This section is M’s Lyme Story. Medical and FDA Disclaimers Below.
M’s Lyme Story
Thoughts on the System
M’s Lyme Story:
My husband was bit by a tick mid-May 2014. There was a wide purple rash. We figured he was having an allergic reaction. He had a history of bad bee stings and spider bites. He drenched the bed with sweats within a few weeks. All the other symptoms were soon behind. By June 15th 2014, we went to our General Practitioner . Lyme was not brought up as a possibility at the GP appointment. He was sent for a CT scan and told to go to a neurologist for his symptoms. The day after the CT scan, through internet research, we discovered my husband must have contracted Lyme. He had all of the physical and neurological symptoms. The length of time between the tick bite and the full spectrum of neurological symptoms were very fast in M’s case. For many it takes months, or sometimes years, to develop all of the neurological symptoms. Lucky, but not lucky, because it helped us identify the problem quickly.
His symptoms went from lengthy to scary which prompted an ER visit on June 18th 2014. M would have a type of vertigo attack where he would slump over. And, the ticking was getting worse. A Western Blot was ordered at our request. An EKG was given as well. It did show the obligatory arrhythmia (slow heart rate) that is common with Lyme suffers. At this time, M was giving a prescription of Doxycycline. The release paperwork did NOT include the Lyme Disease Disclosure Act as required by law in VA, only information on Joint Pain and Tics. (Tics not Ticks) No one called us. Also, the hospital did not send the results. We asked for them at a later date.
To get the neurologist appointment, I basically begged because neurologists are always booked (much like Infectious Diseases Doctors) months out! Amazingly, they agreed to squeezing us in in a week! Luckily this doctor did admit to the existence of Lyme disease. While this doctor was not afraid, he was not Lyme Literate. On July 9th 2014, the Neurologist did not order new tests for tick-born diseases. M was given 90 more days of Doxy. 100mg 2x/day. An extraordinarily inadequate dosage for neurological Lyme. A couple of days later the EEG showed epileptic syndrome, and tremors to the nervous system were present. Once again, lucky, but not lucky, at the same time. We believe that 100 of doxy days kept M from getting worse while we looked for answers. (Some Lyme patients will lose the use of appendages, become wheelchair bound, or require the use of a pace-maker!) While the dosage was horribly inadequate, amazingly, we do believe it helped M get through those days while we looked for more help.
M’s hundred days of 200 mg of Doxy were over mid October. He seemed to be slightly better at the time. Still ticking, still sweating, still in pain, but manageable. M was able to continue working. Amazingly receptive response to a low dose! Most neurologically effected Lyme patients would experience NO Change to that protocol at all. By January, most of the symptoms where back. By March, he was slumping over again. No Infectious Disease doctors that I called were taking Lyme patients.
At this time, I discovered the Richmond Lyme Alliance on Facebook. They gave me the correct places to go on the internet for information. This is the list of websites along with more resources: Lyme- Recommended Reading / Resources. In addition, they gave me a list of “Lyme Literate” doctors the group had been using in the area. The list is only about 12 doctors strong. The areas included went from Virginia through DC to Maryland. We spent days doing research on the doctors and finally made an appointment.
On April 21st 2015, I went to pick up my husbands Medical Paperwork to show to a “Lyme Literate” Doctor. The Western Blot results were present. One band was positive. The only disclosure on the test was the CDC information on what constitutes a positive result. Therefore, M was, according to the CDC, Lyme negative. Again, no Lyme Disclosure Act present.
The Lyme Literate Doctor doubled the daily doxy amount (for some people its tripled), added two other very strong antibiotics, a couple of supplements and probiotics too. This went on for the next 4 months. The testing came back negative on the Lyme again and positive for Mycoplasma. A well know Tick born co- infection. The pills were hellish. Somehow my husband was able to continue with the meds given orally. Many people need an IV catheter placed to administer that level of meds. The Lyme symptoms slowly got better!
At the end of August, the doctor took him off the medications. He is to come back if he gets worse at any time. (Update to the original Story: Another 6 weeks of meds were administered in November 2016. While he was much better, the healing became stagnant, and so M went in for another round of treatment) Our understanding is however long the disease went unchecked, is how long it will take to get back to feeling like yourself again….. or close to it. Matt is close to the 3 year Mark (from the original tick bite) and doing very well. (updated 4/25/17) He still has occasional joint pain and the tics are still present under various stresses. We’re elated! He is a true success / remission story!!!
