lyme disease

My first missed diagnosis was Conn’s Syndrome (primary hyperaldosteronism). It took 15 years of medication resistant hypertension, eventual loss of potassium, muscle cramps and fatigue before I was finally properly diagnosed.

My second missed diagnosis was Late Stage Lyme. This one took 20 years to finally be discovered.

Did having one make the other worse, enable the other to make symptoms more severe?  That will never be answered, but perhaps, with my story others may see themselves and understand the current medical system does not have the answers.

The Beginning: Reactions to Medications and Environmental Allergies

In 1988, on Labor Day weekend, I developed a terrible sore throat.  My son had strep so I went to Urgent care. The quick strep was negative and backup culture was done. I was given Keflex.  I tolerated it okay but was told to stop after culture came back negative several days later.

Started developing nasal obstruction and increased fatigue. Noted reactions to chemicals which never had happened before. The PCP thought sinus infection, prescribed a Sulfa drug which worsened symptoms, then Ceclor. I had already developed a Penicillin allergy years before. I ended up in the hospital with laryngeal edema but not before several trips to the PCP and an ENT (ear nose throat) office with loss of voice, shortness of breath, BP off the charts, high pulse rate. I was told this was anxiety, and yet in ER after an IV dose of Solu Medrol symptoms ceased.  I was patted on the hand by an ER physician who knew me. You see, I was an RN working in that facility since 1973 but still treated like I was making things up.

Once in the hospital I was put on prednisone and seen by an allergist who said I had angioedema. The PCP was clueless on that but followed instructions of allergist.  I was in the hospital for three days then on Prednisone for 6 weeks.

Once I started tapering prednisone the symptoms returned. I developed bronchospasm, which I never had before. I was given an albuterol inhaler. The fatigue was horrible and reactions to chemicals continued. I lost my sense of smell and was swollen all the time.

My PCP told me I would have to learn to live with it. I had 2 small children, was working part time and was only 36 years old. I was not going to accept that fate.

I did some research and found an Environmental Allergist through reading “The Yeast Connection”. This made sense because I had been on massive antibiotics and steroids.

In 1990, I was finally diagnosed with chronic fatigue syndrome. (I would later find it was really Lyme disease). Through the use of a macrobiotic diet for 6 months, Nizoral, a targeted supplementation and provocation/neutralization allergy injections, I did get most of my life back. It took all of 1989 to slowly regain function and control allergies and reactions. For years following I did stay on a clean diet, continued to ration my activities, if I worked and did nothing else, but I thought that was normal. I continued with treatment by the Environmental Allergist for most care including her allergy injections, using PCP only for routine physicals and eventually hypertension monitoring.  However, the allergist also continued to ignore my inability to control my BP even with good diet, weight, exercise and lifestyle changes.

Some Back History: Longstanding Hormonal Issues

I always had been what I call “hormonally challenged”. From the time I started menses they were very irregular.  I was put on the birth control pills when I first married in 1975. Those were the high estrogen pills. I developed a deep vein thrombosis (DVT) in my right leg, most likely due to the pill.

Once off the pill, I had no menses for a year. I was seen by an endocrinologist. She told me I had high DHEA-S and testosterone and diagnosed me with Polycystic Ovarian Syndrome. (I now know the high DHEA-S was most likely adrenal related, and miraculously, testosterone is now normal, no PCOS.)

I wanted to start a family, had been off the pill for a while, once menses resumed they were still irregular. I saw a fertility specialist who prescribed Clomid. The first month did not work.  Doubled dose and the following month and I was pregnant. He also agreed with the PCOS diagnosis.

My pregnancy was rough.  I was very swollen all the time. I was fortunate that I did not have to work, so I did not.  I had a healthy delivery in September 1980 and for the first time, felt great after. I had regular menses, although a 40 day cycle, no body edema, no effort to hold a good weight.

My husband wanted a second child and this time I became pregnant easily. It was not a difficult  pregnancy. In October 1982, I had a normal delivery but then everything started falling apart. I had a tubal ligation after 2^nd delivery and went back to work per diem once the baby was 1 year old.

I developed allergies that I had never had before. I would hold 8 lbs of fluid overnight, would sometimes have to urinate several times during the night. I would suffer horribly with my menses. I had pelvic pain that was often unbearable during my periods, lots of clots, very heavy flow. I was told to live with it. I took high doses of Naprosyn (PCP recommended)  to try to relieve pain. Big mistake! I had a GYN referral and was told it was endometriosis. I had exploratory laparoscopy , the surgeon said I had a “very small area” of endometriosis that they cleaned out.  It did not help.

Then came 1988 and the big crash as discussed above.

After recovering somewhat from the angioedema, allergies, chemical sensitivities and continuing to live with a fairly clean lifestyle, working only part time, never more than 2 days in a row on a Pediatric Unit, I had a manageable life for a while. However, over time I developed neck and shoulder pain, muscle weakness, episodes of extreme fatigue, headaches that put me in bed for a day in the dark, unable to move. My back would “go out” with no warning, with no provocation. It would feel like I had been cut in half and I could not walk. Sometimes muscle spasms would occur.

