Struggle with
Lyme Disease
Our family story took a new turn in 2005 and finallys explain the neurological problems suffered by the kids. When you read this story, you may think we're completely wacko; I am not a doctor, this is simply our story, our truth. Perhaps we can make a difference by sharing it. Every day I wonder how I can get our story out to families.
In June 2003, Spencer was diagnosed with Lyme Disease although we'd never seen the telltale Bull's Eye and rash. He was achy (we thought growing pains), circles under his eyes, just plain tired all the time. Treated with 3 weeks of antibiotics, as recommended by the CDC, we thought that was that. Knowing what I know now about the inaccuracies of Lyme Disease testing, I'm surprised the results were positive.
Throughout 2003 and 2004, Spencer spent a lot of days home from school, simply being tired, achy. Doctor repeatedly told us it was "just a virus." Then in January 2005, things got so bad that we had more bloodwork done. He had an active Mycoplasma infection. The doctor was reluctant to link this infection to Lyme Disease but I was not satisfied. Why is a 9 year old child so tired all the time? I got a copy of Spencer's lab work from 2003 which stated clearly that a positive/borderline ELISA test for lyme should be followed with a Western Blot test. It was never done, in fact, we were never told! We have now learned how unreliable the ELISA test. This taught me to always ask for a copy of my lab work.
It turns out that there is a lot of misinformation about Lyme Disease and other tick-borne illnesses. Only 30-40% of adults see the telltale "bull's eye rash", less than 10% of kids. The CDC recommends 3-4 weeks of antibiotics to kill the lyme spirochete; this doesn't work for everyone. Lyme is being compared to syphillis. There are at least 350 symptoms associated with lyme.
Many patients are misdiagnosed with other diseases: MS, Chronic Fatigue Syndrome, Fibromyalgia, lupus, Crohn's, etc.
To add to the sordidness of this tale, I became really sick in 1991 with a flu-like illness that never seemed to go away. I don't know whether lyme was dormant in my system until that time and this flu triggered it or if I suffered a recent tickbite. What I do know is that my life changed dramatically; there was life before and life after June 30, 1991. I suffered memory loss, problems with word retrieval, angry outbursts, unmitigating fatigue (would wake up after a full night-sleep and still be tired), didn't feel as sharp as I used to be, developed tendinitis, depression, gallstones, arthritis, gained a lot of weight. In 1996, I was diagnosed with Chronic Fatigue Syndrome/Neurally Mediated Hypotension. Doctors didn't take me seriously: "just lose some weight" -- the fact that I gained weight after I got sick because I could no longer exercise never entered their equations. Never had a tick bite, never had a rash. Now, doctors are finding that many patients initially diagnosed with CFS have, in fact, Lyme Disease.
Kurt and Spencer are both positive for Lyme, contracted in utero. Yes, if a mother is infected, she can pass it to her fetus. Joe is also positive. There is no "research" to confirm that lyme is sexually transmittable but the lyme bacteria has been found in semen; you do the math. Interestingly enough, most of the health problems Joe and I have had over the past 10-15 years -- knee problems, sinus-like headaches, ringing in the ears, numbness in extremities, memory loss, depression, gallstones, constant need to urinate, tendinitis -- can all be attributed to lyme. Joe was just diagnosed with babesia, another tick-borne illness, which may be the culprit for the headaches he's suffered from since he was a teenager. Doctors always told him it was sinuses/allergies. Scary, huh? We just thought we were getting old.
All the neurological problems exhibited by the kids -- sensory/auditory processing, processing in general, light/noise sensitivities, speech problems, visual problems, rages, coordination problems, hypotonia -- are also symptoms of Lyme Disease. As a matter of fact, all children born with Lyme Disease have low body tone/hypotonia. I always felt that a piece of the puzzle was missing. Why did their symptoms seem to get worse each year? Why did each year bring a new diagnosis? Shouldn't they have been improving given all the therapeutic intervention?
Sadly, Spencer's processing speed and short-term memory have decreased more than 50% between 2003 and 2005, according to an eminent neuropsychologist who specializes in lyme. It's scary how lyme impacts the brain. We don't know to what extent it is reversible. Spencer's symptoms are worse and he's not recovering as quickly as Kurt because Spencer has a genetic marker; he's HLA-DR2 positive, which makes him predisposed to auto-immune disorders. But we know we're in good hands with Dr Jones.
