Posted on Jan 4, 2014 in Blog |
I talked with a few Lyme patients yesterday. People call me asking for input, my perception, advice, or just validation.
A few things I find myself often saying:
I’m not a physician and I don’t know what you have merely by you telling me your symptoms. I don’t know what treatment you should be getting or what meds you should be taking. I can only share my experience. But that doesn’t mean my experience will work for you.
No, I don’t know how you got infected. I can make some guesses, but that’s all they are; guesses.
I will tell you that after having cats for 50 years, I will never get a cat again because the risk of re-infection of Bartonella is too high for me. It’s not something I am willing to go through again. Yes, cats can be successfully treated for Bartonella, but they can become reinfected again with the next mouse or shrew they catch.
I don’t know which symptoms necessarily go with each co-infection. I had symptoms for 30 years. Some are better now that I am clear of Bartonella, but some are the same or worse. They might be symptoms of Bartonella AND Protomyxzoa Rheumatica. I don’t know. And honestly, in the end, I don’t think it matters. With the development of incredible testing these past few years, I think it is better to rely on solid data for diagnosing co-infections.
Galaxy Diagnostics (www.galaxydx.com) is the world’s best lab for testing for Bartonella. The three day blood draw is 90% accurate and they will PCR the blood and tell you what strains of Bartonella you have. No more guessing.
Fry Labs (www.frylabs.com) in Arizona is the best for finding that pesky Protomyxzoa Rheumatica and its variants. The PR 1953 panel is very enlightening. You will see the buggers light up. It’s quite remarkable.
If your LLMD says he doesn’t have time to do research and to keep up on the latest data, find a new LLMD. This field needs our best and brightest to keep researching, to keep trying new things. What worked five years ago is NOT what should be used now. More information is being uncovered weekly, literally.
The protocol that my physician used 4 years ago to cure me of Bartonella is not what he is using today.
What he started me on two years ago for PR is not what he does now. Treatment is constantly evolving and improving.
If you are too afraid to try a drug, don’t try it. Someone has been emailing me about a drug that she is afraid will make her blind. No matter what I say, or what anyone else says, if you are that fearful, then don’t do it. Mind can take over and that drug probably won’t work for you. I don’t think this drug will make her blind, but I don’t think it will be as effective for her as it was for me.
When I was supposed to go on a specific drug that causes major fatigue, I was terrified. I was supposed to start it in February when my business is pretty busy. Dr. M immediately heard the fear and said, “We won’t start it until you are ready.” I started it July 5th of that year and it worked. But the patient has to buy into the process as well. If you don’t believe it will work, it probably won’t.
Physicians need to talk to physicians. I understand that many patients are trying to figure out what works for one another, but it is the physicians who need to be talking to one another. Encourage your physician to connect with other LLMDs.
Patients respond to drugs differently sometimes. I’m on an anti-parasitic drug right now that is kicking my ass. And has been for months. One other patient and I are having a really tough time with this drug. Other patients take it and it’s like candy. No big response. But we are getting better after each dose, so we just have to take it more slowly than other patients.
When I started on Tindamax, I was nervous because so many other patients I knew had a huge response to it. It did nothing for me. No side effects, no herxes, nothing. Everyone is different.
There is no one miracle medicine.
Do NOT go off your meds without FIRST talking to your physician and developing a plan. It’s the going on and off antibiotics that can make treatment extremely difficult for you and for your physician. Don’t leave him/her out of the loop! You need to work as a team.
You CAN heal. Don’t let anyone tell you differently. I know people who have healed, who have no residual effects, who are leading “normal,” healthy lives. It IS possible. I know how much better I am today and I plan to be one of those “normal” people in 2014.
But if you don’t believe you can heal, you will not heal.