My story

It is long.

January 25, 2016.
I was bit April 29, 2015. I was bit as I collected tablecloths from a luncheon on a concrete patio. Dogs and cats had rubbed on those tablecloths and those dogs and cats roam the forest. I had a red circular mark on my arm that evening. I thought it might be a spider bite or “something.” The bite mark did not itch but it lingered on my forearm for 3 weeks. This very unusual for me as I am generally a rapid healer.

June 20th my girlfriend and I went to Costco and she says I complained of a neck ache on that day.

June 23rd I got head pain. Try as I may to explain to anyone that it wasn’t a headache, no one listened. I refused to call it a headache because I have had headaches all my life, including migraines, and this was not like that. It was at the back of my head, behind my ears and it was horrible.

I was diagnosed with a sinus infection and given meds. I was told it was stress and given muscle relaxer, I was given narcotics and still nothing. Then my ears got plugged up and I felt different. Not really sick, but definitely not well. I was given a brain scan to rule out tumors even though pressing on the spot where my head hurt did not cause any pain. Brain scan was negative. My husband had proof that I had no brain (get it? negative brain scan, family joke).

I finally got on the internet and started to do my own research. I took Horowitz lyme questionnaire, Burrascano’s questionnaire, and numerous other lists of symptoms and check marked each item I had. My conclusion was that I had been bitten by a tick (which I never saw) and had lyme disease.

I went to my doctor and asked him to order a lyme disease test. I knew so very little about lyme. He sent me to Quest labs for the Elisa and it came back negative on July 27.

My Internal Medicine medical doctor suggested that I go to a neurologist. I went to him on July 30th and I still was thinking in my mind “lyme.” The neurologist ordered me 3 MRI’s. Oh and this doctor said the weirdest thing. He said “you don’t get a headache with lyme disease.”

I went home and researched some more. I was very confused. I was getting mixed messages. I cancelled all 3 MRI’s and told the neurologist that I would not need him as my doctor. I decided on finding an LLMD and on August 18th this LLMD started me on Ceftin (at my request because it was summer and I was swimming a lot and did not want to have something that made me hurt in the sun) and Biaxin.

I had an Igenex test and was not CDC positive, but had 2 bands say yes. Only 30 days of antibiotics. Sept 10th I went back to this LLMD and I was again asked a silly question. He said “what do you want to do now?” How the heck did I know? I thought, “I need another doctor.”

I searched and found another LLMD on Sept 28th. I told this doctor (from my research) that I wanted to do what his wife did when she was diagnosed with lyme, I wanted herbs. This doctor gave me Beyond Balance. I was given no instructions on how to take them, my mind was all foggy and I went home with 2 bottles and $100 less.

I continued to go to this doctor but he was more concerned with my blood pressure. It was high and erratic. Pulse was all up and down. More research on my part. I took these Beyond Balance herbs and felt like I had plateaued after another $100. I asked my LLMD what I should do now. He said that he would call the Beyond Balance company and see what I should do next. That was not a confidence builder and so AGAIN more research.

I added motherwort on Oct 1st because of my heart concern. Then I added Cat’s Claw and Astragalus. I had taken these before for illnesses and so I knew I could take them at full dose. I added Hawthorn. I did this one slow. One drop 3x’s a day to start. I got it up to full dose probably more quickly than most.

Nov. 8th I started Japanese Knotweed. In my notes I have written “Oh my gosh I feel like I am going to heal.” I tried adding Eleuthero and my heart tached very high, so I quit. I tried adding Sida Acuta and I got butterflies in my heart and quit that one. I then added Red Root. I am doing Buhner’s herbs, but not Buhner’s way. I am letting the herbs become synergistic at full dose. I am not slowly titrating them like he says. Red Root sure gave me relief. And then Cryptolepis. Oh my gosh the head pain is gone!!!! But I misread thinking it said only take this for 30 days and so I quit. Head pain is back and ears plugged again. I re-read my notes and re-read books and discovered that the herb was supposed to be taken for 30 past the life span of a red blood cell – duh!

I have felt “normal” for 2 weeks currently and while feeling normal I have added Hout. And all this time I am still taking Beyond Balance. I feel well, but I am so scared to announce this without knocking on wood. I am back to my normal life minus some exercise and that I will do this week – maybe just lifting soup cans and riding my bike. I plan to stay where I am for a week trying out the Hout and then I will go with Andrographis. We will see. It is about the only thing left in my cupboard. Well that is not entirely true. I think I went gunho and bought everything to begin with. I know I will take my current herbs at least until June just to be careful.

