Bay Nature

There’s another reason that California has a supposedly “low” rate of Lyme disease. It’s because the CDC and state health officials have an unrealistically stringent standard of what is allowed to be counted as Lyme in this state. Every year, health officials discard more than 1000 positive Lyme cases, because they don’t meet the strict standard. (That more than 1000 people who are sick, had a positive Lyme test, and their doctor diagnosed them with Lyme–but their records are flushed from the system, never to be heard from again.)

great article
 

Hi Dorothy, 
That’s really interesting. Where did you get this info? It would be interesting to read more about it. 

I’m with LymeDisease.org (formerly the California Lyme Disease Association). We’ve been following the issue of under-reporting for years.  Email me at dleland@lymedisease.org if you’d like to pursue it.

FYI – as a joie de vivre Californian who got Lyme’s disease in the East, pay attention to the tick check.  They’re small and rat bastards, but don’t fully attach for two to hree days, so don’t be lazy and take care of yourselves. http://www.ncbi.nlm.nih.gov/pu…
“An ounce of prevention is worth a pound of cure.” – Franklin

Having learned for the first time from this article about the apparent imperviousness to Lyme that western fence lizards have, I wonder whether there could possibly be discovered a way to extract that bacteria and somehow produce from it a serum which would make humans immune as well. Whether that is already being researched further or if the idea has already been concluded as altogether sci-fi at this time, reading about this for the first time was more interesting than I had hoped and definitely counts for upholding my ‘learn something new every day’ addage. Thank you for the insight. I’ll also think twice before hiking through thorny underbrush off the beaten trail wearing sandals and shredded jeans.

I had one of the first cases of Lyme Disease diagnosed in Sonoma County, in 1987; I’d picked up the tick (I think) during a camping trip in Nevada County.  Symptoms included a raised, circular red rash, fever, and painful joints; I couldn’t turn my head. I was very lucky in that my Santa Rosa doctor had just attended a seminar on Lyme Disease, and offered to start me on antibiotics right away and not wait for the blood test results.  In a few days the fever was gone and I felt much better, but it took a couple of weeks for my hands and feet to stop hurting.  Interestingly, the test came back negative, but the doctor assured me that that was common and that I had had a classic case nonetheless.  Now I feel extra fortunate, because a friend in San Francisco, although exhibiting classic symptoms, was denied antibiotics until it was too late, and now, several years later, is still unable to work.  This is a nasty disease and one that deserves to be better understood–especially by the medical profession!

The reason so few cases are reported in CA is that the CDC 2 tiered test of an ELISA followed by a Western Blot used antigens from the B31 strain of Bb which is not the most common strain or species in CA. That results in many if not mostly false negatives in CA. That in turn means they don’t need to be reported so it appears to not be a problem. Until they change the test approach as was done in Europe, CA will have a hidden epidemic. Since Kaiser and most insurers support the CDC test, they gel false negatives and are happy because they have no cost. People don’t find out they have Lyme until they get tested at IGeneX or at Stony Brook or have a C6 peptide.

Canada adopted the US CDC 2 tiered test but are now discovering they too have different strains and species with some being carried by birds from Europe or Russia. The CDC is under pressure from the IDSA doctors who carefully chose their studies to NOT discover the testing fails. They do this by only allowing people with CDC positives to enter studies. Since they never look at false negatives, they see good results from the test but the studies are all flawed. There is a new culture from ALS that will eventually show this species strain problem. The IDSA hides behind bad science but claims its the authority. Bad science eventually gets discovered but its sad so many are suffering.

Could someone tell why the black legged tick is the only tick that carries lyme disease, if this is known?

Hi Sandra,
Good question! I’m assuming it has to do with the ability of the black-legged tick to serve as a vector. I found an interesting page on the topic, but I’m afraid it doesn’t address the core question of why this particular tick species. Does anybody else know?

I do believe that Lyme does exist here in California and right here in San Jose. I an being treated for it and a co infection. It kicked my ass and I’m thankful to have a wonderful doc who diagnosed me and is treating me successfully. Don’t discount how misdiagnosed theses little creatures can be and get second and third opinions. Unfortunately within the medical profession there is once again controversy among the drs about this disease.