Two+ years into lyme treatment, my kids are showing remarkable improvements. They used to complain that their hands got tired when writing; not anymore! As a matter of fact, Kurt has become a prolific writer and artist! Their hands tired because THEIR JOINTS HURT! Spencer no longer is fidgety, no longer clumsy, no longer forgetful. He no longer has uncontrollable, destructive rages. Even his speech is improving! Honestly, we see improvements almost daily. Kurt no longer sweats profusely at night, something that always puzzled me. He's in a special program for gifted/learning disabled children in his school district; at his most recent annual review, the teachers told me that his learning disabilities are no longer evident. He earns As, no longer struggles with homework, has such an amazing recall ability that he doesn't even need to study for tests! And this is a kid who really really struggled with academics through 4th grade.
Unfortunately, when the weather gets cold, Spencer suffers numerous relapses. Coincidentally, my symptoms also deteriorate during this time. Luckily, Spencer's doctor was always on the ball and switched his medications as needed. I just wonder if he'll have to worry about poor health every winter.
Spencer shared something very interesting with me. He came out of the bathroom and said "I hate that!" I asked him what he meant. After he urinates, he feels like he still needs to pee. As a kid, he didn't know anything else, he didn't know that this feeling was not normal. I, too, constantly feel like I need to pee and even get up several times at night. However, when my treatment was working well, this feeling went away and my lyme doctor confirmed that the constant need to urinate is a common symptom of lyme. And I thought it was simply a consequence of giving birth!
How many other kids being diagnosed with neurological disabilities are, in fact, infected with Lyme Disease or other tick-borne illnesses? At our most recent visit with Dr Jones, he told me that he is seeing more and more children diagnosed with autism; turns out, they have lyme and with proper treatment, their autism symptoms are going away!
It is now 2008 and the children continue to make amazing progress. Their low tone is just about gone; both boys have commented how bike riding is so much easier now and they really enjoy it.
Unfortunately, since I have had Lyme for so long, it's impacted many of my organs. Luckily, I found an alternative medicine doctor who has helped me tremendously. He diagnosed and treated adrenal fatigue. He diagnosed and treated Wilson's Thyroid Syndrome. Year after year, doctors would test my thyroid but the results were always negative. Turns out that this regular bloodwork for thyroid does not measure how the thyroid hormone is processed by your body, which happened to be my problem. He diagnosed and treated hypercoagulation. He diagnosed and treated two other tick-borne illnesses -- babesia and bartonella. Lyme seems to have settled in my knees; when I had knee surgery to remove cartilage on one knee in 1997, the surgeon commented that he'd never seen such damage in a person of my age (I was 34) -- my knee was that of someone 80 years old.
If after reading this story you want to get tested for Lyme or have your children tested, the following points are crucial:
- a lyme diagnosis must be clinical in nature, not just based on blood results because the testing is unreliable. Go to www.ILADS.org to get a symptom list and diagnotic guidelines for physicians. Doctors will ask if you remember a tick bite or a rash. If you answer "no," then they automatically won't even consider lyme.
- you need to see a Lyme Literate MD (LLMD). Find a local lyme support group through www.lymenet.com or www.lymeinfo.net and ask them for a referral. Doctors names are not posted online. Lymenet.com also has a flashnet group where you can request the name of a local doctor. Be prepared to travel long distances to find an LLMD! www.Oregonlyme.org has a referral system, too as does the www.lymediseaseassociation.org
- Contact Dr Charles Ray Jones in New Haven, CT. He is the leading pedatric lyme specialist in the country, having successfully treated over 8,000 in his career. He has trained other doctors so perhaps he can recommend someone closer to you or work with your pediatrician.
- if you simply go to your primary care physician and ask to be tested for lyme, he will most likely perform an ELISA test. This test is worthless. You need to get a Western Blot by Igenex, a lab in CA which specializes in tick-borne diseases (www.igenex.com). I can't reiterate this enough: you need to see a Lyme specialist.
- My husband and I had to take high doses of amoxicillin for a month before our lyme doctor would even test us because we've been sick for so long. The lyme spirochete burrows deep into the tissues and muscles and the antibiotics are used to coax it out into the bloodstream. Once again, you need to see a lyme specialist if you suspect that you may have a tick-borne illness.
- once the test results are back, get a copy. Go to www.wildernetwork.org/Understanding_Western_Blot.html to learn about the testing. A Lyme Literate MD knows that only 1 positive band can mean you have lyme.
- As a patient, you have to be very informed, proactive. We no longer live in a world where we can trust our doctors to do what is best for us. There is too much information and too little time. Do your research.
Please do not hesitate to contact me if you have any questions email me Nika at Nikastoys dot com
and check out www.ILADS.org, www.lymediseaseassociation.org and www.lymeinfo.net for comprehensive info on Lyme Disease.
