could no longer deal the way it used to since my life/age/body changed and was hoping others had found answers. 

I have always eliminated as much sugar and processed food as possible in my diet, now I am on FODMAP and SIBO diets to re-establish my microbiome as I killed that with lack of care/treatment/stress and a real passion for European Beer!!!! Today there is a posting regarding gut bacteria and HSV and I can relate to that one!!!

Thanks to very well informed Sanquine108 mentioning Bovine Colostrum I chose to get tested through Applied Kinesiology with my ND for the Lactoferrin element because I was already having stomach distress. I had immediate relief from prodrome, neuralgia and a Sacral OB stopped in its tracks. That lasted exactly 6 weeks until my ND suggested I double the dose as that would be the recommended amount, we started low. Soon as I put the second dose of the day in I went off track, starting repeated Sacral OB's. Too much of a good thing!

Now I am using Uristatin for the bladder infection that was hidden by dealing with OB's. Within 2 hours of taking the first dose my Sacral OB stopped in its tracks, all pain, neuralgia and prodrome stopped. This has been 2 weeks and holding well so perhaps peeling the layers will help.

During my healthy period where HSV had little effect on me, I was receiving acupuncture, deep tissue massage and Bowen, chiropractics, herbal medicine and homeopathics. I had a very stressful career but it had little/no impact on OB's.

I started again last year with my ND and he has to undo 7yrs of neglect/damage! I did notice when the supplements are working well I no longer have swollen lymph nodes or tenderness. This is why I was lead to Lymphatic drainage aspect.

Grasping at straws to get back to my normal.

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James39
On 08/06/2016 at 3:40 AM, Seeker1960 said:

I'm sorry for what brought you to this site but I'm am so glad that you are here. Finally, someone who understands what I am going through  and has some great ideas on treatment. I have been looking for someone like you for 6 months.

Thanks Seeker for the kind words.  My goal is substantially motivated by wishing to try to improve awareness of the complications from herpes simplex.  I came to the conclusion some time ago, that even though I cannot recover completely from my symptoms and cannot improve my quality of life, then at least I can help to raise awareness of how difficult the virus can be in certain cases.  I found a lot of misinformation about the condition and it was frustrating that it is still not well understood, despite plenty of evidence to the confirm its involvement in various diseases.

I strongly believe that in time, if treatments such as Dr. William Halford's live-attenuated therapeutic vaccine become far more readily available and gain widespread use, that there will be substantial numbers of people who find that their difficult complaints, various in number and magnitude, which they never knew to be of viral origin, will finally be resolved for them.  We are only now, just beginning to read of the association between herpes simplex and chronic fatigue symptoms, of herpes and fibromyalgia and of herpes and Bell's palsy, even though the latter was suggested in 1970 by the brilliant Dr. Kedar Adour.  I hope that the true cause behind these conditions and many others, often previously thought to be conditions in their own right, will be revealed.

1. http://www.healthrising.org/blog/2014/03/24/pridgen-reports-fibromyalgia-antiviral-trial-results-positive/  -  Dr. Prigen treatment, implicating the herpes family viruses with fibromyalgia.

2. https://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00021396.doc - Dr. Kedar Adour, Bell's palsy, "clinical examination, often detect involvement of other nerves, indicating that the condition is a polyneuritis, caused by the Herpes Simplex-1 virus (the cold sore virus), which is carried by 80% of the population"

3. http://www.entinstitute.co.za/images/HH--PGE-Hamersma.pdf

"Dr Adour stated:  I am here today to imply that herpes simplex is the great masquerader of our generation and the most frequent cause of acute cranial polyganglionitis...  The multiple manifestations of herpes simplex reactivation  are: Vertigo, acute hearing loss, unilateral headache,  unilateral fullness of the ear,  unilateral  tinnitus, lump in the throat,  unilateral neck or tempero-mandibular joint pain,  unexplained cough,  tendency to recurrent attacks. "

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SureWhyNot

LOVE YOU JAMES39!!!!!!!!!!!!!!!!!!!!!!!!!!!Not in a weird way though!

My ND thinks this way too and the layers to peel to get back to my health are many. Right now I can barely wear my reading glasses as the pain behind my ear makes me stop. There is nothing visible but so intense. This stops when the supplements are working and comes back when the supplements stop. Another reason I am thinking need for lymphatic drainage.

Closer and closer!!!!

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James39
2 hours ago, SureWhyNot said:

LOVE YOU JAMES39!!!!!!!!!!!!!!!!!!!!!!!!!!!Not in a weird way though!