I think the thing that has made my journey take less time is I acted on my illness pretty quickly. I also am a healthy eater prior to lyme and my immune system was in good shape. I don’t like sugar things (except wine) but maybe once a month a ginger snap cookie and I am satisfied. We don’t do much white food in our house – bread, pasta, rice. I have to put my sourdough bread in the freezer or it will go stale before a loaf is eaten. We love vegetables and we eat salmon 3 times a week at least and some other fish (wild caught) the other days. We do not eat hamburger. We switched to Bison. Maybe once every 2 months we have a nice steak. I love beans and can eat them all the time. But my favorite is garlic!! Breakfast yesterday was a organic russet potato baked, grass fed cow butter unsalted (just a tad for the sweetness) piled high with Wallaby’s organic plain greek yogurt (highest in protein yogurt I can find) and 5 cloves of organic garlic chopped and sprinkled all over the top and then a pinch of Himalayan pink salt. And we do a lot of fermented foods. Even if it is just a dill pickle for a snack, or a couple of spoons of sauerkraut, or a bottle of Kombucha.

Anyway this is my story up to this point.
I found I had to be my own advocate. I know what I am feeling and the doctor isn’t inside me feeling this. I can tell what is working and what is not. With the internet, I am so very grateful. And with prayer. I cannot tell you how many people prayed for me and I know this made a difference.

I feel guilty for putting this out there because I know so many are hurting and have hurt for a long time. Just know you too can heal. I hope this in some way helps anyone reading this. I do know that it is a journey and I am not done. But I have found it is an individual journey. What works for you, may not work for me and vice versa. And I am not a guru of lyme disease. I barely scratched the surface of learning about this disease. All I know is what got me here and that is so very little compared to many others on this board.

And to CD, thank you for telling me that putting this out there might help someone. And a huge amount of gratitude for being so very encouraging to me always. It would have been easier to curl up into a ball. You helped me believe in my abilities to get well and I cannot thank you enough. You helped me to know I could do this. Even when I was doing it MY WAY, you never lectured me or once made me feel wrong. Your belief in me saved me. Thank you is not enough words. What a lovely heart you have. <3

Happy Healing to All.

~Annette

Ya gotta love doctors today. Throw some narcotics at it and it'll be fine. I wonder why we have so many accidental addictions these days.

I can relate in that I knew my initial symptoms were something different. I remember telling the first jackass (sorry, I mean doctor) that I know my body and this wasn't the usual seasonal virus. My opinions were ignored and that gave the infection ample time to burrow itself in.

Annette !! First, I want to commend you for taking things into your own hands so quickly into your illness and for standing up for yourself and putting in so much hard work towards healing. Give yourself a pat on your back!! It's so sad that we have to be our own advocates and doctors when dealing with this disease, but I think it only makes us stronger in the end.

Second: I am so so happy for you!! It's wonderful news to hear that one of our members is fully healed!! How awesome is it to have your life back and to feel like normal again! I crave this and look forward to the day when I'm feeling like myself and can do the things I was doing before I got sick. Big big hugs to you!! Thank you for sharing your story and giving us hope. I feel like I'm at the beginning still but I have hope and faith that things will be better.

Faith in God or anyone really is what keeps us going. He doesn't let anyone down.

Now go out and celebrate!

Hi PeteZa!-

Thank you so much for sharing your story!

What wonderful news to hear how well you are doing!!! :) I am so happy for you!!! :)

I hope that you continue to heal and gain energy more and more every day!!

P.S.- Thanks for the giggles about "negative brain scan". My husband and I joked about this also after I received a "negative ". Ha ha ha!! :)

Best Wishes and Continued Healing!

Thank you so much for sharing your story! Hugs and prayers for long lasting wellness!

Thanks for sharing and helping us to see there is light at the end of the tunnel and it isn't a train! God bless you!

Jan 26 and Jan 27 I am calling my senators and my representative. I have to tell them how important Senate Bill 1503 is to lyme sufferers!!! Anyone need more info, email me ASAP.

I did as well!! I'm going to bug them again tomorrow since there is a large push for this!

Thanks CD and I called them today from my home phone and will call them tomorrow from my cell. Just so they think I am a new person. LOL!!

A Senator from Connecticut is the creator of the bill. That so makes sense since Lyme is in Connecticut.