Condition not stated
Moderate → somewhat betterIll 40 years before improving or writing
In bed many days for six years, now somewhat better with bitters and herbal teas
- Condition
- Condition not stated
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 40 years
- Last post
- Jul 2024
In their words
- Condition: Condition not stated
We don't know that I have ME. Since it's a diagnosis of exclusion
In context ↗ - At worst: Moderate
spend many many days only out of bed for bathroom and food
In context ↗ - Now: Somewhat better
it's the first time in years, and many many meds, that I had a glimmer of positive change
In context ↗ - Began after: a bacterial or tick-borne infection
It was likely Lyme, first.
Read from 72 of their posts and comments; links to the 29 this page draws on
Summary
Creek 11745 has struggled since childhood, likely starting with a Lyme infection that went systemic, and for six years an intractable EBV flare has kept them in bed many days, out only for the bathroom and food. A dietician's bitters, herbal teas and broth eased their gut and gave them the odd day up, and herbal protocols in 2024 brought mild shifts and one normal day. After Lyme cleared, they say they feel better but are not more functional.
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What they tried
What they credit
bitters in water· Helpedherbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf)· Helpedherbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf)· Helpedherbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf)· Helpedherbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf)· Helpedherbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf)· Helpedbone broth· Helpedherbalist protocols (herbs for immune support, one specific for EBV)· Helped · mainhigh-protein whole-foods diet· HelpedLyme treatment· Helped
Also tried
THC/CBD edibles and tinctures· Helped a lotsalt in water and electrolytes· Helpedfiber supplement· Helpedcolorectal physical therapy exercises· Helpedduloxetine (Cymbalta)· HelpedValium· HelpedL-arginine· HelpedFloradix and Blood Builder (food-based iron)· Helpedibuprofen· Helpedmeditation and body scan· Helpedvagus nerve reset exercises· Helpedstimulant medication· Worsemagnesium· Worsehormonal IUD· Not said
Their words about each treatment
- salt in water and electrolytes · Helped
I've started adding salt to my water and it seems to help.
In context ↗ - fiber supplement · Helped
daily fiber supplements don't do much for regularity, but they seem to affect the quality of what emerges in a good way.
In context ↗ - bitters in water · Helped
bitters in my water has helped
In context ↗ - herbal teas (ginger, chamomile, nettle, hibiscus, raspberry leaf) · Helped
She had me START by just adding bitters to my water, herb tea (ginger, chamomile, nettle, hibiscus) and broth
In context ↗ - colorectal physical therapy exercises · Helped
I have a set of pt exercises from a colorectal physical therapist, that sometimes help and sometimes don't
In context ↗ - duloxetine (Cymbalta) · Helped
Duloxetine worked for me, for a while: it helped me regulate sleep, and took down my pain levels.
In context ↗ - THC/CBD edibles and tinctures · Helped a lot
a small dose of THC/CBD is AMAZING pain relief for me and helps me sleep
In context ↗ - stimulant medication · Worse
stimulants have been a double edged sword for me
In context ↗ - Valium · Helped
I used it for a good long while. A tiny dose did a lot.
In context ↗ - magnesium · Worse
Magnesium isn't something I can take anyway (it triggers a crash for me.)
In context ↗ - L-arginine · Helped
The thing I've found that helps is L-arganine (amino acid supplement), which supports peripheral circulation.
In context ↗ - herbalist protocols (herbs for immune support, one specific for EBV) · Helped
my doc sent me to an herbalist who put me on (premade, so maybe orderable) protocols. They've been mildly helpful
In context ↗ - Floradix and Blood Builder (food-based iron) · Helped
They are both food based, can be taken on an empty stomach, and for my body seem really absorbable without causing nausea or constipation.
In context ↗ - ibuprofen · Helped
Ibuprofen or other antiinflammatories.
In context ↗ - meditation and body scan · Helped
Sometimes meditation helps for me
In context ↗ - vagus nerve reset exercises · Helped
doing gentle stretches, vague nerve reset exercises, or a body scan ... SOMETIMES help me be more relaxed
In context ↗ - high-protein whole-foods diet · Helped
I definitely do *better* with more protein
In context ↗ - hormonal IUD · Not said
I elected for a hormonal iud, which my GYN said may help if any of my symptoms are endometriosis
In context ↗ - Lyme treatment · Helped
my Lyme is cleared (as far as we can tell)
In context ↗
Approaches: Alternative therapies · Antibiotics · Diet · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| childhood, about 40 years before 2024 | Lyme infection as a small child, then lifelong symptomsI've been struggling with this shit since I was a kid. Literally. (40 years, more or less?)In context ↗ |
| 2023-10-26 | many days in bed, out only for the bathroom and foodI have a lot of variation, and spend many many days only out of bed for bathroom and food.In context ↗ |
| 2023-11-19 | bitters, herbal tea and broth from a dietician; gut better and a day up without a crashyesterday I was out and about (just driving and sitting, I was chauffer for necessary things), and today I am still up and getting stuff done.In context ↗ |
| 2024-05 | herbalist protocols, including one for EBV, gave a glimmer of change and one normal dayOne of them is specific for EBV. I had like... A normal day!!! Just one, but holy cow!!!In context ↗ |
Adverse events
- “I had med related very minor palpitations, and even though we knew what caused them and that they were going away” In context ↗ Heart rhythm problems
- Stimulants (unspecified)“I had to stop taking them... They made me too prone to overdoing it” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“But it also made me groggy, and prone to naps.” In context ↗ Side effects
- “it does leave me out of it for the rest of the day” In context ↗ Side effects
- “fasting always fucks me up a bit for a few days” In context ↗ Made symptoms worse
- “general anaesthesia keeps me under for longer than other folks” In context ↗ Side effects
- Salt, electrolytes and fluids“it has fake sweetener in it... Which I hate in the first place, but ALSO triggers digestive woes if I have it anyway.” In context ↗ Gut side effects
- Magnesium“Magnesium isn't something I can take anyway (it triggers a crash for me.)” In context ↗ Made symptoms worse
- IUD (hormonal or copper)“I can't do systemic hormones ... hormonal roller coasters definitely screw me up!” In context ↗ Side effects
- Iron infusion / ferritin repletion“Plain old iron pills don't do much for me, but they do shut down my digestion in a hurry.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
a short walk had too much recovery, and every exertion (I got the dishes organized to wash...) required a rest after
In context ↗ - Brain fog
I can't tell the difference, in a non-functional state between brain fog and lack of focus.
In context ↗ - POTS & dysautonomia
all of us with pots and other tanked BP are over here putting salt on our Chinese food and in our drinking water
In context ↗ - Sleep problems
I'm sleeping about 10 hours a night, and if I get less I will crash out hard after a few days and need to go back to bed to sleep until I'm caught up.
In context ↗ - Pain & fibromyalgia
it has taken away the pain that's so constant it doesn't even register but keeps me from sleeping
In context ↗ - Gut problems
I'm working with a dietician for some complex digestive woes (mixed IBS, and general lack of mobility).
In context ↗ - Breathlessness
I find I still feel that oxygen hunger and it's unrelated to asthma.
In context ↗ - Anxiety & low mood
None of my anxiety is really emotionally triggered, it's a physical level "stuff is wrong" tension
In context ↗ - Heart symptoms & palpitations
I had med related very minor palpitations
In context ↗
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