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lyme_mom

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Everything posted by lyme_mom

  1. You have a wonderful attitude! I'm sorry it has been so long. I agree that so much good can come out of an awful experience including connecting with the wonderful Moms on this forum who are moving heaven and earth to heal their kids. During the two plus years of lyme treatment it seemed like more of a nightmare than a blessing but now that we are well I definitely look at it as a blessing in many ways because of the people we met who healed us and the things we learned.
  2. Thanks for telling me! I had no idea. This new format takes some getting used to.
  3. I've been off line for a while b/c I stopped getting emails when the lyme forum merged with the PANDAS forum. I was very busy with a move and now I'm back online. We are doing really well post lyme but today I am posting a question that I also posted under the HPV vaccine thread regarding a friend's daughter who is very ill. She developed an auto immune condition that is attacking her kidneys. This developed a week after she received the second HPV shot of the series. The doctors tell her it has nothing to do with the vaccine and they want her to start on a chemo drug very soon. She has been on steroids and apparently it has stopped attacking the kidneys. Where should she go to get alternative treatments to healing her auto immune condition that does not involve chemo? She plans to see advice from integrative doctors. I told her latent infections, nutritional deficiencies, toxicities, musco skeletal imbalances, etc. could contribute to the stress on the body. We did not deal with auto immune conditions during our illness so I am not familiar with the tests they do for these things and the treatments. She is located in Northern California and any practitioners in that area who are good would be helpful. Thanks, Patty
  4. A friend's daughter became very ill a week after getting the second dose of this vaccine. She developed an auto immune condition that is attacking her kidneys and she is now on dialysis three times a week. The doctors say the auto immune condition has nothing to do with the vaccine (that she got the week before she got so sick) and they want to give her a chemo drug to fix the problem. They have already given her steroids. Do any of you have any advice for her. She is in Northern California and has not yet seen an integrative doctor but plans to. In particular there must be things that can calm the immune system instead of chemo. Some of you are experts on auto immunity and I'd appreciate any suggestions. Thanks, Patty
  5. This is amazing. We have recently suspected TMJ problems with my DD16. She has had teeth grinding /bruxism at night when she is sleeping since she first got molars. It is the kind that is so loud you can hear it down the hall. I've read recently that bruxism can cause TMJ injury and the TMJ injury can cause movement disorders but was unaware of the OCD aspect which is a very big symptom for her. She got braces when she was 12 and when they came off 2 1/2 years later the ortho gave her a combo mouth guard retainer to help protect her molars and her head tics started a couple months later. The vocal tics started a couple months after that. When putting on her retainers before bed she goes through exorcist type head movements with her arms flapping and legs hopping for up to 30 minutes and after a neurologist saw a video of it with her eyes rolling all the way back she ordered an MRI and EEG for seizures which were negative. She's had the OCD since she was very young and it is now tied in with her fear that if she doesn't wear the retainer mouth guard she'll wear her molars completely down so it is unfortunately a compulsive mandatory nightly ritual to put the retainer on. I've made an appointment with what appears to be a good TMJ dentist and will report back our findings. Maybe this should be a new post/thread? I recently read from MichaelTampa that the Lyme spirochetes love to eat joint tissue and TMJ is a joint. http://www.latitudes.org/forums/index.php?showtopic=18122&st=0&p=143970&hl=tmj&fromsearch=1entry143970 That would explain my DD16's bruxism at such an early age from her congenital Lyme taking up shop in her jaw joint. Though we have also suspected parasites but the tests including the $400 Metametrix GI Effects stool test came back negative. She has never had any jaw pain or molar pain, just the crazy molar grinding. After less than a year she shredded the molar parts of her plastic retainer mouthguards and the ortho cut the molar part off the bottom one and gave her a new big, thick rubber one for the top. I think that made things even worse. Adding a clarification about the word 'mouthguards'. My daughter's mouthguard is a full plastic retainer that looks exactly like custom made teeth bleaching trays that was intended to cover her molars to protect them