My story: My long road to diagnosis

Caution: this story is boring and contains no usable material. I am writing it because it is cheaper than a Psychologist and in case someone who is new to Lyme can learn something from my long, winding road to diagnosis.

First day of my misery begins:
One day 15 months ago, I get to work and when I look at my co-worker, his head is on his shoulder. This was odd. I close one eye and he is OK. I close the other and his head has moved. I panic. I rush to the eye doctor who finds that I have a blood clot in the right eye, but worse, my blood pressure is 190/110. He wants to call 911 and rush me to the hospital. This not being my hospital, I refuse because of the insurance issue and promise to go to my hospital. I go to the ER and my blood pressure (BP) has dropped to 159/101. They give me a valium and say that it is anxiety. I get sent home and told to go see my Primary Care Physician (PCP).

Next day I go and he puts me on beta blockers for the high blood pressure. On this day my blood pressure is 128/85. If you don’t know this- beta blockers should NEVER be used as first treatment for high BP, especially if my blood pressure is just marginally high. In the next few days I get tons of anxiety, panic attacks, my hair starts to fall off, severe headaches, stiff neck, chest pain, palpitations. I get sent to a cardiologist and he changes the medicine to one that is 5 times more expensive. During this time I end up in the ER twice more and both times I am told it is anxiety so they prescribe Xanax. By now I am checking my blood pressure 10 times a day because it goes up and down so much (from panic?) and my symptoms are getting worse so there is more panic and anxiety.

At the one month of my first symptoms I go see my PCP and beg for help. He says I have fibromyalgia and prescribes SSRI's . I also mention that when I bend down, my chest hurts and I get dizzy. He prescribes a PPI (Omeoprazole) and sends me to a gastroenterologist. The GI does an endoscopy and a biopsy and finds a bacteria that they think is H.Pylori so I am given Amoxicillin and Clarythromycin for a week. So during this week I begin to feel great. My symptoms are gone and I feel great. A few days after finishing my week of antibiotics the symptoms start to come back. Palpitations are worse. I go to the cardiologist and they give me an event monitor to wear on my chest for a month. So now each time that I get palpitations I press the little button on it. At the end of the month they find that I pressed it 750 times. They say I have an irregular heart beat and that it is normal in some people. I get sent home.

Then the dizziness and lightheadedness starts. I go to the ER and they do an MRI with contrast. They find brain lesions in my brain which my neurologist later says that they are brain freckles and that they are normal in some people. I get sent home saying she can’t do anything for me.

By now I am convinced that the beta blockers are killing me because of my symptoms. I try weaning off of them three times. Getting off of beta blockers is one of the worse things you can do in your lifetime. I finally manage to survive being off of it and my blood pressure is better than ever. I guess I never needed it.

I go see a Physiatrist for the neck pains and they inject me with a cortisteroid in my neck. I almost collapsed on my way home and my headache is at its worst. But next day most of my symptoms are gone. For a week I am feeling normal. Then the symptoms come back ten times worse. I go back to my PCP and ask for Cortisol. They won’t give it to me but get sent to a spine and neck specialist. He does x-rays and finds some calcium between my neck bones but not to where it is causing my neck pains. Nothing is done.

I begin to miss work, am always depressed, and I know that I have months to live if that. I change Primary care doctors and find one who is willing to listen. He does bloodwork (seven blood vials worth) and one of them is for Lyme disease. When it comes back it shows three bands so it is not Lyme according to the CDC. Western blot is done and shows to be equivocal.

I am sent to an Endocrinologist for my chronic fatigue. The endo doc runs test and says that I am OK. I start to cry in her office because she was my last hope. I am devastated that no one can help me and I am sure that I am going to die soon. On my way home she calls me and says that she wants to run more tests. One is for anti TPO. I turn around and get my blood tested. I have some hope now. It comes back positive! So know I know I have hashimoto’s. But then the doctor tells me that she can’t do anything for it. That we have to monitor it and when my thyroid dies, I will be put on thyroid medicine. I get sent home.

