posted
Years ago, I promised myself that if I ever got better, I would share my success story with others.
I did get better and it has been one year since I went off medications, and I have not relapsed this time. Three years ago, I was so sick that I could not drive a car, read a book or watch TV. I suffered from brain fog and I could not follow a normal conversation or speak in complete sentences -- I would forget what I was saying mid-sentence. Debilitating muscle weakness made it a struggle just to get out of bed.
I am about 80 percent recovered, and am feeling hugely better. I am able to do more things, and hope to return to work soon. I still have symptoms, such as inflammation, physical fatigue, muscle twitching, and cognitive problems, which slow me down. But I am feeling a thousand times better, and am very grateful for it.
For those who do not know or remember me, my story is that I was diagnosed with neurological Lyme disease in 2003 following a tick bite in Montana. The infectious doctor I had consulted prescribed 3 weeks IV rocephin. I was feeling better by the end of the three weeks, but relapsed in less than 6 weeks. I was told I suffered from post Lyme disease syndrome, even though I had all the same symptoms as before.
I found a LLMD, and nine months after my Montana tick bite, I was finally diagnosed with babesiosis (the test for B. duncani came back 1:1280). Also, it became clear that my Lyme infection dated back years before my Montana tick encounter. I was treated with many rounds of mepron, but would relapse as soon as treatment was scaled back or stopped.
What finally worked for me was aggressive treatment of my babesiosis, and getting my food sensitivities under control. The successful babesia treatment consisted of rotating lariam, malarone and flagyl (in combination with an antibiotic). I would take lariam for 3 months, then malarone for 3 months, and then flagyl for 5 months, and then start over again.
Another huge problem for me is food sensitivities. Over time, I discovered that foods that had been fermented, aged, pickled, or smoked made me sick. What these foods have in common is that they have a high level of tyramine. Tyramine is a natural substance formed from the breakdown of protein as food ages. Examples of foods high in tyramine are aged cheeses, yogurt, beer, wine, vinegar, canned meats, lox, sauerkraut, pickles, ripe avocadoes, tofu, and soy sauce. By cutting out these foods, I have been able to reduce my inflammation significantly, though not completely.
When I was the sickest, I started to write a book about my own experiences as a patient with Lyme disease. In the beginning I could only write a sentence of two, but as I started feeling better, the pages started to fill. My book is coming out in February, and its title is "Sick and Tired: How the U.S. Health Care System Fails Its Patients."
Posts: 187 | From Washington, DC | Registered: Dec 2004
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posted
Great news! Its so nice to hear success stories, and thanks for coming back to share!
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Thanks for sharing! I don't know much about Lariam...is this a drug specifically for babesia or malaria? Can kids take it? Also - does Flagyl hit babs too? I thought it only hit the cyst form of lyme.
Did you take any other meds while you were rotating these three?
Thanks,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Great STory..
Keeps Hope ALive.!
THANK you 4 Sharing : )
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Tincup: Yes you can have this dance. Feel like salsa?
Lymetoo: Added my story to the success story link.
If you google ``tyramine'' you will find diets suggestions. It is believed that tyramine is a cause migraines, and my diet is similar to the diet recommended for people who suffer from severe migraines. The National Headache Foundation as diet info on its website: http://www.headaches.org/pdf/Diet.pdf
Tick battler: I took the 3 babesia drugs in combination with antibiotics: Lariam with doxy, malarone with zithro, and flagyl with ketek. I was also on diflucan for yeast, and ambien for sleep, and took maxalt for migraines.
Lariam is used for both malaria prevention and treatment. Some doctors prescribe it for babesia. The problem is that it can be very hard to tolerate and cause horrible neurological problems, such as hallucinations, anxiety and depression. There are reports of people going crazy while taking lariam. Therefore lariam is not for everyone, and people with depression and anxiety should not take it. I don't know whether it is approved to treat children.
Flagyl has anti-parasitic properties (same for doxy) and is used to treat babesia. From my own experience, I don't think that flagyl works well alone, but has to be used with other babesia drugs.
Posts: 187 | From Washington, DC | Registered: Dec 2004
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-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Great News and thanks for sharing!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks so much for coming back to share your story Walnut. It keeps hope alive for the rest of us. Will be looking for the book and can't wait to read it!!!
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
I'm always so happy to learn that someone has recovered from TBI's. Thank you for posting your story. I hope that you'll be able to return to work soon and enjoy life to the fullest!
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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