from grinding as well as to prevent her teeth from shifting. I think the TMJ mouthguard that lymemom is referring to is an orthotic type device that is custom made by a TMJ dentist to correct/fix a problem with your TMJ. There's a lot of info from Drs Sims and Stack about this kind of device like in this article: http://www.tmjstack.com/casereport.pdf That's interesting.My dentist mentioned the connection between TMJ and movement disorders like tics and parkinson. I know someone whose child had tics suddenly at age 12 and he was helped to 95% by a chiropractor. I was wondering if the child had lyme too and he later turned out to have it. If these jaw problems stress the immune system it could go hand in hand with lyme b/c it would make a patient's immune system weaker. Yes I am talking about custom fitted clear plastic molded retainers also called splints or mandibular devices. They cost several thousand but insurance may cover part of it. Misalignment of the jaw or TMJ can wreak havoc on the body in terms of fatigue, pain, muscle tension, movement disorders and basically upset the autonomic nervous system making a person's immune system less strong. When orthos pull the jaw back or pull teeth they can really cause problems. Whether the jaw is the main cause or a contributor to illness varies from patient to patient but it is sure something worth checking out. You have heard of the bathtub effect -where it isn't one thing that makes a person sick but the sum total of things that causes the water to overflow the tub OR the straw that breaks the camel's already strained back. This is why holistic medicine is so important if you want to get or stay well. I started wearing one of these devices about 6 weeks ago. The reason I got one is because I had some intermittent lower jaw pain that this orthodontist explained was due to TMJ caused by my midline being off (upper and lower front teeth do not line up). I did not realize I had TMJ. This causes the muscles of the mouth to be pulled and they in turn pull the muscles of the neck and shoulder, all the way down the back and can cause pain anywhere in the body. I assume the effects go in both directions and upwards to the brain as well and may be how it affects some people. I started using this device about 6 weeks ago and it has been adjusted about 4 times, a necessary part of the treatment. The jaw pain went away within days. I got some new pains in my neck that I had not had before but they went away after the orthodontist adjusted the device. All he did was shave a tiny bit off this thing and my neck pain went away instantly. So wild. IF you have ever seen those old fashioned dolls with the rubber bands that hold the head on the doll it felt like one of those bands was too tight after wearing this device. So the ortho muscle tested me and shaved this device a little and the neck pulling went away immediately. It is amazing how shaving a little off this thing has such a HUGE effect. So it does not surprise me at all that the "fix" to your daughters device could make things worse. My neck pain is gone and I feel like the retainer really fits now. I have noticed another major benefit: My right shoulder seems to be relaxed now. My right shoulder would get really knotted periodically and chiropractors would help but it never lasted. My shoulder feels relaxed now after wearing this device so I am hoping this was the key to that problem. Pretty amazing. This should be good for lymphatic drainage too, a necessary thing for good breast health (but that is another thread). May be good to start a new thread on tmj and infection/symptoms.
  6. In a conversation yesterday that evolved from this post I realized that I should mention one other thing I recently learned about-the role that misalignment of the jaw can play with many disorders including OCD and tics. We recently switched from a regular orthodontist to a functional orthodontist who is excellent. He and other functional orthodontists are less interested in straight teeth and more interested in getting the jaw in the right position to support the body. A misalignment of the jaw can cause pain in other parts of the body, stress the autonomic nervous system (in muscle testing make you weak) AND i am learning cause tics and OCD. Another member and I got on this subject and she said that she had heard that many cases of tics are related to the jaw so I asked my functional orthodontist today and he said absolutely this can happen. Regular orthodontists can unknowingly make matters worse when they pull teeth and move the jaw in directions that do not support the face and body. The treatment for these jaw issues are mouthguards that may be covered by insurance. I have been wearing one now for a month and a half and I have noticed that my shoulder no longer gets tight anymore. All my kids are going to have this doctor do their "braces" even though he doesn't use braces per se. Something to think about and follow up on....
