First blog

In the spirit of trying to self-treat I thought it would be helpful to chronicle my symptoms and my treatments. I’m sitting at home, exhausted after attempting the dishes. I can’t say I’ve ever loved cleaning, but I would love just having enough energy to clean my kitchen. Never expected such wild life goals at the age of 31!

If anyone stumbles upon this and something makes sense to you, please comment! My hope is to one day figure this out and by posting my experience maybe help others do the same.

I’m going to start with a chronological list of symptoms and formal diagnoses and follow that list with the treatments I have tried.

0: Born, yay! Constant ear infections
2-4: More ear infections, non-stop amoxicillin, yeast infections
4: Trauma
7: ADHD
9: Hit by car, concussion, knee issues, the start of “stress headaches”
13-17: Lots of strep throat, mono once, food poisioning 1-3x, worked at restaurant
14: PCOS
17: Overworked, 3 jobs, college. Became sick with something bad, diagnosed as a virus. Sick for 2 weeks
18-19: Diagnosed with vertigo, nothing helped. Moved from coastal MA to a farm in upstate NY. Started birth control. Food poisoning maybe? Lots of GI symptoms. Dx with an epigastric ulcer. Heaps of cognitive issues, struggled with nursing school, lots of depression, completely tired without motivation. Started to have a lot of lower left abdominal pain, diagnosed as an inguinal hernia, surgically repaired. Start of worsening abdominal pain. UTIs.
20-21: More trauma, drugged with ketamine. Diagnosed again with ADHD, started Adderall. Started working 3rd shift. Exhaustion worsened.
22: Continued fatigue. Moved to TX. Able to manage fatigue with lots of sun, exercise, diet (hardly ate anything). Became pregnant, more exhausted than I had ever been in my life.
23: Moved back to MA. Daughter was born with IUGR, sacral dimples - emergency C-section. Dx with a septate uterus. Anemic, received blood. Got a fever treated with antibiotics. Not able to breast feed. Again, new levels of exhaustion. Cytomegalovirus found in placenta. Worked 3rd shift, able to manage fatigue with exercise and tanning. Depo birth control shot x2.
24: Moved to TX and again back to MA. Quit work. Diagnosed with CFS. Started grad school.
24-27: Grad school. More fatigue, tried really hard to manage symptoms, no improvement. Started working again 3rd shift. Moved to moldy apartment. UTIs, kidney infections.
27-28: Pregnant again. Many complications. Gained 70lbs, son born via c-section. Able to breast feed. Much harder to lose weight. No energy at all, no amount of sleep was restful. Exercise not helpful. A lot of post-exertional fatigue. Both kids with medical issues. Started working again, 2 days a week 9-5.
29: Kind of a blur. Constant exhaustion. Difficult to take care of myself. Re-started Adderall and birth control. POTS started. Moved to a new home, probably moldy.
30-31: Diagnosed with Lyme. So much exhaustion. Having body ordor for the first time ever. Stopped birth control. Diagnosed with FUT2

Constant, on-going symptoms:
- fatigue
- PEF
- insomnia
- constipation
- POTS
- intermittent, worsening L lower abdominal pain
- pain with full bladder
- increased fatigue after eating/ more energy when fasting
- brain fog, trouble concentrating
- more energy right after getting sick (day after a virus, etc)
- always cold. Blue lips if it’s less than 65 degrees. Lower resting body temperature.


Treatments that did not help:
- gluten free/dairy free diet
- GAPS diet
- Candida diet
- Candida supplements
- d-ribose
- echinacea
- herbal Lyme treatments (Bruhners herbs, etc)
- iodine replacement protocol
- anti-parasitics

Treatments that made it worse:
- cryptolepsis (migraines)
- probiotics (more tired)

Treatments that make it better (no effects have lasted more than a week):
- serrapeptase and grapefruit seed extract
- airborne tablets (only the brand name)
- Whole Foods wholemend antiviral mix
- Celtic sea salt
- exercise
- tanning/sun
- Andy Cutler Chelation (less brain fog, no help with fatigue, unable to maintain strict dosing schedule)

Comments

Never expected such wild life goals at the age of 31!
This made me smile but also sad at the same time. This disease forces us to dream small, huh? At least for now...

always cold. Blue lips if it’s less than 65 degrees. Lower resting body temperature.
I sleep under a sheet, 3 blankets (one electric set on 9--only because High is broken), and two comforters plus sometimes wear 2 pairs of pajamas year-round.

Sometimes though if I took boron on a certain day, I will have to turn the blanket off and possibly throw back some of the comforters. Just found this out recently: http://lassesen.com/cfids/supplements/boron.htm

I like your first blog. Thanks for posting this.
 

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Golightly716
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