My Lyme Story - I Could Really Use Some Insight and Support

Hi folks -

I hope you are all doing well. I am so discouraged, scared, and hopeless, I am sending out an SOS in hopes that you can make me feel better (wow, I sound like a really downer! My apologies...)

I will try to be brief with my story. In May 2015 I got a terrible flu-like illness. Went to the doctor, she said it wasn't the flu, rather a virus that my body would have to fight on its own. In the midst of that illness, my left arm became somewhat weak. My thumb and forearm would twitch every now and again, too. After I finally recovered from this terrible illness, I noticed weird symptoms popping up over the next few month - my toe would move on its own, the bottom of the my feet would be really sore, the muscles in my feet and hands would twitch, I would get nerve pain in my hands, I felt like I was vibrating inside, etc.... The list goes on and on. I was also losing more weight (unintentionally, I don't have a pound to spare, I look like a skeleton) and my hair falls everywhere, I developed ringing in my ears a few months ago, the list goes on and on...

In October 2015, I went to an LLMD who ran an Igenex test. It came back positive for Lyme, although I test negative through regular CDC tests. They wanted to do LDI as my only treatment, I was not comfortable with that so they basically sent me on my way. (By the way, I live in the woods in NJ and have 2 dogs. I'm constantly finding ticks on them, in the bed, etc...)

Fast forward to today... I am still dealing with my symptoms and am really bothered by the random muscle twitching. Two years of torture so far. I cry myself to sleep at night worried that I have a fatal disease. At 30-something, I shouldn't feel this bad. I am so so scared. I saw a different LLMD this week and he is convinced, even before testing, that I have Lyme and Bartonella. He wants to start treatment slowly so he put me on Ceftin. Then he wants to see me in 4 weeks. From all of the research I have done, I wonder if this will do anything?

I feel so alone in this, no one seems to understand what I am going through. I am really hoping that someone will reach out to give me some much needed support. I am so worried.

Thank you for taking the time to read. Take good care, I'm sending healing hugs to all

Hi BeKindPls!
Welcome to our community! I"m so glad you found us!

If 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​​

Well, it does seem that you have Lyme, as 2 LLMD's were convinced! I'm not very good on the abx (antibiotics) for treating these infections, but I"m sure someone that is will be along soon!

We do encourage you to ask a ton of questions!! We are here to help the best we can, although we do ask that you research each suggestion before you follow any, as we are all different, have different needs and different reactions to each of the therapies we use.

For the muscle twitching, since that seems to be something that's really bothering you, are you taking any magnesium? I prefer to use magnesium orotate, based on what I learned from this site: www.globalhealingcenter.com/natural-health/types-of-magnesium/

Any medicines or herbs should be started at low doses, and titrated up slowly in order to avoid or lessen herxing, along with detoxing. Some of us need a lot of help detoxing and others not so much, so you will have to find your own level of detoxing needed by your body.

I think it's really quite common to feel quite alone in this, as no one can really understand what it's like to live like this unless they have had it. My husband got infected a few years ago, and I'll never forget the look on his face when he realized I had lived like this for most of my life. He was scared too, and I understand why!

Anyway, the learning curve is steep for these infections, so please do ask questions and we will do our best to direct you to solid information that will be of help to you, or share our own experiences.

Hang in there! Life will get better!

HI again , lots of good books to get; "Healing Lyme" By Stephen Buhner

"Unlocking Lyme" By William Rawls, M.D.

"Healing Lyme Disease Coinfections" By Stephen Buhner

"How Can I Get Better" By Richard Horowitz, M.D.


I found that these books had such important information, not only about ways to heal, but about Lyme and the co infections and ways to restore/repair any damage done to your body.


Remember we understand because we have been through this or are going through this. Please post more if you have questions or just need support.
As you can already tell its a great community with lots of help available.

Take care, Jo

Keep those questions coming!! We will do what we can to be of help!

My story is kind of long, so I just put a link in the bottom of my post - at the very bottom in what is known as the signature line, so it shows up in every one of my posts, but here it is: www.healingwell.com/community/default.aspx?f=30&m=2977364 Since that time, my adrenals crashed and took my thyroid down too, and then I got reinfected, so I'm back in treatment.

You said you can't tolerate Cat's claw -could it have been a herx instead? Maybe if you tell us what happened, we can help you figure it out if you aren't sure.

I also wanted to add that diet changes have made a huge difference for me. I have eliminated all grain, dairy, sugar, eggs. nuts, alcohol, and legumes. When I get better, I will gradually add some things back in, although I will probably always continue on a basically Paleo diet.

At the very least, I would eliminate gluten and sugar. I truly feel this has made the biggest difference for me.

Also take lots of probiotics if you are doing antibiotics. Make sure you take them 2 hours apart, because the can counteract each other.

