Chapter 1: Over 15 Years of Odd Ailments-Medical History

Medical History: Shown below is the letter that I sent to a homeopathic doctor that came highly recommended. At this point in my life I was sick of doctors and I was very defensive with new doctors (and at the end of my rope); however I knew she could be trusted so I poured out my heart and “body” into this letter.   I look back on this letter and I shiver to think about how all the symptoms that I have listed are those of Chronic Lyme disease and tick borne infections. Lyme is known as “the great imitator” because it can mimic hundreds of other diseases. Listed below is my point, exactly…(I have highlighted each symptom that coincides with Lyme disease and tick borne infections.)

January 2011

Dear Dr. O,

Thank you for getting back to me so quickly and I would love to meet next week.    I wish that I could sum up my medical history and say “in a nutshell it is ____”, but I have had so many different issues it is easier just to list.  I would say my current issues are my breasts (inconsistent inflammation, but not pain), bowels (mainly pain and irregular) and thinning hair.

I know that my way about me is extreme.  I am extremely energetic, I am extremely helpful to people, I can get extremely anxious, extremely stressed, extremely fatigued and when I get sick it is extreme and unusual.  I have noticed these extremes since college (1993-1997) and I have had many theories about myself over the years. These theories include “allergic to my female organs”, hormone imbalance, bi polar, adhd, allergies, irritable bowel syndrome, chronic migraine and menopausal side effects.  I know that I sound very serious when I list these things, but what you will find is that I am very realistic about myself. My friends, family and I love to laugh about my “isms”.  Some of the things I have experienced are so unusual that it is comical.

Background….

Middle school and high school I had the best upbringing.  I loved every part of life and when I stressed it would be over normal school stress and I only suffered sinus infections.  In 1993 I had reoccurring strep throat and had a tonsillectomy in August of 1993.  This surgery also seemed to cure my sinus infections.

All my life I was a dancer and gymnast.  Although I was thin I did not suffer through the trauma of eating disorders due to the best coaches and dance instructors.  However, I do think dance and gymnastics were the downfall of delaying puberty and my period problems in college.

And now the problems begin…..

1993-1994:  I started college, gained weight (10lbs) and my periods became inconsistent. Many months I would skip my periods.  I also started on and off different birth control pills from 1993-1996.  The pills increased my breast size and gave me extreme breast pain and also made me feel crazy.  My breasts have never been the same since. I also had my right knee randomly pop out for two weeks and I needed crutches.  I had never had knee problems before.

1995 : I met Josh (my husband).

Josh and Kelly-1995

We were young, crazy and in love, but even that did not stop unusual symptoms.  I started to have extreme cases of constipation, bloat and diarrhea and my periods continued to be irregular. I also started to have reoccurring urinary tract infections.

1996-1998:   I continued to have irregular periods, bowel pain and painful breast swelling.  I started to have anxiety from all the unpredictability of my body and was placed on Xanax. I also had one more episode of my left knee popping out, but it was not as bad as the last time (lasted 2 days).

1997-1998: Saw a homeopathic doctor in Concord, MA and was given 3 tablets (?) that dissolved on my tongue and it was the only time my breast swelling was decreased for 6 months.

1998-1999: Three months after marriage I had severe abdominal pain, weird vaginal discharge and painful breast swelling (again).  After meeting with a million different doctors, I was finally diagnosed with endometriosis and painful swelling of the breasts.

Endometriosis-1999

Endometriosis-1999

Feb 1999: I had a laparoscopy to remove endometriosis from my uterus and rectum (apparently it had spread into my rectum, which, explained why I felt like a knife stabbed me every time I sat down).

Only 1 month after the laparoscopy, I developed ovarian cysts. I was placed on Lupron for 6 months.   The Lupron shots helped my uterus feel the best it had since high school and breast swelling decreased; however the menopausal side effects were crazy.

Left: Endo/IBS pain-1999 Right: 6 months pregnant-2000

Left: Endo/IBS pain-1999
Right: 6 months pregnant-2000

Feb 2000 I became unexpectedly pregnant.  I did not know if I would even be able to have children due to all my uterine problems.  I had a horrible pregnancy.  My son was 8.3, but he sucked the life out of me.  I threw up a million times a day until I pushed him out and had low blood pressure. No doctor could explain why I was so sick.

Tyler 11/21/2000

Tyler 11/21/2000

May 2001:  I became pregnant 6 months after my son was born.  I had a miscarriage in July 2001.

September 2001: 10 weeks after the miscarriage I became pregnant.  It was another awful pregnancy.  This time the vomiting was worse and my blood pressure was extremely low (and has remained low).

IV during pregnancy

IV during pregnancy

My second son was a healthy 7.6, but my body was wasted.  It was like I was allergic to my pregnancies.  I also began to have swallowing difficulties and continue to have.

Ryan 6/28/2002

Ryan 6/28/2002

June 2002-December 2002: Developed such horrible vertigo (they thought hormonal from the pregnancies) that I was put on Sarafem for a short time. Vertigo eventually stopped on its own and I stopped Sarafem after only 3 weeks.

