Hi, I am 34 years old and have had genital herpes of 8 years. the outbreaks have been chronic for the entire time. I have had outbreaks at least 3 weeks of every month, and medications have not worked. I seem to be immune to valtrex, zovirax and famvir, as I have taken all of them, and even tried supression therapy. my life has been devastated becuase of this, and I have not been able to recieve any help. I am writing however to discuss the possibility of the Virus causing nerve damage.
When I contracted the virus, about a year later I started to get really bad lower back pain at the onset of an outbreak, shortly thereafter, my legs started to ache at night time. I could not sleep becuase of the pain in both of my legs. It was a deep throbbing pain, and i always described it as a feeling of not getting enough circulation. Excersise made the pain worse. Even walking seemed to trigger the pain. At this time I had MRIs but they found nothing in my spine, and I was advised to take amytriptaline, which caused me to faint after the first dose, and I was afraid to resume so I took nothing thereafter.
then two years ago, I developed pain in the soles of both feet. the pain was present only when standing. it felt like the weight of my body was too much, although I only wieigh 125 and am 5'7". I was very worried at this time, and after six months, I had to stop working practically, I was only able to do sitting tasks. I went to the cleveland clinic in Florida, and they ran all sorts of tests including auotoimmune tests, more MRI's and nerve conduction tests, which showed small nerve fiber neuropathy in one of my feet. But they did not know what was causing the neuropathy. they did not belive the Herpes could be respnsible, but I feel very strongly that it is directly linked to the Herpes.
I also have been researching, and found something called tarlov cysts, my findings of this suggested these symptoms, and also that the herpes virus could be responsible.
Please if you can give me any help, direction I would be greatful. I am very afraid that irreversible damage is happening to me, and I want to do whatever I can to reclaim my life and get healthy. At this stage, my feet are still very painful and my outbreaks are relentless!
Please help me.
First, and maybe most important: even apart from the neurological symptoms you describe, your description makes me skeptical that herpes is the main problem. In 30+ years in this business, I have never seen someone with such frequent outbreaks and apparent antiviral drug resistance. If there is the slightest doubt about the diagnosis, or if the virus has not been isolated and tested for susceptibility, you need to fill those gaps. For example, you need to have the virus isolated and tested for susceptiblity if not done recently. You should consider consulting with an infectious diseases specialist, perhaps at an academic medical center, if that hasn't been done.
OK, assuming you in fact have genital herpes: the only documented neurological manifestations of the disease are 1) transient nerve dysfunction with the initial outbreak, typically causing transient bladder paralysis or problems with defecation, always resolving within a few weeks; and 2) prodromal symptoms such as numbness or tingling for a few days before an outbreak, in roughly the same area where the outbreak will occur. That's it. Some people with herpes have complained of back pain, leg pains, or other neurological syndromes, including stories similar to yours, but causality has not been proved in any such case. Since 25% of the population has HSV-2, by chance alone about a quarter of people with your sort of symptoms will be HSV-2 positive. Thus, most such cases reflect two entirely separate, unrelated disorders, and HSV is not the cause of the neurological symptoms.
So from that perspective, I have to agree with the opinion of your Cleveland Clinic doctors. My opinion might change if you said antiherpetic therapy helped, but apparently it does not. Unfortunately, "feeling strongly" it is due to herpes doesn't count for much. I mean nothing personal by that statement, just that scientific data are much more reliable than someone's subjective feeling.
Bottom line: See an infectious diseases specialist; confirm the diagnosis of genital herpes by isolation of HSV from a future outbreak; if/when HSV is isolated, make sure it is tested for susceptibility to antiviral drugs; and if not done, have an HSV-2 antibody test. Then follow the ID specialist's advice about the possible link with your neurological problem and/or further evaluation of it.
Sorry to hear about your ordeal. I too have herpes and have had it for 10 years and still get monthly OB if I am not on Valtrex. It does not cause me any other problems thank god. I want to ask you if you have given the Valtrex time to work, some times you may need to take it for a few moths before it will stop the virus from replacating. It's a very safe drug but expencive, and you can safly take up to 3000 mg a day. Have you tried taking at least 1000mg daily for 6 months or so. If not you reallly should give it a try. All the doctores I have spoken to say if 500mg does not work usually 1000 will. You may process the medication too quickly and not have enougph in your system to treat yourself. Hope you find something that works.
thank you for your comments. I just wanted to clarify a few things, when you said they should isolate the HSV from a future outbreak to see if it is HSV, do you think it could be something else other than Herpes? I have been teseted positive for the disease, and the outbreaks are both vaginally and less frequently on my buttocks. (when I get herpes in the vagina area, it is usually a small sore, and only one, flat in appearance, unlike when it is on my buttocks. When I get an outbreak on my buttocks, there are many small blisters clustered together.
I have always wondered if it could be something else?? but what?