Wow, thanks so much. I have been reading all morning, you've provided such great information. What a terrible disease, it saddens me that so many people like yourselves suffer with this for so long.

Traveler - I read your story. Wow. You're the first person I've "met" who has had Lyme for years and was able to heal without antibiotics. I was under the impression that if you had Lyme for years, you needed antibiotics.

mm57553 - My doctor put me on a cleansing diet in December. I held strong for about 6 weeks but lost even more weight from it so I had to make changes. I don't eat nearly as poorly as I used to (I try to eliminate sugar, gluten, etc...). I'm hoping that diet was a good cleansing one and perhaps has my body ready for what I throw at it. She also put me on a bunch of supplements and I did IV glutathione and B complex for a few weeks. I did notice during this time that the nerve pain in my hands drastically diminished. Not sure if they are related. Anyway, may I ask your situation? Do you have Lyme and coinfections? When did you start the Ceftin? Any side effects? Are you doing herbals as well? Do you have to detox a certain amount of time away from meds? (Sorry for all the questions!)

Denise - I just read your story. You've been through so much. Your situation hit close to home in that I have two dogs myself and when I think of how terrible I feel, I worry about leaving my dogs. They are the lights of my life. So you healed without antibiotics as well? Was doxy the only antibiotic you tried?

I spoke with a doctor from Washington a few weeks ago and he gave me an herbal protocol to use. I never started out of fear and the thought that I couldn't get well with just herbs because I've been sick for close to 20 years. From what I'm reading today, I wonder if that is foolish of me. You're giving me hope. I am so encouraged by your stories and suggestions. Please don't be shy - I so grateful for all of the information you are willing to share. I look forward to hearing from you. Take good care.

A good protocol is needed no matter what you chose to use, but no, abx are not required to heal. There are many on here that are using herbs only and are healing.

There's no doubt that it won't be fast, nor will it be easy to heal after 20 years of it not being addressed properly, but that doesn't mean that you can't heal!

Choose which type of protocol(s) you wish to use and go from there. There are quite a few that also use both abx and herbal protocols to be sure everything is covered.

ChickNorris, you should put a link to your Caring Bridge page in your sig line!

Welcome, BeKindPls!


I wanted to answer your question about Ceftin. Yes, Ceftin is a good antibiotic for lyme. But mono therapy is not recommended...you will need a second antibiotic to add.
It's alright to start with one...and add the second. Maybe that is your LLMD's plan in 4 weeks.

I understand how you feel - about having a fatal illness. I, along with many others have felt that way.
I was googling constantly for 15 months...to try to sleuth out what was wrong with me.

This forum is great for support...I hope you keep reading, asking questions...that's what we're here for.

Please update us after your next appt.!

BeKindPls said...
You folks are great, I already feel greatly supported by all of you. Thank you.

Girlie - Thank you for the information regarding abx. I'm glad to hear you say it's ok to take one and then add another. Otherwise I wouldn't take just the one if it isn't going to do anything.



Did anyone have weight loss as a symptom and have a hard time gaining?I

You all are great. You really helped to pull me out of a deep hole today. I feel hopeful. A million thanks.

I'm so glad you are getting support from the forum members. I was lost until I found my way here.

I had weight loss. My first symptoms started April, 2013...and within weeks I went from 138 to 124 lbs.
(I also had undigested food in my _____) I don't know if that was part of the problem.

I held at 124 for the rest of that year, went up a pound or two in spring of 2014....and in July, 2014 I was diagnosed with Lyme. By December of 2014 I was at 130 lbs.

I continued to increase - am at 135 and holding (that's where I like to be.)

Hi there and welcome! I know you have been given a lot of great info already and as has been said - keep asking questions, there is no such thing as a dumb one, it is how we all learn!

Just to answer your weight loss question, yes I did lose a lot and I didn't have a lot to spare either, lol! Since I started to get better I have regained this but I didn't do so until I started to heal. It is 'just' another symptom.

I hope that you find tonnes of help and support on this wonderful forum!!

Welcome! Love your name. You've already received really good information to get you started. I'll answer the weight loss question. YES!!! I loss about 30+ pounds. It has stabilized and I'm steadily trying to gain. It's extremely hard for me to gain weight. There are a number of us on the forum that are in the same bind. Since all of this started about 2.5 years ago, only about a few months ago did I begin to gain some lbs. about 7-8, but I'll take what I can get.

I worked very hard to loose weight the past few years, Paleo diet, gym 6 days a week, very active outside, and was able to loose about 10 pounds in 3 years. I have had Lyme symptoms since June of last year, but still had somewhat normal life, but in January this year (when I really started feeling ill) the weight just started dropping off. I've lost 25 pounds since then, and the only change is that I'm no longer able to workout. I've had a little "meat on my bones" the past 10 years, and always tried to loose weight, but it's not very fun loosing it this way.