HEALTH HISTORY
1960-1970 AGES 1-10
Vaginally it would seem! October 18th 1960 Brooklyn NY. And according to my mother, breast fed for the first two weeks. Then to hell with that -time for formula! Mom was just out of nurses training and had to get back to work. I received all the required vaccinations and suffered the typical bruises and cuts most kids do. Not sure I ever had ear infections that required antibiotics. No one remembers.
I have three sisters born in '61,'62,'66, Janet, Lillian & Jean respectively.
1964 At age 3 I have inguinal hernia surgery. Prophylactic antibiotic.
Between 1962-1968 (because Dad worked for GE) we lived in MA, OH, IL, OH and finally settled in Fairfield CT.
Where we adopt stray kittens and enjoy some pretty wonderful cats and one Alaskan Malamute over the years.
COWS R US
Our Grandfather had a family vacation home in Mount Holly, Vermont, bordered by two dairy farmers who would graze their cows on our land. We LOVED those cows. We would play with them, pet them, and as you see, sit on them, I even learned to hand milk them. So oddly enough for suburban kids we had some exposure to dirt, farm animals and plenty of microbes. For a few summers we had ponies we would pet and ride. No one has allergies at this time. Two of my sisters hanging with the cows.
BIG SICILIAN FAMILY
Boisterous family gatherings, tons of great food on my father's side in Bensonhurst Brooklyn and Vermont. We are encouraged to enjoy food, lots of it...Italian American Diet with a touch of Mediterranean. Tales of great Aunt Nancy plucking dandelion leaves from the lawn in Mount Holly for sautéing, how one orange would be divided amongst the seven newly arrived siblings from Sicily to the Lower East Side to whom would get the broken bits from the pasta factory to save money. Though I was not a big fan of the raisins in the meatballs (Arabic influence )I loved these stories that dotted my childhood of endless pasta, ravioli, marinara sauce, squab, Amaretto, and fennel between courses of the 8 hour Sunday meals.
BIG IRISH CZECH FAMILY
Two of my Uncles on my mother's side were commercial lobster fisherman, so a few weeks in the Hamptons each summer included plenty of fresh sea food from them, when we weren't swimming, clamming and catching it ourselves! We spent most of our time outside, in the water, the muck, catching and cleaning whatever we caught and playing in the dirt, on the beach etc...
AND YET I AM SKINNY
Thank goodness we are not raised in the confines of Old World Bay Ridge and Bensonhurst Brooklyn, but in the suburbs of Fairfield, Connecticut, where we are encouraged to be athletes and to look outward! In short we are pretty healthy, normal kids, swimming, running, playing, biking, dodge balling, soft balling and tree climbing. I eat what I want! There are threats to "fatten" me up with milkshakes.
1970-1980 AGES 10-20
FALLS & SPILLS & CHILLS
1972 I take total care of and ride friend's horse while she's away on week-ends and vacations.
1973 I manage to fall off a horse during sleet storm and get a mild concussion. After getting x-rays I become ill, twice in the space of 4 weeks, from what might have been a chest infection then a virus and I recall never feeling so badly. One round of antibiotics.
Healthy more or less with lots of swimming, running, biking. I weight about 115 lbs at 5'4" this is just fine.
1975 In here somewhere is on bout of strep with round of antibiotics.
1977-78 Wisdom teeth removed with post procedure infection-antibiotics for certain.
ENTER ASTHMA & ALLERGIES
1977-78 Out of "nowhere" I develop asthma that is triggered by exercise, cats, who knows? Suddenly I break out in hives around horses, barns, bear skin rugs, my mother's house which is filled with cats. NO idea what triggers this at the time.
1980-1990 AGES 20-30
THE COLLEGE YEARS
No health issues save for mild depression after living as indentured nanny to famous actor's chronically spoiled brat and unhinged wife for first 6 months I attend NYU. I get over it and learn to SAY NO next time to 90 hour plus work weeks (on top of attending classes) for $1.50 an hour! Life teaches. As far as I can remember I don't have any other health issues. I travel with our college choir to Europe. Two years in a row. The only thing I catch is Wander Lust.