My ND thinks this way too and the layers to peel to get back to my health are many. Right now I can barely wear my reading glasses as the pain behind my ear makes me stop. There is nothing visible but so intense.

Thanks SureWhyNot, nice to get your message.  What you describe of your pain, as far as I'm concerned, is the same classic symptom as mine, but within other locations, in so far as there is nothing whatsoever physiologically wrong with you at that site of pain, but rather the nerve which innervates this particular dermatome is the source of neuralgia.  These pains are typically absent on awaking each morning.  As I then begin the day, they start to return.

I suffered a piercing pain deep within my left hip joint shortly after being exposed to the virus, felt especially when contracting the pelvic floor muscle, together with substantial pain in and around the muscle itself.  I obtained x-rays which revealed the area to be sound.  There was no joint abrasion or apparent vascular problem.  At this time, back in 2008, I was unaware of having been exposed to the virus.  I would come to find that out later.  Similarly, I suffered pain in certain toes, knees and thighs, accompanied by numbness in parts of the distal edge of the shin and top of the feet, hands, fingertips and forehead.  There was also severe pain in the prostate, leading to fears of something much worse, but tests over a period of years, have revealed the prostate is in fine health.  So it is all a matter of referred pain - neuralgia, lack of nerve conductivity and the like.

From what I understand, you have demonstrated from taking supplements that you can affect the level of pain, just as I have done by taking herpes anti-virals, so in many ways, you're almost there in treating it.  At least you've been able to see an effect.  It seems to me that if you could suppress the pain for long enough, it may eventually resolve completely.  We know from some cases, that pain lasts long after the originating cause has been successfully treated.  I have managed to do this with some of my pelvic symptoms, by using the drug carbamazepine (trade mark Tegretol).  I purchased an article (this one... http://jama.jamanetwork.com/article.aspx?articleid=397956) which offers details of a case which had lasted twenty years, from Postherpetic Pudendal Neuralgia, successfully being treated with eight weeks' carbamazepine therapy, using 200mg x four doses per day, tapering down at eight weeks.  In my case, I have needed to continue this treatment for considerably longer.  Nevertheless, although it has not resolved all of my symptoms, it has resolved some of them and very successfully too.  Using this treatment, enabled me to finally taper-off valacyclovir which had been absolutely essential to me for two years, though primarily only as a pain treatment.  I was able to achieve this in conjunction with natural anti-virals in order to prevent reactivation.  I appreciate of course that your preference is to avoid pharmaceuticals, but nevertheless it is useful to be able to make an informed decision.

Having said all this, you do seem like you have an excellent naturopathic doctor to work with and who is prepared to consider possibilities which aren't so obvious.  The fact that he is willing to consider the implication of HSV is extremely encouraging.  I have not found any willingness to help me with my condition in Thailand, other than to diagnose the cause, then inform me that I "have to live with it", leading me to spend the past several years in self-treatment.

Edited by James39

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James39

There is indeed a substantial body of case studies available, implicating HSV in both forms to various types of neuropathy, including motor, sensory and autonomic.  Furthermore, they frequently give mention of ongoing pathology from recurrent herpes simplex episodes, not only therefore from primary outbreaks as is often suggested.  These findings are contrary to what one will often be told by MDs - that neuropathic complications are only the result of primary viral activity.

I have records of many examples which I have accumulated during the course of research, similar to the study you've quoted.  However, it is encouraging that in many cases, spontaneous recovery is reported and therefore I think it is important to see this not necessarily as a non-reversible neuropathology, but rather as a transient symptom, from which recovery is to be expected, especially if anti-viral treatment is instigated promptly.

http://www.ncbi.nlm.nih.gov/pubmed/19238769

http://jnnp.bmj.com/content/43/10/954.full.pdf

Both articles imply autonomic involvement, even if it isn't the main thrust of the text.  In the second article, though it primarily refers simply to urological complications of viral origin only, it does later go on to give findings that 17 patients with neurological complications (sacral myeloradiculitis of viral origin), presented with anogenital herpes simplex.

The former item - actually a study of pudendal neuralgia - offers an interesting explanation of why herpes simplex involvement is not only seen in sensory ganglia.  It states, "The varied presentation of PN may be a reflection of the nerve being of mixed type (motor, sensory, autonomic) and having multiple branches with anatomic variations".  In other words, what it is suggesting is that single nerve conduits often combine a series of nerve fibres, separately providing the three neurological functions of motor, sensory and autonomic and that consequently involvement with one, can sometimes affect the others.  Further, it adds that there are anatomic variations, which appears to indicate that different individuals are more or less susceptible than others, to complications from those infections.

