*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

Previous post: The Phone Call: You Have Lyme

After I hung up the phone, I walked back to my desk in absolute shock. I couldn’t believe the doctor had just told me I have Lyme Disease.

How? How was it possible that I, the most non-outdoorsy person on the planet, had Lyme Disease? I started trying to go back and think of the times when I possibly could have come in contact with it, which was no easy feat with the state my memory was in.

In July, we had gone home to see our parents and my in-laws live in a very wooded area. Could it have been there? Just after that, we went to a family reunion at a campground in Kentucky. Could it have happened then? I just didn’t know.

I only remember one time actually having to pull a tick off of me and from my best estimation, it was the summer of 2000. The tick was attached on my lower back and I found it when I was taking a shower. Later as I continued to do research on Lyme, I would continually come back to this time and wonder if that’s when it all started. But at the time, I brushed it off because my symptoms hadn’t started until the summer of 2012, or so I thought.

As I sat at my desk, I frantically started searching the internet for doctors and treatment plans. While the doctor who diagnosed me had agreed to treat me, she wasn’t covered by insurance and she told me I had a very long road of treatment ahead of me. I simply couldn’t afford to pay out of pocket for all of the medical care. She also sent me a waiver that would have to be signed informing me that there was no set treatment for Lyme and I basically had to agree to this upfront before treatment. I later found out many Lyme doctors require this but it didn’t sit well with me at the time.

So as I was searching, all I found over and over again was instructions on how to get a referral through certain non-public channels and to NEVER reveal a doctor’s name online who treats Lyme. I would soon find out that doctors were losing their medical licenses by treating patients.

After I told my husband about the diagnosis, I called my mom. Her first reaction was the same as most of the people I know – that’s great, now you know what it is and it can be treated! But as I began to tell her more about what I was learning, she started to see that a diagnosis of Lyme was anything but great. She spoke to the doctor she works with and he recommended that I find an infectious disease doctor to see.

I searched through the covered infectious disease doctors in my insurance plan and started making phone calls. Office after office agreed to make appointments until I told them why I was coming in. Then the answer was the same – we don’t treat Lyme. One actually hung up on me when I said I had Lyme. I was only a few hours into a diagnosis and was already beginning to see how difficult this was going to be.

So I turned back to the internet and began to use all of these back door channels to locate a doctor who would treat me or that I could at least get a second opinion from. One forum led me to a Yahoo group for Lyme in my state. I posted there and within a few minutes, I had multiple emails with the name of a local doctor. One local doctor. I would later get other names but quickly found out that finding a doctor who treats Lyme who also accepts insurance is nearly impossible.

I called her office and asked if she accepted my insurance. They said she did but she wasn’t listed in my insurance’s database. I made the appointment, determined to at least get a second opinion, no matter what the cost, then called my primary care manager for a referral. Thankfully, my insurance company did approve the referral. I was set to see her on Friday, November 16th. That gave me four days to research all I could and completely freak out about all that was happening.

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

See the previous posts in this series – first symptoms, Doctor #1, Doctor #2, Doctor #3, and Doctor #3 Follow-Up.

November 12th. That is a day for me that will be one of those that is burned into my memory. One of those days where you will never forget where you were when you heard the news. One of those times when everything just stood still and you waited for someone to wake you from what surely had to be a dream, or in my case, a nightmare.

My Symptoms

It was a normal day in the office. Or as normal as it could be considering the downward spiral with my symptoms. My memory loss was much worse. I was forgetting people’s names, not recalling recent conversations, forgetting things that shouldn’t be forgotten (like how our dog died) and on more than one occasion (my family doesn’t even know this), I took wrong turns on my way home from work.

The brain fog was consistent and I generally didn’t get a break from it. It was the worst in the afternoons. At that point, I couldn’t concentrate on a sheet of paper or the computer screen long enough to read a few paragraphs. Or if I was able to read it, I couldn’t comprehend any of it. It was like reading a foreign language. My head felt pressure that was much different than that of a headache or even sinus pressure. The only way I knew to describe it was that it felt like it was filled with cotton. I imagine it’s much like the feeling before you faint, only I never fainted.

