I have wondered what to write about this journey I am on with DH. How have we done it? Because we had to. This is my Lyme resumé. This is more or less just the facts of my illness since 1995.
There are many more things going on in our lives than this: amazingly we travel, sometimes for access to medical help; sometimes with friends and sometimes just us. We listen to live music when we can. We eat good food, and drink good wine, when we can. We garden, we research, we fight for our elected officials. We write.
About what we have learned; about what we love.
We have lost a lot: friends, family, our livelihoods, our home. But given just a tiny chance we live well and savor the moment.
This is my story, so there is no judgement to be passed. I came from the straight and narrow engineering world and western or allopathic medicine. But I have learned some things: there is never a bottom to the humility one so sick must learn; there is no medical stone that can't be turned over, which includes Naturopaths, who look at us in the face, and feel our bodies to see where we need help. It takes a team of medical help and a variety of specialties. It takes money we don't have. It takes energy and will we oftentimes don't have.
Many doctors have saved my life over the years. It has gotten harder to say "Yes!" I'll give it a go. But DH hasn't given up, so neither may I.
Update: I know this is long , and not a particularly writerly read, but it took some courage to get this out in public and just to get out the facts of my last twenty years was a way to break the log jam I have going. Thank you so much
May is Lyme Disease Awareness Month. The CDC recently changed their yearly new case count from 30,000 to 300,000. Because many with symptoms like mine are diagnosed with MS, Fibromyalgia, Chronic Fatigue, ALS, Parkins and other "auto" immune illnesses, the diagnosis of a treatable bacterial disease complex is delayed, leading to intractable illness. As with Borrelios (Bb), the diagnosis of these is with markers and rule outs rather than tests.
Follow me below the Kos doodle to read my resumé. Open your hearts and open your minds, there is no one answer and while I welcome support, please don't pity me.
Possible Time/Place of Lyme Infection
Lived in the Willamette Valley of Oregon 1950 – 1994. Camped and fished for eighteen summers from 1976 to 1993 in Southwestern British Columbia. Spent 15-20 two-week business trips in Massachusetts in 1993 and 1994, often spentweekends on Long Island. Also visited Dutchess County, New York in this time. Do not recall a tick bite or rash.
I garden as a hobby, fish, hike and tent camp.
Symptoms and History
1988-1989 Initial symptoms: sporadic irritable bowel, chronic pain trigger point in upper left back (supra spinatus) that persiststo present. Persistent non-fungal Athletes’ Foot on all toes, worse in winters. prickly heat rashes esp. shins.
1990-1994 Gradually developed multiple pain trigger points and increasing irritable bowel. Tender point over right rib cage was especially painful. Dr. Gowan begins trigger point injections up to twenty in one session. Temporary relief.
August, 1995. Went weekend backpacking in Southern Washington with exposure to cold temperatures and an existing fever. Severe body-wide pain and skin sensitivity began, spreading from the chronic upper left back trigger point through trunk to legs, then arms, neck, and head. This spreading of body-wide pain took about two months. Irritable bowel symptoms increased.
January -- June, 1996. Diagnosed with fibromyalgia. Increasing body-wide pain and irritable bowel. Continuing treatment for multiple pain trigger points. Began having cognitive problems with planning and organization. Began using multiple pain relieving therapies such as massage, exercise, and acupuncture to stay at work. Out of pocket limit passed in September; personal outlay of $10,000 attempt to remain at work. 100% insurance pay starts in September.
Biggest engineering job of my career: complete communications design, bid, construction supervision for Dominion Semiconductor in Manasas, Virginia: a consortium of Toshiba, Japan and IBM, Burlington, Vermont. Design fibre optics, all computer and terminal rooms, Production (Fabrication FAB) and business office communications, entire infra structure for networks.
Crew of 22 and $23 million budget. On time and tested and certified operational. World first design and install.