Also you said they should isolate it and check it for suseptibility to the antiviral drugs, if they don't work, and indeed I do have Herpes could this mean that I have a different strain of Herpes? Zovirax never seemed to work at all, it was the first drug I had taken. Then I tried Famvir, which only worked for a short while. So after I tried valtrex and the same thing happened. Let me mention that working only meant that the outbreak was less severe, but it never stopped them from coming.I always got a new outbreak before the other finsihed. I tried taking valtrex everyday, and even increased the dosages, but it did nothing at all, so eventually I stopped taking any drugs, and just tried to build up my immune system naturally. Of course I am still ahving them.
I want to take your advice and go and see a specialist, I live in the Bahamas and we have none here, so I would like to know if you could recomend someone or an academic medical lab as you mentioned in your reply? I could go to New York, florida or San Francisco. Anyone of these states would be fine, as I have family in NY and San Fran, and Florida is close.
If you could recomend someone really good I would appreciate it.
Herpes rarely recurs in more than one anatomic area. If the buttock lesions are herpes, the vaginal ones probably are not; and vice versa. (The buttock lesions sound more typical, as you describe them.) You don't say what tests were done that were positive for herpes; some tests are reliable, others not.
HSV can be resistant to acyclovir and the other drugs, but it is uncommon. The failure of Valtrex to control the symptoms suggests herpes might not be the cause. There is no way to "build up the immune system" to prevent herpes outbreaks.
I do not make named referrals. However, you should visit the American Social Health Association website (www.ashastd.org) then call them for suggestions about herpes-knowledgeable providers in one or more of the cities you mention. Or see the website run by the Westover Heights Clinic in Portland, Oregon (www.westoverheights.com); and perhaps call them and see whether they can see you. Or look up the medical schools in some of those locations and call them to identify infectious diseases specialists who are familiar with the disease.
You might want to consider the possibility of celiac disease. A fair percentage of people with celiac disease get a blistery type rash, and perhaps the most commonplace for it to appear is on the buttocks. Celiac disease can also cause systemic symptoms, including peripheral neuropathy and other forms of nerve damage. A general practitioner or internist could probably order a celiac panel for you (that merely involves a few blood tests). If you were positive for any of the antibodies, you would then need an upper endoscopy (performed by a gastroenterologist) to confirm the diagnosis.
thank you for your comments, although I don't think I have Celiac disease. I just looked up the symptoms and don't really have any of them. The sores I get on the buttocks definately characterize Herpes.
It is the vaginal outbreaks that the MD suggested could be somethning else. I am just baffled by what other std could cause so many outbreaks for the past 8 years, as most of the other stds don't seem to be recurring like Herpes.
If anyone knows what it could be please make some suggestions, including the MD.
The MD said that it is uncommon for Herpes to travel to other locations, but it is not impossible.
Firtly thank you for writing back and being so helpfull. I can honestly say that you have offered more help than anyone I have gone to see! I feel more hopeful now knowing that there is a reason for these outbreaks, rather than having to accept that I can't get any help whatsoever.
I was still curious about the celiac disease. I went back online and researched it further as my first attempt was very quick.
what I discovered was very interesting
After not getting furhter than a diagnosis at the cleveland clinic, I decided to see a nutritionist who also had great success with chronic disease reversal, through diet change.
(By the time I went to see this doctor, I was so bloated, gained 20lbs, and constipated.
He also ran a series Advanced metabolic nutritional laboratory studies .
a) amino acid spot test
b)food Ab, spot
a)the results were, amino acids very low in the red
b) the good bacteria in my intestines were severly depleted, and there was an overgrowth of the bad bacteria
c)my cortisol levels were completely out of whack.
I also read that celiac usually can be detected by higher levels of globumin, which is the one consistant finding on all of my protein analsis tests, but doctors didn't seem to know why they were elevated.
One of the first things we did was create a new diet, and wheat was taken out. I must say there was a change. after a few months though I began eating small amounts of wheat absed product, and the problems have become chronic again!
If your symptoms improved after eliminating wheat from your diet, that is certainly characteristic of celiac disease, but you would need the tests to know for sure. People with celiac disease react to gluten, which is found not just in wheat, but also in a number of other grains, including barley, buckwheat, and rye, and in small quantities in many commercial products such as bottled salad dressings and soy sauce.
If you suspect that celiac disease might be a possibility, then I strongly encourage you to arrange for testing rather than experimenting on your own with avoiding gluten. You need to be eating gluten on a regular basis for the celiac tests to be positive -- if you aren't eating it, you are likely to have a false negative result. Celiac disease requires lifelong adherence to a gluten-free diet to avoid serious complications, so it's very important to know for sure whether or not you have it.
Good luck, and I certainly hope you find a solution for your medical mystery.
I read your comment about nerve damage from herpes, I had shingles in my left eye, had a tooth that was abcessed a dentist let go too far, the herpes/infection went to my brain, then it caused tarlov cyst on my brain and spine. I started have pins and needles in my feet and hands, it has now spread all over my body. I live in extreme pain, it moves around all over my body. I have been to so many doctors and they cannot help and they cannot tell me what caused it. Like I said my mri on the brain show prior infection and lesions. I know that herpes follows were you have infection. I live in pain every day. Doctors just keep giving me pain medications. I need some help and do not know where to go??
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