Bedbound and housebound with ME/CFS, somewhat better after colostrum and mould detoxing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I was diagnosed with CFS/ME , POTS , etc. ( and completely disabled ) by Dr Charles Lapp
In context ↗ - At worst: Severe
I went from bed bound / house bound to being able to attend my sons graduation
In context ↗ - Now: Somewhat better
still struggling much worse off than before the last crash
In context ↗ - Began after: mould or toxic exposure
Fluoroquinolone antibiotics are known to cause mytochondria damage and my health crashed horribly from avelox 2009
Read from 28 of their posts and comments; links to the 19 this page draws on
Summary
They dated their decline to fluoroquinolone antibiotics from 2009 and never bounced back after COVID in February 2020, which added POTS; at worst they were bedbound and housebound. From spring 2023 they credited ARMRA colostrum, mould detoxing, chelation and gut treatment with slow improvement, and after about two months on colostrum they attended their son's graduation. By February 2024 they still felt worse than before the 2020 crash.
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What they tried
What they credit
Also tried
Their words about each treatment
- Fluoroquinolone antibiotics ( Avelox , cipro and levaquin ) · Much worse
Fluoroquinolone antibiotics ( Avelox , cipro and levaquin ) cause horrible long term adverse reactions for me.
In context ↗ - Adderall and Vyvanse · Much worse
Looking back, the adhd meds gave me “fake” energy and I believe played a huge part in my disability.
In context ↗ - chiropractics · Helped
I’ve always benefitted in multiple ways from chiropractics
In context ↗ - functional medicine · Helped
In the beginning of my illness, functional medicine was beneficial to me .
In context ↗ - Shoemaker protocol · Not said
I started on the Shoemaker protocol with a doctor in Asheville NC , but then had to move back to AL, so I wasn’t able to continue on the protocol.
In context ↗ - detoxing mold / mycotoxins (binders) · Helped
my health IS improving by detoxing mold / mycotoxins and chelating heavy metals and healing my gut.
In context ↗ - chelation (oral agents and IV chelation) · Helped
I chelated with oral agents but they must be taken based on their half life
In context ↗ - zinc · Worse
I was doing a protocol to chelate heavy metals and I was taking 50 mg of zinc daily.
In context ↗ - mirtazipine · Helped
I take mirtazipine for sleep ( low dose ) and it seems to help with the fight / flight too.
In context ↗ - melatonin · Not said
I also take melatonin and Mag glycinate & Mag threonate at bedtime.
In context ↗ - tart Cherry juice · Helped
Sometimes tart Cherry juice helps.
In context ↗ - NAD+ IV · Helped
I had NAD+ IV previously and I no longer felt 90 yrs old after getting those.
In context ↗ - TruNiagen · Not said
I’m taking TruNiagen currently.
In context ↗ - pacing with frequent rests below HR threshold · Helped
My CFS expert told me to take frequent rests, away from noise & activity. And to keep any activity below my threshold of HR 102...
In context ↗ - BioBody PC , sodium butyrate and SBI protect · Not said
using binders and taking BioBody PC , sodium butyrate and SBI protect to try to heal my gut
In context ↗ - ARMRA colostrum · Helped a lot
The colostrum has been a game changer. I went from bed bound / house bound to being able to attend my sons graduation ( although it wasn’t easy ) after just over 2 months using ARMRA.
In context ↗
Approaches: Alternative therapies · Mould avoidance · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 14.1 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2009 | Health crashed after fluoroquinolone antibiotics, with later partial bounces backmy health crashed horribly from avelox 2009, leveaquin 2012 and cipro 2017 & 2018In context ↗ | Not stated | |
| early 2023 | Bedbound and housebound at their worstI went from bed bound / house boundIn context ↗ | Severe | |
| May 2023 | Able to attend their son's graduation after about two months of colostrumI went from bed bound / house bound to being able to attend my sons graduation ( although it wasn’t easy ) after just over 2 months using ARMRA.In context ↗ | Moderate | Lactoferrin and colostrum |
| July 2023 | Slow improvement from detoxing mould, chelating heavy metals and healing their gutmy health IS improving by detoxing mold / mycotoxins and chelating heavy metals and healing my gut.In context ↗ | Moderate | Mold avoidance / CIRS protocol |
| February 2024 | Still worse than before their 2020 crash, working on mould and gutstill struggling much worse off than before the last crash.In context ↗ | Moderate |
Adverse events
- Ciprofloxacin (Cipro), Levofloxacin (Levaquin)“Fluoroquinolone antibiotics ( Avelox , cipro and levaquin ) cause horrible long term adverse reactions for me.” In context ↗ Side effects
- Ciprofloxacin (Cipro), Levofloxacin (Levaquin)“my health crashed horribly from avelox 2009, leveaquin 2012 and cipro 2017 & 2018” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“Vyvanse allowed me to push way past my energy envelope at the end ( because it had started giving me fake energy ) … I’m 4 years out from my last crash … still struggling much worse off than before the last crash.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall), Lisdexamfetamine (Vyvanse, Elvanse)“After COVID 2020, I could no longer take them bc they made me so jittery/ horrible feeling.” In context ↗ Side effects
- “After making a timeline of my health crashes, it became clear that the MRI with gadolinium really messed me up.” In context ↗ Made symptoms worse
- “I now have cognitive impairment and burning all over my body and I’m disabled. Thanks gadolinium.” In context ↗ Other
- Zinc“I was taking 50 mg of zinc daily. I believe that’s how I tanked my copper.” In context ↗ Refeeding or deficiency problems
- “Yes, I’m completely disabled now. Don’t try it .” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Vyvanse allowed me to push way past my energy envelope at the end
In context ↗ - Brain fog
I now have cognitive impairment
In context ↗ - POTS & dysautonomia
I never bounced back and added POTS to my diagnosis.
In context ↗ - Sleep problems
I’m currently taking mirtazipine at bedtime to help with the insomnia.
In context ↗ - Gut problems
I was having pretty severe gut issues and tried so much to help the gut
In context ↗ - Neuropathy & tingling
burning all over my body
In context ↗ - Headaches & migraine
my full head / sinus issues that stated 25 years ago
In context ↗
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