July, 1996. Took six weeks off work as a Network Engineer/Project Leader on doctor’s orders. Cognitive problems increased greatly. Returned to work September of 1996. Pain relieved by bicycling 12 miles twice daily and hiking.
November, 1996 – February, 1997. Difficulties getting to sleep and remaining asleep begin. Severe fatigue during day begins. Body-wide pain continues. Work full time.
Attend Portland FM/CFS conference, determine not to be “like them”.
September, 1997 – Symptoms increase to the point where required to quit work. Training through Arthritis Foundation on living with FM/CFS, how to present seven week course and facilitate support meetings.
May-June 1999. Diagnosed with pneumonia. Treatment with four courses of antibiotics over two months (Biaxin, unknown antibiotic, Zithromax 2X). Afterwards, partial, gradual remission of “fibromyalgia” symptoms (pain, sleep problems, irritable bowel) over next four months. No sleep medication used from December, 1999 to June, 2000.
February, 2000. Return to work in a half-time, clerical volunteer position. Increasing irritable bowel and sleep disturbances begin. Position is in a doctor's office start up. Create office forms, library, data base, research chronic health conditions.
March , 2000, Sleep study shows five and one half hours of sleep at 60% efficiency. Frequent alpha intrusions and no delta sleep.
April, 2000. Begin having spells of feelings of impending black-outs. Work hours cut back.
July, 2000. Dismissed from part-time work again due to severe fatigue, sleep disturbances and chronic irritable bowel. Doctor/manager noted cognitive difficulties.
August, 2000 to September, 2000. Increased sleep disturbance to the point of almost no sleep. Intense, insatiable hunger. Spells of feeling like impending black-out (syncope). Multiple emergency room visits begin. Over the next three years, 26 ER visits altogether.
October, 2000. Diagnosed with hyper-coagulation. Begin daily heparin treatments. Irritable bowel symptoms disappear in four days. Increased energy, better sleep after two weeks.
December, 2000. Mild fevers and sore throat. Irritable bowel returns gradually. Fatigue returns. Impending blackout feeling (syncope) returns.
February, 2001. Isolated joint pain begins. Positive Western Blot for Lyme disease (IGG & IGM). Positive Lyme Urine AntigenTest. Diagnosed with chronic dehydration, low minerals and electrolytes at Good Samaritan Hospital in Portland. Chief of ER, slow day, looked at heart first. Asked whether I drank water. Constant thirst. Tracked intake for next week. Averaged 80 oz daily. Back in ER next weekend. Low fluids.
Attempt to make appointment with Infectious Disease Specialty Group, Providence, Portland, Oregon. I am told “we do not seeLyme disease patients.”
Evaluation by Infectious Disease Specialist, Raymond Braccis, Good Samaritan Hospital, Portland, Oregon. He conducts an ELISA for Lyme disease which is positive. He orders confiming Western Blot. He leaves a phone message saying, “You do not have Lyme disease. Have a good life.” Later, I obtained results of the Western blot and find that the laboratory said the sample was not acceptable to meet lab standards and the Western blot should be repeated.
Consult with Dr. Townes, Infectious Disease, OHSU. He reluctantly sends serum sample to Stony Brook, NY rather than use OHSU lab, but tells us he is highly dubious I have Lyme disease. He says, “If something is not in a medical journal, it does not exist.”
March, 2001. Positive ELISA from Stonybrook. Leave for NY to obtain knowledgeable care and because of lack of response from Oregon Infectious Disease doctors. While there, Dr. Townes calls, quite surprised that Stony Brook tests are positive. He says he wants to be informed of what I find out in New York. Dr. Townes stops returning phone calls from this point forward. Begin IV fluids and vitamins.
April 2001: Croton on Hudson, third positive ELISA.
May, 2001. Begin diagnostic work-up on Lyme with Dr. Kenneth Liegner. Positive Western blots for Bb show Bb specific proteins but not CDC’s five required bands. Hickman central line catheter installed to facilitate hydration and delivery of vitamins, minerals and other essential elements. Remarkable improvement on high doses of Vitamin C iv.
