Florida TV reporter’s own Lyme story and long road to diagnosis
TV anchorwoman Nicole Sommavilla works for Suncoast News Network in Sarasota, Florida. This week, she started a multi-part series on Living with Lyme. It’s based on her personal experience. Click below to watch them.
Feb. 14, 2018:
Feb. 15, 2018:
Feb. 16, 2018:
Feb. 19
Tags : Lyme disease in Florida
It’s not just the woods to fear! I wish that doctors would tell people to do tic-checks ANYTIME they’ve been outdoors near woods, parks or lawns. Last year I picked up 3 ticks on my slippers in less than 3 minutes just walking from my deck to a tree in my backyard. In the springtime, the ticks are quite numerous in lawns when the ground is moist from dew and newly sprouted turf grass. I no longer go outside without tall boots on because I can’t afford another bite. I even wear boots when I play croquet!
Oh how right you are!! I have ticks in my yard, had some exposure gardening. The lovely deer bedding down so happily by my little pond, until some started looking sick. I never did put it together until years later. My neighbor totally cracked up, became super strange and ill. They are doing neighborhood surveillance studies overseas; don’t know why they don’t do anything smart like that in US hot spots.Here CDC just keeps denying the ticks are a problem, and our doctors still don’t have Lyme on their radar.
Kathy, the last 3 tick bites I got were right in my backyard in coastal VA and they set the Lyme avalanche in motion. I have no deer in my yard but I have a lot of birds, squirrels, rabbits and the year I got sick we had a lot of mice. I have lots of acorns from the Oak trees. The mice carried fleas into and under our home and at least one tick indoors that crawled up my leg while sitting at my desk and bit me on my panty-line. I actually felt the bite which is typical for the aggressive female Lonestar tick. I removed it but I was already unknowingly symptomatic from other bites in previous months. A week after that bite at my desk, I was in the ER with sepsis.
I’ve learned to stay away from pine needles because ticks LOVE the damp coolness that they provide. I can’t even watch people walking through pastures on TV without exclaiming, ‘ TICKS! Run for your life!’.
So sorry for all these people. Will the medical world EVER wake up and listen to them too.???
I fought Rocky Mountain Fever for 4 years ,starting in 2008,and in 2013 one doctor took her time to listen to me , by this time I had flat lined in the er twice, and had over two hundred seizures, I’m so thankful for her , I’m disable today at 60 but I’m still here , and the mountain of meds and essential oils keep me going , thank you lord
GMD- No they won’t. I got Lyme in my community and had three different supposed medical professionals tell me I didn’t have Lyme/Bartonella and if I did, I “couldn’t possibly have gotten it here.” Not that they ever asked if I’d been to a “hotspot” but people are NOT being diagnosed/misdianosed even in Lyme Connecticut! One of these idiots here couldn’t READ my detailed lab results from Igenex and insisted I was negative, though even with Lyme-brain, I could see I was positive – even by CDC standards! Bartonella is very common – known as Cat Scratch Fever, because people commonly get infected by their kitties. I repeatedly TOLD them about my outdoor work and my work with wildlif, feral cats, and mosquito abatement. They don’t EVER listen, nor even think! A computer cranks out test results and will say “normal range” for RBC etc, but they don’t know how to do the critical thinking to see how the pieces fit together (for example Bartonella attacks red blood cells) and while a basic test will read normal, it will show odd numbers and cell size. Lastly, if they catch and treat it promptly, all the specialists, emergency rooms and insurance companies wouldn’t make a bunch of money.
Thank you for telling your story. I see you went to Dr. Phillips ?.
Thank you, thank you! – for bravely sharing your journey with Lyme.
May Love and Courage fill you always.
Dan M.
British Columbia, Canada
Nicole,
thank you for putting your personal story and struggles out there for all to see and hear. Not sure if you are allowed to do this, but would love for you to add future segments regarding those of us who have Lyme disease and mold toxicity and even mercury toxicity. I have all 3. I used to do triathlons. Now I mostly stay in bed where I am most comfortable. Treatment protocols are limited and the docs who can treat us – well most of them don’t take insurance for fear of being shut down for malpractice by AMA and insurance companies so the expense for us is crazy. And what makes it worse is many of us get to the point where we physically can’t work anymore – which is my case. So we have to sell our beautiful home and move to a cheaper state so we can be in a position for me to get well. Please consider adding patients with CIRS to your series!!!! thank you!