  7. Hi SF Mom, great to hear from you! Hope you are done soon too!
  8. I am so glad that it can give you hope! I'd be happy to elaborate. Grapefruit seed extract can kill yeast so have you explored a yeast problem? You may want to try some form of energetic testing. It can be very helpfiul in pointing you in a direction you may not have considered and throughout our lyme treatment we had chiros, acupuncturists, naturopaths, etc. who used energetic testing. It was usually very helpful. I learned about emfs from my biological dentist. All of this was foreign to me when my son got diagnosed. First of all I didn't even understand that you need to go to a holistic dentist until my mercury removal with a regular dentist caused me to be very ill. Up until then I wondered why a person needed a holistic dentist. It was the holistic dentist who told me about energetic testing. I mentioned that we were 18 months into my son's treatment and he was still very sick. He asked if I had tested our home for EMFs and I said i had no idea what he was talking about. I almost didnt want to know b/c it seems with lyme that it is one thing after another. He simplified it for me and lent me a meter to use for the weekend. It was a meter from a place in Canada and the device was called a BODY VOLTAGE METER. The device was expensive, about 350 dollars and it indicated that my son was sleeping in a very high emf location. This emf energy was invisible and in the wiring in the walls. First of all I turned the power off to the room and this lowered the levels to acceptable ranges. I got him a flashlight and left the power off. Later I got an electrician to install a switch that allowed us to turn the power off at night and turn it on when light was needed. I have since purchased an inexpensive meter that is not as comprehensive but a good start. You can buy it at less emf.com Its called a gauss meter and this is the description: "This little meter measures the level of ELF magnetic field radiation from power lines, computers, kitchen appliances, and more! The easy to read scale, unique built-in audio signal and auto shut-off make it simple to use and a great way to find hidden sources of ELF frequency magnetic fields." Less emf sells for thirty something. I got mine at radio shack. I have since discussed this testing with less emf and they recommended a second product too that also tests body levels of emf. It was less than 100 dollars so the combination of both meters is what you need to really know if there is something wrong. I plan to buy the second meter. We have the same problem in our new house and its in the same son's bedroom so we moved his bed to the other side of the room. Some really conscientious holistic practitioners turn the power off in their bedrooms at night. I still do not know enough about this technology but I believe it is critical to sleep in a place that is free of high emfs. My son was sleeping in a lyme incubator and we didnt know it. Lyme loves high frequency. As for the sauna, we bought a Healthmate sauna that is infrared and love it. Our dr had one. Its made in the us and wont off gas. If you want to get one email me and I can tell you more to get you a discount. INFRARED saunas do not get as hot and cause a deeper detox so they are more effective. You can actually read a book for the first 20 mins in an infrared sauna until you start sweating. Then you sweat from every pore in your body. Its a wooden closet that comes in various sizes, smells great with a wooden bench inside. It starts at 2500. Other tent style saunas are available for a lot less but wont last as long. Not only do they detox, they raise your temperature which lyme hates and burn 600 calories an hour just sitting in it. What part of the country do you live in? Hopefully its near a place that offers good options for holistic treatment and lyme treatment.