Essential Hypertension or Something Else?

I saw multiple physicians and other medical providers over many years. I was diagnosed with essential hypertension at age 40 with no testing done because had family history of hypertension. I had an HMO at the time so I needed primary care practitioner (PCP) referral to see specialists. My PCP determined he wanted to treat the hypertension by himself. This was in the early 1990s. Multiple drugs were tried over many years and I had side effects with every one except a half dose of Maxzide. Even with the Maxzide my BP often was 220/110. Had frequent angioedema episodes, seemed to be related to menses. Had to give up the hospital job, went to work in a family practice office for a NP who became my Primary Provider. Most of my reactions involved generalized body edema; some were swelling of face, hands and feet (angioedema), others included hives and an increase in my blood pressure (BP) and pulse. It would take me a month to clear from these drug reactions.

My previous PCP refused to send to a nephrologist, never did any lab studies for the resistant hypertension and never even had an EKG. I had developed a murmur I never had before. No appropriate testing was ever done by him.  During that same time period I developed a swollen, painful left knee overnight in July 2004, no injury.  He did a standing x-ray and told me everything was normal. By December, when the knee still periodically swelled, I had to beg him for an orthopedic consult. His statement was “why, you won’t do anything they tell you to do anyway.” He had been my PCP for 18 years, thought he worked in my best interests, obviously not.

The Revolving Door of Incompetent Doctors

The new PCP needed to address multiple issues, but chose first to address angioedema with allergists. Over time, I saw three different allergists. None were able to really help other than telling me I had definite birch and ragweed allergies. I did an elimination diet and found Sunflower and yellow dye allergies. Nothing more.

When I finally saw an orthopedic doctor, he aspirated my knee, did an MRI and ordered a Lyme ELISA. The Lyme test was negative so it was never thought of again.

MRI showed chronic synovitis, a macerated meniscus, a softened patella, a moderate amount of fluid. Nothing was suggested except to try glucosamine and come back if felt the need. He told me it was osteoarthritis.

I was sent to a prominent local Rheumatologist who, without any physical exam and little history taken, pronounced I had Fibromyalgia and Hypermobility. He also happens to get grant money to study fibromyalgia.  He wanted me to try Provigil, I refused.

If I only knew then what I know now!

Things just kept going downhill from there.  Finally, with begging, I was referred to a nephrologist. Prior to that my PCP again wanted me to try different BP meds, one of them being an ACE inhibitor. I had angioedema from an ARB (angiotensin receptor blocker) and so was not willing to take the ACE which is known for causing angioedema. I was also doing a DASH (Dietary Approach to Stop Hypertension) diet, had lost weight (110 lbs), exercised when I could but was still labeled “non-compliant”. As my serum potassium levels kept dropping, something that had happened with previous PCP but reported to me as “normal”, I was accused of eating “strange” diets, one word short of accusing me of being bulimic.

After Fifteen Years a Diagnosis: Conn’s Syndrome

The Nephrologist came to the rescue. In one appointment he actually listened to me, ordered a few simple blood tests which showed I had excess aldosterone. Then he ordered a CT scan which showed an adrenal adenoma on the left side. Next, I was fortunate that our healthcare facility had an excellent interventional radiologist who did Adrenal Vein Sampling (AVS) which showed the excess aldosterone was definitely coming from the left adrenal which had the adenoma. Finally a diagnosis, Conn’s Syndrome, not noncompliance. Drugs routinely used to treat hypertension would not work. Only Spironolactone is indicated (Inspra is another drug for hyperaldosteronism but many insurance companies do not cover it). I had been put on Spironolactone before, it made me very dizzy, nauseated and my BP went up with it, no one can explain why.

I was sent to Endocrinologists in Syracuse who are associated with the Joslin Center. They had to call the Mayo Clinic where they have a Dr. Young who researches Conn’s Syndrome. He went over my testing and said I was a candidate for surgery. I had a laparoscopic left adrenalectomy October 2006. The surgeon was great, the post op care was not. I learned to research everything myself. After the surgery, I would no longer need supplemental potassium, and yet, it was prescribed. My remaining adrenal would be weak in function because the other had overpowered it so I should consume lots of salt for a while, no one mentioned that. I had an arterial line in surgery to monitor my BP yet post op it was rarely taken. I basically took care of myself.

I did okay for a few months. I was not as fatigued and did not have the constant muscle cramping and weakness I had before surgery.  My blood pressure had normalized, as had the potassium.

It did not last for long.

Another Decline Triggered by a Mandatory Vaccine

All the symptoms I had in 1988 started to return, slowly at first. I had a mandatory Tdap injection as I was working in a pediatric office. I caught a virus going around the office and never recovered.  Symptoms intensified. Chemical sensitivities returned, lost sense of smell and taste, rapidly began to lose weight.  Seemed to be reacting to everything. I had another 5 day course of prednisone which sent me into neurological symptoms that I had never had before.  I could not complete a sentence. I could not tolerate music or TV. It seemed like I was outside my body. I was exhausted but could not sleep. At most I would be in that twilight sleep, never a deep restorative slumber. I would get buzzing sensations throughout my body. I developed food aversion. I could no longer function with activities of daily living and had to quit working completely after cutting back hours to practically nothing.  I felt like I was outside my body looking at a stranger from up above.

