I know it’s been awhile since might last post, but I’ve been going through alot of treatment. It’s hard to write when you feel crappy. I’ve been off antibiotics for a couple of weeks. My LLMD wanted to see what symptoms I have off the drugs. It’s been nice not taking so many pills. My joints and brain are doing better, but my fatigue, stomach and eyes are still crappy. Come a long way, but still have some ways to go I think.
I have been doing the Myers coctail. I think it’s helped a little. Well see how it goes the more I use it. We’ll I’m starting to run out of brain power so I’m going to sign off!
My first impressions when I heard about Twitter is, that I don’t get it. It seemed stupid and a big waste of time. What it the point of twitter, besides letting stalkers know where you are. Time past and I forgot about the huge technology craze on the World Wide Web. One day my dad asked me how to set up Twitter, because a bussiness associate requested him. I rolled my eyes and went on there. I signed myself up so I could tell my dad how to do it. He went on there for awhile, got bored and went back to facebook. lol
By me signing up, I got hooked. I started following a bunch of celebrity, venting on there when I was upset and talking about my causes. This includes of course Lyme Disease. This is a great platform to get Lyme Disease out there, so I’m now hooked on Twitter. Why?!! lol. It really is a good place to have a voice. For someone who hated Twitter since it came out of the wood work, I completely recommand it!
Saw my LLMD today with my mom. So discouraged right now. She found alot of viruses got re-activated in my body because of the Lyme. The doctor also found that I have a stomach parasite, which would explain the extreme weight loss. I feel like I’m such a hot mess right now. I have to take more meds too, and will also have to do penicillin shots 3 times a week. When does this get easier?
This has been such a long haul, and it seems to be getting worse in different ways. I wish I had an end date to all of this, so I know when my life starts up again.
I went wikipedia to see what the site says about Lyme Disease and in it, it lists the celebrities who have it. The most famous out of all of them is Ben Stiller and yet I have never heard of him having Lyme Disease. With all of the celebrity that he has, he chooses to keep this disease private. He has the opportunity to help and change the way Lyme disease is handled, and yet he does nothing. I’m so upset and frusterated with these lazy celebrities who have Lyme and choose to do nothing. There are so many of us who try to get Lyme disease out there in the public eye, but we get shotdown or are left unnoticed! I wish I had his email to give you guys this time, but I couldn’t find it. You can still contact Karen Allen on my previous blog about her. If someone has his email please pass it onto me, so I can post it on here. If I do get it, please be respectful in the letter.
I wish I had better news than this, kinda depressing. Stuff like this makes me feel so discouraged. I wish we had a celebrity who would fight for us.
Because of Lyme Disease, my dad has eye problems and has to go in often to get his eyes checked. My dad was telling him how he has Lyme disease and to my dad’s surprise, he knew about it. The eye doctor said they’re getting memos sent out to all the specialist saying if you’re having trouble diagnosing the eye problem, give them the Western Blot test. The western blot is still not a 100%, but at least this is a big step. I was excited to hear about this. We still have a long way to go, but I thought this was a positive step in the right direction.
I tried to find out which organzation sent this memo out but couldn’t get a definite answere. It wasn’t the IDSA or the CDC. If someone finds out, please let me know so I can update my blog, thanks!
I’ve had to learn the hard way on what’s the best way to help your digestion. It got so bad I had to go to the e.r., which didn’t help at all. I’ve never had this problem before, so I didn’t know what to do. I took toxic stuff from the doctors that had active ingrediants equivalent to water coolant in air conditioners. I also relied on ax-lax that the colon doctor said I would probably have to take for the rest of my life. I brokedown in his office right there when I heard that. That stuff is really bad on your body long term, so you think an expert would have other ideas. Mind you, this was before I knew I had Lyme disease, so I thought I was slowly dying. My body was slowly shutting down for no reason. Then my mother and I went to Florida to see a world renown doctor. Towards the end of my appointment, he suggested a natural way to help with my digestion. It’s a powder called, “Calm.” For me, it didn’t cure the blockage, but it keeps things moving. I think because I didn’t act quick enough with the Lyme Disease, I’ll have problems with my digestion for the rest of my life now.
You start with 1 tsp once a day in hot water(needs to be warm water to activate live ingrediants). Let it fizz, then stir. You hold your breath and drink. If you feel it’s still not helping, up it to 2 tsp’s. Because I have so much blockage, I have to do 2 tsp’s, every other day taking Magnesium and 1 month to have a colonic done.
I have found this is the most natural way to do it, especially long term. I hope this helps someone, I sure could of used this a long time ago. Take care Lyme People!
Normally I would write a little and give links that inform Lyme people, but the UFC is on so I can’t write too much at the moment. lol. I thought it was at least important to give you this link. Please check it out.
I found out yesterday from one of my support groups message boards that Karen Allen has Lyme Disease. For those of you that don’t know, she was in Indiana Jones and Superman. She made a radio appearence promoting a thing called, “The Ultimate Zapper.” She claims it can cure Lyme Disease. I find it hard to believe, but to each his own. What really made me mad was that this celebrity has Lyme Disease and doesn’t promote and raise awareness about it enough. Lyme disease is usually musseled by the media and having a celebrity talk about it would really help us. Shame on her for not talking about it. She does a one time appearence on a low budget radio show, that barely anyone listens to and thinks she helping?!
Look at Jenny McCarthy with Autism, she has been a pioneer for it. She has gotten it out there in the media and raised awareness about it. It just makes me so angry because for the rest of us it’s hard to get Lyme Disease out there in the public and media. If I had that celebrity I would be talking about it all the time in the media and trying to raise money for it. I wish I could shake her and say please help us! For those who would like to send a polite and respectful letter to her asking for help, you can contact her through this email. email@example.com . Please, Please be polite. We would like her to help us with Lyme Diesase awareness.
Her Radio interview
Take care Lyme people and lets make a positive difference in the world.
Thinking lastnight on how I want my life back. Before Lyme took over my body I used to be very smart and had a little bit of a photographic memory. Now I can’t even remember what I had to eat yesterday. I want to finish school and do alot with my life. It’s just not fair how life works out.
Hopefully this medication will improve my life. What if it’s just a little bit and I’m stuck like this? These negative dialogs in my head are not useful, but it’s hard to stop them from seeping into your head. It’s hard to be stuck in limbo, which alot of Lyme people understand. Then on top of it, we get called crazy or depressed. I just wish I could think of something to get chronic Lyme Disease recognized and the process of getting a cure going. Sigh. Dare to dream.
Take care my Lyme people and hang in there. This disease sucks but we will fight it.
So the IDSA finally reponded. They denied everything, which is not unexpected. I’m still sad by there continue efforts to block Lyme advancements. This is another slap in the face, but one day they’ll be known as the black cloud over Lyme Disease. Here is there full response.