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gotitsowhat

How sensitive was your doctor when you were diagnosed?

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gotitsowhat

I, like a lot of other people, went through a bad experience during the process of diagnosis for herpes. And "process" was the correct word, too--I had to see several doctors before I got diagnosed because, I later found out (from the doctor who finally agreed to test me and who diagnosed me), doctors at Kaiser, at least, do not want to be the one to diagnose someone with herpes. People become upset and the doctors just don't want to have to deal with it. Some people even get suicidal over it or get divorced or sue people--the doctors just don't want to get involved. That is why it took several doctors and some persistance on my part to even get tested.

And then when I was diagnosed, it was in a one minute telephone call. The doctor said, "Unfortunately, you do have genital herpes." I was in shock. I guess I should be grateful for that word "unfortunately" because it showed some compassion for my feelings. But...a one minute phone call? With no follow up, no in person appointment where I could ask some questions, maybe at least be handed a pamphlet...? I felt like I'd been shipwrecked and left on the shore to sink or swim...or just die. I withdrew into a shadow existence for 10 years.

From what I have read here, and heard elsewhere, it seems that, to doctors, a herpes diagnosis is not a big deal. After all, they deal with major illnesses, life threatening conditons, major surgery, cancer, terminal illness, the works. So, to them, telling a patient the patient has herpes is kind of like telling someone he or she has a sweat rash or an infected hangnail. They just don't think it's a big deal. They will tell you very casually, just toss it at you like it was nothing and get on with their day. While you, the person who has just been diagnosed, now has to live with a sometimes painful condition that will change your entire way of dealing with sexual intimacy and personal relationships, something that touches on a social stigma and sends you reeling, wondering how you will cope. An uncurable, life altering conditon. And doctors often just chuckle about it, or dismiss it as no big deal. I often wonder if they'd feel like that if they were the one being diagnosed.

Don't doctors need a bit more education about how to be sensitive to handing someone this kind of diagnosis? Maybe one of us, or several of us, should write a letter about it describing how it has affected us and send it to some medical organization (maybe the AMA could tell us where to send it).

It may not be a big deal to doctors, but it sure is for those of us who have it. And doctors need to learn that mentioning it casually in a phone call or tossing it at you with no warning may not be the best way to give the diagnosis that changes so many lives. In my opinion, they need to be a little more sensitive and give out a little more information than they generally do on this subject.

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SanFranGuy

I have not been diag'ed yet, but I did have my appt today. They took a blood test for HSV2 and a swab as well from the area that was affected. I went to a KP facility in the bay area. The doctor that I have been seeing for the last year was very understanding. He kept me in there for 30 mins and went over everything and how it will affect me. He also gave me a few websites to look up more information. it was upon his visual observation after I had this burning sensation that he said it looks like herpes. All the classic signs. So here I am posting here. :roll:

So all in all, my doctor at KP was really cool about everything. I wish there were more like him.

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chay5

Well, the first one was horrible: he looked at me with disgust and said "that looks like herpes" and left the room. Before this "diagnosis" he was very friendly and chatty, - afterwards, he never looked at me and was very brief. He made me feel so bad!

Then, I saw a few other doctors. Contrary to the first one, they didn't make a big deal about it. When I asked "how to" question about sex, they'd just say: well, if you have this pimple there, just tell the guy to wear a condom. When I said that a condom doesn't cover the area in question they would give me a look like I was being overly concerned. "He won't die from this, you know" - they said. Then many times I was told that what I have didn't look like herpes but they never wanted to do tests. I had to really ask and ask and in the end, if they gave in, I knew they didn't like me for telling them what to do. Doctors always made me feel like I was making too much of a deal about it. On the other hand, maybe some of them were right not to panic, just be reasonably cautious.

So anyway here I am today being so very concerned for my imaginary potential sex partner :roll:

I wanted more from doctors, perhaps the kind of information one finds here with all the details and possible scenarios and how to answers. Maybe I am disappointed because I do not like to leave any questions unanswered and I like to dig to the bottom of the matter. Still after reading so much about HSV I find many things are not quite clear. I think probably if my doctors wanted to really inform me well about herpes, maybe it would take them hours and they do not have time for that. The information is out there and anybody with internet access can find it.