Immune Function Diminished by Undiagnosed Lyme

We left the HMO after the Conn’s Syndrome experience where they had denied my ability to go to centers more familiar with adrenal issues. They claimed any endocrinologist could handle it, they can’t. We joined a PPO where I could go to any doctor without referral and could even see providers out of plan

Over the next nine months, I saw two more allergists, another nephrologist (the one who diagnosed me had suddenly left town overnight on a weekend; we think the local medical cabal drove him out), a female OB/GYN who advertised she balanced hormones (didn’t even try, told me to go to an alternative provider), and an ENT who told me I needed my sinuses reamed out (I ran).

I changed PCPs again. The one I went to post surgery told me I had become too complicated for her and dismissed me from her practice. The next PCP was new to practice, listened to me and originally stated “perhaps your remaining adrenal is weak and overwhelmed by an infection” which turned out to be right on but at the next appointment the powers that be must have gotten to her because it became “blame the patient” and “you need antidepressants”. My symptoms and suffering were ignored.

By this time, I could no longer drive. My husband had to take off from work to take me to appointments. It was getting old and I was not getting better. Since I could barely breathe through my nose we found an alternative ENT in New York City. He did lab testing, looked at the CT of my sinuses the other ENT said proved I needed surgery,  said it was not sinusitis and that surgery would not help. I had inflammation but not an infection. He tried to treat for yeast and tried to support my adrenal, as he did saliva testing that showed I was borderline low function. If you look up adrenal insufficiency many of my symptoms were textbook. But the endocrinologists in Syracuse said in no way was it possible any of my health issues were related to the removal of one adrenal, then they dismissed me.

I was so ill that the thought of a drive from Central New York to New York City was overwhelming. I had always been a computer whiz but now could barely use it.  My husband sat with me and we searched for another alternative doctor similar to the environmental allergist who had treated me before. She had since been driven out of NY State and did phone consult only, expected your PCP to work with her which would never happen in my area.

A doctor’s name popped up at the top of the list that I think God put there. We were able to get an appointment that next week due to a cancellation. This doctor holds his Family Practice certification, is a functional medicine, integrative medicine MD. He does not deal with insurance companies and all of their rules. Because I could go out of network, I did get partial reimbursement but treatment was expensive. When you are so sick you are willing to pay anything and do anything to improve.

He carefully reviewed my medical history, the recent testing I had done and ordered more specific testing. It turns out I had Lyme, most likely since 1988, and the adrenal issue had thrown the entire endocrine system off. I also had secondary hypothyroidism. A small dose of Armour thyroid was given and the angioedema episodes disappeared. If you research, you will see that low thyroid function and angioedema often go hand in hand. Why don’t conventional doctors know this?  Also, the late stage Lyme disrupts the HPA axis function. In reality, I was a hormonal mess. Plus, by this time I was in perimenopause, lucky me I didn’t become menopausal till age 59. The lack of that hormonal fluctuation has helped quite a bit.

Treatment and Partial Recovery

With the use of topical progesterone, an herbal adrenal support preparation in addition to Armour thyroid and Lyme treatment, all of my symptoms began to disappear. It was not overnight, but there was slow and steady improvement.  Also found and treated Vitamin D and iron deficiencies.  I later found some genetic issues that show I do not detoxify well, which explains why I always had to take small doses of any medication, including supplements. It took three years of Lyme specific treatment to note sustained improvement.

Unfortunately, since so many issues were ignored for so many years I have permanent damage. My left knee is wrecked, I am not willing to do a replacement as we don’t know if Lyme bacteria are still present. A surgery could set things off again. I have multiple herniated discs. Lyme bacteria destroy connective tissue. I still fatigue more easily than a “normal” person.  After stabilizing, I started with a personal trainer which helped build stamina and muscle. Lyme causes terrible muscle wasting. I still use supplements to support my genetic variants and herbal preparations on a rotation basis to manage any remaining infection. Because of my history of drug allergies use of antibiotics was not possible.

I have dealt with high fasting blood sugars since the adrenalectomy. The Integrative MD has helped me with this issue too without the use of meds.

Lessons Learned

So much life wasted, so much suffering, so much ignorance in the medical community.  To this day the doctors in the area of central New York, where I formerly lived, call the doctor who successfully treated me a quack. Instead of learning from all I went through my providers decided to dismiss me, to call me difficult. My last PCP watched my progress, did learn from my experience then left practice because she no longer felt the system was allowing her to help her patients.

I have since moved out of New York state, something we wanted to do years ago but my health would not allow. I have no PCP at the moment. It is almost impossible to find someone who does not insist on following guidelines to the letter. I do not fit in a box. I kept myself alive by refusing to follow standard practices. If people learn anything from this, it is “you MUST advocate for yourself”.  You know your body. We are all different, and therefore, assembly line medicine does not work.

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