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Posted 12/26/2019 2:29 PM (GMT -5)
I have been sick since august and got a diagnosis 1 week ago with Lyme and three coinfections.(they all start with B Sorry newbie).
I went to The Dr in Maine that almost everyone from this area goes to and recommends. There are no other LLMD's around here and he is 5 hrs away.I life in Canada and he is in the USA.
Been on stomach med and probiotic for a week in prep for starting Anti malarial drugs and abx's.He gave me an initial written plan to start slow and increase for the next 13 weeks until which time I go see him again in March .Very overwhelmed and already stressed over not working and if i'm going to lose my job and med coverage etc...and not sleeping much.
Once I suspected Lyme I started cutting sugar, gluten and dairy way back and it has helped with head pressure.
My top 3 most annoying symptoms would be lack of sleep, lack of energy and depression over my illness and so much uncertainty .I have always worried in the past but now I am stressed to the max.
Please keep me in your prayers and thoughts .
Terry
Posted 12/26/2019 3:20 PM (GMT -5)
Hang in there!!
All of us have been where you are, at some time or other. Reluctant to start, because it's all so unfamiliar--and a little scary, especially since Western Medicine practitioners know SO little about it.

I've been on Lyme Borrelia and (now) Babesia antibiotic treatment since September--and you'll find it's gonna be a lot of up and down. I had my first major herx event two weeks ago (where the treatments had finally started killing Lyme Borrelia). It was NOT fun at all, but I got through it and now my LL PA has lowered the antibiotics and herbs so that I'm coping with the abx much better. I was on (fairly major antibiotics) Christmas day--and tolerated it just fine. Had a good day. My protocol, now is: Amoxycillin, Septra DS, Malarone, and the herbs Cryptolepis, Enula, and Artemisinin. Major antibiotic treatment, but we do it one day on and one day off, so my body can rest a bit in between. I also have to take some detoxing agents at times (charcoal and bentonite clay), and a couple of things for kidney and liver support (since my blood tests were showing some kidney and liver stress). And strong probiotics. Make sure that your LLMD does frequent "Safety Labs," so that he's aware of any organ stress going on.
No doubt, it's some scary crap, to most of us. But I'm looking forward to feeling better over time, and getting my energy back to somewhere near normal!
Best of luck, and you'll probably find this forum helpful! Try to focus on being well--rather than being sick!!

Post Edited (BlueRidgeDave) : 12/26/2019 1:23:20 PM (GMT-7)

Posted 12/28/2019 7:58 AM (GMT -5)
Terrym,

Welcome! Sorry you’re going through this. Dave gave some good pointers. Have you checked out the New to Lyme section at the top? There’s a lot of information there, including information on detoxing, which is very helpful and usually necessary to reduce painful symptoms and herxing. Epsom salt baths are my favorite.
Posted 12/28/2019 9:26 AM (GMT -5)
Hi, Terrym! Welcome. I hope that you find this forum helpful. Please feel free to post anytime you have questions, concerns, successes, or a need to vent or find support. Also try using the search bar to find past discussions about topics that arise for you.

We've all been where you are. This all can feel so overwhelming! Healing from these infections and the dysfunction they cause can take a long time and isn't usually linear (you will have some ups and downs). It's easy to get discouraged, especially if you do not have an LLMD that you trust and a supportive life situation. Be sure to take care of yourself mentally and emotionally with all this. It can be a slog. If you have any issues before March, then definitely reach out to your doctor. (Honestly it sounds a little weird to me to put someone on multiple antibiotics and malaria drugs for the first time, for three months, without scheduling a check-in, but maybe that's just me.)

Your top three symptoms are crappy ones, and three that I have shared at other points in my illness trajectory. Are you interested in tips for sleep? Have you had testing done for cortisol and other hormone levels? Any interest in recommendations for books or websites? Let us know how we can help. smile
Posted 12/28/2019 4:01 PM (GMT -5)
Hey, "Terrym." I meant also to say that I think you're wise to taper off/quit with the sugar, gluten, and dairy. I've been off all three (though not rigorously, except for dairy) for a few years. I believe all 3 are detrimental to our health, though they're in food everywhere. I have cow's milk allergy, but seem to tolerate goat's milk okay. Different proteins. In fact I've used (plain) goat milk yogurt for years, as probiotic. I just add a little decaf instant coffee and some stevia--and it tastes great! Sugar is bad for everyone, Lyme or not. And wheat gluten--I believe it hurts many peoples' health. A good book on it is "Wheat Belly" by William Davis MD. A cardiologist who shows (with documentation) how it's almost f'ing poisonous, for many people. I quit using oats as well, last spring, and I've had the best digestion, lately, that I've had in my whole life! In other countries, they don't consider oats to be "gluten-free" (apparently the proteins are similar). It's hard to find oat-and-wheat-free cereals, but there are some out there. As you may be aware, our GI tracts and good digestion are our first line of defense against bugs and other things. And even helpful or necessary for brain health. Keep the faith and focus on wellness!!
Posted 12/31/2019 2:08 AM (GMT -5)
Hang in!
listen to your body and support it with your continued gluten,sugar and dairy avoidance. Whenever possible... walk, even a qtr mile slowly.
Detox gently with Epsom salt baths, chlorella, turmeric and curcumin
If youre hurting with your detox regimen , then back down on your abx and herbal regimen
This is not a race, it’s a slow is better thing
You are your best advocate
Read! Tired of lyme.com is also a good resource
VCL
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