June, 2001. SPECT scan from Columbia University shows moderately severe hypo-perfusion throughout the brain heterogeneously, including the grey matter. MRI of thoracic and cervical vertebrae shows desiccation, some spur growth toward the Thecal sack and some protrusions. Urine, serum and spinal fluid samples for Bb negative.
July, 2001. Begin oral Minocyline 50 mg every other day on my dad's birthday. First three weeks very sick and severely depressed. Typical die-off sometimes called a "Herxeimer" reaction. Fiancé quits job at Intel to take care of me in NY. We stay at my cousin’s on Long Island.
August, 2001. After three breaks resume Minocycline on different generic, order brand name in liquid suspension form. Improvement in symptoms and energy. Neurology review, Carolyn Britton. Dr. Britton says onset was consistent with infection of the spinal ganglia. Occupational Cognitive tests, Felice Tager, neuro-psychologist, performed that shows cognitive difficulties consistent with Lyme disease. Both at Columbia University. Heart Block and partial infarc. No damage. Resolved later in remission.
September 10th, 2001. Driven home from NY to Oregon beginning Sept. 9th. Very difficult trip. Across from Chicago O'Hare when 9/11 attacks occur in NYC. Arrived in Hood River Sept. 20th. Begin home infusion of IV normal saline as needed.
October - November, 2001. Titrating up on oral Minocycline prescriptions from NY doctors. Various symptoms come and go. Most concerning were very intense hunger, gagging and dry heaves. These settled down with increase in dose. No Oregondoctors willing to support treatment. So I made my own dosage decisions
December, 2001. At maximum dose of 200 mg daily in split doses. More symptom improvement, some old symptoms return: such as pain. New pain in joints. Varicose veins peripheral calves rapidly getting worse, vascular surgeon closed them. Fought insurance which labeled this procedure as cosmetic. Dr. Liegner saved my life.
Spring, 2002. We approach Dr. Kurz at Good Samaritan, for primary care. We present him with a list of over 22 symptoms in remission since commencing Minocycline. He deliberates over nine visits and finally refers me for a barium swallow test inspite of no regurge or acid reflux. He comments that specialists are very backed up and under represented as “Oregon is a highly regulated state”.
Summer, 2002. My sister’s neighbor in Portland is an infectious disease specialist and teaching professor at OHSU. He agrees to present my record to the Infectious Disease department at OHSU. Dr. David Gilbert refuses to see me and, based on tests and history, says I do not have Lyme disease. Although data is not published, doctors relate Dr. Gilbert says he has tested 1,000 ticks and never found Lyme disease.
January to August 2002. Continue oral Minocycline and home IV saline as needed. Usually 500 ml, 3-5 times a week.
August-September, 2002. Nephrologist, Dr. Kelly, suggests test where IV saline is discontinued for eight weeks. Weight drops from 132 to 120 pounds despite eating 2500-3000 calories a day. Nephrologist says no clinical signs of dehydration based on blood tests. Suspects intentional starving. Refers to OHSU specialist for testing of Celiac disease. Specialist test for proteins found with intentional starving (not disclosed to me). None found. Other disorders not considered. Chart notes of primarycare doctor, Kimberley Stutzman, begins to reflect possible self denial, Munchhausens. This illness is possibly .03% in population. No referrals to psychiatrist.
September 2002. Voluntarily discontinues Minocycline as most typical Lyme symptoms, such as pain and food allergies, are gone or greatly reduced.
