Although I have improved from being moderately bedridden to working (seated) 5 hours a day + an occasional 2-3 hour seated activity outside of bed (1-2x a week), please take what I write below with a grain of salt (and be sure that I do as well). These improvements are over the course of 2.5 years, and while they are there, they are mind-numbingly, frustratingly slow. So it's not exactly a testament based on years and years of improvement and a full recovery. But I DO slowly keep improving with minor to no setbacks (knock on wood!) and since I strongly believe in information sharing for all this and how beneficial it can be, figure I'll write up everything I'm doing/taking right now.
Although everything listed below I'm actively on top of, I haven't always been doing it all. It took 2 years to build to this point, because I found it difficult to keep everything in mind and I just plain didn't have the energy for a lot of it. But as I'm getting my strength back, I'm able to add more to my routine every year. In terms of the supplements, I'm not sure exactly which work since I take so many, but they were prescribed by my doctor. I definitely know the meds are working. Any suggestions/comments would be welcome if you have experience with any of the below or have tried other things you found beneficial!
#1 way to achieve any improvement (in my humble opinion!!): REST!
- I liken this whole healing process to getting a deep cut/wound. If you keep picking at it, it'll never heal, and slowly scar over the way it is. But if you leave it alone and give it time(and in this case, lots of it), it'll have the opportunity to heal.
- It's the same with this. I feel like I overloaded my system and made it crash because I kept "picking at it" and pushing beyond my limits. By resting, I feel like I'm finally giving my body a fighting chance to heal itself.
- Stifle that instinct to go-go-go! Yes, it's a lovely day to take a walk, and yes it would lift your spirits, but the after effects are so awful that it's not worth it! Once you get used to controlling your impulses to DO, it's much easier to say no to things, and fun (but exhausting) activities look much less appealing.
Health Care Practitioners I see:
- Holtorf Medical Group, Torrance, CA -- I see an endocrinologist there. They combine western and alternative medicine to make SUPERmedicine :) They are kind of amazing...
- T3 (hormone replacement therapy for the thyroid. prescribed to indirectly decrease my elevated reverse T3 levels; theory is that; essential to kick start your body out of its rut)
- Gamma globulin injections (at home, once every 1-2 weeks. I feel wonderful, albeit small and incremental improvement whenever I do them; they act in place of the immune system, giving it a chance to rest and rebuild)
- Low Dose Naltrexone (stimulates opioid receptors to release chemicals, supposedly helps boost immune system though its unclear how it works)
- Doxycycline (antibiotic for the Lyme, started April 2012)
- Suprax (antibiotic for the Lyme, started May 2012)
- Amantadine (antiviral that also acts against the cystic form of the Lyme bacteria, started May 2012)
- Ridiculous amount of DHA/EPA Omega-3 capsules
- 600 mg Magnesium (my labs show that I'm deficient)
- 10000 IU Vitamin D3 (tests show I'm deficient)
- CoEnzyme Q
- Vitamin B12
- Supplements made by the Holtorf Group (Mitochrondrial support, heart support, muscle support, antiviral/immune modulators)
- Iodine (low iodine levels in body, thyroid can't function as well)
- Transfer Factor/Transfer Factor Lyme- boosts natural killer cell activity for improved immune function
- Oxymatrine (sephora root)
- Smilax (anti-Lyme, helps alleviate Herx reaction, detoxes liver from all this stuff it has to process)
- Burbur detox (detoxes body, liver in particular, to help drive toxins out, especially in getting rid of dead Lyme bacteria)
*all things I find beneficial and notice some sort of boost/improvement after*
- Circulation is increased and more oxygen and nutrients are brought to the muscle and other systems
- Stretch 2-3 times a week, with a week off here and there. Noticeable change.
- Restorative Yoga Video I use (pick and choose easiest stretches to start with, helps with pacing and breathing): Yoga to the Rescue - Feel Good from Head to Toe
- I strongly believe (from personal experience) that if stretching is started off slowly (ie start with 1 min, laying on back, light stretching) and gradually and built up while in tune to your body's reactions and needs, that this can help sustain improvement over time.
- Stretching while laying down is best because if you have a high pulse rate (orthostatic intolerance) like most people with CFS do, you get to stretch muscles without putting pressure on any muscles to work hard and support you and also without increasing your heart rate
- I also find it immensely helpful, in any form. Once I started feeling a tiny bit better, I found that I could do 5 min or so a couple times a week to myself on my arms and legs without doing too much detriment in terms of wasted energy. Or ask a close family member to help as well.
- Improves circulation as well! It feels quite nice afterwards.
- 30 min a day in the sun
- Though that's the goal, I am hardly ever able to do this
- Any amount of sun though helps I've found. Increases Vitamin D3 + helps put me in a better mood + *supposedly* has healing/antiviral/antibacterial effects
- Either way, I feel a tiny bit better after
- Fresh air
- My theory is that my body somehow doesn't get enough oxygen; something's broken?
- So the more fresh air we breathe the more oxygen can hopefully get to fuel important bio processes in the body
- When I sleep with the window open, I feel like my sleep is deeper