MY MEDICAL HISTORY DATING BACK TO THE BEGINNING OF THE LYME-PRODUCED SYMPTOMS

This is my personal journey along the long and winding road that is Lyme Disease. I hope the links/info may prove helpful to others ~~ Mo

UPDATED: 6/1/08 Current Status Jump to end of list for current info.

Previous Medical history:

8/10/94 Dr. Stuart Sackstein (OB/GYN)

Went to see him for standard checkup - let him know how I was feeling (moodswings, fatigue, headaches). I was thinking hormonal imbalance? Ran the above bloodwork. Put me on hormones which I took for two years without any improvement. This is the oldest record I have of lyme testing/symptoms. I beleive infection may have been early '94, sometime before this appointment. I remember getting the flu at some point. That may well have been the intial infection. However, it is possible that I was bitten sometime during/prior to my 2nd pregnacy, looking at the symptoms that I had during the pregnancy. My son appears to be healthy, showing no signs of latent lyme.

12/20/94 Dr. Catherine C. Alcarez, MD

NOTE: I don't recall ever having a bladder infection before this point and have since had them chronically, which is why I label this as the beginning

1/30/96 Dr. Walter D. Crane, DO PA (GP)

NOTE: This fits with family medical history. Have had this since childhood. Father was the same until he developed diabetes in his sixties. I suspect from reading that a history of increased hypoglycemia wears out the pancreas until eventually you develop hyperglycemia.

12/29/00 LabCorp Bloodwork ordered by Family Medicine Center (GP)

8/23/00 Family Medicine Center (GP)

This was likely either a resurgence of the lyme, or reinfection. I'm outdoors a lot in the summer. I can't even begin to count the number of ticks I've removed over the years. I wasn't as outdoorsy when I was younger, so I figure I risked exposure from about 1990 on. I'll have problems with Asthma for the rest of my life. My symptoms are mild at this point. I have difficulty breathing after running a short distance. I don't weeze. I develop chronic coughing.

10/6/00 printed out list of lyme symptoms

This is where I stood as of October 2000.

10/11/00 Lab Corp Blood work ordered by Family Medicine Center (GP)

10/25/00 Lab Corp blood work ordered by Family Medicine Center (GP)

11/08/00 Lab Corp Blood work ordered by Family Medicine Center (GP)

Arrggh! The frustration! They aren't finding anything to explain why I am feeling so lousy. The nurse practioner, who I've seen at the FMC most of the past few visits, trys to convince me that I'm depressed and repeatedly offers to write me a prescription for an anti-depressant. I'm not depressed!!! Emotionally I'm happy...physically I feel like I've been run over by a truck (this became my favorite catch phrase to describe how I'm feeling, when asked).
I'm in the same hole that many undiagnosed lyme patients find themselves in. I swear it's lyme despite the negative tests...and I make an appointment with an infectious disease specialist for December.

12/07/00 LabCorp Dr. Philip W. Paparone (infectious disease specialist)

12/21/2000 - I printed out an article on Lupus, looking for source of chronic fatigue, joint/muscle aches, headaches. Considered Chronic Fatigue Syndrome.
Kidney tract infection began - printed article on chronic renal failure...wth was I thinking??

12/21/00 Dr. Philip W. Paparone (infectious disease specialist)

12/27/00 Dr. John Scalera, MD (Partnered with Howard Slotoroff) (Kidney Specialist)

1/03/01 Dr. John Scalera, MD Ordered Kidney Xray

Was told "You are too young to be having kidneystones/infections" Treated with ABX for two weeks, saw him again, urine came back clean, he dismissed me.

I commenced to live with the chronic pain in the left side which did not go away, along with all my other chronic symptoms

9/30/02 Quest Diagnostics Bloodwork ordered by Stuart Sackstein (OB/GYN)

2002-2004 Steady increase in frequency of existing symptoms and the emergence of new ones. Migraines increase from 1-2/year to 6-8/year to 1/month. Mental symptoms of confusion, absentmindness developed. Fatigue, muscle/joint pain increased. Odd fevers for no reason increased.

By the end of 2003 into beginning of 2004, I was able to do less and less due to the tiredness. I'd go out clamming (I commercial clam with my best friend Dave) and have to stop to rest. He'd joke about me stretching out on the deck of the boat to rest, but he was concerned. At one point when we were talking about how I'd been feeling, he asked me if I'd considered taking something for depression! This from one of my best friends! I wasn't depressed.