I have often wondered if I have chronic Lyme, I have suffered with long periods of debilitating fatigue off and on for years, the last few years, pain, up and down entire spine, joints of the hands, neck etc, very unusual psychological symptoms, like, my thought process doesn’t seem in synch, I don’t feel like myself, I don’t feel ok, sometimes I feel like I have walking amnesia, my internist laughed at me, did do a basic Lyme antibody test, said it was negative. To make me feel better put me on a two week course of 1 antibiotic. Didn’t change anything, I was an avid hunter for 23 years, I have 3 dogs.ir us a struggle to keep going, they keep trying antidepressant after antidepressant, nothing helps, I’ve read Lyme cannot be properly diagnosed with a simple antibody test.I am open to suggestions.
Recommend you read Dr. Horowitz’s book “How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease.” It can be purchased online and is also available in many libraries. There are other good books, too. Here’s info about some of them: https://www.lymedisease.org/touchedbylyme-books/
Thanks so much
Your history is suggestive of Lyme. Lyme is so difficult to diagnose (often, not always) that most physicians will miss it unless they have a high degree of suspicion. Part of the difficulty is that common antibody tests do not cover all the different strains of Lyme bacteria. On the other hand–Lyme-like symptoms are found in other conditions. That’s why obtaining a diagnosis is important. Different diseases are treated differently, and what is beneficial for one could be harmful for another. I would suggest finding an internist who shows an interest in treating Lyme and is willing to test for the less common strains.
Thank you, I really think it’s a good possibility, recently my hip joints hurt, I have unresolved bladder issues, 4 years now, quite severe at times. I’ve been labeled, but I know something is wrong.
If your arthritis is migratory, that is supposed to be typical of Lyme, and that detail might get your doctors to consider the possibility of Lyme more seriously.
Mel, I too am an outdoors person and I believe I’ve had tick born infections for over 25 years.
I’ve had a hundred plus tick bites in my life.
I’ve had bladder issues since 2012 due to Lyme that I didn’t know I had until 2016. I’m also having the same issues as you but I wanted to suggest acupuncture to help strengthen your immune system. It’s SO important, regardless of medications or supplements, to strengthen your immune system. I just changed to a new acupuncturist and he is amazing. He told me my bladder and kidneys were toxic and after the first treatment, my urine was so clear that we could not tell it from water. I don’t know if that is necessarily a good thing or not but I also have NO difficulty urinating now and no more blood in my urine that was there for 3 years. Before treatment I had bladder difficulty because the nerves that control my bladder were compromised and so I either had too much urgency or I couldn’t go at all. The connective tissue was also damaged due to poor nerve function. There are many things you can do to improve your quality of life ( herbs, supplements, dietary changes, exercise) but you need to be proactive and stay committed through the ups and downs. Be patient but steadfast and better health will come. I still have bad days but I know they won’t last.
Try getting tested through Igenex Labs- they offer comprehensive testing for Lyme and co-infections. Hunters are definitely at high risk because of hiding in thick underbrush where ticks frequent. Also, the deer have ticks on them that migrate to the nearest living thing…
PS, Mel, try a different doctor! They kept trying to put me on anti-depressants, but I told them “NO, I want you to find out what is WRONG; seizures, tinglings, getting lost driving home in a small town – that is NOT symptoms of depression!” Oh, yeah, and the sudden loss of vision in my left eye, all vision going “gray”, and the numb feet, stabbing pains, creaky neck, then knee, then hips. Yeah, all that weird stuff is depressing,as is loss of freedom, clear thinking, and mobility, but it won’t be cured by anti-depressants. Lyme and co-infections are bacterial infections, each with it’s own favorite area to hide, and each requiring different medicines/herbs to fight.
I took Dr.Howitz’s book “why can’t I get better” (his first book) to my doctor and asked if he was willing to read it – the book has a physicians section in back. I am very lucky he is willing to LISTEN, and I refer him to the sections of book that refer to what areas I’m having problems.
They did not emphasize: The symptoms and presentation are very, very different from one patient to another. Different timelines, different organ systems, different severities. And the easy diagnostic tests are unreliable and the reliable tests are esoteric and expensive. And the infection–unless caught very early–is probably permanent. That is to say, cannot be eradicated. The patient has a management issue for the rest of his/her life, much like for example, diabetes.
