Dreams derailed by lack of Lyme diagnosis and treatment
This is one of a series of guest blogs by people who have enrolled in MyLymeData.
By Sandy Reyes
Every young person envisions how their life will unfold. I was no exception. I had some dreams that were somewhat ambitious. I earned a degree from the University of Delaware, as the first woman in my family to graduate from college. I was a full-time day student and worked two part-time jobs, seven days a week around my class schedule.
The next dream was law school. I graduated, passed two state bars including Delaware’s, and began my legal career. In 1991, shortly after starting work at the Delaware Attorney General’s office, I started not feeling well. I had low grade fevers, headaches, joint aches, stomach problems, back aches, extreme exhaustion and dizziness.
I was insured through an HMO and visited my primary care doctor frequently. I was misdiagnosed with fibromyalgia, sinus infections, Meniere’s disease, and IBS. Months went by between each diagnosis as each required a referral. Then the months stretched into years. At one point, I was on steroids and antibiotics and had a Lyme test that came back negative. I understood at the time that even in the absence of a positive test, a diagnosis based on symptoms was the recommendation, but that diagnosis never happened.
My doctor told me to “stop thinking like a sick person.” About two years into the process, my health deteriorated to the point where I went to bed as soon as I got home from work. One day, leaving work and trying to walk to my car, I was in so much pain that I needed to stop and hold onto parking meters to balance myself and rest.
In the spring of 1994, I had no clear diagnosis and was only getting worse. I could not sleep and felt unwell every day. I resigned my job as a Deputy Attorney General.
My husband and I had gotten married shortly before this time. My doctor said, “Perhaps marriage doesn’t agree with you.” She no longer referred me to other specialty physicians despite my insistence that I felt sick—like the worst flu ever and then some. My family doctor recommended counseling and bio-feedback.
Because I was so ill, I decided against having children. I not only didn’t have the energy, I also feared I might pass an unknown illness to my child.
In the spring of 1995, I found an infectious disease specialist. Eureka! This doctor looked me in the eye and took me seriously, promising to find an underlying cause of my distressing symptoms. He believed the other diagnoses were simply based on pieces of what he believed was one underlying disease process.
The very last test he ordered was for Lyme disease. My abnormal results were off the charts. I was told I needed to be admitted immediately to the hospital, which I was in July 1995.
A spinal tap indicated that Lyme was affecting my central nervous system. I started four weeks of Rocephin. After a second course of treatment that fall, I turned a major corner. Insurance companies probably wouldn’t approve this treatment today.
My treating doctors believe I probably had had Lyme disease for three to five years by then, based on blood testing and examinations. After the second rounds of infusions, tasks that were complicated for me when I was initially diagnosed became easier. My life was coming back to my new normal.
I still have flare-ups and become light-headed, have generalized achy joints, including headaches, and have lab work that shows infections. I have been diagnosed with post –treatment Lyme disease by my specialist. I still feel the stigma of Lyme disease and talk very little about my health.
Things have sadly not changed much in the 35 years since Lyme disease was discovered in Lyme Connecticut. What has changed is the extremely large number of people with tick-borne illnesses. The treatment for Lyme disease is typically two to three weeks of doxycycline. If the disease is caught early with the telltale bull’s-eye rash and tick bite, that treatment might be effective. I neither saw the tick nor got the rash, and a great majority of people never do and remain undiagnosed and untreated.
I’m sharing my story in hopes that other people will not have to repeat my experiences. That’s also why I’ve signed up for MyLymeData.
This patient-powered research project pools information from many people with Lyme—about their symptoms and what treatments have helped or not helped. That kind of information has never been collected from Lyme patients on a large scale before. It can help point researchers in the right direction—towards finding a cure for Lyme disease. Please join me and enroll in MyLymeData today. Let’s break new ground together!
Click here for more information about MyLymeData.
Sandy Reyes works in Human Resources for the State of Delaware, teaches at Wesley College, and is a member of Delaware’s Lyme Disease Prevention Task Force.
- January 26, 2016 at 9:23 pm
I cannot help but wonder if you have had dental problems. My last LLMD dropped my treatment. I recently had dental surgery on my lower jaw. Some holistic and biological dentists will work on your teeth but say you really don’t need testing. My dentist packaged a sample from the surgery and I sent it to dentaldna.us. I so have Lyme and many other very infectious pathogens.
- January 29, 2016 at 2:23 am
I had never heard of dentaldna so I checked out their website. Did you have the full test or the Lyme panel? They say the Lyme panel is a urine test but they tested the tissue from your dental surgery, right? So the full test also finds Lyme? Interesting website. Didn’t know they can do a DNA test for gluten intolerance, Alzheimer’s risk, ability to detox mercury, etc, just with a cheek swab. And the prices were not that outrageous, $250-$450, you pay that for any medical test not covered by insurance. Now to find a doctor willing to send in the samples.
