ME/CFS
Severe → relapsedIll 13 years before improving or writingNeeds ongoing treatment
Bedridden before ME/CFS, improved on SPM-Active, then relapsed to mostly housebound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 13 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I have post lyme syndrome that turned into CFS.
In context ↗ - At worst: Severe
But I’m still moderate. I was severe.
In context ↗ - Now: Relapsed
it only worked for three months ... But now I’m back to sick every other day.
- Began after: a bacterial or tick-borne infection
I have post lyme syndrome that turned into CFS.
In context ↗
Read from 95 of their posts and comments; links to the 46 this page draws on
- Jun 2022
- Nov 2022
- Mar 2024
- Jun 2024
- May 2024
- Jun 2022
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Summary
Pebble 99607 was bedridden with Lyme disease for months before it became ME/CFS, and has been ill for over a decade. IV antibiotics, weekly deep-tissue massage and the supplement SPM-Active each brought gains, SPM-Active letting her walk a mile daily without PEM. That benefit faded after pacemaker replacement surgery, and perimenopause set her back. She is now mostly housebound.
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What they tried
What they credit
liposomal glutathione· Helped a lot · wore offCOVID vaccines (Pfizer)· Helped a lot · wore offtestosterone injections· Helped a lotIV antibiotics and injections for Lyme· Helpeddeep tissue massage· Helpedcordyceps· Helpedmethylated B Complex· Helpedcalcium d-glucarate· Helpediron infusions· HelpedDNRS· Helpedprimal trust· HelpedBenadryl· Helpedwheelchair· Helped
Also tried
SPM-Active· Helped a lot · wore offAdvaClear· Helpedsuper bio-curcumin· HelpedIV vitamins (Myers cocktail)· Helpedprogesterone cream· Helpedsleep hygiene and light management· Helpedmagnesium glycinate· HelpedL-theanine· Helpedmelatonin· HelpedFormula 303· Helpeddeep belly breaths· HelpedPepcid· HelpedToradol· Helpedliposomal vitamin C· Helpedbiaxin· No changehomeopathy· No changeLDN· Worsepacemaker· Worseprednisone· Much worseNeuroStim· Much worseCBD (Charlotte’s Web)· Not saidPaxlovid· Not saidbreast implant removal· Not saidHeart Syrup· Not saidMedical Medium protocol· Not saidsauna· Not saidAtivan and diazepam· Not saidAtivan and diazepam· Not said
Their words about each treatment
- prednisone · Much worse
they put me on prednisone and it made me go crazy after several days so I stopped it but the damage was done
In context ↗ - IV antibiotics and injections for Lyme · Helped
I treated Lyme disease for several years and it helped a lot. IV antibiotics and injections. Some oral.
In context ↗ - LDN · Worse
The last time I tried LDN again (years ago) it caused what felt like an explosion in my gut.
In context ↗ - deep tissue massage · Helped
Eventually I found a deep tissue specialist and could get affordable 90 minute deep tissues massages every week. It helped SO MANY THINGS!
In context ↗ - liposomal glutathione · Helped a lot
For years I swore by lipsomal glutathione but after 8 years, I found out it was backfiring on me. But it was a miracle for me for many years.
In context ↗ - CBD (Charlotte’s Web) · Not said
I take CBD (Charlotte’s Web) before bed. I think it may help me sleep?
In context ↗ - cordyceps · Helped
I didn’t notice anything right away but noticed over time I had more stamina.
In context ↗ - methylated B Complex · Helped
I also take a B Complex and I have estrogen dominance so I take calcium d-glucarate. All of these help me with energy.
In context ↗ - calcium d-glucarate · Helped
I have estrogen dominance so I take calcium d-glucarate. All of these help me with energy.
In context ↗ - AdvaClear · Helped
Calcium d-glucarate and AdvaClear both seem to help me with detox.
In context ↗ - super bio-curcumin · Helped
For joint pain and inflammation super bio-curcumin by Life extension.
In context ↗ - NeuroStim · Much worse
It sapped me of all my energy store after several treatments and I was set back with fatigue majorly.
In context ↗ - COVID vaccines (Pfizer) · Helped a lot
I did amazing after my first 2 COVID vaccines also. Like a new lease on life but still symptomatic.