Fishing, which I love to do, had became a rare thing. It made me tired just thinking about hiking down the beach and across the marsh.

Chronic ache in side plus chronic irritable bladder (which I was blaming on hormones) that had existed for years, spread north to became painful kidney infection. Ouch Ouch Ouch!!!!

6/24/04 Dr. John Feneran, Urologist

NOTE-right foot began to ache/feel swollen when kidney infection started did not mention to doctor, I assumed that it was part of the kidney infection (you know what they say about assuming)

6/25/04 Southern Ocean County Hospital ordered by Dr. John Feneran, Urologist

Likely, pain was caused by the infection sitting in the ureter, until it spread to my kidneys. That'll teach me to just live with symptoms!!!

7/12/04 Dr. John Feneran, Urologist

7/12/04 Dr. John Feneran, Urologist

8/23/04 Dr. John Feneran, Urologist

8/31/04 Southern Ocean County Hospital ordered by Dr. John Feneran, Urologist

9/9/04 Dr. John Feneran, Urologist

10/1/04 Southern Ocean County Hospital done by Dr. John Feneran, Urologist

11/04 Dr. Toby Tracy, MD - Family Medicine Center

NOTE: This is when I started seeing just Dr. Tracy, to keep things more concise

11/29/04 Southern Ocean County Hospital ordered by Family Medicine Center

11/11/04 Dr. John Feneran, Urologist

NOTE: my file at this time shows me attributing Lyme symptoms to the kidney infection/cystitis actually, was the other way around, but I didn't know it yet.

1/3/05 Dr. John Feneran, Urologist

2/14/05 Dr. John Feneran, Urologist

3/24/05 Dr. Toby Tracy, MD - Family Medicine Center

NOTE: Was having pain in upper left arm along with tightness/pain in chest! received referral to see cardiologist, mother in law (nurse) recommended Elnahal

3/28/05 Dr. John Feneran, Urologist

Kidney infection showing improvement, less pain.

Despite the improvement in the infection, other symptoms were progressing. Just folding a load laundry would exhaust me so that I had to lie down and rest!

4/1/05 Dr. Mohamed H. Elnahal, PA (Cardiovascular)

4/14/05 Atlantic City Medical Center, ordered by Dr. Mohamed H. Elnahal, PA (Cardiovascular)

4/22/05 Southern Ocean County Hospital done by Dr. John Feneran, Urologist

4/29/05 Dr. Mohamed H. Elnahal, PA (Cardiovascular)

NOTE: I described foot pain, which was now happening to both feet Tops of feet feeling swollen and stabbing/aching pain, chronic. Dr. Elnahal recommended seeing neurologist. Elnahal is a very thorough doctor and great to work with. For future heart problems, he's definitely my doctor.

I'll add a little more about the foot pain here. I'd noticed an increased tendancy to stumble over my own feet. Right ankle/foot were developing prounounced stiffness. I'd go off balance now and then when walking.

6/6/05 Dr. John Feneran, Urologist

NOTE: 6/8/05 I became ill...fatigue, fever, lymph nodes all over body began to produce stabbing/constant pain, neuropathy in hands and feet increased, skin felt prickly.
6/10-6/12/05 (fri-sun) symptoms increase, neuropathy was worse at night. very lethargic barely sleeping, had to sleep in the recliner to get even partially comfortable.

6/13/05 Dr. Toby Tracy

NOTE: He did not ask me about medications!

At this point I peg the recurring chest/arm pain as more increased Asthma symptoms. I'd never had it before, therefore not recognizing it when it happened. Discussed it with Dr. Tracy and he agreed.

6/14/05 Scott (hubby)

NOTE: We were seriously frightened during all this. I thought over that weekend before I saw the doctor, that I was going to have to go to the ER. Scott says by Monday night he was trying to figure out how he was going to survive without me. He swears I went for 12 hours straight without drinking or moving, although I was mostly conscious, watching TV or semi-dozing.

6/16/05 Coastal Physicians & Surgeons, PC - Dr. Kevin Hunter, Neurologist

NOTE: I requested lyme testing, mentioning previous testing was negative - was told it was probably not lyme.
Allergies to Codiene and Bactrim noted in file.