- January 29, 2016 at 12:42 pm
Rockin Cowgirl. I asked dentaldna to run the tests on the sample from my jaw surgery because of the super oral grief I have had since 2009. Dentists, doctors want to see something with their naked eye. I have no red gums, no swelling they can see. I was so very tired of being told I had no symptoms. They do not listen. I had 3-D xrays that at least showed cavitations. Infection on the xrays could not be seen. Finally a holistic dentist who listened to me. I personally attribute this to very poor blood flow in my jaws. Why??? Too much epinephrine with dental work all my life. Effects of pathogens??? I have no answers But boy the burning from the discharge, each “sore” that cannot be seen so sensitive. Swelling that I can feel. Pain getting worse, slowly, but after 7-8 years, torturing. I can easily tell the discharge that I cannot stop from going down my throat is causing extreme gut, IBS problems. I know my teeth and gums were the source. I had two tests the full panel, and the Lyme test done from the same sample. I did not want the urine test. they were very accommodating. But I had treatment from 2002-2009, and did just fine. I did not know those little buggers were hiding in my teeth/gums/jawbones. That is why I am trying to warn other Lyme patients. It is actually well-know the mouth is a hiding place. How to prove it was my dilema until dentaldna. Testing was expensive, but any really qualified doctor can “see” the results. It is not a “dental” problem, but a pathogen problem.
I did not do the gluten test. I have been tested for gluten more than once in the past. According to those tests, I am not gluten intolerant.
Thank you Sandy for sharing your story. I am saddened that she could not be diagnosed years earlier. unacceptable. She need not have lost her job, not been able to have children. Just so very sad. Testing for Lyme and all its buddies should be routine, when a baby is born, when you get sick at any time you request it. Unacceptable Close-minded criminal establishment medicine. You cannot walk into any establishment medical clinic today without being at least asked if you have been to Africa in the recent past. A dna test for all known pathogens, blood, urine, tissue should be routine.
- January 30, 2016 at 11:20 am
Agree GMD! Of course it would help if the tests were more accurate. I recently read in the Star Tribune (Minneapolis paper) that the state of Minnesota wants to test all pregnant women for HIV to prevent congenital transmission. Good deal but they should be doing the same for Lyme and it’s co-infections. Sure we have HIV here like any other state but you are more likely to get Lyme in MN.
Sandy, you said you still feel the stigma of Lyme and talk little about your health. Please share your story. People need to know about this. The stigma of Lyme and the barriers to treatment will go away the more it is talked about.
Thank you GMD and Sandy for talking about your dental issues. Definitely sounds like mouth infection and bone/teeth deterioration to me. I have not had those problems yet but now I know what to watch for if I do. Dentists need more Lyme ed too.
- January 30, 2016 at 4:42 pm
“Finally a holistic dentist who listened to me. I personally attribute this to very poor blood flow in my jaws. Why??? Too much epinephrine with dental work all my life. Effects of pathogens???”
EPINEPHRINE, lyme/co-infection patients should NOT allow them to use this on us. it suppresses the immune system.
i was told this by a good w. coast activist where a MD talked about this at a lyme support group meeting.
HE TEACHES MDS; he had it done on him; took him YEARS to get it out of his system; so just passing along this valuable info along.
i had my dentist put it in RED in my files NOT to use it EVER!!
best wishes to you all.
bettyg, iowa activist
- January 30, 2016 at 7:23 pm
It is extremely difficult to find a good dentist. I listened to 35 videos on a dental summit and learned guidelines. Not all those dentists on those videos follow this list, but these principals are brought up over and over by many.
A really good dentist should:
o Never use epinephrine
o Have and use a microscope
o Not clean you teeth, especially the deep cleaning if you
have an oral pathogens. (Rules out most dentists, they can’t
be bothered. They want you in/out and make a lot of money.) I would say
testing for pathogens should be added, at the very least, offered to
the patient before any cleaning ever. And if you realize you have
something wrong, or yellow teeth, then testing should be mandatory.
o Use rubber dams when removing amalgam with other protection.
o Never, ever, ever, use amalgam filings
o Never do implants, except for someone in an accident where
there is no chance the injured tooth had any infection as an only
o Use vitamin C IV for any procedure, especially surgery of any kind
o Never do root canals, ever, ever, ever
o o o …
o More could be added to this list, but this is a very good start.
More can be added to the list, but if you if find a dentist with a good amount on that list, you are doing pretty well. You can protect yourself ad your family by following this list and not allowing amalgams, cleaning if you are having oral symptoms yourself. LLMDs need a list like this to give their patients. Yes, it is expensive. But if you are a parent and start out with this list, your children should bless you until he day you die. Teach children this list.
I wish I had this list when I was young.
- January 26, 2016 at 9:58 pm
sandy, thank you for your detailed story above of being bitten early in your life after getting your degrees, starting work, and getting married.
gmd, interesting comments again emphasizing the DENTAL aspects of tick-borne diseases.
bettyg, iowa activist
47 yrs. chronic lyme
35 yrs. MISDIAGNOSED by 40-50 drs.
- January 30, 2016 at 9:55 am
Hello, Thanks for your comments and the question on dental. I have had many, many dental problems that continue. I just had a failed root canal and a tooth extraction about a week ago. Last year I had four root canals. With dental insurance not being very comprehensive for coverage, I find myself not in a position now to afford the additional testing. II had degenerative disc disease starting in my early 30’s and a fusion by age 42. My understanding is that once the arthritis process began, it continued. i have been told I have the spine of a 90 year old by several doctors. So I assume teeth, as bones, were prone to the same type of deterioration. I’m not sure if my comments are helpful, but many people I speak to who were of similar age when I was diagnosed have spine and teeth problems beginning early just as mine did. I do believe more emphasis should be on the dental aspect of Lyme disease as I have not had a dentist react with any questions when I tell them my CNS Lyme history.–Sandy R.
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