Success Story: Mrs. Paula
I’m starting a new tab called “Success Stories” because that’s what we need to hear. Success Stories! If you have a Lyme success story, please share it with me if you would like it posted here. Just copy and paste the questions you find below. You can email it to me at lymedout (at) gmail.com
Where do you live?
I live in Ontario, Canada
Where you think you were bit?
I’m not exactly sure where I was bitten because I never did see a tick or develop a rash that I remember. I have a couple of theories:
- The Pinery Provincial Park – We went to the beach there 2 summers in a row, and walked in our shorts through a grassy, wooded area to reach the beach.
- A cottage in Muskoka where we were devoured by black flies and mosquitoes. (Some LLMDs believe that Lyme can be passed on by these insects as well)
- A cottage on Lake Huron near Sauble Beach
How long do you think u were infected?
My symptoms started in Dec. 2010, but I may have been infected anywhere from 5 months to 3 years prior to the onset of the symptoms. The symptoms came on just after I went through a terribly stressful event in my life. (Which is why the doctors were attributing my symptoms to stress or anxiety! They were wrong.)
How long have you been infected before starting treatment?
I was sick for 5 months before I started my first antibiotic. That’s actually pretty good, considering that many people go years before they figure out what’s wrong with them. In that 5 month period, I was fortunate to get into several specialists: 2 neurologists, an endocrinologist, a psychiatrist, and an infectious disease doctor. Because none of them could find a reason for my symptoms, I was forced to do my own research. That led me to Lyme Disease and finding my LLMD.
Travel time to see LLMD
I travel to Michigan. It’s 3 hours from my house, so we normally stay overnight rather than doing 6 hours of driving in one day.
Years in treatment
16 months and counting. Hopefully I will be done by the end of 2012.
How you feel now
I’m feeling very good! Very few symptoms are left. I’m sleeping well once again, and have much more energy. I don’t really have any pain. The remaining symptoms are some minor muscle twitching and occasional heart palpitations, but these could be side-effects of meds I’m on. It’s hard to know sometimes.
Are you back at work?
Yes, I’m back to work! I’m a teacher, and I went back to my regular half-time job in September. I’m thrilled. I never believed I would get to this point, but here I am. I had to take 14 months off work due to the Lyme.
Percentage of recovery
Website / Blog / Facebook page
I have a blog which I find to be a great way to release the frustration I have from this whole crazy Lyme situation. I hope to help others through my experience, so I’ve included pretty much everything I have learned about Lyme Disease and treatment. The blog is: www.thelymemaze.blogspot.ca
Have u had any setbacks and what did u do to overcome them?
Yes, along the way I experienced herxheimer reactions. You can read all about them in Lymed out’s blog, and on the internet. You start or change your antibiotics, and suddenly you feel sicker than before! You start to worry that you might be reacting to the medication. Well, it is more likely that you are experiencing a ‘die off’ reaction, and your body is trying to dispose of the toxins. For me, healing was a ‘two steps forward, one step back’ pattern the whole way. At about the one year mark on antibiotics, I started to feel consistently well. That is what my LLMD had predicted. I have also read that for however long you have had symptoms prior to starting treatment, it will take twice as long on antibiotics to treat the illness.
Have u had a relapse?
I haven’t gone off meds yet, so I don’t know. I sure hope not!
How much approximately did u spend on Lyme related treatment?
- IgeneX tests – $1200 (I chose to do the basic Lyme panel, all the co-infections, and the CD57)
- Initial consult with one LLMD – $600
- Initial consult with another LLMD – $400
- Visits to LLMD every 6 weeks – Anywhere from $125 – $225 depending on how much time he spends with me. Then there are the hotel costs, meals, gas, etc.
- Medications – Covered by my private insurance, thankfully. Otherwise, they could cost up to $300 per month.
- Supplements – They probably cost about $100 – 150 per month
- Naturopath – Insurance covers some, so I pay $35 every month or two
- Counseling for a year to help me get through this! – After insurance coverage, it costs $90 – $180 every month.
It is expensive to get medical help for Lyme Disease, and it is an absolute travesty that we are paying for this out-of-pocket when we have publicly funded health care that we pay into through our taxes.
All that aside, I know that this is a lot of money, but if you are treated early, this won’t go on forever. Your health is everything, so if you need to sell a car….do it. If you need to take a second mortgage out on your house….do it. Do whatever you need to do to raise the money. As Lymed out has said, people don’t bat an eye at spending huge amounts of money on a wedding. Think of this as an investment in your health….in your life.
What advice do u give to the newly diagnosed?
Get help as quickly as possible! Lyme has similar symptoms to many illnesses, so it is necessary to rule out other illnesses, too. Get into the specialists as soon as you can. But in the meantime, send your blood off to the IgeneX lab for Lyme testing, and start your search for a Lyme-literate medical doctor. (Info on this is in my blog and Lymed out’s blog.) If Lyme is what you have, the longer you wait, the sicker you will get, and the more difficult it will be to eradicate the bacteria. Don’t wait! I can’t stress this enough.