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Devastated2018

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Everything posted by Devastated2018

  1. My bloodwork was also negative but swab was positive. It means it was likely a recent infection. If you re test a couple weeks later, the blood will show positive. It is extremely rare that a positive swab test is wrong. I had a hard time accepting it because the blood was negative and I researched and asked a couple different doctors hoping for a different answer. My boyfriend is asymptamatic and didn’t know he had herpes until he gave it to me. He was tested and blood test confirmed he is positive.
  2. That is not the case for all people. It’s a very long and complicated story, but there is actually a document called “under our skin” that explains it. Insurance doesn’t cover any treatment except antibiotics for people with Lyme. But that doesn’t work for many. Not only does insurance not cover it but doctors can lose their license if they treat Lyme patients with anything except antibiotics.
  3. The doctor put me on a ton of supplements. They made me so tired that I had to sleep every 3 hours. He told me reduce them but continue. There was no improvement after a couple months and I stopped them He also suggested a hydrogen perodixe IV. It’s expensive so I hadn’t tried it yet, but I’m going tomorrow to try it for the first time. I already don’t eat gluten or dairy. I’ve now gone organic per the doctors suggestion. I haven’t cut out sugar yet. He didn’t suggest that, but I’ve read it elsewhere. If the Lyme diagnosis is accurate I think that’s what is causing my immune system to be unable to fight the outbreaks. He also ran extensive blood panels and found I had really low levels of vitamin d and b so I began taking supplements. That helps with the fatigue but not the outbreaks.
  4. It’s the only way I can sleep. I take it daily. Its legal in my state and there is a thc cream that helps the outbreaks a lot.
  5. I had near constant outbreaks for a year. After a ton of research I decided I had to have some other immune system issue. I found a doctor that ran an extensive blood panel and he found Lyme and ebv. From what I’ve read and experienced people with a compromised immune system have more frequent outbreaks. I havent found a doctor yet that knows what to do in this situation to help.
  6. I’m looking for some hope after a really bad first year. I found out almost a year ago I had hsv 2. I’ve had an outbreak almost twice per month for the entire year. I’ve heard the first year is the worst but for those that had a similar situation, when did you see improvement? Antivirals shorten the length of outbreaks but don’t stop the amount I get. Im just about at the end of my rope. Is there any hope it’s going to get better?
  7. The most helpful thing I did was track my symptoms and outbreaks. I wrote down every symptom I got and eventually learned what was a sign of an outbreak and what was not. When you first have herpes you notice all sorts of things you would’ve ignored otherwise and worry if it’s a new outbreak. If you keep track over time, you’ll learn what is and what isn’t a sign. Everybody is different.
  8. Everybody experiences hsv differently. My initial outbreak was extremely obvious and very typical, but I’ve had outbreaks very similar to what you’re explaining here. I googled everything else it could possibly be in the days between when I was tested and when the results came back. The only way to know for sure is a test. You can order a blood test yourself without a doctor that takes about 72 hours to come back. Just google std blood test. There are multiple sites that do it. If this is a new infection it might not show on a blood test yet. I know its impossible not to worry, but try to not get too worried or stressed about it until you know for sure.
  9. I’m coming up on one year since I was diagnosed. I have multiple spots where I get outbreaks. I don’t know if that is because I’m somehow getting infected in other places or if outbreaks just happen in different places sometimes. There are about 4 places where I consistently get blisters and outbreaks but usually only one spot blisters with each outbreak. If this is a newer diagnosis it could be just that it shows up in different places like I experience. I have asked multiple doctors about spreading it between me and my partner and none were able to give a concrete answer. The best I got was, “it is possible but not likely”
  10. I wish I had an answer, but you definitely aren’t alone. It will be one year for me this month and I’ve consistently had outbreaks twice a month for the entire year. The one I have now is pretty bad. Antivirals make the outbreaks less severe, but I haven’t found anything to completely stop it. For the first 6 months I told myself I could get through and it would be better. The next 6 months I told myself maybe it would be better after a year. Now I’m just accepting this may be my life. Medical marijuana is legal in my state. There is a cream with thc that usually helps outbreaks for me. If it is legal in your state it may be worth looking into. Ive also found that when I have a very stubborn outbreak if I switch to 1000 mg twice per day (given the ok from my doctor for this dosage) it will clear it up. Talk to your doctor about how high you can go on your antivirals to see if that will put it back into a more quiet state.
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