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Saturday, January 24, 2015

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Friday, January 23, 2015

Dr. Tiffany Griffiths, Part 1 - The Personal Side of Lyme

Interview with Tiffany Griffiths PsyD

Part 1 - Lyme Disease - The Personal Side of Lyme


I met with Dr. Tiffany Griffiths, recovered Lyme patient and owner of a very successful holistic behavioral health agency with three locations in Northeast PA. Tiffany, a Doctor of Psychology, graciously shared her story of Lyme Disease, from diagnosis to recovery. Our interview started out in her car as we dashed to grab a quick lunchtime salad and ended with me balancing my laptop on my knees in her newest office located in Clarks Summit, PA as she nibbled her salad, sipped coffee, and fielded texts from clients. She is, as you can tell, a vibrant and busy woman. Dr. Griffiths and her husband have three young children and, together, they have navigated the Lyme road. I’m pleased to share Dr. Griffiths' story with you now.





Dr. Griffiths, what would you like the readers to know about you, your family, and your career?

Regarding myself, I have reflected a lot on what about me has helped me recover so fully given the number of years I have had this disease as well as the number of other patients who have not done as well.  I would have to say it is my persistence and drive.  Once I get something in my head it is hard for me to let it go until it is completed.  That doesn’t always serve me well, but with this disease it certainly has. 

You mention your drive and persistence. How did these traits contribute to your recovery?

First of all, the biggest thing they did was help me in getting all the way up to New York for appointments with Dr. Horowitz. I tolerated the drive, the costs, the rules (food restrictions and medication schedules) etc. If I was not driven to get well I may have decided all of that was not worthwhile. I had a lot of faith in my doctor, as well, which had a lot to do with it.

Secondly, they helped me in getting through the difficult times during treatment. Take pain, for example. Lyme treatment can often increase symptoms, especially in the beginning. I had a lot of pain. For me the pain was an indication that the treatment was working and I needed to hang in there. Again, my motivation to get better and my faith in Dr. Horowitz allowed me to re-label my experience as healing rather than focus on the discomfort.

Was your family able to help you in your recovery?

As for my family, they have been so supportive and understanding.  My moods were all over the place, my irritability sky high, and my patience, lacking as I went through treatment.  My husband picked up what I had to drop, took over most of the childcare and household tasks, and encouraged me to slow down and take care of myself.  I could not have asked for more.  And my kids, they took it in stride when I would lose my temper one minute then be apologetic the next. 

And as for my career, I actually did very well while going through treatment.  As a therapist I hope to help my clients understand the need to be: gentle with ourselves, careful with expectations, practicing self-care, present in the moment, and tolerant of others. This was a time when I needed to do that for myself and I truly feel that in practicing these things myself I was able to model it for others.  This ultimately helped in my healing as well. 

Now that you have recovered, do you take any particular steps to protect your recovery from Lyme Disease?

Emphatically, yes!  I have become so hyper-aware of the need for good self-care and balance in my life.  Do I fall off the proverbial wagon?  Yes.  But I get back up over and over again.  I have a very clear memory of the way I felt when I was symptomatic and I never want to feel that way again.  The more specific self-care tools I try to use in my everyday life are transcendental meditation, yoga, mindfulness, getting 8 hours of sleep, limiting carbs and not skipping meals, continuing to say no when I need to, laughing, having fun with my kids, connecting with those important to me, and attempting to balance my life. 

When were you diagnosed with Lyme Disease?

In 2007, before opening my first practice, I was telling a friend and colleague about my growing list of health concerns. I was in pain all the time, and felt so fatigued. In addition I experienced poor concentration, difficulty with expressive language (the tip of the tongue phenomenon), shortness of breath, an increase in irritability and being easily overwhelmed, sleep disturbance, weight loss, and a whole lot more minor symptoms that I never even noticed until years later when they were gone.  One example is that when I would drink alcohol, in any amount, I would suffer the worst hangover symptoms the entire next day. I thought that was normal and wondered how so many other people could function the next day. I do not have those symptoms any longer.

At the time of my Lyme diagnosis I had a diagnosis of Fibromyalgia, but it just didn’t seem like an accurate diagnosis. I went from doctor to doctor, each time hopeful that this would be the doctor who would help me, but they all kept telling me I had Fibromyalgia. From what I’d learned and read, what I was experiencing seemed like more than that. My friend told me about her diagnosis of Fibromyalgia, and how it turned out to be Lyme Disease. Not only did she have Lyme, but she had other infections, also Tick Borne. Through my friend I started researching Lyme, ILADS, and diagnostics. My friend told me that her doctor used a specialty lab called Igenex because their tests are more thorough. Sometime over the course of that year I was fortunate to attend a local lecture on Lyme Disease. That was the first time I felt hopeful about my situation. I heard stories similar to my own, and the woman who hosted the lecture told us how she went from being wheelchair bound with a diagnosis of MS (Multiple Sclerosis) to being completely well after an accurate diagnosis of and treatment for Lyme Disease. For her it all started to get better when she got a new doctor (Dr. Horowitz) and a blood test from Igenex, the same lab my friend used. Dr. Horowitz spoke at the lecture and his passion about this topic, and the many people he has seen returned to health, convinced me that I had to keep trying. I started with a blood test through Igenex.