In context ↗ - IV vitamins (Myers cocktail) · Helped
Not unless I get vitamins in them. Like a Meyer’s cocktail. Then I have some energy just for that day.
In context ↗ - Paxlovid · Not said
I had this experience as well on Paxlovid. But I only took 2 doses because everyone warned me about rebound COVID from Paxlovid.
In context ↗ - SPM-Active · Helped a lot
My doctor put me on a supplement that tells your immune system to calm the f down, I suddenly had no pain and could walk a mile per day.
In context ↗ - biaxin · No change
I believe I had it and took biaxin for it years prior and it didn’t improve my health in any way.
In context ↗ - breast implant removal · Not said
I got my breast implants removed.
In context ↗ - pacemaker · Worse
When I got a pacemaker put in the weakness I have worsened.
In context ↗ - iron infusions · Helped
Mine is always low and I get infusions. When my ferritin is HIGH I feel my best and strongest.
In context ↗ - testosterone injections · Helped a lot
I’m doing testosterone injections myself and they’ve been life changing.
In context ↗ - progesterone cream · Helped
I did some low dose progesterone cream before bed and that helped me sleep and took the hot flashes away after 3 days.
In context ↗ - DNRS · Helped
I did DNRS (it’s a limbic system retraining program) half ass for about a month and it helped me a lot.
In context ↗ - primal trust · Helped
I moved on last year to primal trust and it started helping me
In context ↗ - sleep hygiene and light management · Helped
But changing my sleep habits and waking up at a more normal time and getting enough sleep keeps me moderate.
In context ↗ - magnesium glycinate · Helped
I take those every night and the twitches stop.
In context ↗ - L-theanine · Helped
L-theanine 200mg (keeps me from waking early)
In context ↗ - melatonin · Helped
If I miss the melatonin I won’t sleep.
In context ↗ - Formula 303 · Helped
Since I started this I no longer have severe weekly back spasms.
In context ↗ - Benadryl · Helped
I take benedryl so I don’t wake so easily. It has made the biggest impact on my health.
In context ↗ - Heart Syrup · Not said
So I take something called Heart Syrup someone recommended for me before bed.
In context ↗ - deep belly breaths · Helped
I also do some deep belly breaths with slow exhales. Sometimes I can’t even finish 3 before I’m knocked out.
In context ↗ - Pepcid · Helped
When I take a Pepcid it goes away.
In context ↗ - Toradol · Helped
Toradol pushes when I get cold/flu IV’s when I have a virus are a godsend.
In context ↗ - liposomal vitamin C · Helped
I started liposomal vitamin C one day and it went away. When I stopped the C (because it was flaring the gastritis I have), it came back.
In context ↗ - Medical Medium protocol · Not said
I tried to do everything he “prescribed” for me to do but I had told him I could not tolerate juicing
In context ↗ - homeopathy · No change
Homeopathy hasn’t really helped me though but I know others that swear by it
In context ↗ - sauna · Not said
I had heat intolerance with Lyme but I could do a sauna.
In context ↗ - Ativan and diazepam · Not said
I can physically addicted to Ativan FAST years ago so I’ll never touch it.
In context ↗ - wheelchair · Helped
It really helped push me a little.
