FINDING A DOCTOR
Finding a practitioner who understands and treats chronic illnesses can be a huge and frustrating challenge. It held me back years in my healing journey. Referrals from friends in your community, and in the chronic illness global community, can save a lot of wasted time and money, but you also have to trust your intuition. We all respond best to different treatments. Here’s some suggestions from what has worked for my illness:
Center for Complex Diseases, Drs Kaufman and Chheda, San Francisco. Specializes in CFS/ME, mast cell activation syndrome, and autoimmune illnesses that are poorly defined.
Biotoxin Illness: Mold Illness Practitioners, Map of Mold Literate Doctors, Lyme Literate Doctor Referrals (there isn’t currently a public list of LLMDs that I know of), Shoemaker Certified MDs (this list isn’t very updated, but a place to start), Trillium Integrated Medicine, Bozeman MT. Dr Robin Thompson
Bioidential Rhythmic Hormones and other supportive therapies: Three Rivers Medicine, MT
. Dr Buffy Binder.
General autoimmune, thyroid, etc: Helios Integrated Medicine, Boulder CO. Dr. Pierre Brunschwig
Head Injury Rehab: Neuroagility, Boulder CO. Kerri Honaker
SUPPLEMENTS & MEDICATIONS
Here are some treatments that were effective for my condition and might be worth asking your doctor about. Use your intuition and definitely consult with a professional before taking any new medications. Even herbs and vitamins can be dangerous in combination with certain supplements, prescriptions, or ailments.
Biotoxin Treatment: I spent about a year and a half trying out the Shoemaker Protocol, and did see some significant improvement. Considering the expense and effort and the fact that I'm not sure I couldn't have achieved the same results just with time and good diet/self care, I'm not positive I'd recommend this route. I did find the initial blood work and testing very helpful however for giving a clear, biological explanation for many of my symptoms. I have a feeling as research progresses, they will find more effective treatment options for chronic lymes and mold toxin exposure, so I'm going to stay involved with this (and probably stay on CSM and VIP).
Hormone regulation - bioidentical rhythmic hormones have really reduced my monthly setbacks. Estrofactors by Metagenics & DIM have helped me in the past with estrogen dominance. Magnesium & fish oil seem generally supportive of hormone balance. I've had pretty bad luck with all of the bc pills I've tried making symptoms worse, and my body did not tolerate an IUD.
Candida Treatment: Diflucan/fluconazole and Nystatin, along with probiotics, garlic, oregano oil, & grapefruit seed extract (you can get the last four items in a product like Solaray Yeast Cleanse) have been very helpful in the past, but can be risky to your liver and pretty quickly lead to antibiotic resistance. Avoiding sugar/carbs is really key to these other treatments working.
Epstein Barr Treatment: Mountain States Health Products Epstein-Barr Virus Nosode (I was skeptical about this, but noticed a difference). Vitamin B injections, Chinese Skullcap, & Vitamin A. Honestly, nothing other than time and patience has made a big difference when the virus flares.
Colds and infections - Raw garlic, Kick Ass Immune, & colloidal silver (science is really mixed on the safety and effectiveness of silver, so please be careful)
Urinary Tract Infections - daily zinc and bioidentical progesterone are key preventatives for me. D-Mannose (amazing), lots of lemon/cranberry juice, & AZO (for pain)
Adrenal Fatigue: Fatigued to Fantastic Adrenal Stress End seems to make a bit of a difference
Insomnia: I'd pretty highly recommend yoga nidra for insomnia. Not perfect, but the best of the meditation techniques I've tried for sleep. Integrative Cortisol Manager in the evenings for sleep plus lots of GABA and some melatonin before bed.
Mood: GABA (different people have different neurotransmitter deficiencies, but there are several online quizzes you can take to narrow it down). Dopa Mucuna (am) & 5HTP (pm) are supposed to help serotonin production, and made a small difference I think. I also used a common antidepressant (I think lexapro?) for 5 years after my concussion, and found it pretty helpful
DIET & NUTRITION
Our bodies are really complicated and unique. Finding a diet that works best for you can be a long journey and there is no one right answer. Keep in mind that dietary restrictions are really hard when you’re already ill and stressed out (maybe hypoglycemic and menopausal too), so don’t beat yourself up. We all backslide and fall off the wagon. Anyway, here’s what has worked for me;
Cutting gluten and dairy has helped significantly. As time goes on, I seem to get more and more sensitive to these foods. While I used to be able to enjoy gluten and dairy now and then, I get pretty intense GI reaction if I "cheat" now a days.
Cutting sugar was a big step that was very difficult (omg so hard) but gave me a huge improvement in symptoms. I also feel better if I avoid sugar alternatives like honey, maple syrup, and most fruit.
Avoiding (mostly) grains like corn, oats, & barley and heavy starches like potatoes, seems to help. Rice, quinoa, and legumes in small quantities don’t seem to give me any trouble.
I work hard to only buy organic products and only grass fed, organic meat, but sometimes that’s just too hard, and I don’t drive myself crazy with it.
If you have a lot of food sensitivities along with your chronic illness, a elimination/cleanse diet can be helpful. I’ve done the paleo autoimmune diet a few times, and it’s helped a bit, though no miracles to report here. Some people have amazing results with this diet and I’d highly recommend this website for recipes and great information on treating autoimmune disease:
Allergy testing can be extremely helpful for dialing in a healing diet for some folks. I'm looking at doing a test through Cyrex labs. I've also done a skin test and the ELISA blood allergy test in the past but honestly, neither gave me very useful results.
You yourself, as much as anybody in the entire universe, deserve your love and affection. Gautama Buddha