6/16/05 Coastal Physicians & Surgeons, PC - Dr. Kevin Hunter, Neurologist

By the time I saw Dr. H., the neurapathy had continued it's spread, right/left feet increased, right hand had started to hurt/burn, then left. He noted my unsteady gait. Said my reflexes were a bit fast (no clue what that indicates). A couple weeks after this office visit is when the numbness started...again, bilaterally, right top foot to shin, then left top foot to shin, the right/left backs of the hands up to mid arm. Then, frighteningly, the left half of my face from forehead to underside of the jaw, and the corner of my lips! Why it attacked the left and not the right I don't know, but it's possible its a pre-curser to Bell's Palsy, from what I've learned from folks who developed it. So far, no Bell's Palsy.

6/21/05 LabCorp bloodwork ordered by Dr. Kevin Hunter

At this point, my file contains printout on Multiple Sclerosis Symptoms. There is family history.
Also, this is where Hank gave me the paperwork about Dr. E. and Igenex testing, telling me he really hoped I'd follow up on it. He had lyme disease 13 years before he was diagnosed. He's in very bad health at this time.
Printed out lyme disease symptom list again. Had even more symptoms than before!! Starting to seriously think about getting retested.
Also considering going to John Hopkins University in MD if no cause is found with nerve testing or sleep study. I requested/received the application, asked all my doctors for copies of my records. Feneran and Hunter were obliging. Family Medicine Center did not comply. (Why am I not surprised? GP's are so darned uncooperative when they hear the word LYME!)

9/12/05 Dr. John Feneran, Urologist Diagnosis - Chronic Cystitis Ciprofloxacin (Cipro) continued.
Ditropan prescribed for chronic cystitis -urine frequency

9/14/05 Coastal Physicians & Surgeons, PC - Dr. Kevin Hunter, Neurologist

NOTE: Took one dose of Zonegran on 9/15/05
After taking dose, looked up side effects just to be on the safe side
ALERT!!! - Zonegran contains Sulfa....Bactrim (Sulfa) is Sulfa...I was about to have allergic reation! Rushed to pharmacy, got Benadryl, took immediately. At that point headache was already starting, so I caught it just in time.
Called Dr. Hunter 9/16/05
Zonegran discontinued, allergy note in file updated to read Bactrim (Sulfa) instead of just bactrim Cymbalta prescribed.

Here I am, recovering from allergic reactions (and nervous about taking the Cymbalta...I waited about two weeks before I finally started it. At this point, due to the numbness on my face, hands and feet that had no known cause, I will admit that I was now in a state of depression. Not despondant...but seriously freaked out and prone to crying. So the Cymbalta which had been prescribed for peripheral neuropathy (as it is for diabetics) also had the side benefit of being an antidepressant.

INTERMISSION: Let me reiterate what I've been tested for so far over the years, to give you an idea of the level of stress I was under, not know what was wrong with me. See Mo's Thoughts on Misdiagnosis and Testing

9/28/05 Dr. E., MD (Lyme) - INITIAL VISIT

She also noted that I had abdominal pain on the left side. Recommended seeing my GP to investigate. Click to view RESULTS OF THOSE TESTS

9/29/05 Dr. Toby Tracy, MD Family Medicine Center

As of February 06 I still don't know the results of that test. When I called 4 weeks later, I was told no one had looked at it yet. Never got a call back. I've been avoiding things like nuts, seems to be helping so maybe that was what it was.

10/24/05 Dr. E., MD (Lyme)

OK - So this is the big day. After years of the unknown....I have Lyme Disease!

Finally, a doctor that will treat the whole package, not just shrug it off and treat individual symptoms. She recommends detoxing with filtered water (I bought a Nikken), and foot pads. My immune system was extremely low, so the AG Immune Kit of vitamins/supps will help build it back up so that it can start fighting the lyme.

11/22/05 Dr. E., MD (Lyme)

11/29/05 Coastal Physicians & Surgeons, PC - Dr. Kevin Hunter, Neurologist

NOTE: The Cymbalta did help a bit with the depression. It didn't ease the neuropathy pain much, but the burning eased and the stiffness decreased. I was able to walk more normally the longer I was on it.

12/20/05 Dr. E., MD (Lyme)

1/16/06 Dr. John Feneran, Urologist

NOTE: Doctor has been notified of LYME diagnosis and is refreshingly cooperative! Suggests that Cipro will assist the Ketek in treatment, as well as making sure that kidney infection goes away.