Edited by James39

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afra1d

@James39

I do not mean to discourage or second guess your research but I found an article that describes a case where anticonvulsants had an immunosuppressive effect leading to the patient having a severe case of encephalitis. In the case linked below the individual presented with several symptoms which were later discovered to be caused by HSE (Herpes Simplex Encephalitis) and it appeared to be triggered by anticonvulsant therapy. Maybe your symptoms are infact worsening because of this new drug...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117859/

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James39

Thanks indeed for sending this link, afra1d, it's very useful.  It's amazing the level of information a group of us on this forum can jointly find.

Actually, I began using carbamazepine only in January this year.  My PHN symptoms date back a number of years.  When I began carbamazepine treatment, most if not all forms of pain resolved and as I've now tapered-off the drug and no longer taking it, many of those symptoms have stayed away.

Nevertheless, I think the fact that carbamazepine appears, from your article, to be capable of reducing the immune system, it is extremely relevant.  I have not seen a worsening of my HSV symptoms however since using carbamazepine, but clearly that's because... (a) I've been simultaneously treating with a multitude of immune boosters and natural anti-virals and (b) I've obviously been lucky!

Just as an aside from this, for what it's worth to anyone else, in the past when I wasn't self-medicating, but using local hospital treatment, they prescribed gabapentin (neurontin) and/or pregabalin (lyrica), both being modern-day versions of carbamazepine.  However, they were not able to eliminate the various forms of pain after withdrawing from them.  Only carbamazepine has enabled me to do that.

I think it is becoming quite clear now that to some extent, the worsening of my symptoms is due to taking valacyclovir for a prolonged period of time, although it would by no means account for why I suffered PHN at the outset of my disease.  As Dr. William Halford suggests on his new blog item, anti-virals have the effect of lowering antibodies progressively, on the basis that there is a lower level of replication taking place. - (see post at this link https://liveherpesvaccine.com/#comment-2625 )

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SureWhyNot
On 6/9/2016 at 10:59 AM, SureWhyNot said:

Now I am using Uristatin for the bladder infection that was hidden by dealing with OB's. Within 2 hours of taking the first dose my Sacral OB stopped in its tracks, all pain, neuralgia and prodrome stopped. This has been 2 weeks and holding well so perhaps peeling the layers will help.

Just wanted to update as things are going very well for me once I started treating the underlying problem of bladder infection I had no indications was a problem. I am no longer having prodrome, or neuralgia from HSV. So if I have no other medical problems I have no problem with HSV

The pain behind my ear was also same time as I tried to introduce foods that have been reacting on me. Tried to have sacral OB but stopped it in time so I believe lymph nodes being stressed, once that cleared no problem again. Not sure why vegetables would cause me to react but I am definitely getting closer to understanding what I have been dealing with for over 3yrs now.

The uristatin contains equal amounts of uva-ursi, Berberine HCI, Buchu, Echinacea. Some of these are known HSV fighters and the rest fight bacteria and fungus and trigger the body to go into action. Not saying anyone should take these, I am under the care of a holistic Dr. but for those with herbal understanding you may find the combination and my results interesting as everything that was supposed to help only caused an OB before.

If any of this helps direct others,  yeah!

 

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afra1d

@James39

I must say just like @Seeker1960 appreciates finding someone like you on these forums due to your similar experiences with PHN, I am also glad to have stumbled on this thread and found someone equally as interested in performing their own unbiased research into treating this hell of a virus.

While I also experienced issues wih my nerves from day one, maybe since I have been on semi-suppressive (valacyclovir) therapy the nerve issues have not complicated as yours have; but even to this day I can feel the viral activity primarily in my nervous system in the form of twangs, dull aches, zips and zaps that run from the root of my spine to the tips of my toes and fingers which is quite irritating to say the least. These feelings, as you also describe, seem to subside after sleeping but slowly start to creep back throughout the day and worsen with stress, or after eating certain foods.

I also had not had a "classical" dermatological manifeststion of the virus until recently and (of course) it was because I was low on valacyclovir and stretchig out my supply while also getting little sleep, and drinking more alcohol than normal.

Unfortunately, despite reading Halford's information on why antivirals are bad for the immune system, I still rely heavily on them for relief from almost constant symptoms which resurface when I stop taking them regularly (at least 500mg a day to every other day to keep it at bay). I'm assuming my poor immune response even after being infected for over 3 years is due to my reliance on antivirals, but it is the crutch that I rely on and the only thing that gives me at least 75% peace of mind.

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! :)

Edited by afra1d
Grammar

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