For fellow CFS community or for those on their own health path:
This list is partially complete. I will continue to update this and will add more information for immune support for those interested in learning. It is a work in progress….
Updated June 2015:
PLEASE NOTE: I AM NOT A MEDICAL DOCTOR. THE FOLLOWING IS BASED ON MY PATH AND EXPERIENCES, THIS INFORMATION IS NOT INTENDED TO TREAT OR CURE ANY DISEASE. ALWAYS TALK TO YOUR DOCOTR BEFORE TRYING NEW THINGS.
I must of course thank my amazing team of people I work with (see my first post) and my old job that taught me so much. I think for conditions such as these you truly need people that will practice outside of the box. People that aren’t afraid to do things that don’t fall in the textbook and are focused on helping their patients feel better. We don’t have concrete answers yet and until then we have to look at the theoretical stuff we can treat.
Please note, I was limited in certain aspects because of the IC. Interstitial Cystitis tends to get aggravated by many of the “good things” like B vitamins and Vitamin C, certain herbs, anything that ends in the word Acid, etc. As of June 2015, I am able to tolerate many things I could not before!
My Current Regimen/Treatment Path:
FITBIT! Using a fit bit to monitor my steps very careful and gradually increase them every week. Highly highly recommend. Has become invaluable to finding my threshold.
Dynamic Neural Retraining System (similar to Gupta)
Biomat!! (known as magic carpet with my friends and family) 20 minutes when I can. The difference in pain levels is night and day.
Meditation Everyday/Soften and Flow (Gupta) as needed
Qi Gong a few times a week
Physical Therapy exercises- half hour. Mostly pilates based, very gentle. Have also incorporated some Yoga from Yoga For Fatigue ***have graduated to light Exercise!
Gluten Free/Dairy Free Diet (and IC Friendly)
Being in a quiet, quaint environment. Getting outside every day and getting sunshine.
Reiki every few weeks from a good friend to balance energy.
On a medication for anxiety and depression that have very much helped with Sensory Overload problems (tolerating more stimuli)and sleep!!
Malerone- Anti malarial for babesia 200 mg 2x a day-now finished
Thyroid 30 mg
Methylfolate 800 mcg for methylation support
1000mcg sublingual methylcobalamin
Enhansa Cleanse (compounded curcumin for inflammation)
Lyposomal Artemisinin (babesia infection) found it to be more effective than regular Art.-finished
Byron White A Bab-20 droups (babesia) -finished
Cryptolepis (babesia) finished
Byron White A Myco- 20 drops (mycoplasma infection)
George’s Aloe Vera- has helped GREATLY with IC and GERD
Pure Encapsulations Magnesium Citrate
Vitamin D3- Immune and Bone Health
Algae based calcium-osteoperosis
Lysine for canker sores
Apex Energetics Relax Calm for sleep
Acupuncture 1x week
Things I have Tried OVER THE PAST 2 YEARS
Ambien- worked fine but started sleeping on my own after begining DNRS program 🙂
Azithromyocin- one month for mycoplasma – good for a couple of weeks but gut eventually quit.
Bactrim DS (w/the Azithromyocin – too hard on gut in combination)
Tirosint (most pure form of T4 recommend for traditional thyroid replacement- I end up with hyperthyroid symptoms but do well on low doses of T3)
Premarin (never again but that was my experience)
B-Yaz (NEVER again)
Fluoxetine (Prozac generic-fine but ended up with more side effects than it was worth within 3 months)
Valtrex (not long enough- ended up in bed quickly from 2 days worth)
Oral Progesterone (we don’t get along but some people swear by progesterone)
Nystatin (while on antibiotics and for a few weeks after)
Abendazol- helped with GI but very expensive (for potential parasite)
Mebendazol- GI side effects
Seroquel for sleep-bad depression side effects
EFT/Faster EFT: powerful tool did help with clearing old emotional issues
Integrative Manual Therapy: My favorite form of bodywork found it gave relief but mostly short term
Pelvic Floor Physical Therapy- A MUST if you have IC or any other chronic pelvic pain condition, made a drastic level in my pain levels
Neurofeedback- helped greatly with sleep
Cranial Sacral Therapy
IM Shots of Gamma Globulin: part of my doctor’s treatment and I also have a IGG subclass 2 deficiency. They were covered by insurance and are much more affordable than the IV treatments which costs thousands.Not sure if they really helped. Worth a try? Very painful. Helped with more mental stamina.
IV Push Glutathione- knocked me out for days. Too much. But some people get an amazing burst of energy from it.
Myers Cocktails- short lived energy
Amino Acid Ivs- helped with anxiety and sleep
IM SHOTS :
“Energy”- NADH, Glutathione, B12
NADH 12.5- helps with mental focus
5 HTP- lyposomal spray 1-2 sprays (<54 mg) used for a sleep problems
Prelief** a must for IC when eating possibly “problem foods”
Lyposomal Spheric Vitamin C 1,000 mg 1-3x daily (tolerable for IC- not ascorbic acid)
—very expensive but VERY strong has knocked out colds for family members with 1-2 packs in a night. Still use just not as consistently.
*Note: Lyposomal tastes awful but has greater bioavailability as it does not get destroyed by the digestive system
Ultra Inflamx by Metagenics -GREAT PRODUCT difficult with IC (many vitamins)
MSM (highly reccomend for anti-inflammatory properties)
Colostrum (highly reccomend for IC, leaky gut and immune health)
Garden of Life: Vitamin Code Woman’s Vitamin (highly recommend, 100% food based vitamin making them much more bioavailable- do not waste your money on store bought vitamins)
Cortisol Manager- one of the only things that normalized my cortisol levels.
Ultra Calm- high potency magnesium. very good at night. can be hard on GI tract.
Garlic (good for antimicrobial properites, can work as a blood thinner so may have contraindications)
Lysine- Highly recommend for anyone who suffers from canker sores or cold sores
Slippery Elm tea
Cla- K detox by Beyond Balance (definitely was great for first month)
A-myco by Byron White (herbal fomulas designed for Lyme and Co-infections)
Betanine-HCL (acid and IC=no)
Acetyl-L Carnitine- started too many things at once to really know what was what
Rhodiola- Initial energy surge and then lost
All sorts of Probiotics
TRF – Tissue Regeneration Factor- bone health
IGG 2000- brought up my igg numbers!
BH4 for methylation support (dietitian reccomendation to help with neurotransmitter levels and inflammation) temporary boost
Lipothiamine- before exercise
D-Ribose (post exercise supports the Kreb’s cycle for ATP production- your cells energy)
Branched Chain Amino Acids- afternoon to help with PEM
(did not feel need after DNRS)L glutamine, N Acetyl Glucosamine, Larch Arranigolactin for Leaky Gut
This list is longer will finish another day