First of all, I need to thank the contributors of this website, I would have never kept pushing these doctors if it wasn't for you all!
After a year of being told you're just stressed, to you're having atypical migraines, to there's nothing wrong with you....and about $20,000 out of pocket beyond what insurance covered....I was finally diagnosed with Lyme last Friday. The conventional tests came back negative 5 times throughout the last year!
I finally found a guy who is semi-lyme literate, and did the right tests to confirm that I do in fact have Lyme. He heads up Lyme research at NYU, but he is admittedly still very conventional. I have an appointment with an LLMD in Wilton, CT. I made that appointment in February, can't get in until May! Many of you probably know who that LLMD is. While my confidence in the medical community is pretty weak, whatever this LLMD tells me to do will most likely be the protocol I will follow.
So, I have some questions.
This first doctor has me on Doxycycline 100mg twice daily. From what I read, this is probably too low, but it's a start until I see the LLMD.
Diet: What should I eat? Any supplement suggestions? I am eliminating all sugary and refined carbs. Pretty much meat and veggies, with the exception of some high fiber fruit will be my diet now. Luckily I was fairly close to this diet already for the last three months. Lost 30 pounds! I already take quite a few supplements, and am going to add the few that are in Burrascano's protocol. Turns out I was already taking about half of them....
Exercise: I read Burrascano's protocol, and see that NO aerobic activity is suggested during treatment. What should I do? I usually do some type of circuit training, but that also gets my heart rate up. Should I stick to just lifting weights and keep my heart rate as low as possible? I haven't worked out in a long time, because it has been beating the crap out of me. Any advice is welcome...
I see one of the supplements Burrascano recommends is Creatine. I know you need a pretty high sugar intake to get that to work effectively. This contradicts the avoidance of sugar. Has anyone had experience with this, and any ill effects?
Anxiously awaiting your responses!
Thanks again!
Posted by sixgoofykids (Member # 11141) on :
If you've read Dr. B's guidelines you're on the right track!
No aerobic is suggested until your stamina allows. If you have the stamina for it, then it's okay. You don't want to drain all your energy into exercise if you don't have the energy to spare. So, for now, lift weights only or do something like Pilates that has the strength training but without the cardio.
I found after years of weights, I love pilates! It works the deeper muscles, so also seems to disturb the borrelia hiding out there.
If you can find a Pilates studio near you, take the reformer classes. They are mostly done lying down, so in a sense is easier for a Lymie especially if you have balance issues. Don't let the lying down part fool you, it's a good workout, it just takes some of the work of standing out of the equation.
I never took creatine, so I can't answer that question, but I took whey protein all through Lyme treatment. A good, undenatured whey helps with detoxification.
Congratulations on a diagnosis, finally!! Welcome to Lymenet!
Posted by Lymetoo (Member # 743) on :
Yes, congratulations for being persistent!!!
If you have to have high sugar for creatine .. then skip it.
Is walking aerobic?? I would think walking would be great for Lymies. That's what I do.
the diet suggestions you made are right on
Posted by BoxerMom (Member # 25251) on :
Congrats on your diagnosis!! Pat yourself on the back for your perseverence!
Your diet sounds excellent. There are tons of benefits to a good diet (lowers inflammation, maintains blood glucose levels), but I think one of the best is that you will know when your treatment in working. Some people's symptoms are exacerbated by poor diet, then they have a hard time noticing improvement.
Don't do any exercise that makes you feel lousy afterward or the next day. Do what you can tolerate, and what you enjoy.
I never took creatine, and my treatment is going great. If you are already taking many of the Dr. B supplements, your body is probably in good shape to begin aggressive treatment.
As for the Doxy, I would consider discontinuing until you have your May appointment. That low of a dose will not do much good, and it's best to treat for Lyme and all the co-infections at the same time. Plus, microbes are more likely to become resistant to one medication. When you whack them with a bunch, plus herbs, they don't tend to develop resistance.
You are on your way to recovering your health. With all the work you have already done, and are willing to do, I think you will be a treatment success.
Keep posting.
BoxerMom
Posted by LymeXtu (Member # 24590) on :
Maybe show your current doctor the Dr. B's guidelines and the dose he recommends for doxy and see if he would double your dose? just till you can see the LLMD.