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helied2me

I have a great gyn and she tries to give all her patients as much time as she can. I have probably been one of her most trying patients but she has been great. Apparently she still thinks that having chickenpox as a kid will make you test positive for type 1 but nobody is perfect, right?

I was one of those who was severely depressed and suicidal and she did everything she could for me. She felt I really needed counseling and suggested a couple of therapists and persuaded me after several attempts to try prozac. She is at a loss as to what is causing my symptoms but she keeps trying. I have had 2 PCR swabs and 3 blood tests, all of which have come back negative and now I'm waiting on my 4th test and I'm scheduled for a biopsy Monday.

I guess if my latest test comes back positive, I won't need the biopsy so I hope the results are in before she snips but it's been almost 7 months now and bless her heart, she's still trying to find answers for me. I just pray that I'm not starting a new thread in this section next week. Guess you all will know soon.

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HG08

My doctor was extremly supportive. His nurse; however, shouldn't be allowed to communicate with patients with regards to given results. She called me the day before Valentine's Day at 7:30pm and told me that my cultural was positive for herpes. We talked a while and she was like well be glad that you don't have HIV. Don't get me wrong, I am so happy that I don't have HIV but I think it was the way she said it. Then I got quite on the phone, she said..."maybe I should have called after Valentine's Day." WFT!

Ok so I'm still in shock 2 days later. The nurse calls again and gives me my results....Again! As if I really wanted to be reminded of this. Then she says that the doctor will call me if there is any changes. I just felt like that lady didn't know what she was doing and she was really unprofessional the way she handled things.

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gotitsowhat

Here's how I see it...

The diagnosis should be given in person, not over the phone, ideally. Or, if given over the phone a follow up appointment should be made for the next day to talk to the doctor about it. Then you have time to compile a list of questions. You should be asked if you want to join a support group either in person or online. You should be given basic information if you need it and all questions you have at the time answered. You should be told what to do to manage your herpes to avoid outbreaks. You should be given a prescription. The doctor and/or nurse should not be casual and dismissive about it and should definitely not say, "Well, good thing it's not HIV" or some other such trivializing useless uncomforting remark.

In the waiting room, or pharmacy, the receptionist and/or nurse should not discuss the details of your case in a voice loud enough to be heard by people in the waiting room or doctor's office. You should not have to answer very intimate questions about your sex life in the waiting room or at the pharmacy.

Your concerns should be taken seriously and you should be treated with respect. The doctor should not chuckle and tell you that this is no big deal. If the doctor or nurse feels that those who contract this disease re "bad" then that doctor or nurse should ask that another doctor or nurse take your case because they are not able to be professional about it.

The doctor's office should follow up by contacting you and asking you if yo are all right and show concern for how you are dealing with this situation. If you need counseling or some further meds or support, it should be available for you. People have been known to commit suicide over this. People get divorced over this. Some people, like me for instance, withdraw from their entire social world for years over this. It should be taken seriously and patients suffering from herpes should be treated with compassion and respect.

BY THE WAY, I RE-WORDED THIS SLIGHTLY AND TURNED IT INTO A PROTOCOL RECOMMENDATION FOR DOCTORS AND NURSES AND I INTEND TO SEND IT TO KAISER.

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marriedwchildren

HMM

I have an issue letting the nurse give you results over the phone. I NEVER thought i would of had a + result given the fact that I was married 24 years and neither of us cheated, I got it orally when my hubby did not have a cold sore but when i called because the pain wouild not go away, i was stunned and felt like I was going to vomit. The nurse told me oh honey its niot a death sentence and look at the bright side, you got this virus legally not like others. I told her herpes is herpes and it doesnt matter how and who you are the result is the same "devastation to the person" This was just uncalled for. My doctor never called me to ask how i was and the only time i talked to her is when i was on valtrex for 3 days and still had new sores pop up. Then and only then would she talk ON THE PHONE with me. I think she should of made time to talk to me in person and explain this virus to me so that i could get information, i found out about this virus from being on this forum and with the help of great people that post on it. So my doctor should take lessons in bed side manner and empathy for her patients. Thanks to all of you who have helped me maybe i should give you the copay that doctors ask us for and get no help:D Take care

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Lifeislife

I guess they aren't joking when they say that New England has the best doctors.

