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Posted 5/4/2017 4:35 PM (GMT 0)
Hi everyone, I've been lurking on this board for a while and decided it was time to come out from the shadows!

I got a bite last summer and started to have creaky/painful knees. Then I had SIBO treatment in the fall and a bad reaction to Erythromycin that put me in the ER (seizures, heart palpitations/arrhythmia, trouble speaking). Went through a slew of testing at the neurologist, everything came back normal.

Since then I've had a ton of symptoms that come and go (the majority of the symptoms listed in the "new to lyme" thread).

I had also injured my back at work and had to leave my job. Sought treatment for my back with my symptoms getting progressively worse. I didn't suspect lyme until my ND suggested testing. Elisa came back equivocal, labcorp western blot came back with 3 positive bands, and I'm still waiting on my Igenex results.

I've been treating with herbals (hope to combine with abx if my ND will prescribe). I'm currently taking Japanese Knotweed, Cat's Claw, Eleuthero, Astra Isatis (for EBV), and CSA (Babesia). I've seen a drastic improvement in the past 2 months, progress hasn't always been a straight line especially with herxing, but I'm doing much better than I was.

It's been really helpful and encouraging reading everyone's posts here, thank you!!!
Posted 5/4/2017 5:09 PM (GMT 0)
Welcome Milocat!

Sounds like you have done some good informational reading. I think we all lurked for awhile. Just to make sure this place was okay.

My Elisa came back negative from Quest labs.... Igenex had a couple of bands. I had the symptoms and that was enough for me and luckily my doctor also.

Couple of things you might want to do. 1) keep a journal. It is sometimes frustrating to not think you are healing. A journal is good to see what you have taken and how you have made those little improvements. and 2) the most important is Patience! You have to be patient with this disease as I am sure you are finding out since you were bit last summer. It is a slow process to healing and being impatient is stressful. Lyme loves stress. It is like super food to a lyme bug so don't give into it!

Welcome again and glad you joined.
Posted 5/4/2017 5:22 PM (GMT 0)
Hello MiloCat! Welcome to this very compassionate and knowledgeable group ! We are so glad you are here!

Since you are new to the site, please visit the 'New to Lyme?' thread, it's the top thread on the forum.

If you are trying to locate an ILADS ​(International Lyme & Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, please be sure your email option is enabled.

​Also, if you are looking for a llmd in your area, you can also start a new thread 'Looking for LLMD in (fill in your city, state.) Someone will respond to your request asap.

Again, welcome! Ask all the questions you need!
Posted 5/4/2017 5:26 PM (GMT 0)
Hi Milocat!
Welcome to our community!! I'm so glad you chose to become an 'official' member!!

To be honest, your ND seems to have you on the Buhner protocol, which has been proven to be very good for most people wanting to heal from these infections. Abx are not necessary for everyone, many do heal on herbs alone - I'm one of them, although I did get reinfected and am back in the fight again.
Posted 5/4/2017 6:27 PM (GMT 0)
Thanks for the welcome everyone!

That's good advice PeteZa, I started keeping a journal when I first got sick but have not kept it up, it's always good to look back, especially when keeping track of diets. I was on a super restrictive diet before, but now am only avoiding sugar, alcohol, caffeine, and soy.

I'm not currently looking for an llmd because I cannot afford to pay out of pocket, but my insurance pays for my ND thank goodness! I started the Buhner protocol on my own because I was getting tired of my doctors telling me "we don't have lyme here, no I will not do anything for you", but my ND approves of what I'm taking. I want to try abx because I feel like I've hit a stopping point in my treatment and I want to see if they can give me an extra push towards healing.

Traveler, if you don't mind sharing, what were the maximum dosages of herbs you were taking? I know everyone's different, I'm just curious! I'm taking 3x day: 3000mg knotweed, 1500mg cat's claw, 1200mg eleuthero, 1950mg astra isatis and 15 drops CSA (slowly increasing with this one phew).
Posted 5/4/2017 6:50 PM (GMT 0)
I healed using a different protocol last time (Chronic Tonic, but has a lot of the same herbs as Buhner's), but since I'm here trying to help people through with Buhner's protocol, and I believe it to be a very good herbal protocol, I'm trying this time with my reinfection - we'll see if I can stick to it or not! LOL!

Right now, I'm still on very low doses - I have serious adrenal issues, and I have to be careful to not stress my body with treatment or herxing - so it's VERY slow going (and driving me a little more nuts!).

Buhner does say that some may need higher doses and states on the website that's based on his protocol (but run by someone else) that some may need:
Japanese knotweed: 2,000 mgs 4 times a day
Cat's Claw: 2,000 mgs 4 times a day

Then it's linked to this article, which goes into a little more depth, once you get into the article. What you are looking for starts on page 5:
www.betterhealthguy.com/images/stories/PDF/PHA/2010_4.pdf

I've heard from quite a few people that the CSA can be quite potent! Do be careful with this one!

So, your ND is helping you with this? That's wonderful!!! Do you know if they have treated Lyme before? At the very least, you are helping that ND to become better prepared to help others with these infections!
Posted 5/4/2017 7:41 PM (GMT 0)
Thanks for the article Traveler. I will probably start doing 4x day after I get adjusted to the CSA (it is so strong, it gave me excruciating trigeminal neuralgia for a week).

I don't think my ND has treated Lyme before, she said she has a friend who specializes in Lyme on the East Coast and was familiar with Igenex, so I figure that's a good starting point!

Good luck with your treatment! Would you recommend Chronic Tonic?
Posted 5/4/2017 10:04 PM (GMT 0)
Milocat I healed a year ago doing Buhner's protocol. I have no idea how many milligrams I was doing. I was a drop by drop person. I did most of my herbs via tinctures. I was taking a hand full of supplements and got tired of all the pills.

It was easy for me to do tinctures 3 times a day -- even though my brain fog screwed me up on if I had or had not taken the dose. I was really suffering from an inadequate brain with lyme along with many other symptoms.

On my tinctures I got up to 2 droppers full of Japanese Knotweed and I always felt like I could have done more and more..... It really did not feel like it affected me at all.

Now my husband, who got lyme in November and is still treating, is only on a dropper and a half.... That was his maximum.

This just goes to show you how we are all different and all required different doses and it is not dependent upon our weight. Just how much our body likes.
Posted 5/4/2017 11:14 PM (GMT 0)
Welcome milocat
Posted 5/5/2017 1:44 AM (GMT 0)
Welcome, Milocat! I, like you, would reference this board a bit before joining. It has been such an informative, positive, and compassionate space. No doubt that you will receive good info. and support here. I'm amazed by the kindness and strength I witness. Wishing you well as you continue to get answers and treatment.
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