It's been a few years since I've been around here because I gave up on Lyme treatment. I was bit by a tick in 2009, started treatment in 2011. I saw two different well-respected LLMDs for a total of three years, and I wasn't seeing improvement. I was running out of money and my second LLMD was running out of ideas so I stopped treatment in 2014.
I will say that my treatment improved my brainfog a great deal, and probably cured my babesia. But my fatigue was untouched, and worsened each year.
Since then, I have continued to decline. Each year I am able to do a little bit less. At this point I would not be capable of living independently. I need to be reclining or lying down most of the time. Just sitting upright fatigues me. I'm dependent on my aging parents, and it keeps getting worse.
Should I try again? What should I try?
My first LLMD took a more traditional medicine path - multiple antibiotics, some supplements but nothing too crazy. When he had run through all the options he offers, he referred me elsewhere.
My second LLMD is a renowned Lyme doctor based in NY who has published two books. He blends traditional with naturopathic medicine. We started out on antibiotics but I had developed severe food allergies, so we also did some herbal protocol which did nothing, no herxes or improvement. He would've been willing to do IV abx but it was absolutely out of my budget, and still is.
I was talking to someone online who recommended a series of supplements (freeze dried garlic, monolaurin, cistus tea, colostrum, nano greens, turmeric, chlorella/spirulina) but also sent me his Amazon referral links so I'm like :/
I am skeptical that it's possible to get better. But talking to this guy made me realize that I have nothing to lose. My life is slowly ending before my eyes. I don't want to get to the point where I can hardly get out of bed (at my baseline, I totally have days like this sometimes). My mental health could not take it if it was like that all the time.
I have moved a few times, but I'm currently near a well-respected LLMD, the kind with an 8-12 month waitlist. I'd be willing to try an LLND. My parents (who are supporting me) think I should try exploring avenues other than Lyme. What exactly that might be, I don't know. Chronic fatigue syndrome? Autonomic dysfunction? I have a scientific background and understand the medical field well enough that I don't think there are a whole lot of other relevant diagnoses. Doctors don't know what to do with me.
I honestly wish it was cancer or something that would kill me off rather than just steal my life away from me.
Posts: 25 | From PA | Registered: Sep 2011
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posted
I guess that's a no.
Posts: 25 | From PA | Registered: Sep 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Just saw your post biscotti,
Don't ever give up !
Don't ever give in !
My motto is fight for every breathe. Many of us at lymenet are in the battle. We are not gonna let Lyme take us out. We are strength in numbers.
We don't know what tomorrow will bring but we want to be part of it. There might be new treatments. Break through research.
Join a Lyme support group in your area. Start messaging members on their doctors and their treatment successes.
Stay in the battle, dear one 💚
Posts: 2982 | From Florida | Registered: Nov 2016
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Seeing a LLND would be worth looking into, in my opinion. They would be helpful in supporting your body so it can help fight the 'bugs'.
Sometimes it takes more support before your body can handle more toxins & die-off from destroying the lyme & co-infections.
It is a real challenge to find the right thing(s) to do.
Have you had genetic testing done? Like 23andme? That helped explain some of the reasons why things were going so bad for my hubby.
Posts: 2264 | From USA | Registered: Aug 2011
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posted
It's definitely worth looking into. I think trying an LLND or functional medicine doctor might be a good way to go in so far as it might make your parents happy that you're looking at other things.
I had Lyme for decades and am well today. I think those of us who have it a long time always have more than *just* Lyme. A good functional medicine doctor would help you sort out what's what and look at the whole picture.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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