Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Doing my daily tour of the worldwide web I've come across a ton of people who just don't have any options.
Since January I was trying a lot of stuff. Fish drugs. Vitamin regimens, GSE, Ebay abx, Vitamin C to tolerance, changed diet, gluten free, high butter diet, MSM.
I did not go on a standard herbal protocol and did not understand rife so I never went down that road. The first thing I did eight months ago after a massive herx ( had no idea that was what was happening) that convinced me I was dying, was go to lots of doctors to rule everything else out.
Everything else was ruled out.
I finally found an LLMD and I don't think there's any doubt in my mind at all that I have Lyme.
This was a massively difficult process. I'm still exhausted from it and not any better really. But at least I got that far.
BUT.
When I go online I see people everywhere who believe they have Lyme or who obviously do who are stuck and have no options at all. They cant get abx, they're too sick to find someone to help or they have no insurance at all or no money, or they're nowhere near any medical personnel who could possibly help them.
So what is there to suggest to these (probably huge numbers) of people?
Buhner? Cowden? Cheap out of country doxy?
I think we know there are going to be more and more patients of this type, right? Where to send them, what to say?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
There's now a foundation, the Lymelight Foundation, that is helping to fund Lyme care for children and young adults age 26 and under, that young people can apply to for financial assistance.
But there doesn't appear to be any funding organization for adults past the age of 26 that I'm aware of. There's one piece of it covered - www.lymetap.com will cover 75% of costs for IGeneX testing for those who are low income.
It's a huge problem, but let me ask you this - where would all the money come from or how would it be raised to pay for the millions of dollars that Lyme care will cost for adults? Any ideas? It's not an easy situation.
That's why many try to treat as cheaply as they can, and many are, with herbal treatments and supplements.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Actually that's what I'm asking about.
Immediate, low cost helpful treatment anyone could start right away during the one to three years everybody is telling them they don't have Lyme.
I'm thinking Buhner is the best way to go because it can be very inexpensive. It might not *cure Lyme* but it can at least stop people from getting worse while they find help.
Socially and politically I agree, huge problem. We already know two people who've sold everything they have to move and live near their treatment clinic. But that's another discussion.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Buhner's books are very good to read, too. The 1st one is "Healing Lyme." Good explanations and treatment discussion. He's come out with later writings too.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
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Member # 45305
posted
I agree but I wish he'd do a kindle version.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
What did your visit to the LLMD show? If he doesn't think you have lyme, what does he think is causing your symptoms? Did he do any other testing?
The MSID's model by Dr. H may be useful in your case because he said that there could be multiple causes for why a person is chronically sick with lyme being just one of them.
This journey can be very frustrating. My PCP said to me once that patients want a diagnosis but sometimes there is no clinical diagnosis for what is going on.
He wasn't saying that a patient is not having symptoms or "it's all in their head". What he was saying was sometimes the medical profession doesn't have a name for what is happening.
Posts: 538 | From kentucky | Registered: Nov 2011
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Jordana
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Member # 45305
posted
Hi soccermama:
I had my second visit with the LLMD today. He said that even without serology I was certainly describing symptoms of Lyme neuroborreliosis and we're going to treat it according to the latest literature -- mino and tindy.
He doesn't believe in endless herxing/misery so dosing gets adjusted according to how I'm feeling.
I'm happy with this. Even if it's not Lyme, a rational dosing schedule of antibiotics won't kill me.
Speaking of that, I know there are really broke people out there who can't afford to see an extra doctor but this guy is really reasonable and the drugs aren't expensive either.
I see now why people say over and over again that going to see a LLMD is absolutely essential.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Im happy for you ...please let us know how you progress. Have you started the scripts?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I went to go get them and they're OUT!!!
I have to wait until tomorrow.
Blue I just wanted to tell you I started regular Buhner dosing with Japanese Knotweed and it really makes me feel better somehow. None of my symptoms are objectively better except I don't have the burning in my bladder and my eyesight is a lot better. Also the sweating seems to have calmed down a little.
I think it just protects from the inevitable damage you're going to get with a raging chronic infection. Talked to doc about this -- it especially protects the brain and central nervous system, probably all epithelial cells.
Unless you have outright allergy there are no side effects.
Something to consider. Posts: 2057 | From Florida | Registered: Feb 2015
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Jordana i havent been following your story but buhners stuff helpd me a lot for a long time. I made tea frim the herbs so it was really cheap.
Now i understandvabout how a mold history can prevent lyme tx frim working and i am.working on that
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks Ipkayak.
I really didn't believe in herbs when all this started a year ago. I thought they wouldn't be strong enough or something to get this stuff out of me.
After a while you realize there's a lot more to it .
And Buhner is definitely the cheapest way to go.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I'm happy for you that the first consultations were positive.
Posts: 109 | From The Netherlands | Registered: May 2014
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Thanks Notti.
Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Jordana, You are just starting out with Lyme. You have posted very recently that you're not even sure if you have it. You are just about to embark on treatment, so you don't have personal experience yet with any type of treatment.
Given this, I don't understand why you would try to suggest to other people what they should do for their Lyme.
You have a lot on your plate right now with starting your own treatment. I can see that you are trying very hard to wrap your head around this Lyme stuff. After a while, I am sure you will be in a good position to help others.
And I want to reassure you that I don't mean this unkindly. You have posted elsewhere that you are having a really hard time with this emotionally. So take the "saving the Lyme world" off of your plate for now, and focus on your own recovery.
Posts: 1737 | From Virginia | Registered: Aug 2011
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