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Posted 1/24/2014 6:13 PM (GMT 0)
hi everybody, I've been doing Iv treatment, and I'm currently on orals, I'm seeing dr F , which I feel is a blessing, but what I really want to know is, when are we expecting to get a cure for this horrible disease. we live in the most powerful country in the world and people are dying because they got bit by a tick? and I'm not talking long term abx, I'm talking that one shot, pill or whatever that cures lyme for good.
my husband, my two kids also have lyme. trust me it's not easy to process as a mother to know that your kids have this horrible bacteria running inside their system. it's heartbreaking, but I'm sure God will take care of us, He always has. But we need a cure. God bless you all.
Posted 1/24/2014 6:17 PM (GMT 0)
The problem is that Lyme is seen as a disease which is cureable with a short treatment of Doxy. And because that's what is believed, that's how doctor's treat. The government needs to fund the research to prove what our LLMD's and ND's believe to be true, and have proven with the success they've had in chronic lyme patients. I read somewhere that there was what seems to be a small sum of money allocated for Lyme research, so we're making progress. :)
Posted 1/25/2014 2:55 AM (GMT 0)
The government doesn't want to fund research, and my personal belief is that the CDC is afraid people will panic when they know that there is a serious epidemic. All I had to do was talk to a nurse at the Public Health Department, here, in NC.

Margaret
Posted 1/25/2014 3:05 AM (GMT 0)
I don't know, but I sure wish there was something. I'd take something that would make me 25-50% better and keep me there. My 6 children need testing, I was infected when I carried the pregnancies, and extended breast fed all of them. May I ask how you discovered your children have it, and as it beloved to be congential? I'm really struggling terribly right now and panicked about my kids. My 11 yr old has many symptoms, my heart is broken into a million pieces and I feel I have nobody to talk to who can begin to understand. I'm sorry your babies have it too, I know how horrible it is to worry like about what's going on in there bodies, what will their future hold regarding this. Will it keep them from having a normal life.... Like it has me in many respects. I don't mean to sound negative. How long were you sick and how did you respond to the IV antibiotics?
Posted 1/25/2014 10:51 AM (GMT 0)
I too share the wish that the funding would be put into finding a cure and preventative protocol. I look forward to seeing more comments about this.

Maine, I too have an 11 year old with many symptoms who has not been in school since late November. It is indeed heartbreaking.
Posted 1/30/2014 7:25 PM (GMT 0)
hi maine. I tested my 8 yo daughter using quest, she only had band 23, but many symptoms, and my son is igenex positive. it is heartbreaking and there's been nights when I cry myself to sleep. but then I get courage to fight again, FOR THEM! they don't have anybody BUT ME and daddy to do whatever it takes to make their life healthy and happy. speaking of "cure" for lyme, there has to be something, how come all this rich people that have lyme get better? my understanding is that Bush Jr had lyme, so what did he do?
WE NEED A CURE!!! seriously, I'm gonna make some banners and hang them all around town, I live in Houston, since may is lyme awareness month, I will pay and make some. People need to know,
Posted 1/31/2014 4:15 AM (GMT 0)
People do need to know, this is crazy. I've tried to convince myself that chronic lyme didn't exsist at times in spite of my feeling so ill, because I couldn't accept the horror that there's so little help. I am an RN and I had no clue, no exposure to this. I was likely infected as a child and have suffered in many different ways but just carried on except for when I couldn't. This is a tragic state of affairs and nobody seems to get it!!!!!!!!! What can we do????

They have so many reasons on a world wide, national, and state wide scale to not support the spread of the truth. The nations blood supply is tainted!!!!!!! People would vacation to certain endemic areas and local economies would suffer! There are so many reasons...... None are good enough though because people are dying and if not physically in every other way.

Because of a freaking bug bite!!!!!

Post Edited (Maine76) : 1/30/2014 9:18:35 PM (GMT-7)

Posted 1/31/2014 5:15 PM (GMT 0)
Exactly. People keep talking about funds, funds to do more research , to move forward with an answer to this illness, but what is the amount needed? 20 million? 300 million? I know it sounds stupid and a little crazy, but I bet you if somebody tells the lyme community that there's a light of hope, we will raise the funds, instead of trying this or that, taking meds that sometimes makes us even sicker, if it's 300,000 people with lyme and we all put $100, would it take us somewhere? Im sure there's a cure somewhere, but they profit more from us buying the meds.
Posted 1/31/2014 5:18 PM (GMT 0)
Don't know if I'm aloud to say this but they think the Plum Island research lab is where it originated, google it
Posted 1/31/2014 5:35 PM (GMT 0)
What's actually stopping the research from being done isn't the money - it's that the CDC has sided with IDSA on this. The CDC could have pushed the IDSA to revise anything they wished, but instead they decided to work together. I was active in the "Lyme world" at the time the CDC changed their site to back the IDSA.

Until this is resolved, nothing will happen toward finding a cure for a disease that the IDSA states is hard to catch and easy to treat with short term abx and that there is no such thing as "chronic" Lyme Disease. They always tell people that those symptoms are just residual - not that they are symptoms of a still active infection.

Although, Dermatologists are allowed to prescribe the exact same abx that are prescribed most often for Lyme (Doxy) and at the same dosages, only they are allowed to have open-ended prescriptions - meaning that they never run out!!! All of this for......acne. Yup! Acne!!

Anyone know of someone that had a life threatening case of acne? As bad as it may get for some (& I do feel very sorry for them as it can be disfiguring), they still don't have a life threatening disease. This is due to the IDSA and their statements about Lyme disease and the CDC backing it.

They even deny the validity of the scientific studies that are coming out that refute their ideas about this disease, and are allowed to get away with it! So until the CDC comes to their senses and acknowledges that the IDSA is wrong, we are stuck here - treating 'in secret' in many ways.

** I worked very hard to not cuss in this post!!! devil
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