  9. I, too really appreciate this followup. We are also at our 2.5 year mark, and starting to work down the abx. We are still doing supplements, ART, chiropractics, and I have been doing accupuncture, too (both DS's said it didn't help them, but I actually had a period of feeling 100% for about 2 months until we got hit by an improperly remediated mold job...I'm back to doing the acupuncture.) When your LLMD told you that you were done, did you stop abx cold turkey, or did you ease down. Our LLMD (and I think it might be the same one) is having us eliminate one at a time, which makes me feel a little more secure. Also, did you and your children have anything else besides lyme? Did you have any other co-infections and/or viruses, other bacteria, etc? Congratulations on being so close to being done! We stopped treatment all at once as I recall. I think I stopped first and then my son stopped within six weeks. I was very nervous about doing that for my son as I am sure you all are. Its like post traumatic stress and you are afraid the lyme will come flooding back. Its natural after years of monitoring antibiotics every day and symptoms. I was afraid to post that we stopped then b/c I really did not want to post good news only to disappoint everyone if we were still sick. When we first started our lyme treatment I did not know anyone who had gotten rid of a bad case of lyme and it worried me when I read things that suggested you can never get rid of lyme. I later learned that Pamela Weintraub had gotten well and this gave me a lot of hope b/c we all know how sick she was if you have read her book Cure Unknown. In terms of diseases we were likely dealing with all three: lyme, bartonella and babesia but we will never know for sure. My son's lyme was announced when he developed Bell's Palsy in June 2008. He probably had it for at least six months to a year before this and so he was quite ill by the time the palsy developed. I got great advice the first week he was diagnosed and we were at a llmd within six days of his diagnosis. Nonetheless the palsy appeared to be spreading in spite of oral antibiotics and he was put on a picc line. Within a month headaches persisted even with a picc line so he was put on rifampin and this had an immediate positive effect. WIthin four months the palsy was gone and we had consulted with dr j in Connecticut. He told me it would take at least two years and that my son was very sick. He was right about both. We had a local llmd and saw dr j every 5 months. I think i probably had babesia for years and this causesd periodic fatigue that I mistook for the normal fatigue of a mother of three young kids and getting older. I also had some odd symptoms that I did not know were symptoms that years later I recognized as babesia symptoms (a week of intense air hunger and some sore ribs every once in a while). Mepron made me very sick and eventually helped me get well. I think we have been on every lyme/bart/babesia drug there is :-). My llmd told me that my herxing on mepron could have been lyme or babesia so who knows what it was. When I first got air hunger years earlier in 2004 a primary care doctor told me that I had asthma. I was in my early forties with no history of asthma and I suddenly had asthma according to this doctor. It made no sense to me and I did not take steroids as was recommended. The air hunger simply went away. Thats what they say about babesia-you can have it for years and not know it and then you get lyme or something else and you get very sick. Its great you have a chiropractor and acupuncturist. That will really help you stay well!
  10. It was my llmd who told me we were done. On a day to day basis I really don't get around to giving my kids supplements nor have I been very good at making sure they eat properly. I was good about this for awhile and was even making them green smoothies everyday for a while but we got so busy I couldnt keep it up. I used to try and limit gluten b/c it is healthier but that has gone out the window too. We are constantly coming and going to games and other activities so it is not possible to fixate on this like I used to when we were sick. I read labels and don't buy msg products etc so I am not clueless about diet but they eat typical food. We continue to utilize holistic practitioners mainly through ondamed treatments and chiropractic adjustments. Ondamed is a powerful biofeedback machine that is from Germany. It has been in this country for 12 years and tests the body to see what healing frequencies it needs. It delivers low frequency waves to the body based on what the machine determines is needed. It is used to help cancer patients and is even used to stop smoking. Two visits and you can be cured of smoking, but that is another subject. My son has had about 8 total ondamed treatments (and none in the past six months). I am sure that has been great for his health. We found this great chiropractor who told me that my son was very twisted from a myofacial level (actually we all were a little twisted) and she said this causes stress that could have contributed to his long illness. We saw this chiro about half a dozen times to get untwisted. He had a huge growth spurt after these adjustments, growing six inches in one year! ABout 2 years ago my son was bitten by a tick and had to take a few weeks of doxy. I was thrilled when he did not herx on this. Im not afraid of lyme anymore b/c I know you can get well if u get it.