I would go through a drive thru at a restaurant and when I would get to the window, the employee would hold her hand out for me to pay. I would sit there frozen trying to figure out why she had her hand out – what did she want? She would have to ask me for the payment before I figured out what I was suppose to do. Things like this were becoming commonplace. How I managed to continue to do my job is beyond me.

The most disturbing part for me was when my mind would literally go blank. I had joked with people in the past when I couldn’t remember something that my mind was blank. I’ll never do that again because I know how that actually feels now. I would be mid-sentence with someone and all of the sudden I didn’t know what I was talking about. Or I wouldn’t be able to think of the next word. And instead of having all of these thoughts or words swimming in my head and I just had to find the right one, there would be none. It is the oddest and most horrifying feeling when there’s just nothing there. Not a “it starts with this letter” or “it sounds like this”. Nothing.

Normally before when I lost my train of thought, I would be able to go back and say “we were talking about this and then you said this and I said that….” but now when it was happening, I couldn’t do that. It used to drive my husband crazy because I was able to recall exact conversations from years prior and tell him where we were, what he was wearing and exactly what was said. Now I couldn’t do it when I was in the middle of the same conversation I was trying to recall. It was terrifying.

The Phone Call

So that morning, my cell phone rang and I saw it was the doctor’s office. When I answered the phone and heard, “This is Dr. ____”, I knew I was it was bad news. Why was the doctor calling to give me my results? The nurse should be doing that.

She told me she had my blood tests back and then said those three little words “You have Lyme”. It didn’t even register with me at first. In fact, I asked her for other test results that she had done to confirm my hypothyroid diagnosis. She stopped me mid-sentence and said “Did you hear what I said? You have Lyme Disease”. And honestly, I didn’t. I heard her say the words but it was like things suddenly started spinning out of control.

She asked me if I had a pen and paper and when I replied yes, she started rattling off my treatment plan. I was writing down every word she said but comprehending nothing. Supplements, antibiotics, long term treatment, acute or chronic, IVs, ports, herbal medications, controversy over treatment types, signing a waiver. It was just line after line on this page of all she was saying.

Then she paused and I could hear her take a deep breath. She said “I am so sorry I didn’t test you as soon as you came in. I’m so sorry I didn’t just do the test then – you could have already been in treatment for more than a month.” I honestly thought she was on the verge of tears.

And that’s when I knew I was in trouble.

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

See the previous posts in this series – first symptoms, Doctor #1, Doctor #2
and Doctor #3.

During the time I was waiting to get all of my results back from the Doctor #3 visit, I decided to start researching Lyme as she had mentioned. Keep in mind, at this point, I’m also researching other things she mentioned such as fibromyalgia, chronic fatigue syndrome (which she called a trash can diagnosis – what doctors say when they have no clue), multiple sclerosis, lupus….well you get the idea. Think of an autoimmune disorder or a scary disease and I was researching it.

Could It Be Lyme?

And I had to admit, many symptoms of Lyme did sound familiar. Too familiar. And it did say that it mimicked a lot of the other diseases she had mentioned we were going to investigate. But the hypothyroid symptoms were similar too. And much easier to deal with so I continued on under the belief that that’s what it was. Because after all, I am NOT an outdoors person.

If I’m being honest, I quit reading about Lyme disease after my initial research on it because it scared me. Really scared me. Page after page covered the controversy surrounding the disease with no tried and true treatment, insurance companies that wouldn’t pay, doctors who wouldn’t treat it and an underground network of doctors with names that couldn’t even be mentioned in an online forum for fear of losing their medical license. I saw stories from people who had died from complications, ended up in wheelchairs or bedridden and had basically had their life taken away from them. It was too much so I put that possibility out of my head.

Back to the Doctor’s Office

On November 5th, I had a follow-up with her and she said she believed I was hypothyroid. Though most of my labs were within “normal” ranges, they weren’t in optimal ranges and my reverse T3 was through the roof. She prescribed a very low dose of Armour thyroid for that. She also discovered with my saliva test that I had adrenal fatigue. This can of course make your feel horrible. So the two of those together could account for a lot of my symptoms. She prescribed Cortef for it in low doses to be taken twice a day. But she still wasn’t convinced that was it.