When I went to the doctor's my normal doc was on vacation and I had to see one of his associates. She examined me, I was not expecting anything except an in grown hair or something like that. She had a serious concern on her face and explained that it looked like herpes. She did not get into alot of details and in reality, I didn't want to talk to her about it. She was not my normal doctor. She could read that pretty easily and let me be.

I called for the results and spoke to my doctor's nurse. She was very sympathetic. She asked if I had any questions, to which at the time I really didn't. I wasn't ready to know.

They scheduled a follow up with my normal OBgyn Doctor when he got back. In that appointment, he managed to make me smile. Walking through the door, looking at his clipboard and without looking up, "Jessica, Jessica, what have you been doing while I was away?"

(Ironically, a year later, the same month and while he was away on vacation, I found out I was pregnant and miscarried. When he got back and walked through the door of the follow up, he said..."Jessica, jessica, what have you been doing while I was away?")

We talked and he expressed how common it was and that I should not let it destroy me. He said that nearly everyone would test positive for HSV in some form and that even he has had coldsores his whole life.

Fact is, his nurse is so kind, caring and professional that I would speak to her as much as I would speak to him.

Recently it occurred to me that I did not know or remember what type I had. I really didn't care at the time. I called and even the nurse had thought it was type 2, but looked it up and called back to let me know it was type 1. Less than a week later, I received an envelope from the office, inside was a pamphlet for Genital HSV-1 in women and a post it note.

I was just making copies of these for the doctor and thought you might like the information. Take care and be well, Julie.

What a nurse! Just thinking about her making copies a couple days after she told me about which strain I had, she was thinking of me and went out of her way to write up a note, envelope and get it in the mail without being asked.

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shockingtart

I totally agree. I found out almost a month ago that I had herpes and my doctor told me the same way - a one minute phone call. I didnt get to ask any questions and it was like she passed it off as a common cold -take these meds for 10 days and call if you have any problems.

Meanwhile, my relationship of two years is falling apart and I'm not sure when or what I can do now sexually.

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lilabeth08

I also found out through a phone call.. Mine might have been about 2 minutes though ;) Some nurse called and said I had herpes and that they were writing me a prescription for Valtrex.. I started asking questions and she seemed annoyed and wanted to know the name of my pharmacy so she could get off the phone. That was pretty much it. Not even any freakin refills on the bottle. They should have wrote "refills for life" on the bottle... Not like anything is going to be changing

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shockedgirl08

Seems like a lot of people had some bad expirences... doctors are not always as sypathetic as we would like.

mine told me" looks like herpes" " I can fix it though"

bad choice of words.

my real doc was annoyed at all my questions in trying to find out how i got it. he wanted me to drop it.. he made me so mad once, i hung up on him

My doc office called me with results, telling me it was negative.. then called me back later, and told me they made a mistake.

then thye lost my blood work..

not good

i am looking for a new doc, just havent gotten my ass out to do it yet..

baby steps....

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Twilight

People get phone calls?

I had to call my doctor for the test results and the nurse told me it came back positive. She sounded sad when she said it which I guess made me feel like at least she cared. I asked her what I should do and she scheduled me to come see my doc. When i went to see him he was the same as when he was checking my baby's heartbeat. Just like, hey, how ya doing? Like, it was just another day. Nevermind, I was a total wreck. But he just told me not to worry so much and as long as I didn't have an outbreak too close to delivery I could still have my baby normally. I had to ask all the questions though. He didn't volunteer any information. It was a little like pulling teeth. I love my OB/GYN to death but he was being so trivial about my life altering disease! i wanted him to reflect the panic in my eyes! But I got nothing. Just calm, reserved smiles and assurances that a month before I have the baby he would put me on Valtrex daily but in the mean time to just take it if I had an outbreak. I broke down crying and begged him for an HIV test. All I could think is if my ex gave me herpes, who's to say he didn't hand over HIV while he was at it. My doc acted like I was being a tad dramatic but wrote up the blood work. He said, you know you're going to get another one of these when you're in labor right? But I didn't care. I had to know immediately. It was negative, thank goodness. But it didn't make me any happier about having herpes.

