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Linked are articles #1 & 2 in a series of many detailing individual treatment results from #TREATME survey. At a later date, a comprehensive overview & analysis of pertinent data will be shared.🧵
#1: NK, LK, SP
pharmd.substack.com/p/treat-me-sur…
#2: Immunoglobulin
pharmd.substack.com/p/treat-me-sur…
#1: NK, LK, SP
pharmd.substack.com/p/treat-me-sur…
#2: Immunoglobulin
pharmd.substack.com/p/treat-me-sur…
OVERALL CONDITION
Over 81% on SCIG (n = 11) & 72% on IVIG (n=29) reported their overall condition improved. Strikingly, >52% reported feeling moderately to much better w/ >27% of the 38 respondents feeling “much better.” This is significantly better than most other surveyed txs!
Over 81% on SCIG (n = 11) & 72% on IVIG (n=29) reported their overall condition improved. Strikingly, >52% reported feeling moderately to much better w/ >27% of the 38 respondents feeling “much better.” This is significantly better than most other surveyed txs!
TIME TO IMPROVEMENT
Responses varied substantially. 9 out of 25 (36%) respondents reported it took just 1 to 2 rounds of therapy before starting to feel better, while on the other extreme, 8 out of 25 (32%) respondents reported that over 10 rounds of IgG were required.
Responses varied substantially. 9 out of 25 (36%) respondents reported it took just 1 to 2 rounds of therapy before starting to feel better, while on the other extreme, 8 out of 25 (32%) respondents reported that over 10 rounds of IgG were required.
#TREATME
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵
Very Quick thoughts:
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.
1) cont..
Also note small sample size, so can't draw strong conclusions yet.
2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
Also note small sample size, so can't draw strong conclusions yet.
2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
I don’t understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, aren’t immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
Adding summary from your suggestions:
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
Adding the importance of testing and screening for common dysautonomic, neuro-endocrine and autoimmune diseases, including this excellent list here from @Dysautonomia:
#TreatME #TreatLongCovid #LongCovid
#TreatME #TreatLongCovid #LongCovid