I asked if she still planned to test for Lyme and she said yes, let’s definitely do that. It may be nothing but I really feel like we should do that test. It was a simple blood test so no big deal.

My total for the visit and Lyme testing was a much more palatable $192. I didn’t even bother sending it into my insurance company this time.

When I returned home, I began looking up Cortef (med for adrenals) and found a lot of controversy surrounding it. First, supplementing your adrenals is tricky business as it can interfere with your natural production of the levels in your body. You could end up where you had to have supplementation for life. It scared me a bit so I decided not to start taking it yet.

In just one more week, I would reevaluate everything. Read on about the phone call that would change everything.

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

See the previous posts in this series – first symptoms, Doctor #1 and Doctor #2

Are you beginning to see a pattern here with how many doctors I’m visiting? 🙂 Fortunately, this one was the one who finally gave me my diagnosis but it would still be weeks before I got to that point.

Checking Out The New Doctor

After my last doctor’s visit with doctor #2, I started researching this new integrative medicine doctor. I wasn’t entirely sure what that even meant but was all for anyone who could figure out what was going on. She was actually board certified in internal medicine but her interests were in integrative medicine.

I called my insurance company to inquire about possible coverage of this doctor. I was told she’s not covered and I would have to pay out of pocket. However, I could use my out of network benefits, submit the claim and they would cover 50%. Any labs or tests, as long as it was through an approved lab, would be covered as normal. So I was thinking that wasn’t so bad – I mean how much could a doctor’s appointment cost?!

LOL! Famous last words….

I called the office to make an appointment. They couldn’t give me an exact cost as it depended on the amount of time spent with me. But it could be anywhere from $135 to $400. I struggled with that decision but finally decided my health was well worth $200 (50% of the possible maximum of $400) and scheduled the appointment.

At the same time, I found out about another doctor who treats “weird thyroid” patients who was covered but I couldn’t get a new patient appointment with him until January 2013. I scheduled it as my back-up (and was utterly amazed I was going to have to wait four months – this MD was internal medicine, so not even a specialist!).

My First Appointment with an Integrative Doctor

So I show up in this new age office in the second week of October completely not knowing what to expect. I was nervous, to say the least, and not completely sure I bought into this “integrative medicine” practice.

It smelled of weird herbs when I walked in and the waiting room was relatively empty of other patients. I signed in and was quickly called over for some sort of scan they do on your hand to find out how your body absorbs minerals. I immediately questioned my judgement (again) but figured I was too far in now, so I may as well just go with it. The scan showed I was low (I seriously doubt it ever shows otherwise) and then I was called back to an exam room.

I had my printed list of symptoms and history, blood tests results, radiologist report from the ultrasound and a huge packet of research I had printed off. I figured if I was paying this much, we were going over EVERYTHING.

I started having issues with UTIs back in 2000 and later with kidney stones in 2002. Because of that, I was on a LOT of Cipro and Levaquin. This was “very interesting” to this new doctor and she thought it could be part of my issue with something called fluoroquinolone toxicity. Yeah, try to say that three times fast! If I’m being honest, at this point, I was thinking am I really paying hundreds of dollars to see this quack – what am I doing? But I sat there listening. Knowing what I know now, I feel bad now for ever even thinking these thoughts.

Ultimately, she did agree that I was most likely hypothyroid and she also suspected adrenal fatigue. She was also concerned about how my body was processing and absorbing different vitamins and minerals (from food and supplements) so she wanted to run some additional tests for that. She couldn’t be certain yet about what was going on but she really thought that the hypothyroidism and possible adrenal fatigue were reactions of something else going on, not the primary condition(s).

She was writing out orders for blood tests when she looked up at me and said, “You said all of this started quite suddenly, correct?” I responded yes and she looked back down at the list of blood tests. Then she shook her head and said “No, I’m going to wait on that. If these tests all come back normal, I may test you for Lyme Disease.”

