New, hopeful, overwhelmed

I would appreciate any input. I've suspected I've had Lyme for years. I grew up in tick paradise where one of my weekly chores was de-ticking our dogs. Nothing like finding a grape sized tick you missed, blech! For over 30 years I'm always sick, everything hurts, too many things to list. Doctors haven't been much help and wouldn't discuss the possibility of Lyme (am no longer in tick paradise and they don't think it's a thing where I live now). The closest I've come to a doctor calling all my issues more than severe allergies is one who said I had mono when I was 12 or 13.

I thought the only option was getting antibiotics from a doctor. I don't know what finally pried my head from my hiney, but I started searching for things that could help with Lyme symptoms. Then I stumbled on ways to treat it naturally. One of the first things I found was a discussion about a MTHFR gene mutation on a Lyme forum. The gist was it can mess up your immune system it seemed like a good place to start. Found out that if you have the MTHFR mutation and throw down a full dose of either, it can be quite ugly. Took a few weeks to start over with very low doses (lesson learned, but can't promise it'll stick), and it is helping quite a bit now. YAY!

Then I started with monolaurin (445mg caps), milk thistle and cat's claw. I was already taking probitiocs, multi, omega 3, garlic, maca, ashwagandha. One monolaurin a day made me feel like I had the flu for a few days. After a week and a half, I started taking two. It's been three days feeling like the flu again, with random strange things like a sore armpit, stiff neck and heartburn. I'm trying not to be discouraged or feel like a giant wuss. I understand what a herx is, but you can get that much reaction from such a small amount? I'm still freaking out because I've seen people say to take 3k to 9k of monolaurin, at the rate I'm going I'm not sure how long it will take me to build up to that much.

I also noticed two great things that I hope aren't just flukes. Would it be too soon for there to be improvements? Despite feeling like I have the flu, the last few days I haven't had one back cramp. I've had those for years. I've also been able to sleep more than two hours and without waking up sweating or freezing. I haven't been able to do that in over 20 years and I haven't hit menopause yet.

Part of me wants to laugh/cry/jump up and down because I finally feel like I'm on the right track, like like there is actually light at the end of the tunnel. Am I just being an idiot? Am I doing enough as a starting point or do I need to add things? I've gotten a little overwhelmed with all the info, even the notes I've taken are confusing me at this point. Help?

HI Niarosa and welcome to the forum!

I am sorry to hear that you aren't well, and that the docs you have seen haven't been much help, I think many here can relate!!

OK, so first of all I would recommend that you read through the 'New to Lyme' sticky thread at the top of the posts page as this has a wealth of information on testing, protocols, detoxing etc that you would find useful.

Secondly if you want to begin looking for a Lyme literate doctor (LLMD) you can start a post entitled 'Looking for an LLMD in...........' and put in the name of your nearest city. We can't post doctors names here but if you enable your email folks will be able to send you the info directly.

I tested my genetics via 23andme and spent a lot of time looking into the effects of the detoxification genetic mutations (since I am a walking mutant, lol, and detoxing is VERY important,) so if you have any questions regarding this I will do my best to explain what is what, testing, protocols for addressing problems etc, if I can.

You are certainly not being an idiot,rest assured, it is all very overwhelming to start with but the folks on this forum will certainly do their very best to help and support you and answer the piles of questions that I am sure you have (I did, lol) and never think there is a 'stupid' question, there is no such thing!!

Hi Niarosa,
Welcome to our community! I'm so glad you found us.

I​f you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

​It does sound like you *may* have been dealing with yeast issues right now with the monolaurin - although it has also some effect on Lyme as well. Just something to be aware of.

As Silly Sheep said, please do not try to push through a herx, as it can turn dangerous. Herxing is a sign that your bloodstream has more toxins that your body can easily clear before causing issues.

Also as Silly Sheep indicated, it's not that unusual to herx off of small amounts of things for us. There are some that don't herx hardly at all, but the majority do herx, and there is a minority that herx quickly and easily off of most anything - I'm in that last group too.

Keep reading and keep asking questions! That's what we are here for!! To help you through this the best we can.

Welcome Niarosa! Yes, you can herx on small amounts, what is large to some people is tiny to others. Yes, you can have favorable reactions in a short period of time, then plateau for a while. Or bounce from feeling great to feeling that death is imminent. The most consistent symptom is inconsistency. Which leads to feelings of and diagnosis of mental imbalance. For some (most?) of us it actually is pathogen induced mental imbalance. The sleep disorders and sweats/freezing also point to babesia. Since 90% of us have multiple simultaneous infections, your having more than one pathogen is quite likely. Once a successful therapy is found for you - all successful therapies are individual - the symptoms will diminish. The catch is that the longer you have been infected, typically the longer that treatment is required. But your mileage will likely vary, all of ours do.

Sounds like you are hitting some infections with those types of reactions/symptom improvements!

I would say definitely look into babesia if you are having frequent night sweats. I believe mycoplasma pneum can also cause sweats.

Just wanted to tell you welcome too!

Niarosa I was goofy excited when I found out I had Lyme and Co.

Finally, answers and treatment options to get moving in the right direction! You have found the best group of folks here.

Hope you feel better

VCL