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La Femme

I received a phone call from my doctor (almost a week and a half ago). He told me that I was positive for both types of herpes. I asked him to repeat himself because I didn't think I heard him right. He stated again that I was positive for both types.

I said Ok and to make sure that I had my results available to me. He said not to try and worry about who gave it to me because I could have had this from the first time I had sex. He told my IgG numbers and stated it was very high.

Now in looking at my results, I have no idea what type of herpes I have and I certainly don't want to use him again to reorder IgG Type Specific tests. He never asked me if I wanted to come in and discuss or anything.

But to all - I'd like to point this out. Am I the only one that thinks when they go to the doctor and order STD tests that they would include herpes. If infact I've had the virus for so long, I believe I would have found out prior to now. So why do you have to ask the doctor specifically for the HSV test. Don't they have an obligation as a health care provider to tell you what is routine and what isn't?

Am I living in another world or is that too much to ask?

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ginnyp

I fully believe that if you ASK for a full STD screening, the doctor should at LEAST tell you that herpes isn't included unless you request the specific blood tests. They don't even TELL you that, and so many people think they are being fully responsible when they ask for an STD screening, myself included. But since they never tell us herpes isn't included, truthfully, how many of us would actually know that we weren't fully tested? It's actually unfair IMO. We try to be responsible and careful and ask for the tests, and we think we're getting it but we're really not. I truly think something about this has to change, just because normal people don't KNOW! I sometimes feel like there's a conspiracy among doctors and pharmacies and us little people are just left to deal with the problems.

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GeminiGirl

I also had a very negative experience. I had gone to urgent care, not my primary doc. She looked and said it looked like herpes, gave me the Rx, and asked if I had any questions. I had kind of guessed what it was, had done a little research, and so was kind of prepared. My only question was whether the test would tell whether I had type 1 or type 2, since that seemed like a pertinent fact to me. She said it would.

A week later, got a call from the nurse informing me that my test was positive. I was not surprised, and asked her which type it was. She didn't know, and transfered me to the doc. The doc was completely dismissive, and kept telling me "I don't know why you want to know. It doesn't make any difference. There's no reason you'd need to know. The treatment and the symptoms are exactly the same." I told her, "I am going to have to live with this for the rest of my life; I'm just trying to get as much information as I can so that I can be educated about my health situation." She then again tried to dismiss me by saying "Well, it's very complex." And again said, "It doesn't matter what type you have. You don't need to know."

I kept pressing her, and reminded her that the ONLY question I asked her the last time was whether the test would indicate which type I had, and that she had said it would, so I was expecting that information from her. She then backpedaled and admitted that for some reason, even though typing is usually done on every sample, it was not done on my sample, and that she would contact the lab again and ask them to do it.

So after ANOTHER week, I finally got my type info from her.

Sooooo glad she's not my primary care doc!

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CurlyQ

More of the same...

I went to my usual gynecologist, but since I'd requested an appointment for that day, ended up seeing a CNP there.

She was nice enough, but she didn't even bother to take a look "down there." She asked for a urine sample and came back ten minutes later with a prescription for macrobid (for a UTI, which I did have) and a discharge notice. I was surprised... and hoping that was all it was... so I went home, took the meds, but the next day I was in even more pain. I called back and insisted she do a complete exam.

She did do the exam, but her only words were, "Well, what do you know? There's a little ulcer here right above where you pee. I bet it hurts!" I was thinking, "OF COURSE IT DOES! WTF do you think I came in here for?! A good time?" I knew what it was pretty much, as I had done some 'net research like the other poster above, but still... I started crying. I couldn't help it. She just said, "Yeah, I would have the same reaction if someone just told me I had herpes."

To her credit, she did do a complete STD work up without me asking for it and she did suggest I get counseling, since it is a life-changing occurrence. She didn't, however, suggest a counselor or even try to provide any advice. She handed me a prescription for Valtrex and Zovirax cream with three refills and told me to call her when I ran out. She didn't explain possible side-effects or even dosage. I'm still unsure about whether I'm just supposed to take the Valtrex for the duration of the OB or just forever. I don't know HOW I should apply the Zovirax, since the lesion is inside a "fold" of skin between my clitoris and my urethra. I still don't know if I can ever have unprotected sex again. Nor do I know if I can take a bath without the virus spreading to other parts of my body (i.e. can it travel in water?).