I START TRAVELING & REJOIN HUMAN RACE
1985 After college I start traveling to Nicaragua. I get Giardia and am treated with Flagyl.
1986 Am treated for gyn condition with Azithromycin
1986 Am treated for gyn condition with either Doxycycline or Azithromycin.
1987 I fly down to Mexico City with a mild chest infection which turns into severe asthma attack by the time I reach remote village of Santiago de Atlitlan in Guatemalan highlands. I stay up all night barely able to breath, but since there was no doctor or way to travel out till the a.m. bus I stuck it out. In Antigua Guatemala, my next stop, I see doctor and am given antibiotics. Once in Managua I get treated for pneumonia by Che Guevera's nephew, a nice Cuban doctor, with antibiotics from local military base wrapped in a brown paper cone. (drugs are scarce thanks to U.S. Contra war blockade).
AND YET I AM STILL TRIM AND GETTING MORE ATHLETIC
1988 I discover resistance training, tone up, at 127 lbs. I am still eating whatever the hell I want! I have yearly weight fluctuations between 127 and 136 lbs, seasonal perhaps. Blood work normal.
1988 -127 lbs
1990-2000 AGES 30-40
THE RADIO & GARDEN DESIGN YEARS MORE TRAVEL BUT NO BUGS
Am running full service Garden Design business off of bicycle in Brownstone Brooklyn & Townhouse Manhattan, so am getting PLENTY of exercise in addition to the swimming, hiking, weight lifting, ballroom dancing etc...
I also become radio features reporter for public radio outlets, and produce live radio for WBAI/Pacifica. So I am VERY busy and full of energy, traveling etc. My weight remains steady at 127 lbs with mild seasonal fluctuations upwards.
At the end of this decade I start putting on weight after taking antibiotics, "carbing up" and eating wonderful Dominican food!!!
SHANGRI-LA HIDDEN IN FOOTHILLS OF DOMINICAN ALPS
1997 San Jose de Ocoa, Dominican Republic, development Shangri-La. I'm on assignment for NPR and Christian Science Monitor Radio and end up getting married and living in this mountainous paradise on and off for the next 10 years. It becomes my second home.
I also end up with various tropical ailments, pneumonia, intestinal parasites, the usual. All treated successfully.
TREMORS
Trouble in Paradise Begins
1998 July - Ear infection turns into nasty pneumonia I am treated with Cipro
1998 September - Infection remains once I return to Brooklyn. Am treated again with Cipro
I start putting on weight-No doubt aided by Oneda's wonderful cooking (rice ,beans bonuelos, batidos, dulce de higo etc..) in San Jose de Ocoa. The Carb Up Low Fat baloney everyone is following doesn't help either.
2000-2010 AGES 40-50
LOVE IN THE TIME OF TANGO & ATKINS
I find Tango, Travel and Antibiotics...
This decade opens with me living happily half the year in San Jose de Ocoa, in the foothills of the Dominican Alps volunteering for a local, well regarded development organization I had reported on for public radio. I start putting on weight as the conventional eating "wisdom" at this time is to "carb up" which was NOT good advise for me. Despite volumes of excercise, I plump up to 157 lbs by 2003.
THEN I easily lose lbs by switching to low carb, high fiber/fat diet. Weight melts off and stays that way for years, effortlessly, til antibiotics start to erode my metabolism and all hell breaks loose even before I get zapped with Lyme...
As the decade wears on no one is linking the ensuing health issues to my antibiotic use. I am highly athletic and enjoying more and more sports mainly Argentine Tango. But in my early 40's things start to go haywire and no one can explain it. I make heroic efforts to increase exercise (ok, maybe not heroic I LOVE exercise and especially Tango but I am trying to out exercise and eat healthily not realizing my metabolism was being depleted putting me unknowingly on a dysbiosis hamster wheel with no relief).
TROUBLE & ANTIBIOTICS IN PARADISE
2000 March - Treated for intestinal parasite with Albenza.
2000 June - 140 lbs
2001 February - Tropical infection treated with Flaygl
2001 June - 150 lbs
2002 June - 155 lbs
2002 April - 157 lbs
2003 April - I switch to modified Atkins eating regime and lose, easily, around 30 lbs. My diet consists of protein, vegetables, nuts, seeds and high fat dairy. Cholesterol goes up, weight goes down. Effortlessly. Just stopped eating garbage refined carbs. This lasts for YEARS. I maintain 127 lbs (remember I am athletic with plenty of muscle) for years without even thinking about it. Am never hungry. (Was not eating organic or grass fed or wild catch in those days btw.)
