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.
Lyme Test Results
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
THANK YOU DR BRANDT!
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!