So, I guess she answered the question I went there to have answered, but she didn't answer any of the obvious ones that followed.

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face527

she was helpful(ish)

Just today, talked about it with my doc. It is what I have, but waiting on blood work to be certain and learn which type (it matted to me more than her). someone previously mentioned their doctors hesitency to determine which type...my doctor was the same. she explained to me that it no longer matters because both types can appear in both locations and treatment for either type is the same. she said even transmission rates are the same...which is a fact i intend to look into further. anyway, in trying to focus on the positive...droping the importance associated with specific types seems as though it may help the social stigma. i would assume that if we quit specifying types then gh may not be viewed as anything more than cold sores....or who knows...maybe cold sores would be the horrid, shameful disease society has us viewing gh as. that is what my doctor told me when i cried. she said "you have a virus that causes cold sores...thats all. tons of people get cold sores". her intentions were good, she handed me tissue, and tried to assure me this was not the end of my world...but we'll see.... the only thing i could have suggested for her bedside manner was that she acknowledge that i was upset. its bad enough to be upset, but to made to feel like your reasons are irrelevant, like you are overacting, just adds insult to gh.

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face527

forgot to ask...

my doctor also seemed unconcerned about me passing this on. she initially told me to come back when i have another ob so we can do a culture...i said "and what do i do in the mean time" and she said "relax". I guess to her its no big deal if i give my boyfriend herpes. to her, its just another number, just another number to add to her "everyone gets cold sores" statements. that was the most unsensitive part of my visit. she said use condoms, and that it wasnt necessary at this point for me to tell my boyfriend, because essentially i would be saying "hey baby my doctor thinks i MIGHT have herpes". she realize how stupid she was being when i said, first off, that condoms dont protect 100%, and secondly..."what do you suggest I do...sleep with him, and then explain two weeks later why his penis seems to be falling off?" THAT was when she agreed to do my blood work.

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blueeyes24

I am a college student, and I missed the original call I got right before the clinic closed at 8...so I had to wait until the next morning right before my 8 oclock class. the nurse at the emergency clinic I went to was actually very caring, and when I started crying she stopped me to ask if i was okay. She even noticed that i was lying when I said it wasnt. She tried to console me and was really very sweet, pointing out that my mother who has cold sores would test positive for HSV1 as well!

Later, I called my doctor and she was actually very cheery and nice, she answered all of my silly questions and told me to call her if I could think of anymore.

I think no matter how you hear it hearing that you have herpes is NEVER as sensitive as you want it to be. It is life changing news mostly because of how embarassing it is to go into relationships...but truely for doctors it isnt the worst news they give. Telling a 19 year old girl that she has herpes is probably so much easier than telling her she has HIV, Cancer, Diabetes ect.

Not that that gives them a reason to be insensitive....

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gotitsowhat
for doctors it isnt the worst news they give... probably so much easier than telling {a patient} she has HIV, Cancer, Diabetes etc.

I'd just like to comment that at least one person on this forum has said that it was easier in many ways to find out she had cancer than to find out she had herpes. This speaks to the huge stigma and other problems associated with herpes. When you have a catastrophic illness like cancer, you have the full support of the whole community, your family, friends, spouses/lovers and also nurse and doctors. It is a terrible illness to have AND EVERYONE KNOWS IT and you are not seen as at fault but instead worthy of kindness and support. Herpes throws you outside the usual human community and the usual chain of support. Doctors and nurses tend to be casual about giving you the news and do not, for the most part, stick around to let you vent and ask questions. You are made to feel that your pain is just not important. Sometimes we are too embarrassed to even tell friends about it--I was for over 10 years. Many people are afraid to tell spouses and lovers about it. Many people, because of their circumstances, realize that they have been lied to and/or otherwise betrayed by people they trusted. Bad as it is to have an awful disease like cancer, I think herpes is bad in its own way. Being cast outside the human community and having your sex life changed for the worse permanently is not a small thing.

When my doctor told me that herpes wouldn't kill me, I answered, "No, it doesn't kill you. But sometimes it makes you wish it did."

There is no question whatsoever in my mind that a doctor would feel very, very differently, and a whole lot less casual, about herpes IF HE OR SHE WERE THE ONE BEING DIAGNOSED.