I can’t get those three bands of Lyme disease out of my head. I start to read about Lyme on the internet and match 48 of the 52 of Dr. Burrascano’s Lyme symptoms. I go see my PCP and show him the list. He sends me to an infectious disease doctor. At last I am going to get cured. Infectious disease doctors are experts on this. The appointment is three months later. Longest three months that I remember. Each time I felt a symptom I told myself that the cure was coming. I had to be strong. So I get to the ID doc and he looks at my history and says that I don’t have Lyme. That the CDC requires 5 bands for it to be positive. My heart sank. I beg for more tests and she says that what I have is not something that she can treat. At my begging she runs test for Erlichia and Epson-barr viruses. Both come back negative.

So now, with no hope, I go see an attorney and do my will. I begin to bring my personal stuff from the office and begin to have garage sales to sell some of my stuff. Then I discover the health forums. I begin to read and find that there is something called an LLMD. I send an email to someone on the board and I get a reply of contact information for a LLMD. There is hope once again in my heart. I call the LLMD but he is no longer taking patients because they have seized his patient medical records. In desperation, I ask if they know of any other LLMD anywhere that can help me. I am given the name of one. I make the appointment and the doctor emails me the Burrascano list for me to fill out. I start jumping with joy! This doctor knows about Burrascano and knows the list!!!! I run downstairs to my wife and I am crying. She panics but sees that I am smiling between tears. I tell her about this doctor and she looks for a place to sit because she is now crying too. We are so excited, even if this doctor charges 500 dollars a visit. She tells me that we will somehow come up with the money. We have another garage sale and I sell some of my tools on Craig's list to come up with the money. I go see the doctor and finally, get prescribed the antibiotics. Finally, after 13 months of seeking answers I am put on antibiotics. It has been three months now since being on antibiotics and my symptoms have gotten better. I know more now than I ever wanted to know about Lyme and its co-infections. I have started to use herbs as well and most importantly, there is hope that I won’t die soon. I hope.

Mystery1, I am glad that you finally found the cause of your illness and are treating it. It is sad when we feel sick and there isn't a doctor who can figure out what is wrong with us.

Definitely not boring and very useful!

I'm so happy for you that you are starting to feel better.

I think it's shameful that the highly educated, highly paid, and highly arrogant individuals we entrust our lives to, treat us in such a manner.

I am also a nurse, and before my story began, had lost most of my faith in doctors, just seeing how they treat their patients at the hospital I work in. Now, after the past six months of what I've been through, what little faith I had is gone.

I struggle with bitterness and resentment towards the doctors and health practitioners I've seen in the past six months who said I didn't have lyme and who told me i was anxious. I can still hear the rheumatologist saying to me, "You think too much, let me do the thinking". Well, if I would have taken his advice back in July, I'd probably still be on steroids killing my immune system more than I already have.

I can still remember the nurse practitioner at my PCP's office raising her eyebrow to the new nurse practitioner who was training, when I told them my legs were going numb from sitting on the floor for a few minutes....funny, that never happened in my 42 years of life, but now, I need an anti-anxiety pill?

The same nurse practitioner laughed & said "welcome to your 40's" when I showed her the dark painful veins that all of a sudden popped out over a few week period of time & the scattered spider veins that are on my lowered legs.

How about my PCP, after explaining to her that my first LLMD, diagnosed me with lyme, saying, "now, don't believe everything you read on the internet about this"....yeah, because she taught me so much and did a wonderful job of explaining to me what was happening to my body...NOT

I am hoping and praying for my new LLMD I see in 7 days, on November 4th, to have a great plan to be me back on the right road.

After going to my LLMD, Iwent back to my PCP for somthing routine....When I told him about my LLMD, he told me to stay away from quacks like him!!! Well, that quack saved my life!!!

Lyme runner....I had an ER doctor where I work tell me the same thing..he did a rotation with a Lyme doctor In med school and proceeded to tell me that all Lyme doctors are all quacks. Funny, That he only met ONE but they ALL are quacks. Talk about stereo-typing. Needless to say, the ER at the hospital where I work would not be my first choice for my care.