Thanks so much for your help and encouragement, Sara! Unfortunately, I just don’t feel ok with asking for financial help with my treatment with GoFundMe. It’s different when you’re young and starting out (like you are) with your life ahead of you, but at my age I can easily get a loan for the money. People also still look at a lot of us like we’re crazy if we say we have chronic Lyme, so I’m not sure anyone would even donate. Most people I know don’t have any idea that I have it, and they have very little knowledge of the disease unless they’ve been personally affected by it in some way. Because of the weirdness with the CDC definition and the corrupt doctors involved over the years, so much misinformation is out there. The politics of this disease are unbelievable. That part frustrates me so much.
In order to pursue this treatment, I really need more proof that patients have beneficial long term effects before I would spend that amount of money, and I’d also have to convince DH to be treated since I’ll just be re-infected if he doesn’t. Another thing is that have three teenagers at home, so it’s not like we can just pick up and leave whenever we like. Taking care of yourself tends to take a backseat when you have children, and we’re focusing on saving money for college tuition right now. If it were just me, or if my children were suffering with Lyme, I’d be at St. George in a heartbeat.
I just need more proof it works long term. I’m so happy that you’ve had success with this! I really need to know that more people, especially people my age, have had results before I can commit to it. I guess I’m waiting to hear more about
it. Treatment results with this disease vary so widely from person to person. This disease needs so much more study, as do treatments for it. I’ve been signing petitions and writing emails to the Working Group to help make this happen.
I’m still very interested in hearing more about
this, so please keep including me in this discussion. I’m following your Facebook page.
My LLMD continues to treat me with herbs, supplements, and ozone saunas though. (The ozone saunas are supposed to be even more effective than the infrared which I used to do a few years ago.) I’m looking into doing vitamin C IV too. I’m not giving up! I wish I could continue with antibiotics, but after almost a year pulsing with them, my body just couldn’t take it anymore. I felt so good at the beginning though, almost like I’d gotten my life back.
Keep fighting the good fight and putting your information out there. It’s very good for ALL Lyme patients when someone young and intelligent like you can be out there battling in public for us. Thanks for being so vocal about
your disease and your treatment. It really helps all of us in the long run.
I keep telling myself that someday I’ll be able to go. Please continue to keep us informed! I really appreciate all that you’re doing!
Sara Mulhern said...
My goal, once I get my college degree is to help bring this treatment to other countries. I fought long and hard with the disease and as a healthy educated woman, I will fight even harder to get people the information and treatment they deserve. Fundraising and preparations are crucial and I was very fortunate and blessed. I mentioned in another response I will be making a video discussing questions brought up in this thread and through my facebook messages. Keep fighting don't give up, and start fundraising!
18,000 dollars... I converted it from euros.
There's a place I found in Arizona that treats with biophotons. I have to research it more.
I herx if I take a really hot bath. I've never been over 103 F in the ozone sauna.
I heard back from St. Georg about long term results. They have no info to share, but apparently there's going to be some research done in Boston on the treatment. I hope that happens soon and that it gets FDA gives approval here if the data proves that it's effective long term. The treatment price PLUS overseas flights is really over the top for something that may only last a year or so.
Then there's always the idea of getting re-infected. My lifestyle is such that it's always possible, especially if it's also transmitted by mosquitoes like my LLMD believes.
I need to check out what noodles are! That's another term I've never heard!
Thanks again, Jinna!