I get so many requests to know what we did to recover from Lyme. It sometimes becomes difficult to keep up with the emails and I thought it may help others if I put together a summary of what we?ve been through and some of the things that we have done.
I should start by saying that I went YEARS undiagnosed. Went from one doctor, to another, to specialists, had so many zillions of tests done ? including a cardiac catheter and a colonoscopy. I can't count how many times I ended up in the ER because I thought I was having a heart attack. Still, no one ever even mentioned Lyme to me. I was at the doctor?s office so often that my doctor actually said to me one time ?So, what is the problem this week?? I was starting to think that maybe I WAS losing my mind (as he had implied by putting me on one antidepressant/antianxiety med after another.
On a daily basis I suffered from extreme fatigue, loss of balance, deep muscle pain, numbness of my face, hands and feet, severe abdominal pain, lack of motivation, joint pain (including TMJ), creepy crawly feelings on my scalp, twitching under my left eye, etc. etc. etc. Just walking out to the mail box would require a 2 hour recovery on the couch. Nothing seemed to relieve my symptoms.
I was forever online trying to find answers to my health issues. A long list of possible illnesses started popping up, but nothing really covered everything that I was going through.
I was always an active and healthy person and was declining so fast and I didn?t even have the strength to do anything about it. I was so ill myself that I didn't even realize that the rest of my family was falling apart also. Infact, I was so ill that I didn't realize just how sick I was until I started to feel better.
But then, things changed. My youngest daughter had had 2 bulls eyes on her face 3 years earlier. She was treated with 30 days of high dose abx. We were told that she wouldn?t need any further treatment. Well, she was fine after the abx and we never gave it a second thought. She was smart, active and very social. Suddenly, all of that came to a screeching halt. 3 years after her treatment, she started getting tremors, couldn?t read 3 letter words, had no short term memory whatsoever and was waking in the middle of the night is dripping sweats.
I took her to the doctor and asked if this could be Lyme resurfacing. I was assured that it wasn?t Lyme. I wasn?t convinced. I came home and started doing research on Lyme symptoms and realized that not only did she have significant Lyme symptoms, but so did my older daughter, my husband and MYSELF!
Finally, an answer! I did some networking and found a ?tick center? to take my family to. My oldest daughter and I tested positive via PCR on the first try. They found it in my urine, but not my blood. For her, they found it in her blood, but not her urine. My youngest daughter and husband repeatedly tested negative and they wouldn?t treat them until they got a positive. (we did eventually move onto another doctor and got them treatment ? and by the way finally did test positive)
But back to me?..I cried when I got the results. Not because I was sad. I was so happy to finally have an answer to all of my problems. Then I cried again because I started learning how serious Lyme is and how difficult it is to treat.
The one and only tick that I had ever had was over 20 years ago. Could that have been when it really all started? I vaguely remember being sick back then, but then continued on with a relatively healthy life after that. I also recall about 6 years ago being bombarded on the beach by biting flies. I ended up sicker than a dog. Was that it? Or was that the straw that broke the camels back? Who knows.
I was so scared and anxious to start treatment that when the doctor at the tick center said I would need to go straight to a PICC line due to my neuro symptoms, I never even batted an eye. My older daughter and I had our PICC lines inserted on the same day.
We did 56 days of IV Rocephin and oral Zithromax during that time. I had a slow, but steady improvement. Many of my symptoms had subsided, but I still had the numbness in my hands and the fatigue was slowly starting to return. They assured me that these symptoms would subside over time. I waited a few weeks and moved onto another Lyme doctor and also brought the rest of my crew with me. That is when my husband and other daughter finally started treatment.
The new Lyme doctor drew blood (which did come back still positive via Igenex), but in the meantime put me on 3,000mg Amoxicillian, 1,000mg Probenecid (to keep the abx in my blood stream longer) and 500mg Dynabac. By now I had started the beginnings of my 1,000?s of hours of research and knew that I must start to rebuild and support my immune system. While on these abx, I started taking high doses of Garlic, B-100 Complex, Vitamin C, Astragalus Root, Maitake (mushroom), Flax Seed Oil, Milk Thistle, a quality multi-vitamin, Magnesium and a multi-probiotic.
We could no longer afford Dynabac for me, my husband and my youngest daughter, so I was switched to Tetra about 2 months into the treatment with the Amoxi and Probenecid. I stayed on orals for a total of 4 ½ months. By then I knew that my abx life span had run out and that the only way to really get back on my feet was to continue to strengthen my immune system and to start cleansing all of the toxins and other junk that my body had accumulated over the years.
It was very clear to me by this point that Lyme was just one of the layers to my problems. My immune system was run down by other ?issues? that I wasn?t even aware of at the time and they needed to be addressed in order for my immune system to fully attack the Lyme.
We took everyone in my home off abx and continued to take immune boosting supplements. Then we started with a whole body cleanse. This clears out the colon, kidneys, bladder, lungs, etc. This gets the body ready for further cleanses by getting the route of departure cleared out.
Then we did a liver cleanse. Then we added in another colon cleanse because it became VERY obvious that we had more toxins being removed then our bodies could keep up with. Then we did a parasite cleanse, then back to the liver cleanse again and then parasite cleanse again.
We discovered during all of this time that Candida was playing a HUGE role in our illness. And I mean HUGE role. We cut out all garbage carbs and replaced them with good carbs, but in a low quantity.
We also started eating organic and whole foods. We thought we were relatively healthy eaters until we started breaking things down. We only eat organic, we avoid dairy and red meat and eat only organic boneless, skinless chicken breast. We don't eat anything that has been processed or preserved.
We also started using toothpaste WITHOUT fluoride. Fluoride is devastating on the immune system. We switched to just deodorant. No more antiperspirants for us. Why would we want to keep the toxins in? We only use organic shampoos, soaps, etc.
We are still getting our Candida under control and that will take a very long time. We are very aware of everything that we put in our mouths and notice a huge difference if we don?t follow a healthy diet. I am personally working on strengthening my adrenals which took a huge blow from the undiagnosed illness.
I still need to address the metals and cavitations in my mouth, but the biological dentist told me that the grand total would be $17,500. So, that must wait for now.
We have suffered financially during all of this too. We don?t have health insurance and as a result of all of the unnecessary tests, meds, etc., we had to file for bankruptcy. We are not letting that get us down. We are stronger as a family and as people individually. We feel better than we have in YEARS and are so much more aware of the little things around us.
We are about 98% better and have been abx free for 6 months now. My husband is back to his normal self, the little one is back in the Gifted and Talented Program, my oldest is a star Soccer player and I am just the happy mom/wife of my wonderful family.
I can?t stress enough that a positive attitude is probably the most important ingredient to recovery. I know how devastating this disease is mentally, physically and financially. And, it is very, very difficult to rise above it when it seems like the rest of the world is busy having a life and doesn?t have a clue what you are going through. But, you must know that deep down inside, you do have the strength and you will get your health back.