There's an old saying, "Everything's funny. As long as it's not happening to you."

I think it is silly to compare herpes to potentially fatal catastrophic diseases. In any bad situation, things can ALWAYS be worse--or better. It does help to have a balanced perspective and to know that. But would you tell someone who just lost a leg in a car accident, "It could be worse,you could have lost both legs"? It's always possible for something bad to be worse. We can always be grateful for something. But that doesn't change what it's like to be told that you have a painful, permanent, life changing, socially stigmatized disease.

More sensitivity is called for here by the medical profession. I am writing a pamphlet on this which I plan to send to Kaiser in the hopes they will pass it on to the doctors there.

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blueeyes24

It may be easier to be told that you have cancer, but which is harder to tell someone thats what I was talking about.

I know its horrible, but I do understand why doctors need to shut down a little bit when they give out bad news.

How do you think it feels to give out news like that every day? As a lab tech to call a young girl or boy and say "you have herpes" and hand them some of the worst news of thier life? It does take its toll on the doctor if they cant maintain a level of professionalism about it. Optimism is important

Once again, that doesnt mean that doctors should be insensitive, and they do need to answer questions accuratly. But most doctors probably do know how much it hurts, thats why its so hard to give bad news.

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La Femme

Guys

Bad news is bad news. Yes the doctors should always be sensitive - no matter what. Do you think they would want to be responsible for somebody taking their life (I definately think not). You never know how someone is going to take the news.

Not only should they be sensitive, they should be informed. I.E. if you are a gyn, then you should be informed on womens health, std's, etc....

My doctor (GYN) told me that I have both HSV 1 and 2, but when I picked up my lab report I noticed that it didn't differentiate. So not only did his insensitivity made me feel like shit, but his ignorance of the matter truly confused and pissed me off.

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  • The Hive is Thriving!

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    • Cas9
      OK sir, let me explain so even you can understand. When I speak of inaccessibility, I'm referring to the immune system; i.e. In general, the immune system does not enter cells and kill viruses. Further, because the herpes virus resides in the neuronal cells, the immune system wont kill those cells (for obvious reasons) to clear the virus. The end result is that the virus is inaccessible by the immune system and the virus remains for life. My statement is/was accurate.  
    • NewToTheHive
      Well guys, i had the talk... and it went even worse than I thought. He refused to talk to me in person, so I had to do it through text. He said “well I’ve never had symptoms, so I’m not getting tested. You work in the medical field, you probably paid someone to fabricate those test results to try to trap me into a relationship. I will have no further contact with you” ... and then he blocked me from everything. And THEN less than 24 hours later, messaged my old room mate asking her to come over for a beer and movie night.  HES DISGUSTING!! I was considering taking legal action against him, because with his total lack of sympathy, and the fact that he tried to sleep with my friend less than 24 hours after I told him, I think he knew he had it and just didn’t care... so I messaged his ex on Facebook to see if She knew he had it. She wasn’t sure but she is definitely going to get tested now... she told me he is an extreme narcissist and emotionally manipulates people. ... after doing my research, it all makes sense.    So since hes not sorry, I decided to do some type of revenge. I reported him for fishing without a license, and having a trailer with no tags. I’m not sure if he got cited or not, but the cops definitely investigated... because about an hour after my complaint I got 4 consecutive calls from a blocked number less than a minute apart.... he was angry and trying to reach me.    Im just devastated that he did this to me and doesn’t even care. He lead me to believe he cared about me
    • WilsoInAus
      Well you’re nearly there. As you say you can’t patent a natural substance such as vitamin C. Anyone can use it and develop their own product.  Nothing stopping this with your mushroom then!
    • Godcanhealme
      @WilsoInAus Another display of ignorance, here’s an example, vitamin c is found in nature, you cannot patent vitamin c, but you can make your own mixture of compounds where vitamin c is the pertinent substance and patent that mixture,  regardles though, the main ingredient is an extracted compound found in nature, or perhaps they synthesized a very close mimicking compound so yes you can patent naturally occurring compounds if you know how to make it original like the example I gave above 
    • lennyblastoff
      possibly not there are a few members on this site who got the vaccine and gpt a bad reaction to it 
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