Lyme Disease has changed my life and that of my family. I first contracted Lyme Disease in 1987 while hiking in the woods of Garin Park in Hayward.
Of course I did not know it was Lyme. I did have a Bulls eye bright red rash on the side of my knee and everyone who saw it asked : what bit you? Except for the nurse practioner at Kaiser, who treated me for poison oak since I had told her I was hiking. What followed was a year of constant illness, fevers, swollen lymph nodes, headaches, stiff necks and many visits to Kaiser hospital. I started to get a reputation as a hypochondriac.
The next year, I was barely able to function,getting very confused mentally, at one point I collapsed at work and had to be taken to Kaiser Hospital where ekg’s and other tests were taken. Then, during that same year my face was paralyzed. Kaiser treated me for bells palsy.
I was getting desperate. I had 2 businesses to run and I could no longer concentrate to even do my payroll.
Sometime after the second year, my daughter had been camping and attended a Ranger’s briefing where the subject was Lyme disease. She called me still from camp and told me : Mom, everything you have been ill with were described as signs of Lyme disease.
This was when I started my education about Lyme disease and approached my doctor at Kaiser with what I had learned. His first reaction would be repeated by many more doctors within Kaiser and also private doctors including specialists for infectious diseases.He did not believe Lyme existed on the West Coast. He did however order a lyme blood test which came back negative. One more try contacting the Health Department which led to nowhere.
I was giving up. Every now and then a doctor would prescribe an anti biotic for a week for some other health issues like a sore throat and I would start feeling better for a while.

Then the impossible happened. I ran into a woman who used to live in the neighborhood and had moved to Florida and she told me she comes back to the Bay Area every 6 months to see a doctor in San Francisco for this terrible illness she has and could not find another Doctor to treat her for. Somehow I knew she was talking about Lyme Disease. I had finally found a doctor , who said a clinical diagnosis based on all the symptoms should have been made a long time ago. They did a blood test right there in their lab which also came back negative, but he was not surprised. He also send a blood sample to a special lab in Palo Alto and it came back positive.
And so my treatment began with large Doses of Antibiotics for an extended time. When I started to feel better after a few months I asked my Doctor, a Rheumatologist, how much longer I would have to be on the medication, it was a financial concern since I had to pay all my doctor bills and medications plus lab work out of pocket. Kaiser would not pay for any of it. He told me he did not know, that some of his patients had gone off their medication and had severe re-lapses.
He also told me that he was in the last stages of colon cancer and for me to remember that not enough was known about Lyme, and if I were to get off the medication and start feeling sick again that I did have this disease.
In time my doctor did pass away, I did stop the medication and I forgot! Not what had happened, but to be on the lookout for the illness to come back. For a while all was well.
Then the worst 2 years of my life happened. My cognitive problems got worse. I could no longer pay my bills. Numbers were very confusing to me. I lost track of days and dates. I would get lost driving or come home with dents in my car and not remember why. So I became a shut in. I would want to take a quick shower and come out of the bath 2 hours later. I had encephalitis. I was again making the rounds for a doctor and could not find one who was knowledgeable about Lyme disease. Especially chronic Lyme disease. If you do find a doctor at all, at the most they will concede to Lyme disease with a cure of 30 days antibiotics. Even if treatment had been delayed for years. Some of my family got angry with me. They just did not understand how I could change that much. I lost my businesses, needless to say.
But it’s not over yet, 4 years ago, without any injury or discernible cause other than pain in my shoulders, an ER doctor diagnosed a paralyzed phrenic nerve, which in turn paralyzes half of my diaphragm and affects my breathing.
At a loss my doctor, who in the beginning had asked where at the East Coast I had lived to contact Lyme Disease, was willing to read not only my history, but all the Lyme literature I could find on line and which I would bring to him.
He then treated me with long term antibiotics and again I felt well for a long time.

Present day- Beeing a Senior Citizen and having pre- existing conditions, I am once again insured through Kaiser. My latest diagnoses is for RA , Rheumatoid Arthritis, an autoimmune disease, yet my Rheumo at Kaiser insists it has absolutely nothing to do with Lyme disease.

Why am I posting this long saga ?

A friend of my daughter, a young mother with a sweet little 4 year old girl, is asking for help.

Her daughter was bitten by what she believes is a tick. The little girl had the bulls eye rash.
But like so many people still, mom did not know anything about Lyme.
Then her Baby ended up in emergency with 105 F fever. They suspected Lyme disease. ( at least that much ) and treated her with a short treatment of antibiotics. ( I think 1 week )
The Lyme test came back negative. I don’t know which lab.

But now the little girl is back in Emergency again , once again with a very high fever. The help she needs is , information ….. any information as to a pediatric Lyme specialist, or any internist or Rheumatologist. Any information about which labs have experience in Lyme tests. I have forgotten some of the information I used to have , yes I gave up, I’m no longer up to date in research, besides …. there may be new doctors out there….
So please …. if you have information , please post here , I can not imagine a little girl having to go thru some of what I have described above.

