For those of you who do not know me - I will give a history of my battle with lyme disease. Mu apologies for the length of this post, but it was a long, challenging journey! Several people have asked me to share my story, since it was a while ago that I posted part of it on the forum, and there are plenty of new members on here who could use the inspiration. The beginning of this is a repeat from a previous thread back at least 6 months ago, but the rest is all new.....so here it goes......
It all started a year ago in October 2013. Went hiking - got a tickbite, didn't realize what it was, b/c there was no rash. I did have a bite, but thought it was a pimple at the time - didn't make the connection until the symptoms got severe. In November i started in with severe anxiety, weakness in my legs, depression and insomnia. Totally not me. December came and I had cystitis the entire month. I was in the bathroom about
18-20 times a day. Got scanned, sonograms, went to the OBGYN, Urologist - nothing showed. I started taking Mannitol and went on a sugar free diet and that seemed to help it improve a little. But then in January I ended up with conjunctivitis and a sinus infection. I augmentin for a week. This cleared up the infection as well as the cystitis issues. But then Two days later, once the antibiotic was out of my system, I got a flash of pain all over my joints, I was in so much pain, but didn't feel sick. It was the weirdest sensation ever. Felt better the next day. Decided to take a dip in the jaccuzzi bc it was my bday weekend. Bad idea (obviously) - the next day the migrating pains started (part of a herx, which I didn't know at the time). Then came the muscle twitches, nerve pain, muscle weakness in my arms and legs....a week following the tingling and numbness started, then the nausea and the sweats, rib pain, foot pain,....... HOLD ON!!! I was an absolute WRECK. I was 39 yrs old, mother of 3 - I could not even take care of my kids. And what does the DR do - he gives me nortriptyline bc he says I have fibromyalgia - total BS. I didn't take it. My parents and my husband both suggestion lyme. I did the research and sure enough, I just knew it was Lyme. The lyme test came back negative (just the well known ridiculous nonreliable ELISA test), and I tried to convince him that it didn't mean a darn thing but he wouldn't listen. I am a pharmacist, so I was lucky to have access to meds. Although I convinced a walk in clinic dr to prescribe doxy, she didn't give me enough until I saw my LLMD, so I helped myself to some extra where I worked (at the time).
In Feb of 2014, my LLMD who I owe my health to CLINICALLY diagnosed me with lyme and bartonella. My original tests thru stonybrook came back negative, but everything was so costly, I didn't feel the need to do IGENEx because she was prepared to treat me anyway. She continued me on doxy then added Zithromax then switched doxy to Bactrim (bc I couldn't handle doxy over the summer). I also took herbs such as teasel root, serrazymes, AL Complex, A Bart, tried GSE, but it didn't agree with me, took a handful of vitamins (D, C and Vitamin B12 injections because of the tremendous nerve issues I had), Magnesium, omega, fish oil, etc. She focused on the immune system. She said the antibiotics definitely kill the bacteria, but not alone - the immune system plays a huge role, which is why she is against giving any patient loads of meds at a time bc doing that damages the body's ability to fight on its own and causes more problems. Detoxing was also very important - I took alkaseltzer gold twice a day religiously, took epson salt baths, drank lemon water, and I took activated charcoal at night whenever I herxed during the day. I also followed the lyme diet, low sugar, gluten and dairy.
I stopped the Bactrim at the end of august 2014
stopped the Zithromax on sept 19th of 2014
Just as a side note, Instead of taking cystbusters and such (I wasn't fond of GSE nor did I or my Dr want to take Tindamax or Flagyl because of their toxicity issues) - I started magnetic therapy. The Dr literally put magnets all over me. It is supposed to "balance out" the body. It creates a magnetic force in the body that draws the bad stuff out into the
open for the immune system to fight. It also is supposed to make your body highly alkaline, which we all know lyme does not like. I herxed after both treatments (one in sept, one in oct), and felt better after each time.
I sure was nervous about
stopping therapy too soon, but my Dr was confident that it was time, and she was right. I tried to remain on just AL complex and A-Bart (byron white formulas), but they were too strong - I didn't need them anymore. I knew they were too strong bc they caused my heart to palpitate, and that did not happen while I was sick. I also gained my weight back (went from 128 to 110lbs during my illness). I then began the new balance formulas, but shortly thereafter I became pregnant (not planned), and then 11 weeks later I suffered a horrific miscarriage which set me back a bit.
I recovered from that and then tried to exercise with no luck. I was too weak and experienced nerve like pain when I tried to workout. I took a break from exercise efforts for a while, and then I decided to join my husband and do the 40 mile bike tour in NYC in May. Well, that was a milestone. I did it, and after that is when I felt normal. What do I mean by normal - I didn't feel like anything was happening with me anymore. I didn't feel lyme nor the aftereffects of it.
June came and I decided to do the 21 day fix extreme program and with that in 3 weeks I gained my muscle back and then some. I lost so much muscle mass when I was sick, so I recovered and looked even better than I did before I had lyme. I do have a leftover shoulder problem - a pinched nerve or the sort. Originally my Dr thought it was leftover nerve damage/inflammation, but now she is wondering if I injured it while I was sick. I will be getting it checked out soon - when I find the time! I also ended up with plantar fascitis from wearing sandals, which is almost healed. I do occasionally still get muscle twitches, and if I eat really poorly, I don't feel too great. Lastly, I still have a Candida issue I am trying to get rid of. I also have 4 cavities which need to be filled, and my Dr believes that once I take care of my teeth, I will have a better chance of getting rid of the Candida (A Chinese medicine theory - she strongly believes that if your teeth are not right, it will affect the balance of your body).
Am I the same person I was before lyme? Heck no. I am different physically as well as mentally. I am stronger both on the outside and the inside. It was the toughest battle I ever had to fight.
Please ask any questions you may have - I am here to help support you guys. I don't know how I would have made it through without this forum - it ROCKS!!!!!
PART 2 OF THIS THREAD WILL BE about
MY KIDS - I have 3 and they all ended up with lyme too! I will discuss this next time!
Post Edited (Chapelle) : 10/5/2015 11:00:50 AM (GMT-6)