October, 2002. During and after restoring weight to 130 lbs., through home infusion of IV saline, unexplained fever of 101-104 for three weeks results in hospitalization for one week. SED rate 98, anemia. IV fluid discontinued in hospital and hospital documents 500 to 1000 ml more urine per day than oral liquid intake. Sent home from hospital and voluntarily discontinues IV saline. Fever and extreme weakness returns. Weight drops to 116 lbs. Admitted to Good Samaritan Hospital for nine days with no treatment other than IV fluids. Extensive testing for multiple infectious diseases, including African illnesses, but no Lyme disease tests conducted. Dr. Crislip, Infectious Disease, Good Samaritan, writes that “Lyme disease is vanishingly rare in Oregon.” Dr. Raymond Braccis, Good Samaritan Hospital Infectious Disease, yells, waves his arms in hospital room in front of hospital social worker insisting that I have catheter removed and leave hospital. He states that I don’t have Lyme disease and that I don’t need IV antibiotics. We did not say anything about Lyme when we came to ER. He had looked at previous year’s chart/lab and assumed I was using the IV for antibiotics. We were most concerned with fluid wasting. Primary hospital doctor, Marilyn Replogle states she believes I have disturbance of hypothalamus-pituitary axis and that she and four other doctors on care team disagree with Dr. Braccis.
Dr. Braccis says he will go to hospital administration to get his way and is successful.
One night resident ordered fluids before catheter removal. Catheter is removed and patient dismissed with no follow-up or treatment plan. Referred by resident to psychiatric ward at Providence, that would not accept as patient as Somataform Disorder is not a high enough level of mental illness. Friends stand around my bed to be sure nothing dangerous is undertaken. Prayer circles held in many places.
Husband retrieved chart notes and labs from Good Samaritan Hospital: he is almost physically ill from reading comments in my charts. Paraphrased comments (available in original) – Anemia could be caused by patient using IV line to bleed out enough blood to create low count. At this time my IV was completely under care of in hospital IV nurses who would have noted caked blood in line. I had no supplies to flush line. High SED rate could be caused by patient injecting barnyard feces to create inflammation. ???? Orthostatic Hypertension was recorded several times daily on in-room computers. Thirty point drops from lying to sitting were input. This is a standard indication of low fluid volume or hypovolemia. All records of these notes were gone.
October, 2002. Fly to Baltimore seeking help from Johns Hopkins after consulting George Hong, MD. Johns Hopkins internal medicine doctor is extremely concerned about fluid balance. Refers to endocrine specialists but none available for 6-8 weeks. Return to Oregon two weeks later.
November, 2002 Find endocrinologist in Reno, NV, Dr. Robert Fredericks. Specialist in fluids (NASA consultant). Extensive endocrine testing. Finds three times normal levels of Human Growth Hormone output from Pituitary after Arginine push test. Hypothalamus is suppressed so fluid management hormones are not expressed. Installs PICC line for hydration. Hijacked a girlfriend who thought she was coming to take care of me at home. These decisions are often made in extremis.
December 2002. Daily HGH prescribed that gradually alleviates fluid balance problem. Lyme symptoms of pain and numbness return. Restart oral minocyline with great gastric difficulty. Christmas in Reno. Stuck at 2200 feet because of Hypovolemia. Horrible cinder block apartment. Friends visit on rotation, and the MA becomes a friend.
February, 2003. Begin IV antibiotics for first time (Levaquin). After 4-6 weeks of significant Herxheimer reactions, symptoms improve.
March, 2003. Attempt IV minocycline resulting in gastric and venous pain.
April, 2003. Phlebitis develops in vein where PICC installed. PICC removed and Groshong central catheter installed. Fluid balance stabilizes and weight moves to 126#. Easter in Reno. Dr. Fredericks saved my life.
May 2003. Fly to Huntersville, North Carolina to see Dr. Joseph Jemsek, MD, ID, IM. Since I have sensitivities to penicillins, he establishes an alternate antibiotic plan, including IV Primaxin, IV Cindamycin, oral Levaquin and Zithromax, Flagyl or Tinidazole, possibly IV Zithromax. Move into apartment across from clinic.
June 2003. Begin titrating up on IV Primaxin. Tolerating well, and fluid balance symptoms gradually reduce.
July 2003. Develop intolerance to the IV antibiotic diluent, saline. Move to combo of oral Zithromax and Levaquin. Continue to look for solution to IV intolerance, but overall symptoms continue to improve. Overall functioning gradually increases to about 40% of normal .