Thank you.

So sorry to hear of you struggles, Siri, and those of your young friend. We’re a general nature website, so we don’t have a lot of background on Lyme disease, to say the least. There’s is a California Lyme disease group with a lot of resources. You could try contacting them here: http://lymedisease.org/contact.html. They also have lots of resources on their website, including downloadable PDF reports and other documents. Good luck in your quest for more information.

Just curious is anyone knows which color ticks are most and least attracted to? I know that wearing a white and light beige pants ad other clothing will allow to see ticks better. But I think it is also the light colors that attract ticks the most. Anyone knows?

Siri, I feel your grief – both for yourself and for your friend’s little girl. My husband and I unknowingly have had Lyme and multiple co-infections for at least eight years. Confused and trying to rule things out, my doctor ordered a Lyme test. To her surprise I tested positive and was given the typical 30-day dose of Doxycycline. Like you and so many others, I dug and dug for more information and resources (lymedisease.org is great) as my symptoms worsened. I finally found an incredible and compassionate doctor at Hill Park Medical Center in Petaluma. Nine months, six different antibiotics, various pain meds, and a whole slew of support supplements later, I’m finally starting to feel like a whole person again (my doctor said it would take about a year to recover). Further, after numerous negative test results for Lyme, my husband is also finally getting the treatment he has needed for so long.

The downside…treatment is expensive (and long). Treatment for Lyme Disease (and co-infections…you never seem to just have Lyme) really needs be under the care of a specialist because these infections put the body under such duress that nearly every system in the body is affected. This also means any pre-existing conditions or imbalances are worsened, and even any previously unknown genetic mutations (particularly ones connected to the immune system) come into play. Uncovering individual issues related to (and unrelated to) Lyme and co-infections takes time to unravel, and it can often mean thinking outside of the box so having a supportive, knowledgeable doctor makes a world of difference.

With regards to your friend’s dilemma with her daughter, a good Naturapathic Physician (some are also MDs) are usually more willing and able to order a panel of tests to check on things like White Blood Cell count, liver enzymes, hormone levels, signs of deficiencies, common immune-related genetic mutations, possible mercury/lead poisoning, etc.,.. This can at least give the mom a sense of some of what’s going on so she can begin a support treatment. A huge part of recovery from Lyme and co-infections is nutrition and supplementation – getting enough of what your own individual body needs to have the strength and balance to fight these infections. These tests also will indicate if it does look like a chronic infection is taking place, and if those indicators are present, keep getting tested for Lyme and co-infections. My husband finally had to have a culture done after receiving many negative Western Blot tests – it’s expensive but it finally validated that Lyme was present. Additionally I would say, have your friend look into homeopathy and possible diet amendments (ex: juicing is incredible, and going gluten-free/dairy-free is commonly helpful for those who have Lyme). Finally note that Doxycycline can cause permanent yellowing or graying of the teeth in children younger than 8 years old so if your friend’s daughter does have Lyme, alternative antibiotics will have to be explored.

All the best to you, please know you’re not alone. My hope everyday is for greater Lyme awareness and funding for better testing/research. This is such a crippling disease made more difficult by a medical community at large that is poorly informed on how to approach, diagnose and treat this disease.

David, to my knowledge ticks that carry Lyme Disease actually don’t have eyes, so they don’t care what color clothing you wear. It’s good to wear light-colored clothing so you can easily see a tick before it bites you. Deer ticks that carry Lyme are about the size of a sesame seed with black legs.

Thanks for the helpful comments, Susan!

I am a little concerned here in Berkeley Albany since a family of deer live next door in the backyard and sometimes come into my yard. Could they harbor the lyme tick and expose us? and if so, what are the best ways to avoid exposure? I garden near where they sometimes sleep. Thanks.

Tim, it’s likely the deer carry ticks. Not all the ticks may carry Lyme Disease, but the ticks also carry other nasty pathogens that can turn into problematic infections. Some tick-borne infections prominent in Northern California are Anaplasmosis, 364D Rickettsiosis, Tickborne relapsing fever (TBRF), Babesiosis and Bartonella.

For this reason it’s probably a good idea to try and keep the deer out of your yard. Keep grasses trimmed and avoid walking through tall grasses. Wear light-colored clothing when you garden and boots if possible. Shower after doing yard work. Finally, familiarize yourself with early symptoms of Lyme Disease/tick-borne co-infections.