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I haven't been on in awhile. I have been really busy with school (5 classes this semester!) and the kids. I changed my major becuase I really wasn't doing well with the math and science necessary for medical. I have been very passionate about writing and literature ever since I read Great Expectations when I was 6 or 7 and just placed that passion on the back burner. Writing truly makes me happy so I switched my major to Literature and creative writing.
I wanted to go to Med school to help get the word out about AP and I was really torn between pushing through to do Med school anyway for that reason alone but my advisor told me that she could tell from talking to me that my passion lies in writing. She also helped me realize that I could still get the word out by writing. Amy Tan for example has Lymes disease and is an advocate of treatment for it (she has a whole section on her website dedicated to Lyme disease and her experience). So that made me feel better, I could still help get the word out and do what I truly love.
I am currently working on my degree and trying to get one of my manuscripts out there for representation. I have been feeling well up until recently. I am taking 100 mg of Mino MWF for SD. Lately I have noticed that my shortness of breath is worsening and I'm wiped. I have an appointment with my cardiologist in a little over a month. I am really scared that it could be PAH or PH or some type of cardiac involvement.
I hope you are all doing well and I feel like a jerk for not coming on the board more regularly but I have been stretched so thin with school (I know, it's a horrible excuse!)
I would love to hear form any of you that I used to speak with and anyone I have yet to meet. I hope you are all well!!
momof:
Glad to see you stop by and I am happy to hear that you are able to be so busy with normal life. I am sorry that you have been experiencing some added symptoms lately. The shortness of breath could be many things, but you are wise to have it fully checked out, just don't stress by thinking the worst until you get teh needed evaluations and know exactly what may be causing these new symptoms.
That said, what I would do in your situation.
1. Consider with your doctor adding another antibiotic. Many people have needed a combination of antibiotics to deal with their disease. Dr. Brown used combinations of antibiotics.
2. Consider testing for Lyme through Igenex Labs. Not that this is a scientific observation, but I believe that here on the RBFBB, 100% of the SD patients tested for Lyme have come up positive. Again, purely anecdotal, but, in my opinion, worth paying attention to this information. Additionally, at my appointment with my LLMD, he mentioned that ILADS is looking into what they see as a strong connection between Lyme and Scleroderma. I know it may not be Lyme, but if you have Lyme, then minocin alone is not likely to be fully effective, you may need other combinations of antibiotics to address the specific infections of Lyme and company.
3. I know you have some great goals and I support your intention to get through college, BUT, 5 classes? That would be alot for a perfectly healthy 20 year old who is a full time student. With a family, including young children, you may need to reconsider the course load you undertake. I know it would take a little longer if you took fewer classes, but you don't want to drag yourself down through the process. Take the right amount of units that will still allow you time to take care of yourself, eat well, play with the kids and not burn the candle at both ends. Setting good limits on what you expect from yourself may turn out to be the main thing that you need so that you can achieve your goals. You are young, you have time!
Cheryl
Hey Momma, so nice to hear from you again. I was wondering how you were doing. 🙂
Wow, you are busy! 😯 I don't know how you can do it all while you're not feeling well, but kudos to you for plowing through.
I couldn't agree more with Cheryl that you should do the Igenex Lyme test. Lyme triggered my SD and RA and in treating the Lyme, the other conditions remitted. You live in a Lyme endemic area and will have access to Lyme docs. Lyme tx is very different than AP, requiring a whole arsenal of different rotating abx and at much higher doses. You can use the “search” button because we've had many discussions on the procedure for ordering the test. If you'd like the list of LLMDs in your state we can send that to you.
If you've stalled out with your current protocol after this long it's time to change it up.
Take care…..kim
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