August 2003. Some increasing problems with hypohydration since discontinuing IV Primaxin. Overall functioning, however, continues to improve from about 15% of normal (May, 2003) to about 40% of normal when not Herxing from pathogen die off resulting from taking antibiotics. Resume on IV 1800 mg Clindamycine and 500 mg Zith. Commence four month Herx, including body-wide rashes, activation of Herpes Zoster, peripheral neuropathy. End result: much improvement.
Occasional three (3) atmosphere dives in local navy compliant derived oxygen Hyperbaric Oxygen chamber. Important pushing of antibiotics into interstitial, low oxygenated tissues such as tendons and ligaments. Dr. Jemsek saved my life.
Summer 2003. Groshong becomes occluded, and is removed. Oral antibiotics ongoing.
Sept – Dec, 2004. Wedding with fiancé and step daughter in a three ring ceremony and move back to Oregon home first time in two years. Continue oral Levequin and Ketek.
December, 2004. Return home to Oregon. Required to establish with California doctor, Steve Harris, for treatment, who says I am eighth patient to come to him from Hood River. Begin experiment with supplement product, Reliv.
March, 2005. Establish with Dr. Steven Harris in Nevada City, California. Try Samento one month, no reaction. Symptoms at start: quick plaque buildup on teeth; hair falling out and thin; many floaters in eyes; skin wrinkling neck and fore arms; allergies in nose, eyes, mouth and throat itch; hands and forearms curl esp at night; muscle pain forearms; meridian pain outside both thighs hip to ankle; hard to sleep from pain; neck c5-c6 hot and low range of motion; lower lumbar pulled and sore; light sleep; irritable; knees and elbows sharp pain; wrist and ankles painful; no periods, but migraines every 29 days; smokers’ cough/laugh; run out of air talking or singing; 2 hour physical work limit; when out of energy, difficulty thinking orsaying right words; lower left teeth molars and gums are sore.
April, 2005 Start Ketek. Psych evaluation with Dr. Felice Tager, NY Presbyterian. Results: one third better, one third about the same, one third worse. Some abstract learning near 2nd percentile. Lengthy rejection of disability claim. Husband files
and wins back disability through federal ERISA case. One of the few federal level cases won
May, 2005 Positive Babesia, WA-1 Indexed in Klickitat county Washington. (now named duncanii, American Malaria). Big indicator this set of infections was acquired in the Pacific NW.
September, 2005. Begin anti malarials for Babesia: Mepron, continue Ketek. Trial of Septra stopped, allergic – throat swelling and itch.
December, 2005. Add Tinidazole, anti Giardial believed to beak open the L-form or dormant cyst of Bb so antibiotics can reach spirochetes.
Year 2006. Continue same. Temperature regulation becomes normal, but only lasts three days if doses are missed.
February, 2006. Restart Tinidazole seven weeks.
April, 2006. DC Tinidazole, continue Ketek, Mepron, add Primaquine.
August, 2006. Add in Zith, begin Herx/die-off reaction.
September, 2006. Mid-Sept, because of Herx, DC (stop) Mepron, Zith, Primaquine. Tent trailer trip through California redwoods with good friends.
October, 2006. Start Valtrex, 600 mg Clindamycine, 4x daily for four days, ten days off. ZMax 2 gram every five days.Primaquine, Plaquinel (ok from opthamalagist no known side affects up to 750 mg daily).
February, 2007. Add Malarone, doxy (never took because of difficulty balancing meds, supplements with GI problems.)
Spring, 2007. Climbed Columbia Hills, 1000’, 3 miles. Extra ordinary ability and no lasting pain or fatigue.
Summer, 2007. Increasing ability to drink small amounts of alcohol; dairy intolerance gone; better energy; brighter mentally.
Some foot burning and peripheral pain returning toward fall.
