My 51 year old brother, Tommy, was training for a triathlon in the Poconos in 2012 and instead of getting stronger he was getting weaker. Pennsylvania is number 1 in the US for Lyme disease cases yet not one doctor at several top Philadelphia hospitals even thought to make a clinical diagnosis of Lyme disease or even test him. The CDC states Lyme disease is a clinical diagnosis and the blood tests can be used to assist with the diagnosis. Yet, no one considered the possibility. How sad, that not one doctor followed the CDC guidelines by making a clinical diagnosis of Lyme disease with the history of “running in the woods and I was getting weaker.” Medicine failed my brother. I hope his story prevents the loss of another life.
Tommy’s health spiraled out of control. Over the next two years he developed, brain fog, difficulty focusing, sleep apnea, left shoulder pain, depression, insomnia, night sweats, difficulty swallowing, night time drenching sweats, became unable to speak and difficulty with balance that caused many falls and head trauma. He developed diabetes, his blood pressure fluctuating from 280/120 to 70/40 within seconds and every time he stood, he passed out. He was placed on three blood pressure medications, one to raise his blood pressure and two to lower it — go figure. He developed this purple rash shown here that was ignored by every physician/hospital and continued to spread up his legs. My brother lost all bladder control and had to be catheterized four times a day, he had increased respiratory secretions making it necessary to be suctioned often. He told doctors his feet felt like they were stuck in cement blocks, this caused him to shuffle his feet to walk because of the extreme heaviness. Next thing he knows, that shuffled walk got him a clinical diagnosis of Parkinsonism and he was started on Parkinson’s medications, another nightmare in itself. Tommy consulted with top infectious disease doctors and top neurologists. They all missed it.
These doctors eventually labeled him with MSA, Multi System Atrophy” because they could not think of any other reason for his cardiac symptoms, his swallowing difficulties, his speech loss, his bladder failing, his pancreas being under attack and his sudden onset of sleep apnea. Tommy had two brain MRI’s, the first was on March 13 when the radiologist documented “there are a few scattered foci of increased signal in the white matter likely sequelae of chronic small vessel ischemic disease. He later had another brain MRI on September 14 and the radiology report stated there were two tiny T2 and flair hyperintense lesions in the white matter, (basically what was seen in the first brain MRI but written differently), but this time the radiologist actually wrote the following “these type findings are suspicious for mild chronic microvascular changes. He went on to write “clinical correlation recommended since other etiologies including MS or Lyme disease could appear similarly. “Wow, even with these findings, he was discharged with no follow-up treatment. This same hospital on a previous admission had Tommy evaluated by an infectious disease doctor. I was present during this exam, I clearly remember the infectious disease doctor asking my brother “is there anything that could have poisoned you” I replied “Yes, we need to find out what”.
But instead Tommy was discharged on more blood pressure medications and the diagnosis of MSA. At this point, my dear brother was scared to death because there is no test or cure for MSA, it is essentially a death sentence. It is important to mention that MSA is a clinical diagnosis just like Lyme disease.
Our first angel came into the picture, a physician’s assistant who was a dear friend of Tommy’s and had not seen him in awhile. She could not believe what had happened to her healthy, vibrant friend. She took him to a Lyme literate doctor who made a clinical diagnosis of Lyme disease since his symptoms began while running on wooded paths in the state with the highest cases of Lyme disease. He ordered a CDC western blot that came up negative but he did come up positive for two co-infections of Lyme disease, Anaplamosis and Mycoplasma Pneumonia. At this point, Tommy was virtually paralyzed, robbed of his voice and confined to a wheelchair. This doctor was our first hero, he started Tommy on IV Rocephin. Within weeks, Tommy was up walking and making progress. As Tommy was improving, we were informed that his Lyme literate hero was being forced to leave the state of PA for over diagnosing and over treating Lyme patients. How can this be? We frantically searched for another Lyme literate doctor. This next doctor took one look at Tommy’s legs and said “that is the worst case of Bartonella Vasculitis I have ever seen” and confirmed it with a blood test through Galaxy Diagnostics in North Carolina. Tommy was clearly full of Bartonella and since Bartonella has the ability to suppress the immune system, Lyme bacteria often go undetected. This is why a clinical diagnosis is imperative.
This doctor scheduled Tommy for a PICC line and started treating him with new IV antibiotics immediately. She sent Tommy to a Lyme literate neurologist who was able to get insurance to cover IVIG to help boost his fragile immune system. The new Lyme doctor warned Tommy, that the antibiotics would make him worse before better. This is because as the bacteria are killed, the toxins are released into the body. Our bodies can’t detox quick enough so Lyme patients often get very sick.
Tommy was in and out of the hospital. When he saw the Lyme doctor after being discharged from the hospital, she was very concerned with his blood work because his red blood count was low. She told him to go back to the hospital. He was readmitted to the same hospital with a GI bleed and remained without food until his stomach healed. In the meantime, the Lyme doctor was now uncomfortable treating my brother due to medical negligence of our health care system. I can’t say I blame her. My brother was very sick and a risk for any Lyme doctor to take on his care. These doctors are already risking their licenses everyday to help those misdiagnosed with this horrific disease. Unfortunately, the hospital and primary care doctor had limited knowledge on Lyme disease complications, making it hard to get proper medical and supportive care and my brother was once again on his own.