  11. I haven't posted in a while because we have been well for so long that life is very busy with stuff that has nothing to do with illness or lyme. For those of you who are in the middle of this nightmare or just beginning it I want you to have hope that you can get beyond this and get well. We completed our treatment in August of 2010 and I didn't want to post an update then because I wanted to see how things went before posting. I must admit that I had trouble believing we were really done with lyme at the time. It has now been almost 2.5 years so I thought I should post an update that we are doing well and have not had symptoms or antibiotics since we completed treatment. We had a very hard time with lyme and my son and I were particularly sick with it but we had faith in our llmds and we got well. We were both treated for just over 2 years. At times it was unclear whether we were on the right track and even 18 months into my son's treatment he seemed as sick as ever. That was when I heard about emf testing and discovered that he was sleeping in a horrible location emf -wise, a virtual lyme incubator with high frequency all night long. Six months later his treatment was over and I don't know whether lowering the emfs helped but I think you need to address this with a very sick child, earlier rather than later. Think of healing as a wheel with many spokes. A number of things can cause stress on the body-emfs, musco-skeletal imbalances, energetic imbalances, food sensitivities, toxicities, nutritional deficiencies, etc. You will find plenty to read about food online but I also think it is worthwhile to find the best pediatric chiropractor or holistic chiropractor and be sure your child is balanced. Chakra balancing or reiki/healing touch are also very worthwhile. To beat lyme you need to help the immune system in every way you can. We also bought a sauna to use for detoxing heavy metals and other stuff- our llmd is an integrative doctor who looks at toxicities and nutritional deficiencies as well. We tested our home with a mold sniffing dog (no mold found fortunately). I have no way of knowing how much any of these things have helped but I think they definitely helped us stay well after completing our treatment. You need to be your own investigator and follow your mother/father instincts. It can be expensive but the right practitioner can make all the difference between staying sick or getting well and staying sick is very costly. Each case is a little different so what worked for us may not be exactly what another patient needs. Above all else you must believe you will be able to get rid of this and do not believe people who say you cannot get rid of lyme. How can someone get well if they believe they will be sick forever? The reason so many don't get rid of lyme is because most doctors have no idea how to properly treat it and the confections. What your mind believes is powerful medicine so think positively about getting well. Look at the lyme (bartonella, babesia,etc.) diagnosis as an opportunity to learn more about wellness and how to stay healthier in the future. I am so thankful to our llmds for having the courage to treat these diseases in spite of the personal risks they expose themselves to. They are real heroes. For all you parents sick with worry about your kids, I've been there, and I think you should make sure you take care of your own health too. After a while you don't even realize how much worry you are carrying. Get a reiki treatment, meditate, do yoga or some other relaxation modality so you can relax a little and stay well to take care of your child. Best of luck to you all and warm wishes, Lyme Mom.
  12. No doctor can know for sure whether or not your daughter has lyme so I would take that statement that she doesn't have lyme with a grain of salt. Whenever I hear someone say that their doctor says it "isn't lyme" or they "ruled out lyme" I know it is not a lyme literate doctor b/c they don't make such definitive statements. If a llmd says it probably isnt lyme then I would listen to that. All the tick borne disease tests are unreliable and all you can do is get to someone who treats lyme everyday (ideally a member of ILADAS who also has ongoing training in the diseases and how to treat them) and see what they think. The tests have not caught up with the diseases and I doubt they ever will. These bugs are morphing and the tests only test for a very small subset of the known strains of lyme, bartonella, babesia, etc. For example I think I had babesia but I have no test result showing that. I had the symptoms and my llmd determined I needed to try treating babesia. It worked and I went from being very sick to very well. It really doesn't matter as long as it works. Some lyme experts are relabeling lyme as multiple chronic infections. Much of lyme treatment is trial and error guesswork but the llmds have it down so that it is not that mysterious. Your lyme diagnosis and hiking history certainly make lyme a possibility and there is a simple way to test it....just try a trial treatment with a llmd and see what happens. Try to find a llmd who has a good reputation for getting people well. ILADS should be helpful in that regard. Good luck!