November, 2007. Boston medical conference, learned about Malarone. DC (stop) Malarone, back to Mepron, with Valtrex,Primaquine, Plaquinel, ZMax, 2 grams every 5 days. Foot, leg and arm pain, much like original Fibromyalgia coming back.
December, 2007 Our traveling companion, a newer LD patient, with many severe pain problems, is told by Columbia Gorge Pain Management that as long as she insists that she has Lyme Disease they will no longer treat her for pain. They cannot agree with her treatment plan. We begin looking for a doctor who has pain management collaboration. We look at Dr’s Martz and Harvey in Colorado Springs. They have stopped practice to write and educate other doctors. Constant heat and chills, clammy, losing stamina.
January, 2008 Establish with Dr. Martin Ross in SW Seattle, who has an S/O with LD. He is reviewing entire history and believes I have a resistant form of Babesia duncanii (WA-1 first identified near the Klickitat). This marker for “American Malaria” is a clear indication that the infections I have are local to the NW. Many strains of Babesia are now being identified in the US and Europe, but the labs are behind in the reagents required to detect this organism in people. Many dogs in Oregon contract this illness yearly.
April, 2008 Transition to new mix of medications specifically targeting Babesia. (Already failed Mepron treatments earlier.)
February- November, 2009. Prep for IV antibiotics - PICC line installed by Via Interventional Radiology in Seattle. Many problems. Line was too long, interfered with heart valves, several emergency room visits. Line was used for IV nutrition and one trial each of IV vancomycin and septra, which seemed to cause allergic type reactions. Line was replaced by Swedish Hospital but clotted shut about a month later and was pulled.
2010. Functioned at 40-60% entire year.
Take minocycline infrequently, maybe 5 day course each month, whenever vertical orientation problems began "mal de barqment". Some flu-like symptoms in January with cough, but do not go to doctor. Rehabbed husband’s family home, gutted to landscaped and staged Feb - April. On market in May. Did planning and product orders inspite of four week flu/upper respiratory illness in March.
November 2010 trip to Midi-Pyranees, France. Took over marketing house for sale.
January - June 2011. Bad cough acquired in November, 2010, in France, increases feeling of mass near/underneath sternum, coupled with acid regurgitation, foggy thinking, spine pulled to side, overall weakness and fatigue. After several pcp (primary doc) check box tests are negative; SW Washington Med Center MD unable to diagnose. In May, Dr. Susan Allen, ND, diagnoses hiatal hernia and provides short-lived, but significant relief by physical manipulation.
May 2011: Sold husband's family home, paid off mortages, medical bills, started major deferred repairs on primary home.
July - November, 2011. Neck, back, and hernia seem to interact to cause scoliosis, misalignment. Chiropractic treatments help, but alignments start holding for shorter and shorter periods. Same is true for hernia physical adjustments.
July, 2011. Fell over tool kit. Hit floor hard. Started cascade of increasing symptoms.
November, 2011. Flu-like illness begins. Lasts 2-3 months.
February, 2012. Foot rolls unexpectedly, seemingly from weak ligaments.
February - May, 2012. Frequent hiatal hernia, back problems. Begin major remodel of our home.
May 17, 2012 to July, 2012. Catch Pertussis-type illness that is going around Hood River Valley. Initial fever, severe chills, bad coughing after five days. Develop pnuemonia. Treated with courses of Zithromax and Biaxin.
Instigates symptoms:
headache- pressure on temples and extending up over top of head
neck pain or stiffness (same thing for lumbar and thoracic) vision dimming occasionally, word finding problems, can hardly walk from weakness and coordination problems; chew, swallow, speaking problem from coordination and weakness
stupor/ sleepiness between episodes, feel drugged or drunk without fun part; agitation/hyper irritability; air hunger; sensations of extreme cold (but not chills); difficulty orienting vertically, but not typical dizziness; feeling a lump in the esophagus,near sternum; significant weakness in below the knee and below the elbow;
trouble using hands, in extreme episodes, shaking starting with arms; banding (intense squeezing band) around upper ribs (happened late, 4 hours in, on July 1, 2012); sense of pre-anaphylaxis: itch under chin; opening to throat and airway; minor rashes on some episodes, but nothing like full-blown allergic-type hives; occasional eyesight dimming; upper and lower left lip numbness; left chest wall neuropathy;in severe episodes, urgent need to move bowels and urinate.