I began reading the book, “A twist of Lyme” and this is how I found his next hero, a nationally recognized infectious disease and Lyme literate physician located in DC. He was in the YouTube video “Under our Skin” which I encourage everyone to watch to see the corruption within our CDC. After reviewing the binder of medical records, he told Tommy “ I believe the Lyme bacteria has attacked your brain stem. This explained the severe neurological manifestations Tommy suffered from. He tested Tommy through Igenix lab. We got our first positive Lyme test two years later. At this visit Tommy was diagnosed with Lyme, Bartonella and clinically diagnosed with Babesia since drenching sweats is a classic sign of Babesia. Tommy communicated the best he could and he asked the doctor “can you get me better”, the doctor who was honest with his patients replied” You are very sick but if we don’t do anything, you will die.” We knew that was a possibility and Tommy was ready for the fight.
Tommy was on several oral and IV antibiotics. He was placed on gluten free diet to help decrease the brain inflammation. He was closely monitored. I live in New Jersey, Tommy was in the Poconos, and I called everyday, several times a day to get comprehensive reports from all the therapists and aides to fax to our DC doctor each week of any progress on worsening of symptoms.
We finally had hope. Tom’s purple rash was completely gone after 2 months of antibiotics, his bladder began working again and he no longer needed to be catheterized. He no longer passed out when he stood up, his blood sugarsimproved.
Tommy no longer woke up drenched, his blood pressure stabilized and was off all cardiac medications. He began walking with assistance again, his shoulder pain was gone and he was able to sleep.Tommy still could not speak; we had an appointment in DC at the end of June to set Tommy up with an eye gage system, a computer that would help Tommy communicate by using his eyes. He had physical therapy, occupational therapy and speech therapy several times a week. An IV nurse came in weekly to change his PICC line dressing and administer IVIG. We were on the road to a full recovery then…
On June 15 2015, I called my brother and could hear a lot of secretions in his chest over the phone, I told Tommy and the aide to call 911 to be sure he did not have pneumonia. He had come too far, I wasn’t risking it. I called the ER and spoke to the doctor “he actually stated “his lungs sound juicy but I’m going to order a chest x-ray” I was later told his x-ray was clear and they discharged him. I felt so relieved that my brother dodged another bullet. The next day, I received a call from the nurse’s aide who said she had to suction him a lot. I called back one hour later to find out she called 911 and Tommy died en route to the hospital due to respiratory arrest. I later saw Tom’s x-ray report that said “patient unable to take a deep breath but no previous change from prior chest x-ray. How is a chest x-ray valid when the patient can’t inhale effectively? I bawled my eyes out, how could medicine fail my brother repeatedly, how come our doctors, hospitals have no idea these ticks are destroying mankind? How come we can educate ourselves and understand the debilitating effects of Lyme disease and co-infections, but our physicians are choosing to turn their heads fearing the consequences of over treating and over diagnosing these diseases?
I joked with Tommy several times, that we should pack up all the ticks, send them to Iraq and bring our troops home never realizing the reality of this statement.
My brother lost his battle with Lyme disease not because of the disease but because of medical incompetence, medical ignorance and lack of education on the many different bacteria our ticks are transmitting. Our CDC in 2013 updated their website overnight from 30,000 to over 300,000 cases of Lyme disease occurring each year. The CDC does not even list Bartonella as tick borne infection, it is only mentioned that it could be transmitted by ticks but further research is needed. The research is right in front of their eyes and in our community but it is being ignored.
Igenix lab and Galaxy Diagnostics are laboratories that specialize in detecting Lyme disease and co-infections. Both of these labs are CLIA and CMS certified just like the top three CDC labs, the only thing they do not have is political backing so why are our physicians not accepting their expert results. The patients are in front of them chronically ill with no answers. This is tragic. Many insurance companies reimbursed patients for these blood tests, that should confirm their validity in itself. They have passed rigorous inspections with flying colors over and over again. The CDC tests are insensitive, missing the diagnosis 20–30 percent of the time. Our CDC labs only test for two Bartonella species when there are at least 26 species of Bartonella. Bartonella is wrecking havoc in our youth, causing depression, anxiety, panic attacks, joint pain, suicide and several other symptoms, yet our physicians have never heard of it. I am amazed how patients are told Lyme disease can’t cause so many symptoms. Think of the Lyme bacteria as a colony of ants, the colonies travel through the blood system, eventually leave the blood system and settle into our brain, joints, heart, liver, stomach, virtually any organ. Depending on where the bacteria deposits in the body will decide how symptomatic and ill you will become. This is basic science…
The question is how many of us have actually never been exposed to Lyme disease? Let’s face it, unless you were raised on a boat, we are all at risk for carrying the Lyme bacteria. New Jersey is ranked third in the US with the most cases. Is it possible, many people have Lyme disease but their immune system keeps it in remission and as soon as that immune system weakens due to illness or stress, the Lyme bacteria awaken? Similar to how the chicken pox virus lies dormant and returns as shingles when the immune system is stressed. The bottom line is it is Lyme disease until proven otherwise. Our physicians need to stop labeling patients clinically with MS, Parkinson’s, MSA, ALS, Autism, Mental disorders etc., without testing for tick-borne diseases through reputable labs first. At the very least, give these poor patients the option of paying for specialized Lyme testing before sending them down a path of doom.
My brother may have lost his battle with Lyme disease, Bartonella and Babesia but through his fight, he has saved so many lives including myself. I have referred over 60 chronically ill individuals and all were positive for Lyme and/or Bartonella. All are recovering on antibiotics.
For more information regarding this disease, visit www.ilads.org/lyme/about-lyme.php.
Eileen Valerio, RN