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Baseline Severity of Illness (KPS scale) Illness durationDate ampligen startedXMRV statusampligen dosageBaseline IL8 (0-15pg/ml)Baseline C4a level? (20-1400 ng/ml)Baseline NK cell absolute countBaseline NK cell cytotoxicityBaseline 37kDa Rnase-LBaseline VO2 MaxRe-tested IL8 (0-15pg/ml) if applicableRe-tested C4a level? (20-1400 ng/ml) if applicableRe-tested NK cell absolute count if applicableRe-tested NK cell cytotoxicity if applicableRe-tested 37kDa Rnase-L if applicableRe-tested VO2 Max if applicableAny other reactivated infections?Receive second bag of IV fluids in addition to each amp infusion?Other medications while on ampligen?side effects?Treatment location (city, state) City living in while getting treatment (if different from treatment location)Did you move for treatment? Y/NResponse so far? (Please include date of your entry and infusion number)Maximum KPS obtained while on the drug# Weeks to Maximum improvement# Weeks Before Substantial ImprovementsSymptoms (cognition, PEM, POTS, etc.) substantially improved while on drugIf drug discontinued, did relapse occur? (No, partial, full, worse than before started)Total annual costWhat type of insurance do you have, and how much of the cost did insurance cover?
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Mary S305 years before Ampligen (1994)2/2/1999pos for antibodies and in culture400 1999-2008; 200 2010-20112%Pos off Ampligen one year, neg after six months on Amligen15.5EBV, HHV-6A, HHV-7, CMV, Coxsackie BYes for NMH/POTSThyroid, sleep, painAt first, sleepiness and worsening of symptoms. None after 2 monthsPhiladelphia to 2008, then Incline Village to 4/11Newark, DE to 2010, then Incline Village, NV to 4/11MOST RECENTLY (3/10-4/11), from Newark, DE. Then I quit because I could not bear living apart from my husband any longer. If I cannot get it back, I will relapse again in months.6/2000 after 16 months - KS 70
6/2006 after 4 years 4 months - KS 70
6/2011 after 1 year 6 weeks - KS 60		701 year, but I have to remain on it or within a year I relapse. I have been on it 9 of 12 last years12 weeks each of 3 timesblackouts, ataxia, repressive dysphasia, eventually inability to walk, severe pain behind eyes and back of neck 24/7, severe headaches, muscle pain, sevre muscle weakness, disorientation, severe confusionFull - after one year the first time, after seven months the second time, will let you know for the current, third time.$35,000/year 1999-2000. $20,000/year 2002-2008. $12,000/year on half-dose 2010-2011. This includes tests and co-pays. 2010-2011 also had to rent an apartment.BC/BS and Medicare; covers cost of infusion and some tests
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Deb60 (at time of trial)28 years total2003-2004neg/Singh trial EBV, HHV-6A, HHV-7, CMV, Mycoplasm twice noFlu symptoms day of infusionSalt Lake City, UtNo no response60No change
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Laurel609 years at start of trial2003-2004Pos, WPIUnknownNoNoSalt Lake City, UtNo Good response, was on drug 15 months80243Fatigue, myalgias, brain fog, PEMRelapsed 4 1/2 years after going off drug, much worse than before drug
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Laurel404 1/2 year relapse5/10/2011Neg. Singh triall UnknownNoNoFlu symptoms day of infusion and next daySalt Lake City, UtNo Good response 50 after 6 weeks of drug1Fatigue, myalgias, brain fog, PEMUnknown, still on drug
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4021 years at the start of trial6/7/2011?50 mgUnknownNo Yes - Singulair (allergies) Claritin (allergies)Severe increase of flu-like symptoms for 72 hours following infusion. Also have bone pain, migraines and minor changes in mood.No Good response after one infusion. Noticeable PEM reduction by 4th infusion. (June 2011)70351Fatigue, brain fog, PEMUnknown, still on drug7200Medicaid. All infusion costs and Dr. visits.
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Amy M3519912002PosHHV-6,
Herpes Simplex		SalineArmor Thyroid
Biestrogen
Trazedone		Bad headaches day of treatment;
Itching;
Increase in all symptoms for first several months;
Clinical depression;		Charlotte, McAsheville, NCYes, but we've stayed in AshevilleAfter third round in 2006/2007 I enjoyed a three year almost remission.
In severe relapse now		80Almost a year12 to 16 weeksCognitive function of all types;
Stamina and ability to exercise;
Pain reduction;
Decrease influx symptoms;
Balance;
Sensitivity to light and noise disappeared;
Full - I am considering going back on. I had three years of decent health - most of the time between 75 and 80.
I'm certain I didn't pay enough attention to pacing but the relapse trigger was a bad car accident
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WK501986-present9/90-4/91 1/92-1/93Pos , WPI0mm 400mg, pre formulation change when drug was heat activated 390/cumm U of M14% U of M26.3 -- 69% of Predicted178/cumm U of M19% U of M42.1 --114% of predictedEBV, HHV-6,NoArmor Thyroid, Klonopintiredness day of infusion, Flu symptoms next day, None after 8 weeksIncline Village NVYesGood response80Still improving when taken off after 1 year12 to 16 weeksFatigue, myalgias, brain fog, Headaches, Night Sweats, Lymphadenopathy, sore throats, PEMFull relapse after 1 year but had much better overall muscle toneliving expenses and medical testing, HEM Paid for Double blind study Drug expensesPrivate insurance, drug study expenses not covered
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