A spinal MRI did not detect any lesions.(Looking for MS). Several medications provided short-term symptom relief, but none kept the episodes from reoccurring, often within a few hours. These included oral steroids, IV steroids (Solu-Medrol), epinephrine (EpiPen), andanti-histamines, H1 and H2 blockers.
For a period of a few weeks, daily IV glutathione and intermittent minocycline diminished the frequency of the episodes, but this stopped working. As daily vein puncture was becoming more difficult and future IV antibiotic treatment probable, a central line was installed.
Gradually we noticed that the episodes were correlated with food. Looking back, at first, the episodes were starting a few hours after eating. Then, they started to come a few minutes after eating, almost always accompanied by mouth and throat itching. The type of food did not seem critical, but things like dairy and eggs were somewhat worse. Even bland, typically non-allergenic foods like a few spoonfuls of white rice could start an episode that would last eight to ten hours.
In July, with no medications helping, I went 13 days on a water-only diet to avoid the episodes. This greatly reduced, but did not eliminate the episodes.
Upon recommendation of a friend, ER doc to go to a city with large hospital systems, with two emergency room administrations of Solu-Medrol, we were able to make four-hour drive to Seattle seeking more comprehensive, better medical care.
By this time, even the mechanics of swallowing water were starting to trigger episodes. Marty Ross, Lyme-treating doctor in Seattle, was unable to diagnose or treat (no antibiotic was tolerated) the problem and after four days of daily visits, arranged a hospital admission through a hospitalist to Swedish Hospital, forwarding a “neuro-psychological” diagnosis as one of 12 posssible differentials.
Received no treatment, as I was put on a psychiatric watch, other than some IV saline during the three-day stay and there was no investigation other than an endoscopy that showed no obvious problems other than upper intestinal inflammation. Requested a food challenge in hospital so crash cart could be at the ready. The hospitalist said since there was a DNR in place, they would not intubate or resuscitate. Fired on the spot.
Upon discharge, Ross made a referral to Dr. David Buscher in Redmond, Washington, a specialist in Environmental Medicine who handles difficult cases. Eating and drinking were still significant problems which allowed an average of 300-400 calories a day. Dr. Buscher diagnosed mast cell activation. He is greatly concerned about the chemical orchard sprays continually used around our rural house in Hood River. Treatment with chromolyn was not successful, but oral dosing with Ketotifen, along with a careful diet, allowed achieving reasonable diet. Saved my life.
Fall, 2012: Continued improvement in regaining food groups tolerated on Ketotifen. Major groups not regained: all dairy and eggs.
Established with Bastyr Institute of Naturopathic Medicine teaching teams under Dr. Steven Milkis attending, faculty, for weekly physical medicine.
October, 2012: Flew to DC to see Dr. Joseph Jemsek for first time since 2004. He took a new history, exam and we rescheduled for January to begin treatment. Insisted with Dr. Buscher, no return to the Sears Kit House because immune system was too challenged with major infections and biocides.
Year 2012 ER total: 48 visits to ER to wait out symptoms; 14 admits.
Winter, 2013; January, 2013 - Flew to DC (went to inaugural) to set up a treatment plan on the assumption of improved tolerance to anti microbials. Prescribed Meropenem, Minocycline, Tindamax on a pulsed four week plan which included a rest week, repeated over a two month period. First two one gram doses of Meropenem were administered on Tuesday then Thursday, no negative reaction and after needing a rest the first afternoon, amazing energy and clear thinking.
Third one gram dose administered ten days later, with Walgreens IV nurses, went well. 10 hours later, severe reaction, requiring visit to ER. Derailed timing and plan.