Next we are trying a Metal Detox. The story is that people that have a lot of lingering neurological symptoms can be suffering from built up metals due to the illness.
Thoughts on the system:
Through my familiarity with the poor quality of health care for those suffering from Lyme and other co-infections, I’d like to convey where I find fault in the system. In addition, I have included my Husband M’s Lyme disease story.
First, the status quo needs to change. We need doctors to become knowledgeable about new working treatments, and to begin to treat Lyme patients effectively. There are many sufferers waiting to visit specialist after specialist (neurologists, orthopediologists, rheumatologists, neuropsychologists, ophthalmologists, and so many others) and finding no answers. Because of inaccurate testing, prudence demands that the patient exhaust all other possibilities. By the time you find proper help, your loved one could be bedridden or dead. I don’t know why we have to wait for post mortem biopsies to prove the existence of tick born diseases. Furthermore, researching Lyme on the internet is pure folly. Unless you know which internet sites to look at, you will be barraged by misinformation. After a year and a half of failing to find a doctor that knew about treating Lyme, I found The Richmond Lyme alliance on Facebook. They were able to provide us with some REAL direction. We found a doctor that was able to help. Since the information out there is at a pathetic minimum, many people are not going to figure all this out in time, or at all, as we did. We were lucky. We had a tick bite to remember. Many people don’t. We got in to see a neurologist quickly when the symptoms turned scary. He gave my husband a long, but insufficient, dose of doxycycline that bought us some time. Doggedly, he was able to continue to work and function. We did not try to function inside this broken system. Rather, we went after research. Others struggle much harder than we. Others try to function with doctors that should be able to help, but can’t or won’t. Rather than continue to waste our time, we looked for answers on our own. In short, it took two married, collage-educated, mature, tech-savvy, thoughtful adults a year and a half to uncover the truth.
Things That Must Change:
- ALL Infectious Disease Specialists and Neurologists should be qualified Lyme Disease Specialists. When Lyme is suspected, they should have a protocol. They will tell you, over the phone, they do not treat chronic Lyme. (They don’t treat Lyme or other co-infections because they think there are no protocols. There may be no status quo, but there are protocols.)
- These Doctors should be protected by the law to treat these people. The protocol is dangerous. People will die from the treatment. The medications are intense. Some people have to get a catheter in their chest to take their meds intravenously. However, more people will die without the proper treatment. More people will live in misery without these treatments.
- Full disclosure with intelligible yet understandable vernacular should be signed by the patient to protect the doctors further, as well as the pharmaceutical companies.
- Those Doctors should be in-network under all insurance companies by law.
- The internet is full of misinformation. As with most ailments, the internet is a plethora of half-truths and outdated information. With Lyme, the misinformation is tragically bad. The battle to find help is daunting! Awareness is cataclysmic. We need easy-to-use, easy to-to-find, sources.
- To those that think it needs to “run its course”: Healing is the part that needs to “run its course” not the infection. I think un-checked; it could leave you alive, deteriorated, damaged, sick, but alive. If you have an immune system problem or autoimmune disorder, you could die. There should be a plan. Under proper care with antibiotics, people with healthy immune systems could achieve 100% of normal. For healing time to occur, the consensus is that however long the patient had the disease unchecked, is how long the patient will take to heal. Those patients with depressed immune systems or those with autoimmune disorders are going to need a much longer time to repair the damage.
The alternative is unthinkable. The alternative is to wait for accurate testing and scripted medication to work through to the status quo. While Johns Hopkins is working at warp speed right now, people (adults and children) are dieing of heart stop due directly to Lyme disease. Again, why do we wait for autopsies? Unacceptable.
My husband is probably going to have one of the longer recoveries. Is he still exhibiting symptoms because of the disease? Or is it long term damage? Is it permanent damage? Is his autoimmune disorder affecting his recovery? (My husband has an autoimmune disorder; Thallassemia Minor. Therefore he is a Thallasemia carrier. How is this affecting him?) There is no test to prove he is done with the disease. There isn’t even a test to prove you definitively have the disease to begin with. Will he ever get to 100%?
Thank You to all that are in the fight!
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