2/7/06 Dr. E., MD (Lyme)

NOTE: In retrospect, I'm thinking that the 6/14/05 episode with the Bactrim/Sulfa, where I thought it was an allergic reaction, might just have been a herx reaction. More about Herxing. However, that prickly skin sensation leaves me enough doubt, combined with the level of ferocity in the symptoms, that I'd be scared to try it out again just to test a theory.

2/12/06 Dr. E., MD (Lyme)

2/27/06 Coastal Physicians & Surgeons, PC - Dr. Kevin Hunter, Neurologist

He was surprisingly cooperative. Ok, so you have lyme...here's what we should be looking into. We discussed neuro-lyme a bit..headaches, etc. I confirmed I've had headaches for years and many migraines the last couple. He's going to talk to Dr. E. about whether or not to do a spinal tap, to see if it's in my nervous system. I think that's sort of a "duh", what with the neuropathy and loss of sensation coupled with the numbness and cognitive difficulties. At least he didn't just arbitrarily order the test, but he did express concern about neurological lyme being left untreated. I'm sort of confused atm...isn't the meds/vits I'm on treating the lyme overall? Or is there something I'm missing. Update: according to durameter in the lymenet.org forums, Dr. Hunter probably meant not being treated with IV antibiotics...since I'm currently on orals.

12/14/06 Dr. E., MD (Lyme)

12/21/06 Ultrasound of liver SOCH - not enlarged, thank goodness. Pain still present and increasing.

2/26/07 Atlantic Gastroenterologits, Northfield, Dr. Garson

4/10/07 Dr. Garson

4/24/07 Dr. E., MD (Lyme)

5/11/07 Jarrod Kaufman, surgeon, consult for gall bladder removal

5/11/07 UGI at Atlantic Gastroenterolists, Dr. Barry Kaufman, Atl

6/27/07 gall bladder surgery by Dr. Jarrod Kaufman at Community Med Center, Toms River

Corresponding Dietary Changes
Ox Bile Continued, since I no longer have the gallbladder reservoir of bile.
Reducing fatty foods as much as possible. Increased fiber in diet.

10/26/07 Dr. Toby Tracy, MD - Family Medicine Center

Depression due to my continued poor health, my father's condition of diabetes/congestive heart failuer/liver failure and my son's ODD (Oppositional Defiance Disorder) his depression and school bullying.

8/27/07 Dr. E., MD (Lyme)

11/1/07 Stopping Antibiotics. As of November I stopped the antibiotics for the Lyme and the chronic cystitis. Giving my body a rest since I've now been on antibiotics for TWO YEARS STRAIGHT!

Current Info

2/2008 Fatigue and muscle aches. Started to notice the return of fatigue and muscle aches towards the end of February. Also noted that headache point on left side of head just below temple/in front of ear started to go from off and on (which it had been for years) to steady pressure pain. Understandably nervous about possible causes like a tumor or a bad artery. This was non stop by mid May.

5/14/08 Dr. E., MD (Lyme)

NOTES:
  • The pain/ache near the temple is a spasming muscle! Dr. E. just about made me jump out of the chair when she pressed it. Using peppermint oil to relax the muscle. It works.
  • I looked at my medications and decided to consult with Dr. Tracy about potential problems with liver, meds, diabetes. Decided to cease Cymbalta regardless of liver status, to see how I do without it, so started reducing dosage.

    • 5/31/08 Dr. Toby Tracy, MD - Family Medicine Center

    NOTES:
    I'm concerned that I may have scarring of the liver due to the use of prolonged antibiotics...especially the Ketek.
    "The ketolide antibiotic Ketek has been linked to hepatitis and liver damage"
    I was taken off it as soon as my liver enzymes showed the slightest elevation but the damage may already have been done.

    http://www.providence.org/healthlibrary/contentViewer.aspx?hwid=aa67653&serviceArea=generic#hwtop I have appts. with Gastroenterologist, Neurologist and Heart Doc. to follow up on all my current symptoms.

    6/11/08 Dr. Kevin Hunter, MD

    NOTES: He basically told me don't panic over liver/brain issues...if I was really in bad shape someone else would be asking the questions, not me. Found this strangely reassuring, lol. I got scolded for not using my CPAP (for mild sleep apnea) and will be using it like i'm supposed to...soonish.

    6/12/08 Took bloodwork for Dr. Hunter plus Hepatic Panel ordered by Dr. Tracy.

    6/12/08 Dr. Tracy's office called

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