It still bothers me that chronic lyme has almost the exact same symptons as M.E., and yet they are never talked about in the same sentence. Also, the mention of the old terminology chronic fatigue syndrome, which should be M.E. or at the very least SEID (systemic exertional intolerance disease), which the CDC now calls it. For me, sudden onset M.E. (SEID) 3/29/1984 and still no cure in sight!
James, I feel your frustration and also wonder about the ME/CFS. I also wonder about MS and ALS being tick born pathogen-activated diseases. My father died with ALS a few years ago and my stepfather died with MS in 97. We were all outdoors people and we lived on a mountain. My very over-simplified theory is that viruses- especially Herpes- are to blame for our chronic symptoms. Herpes wreaks havoc on the nervous system and immune system and are chronic systemic viruses. Herpes is a serious virus and can actually kill people. I have Herpes virus and have had HSV-1 since I was 10 years old- actually anyone who had had chicken pox has Herpes. But I’ve done a lot of professional research on Herpes and I can tell you that what we know about it today is quite different than what we knew in the early 80’s and we still don’t know just how dangerous it is. Back then CFS was caused by the Epstein Barr-herpes virus. People who had Mono were usually diagnosed with CFS.
I recently watched the documentary, Unrest, on PBS and I cried because I realized that at my worst, my symptoms are identical to hers. I don’t know how I have survived being all alone with no help at all. I think that Jennifer Brea would be an excellent support and source of information. If you haven’t watched the documentary, you can view it on online at Netflix, PBS, and maybe youtube.
THANK YOU, Nicole, for sharing your story and doing such a concise presentation of this complicated disease and the nuances of living with it. My daughter is 14 and she has been almost completely home-bound for a year and a half. I am going to share this with her – the most important message at the end – she is not alone!
Hi, I have had the darkfield microscopy done and you can see the lyme spirochetes emerging from my red blood cells.
They are also present in spinal fluid using the same darkfield -OIL method. Spirochetes have been thriving inside parasitic worms like nematodes that are present in our spinal fluid. https://vimeo.com/166688480
Nicole, Thank you for your story and the TRUTH about lyme; it is hard to diagnose, hard to treat and impossible to cure. I have dealt with this for close to 60 years. I ended up critically ill in the 90’s and after 5 yrs of antibiotic therapy (and alot of Rx meds), I was paralyzed from the neck down, anorexic, and almost died. I was given a sentence of 3yrs to live in 1999. My husband had 7 hr heart surgery and all 6 of my kids were diagnosed with lyme. Today I am doing great, NO meds. since 2000, all holistic, living a full life. Thank you Lord. Mel–hunter for 23 years? Yes, I would bet the ranch that you DO have lyme. DNA Connexions Urine test is the way to be tested. Lyme LOVES the bladder! Whether you choose medical, holistic, something has to be done. I was also diagnosed with breast cancer in 2005; again, direct connection to lyme (see Dr. Dietrich Klinghardt). No cancer, fantastic, health at 60. My prayers are with you all.
blessings
Dr. Sue Massie, ND
New Jersey
I am a VERY high energy person. My energy levels have declined a bit but my first symptoms were Peripheral neuropathy of the face and feet. an odd presentation. I told my doc I spent a good deal of time in CT and NY and live in WA but an avid gardener so Lymes? No she said – we don’t have that here. I was diagnosed with idiopathic progressive non-linear peripheral neuropathy. I am not overweight or diabetic so – western medicine gave up. I found a doc in my system that is functional and western and she ran a western blot with a reputable lab. Came back positive (5 year diagnosis timeline) I also have been diagnosed with coinfections. so goes the fight and hope that this doesnt become MS or ALS as the assault continues.
Don’t worry- finally a positive Lyme diagnosis – no it won’t turn into MS; lucky they got it right! The treatments are so different.
Nicole,
I admire you for sharing your story on the news. I also admire your courage in fighting this battle. I think the end of the segment was what I agree with most. That you need a really good support system to get through this journey. It is so difficult that we fight a disease invisible to the world.
I am so glad she took her position to bring awareness to this disease. I just hope my friends and family listen to what she said to get an understanding of how debilitating it can be on some days….most days.