nogluten
Member
I posted about my partner's issues on another thread: Ehlers Danlos comorbidities and treatment?
Symptoms are basically the typical of this combo: Migraines, body pain, fatigue, anxiety, stomach pain, sleep issues, arthritic flair ups, etc. and pretty debilitating
Some bloodwork details:
Low Vitamin D originally 13ng now about 25ng (has improved with supplimentation)
Lowish Progesterone around 35( but on BC so maybe not surprising, stopping is not an option right now)
Low end DHEA around 100
Highish Prolactin around 30
Lowish SHBG(I'm guessing from the BC since it's testosterone-like)
Extremly low Serotonin, 8ng/mL (ref range 50-200ng), this one is very shocking to me since serotonin is usually considered bad, and with her digestion I really expected it to be high... so is this some interacton with EDS/MCAS or maybe depletion from SSRI usage? Is it ever a good idea to take serotonin, since she does have the described symptoms of low serotonin and maybe that's inhibiting dopamine??
But essentially she has Ehlers Danlos and in my opinion mast cell activation disorder which seems to go hand in hand. She basically gets all of the symptoms.
Things that have helped in the past
Modified diet
Antihistamines, especially cyproheptadine
Epsom salts temporarily
Probiotics (I'm surprised they help, Peat said they usually shouldn't make it past the stomach acid)
Vitamin D has helped somewhat over time by raising her levels from around 10 to almost 30
GABAenergic drugs like butabital are very effective for helping immediately but comes with a milder rebound. Cant be overused and dependent on prescription amount.
Cymbalta seems to be helpful regularly
Things that have not really helped or only very mild
Thyroid, especially t3 initially helped to stabilize hunger and mood but after a week or two the benefit just stopped even when taking more, surprisingly insensitive to thyroid. Doesn't even noticeably get warm her on a full size t3, just doesn't do much. 12mcg of t3 does literally nothing.
Magnesium glycinate, not sure if it's just better tolerated or if the glycine is helping to displace glyphosphate. Still a mild benefit only
Vitamins b1,b3,b2 didn't have much noticeable benefit, and some were not well tolerated by digestive system
GABA, although she's definitely low in gaba or high in glutamate actually trying gaba a couple times didn't work, unsure if requires more time
Things that have made it WORSE
SSRI's like zoloft seem to have made her permanently worse and took a very long time to even approach pre-usage levels. This has by far been the worst thing she's tried and I dont' think ever recovered from completely, I hope she can.
Anything that irritates the intenstines like poorly digested vitamins
Exercise, probably triggers the mast cells
I think since thyroid didn't help as much as expected the next approach is to attack the mast cells? Has anyone had any experience with resolving something similar?
Symptoms are basically the typical of this combo: Migraines, body pain, fatigue, anxiety, stomach pain, sleep issues, arthritic flair ups, etc. and pretty debilitating
Some bloodwork details:
Low Vitamin D originally 13ng now about 25ng (has improved with supplimentation)
Lowish Progesterone around 35( but on BC so maybe not surprising, stopping is not an option right now)
Low end DHEA around 100
Highish Prolactin around 30
Lowish SHBG(I'm guessing from the BC since it's testosterone-like)
Extremly low Serotonin, 8ng/mL (ref range 50-200ng), this one is very shocking to me since serotonin is usually considered bad, and with her digestion I really expected it to be high... so is this some interacton with EDS/MCAS or maybe depletion from SSRI usage? Is it ever a good idea to take serotonin, since she does have the described symptoms of low serotonin and maybe that's inhibiting dopamine??
But essentially she has Ehlers Danlos and in my opinion mast cell activation disorder which seems to go hand in hand. She basically gets all of the symptoms.
Things that have helped in the past
Modified diet
Antihistamines, especially cyproheptadine
Epsom salts temporarily
Probiotics (I'm surprised they help, Peat said they usually shouldn't make it past the stomach acid)
Vitamin D has helped somewhat over time by raising her levels from around 10 to almost 30
GABAenergic drugs like butabital are very effective for helping immediately but comes with a milder rebound. Cant be overused and dependent on prescription amount.
Cymbalta seems to be helpful regularly
Things that have not really helped or only very mild
Thyroid, especially t3 initially helped to stabilize hunger and mood but after a week or two the benefit just stopped even when taking more, surprisingly insensitive to thyroid. Doesn't even noticeably get warm her on a full size t3, just doesn't do much. 12mcg of t3 does literally nothing.
Magnesium glycinate, not sure if it's just better tolerated or if the glycine is helping to displace glyphosphate. Still a mild benefit only
Vitamins b1,b3,b2 didn't have much noticeable benefit, and some were not well tolerated by digestive system
GABA, although she's definitely low in gaba or high in glutamate actually trying gaba a couple times didn't work, unsure if requires more time
Things that have made it WORSE
SSRI's like zoloft seem to have made her permanently worse and took a very long time to even approach pre-usage levels. This has by far been the worst thing she's tried and I dont' think ever recovered from completely, I hope she can.
Anything that irritates the intenstines like poorly digested vitamins
Exercise, probably triggers the mast cells
I think since thyroid didn't help as much as expected the next approach is to attack the mast cells? Has anyone had any experience with resolving something similar?
