Saturday, April 9, 2011

Dear Doctors I have seen in the past 3 years

Dear Doctor-
You are receiving this letter because you treated me sometime between 2008 and 2011.  This letter is not to place blame or find fault with anyone, but simply to show the extensive number of doctors a lyme patient must go to before they get a diagnosis.  This letter will also hopefully inspire each of you to learn more about the disease, and to thus be better educated and far more open minded when a patient presents with the symptoms that I did.

The following are the doctors I have seen in the past three years;
1. General Practitioner, Los Angeles - Treated me for the "flu" 3 different times, gave me anti-nausea medicine and Advil
2. ER in Hospital in Los Angeles - Given morphine for the pain, told to see a rheumatologist - X-ray, Cat Scan - all normal
3. Rheumatologist, L.A. - Diagnosed me with a "lupus like" autoimmune disease, fibromyalgia - Did a lyme Western Blot (because I asked) with a negative result.  Put me on meds for lupus and fibro, which made me feel worse.  
4. Neurologist, L.A. - I presented with Bell's Palsy (facial paralysis) of the left side of the face - My roommate (who was with me) and I asked if it could be lyme disease.  He said, "no." Put me on steroids and anti-virals. I later learned that steroids can effect the outcome of a lyme test and aren't recommended when one has lyme.

I was so debilitated by the illness at this point that I had to move home with my parents in Philadelphia, PA, putting on hold the acting career I was pursuing.

5. Rheumatologist - Told me I had UCTD (undifferentiated connective tissue disease).  Told me he did believe me when I said I was sick, but that he didn't know what it was.
6. Infectious Disease Doc -  Tested me with the lyme Western Blot which was negative.  I told him my symptoms were cycling monthly and he said, "in all of my years of practice I have never heard of that." Although I have read in numerous places that the lyme bacteria can flare in 4 week cycles, from Dr. Burrascano's 2008 Lyme Disease Guidelines - "It has been observed that symptoms will flare in cycles every four weeks.  It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species)."
7. Rheumatologist - Diagnosed me with fibromyalgia, depression.  Prescribed Zoloft, a therapist and a sleep study.  When I told him my symptoms seemed to get worse during menses, he ended the consultation and made me feel like it was "all in my head."
8.  Therapist - sent to by above doctor - I told her something is very wrong, that I am really sick and trying to cope.  I also told her that I am having suicidal thoughts and can't sleep.  She says to me on my second appointment - "You look fine.  So...why are you here?"
9. Dr. K - Endocrinologist - tested me for hormonal imbalances, including cortisol.  Everything seemed to be normal.
10. General Practitioner - Lyme Endemic area in MD - when I asked him about co-infections he didn't know what they were (!) so I chose not to be tested by him and not to go back to him
11. LLMD - Tested me at Quest for borrelia burgdorferi, the lyme bacteria.  All tests negative. Treated me based on a clinical diagnosis with 2 months doxycycline.  Two weeks into treatment symptoms were resolving, I started sleeping through the night for the first time in a year.  Took me off after 2 months to see what might happen, after a month off of the doxy, symptoms began to creep back in and I couldn't sleep.  Put me on 2 more months and I began to get better again.  Took me off AGAIN because my white blood cell count was low and suggested that I see a rheumatologist.  I felt like I was going in circles.  I didn't go back because he didn't address co-infections and offered no complimentary treatment in terms of combating yeast.  Also no supplements or vitamins to help my immune system.
12. Hematologist - Doc #11 sends me here to get my white blood cell count checked.
13. LLMD - Did Western Blot and PCR testing of lyme and co-infections at MDL - tested me weekly for approximately 2 months - all tests negative - got a positive test result for Q Fever - (which he told me could be a false positive) and was given no meds or protocol to go forward but was still very sick.  My instinct told me yet again that I needed to get another opinion.
14. Gynecologist - Was afraid I had another cyst, this doctor assured me I didn't and did a standard gyno exam.   I asked if he could check my hormone levels (I still thought my monthly flares could be hormone/menstrual related) and he said they didn't do that.
15. Allergist - Examined me and checked that I had no polyps as I was still getting severe headaches, and thought they might be allergy related.
16. Allergist - Dr. #15's colleague, did a skin scratch allergy test on me.  No "allergies."
17. Gynecologist/Holistic - Diagnosed me with leaky gut, adrenal gland fatigue - put me on many supplements but after about 2 months, I was still very sick.
18. Integrative Medicine Specialist/LLMD - Tested through Igenex, got a positive babesiosis (co-infection from a tick bite) test.  I also had a cortisol test which showed that I have a very low level of cortisol in my body.  Toxins that showed up were high on lead and mercury.  Also shown to have food intolerances.  Treating me for babesiosis first, severe adrenal fatigue, also doing complimentary /supplemental treatment such as iv vitamin drips, b12 shots, diet and hormone therapy.  Beyond this he will determine if I have the co-infection bartonella and if, indeed, I am positive for borrelia (the lyme bacteria).