That was the first time anyone had mentioned that. And even in my research online, I hadn’t come across it. I’m not an outdoors person AT ALL so I thought she was crazy (again!). There was no way I was going to have Lyme Disease. It was going to be my thyroid and that was that.

I went back to have my labs drawn and she brought me several supplements that she just happened to sell that she said I needed to try. One big thing (which I do believe…now) is that she said I needed a new multivitamin. I was taking Centrum at the time and she said it’s notorious for not being absorbed. I did buy two of the supplements and declined the rest.

When I went to check out, I nearly died. My bill was $993. This included the visit, the blood tests she ordered (not covered), the saliva test I was to do at home and the two supplements. I reluctantly pulled out my credit card – there wasn’t much else to do at that point – it’s not like I could ask for my blood back! And braced myself for having to recount the story to my husband.

He was not pleased initially but came around to the same conclusion I did ultimately which was if it allowed me to get better, it was worth it. I was further surprised when I turned in the claim to my insurance company and they covered 50% all right – 50% of their allowable charges. Of the $993, I received a check for $72. Gee, thanks.

But that was nothing compared to what I was facing, unbeknownst to me at the time. I had no idea how cheap I would end up thinking $993 was later down the road. And I ended up becoming incredibly thankful for the insurance company who I thought was screwing me over with this bill.

Find out about my results from appointment #3 here.

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

See the previous posts in this series – first symptoms and Doctor #1.

My Symptoms

As I continued to drag on with no diagnosis, I added more and more symptoms to the list. This is my list from the end of September:

• Fatigue/exhaustion like I’ve never had in my life
• Hair falling out to the point the girl who does my hair commented on it
• Brain fog
• Lack of concentration
• Memory lapses
• Inability to find the right word when speaking
• Mixing up words
• Always feeling cold with low body temp (lowest recorded was 95.8)
• Changes in menstrual cycle (had always been like clockwork)
• Daily headaches that typically started in the afternoon
• Unexplained coughing
• Hoarseness
• Neck pain, back pain, pain between shoulder blades

But you know according to my previous doctor’s office, I was just depressed! And maybe I was getting there by this point because I couldn’t figure out what was wrong with me! But the anti-depressant did nothing so I knew it really wasn’t that.

I anxiously waited for the short waiting period to pass from switching my primary care manager so I could be seen by the new doctor’s office.

Appointment with Doctor #2

The last week of September, I saw the NP at the new office and she agreed that something just wasn’t right. I took her my list of symptoms (listed above) along with a much more thorough medical history. I had spent days compiling this in written form from past medical records because my memory was getting so bad, I couldn’t be sure I would remember answers to questions in her office.

I also gave her the list of labs I wanted to have drawn. She agreed and then added a few more on top of those. She also ordered an ultrasound of my thyroid, which I had completed the following day. I was feeling very positive after my appointment with her, especially when she told me if all of this comes back normal, it doesn’t mean I’m okay. It just means we haven’t found the cause yet.

Pure relief.

Follow-up with Doctor #2

When I went in for my follow-up with her, she said that all of my labs showed normal except for my vitamin D. And she said that lack of vitamin D can cause some of the symptoms I was complaining of. Whew! How easy, right? And it was no big surprise I was low in vitamin D since my skin hasn’t seen the sun without 50 SPF since 1997 and I was no longer drinking milk because of the low carb diet.

My thyroid ultrasound also showed a multinodular thyroid that was slightly enlarged. Hmmm…this was new to me. She said none of the nodules were large enough to be biopsied so it was a “watch and see” kind of deal. The odd part was that my thyroid labs showed normal. So she wanted to refer me to an integrative medicine doctor who, in her words, dealt with “weird thyroids”.

I agreed and went on my happy way thinking this must be the ticket! It’s vitamin D and my thyroid! My next hurdle was that this integrative doctor was not covered by my insurance. She didn’t take insurance at all. And that would bring along with it a whole new set of complications.

Read more about going to see Doctor #3

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

See the first in this series of posts here.