2003 May - 136 lbs
2003 July - 127 lbs
2004 January - Gyn - Flagyl
2004 July - Treated for UTI with Doxycycline
2004 July - 127 lbs
2004 August - Treated for UTI with Ampicillin
2004 November - For Surgery - Doxycycline
2004 November - Post Surgery - Flagyl
2005 July - 127 lbs
2005 October - Clindamycin
2005 October - UTI - Flagyl
MORE ANTIBIOTICS
2006 May - UTI -Cipro
2006 May - UTI - Azithromycin
2006 May - 136 lbs
2006 May - I register formal complaints with my doctors which I always documented for exams since I could not remember off hand): "Loss of muscle tone, general weakness, more tired than usual, slow weight gain over previous year and dramatic weight gain (10 lbs) in April. "(Pattern). "No change in diet but am eating more fish. Dry skin, stomach bloating, gas, yeast infections for no apparent reason." (unless you're looking at antibiotic use, which apparently no one is). Other symptoms are normal for age, sharp pains in vaginal and ovarian area. Pelvic and abdominal MRI's, colonoscopy, nutritional, adrenal testing and blood work all return normal.
2006 July - 127 lbs
2007 March - Doxycycline
2007 May - Removal of Lipoma - Ciprofloxacin
2007 June - Kidney Stone Hell - I end up in hospital- it passes in a few days - Ciprofloxacin
2007 June - 136 lbs
2007 November - December - Strange bouts of what feels like food poisoning, but isn't quite. Nausea, bloating, diarrhea rare vomiting, but mostly GI issues. Doctors have no idea what is causing this. Dry patchy skin in neck/shoulder area.
AND EVEN MORE ANTIBIOTICS & ADIOS TANGO
2008 January - April - More complaints to multiple Drs: "food poisoning" like symptoms between November and March, nausea, cramps, diarrhea, am guessing it's not food poisoning. Still 10 lbs over weight, not responding to usual diet. Dry patchy skin, intermittent, especially where neck meets shoulder, cuts not healing quickly, hair thinning, weak nails, joints aching, distended bloating after eating, more fatigued, temps during waking hours but slightly low on thermometer. Am consulting with my GP, Endocrinologist, Gynocologist, nutritionist, Dermatologist and Gastroentergologist. MRI's CAT -scans. All coming back normal save for some slight shifts in hormones, but nothing explains symptoms.
2008 May - UTI Ciprofloxacin
2008 May - UTI Amoxycillin
2008 July - UTI Doxycycline
2008 July - 136 lbs
2008 August - MY LEFT FOOT I am visiting Aunt in Southampton, run on beach and POP goes something in my left foot. I ignore (because I am, after all invincible!), keep jogging, walking, dancing and then Rrrrrrriiiiip! I make it worse.
I limp for the next two years
Goodbye: walking, running, hiking, dancing tango, LIFE AS I KNOW IT. Loss of muscle tone begins here.
2008 September - I see podiatrist #1 who tells me to "take it easy", prescribes RICE but no PT. I ask for MRI's and PT. I am doing everything barefoot (walking on beach, weight lifting) and am told this is ok. I am doing moderate PT for foot. I limp till February 2009, as walking is painful.
2008 October - My psychopharmacologist tells me to "watch out" for my fasting glucose levels. My GP doesn't bother and says "we don't treat until" it's full blown..." Diabetes? As in why bother with prevention?
GOING DOWN THE METABOLIC SYNDROME BLACK HOLE & EARLY LYME
2009 February - Azithromycin
2009 February - October - I see podiatrist #2 he ramps up my PT regiment and tendon tears again. Walking is impossible again, I am using cane, crutches. I can bike, swim and do limited yoga. But NO dancing, walking, running or resistance training using legs.
2009 March - MRI show TORN Posterior Tibial Tendon, FIRST time THIS tendon is mentioned.
2009 March-April - Possible Swine Flu NOT MUCH FUN
2009 May -Ciprofloxacin
2009 June - I see Doctor #3 for torn tendon - he puts me in leg brace.
This is did not go over well.
2009 June - 148 lbs
2009 June - I get married, we head to Fire Island where we have a cottage and garden up a storm. I swim, lift weights and scheme on how I can host Milongas anywhere I can find a dance surface once my tendon heals up!
2009 October - I see Doctor # 4 for torn tendon. Sports surgeon genius at HSS. Month 14 of tendon trial.
2009 November - Lyme test comes back borderline. I am told they are negative.
2009 November - 155 lbs
2009 November - HSS Doc does PRP Therapy
2009 December - HSS Doc does more PRP Therapy
2009 December - UTI - Zithromycin
2010-2017 AGES 50-56
MARRIAGE & LYME
BAD COMBO.