  13. Great book! She also has a similar styke book about all the ways you can treat cancer holistically. Very informative.
  14. We are seeing a naturopathic doctor who recommends five days of oregano oil (p73 at whole foods) to treat parasites. She says to take ten drops in water am/pm. It kills other stuff too and can cause a herx. She says she gives it to her kids a couple times a year to get rid of any parasites. Probably can't hurt.
  15. Itching can also be a sign of parasites. Just thought id mention it. I remember the feeling of not knowing if we wereoving forward or backward especially w tindamax, similar to flagyl. Hang in there it does get better. Make sure you check his room for high EMFs or turn the power off to his room. High frequency is not helpful for Lyme. We discovered that my sons bed was off the charts 18 months into treatment. Wish I had known earlier.
  16. It should b temporary. I had stains but when I finished my treatment my dental hygienist said my teeth looked great, very little plaque. My kids had it too.it's the antibiotics that upset thatbdo it.u have to go to dentist more often but I skip flouride. Don't need extra toxins when sick.
  17. Thank you, I was not familiar with these but just looked them up. If you have used them do you know how long it took for the mice to get all the cotton out? I think I would have to keep the backyard off limits while they were out, my DD is a little explorer I have seen organic tick control advertised but this is certainly more economical. More evidence that the tick population is exploding due to more mice, I have never had anything like this before. I use granulated castor oil and it works well to get rid if the tunneling rodents. They hate the smell. Bought it at a farm supply store.I also use tick tubes -you can hide them where the kids won't find them but mice will like under rocks, in stone walls etc. we also have natural lawn spray the yard. You can do it yourself too w garlic mixture (mosquito barrier.com) but it is time consuming because u must use a hand held mister- the thing u use to spray a deck w stain.
  18. I would bet that the Deseret Borellia series is causing the immune system to go after lyme it did not recognize before. That's how it works apparently. So I would think it is a good thing. About four months ago we began experimenting with this remedy. My son who was treated for lyme successfully I thought (for two years) started to develop some symptoms that might have been lyme. He didn't do well on tests he should have done well on and he said one side of his face felt numb (where he had had bells palsy in 2006 due to lyme/bartonella). My llmd ordered doxy but my son is a real difficult patient and doesn't always eat breakfast so I wanted to have him tested energetically before undertaking doxy again. This nutritionist I use has a biofeedback machine that can test for lyme and infections. I figured I would see if she agreed that he still has lyme. She said he still has lyme in a stealth mode-it is evading the immune system. She tested which remedy would b best for him (including doxy). The machine said the homeopathic remedy from deseret is what he needed. I figured we can always start doxy but I would try this remedy first. You only have to give him a vial every three days under the tongue and there is no danger of killing gut flora (NICE). Anyway I wasn't sure it would work but thought we should try it. Pretty soon after he started bringing home A's in algebra, physics, other hard subjects. I asked what caused his improvement and he guessed it was the remedy (said he wasn't working any harder :-). So I had the test done on me and it brought up lyme and babesia (which I was treated for successfully before). I haven't had a symptom of lyme in two years but I am doing the treatment anyway and I think I am herxing. Its not bad but I feel a little achey and have sore muscles now and then. One day I felt down right awful. You do this series for two months and then you get on a maintenance thing once a week according to my nutritionist. Different energetic testing showed parasites are an issue so my son is doing that treatment now. I think parasites are likely a big factor in lyme based on thing i have read and people i have talked to. It may be why he still had some lyme. If the Deseret stuff works the benefit is that it teaches the immune system to recognize the lyme bacteria so it can fight it. Seems like that would be helpful in the long run. I am not against antibiotics at all b/c they saved us but I am intrigued by this homeopathic treatment that appears to be quite powerful. Its 48 dollars a box and you need two boxes.
  19. Years ago our llmd told me that it can take up to 8 weeks for antibodies to develop.
  20. