Lyme Disease

Related Page: Advice about Ticks

Parent Q&A

  • Seeking Lyme disease specialist

    (1 reply)

    hi, 

    i may have Lyme disease and want a doctor who specializes in this. Do you have any recommendations, not Kaiser? I live in Lafayette, but will go anywhere.

    thanks

    Todd Maderis in Larkspur,  Marin County -his whole practice is diagnosing and treating Lyme.

Archived Q&A and Reviews


Questions

Reality check: tick bite(s) on Hawaii vacation

Jan 2008

On the last day of our Hawaiian vacation a week before Christmas, I saw a medium-sized tick moving on my 2.5yo daughter's arm. The next day, she had a bull's eye rash, so I took a picture of it and called her doctor. He prescribed Amoxicillin for 10 days, but she fought taking it and would not cooperate. This coincided with the biggest tantrums of her life, very unlike her! I didn't notice a fever, but she's been sleeping in a lot. After four days of downing some but not all of the liquid, he had us discontinue, wait a day and then gave her 10 days in pills. Luckily I found a yogurt-type drink Yakult that she would take, and we made a chart, encouraged her, and successfully administered the stuff for 10 days. Her tantrums continued and escalated and now are tapering off a bit (I hope), and her sleeping in has continued.

My concern for our daughter is, is the 10-day course sufficient to prevent/stop the disease? I've read that 14 even 21 days for a child is commonly prescribed. (Apparently this is controversial). I read that 10 to 14 days can be sufficient, which makes me wish he had prescribed 14 days just to be safe! I also feel like I gave the doctor misinformation that the tick couldn't have been on her for more than 12 hours, now that I know they can be incredibly small like a mole. We were in a rustic home with screens only, and I've read that the area we stayed in is 'the center of tickdom,' per a resident's blog.

On another front, my incredibly stubborn ''I don't need a doctor'' Dutch husband just had a huge week-plus long virus with nausea, the runs, the works, and I feel he should get checked as well. He totally refuses, and though he was sick for a week insists he had food poisoning (hello?) or that it was the stomach flu. (Some encouragement for him would be nice!) Finally, this has been an eye opener for me, as I had a tick bite years back that got the ring briefly for a few days. (I had no knowledge about lyme at the time). I don't remember the flu but is it possible to not get the 'flu-like illness' fever/Bell's palsy, etc. but still have longterm effects? Does anyone know about this? (I do have a lot of the longterm symptoms, including a newer sensitivity to light and alcohol, sleep difficulties, increased motion sickness and oh yeah, anxiety). I've been attributing these things to having a child and saying that my body changed in random ways and is so much more sensitive now. I'd like to hear from people's experiences for a reality check here and if possible get an updated referral for my family. I'm not sure how I would go about personally getting checked, as it wouldn't likely be covered, and I'd like to avoid super-expensive tests/treatment. Thanks! worried mom


Hi Maybe get a lab test to confirm the Lyme is gone? Untreated Lyme disease is serious, tho antibiotics usually kill it (see http://www.nlm.nih.gov/medlineplus/lymedisease.html). Don't fool around. Make sure it's gone! michael


Lyme's disease is incredibly serious. I would call back your daughter's Pediatriacian and have him/her refer you to a specialist for it. I don't think ten days is sufficient treatment. And if not caught early, it can be terrible. I also think your Dutch husband and you should take antibiotics. You should also talk to a specialist. This is not a disease to take lightly, or be macho about. My sister-in-law and her two sisters all got the disease, none knew about it (no rashes etc) One got treatment early, one thought she had MS, and one is on lifetime antibiotics. I think because they didn't know they had it, it took a year on antibiotics for two that were less effected. Talk to a specialist!


Hi Worried Mom, First thing is not to worry too much since when lyme disease is caught early and treated, kids recover well. That said, 10 days of amoxicillan does not sound like a long enough course of antibiotics, so I would recommend following up with a doctor who has more experience in treating lyme. The best Lyme doctor in the area is Raphael Stricker in SF. Another good resouce for info is East Bay L.E.A.P.S. (Lyme Education And Patient Support) Next meeting: Tuesday, January 22, 2008 6:30 - 8:00 PM Alta-Bates Summit Medical Center ''CC'' Conference Room 2001 Dwight Way Berkeley, CA 94704

I have amassed a huge amount of information about Lyme disease. (two years ago, my then 1-year old was bit by a tick in Marin & got lyme; my husband has been treated for it too) Pamela


Dear concerned mother, You are rightfully concerned about the potential of Lyme disease in your family. I have chronic Lyme disease and have researched the subject for many years. Know that Lyme literate physicians and health care practitioners have had success in treating Lyme--but it does not get better on its own and can lead to very debilitating symptoms, especially in children. A few pieces of info to keep in mind: Lyme disease is a clinical diagnosis. Testing can be helpful, but there is no test that can actually measure the spirochetes (Lyme bacteria) in the body. Most Lyme disease tests are notoriously inaccurate; you need to The CD57 test can give you a general idea of how long Lyme has been in your system, but the lymphocyte count will not be depleted if you have just recently contracted Lyme (i.e. this test could be useful for you but not your child right now). Having a bulls-eye rash is actually the most accurate measure of the Lyme spirochetes entering the bloodstream (and it is notable that about 2/3 of people don't even get or notice a rash). Ten to fourteen days of antibiotics is NOT sufficient for your child. Unfortunately, many medical professionals are grossly uninformed about Lyme disease. Your child (and you, and your husband) need to see a Lyme literate physician as soon as possible. I see Wayne Anderson (a naturopath and physician's assistant) at Gordon Medical in Santa Rosa. Dr. Anderson specializes in treating Lyme disease and is very well respected in the field. He is extraordinarily knowledgeable and compassionate--I cannot recommend him highly enough. I have successfully managed my Lyme through working with him. If you would like to see someone closer to the East Bay, ask Gordon Medical for a referral. There are other Lyme literate physicians in the Bay area.

Fyi, there is also considerable controversy about how to treat chronic Lyme disease. Antibiotics can be successful when administered immediately, but you need to administer and adequate course AND continue to be monitered by a Lyme literate physician who can intervene if symptoms begin to occur, or reoccur. Some people who suffer from chronic Lyme manage the infection through the use of long-term antibiotics (long-term as in years). I have been able to treat the Lyme and its coinfections naturally and have had success, but I would never attempt this without the guidance of someone who has treated many individuals with Lyme. The Lyme spirochete is very intelligent and difficult to completely eradicate from the system if not treated right away. If I could only say one thing, I would implore you to treat this now so you and your child don't have to deal with its outfall later in time.

Best of luck to you and your family. I am not including my email address here, but please contact the BPN moderators if you would like to contact me directly. I would be happy to share more information about my healing process, resources, etc. been down that road and hope to spare you some suffering


I know it can be anxiety provoking to deal with tick bites - especially on your little girl. To alleviate some of your concern - it is not possible to contract Lyme disease from any tick in Hawaii. There are no tick species in Hawaii that are capable vectors of the Lyme disease bacteria. The tick that was found on your child was most likely a brown dog tick (Rhipicephalus sanguineus)- these ticks can be very abundant in many regions of Hawaii and readily crawl on (and bite) people. This tick does not transmit Lyme disease bacteria. If you saved the tick or remember what it looks like, describe it to your doctor. If it helps, see this fact sheet: http://hawaii.gov/health/about/family-child-health/contagious-disease/comm-disease/factsheet/cddlyme.htm

It it helps to alleviate any more concern, you were quick to find the tick before it bit her (so it could not transmit any tick-borne disease). Additionally, the rash you described is most likely a slight allergic reaction - the diagostic bullseye rash or ''Erythema migrans'' takes at least a few days to develop. Many folks develop a localized rash after tick bite as these arthropods are dirty and many people are slightly allergic to their bites.

I hope this information helps to calm your mind - it is really hard to find solid information on tick-borne diseases (the web is full of misinformation on this topic). Tick Expert


Friend's a Lyme survivor expert. She says: ''1st thing: bull's eye rash means she IS infected, no guessing or test needed 2 prove it. Take a pic if there/comes back. I think yr daughter had 1 bite. Usually rash doesn't show up as fast as u report & u r right: tick size=poppy seed. She needs aggressive treatment NOW & for longer term than what the CDC/yr MD says. 21 days of antibiotics does NOT cure most people. @ start of infection, chances of curing it r excellent, but standard CDC/IDSA treatmnt not enough. Go 2 www.ilads.org (by Lyme MD's). Dwnload Dr. Burrascano's Treatmnt Guidelines - he's THE MAN. Wish known this info when my kid got bit. She was misdiagnosed & thus chronically ill for 6 yrs. She was too sick 2 go 2 high schl. 16 mons. of daily IV antibiotics & a line into her heart; she's doing much better. Will she ever b free of Lyme? Don't know. Can refer u 2 Lyme MD's in Bay Area, bcuz u want 2 continue antibiotics. This is a VERY SERIOUS neurological infection & can impact her 4 the rest of her life if not handled correctly NOW. For u, the rash alone says u were infected & was untreated. Lyme presents differently in every body, but yr symptoms r all on the Lyme menu: anxiety/panic attcks, light sensitivity, motion sickness, etc - all neurological symptoms. u also experience some ''brain fog'', memory issues, headaches & even fibromyalgia/fatigue? Your stubborn hubby may have been infected as usual 1st sign is the ''flu.'' After the ''flu'' u r better but not well, & u nor yr MD don't tie symptoms back 2 Lyme. Attend 2 yr kid 1st & u will learn a lot to help u & perhaps yr hubby. There's so much u MUST know (including the unreliability of blood tests) so that u don't fall through the cracks & into misdiagnosis & under- treatment like we did.  jennifer 


Lyme disease -- alternative diagnosis and treatments

Dec 2006

I have Lyme disease and am wondering about other people's experience with the disease.

A little background about myself: A medical intuitive first told me I had Lyme, and it was confirmed in August through the CD57 test (my count was 80). The medical intuitive and CD57 count suggest that it's been in my system for at least a few years. I am 26 and otherwise pretty healthy, but I've had a lot of the usually symptoms of Lyme and coinfections--fatigue, nervous system craziness (this is the most intense for me), low immunity, achiness, depression, low body temp. I am seeing a naturopath & physician's assistant who has an integrative approach.

I've done quite a bit of reading and research about Lyme, and I'm inclined to focus mostly on ''natural'' treatment, but I'm open to pretty much anything...i.e. if you've been successful treating it with antibiotics, i'm curious about the details. I am particularly interested in hearing from people who've used the Jernigan protocal, infrared saunas, rife machines, cleansing, acupuncture, other herbs/supplements. Are there other bay area practitioners (east bay would be great!) that you recommend? Success with other supplements? Internet resources?

Any words of wisdom/healing stories are much appreciated. healing from Lyme!


Check out www.betterhealthguy.com This guy is a friend of a friend. He's been very sick from Lyme and has documented all sorts of stuff that he's tried, and has also documented all of the different tests that he's had. Good luck!

BTW, I'd do the antibiotics

-former parasite sufferer


I am all for alternative treatments, but by all means, get yourself to a traditional doctor i.e. a MD (not a physician's assistant). You need to be on traditional medicine in addition to any natural remedies. Lyme is a serious disease and you can die from it or suffer brain damage and paralysis. I would see a MD as soon as possible Concerned


IV Antibiotics Treatment for Lyme Disease

Oct 2006

We have a close friend who has struggled with Lyme Disease for over two years now. She has just begun a course of IV antibiotics, but hasn't found anyone to speak with who has done a similar course of treatment. I encouraged her to let me post a question to this community for her, and I really hope someone has experience with this and can take a moment to write her directly with some feedback. Her question is as follows: ''Has anyone heard of positive outcomes for treating Lyme Disease with IV Rosefin?'' Her docs are saying this protocol could last a year, but research indicates that 60 days will either do the trick or not. She could definitely benefit from other's expertise and personal experience. She's in her early fifties and has been quite debilitated by this. Thanks so much grateful friend


Hello! It's very nice of you to be helping out your friend with Lyme disease. Given that she is trying IV antibiotics, she must not be doing very well right now. (so sorry!) I'm also guessing because of the IV antibiotics that she has a ''lyme literate'' MD who has experience treating people with lyme disease. (good for her!) While I haven't been treated with IV antibiotics, I have met people with chronic lyme who have had considerable success with long-term IV antibiotic treatment. As a starting point, I would suggest checking out a lyme group that meets at the Albany library. (Send email to AlbanyHouse [at] aol.com for more info) Perhaps you could attend a meeting if your friend is not well enough to be able to attend.

Re: the research on long-term lyme treatment... When you write, ''Research indicates that 60 days will either do the trick or not,'' I believe this reasoning comes from a recent NIH study in which patients didn't improve after receiving 1 month of IV antibiotics followed by 2 months of oral antibiotics. There were significant problems with this study, however, and the results shouldn't be interpreted to mean that long-term IV antibiotics don't work. Some problems with the study and its conclusions:

1. Patients selected for the trial had undergone similar treatment in the past. Given a previous failure, it is not suprising that a doing the same thing again didn't work for these people. 2. One month of IV antibiotics isn't necessarily considered ''long-term'' if symptoms are severe. 3. The oral antibiotics were given at sub-theraputic dosages, so you wouldn't expect the additional two months of treatment to make any difference.

For a detailed criticism of the study, you can check out: http://www.ilads.org/position2.html

Chronic lyme can be tricky to treat, and no one protocol works for everyone. On top of this, treatment and research are political and controversial. The reality is that some people don't get better with IV antibiotic treatment, and some people do get better. Hopefully your friend's condition will improve. The very real risks of treatment need to be weighed against the severity of symptoms on a case-by-case basis.

Best of luck to your friend! Pamela C


My 5 year old son might have Lyme's disease

June 2006

Hi, My 5 year old son might have Lyme's disease. So far his only symptom is a large, red bulls-eye rash. Apparently the blood results, which are not in yet, may be inconclusive and he will be treated for it either way. Treatment is antibiotics for 3 1/2 weeks. I have heard many stories of people who have suffered from this disease since they were never treated originally for it. Does anyone know if symptoms may develop later in life (or earlier for that matter) despite catching it and being treated w/antibiotics? His Pediatrician says no, but curious if anyone has any personel experience. Any other advice about this condition? Julie


I've had two people close to me who had Lyme disease. My mother got it from a tick bite and was treated promptly with antibiotics. She said that she does occasionally experience some mild soreness where the bite was, but nothing more. Another close friend apparently had the disease for several years, and was misdiagnosed or told by doctors that they didn't know what was causing his symptoms -- severe muscle pain, fever, fatigue, and difficulty concentrating. Finally he got the proper diagnosis, and has been taking a cocktail of medications for the the last two years, but he has not been the same as he was before (still the terrible pain and fatigue). So the disease can be debilitating if not treated promptly. I think your son should be fine, even if he is diagnosed with the disease, as early treatment is key. I haven't heard of severe symptoms developing after early treatment. Maybe keep an eye on that particular part of his body, and keep yourself up to date on Lyme disease info as the years go by. This is really a disease that the medical community is still learning about. You are doing the right thing, I wish you and your son the best KC


Lyme Disease Specialist

Jan 2004

Does anyone know a good Lyme Disease specialist in the Bay Area (I live in Berkeley, but would be willing to go into the city)? I know this disorder is difficult to treat in the later stages and would like to see someone who has a lot of experience in treatment and diagnosis. Seeking the Best Care


Dr. Raphael Stricker in San Francisco treats Lyme. He does lots of tests and takes his time with patients. He is straightforward and realistic about the various issues, both medical and political, surrounding this debilitating disease. He sees evidence of potentially effective treatment with extended courses of oral antibiotics. Worth a try... Good luck. anon


Hi, I have a very dear friend who has been dealing with Lyme for several years and has lots of information. She recommends you vist www.lymenet.org if you haven't already. Here is her rundown of the local doctors.

''Dr. Raphael Stricker in SF is the preeminent physician in the Bay but new patients get put on a waiting list that will last for next 6-12 months. Get your name on it anyway cuz he's the best and meanwhile see someone else. 415-751-7997 or 415-399- 1035 (one of these numbers no longer works but don't know which) Dr. Steven Harris in Fairfield is the son of Nick Harris, founder of Igenix lab in Palo Alto. Steven Harris had lyme himself. This is my current doc. 707-428-4600. Dr. Christine Greene in Palo Alto (if you can't get in to any of the others...)"

Good luck!!! Dana


Toddler bitten by a tick that tested positive for Lyme

Aug 2001

My 21-month-old daughter was bit by a tick that tested positive for Lyme Disease. We think the tick was in her for less than a day. I would appreciate any advice on specialists or treatment for this disease. My daughter has had a fever, complained a little about joint pain, but never developed the "bulls-eye" rash that is commonly found with this. My daughter is a fighter when it comes to taking medicine. Any suggestions around that would be helpful too. Jennifer


Regarding Lyme's disease: without hesitation, get your daughter to her pediatrician and request that she be put on the 10-day antibiotic treatment as-soon-as-possible. I am just completing the treatment and also never developed the bull's eye rash, but developed the flu-like symptoms. If Lyme's disease is not treated in its early stages and the spyrochete passes into the brain, it becomes untreatable and can lead to heart problems, arthritis, seizures, and other problems throughout one's lifetime. Better to treat it now, with or without rash, than have a lifelong malady. We are Kaiser members and I saw my general practitioner, so I am sorry I can't recommend a specialist. However, your daughter's pediatrician should be able to recommend treatment or a specialist. If the tick tested positive, I would think treatment is definitely in order. Kim


Having just returned home from a hike in the Marin Headlands only to find a tick hitching a ride on our daughter, I called the Marin County Public Health Office at 415 499-7805. They were very helpful in providing information on lyme disease in general and the incidence of ticks in their area. I would recommend calling the county health office in any particular county for further information on the tick in that particular region or area. Based on this recent experience, I just picked up "Lyme Disease: How to avoid, detect and treat this dangerous tick-borne plague" by Ronald Hoffman, MD, at Whole Foods. In the section When is Treatment Recommended?, the author states, "If you have a clear diagnosis of Lyme disease, based on a bite from a tick known to be infected, on the typical rash, on a positive blood test, and on typical symptoms, antibiotic treatment should begin without further delay." Additionally, for any one else in this predicament, we sent our tick (in a little plastic baggie) to the Marin County Public Health Lab, 920 Grand Avenue, San Rafael, CA 94901, for analysis. The cost was $18.00 and fortunately, the tick tested negative, but it was money well spent for the reassurance. Deborah


Just reread your post -- the tick tested positive, but not the child (yet?). You know the most important thing which is not to treat this lightly. You will presumably watch your daughter and have her tested again in a couple of weeks? Treatment for my family members who have had Lyme disease was VERY strong antibiotics. Side effects are uncomfortable but better than continuing to have the disease. We have an uncle who actually died from a condition that was significantly and negatively impacted by Lyme Disease left undiagnosed for too long (he lived in Florida, so doctor did think to test for it...he had been visiting up north and was infected there). Please take this seriously, and good luck. Heather J


I would definitely treat your daughter with the full dose of antibiotics, I believe 21 days is normal for adults. I too had lymes years ago after being bitten by a tick, with fevers, joint pain, the rash, the whole nine yards. Don't underestimate the seriousness of this disease. I'm not a doctor but it sounds to me like she has the disease whether or not you saw a rash because she's got the symptoms. I don't like using antibiotics unless absolutely necessary, but in this case I wouldn't hesistate or delay. You can email me for more of my story, since I was successfully treated after almost 9 months of being given inadequate doses of antibiotics. Lyme is gone now from my body thank god. Good luck. Candace Byers was my angel during that time, she's a P.A. (Physiciian's Assistant ) who worked with Dr. David Teegarten at Berkeley Holistic Health Center. I don't know if she's stilla round. There is an organization dedicated to Lyme Disease prevention and treatment, you can find them online or elsewhere I'm sure with a little research. If your pediatrician doesn't take it seriously, I'd find someone who does. I had to go thru several docs myself until I was treated with the right and current "protocol". Miriam M