Turns out chronic illness is not much fun in relationships.
I am now convinced I was bitten shortly after we we were married in 2009.
Symptoms start showing up in early 2010.
Sigh. See Lyme vs. Dysbiosis Symptoms
Luckily Husband is total supportive mensch.
2010 January - HSS Doc does 3rd PRP Therapy
2010 January - I report the following symptoms to Drs: "Sharp pains (kidney stone like but they never move below left rib), Painful tender to the touch, sometime pains flaw up after meals or they just appear, "fevers" at night, itching at night, number hands at night, sharp pains through joint area, wrists, arms, neck, down legs to feet, shortness of breath, thin stools." See Lyme vs. Dysbiosis Symptoms
2010 February - I report to my cardiologist and GP the following symptoms to drs: SHORTNESS OF BREATH, fevers at night-cold sweats, Numb Hands and feet at night and a.m. Sharp pains (kidney stone like but they never move below left rib), Painful tender to the touch, sometime pains flaw up after meals or they just appear, , itching at night, number hands at night, sharp pains through joint area, wrists, arms, neck, down legs to feet, shortness of breath, thin stools. See Lyme vs. Dysbiotic Symptoms
2010 March - PRP Therapy heals tendon FINALLY. Thank you Dr. O'Malley!
2010 May - 161 lbs
2010 June - Minor Foot Surgery - Antibiotic
2010 June - December - I go from 161 to 147 lbs but cannot budge it from there. I blame my diet (high fiber, low glycemic, vegetables, fish, seeds, nuts, high quality protein and fat) and try to exercise my way out of my worsening blood panels.) I do consume sugar occasionally but in the past by cutting out refined carbohydrates I could lose and maintain healthy weight. Blood work does not improve. Tendon is healing up. I can walk 4 miles at this point after PRP therapy. I use sleep eye mask and am sleeping better as well.
June 2010- Blood Tests reveal BORDER LINE Lyme and retesting in 3-6 weeks is recommended BUT I am told tests came back negative am never told we needed to re-test despite LYME SYMPTOMS.
2010 July - I start light jogging again on Fire Island, VERY slowly, VERY carefully. I recall feeling VERY VERY fatigued, leaden and sluggish and like an idiot attribute this to "being out of condition". Which is nonsense as I was still biking and swimming at the time, so my cardio should not have been affected. Something was going on and I had no idea (and neither did my drs) what it was. I am frantically adjusting my diet (less sugar, more fiber blah blah blah) to try and out run these symptoms. See Lyme vs Dysbiosis Symptoms
2010 July - I complain of stiff joints, shooting pains in my extremities, concentration levels plummet, sleep disruptions, shortness of breath, numb hands in morning, falling into DEEP fatigues, light headed, foggy, I suggest to Drs this is pre-diabetes. They do not contradict or offer any other insights. I blame my diet (because despite foot issues I am still swimming, biking, doing yoga). I set up spread sheets to track diet, exercise, the whole lot in another attempt to "life style" my way out of my worsening health indicators. Drs just nod.
2010 October - I complain to doctors: Large leg muscles weakening, I notice this while biking, having to push harder. I am gasping for air, suffering severe palpitations, I can feel heart pounding against sternum, this is ALL the time now, chest feels tight, can barely get up stairs. While running (slowly, biking, or going up stairs legs feel HEAVY, LEADEN like I am trying to lift cement blocks.) Very strange I note. Indigestion, upset stomach, lots of trips to bathroom. Mild nausea. Numbness at night, during day occasionally. Little shooting pains here and there. One day palpitations get so bad I end up in ER thinking I was having heart attack. They found NOTHING wrong except nurse asks if MS runs in my family after looking at my face. Facial muscles were freezing up but no one ever thinks Lyme. I again treat this as life style issue (my fault) and redouble efforts to eat more fish, high fiber, no refined sugar etc...