Constantly wore headband for vertigo

Constantly wore headband for vertigo

March 2003: The endometriosis came back even worse.  This was my last period ever and I began Lupron shots for the next 2 and ½ years, as well as, Paxil for anxiety and Wellbutrin for a few months. The breast swelling was decreased on the Lupron, but hot flashes and night sweats began.

June 2005: I had a hysterectomy to remove the endometriosis and adenomyosis .  Best thing that has ever happened to my body and the breast swelling stopped and I went off all medication.  The recovery was tough and I had extreme weight loss in a short time (10 lbs in 2 weeks).   I always wondered if this is where my hair problems may have started and if where my immune system started to need to attack other parts of my body.

Total Hysterectomy-2006

Total Hysterectomy-2006

Spring 2006 and Spring 2007: I would develop allergies for 6-8 weeks (never had them). The allergies would come on so fast and so extreme that I would have to be taken to the ER.  My face and eyes would swell shut.  I was placed on allergy medicine and eye steroids. My left knee also randomly popped out again.  I wore a knee brace and it was fine after a few days.

February 2008: My bladder hemorrhaged.  It was the worst pain of my life. The pain was so bad that I passed out in the ER waiting room.  I was diagnosed with Interstitial Cystitis and Painful Bladder Syndrome (IC/PBS).

April 2008: I was put on Concerta in hopes to reverse my immune system and possible ADHD.  I developed a yellow spot on my scalp, extreme scalp itching, lost even more weight and more hair thinning.  My hair has never been the same.  I stopped Concerta December of 2008 because I could not handle the side effects and it did not seem to be helping any.

June 2009: I developed an unusual pain in my left side and my stomach swelled.  My doctor thought it was a nerve ending in my scar tissue from the hysterectomy and gave me a few nerve blocks.  After the nerve blocks I would feel nauseous and begin to faint.  Within days of the last nerve block, I suffered vomiting and the worst head pain of my life (I honestly thought something was going to burst in my brain); however, my stomach was not bloated or hurting anymore lol.  I was rushed to the ER and given a spinal tap.  I was diagnosed with chronic migraine (never had that before). I took Excedrine migraine and started feeling better; however, a few days later I was back in the ER because the base of my spine hurt so badly.  They found blood at the base of my spine.   I was sent to Lahey Hospital for a week (and had a 5 hour procedure to find the cause).  To this day I am a case study because they could not figure out how the blood got there.  I was bed ridden for 6 weeks until the blood dissipated. During this time my legs were extremely numb and tingly.

2010: has been fairly calm( hurray!); however my bowels are irregular and the bloating can be painful (had ct scan for diverticulosis). I was diagnosed with irritable bowel syndrome. My scalp is itchy and hair thinning and my breasts inflame every so often.  The past 2 years I have had fewer problems with allergies, but I am now developing reoccurring sinus infections and I am having reoccurring sore throats and laryngitis (I live on cough drops). Could it be vocal cord atrophy with menopause? I also have extreme itches under my arm pits and chin/neck. My scalp is also extremely itchy. I have found that I can only use shampoos with ammonium chloride (Suave or V05 shampoo). I have been told that these shampoos are the worst for your hair and can strip your hair, but the more popular shampoos have sodium chloride which seems to aggravate the itching. I have no idea how I figured this out lol.  I am also finding that I wake up in the middle of the night (sometimes sweaty) dizzy and my ears are ringing.  And speaking of sleep, it is inconsistent. It ranges from insomnia one moment to other moments/days where I am so physically exhausted that I sleep all day and still do not feel rested. I am not a big drinker, but I have found that when I have one drink, I feel instantly buzzed, dizzy and stupid.  I have never vomited from drinking, however, recently, after only one or two drinks, I will vomit and the next day I will have the worst headache, vertigo and nausea. Maybe I am just allergic to alcohol which is fine, but it is just odd.

Please know that I am not trying to dwell on what has happened to me, but simply trying to give you crazy background history.  I feel like every 6 months my immune system has to attack something in my body and I develop something weird.  I feel like when something is finally at bay, my immune system wants to start in on something else.  Although I can easily laugh at myself, I am tired of hearing “Kelly your sick again” or “Kelly you have the weirdest things happen to you”.  I am tired of everyone trying to come up with reasons for my problems like “you need to take more vitamins or “you’re just too busy, you need to slow down”.  I just want to have some consistency with my body (whether you think it is physical or psychological or both) especially for my children and my husband’s sake.  I feel like they deserve it the most.  I am not looking for you to fix me or cure me, but just some new theories or pointers in a certain direction would be so helpful.

Side note:  My mom had a hysterectomy at 40 due to heavy bleeding. She has thinning hair and she has elevated anti nuclear antibodies with possible Lupus and Reynaud’s Syndrome.  I have had blood work in the past 2 years for thyroid, hormones, elevated ana, iron and other things, but so far everything is normal.

Since this email is the size of a small book lol, you are welcome to take off some of the 90 minute initial consult time.

Thank you for your time,

Kelly Downing

Please continue to my next post More Odd Ailments 2011-2012…

Here is a website that lists symptoms of Lyme Disease and Tick Borne Infections (If only I had known!)

http://www.lyme-symptoms.com/LymeCoinfectionChart.html

http://www.lyme-symptoms.com/1Lyme-Symptoms.html

http://www.lymeinfo.net/coinfectionarticle.html

lyme awareness

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