In context ↗
Approaches: H1 antihistamines · Alternative therapies · Antibiotics · Brain retraining · Pacing · Sex hormones · Supplements · Vaccination
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | Lyme disease onset; bedridden and unable to eatWhen I first got sick (Lyme disease) I really couldn’t eat. No idea why. Just no appetite.In context ↗ | Severe | |
| — | IV antibiotics for Lyme got her out of bed after monthsMy first injection of antibiotics saved my life, I swear! I was out of bed in 48 hours for the first time in months after a big herxheimer reaction.In context ↗ | Moderate | Lyme / co-infection protocols |
| 2013 | weekly deep tissue massage; back to business meetings and hours at the officeI was able to function at a much higher level. I’d attend meetings for our business weekly and could stay at the office for 5 hours.In context ↗ | Mild | |
| — | six weeks of energy after second Pfizer COVID shot, then fadedI did all the things by myself. Drove my car everywhere. Went shopping by myself everywhere!In context ↗ | Near normal | COVID vaccination as treatment |
| April 2022 | crashed after a cold; worst fatigue in yearsI just had a REALLY bad cold with body aches and tachycardia ... now the fatigue is the worst it’s been in years.In context ↗ | Moderate | |
| June 2022 | COVID: four days of symptom relief, then old symptoms returnedThe first 4 days all of my CFS/ME symptoms were GONE! ... The 5th day the fatigue set back inIn context ↗ | Moderate | |
| summer 2022 | NeuroStim vagus treatments set her back and she never recoveredIt sapped me of all my energy store after several treatments and I was set back with fatigue majorly.In context ↗ | Moderate | |
| January 2023 | SPM-Active: no PEM, walking a brisk mile daily, most pain goneFast forward about a week or so and I was walking briskly a mile EVERY DAY!!!In context ↗ | Mild | |
| 2023 | backslid after pacemaker replacement; SPM-Active stopped workingI had a surgery to replace a pacemaker and I slowly backslid.In context ↗ | Moderate | |
| 2024 | perimenopause brought more muscle pain and fatigueI recently hit perimenopause and fell off the hormone cliff and that’s been rough.In context ↗ | Moderate | |
| 2024-05 | mostly housebound; walks around the block, short weekly grocery tripI am mostly housebound. I can walk around my little block.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“I had the typical immune reaction the next day but felt sicker than I did after the second shot.” In context ↗ Side effects
- Vagus nerve stimulation“It sapped me of all my energy store after several treatments and I was set back with fatigue majorly.” In context ↗ Made symptoms worse
- Pacemaker“I had to replace my pacemaker and since that surgery I haven’t been great and I am in bed a lot more.” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“The horrible taste in my mouth though. That was very difficult to handle.” In context ↗ Side effects
- Clarithromycin (Biaxin)“Years of antibiotics destroyed my gut and I do believe that’s why I am here.” In context ↗ Gut side effects
- “I noticed about about 2 weeks little muscle twitches all over my body constantly and I felt I uneasy.” In context ↗ Withdrawal problems
- Medical Medium protocol (celery juice)“I could no longer juice because it became like poison in my body for 6 hours” In context ↗ Made symptoms worse
- Glutathione“it started giving me what feels like more brain inflammation/headaches” In context ↗ Made symptoms worse
- Glutathione“they gave me a gluathione push and it gave me a bad headache for days” In context ↗ Side effects
- Lorazepam (Ativan)“I can physically addicted to Ativan FAST years ago so I’ll never touch it.” In context ↗ Withdrawal problems
- Corticosteroid pulses“they put me on prednisone and it made me go crazy after several days so I stopped it but the damage was done” In context ↗ Mood or psychiatric effects
- Massage“when I first started getting massages they would make me sick the next day” In context ↗ Made symptoms worse
- Vitamin C“When I stopped the C (because it was flaring the gastritis I have), it came back.” In context ↗ Gut side effects
- Low-dose naltrexone“it caused what felt like an explosion in my gut” In context ↗ Gut side effects
- Testosterone“I would love to do more but it flares up gastritis for me.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
My doctor put me on a supplement that basically almost eliminated the PEM.
In context ↗ - POTS & dysautonomia
I’m dizzy upon standing.
In context ↗ - Sleep problems
I take a LOT to get and stay asleep.
In context ↗ - Pain & fibromyalgia
I’m in more pain (muscular)
In context ↗ - Headaches & migraine
I still have headaches. But not as bad.
In context ↗ - Gut problems
Years of antibiotics destroyed my gut and I do believe that’s why I am here.
In context ↗ - Heart symptoms & palpitations
I can get tachycardia or just a too fast heart beat to stay in a deep sleep.
In context ↗ - Muscle weakness
I’m in more pain (muscular) and have more fatigue/muscle weakness.
In context ↗ - Temperature regulation
I’m ALWAYS cold.
In context ↗ - Neuropathy & tingling
It’s like nerve pain in my skin.
In context ↗ - Anxiety & low mood
I am VERY prone to anxiety
In context ↗ - Loss of smell or taste
I even lost taste and smell for a couple of days
In context ↗
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