2010 November - Cardio Catheterizqtion to check out weird heart symptoms They find absolutely nothing wrong.
2010 December - Minor surgery on left foot to remove neuroma Doxycycline used.
2010 December - 147 lbs
2011 January - December - 148 lbs
2011 March - Amoxycillin/Clavulanate
2011 June - Desperate letter to multiple Drs with the following symptoms : "SEVERE FATIGUE, to the point where I can't move, must lie down-feeling DRAINED of ALL energy...(I had a bout of this last Monday, then again yesterday to the point where I could NOT move or lift my head.) Light headedness-dizzy while running. WHAT is that? Mild nausea. Foggy thinking, cognitive difficulties (doing weird things with misplacing things or grabbing the items for the wrong use) Forgetting words, names, people. Difficulty in pronouncing words, also becoming increasingly dyslexic , hand writing worsening. Muscles feel weak, can BARELY do a mild trot in the park, it's painful, hard, work, feels like I weight a TON, dragging myself through work-outs. No trouble breathing, but limbs feel extraordinarily HEAVY-leaden. Like muscles aren't working. Am sometimes off balance, teeter once in awhile. Mild drooling from right side of mouth, numb hands in the a.m. Mini shocks of pain through ligaments/muscles. Severe rash from 10 minutes in the sun (unprecedented) What feels like fever but shows up at 97.6 when temperature readings are taken. However have been sleeping well this week. Am asleep by 9:30, up early but the energy levels are LOW. Stomach upset, am now unable to eat much after 5 pm, which is actually FINE and I feel better. Bowel movements are are pinched at times. Impossible to go below 148 lbs despite vastly improved eating habits and now that my feet are better I can do what I like, BUT the energy levels are NOT there. I am exhausted to a crippling degree. Eating habits are great, no one needs to convince me of the perils of pre-diabetes which is another way of saying I am a diabetic in waiting. But after the initial (and slow) loss of 15lbs I am locked in at 148 lbs. I SHOULD be 127 lbs. I need answers and tests. Please call me."
To this litany of complaints I am told by my GP that I have a "vitamin D deficiency"!!!!!!! My doctor did NOT know what to do with me, and clearly had NO knowledge of Lyme symptoms. A week later my husband and I marched into his office, I handed the above list to his cousin partner in practice, who took one look and said, "You've got Lyme" BINGO! I switched doctors and have never looked back.
2011 June - LYME - Doxycycline
2011 June - Am under treated by infectious disease "expert" who thought 10 days of meds was enough for my presenting symptoms citing "inconclusive" evidence that any more treatment than you'd get for a common throat infection was needed. I had been presenting with Lyme symptoms for almost 2 years.
2011 July - LYME - Doxycycline
2011 July - LYME - Doxycycline
2011 August - UTI - Ciprofloxacin
2011 September - Shocker: I am still wildly fatigued and "pre-diabetic" symptoms continue unabated. I also watch a screening of "Under Our Skin" and realize I was being treated like a crazy person by ignorant doctors who missed my obvious Lyme symptoms. I find a Lyme expert in Mount Kisco, NY.
"Under Our Skin" also available on Amazon Prime.
I also report the following symptoms: "Crippling fatigues, comes in waves muscles feel like they're melting, can barely walk, feel like lead, LEADEN." Thickness under throat area. Loss of 7 lbs in 24 hours. First time in 3 years. Very weird. Low grade fevers. Numbness in hands as well as doing pain (shooting)"
CAT scan results show 2 left kidney stones.
2011 October - Ampicillon
2011 October - I see Lyme expert. Doxycyline is prescribed as well as the usual vague "take probiotics" (which I now know is like taking calming tea for schizophrenia) and informed of all the usual side effects to watch out for, GI issues, avoid sun, avoiding certain foods, etc.. I am also told that the antibiotics will allow my "immune system" to kick in after awhile and fight the Lyme. Only thing is antibiotics DESTROY the immune system via the microbiome so I'm not sure where that logic comes from.
2011 October - LYME - Doxycycline
2011 November - LYME- Doxycycline
2011 November - My LYME symptoms actually start to CLEAR UP and then.....
BAM kidney stones hit hard day after Thanksgiving....
I am rushed to ER, then head to urologists office a day later and we prepare for a lithotripsy to break up one of the stones (there are two). I am put on Macrobid and Amoxycillon/Clavulunate since I'm STILL on the Doxycycline for Lyme and no one is paying attention I have bad reaction. (which is spelled out right on the Pharmacy print out) and end up on a heart monitor with raging palpitations, shortness of breath, sky rocketing blood pressure and chest pain.I am told to get off ALL meds. I am feeling completely out of control and am losing all confidence in all but a few doctors at this point. No one seems to be paying attention to what the others are doing.