February onwards: Dr. David Buscher began prescribing and providing desensitization distillates for Meropenem and Minocycline. Reacted to both, so began with Meropenem only. This was ok. Either alone was ok, but not both simultaneously. Subsequently added dairy distallate and tolerated also.
Jemsek ordered Gallbladder study: Ultra sound 1st; negative. HIDA 2nd; also negative.
Couldn't be helped with standard western meds. Reacted to each one and allergic to safety meds as well. Full stop.
March. 2013 Bard Triple Lumen failed and replaced with single lumen CVC, Overlake Hospital, Bellevue, Washington.
May, 2013: MRI for 8 year pain in lower gall bladder, to rule out intestinal masses. No colonoscopies for 9 years. Can’t take prep due to reactions. MRI, clear. Best guess: adhesions to old appendectomy scar. Back to Bastyr for work to break up scar tissue.
May 2nd, 2013: first visit to Anderson Medical referred by Dr. Milkis for IV supportive and anti infective therapies. Initially couldn’t take IV B vits, Magnesium or Vit C without Benedryl. Eventually moved to Glutathione with good results. Moved up amounts of each type of support and added new ingredients as tolerated. Taurine, Selenium, Methyl Folate and B12 to correct a methylation pathway disorder found by blood tests.
July, 2013 Tolerating increasing doses and dropping need for supportive Benedryl, added in 30mg, 60mg, then 120mg Artisunate for Babesia. First dose, high energy following day. Higher doses, need sleep until the next day. Then higher energy until the third dose. Definite small noxious detox sweat day five after each treatment. Last two doses, some noticeable die-off/Herx symptoms. Regression of tolerated foods; immune system reactions. Developed reaction to Benedryl, and possibly Glutathione. Last dose, forced food and water fasting to lower reactivity.
Essentially treatment was working but too aggressive, and with hyper immune system, no way to cope with microbe mortality, increased inflammation, and no available rescue support.
July and August 2013: Establish with LymeMD in Maryland. No progress is being made, and no treatment for underlying infections will be a one way street. He is disturbed that we have come so late in the game and sees few avenues of treatment. He does however recommend after second visit, mild Hyper Baric Treatment on a daily basis. Buying one of our own is the only way. We visit the factory, and begin looking for a used newer mode. Biopsies with neurologist in Anapolis, shows Progressive Polyneuropathy. Treatment is IViG, immunoglobulin. None of my doctors feel I will tolerate it. I wait.
October 2013: Buy a mHBOT chamber from the manufacturer and have it shipped to our Seattle location. Continue weekly body/spine straightening at Bastyr teaching Institute.
December 2013: Bad dislocation of right shoulder, requires intense work, but no surgery. Minor breaks, begin to heal.
Continue gutting house with help of local contractors and friends.
February 2014: Another trip to France to confirm that we want to move, as we have to sell our home and cannot continue to rent a condo in very expensive Seattle. We book a rental for September. And begin making plans. We can't afford to stay in a large city in the US. What OPOL said.
Late winter and spring 2014: shoulder slowly repairs; pain levels higher than expected given recovery; start mHbot at 4psi/1.3ATA one half hour every four days, and move to same pressure and time every other day.
April 2014: Re-open question of IViG. Amy Tan has the same underlying infections, became bedridden, hallucinated, couldn't write two books after "Joy Luck Club". Didn't recognized her husband. IViG allowed her to get to Borreliosis (Lyme) treatment. Apply for Medicare support of this therapy. Bad enough they allow one year of treatment; Humana MediGap follows. Provider writes off remainder as we are under water every month.
May 2014: Preparing for IViG to commence with a weeklong trial third week of June.
How will it go? How can it be the best possible outcome? Will I suffer?
If we make that far, can we do this while living in France?
Dear Daily Kos community, pray with me; give your healing thoughts a try. I carry SaraR and winglion's quilt, and the well wishes of many here. This is my shot.