It is 4 months into my babesiosis treatment.  I haven't had a headache for the last month, which is the first 30 day period I've had headache free in about 3 years.

It is my hope that doctors will start to take lyme disease and co-infections seriously, and to make them standard tests that are run along with all of the other tests that they do when first seeing a patient.   Imagine if, when I went to doctor number one on this list, my general practitioner in Los Angeles, he was educated about the disease and had thought to test me.  That was THREE years ago.  If I had been treated then it would have been the difference between the cost for a few bottles of doxycycline and antibiotics for babesiosis, compared to the upwards of $60,000 I have now spent getting myself well.  As the years went by, I fell further and further down the rabbit hole of illness, so that now it is an enormous undertaking just getting myself back to functioning.  I have also not been able to work, and so the career that I was building has completely lost momentum. 

Yes, I am aware that most think lyme disease is an "East Coast" disease, and so being in Los Angeles made it even more difficult for me to be tested.  That is a fallacy though as lyme disease and co-infections are absolutely present in California, across the United States and around the world.  Many doctors on the East Coast and elsewhere don't have lyme disease on the mind, and so patients continue to fall through the cracks, only to follow the list of doctors that I had to go through.  What a waste of time, money, and life. 

It is one thing to be so sick you can't get out of bed and to slowly feel yourself slipping away.  It is another thing entirely to then have to fight the very people you are depending on to diagnose you. Please educate yourselves about lyme and co-infections so others coming to you now won't have to suffer the way I and so many others have.

Addendum #1 - I wrote the above in 2011.  It is now 2013.  It seems the babesia protocol kicked that bacteria into remission and I haven't had a recurrence of those particular set of symptoms (night sweats, nightmares, band around my head headaches).  I did test positive for lyme through Advanced Laboratory Services (ALS).  I was tested while I was symptomatic using their culture test.  I am now being treated with I.V. Rocephin and not only has my clear headed thinking come back, but many symptoms have resolved; swollen glands, throbbing nerve pain in my head, muscle aches, throbbing stomach, gi distress, although I still have word recall issues and sometimes reverse words in a sentence.   I am finally gaining weight (I lost 20 lbs while sick and couldn't keep weight on) and many of the food intolerances I had are resolving.  I even have days now where I think about my future, because I can hope I actually have one.


  1. Amy - You are an AMAZING & strong woman, this is an AMAZING & powerful post, and I'm proud and grateful to call you my friend!
    Love you gurl!
    Kelly K

  2. Stay the course, Tiehel. Still not sure how you've gotten as far as you have, but am certain that it is because you are a fierce competitor and believe in who you are. Am glad that you continue to feel better, more yourself and stronger to advocate for a greater understanding of this disease!

  3. And didn't #11 suggest a rheumatologist which would mean going back to step one (aka #2)?! That's when you impressed me the most and rather than giving up you didn't miss a beat deciding to move FORWARD. Also important for doctors to know that the testing is faulty as well since most labs are not sensitive enough in their guidelines to what is considered positive, so use Igenex. Doctors: how about we stop calling your business a "Practice" and call it an "I already know what I'm doing. If I don't, I'll take the time to find out."

  4. Good on you for sticking to your guns and continuing to search for an answer. So many people would have given up. WOOT!

  5. Amy, I was just told today by an Infectious Disease Specialist that--despite blood test results which show likely Lyme infection and the classic bull's eye rash--it is impossible to contract Lyme in this area, and therefore I don't have it. He refused to extend my antibiotics even though my limbs have gone numb and are in pain. He says its stress. I know better. I was lucky enough to have the rash and the results and yet here I am. So I can't imagine what the others go through. I'm glad you're finally getting help. I hope I will soon. Good luck to you and thank you.