2011 December - Kidney Stone - Amoxycillon/Clavulanate/Macrobid
After getting off ALL Meds, heart rate and blood pressure returns to normal. We decide to do kidney stone procedure in January.
2011 December - LYME - Amoxycillin
2011 December - LYME - Amoxycillin
2012 January - BAD reaction to Flomax - feels like heart is stopping, can't breath. Got right off it.
2012 January - EASILY THE TWO WORST WEEKS OF MY LIFE I have the lithotripsy to break up ONE of the kidney stones. It backfires spectacularly. Head home and await their passing with plenty of pain killers. Within two weeks I hit the ER 3 times, have 3 operations, 2 stents inserted and removed, 2 catheterizations and hours of agonizing pain since apparently BOTH stones broke up, got clogged rendering the pains meds worthless. It's easy at this point for me to see how people DIE under doctor's care as the situation escalated and the doctors waited, a week too long to just get in there and GET THE SLURRY THEY HAD CREATED OUT. When the Dr told us I had to undergo the THIRD procedure within 2 weeks I cried. I can't move for two weeks after this.
2012 January - Kidney Stone Ciprofloxacin Lithotripsy
2012 January - Kidney Stone Ciprofloxacin Stent inserted
2012 January - Kidney Stone Ciprofloxacin Stone Slurry Removed
2012 February - LYME - Doxycycline Back on Lyme Meds I tear right meniscus.
PS Ciprofloxacin destroys tendons
2012 March - Knee Surgery for torn meniscusl - Antibiotic
Months of PT, crutches, cane, wheelchairs in museums.
2012 March - LYME - Doxycycline
2012 April - LYME -Doxycycline
2012 April - Weight shoots up 7 lbs in ONE MONTH! (148 to 155 lbs) I begin to think that somehow my rising weight might have something to do with the antibiotics. Don't they give them to cows to make them fat?
2012 April - LYME - Azithromycin
Am feeling sicker by the minute, hollowed out from all the antibiotics, like a part of me is being drained. Not sure if it's still Lyme but I am feeling weak all the time.
2012 April - LYME - Azithromycin
2012 May - LYME- CEFTIN KABOOM C-Diff INFECTION!!! Anyone surprised?
Suddenly something feels very wrong. I am cramping up and running to bathroom. Lyme PA tells me to RUN to ER. Why? "Because you probably have C.Dif." My head blows off at this point. After ALL that and no one mentions I could get a LIFE THREATENING infection from all the antibiotics. I return to to regular GP who tests and yep, it's a C.Diff. infection. Lyme doc casually recommends Flagyl. Regular doc suggests Flagyl. I say uh oh how about a fecal transplant. (I remembered an article in the Science Times about a woman who was saved by one). Reg doc reminds me they are not approved by the FDA. I am thinking the drugs that GAVE me the infection ARE approved by the FDA. Gastroenterologist (since relieved of his duties) has barely heard of FMTs and thinks what I REALLY need is Vancomycin. I'm thinking I don't. I do one round of Flagyl which doesn't work and then google: Fecal transplant Manhattan and BOOM I get Dr. Lawrence Brandt, Head of Gastroenterology at Bronx Montefiore and the
"go to" guy for FMT's in NYC. I research procedure. 98% effective. Husband is donor, I am better the same day. The rest is history...
2012 June - C.Dif -Flaygll
2012 June - 160 lbs
2012 August - FMT Feel better the SAME DAY. See FUN APPROACH
PS. Lyme doctor who blasted me with 9 months of antibiotics never follows up to see if I lived or died from the C. diff infection. I owe him a letter.
NO MORE C.DIF BUT NO MORE ENERGY EITHER. See Lyme vs Dysbiosis
Am left with exhaustions and other symptoms I am not sure are Lyme, but I refuse to take any more antibiotics...
I start researching...see Fun Approach!
THE FALL OUT
I never recover my energy levels. My habits have reversed - from previous athletic, active, outdoors life to spending MOST of my time INDOORS, too tired to exercise, watching Netflix et al. This brings on horrific sleep phase disorder that cripples me so badly and so swiftly I don't even realize it's a sleep disorder. Takes years to figure out and treat. Weight gain off the tracks. Hunger signals non-existant. Socializing next to impossible due to unpredictability of "bad" days. Slowly I research this project and it becomes clear I must treat it as a medical experiment if I am to get a proper donor and track the results. Science very new but promising on this.