I remember the moment of my Lyme diagnosis so vividly. I was lying in bed in the early evening, exhausted at the end of a busy day with my preschooler, my toddler, and my new business. My husband brought the mail and there it was – a white envelope with Igenex written at the top. I remember opening it carefully and pulling out and unfolding the white pages, and scanning for the results. “Oh my God!” I cried. “I have it!” and I just cried. Maybe I can be helped, I thought. It was still business hours in California so I took advantage of the time difference and called Igenex. I asked them, among other things, to explain the difference between their test and the one that the IDSA (Infectious Disease Society of America) recommends.

Tiffany, can you remember what the Igenex representative told you on the phone about the differences? Did he go into detail?

I don’t remember much because at that time this was the first I was hearing about things like bands, specificity, selectivity, CDC guidelines, etc.  I do, however, remember him mentioning that they test for more bands.

The next day I called Dr. Horowitz and was put on his very long waiting list. While I waited for him to see me I found a local doctor who said she would treat my Lyme disease. She did, but only for a few months. When I started to feel better she stopped all treatment. I believed I had been sick for a long time and asked her about Chronic Lyme. Did she think I could have it? She was very dismissive and told me that since I was feeling better there was no need to continue treatment. I had no choice but to stop my treatment and take a wait and see approach. My name was still on Dr. Horowitz’s waiting list and so I knew that if I got worse again he would eventually see me. I waited, and early 18 months after my diagnosis I was finally on my way to see him up in New York, symptoms raging and very, very hopeful.

Were you diagnosed and treated for any co-infections?

Dr. Horowitz didn’t start treatment right away. Instead, he tested me for many issues and, other than a mycoplasma infection, there were no other Tick Borne Diseases indicated. He also did a lot of testing to see how my immune system was functioning. He wanted me ready. He explained it by saying “Your body needs to be prepared for the biggest fight of your life.”

According to the test results my heavy metals numbers were too high and so I started chelation treatment. He also found my adrenals numbers were very low. He put me on several supplements and herbal remedies, and a very strict diet (like a hypoglycemic diet) which I stayed on through the duration of my illness. When my metals were down and my adrenals were up, and when my immune system was strong enough to handle the fight he was ready to start treatment for Lyme disease.

How long did your treatment with Dr. Horowitz last?

Dr. Horowitz treated me from February of 2010 until December of 2013. If I start to feel poorly for any reason I call his office and they take me in just to make sure my recovery is still okay. So far, so good. My last “relapse scare” turned out to be unrelated to Lyme and totally related to nursing and caring for a very active older (and heavier) infant. It was a relief to know that it wasn’t Lyme at all, but the worry is always there in the back of my mind.

As a patient, what were some of the most difficult obstacles you had to overcome with regards to Lyme Disease?

The Financial burden was huge. Off the top of my head we spent over 30 grand out of pocket, and I know that is a low estimate.

The diet was rough – giving up sugar was so hard. Sugar made me feel better, but I was committed to healing and so I complied.

It was also hard facing the fact that every change in medication would result in returning Herxheimer reactions (herxes). It’s really hard taking medicine that they say will help in the long run but knowing that you’d probably feel a lot worse for a while.

Pain was difficult, especially during herxes, but the hot tub really helped with pain control. My neurological symptoms (spams and rigid limbs) would flare from the hot water, though, so my husband was constantly worried about me when I was in the hot tub – always checking to make sure I was safe.

I experienced two miscarriages while I was undergoing Lyme treatment. Each time we wondered if the Lyme was to blame, but in the end tests on the babies indicated severe chromosomal abnormalities. They could not have survived, but the presence of Lyme disease made the already heartbreaking experiences more difficult and stressful.

The physical and psychological trauma of the miscarriages heightened my Lyme symptoms tremendously.  It was then that Dr. H and Lauren decided to start the IV Rocephin.  

Please stop back next week on January 30 to read Part 2 - A Professional Perspective on Lyme Disease.

You can find Dr. Griffiths on Facebook  and Dr.TiffanyGriffiths.com.

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