When the carb re-set didn’t work, I made an appointment with a new doctor. We changed our primary doctor just after the car accident when we were told he didn’t see car accident patients. I had not yet seen this new doctor since this was my first time needing a doctor that wasn’t directly related to the car accident.

My first appointment was on August 23rd. I was actually pretty excited as I figured he would draw some blood, we would figure out what was going on, I’d pop a pill and a few days later, feel like a new person.

If I had only known…

I filled out all of the new patient paperwork only to find out I would be seeing the PA instead of the MD. I had good luck with NPs/PAs in the past so I just said whatever and went over in my mind what I wanted to say to him.

At this point, my main symptoms were fatigue, hair loss, low body temp, feeling cold and I was just starting with what at the time I didn’t know how to describe. I now know it as brain fog.

I told him about all of these things and gave a brief medical history (kidney stones, c-section with my son, tachycardia episodes in past, etc). After listening to me for a few minutes, he diagnosed me as having depression and anxiety. When I realized I was being written off, I started to tear up (which didn’t help me much in convincing him I was not depressed). He told me if I would try this anti-depressant for a few weeks, he would run blood tests then if it didn’t work. But he was sure it would work – I was just stressed.

Now, I knew then that it was not stress related. My husband deployed four times to a war zone with special operations. During his first ever deployment, I simultaneously quit my job, moved to a new city and started a business. When I was in an accelerated MBA program, four months pregnant with my son, my doctors told me they thought I had a rare and incredibly aggressive form of breast cancer that untreated would likely kill me around my due date (turned out to be a false alarm). My point – I know what stress is and this wasn’t it.

I took my prescription and left. On September 13, I showed up in his office again and this time made a follow-up appointment specifically with the MD for a week later to review the blood tests that he was going to draw on that day, as promised.

He was clearly not happy to see me back letting him know that his miracle cure did not in fact work, just as I had predicted. I insisted something was wrong and things were getting worse. Can we PLEASE run blood tests now?

After a lecture that I was overreacting and just needed to exercise, he finally relented and drew blood. I had a whole list of labs I was requesting based on my research. I assumed he would draw what I asked….wrong.

A few days later I called to confirm the appointment time with the MD. I was told the PA canceled that appointment “on my behalf” after my visit demanding blood tests. So here I was with no follow-up and another two week wait to get back in with the MD. I was furious. How he dare he cancel my appointment! I called my insurance company and dropped this practice as my primary care manager.

I went to the patient portal to pull my blood tests results. I thought there must have been a mistake. The only tests run were for iron, B12 and TSH. He didn’t even run a CBC! What a complete waste of both time and money with this jerk.

So it was off to yet another doctor….see how that visit progressed here.

*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

Beginning in the summer of 2012, after a car accident where we were rear ended, I started with symptoms that couldn’t be explained.

Excruciating fatigue was the first symptom I experienced and it seemed to come on very suddenly. I began nearly falling asleep at my desk at work. I was having a hard time keeping my eyes open, particularly in the afternoon.

I started coming home from work and going directly to bed. I was in bed before my toddler nearly every night. When I woke up in the mornings, I still didn’t feel well rested.

My other main symptoms at the time were hair loss and low body temperature. Mainly, I just flat didn’t feel good at all. I felt as if I had a flu that just wouldn’t let up.

I had been on a low carb diet for several months and was down 30 pounds. On August 3, I made a post on a low carb forum and told everyone about this unrelenting fatigue. I explained how I just couldn’t get over it and did they think the low carb diet could be to blame? Many answered no as low carb tends to give you more energy (and that had been my experience as well up until this happened). They rattled off several other causes – thyroid, low vitamin D, B12 deficiency, anemia, etc.

I spoke to the doctor who recommended low carb to begin with and he suggested I add carbs back at a normal level for a week and see what happened. Maybe a carb re-set was what I really needed. So I did that beginning on August 15th.

A week later with no changes, it was time to go to a doctor and figure this out. My mistake was in my choice for a doctor.

Read more about that here: My next doctor visit