2013 January - 165 lbs
2013 February - Symptoms I report to cardiologist: "Racing pounding heart, feelings of anxiety, shortness of breath in pool, climbing stairs. General fatigue, over all stiffness, heaviness, sharp pains in eyeballs, arms joints & jaw. Low grade fevers at night.
2013 February - Husband remarks on my increased appetite. I notice that I no longer FEEL FULL. Hunger/Satiety signals are OFF track.
2013 May - Toe Infection - Keflex I crawl into basement unable to move after taking it for one day, as if a sledgehammer it me. I stop taking it immediately.
2013 MAY - AFTER TAKING KEFLEX: I am now sleeping in the basement where it is dark and quiet. One morning can barely move, body feels completely leaden. Cognative troubles all day long. "Lost" days begin. Takes me 2 years to realize this is a sleep phase disorder on dysbiotic steriods and another year or so to deal with it.
2013 May - 173 lbs
2013 July - I send my first American Gut Project Sample out results are hardly surprising!
2013 September - UTI - Macrobid
2013 October - Knee Surgery - Antibiotic for left meniscus. Am told to "stabilize" knee after surgery and forced to use leg brace, keeping me in a lying position with no PT. I am eating lying down and develop what we at first think is bronchitis but turns out to be GERD. I spend the next 3 years taking antacids, Tums, benadryl to calm GERD attacks, which for me resemble asthma complete with racing heart, shortness of breath, burning sensation. . I eat last meal at 3pm, but no one explains till years later when I end up in hospital with some aspirated acid in my lungs, that eating early does not prevent the acid from traveling back up the esophagus at night if you're still lying flat.
2013 October - UTI - Zithromycin
2013 October - "Bronchitis" which turns out to be GERD - Zithromycin
More time in braces, crutches, & PT, I am visiting museums using wheel chairs and canes. THEN I discover this video of Arthur Boorman and DDP Yoga!!! I manage to rebuild my now weakened leg and foot muscles and tendons using his amazing yoga!!! THANK YOU DALLAS DIAMOND PAGE. I can walk again!!!
Am also poking around on Lyme sites but am frankly not sure WHAT my symptoms are. They are not precisely Lyme but some of them seem to be...Lyme vs Dysbiosis
2014 May - I start to see Dr. Maura Henninger who whole heartedly encourages me to design an FMT treatment as it's the ONLY way, at this point, I can get healthy, human probiotics and hopefully restore some missing gut flora and alleviate some of my symptoms. She edits my research and ensure that my medical protocols are on solid medical and scientific grounds.
Symptoms I report to Dr. Henninger: Heaviness in limbs, shortness of breath, difficulty breathing going up stairs, skin rash problems after eating tons of sweets in December. Exhaustions beyond belief which we later realize are a severe form of sleep disorder.
2014 July - 177 lbs
2014 September - I try Weil Cornell Medical College only to find they're so called "low glycemic" diet plans are no better than Weight Watcher's, (eat "moderate" amounts to sugar!!!) and Metformin. They also are still using out dated restricted calories model. When I point out my antibiotic use and that my metabolism has been compromised by this, I get the usual blank stares. My diet is healthier and stricter than theirs.
2015 January - March - FMT's done with "donation" from healthy friend (after passing my preliminary questionaire). My blood sugar levels drop, my eczema patch disappears for 2 years and my weight gains stop for a year.
2015 February - Foot Surgery Right Neuroma Removed - Antibiotic
2015 March - Realize these horrific days are now tied to massive sleep dysfunction. Symptoms were so severe and abrupt when they began I thought it was directly related to dysbiosis, which it is but indirectly.
March 2015 - Right posterior tibial tendon gets stressed and is treated with Fletcher patch by the amazing Dr. Martin O'Malley of HSS!
2015 April - Trip to Columbia Sleep Clinic not very helpful. As 15 minutes into exam Doctor suggests Neurontin. When I retort that giving someone who has mood disorders sight unseen a med like that is inadvisable and besides Sleep disorder are linked to bipolar disorder. (this was news to COLUMBIA SLEEP EXPERT). I flee. I do get low blue light visors and begin my fight against "insomnia on steroids" alone.
2015 June - 177 lbs
2015 June - I see another sleep doctor who does help me start to realign my sleep habits. No computers, iPhones, blue lights. I get up at dawn and get OUTSIDE. I use low blue light visors, low blue lights (emits red light at night), and slowly start to reset body clock. SLOWLY. It takes years to perfect the recipe.
2015 August - Didn't sleep the entire month. Nightmare.
2015 November - GERD HELL- Another bout of "asthma like" symptoms: difficulty breathing, heart racing, palpitations, cough/wheezing, heaviness in chest, blood pressure shoots up. GERD nightmare. I see cardiologist who sends me to hospital for observation. Turns out I had aspirated some fluids into my lungs from GERD because I've slept FLAT, so even though I cut off eating after 3 pm I still have to take rolaid's, ant-acids and bendyl. After night in hospital BP DROPS (I am sleeping with head elevated.). I am prescribed Protanix to decrease acid to decrease GERD attacks. It makes me so ill I end up LYING down anyway, when I need to be UPRIGHT. I stop taking it and order a SLEEP WEDGE and within a week GERD symptoms abate and essentially disappear. NO more antacids, no Tums, less benydryl. A $40 dollar 8" inch sleep wedge. WHY didn't anyone suggest that earlier? Or at all?
2016 May - Metformin Hell: I report the following symptoms after taking Metformin twice a day; " Severe energy crashes, I can't move, need to lie down and sleep for HOURS. Heart races a bit. These energy crashes seems to occur 2 hours after taking the meds. Muscle weakness. Having difficulty getting up stairs, limbs feel LEADEN. Same on my bike. Body feels inflamed. Skin rash acts up. Nausea at times, mild and severe. Mini shocks through ligaments/muscles. Constipation, memory issues, weight gain. Feels like Lyme. Sort of. I stop taking Metformin.
2016 July - 185 lbs
2016 August - In a letter to my long suffering doctors I report the following symptoms: "Hair falling out in gobs, rapid and sudden weight gain after a year of stability (177-185 in one month April?), increased appetite, (more accurately "limitless"), Dry skin on elbows, nether regions, IMMENSE drowsiness that for the first time coffee has helped rather than giving me palpitations. Muscle weakness, dark bags under eyes, puffy eyes, mild constipation, temperature fluctuations , feeling like heart is racing. LETHARGY, not sleep deprivation kind, brain fog, drowsy after some meals,
2016 September - Extensive bloodworm by endocrinologist who says "It's NOT diabetes" "something else is causing weight gain and symptoms. see Blood Panels
2016 November- Sleep Recipe that Works Best- 3 Years in the Making
To Bed at 7:00 pm and settle down. NOTHING upsetting on Internet Videos Movies 7:30 Low Blue Light Visors Movies Computer iPhone OFF by 8:30- 9 pm All Devices set to: Low Blue Light Screens Phone ringer OFF
SOUND EFFECTS ON: My Favorites: Crickets/Thunder/Rain Reading something bland on iPhone with black screen background. If lucky am dozing off by 9:30-10:30 BLAND movie ON(on iphone near bed turned down to block out light)...NO shouting, gunfire, screaming, violence...SOUND OF VOICES in DIALOGUE seems to KNOCK ME OUT. When movie ENDS I sometimes stay asleep till 3 a.m. or I notice it's QUIET and anxious thoughts creep in. Either way BBC goes ON and 15-20 minutes later I am under and having another sleep cycle. Can even do this sometimes on BAD days. SOUND of HUMAN VOICES TALKING seems to do the trick. BETTER than the ill advised "read" at night UNLESS you are using a low blue light, or watch TV (over stimulation) or MUSIC even, stimulates. SOUND of HUMAN VOICE somehow lulls me to sleep. NOT fool proof BUT I am having MORE "good" days than sleep deprived nightmares for the past year. I do use Dayquil generic and a half a benadryl if I think I am not going to calm down enough to sleep.
THE HERE AND NOW
Control over sleep has improved, with my "recipe". I am now having more good days than bad. But there is NO in between. Whatever sleep cycle I am missing at night (and it always occurs when I do not get first sleep cycle in before midnight) the following day is devastating. This had essentially destroyed my social life as planning is impossible. The effects on my marriage have been equally challenging. I had to resign my duties from the Crown Heights South Association to finish this project, which I hope to resume once the FMT's are underway and I feel better. I have classic "chronic fatigue" syndrome symptoms but as the CDC and other claim it's a mystery disease I have declined to use the label. I am NOT confused about how it happened or where it came from or what I am going to do about it. I am working soley on the project while hoping my mother's health holds out till I get it up and running!!!
2017 July - 187 lbs
Onwards!
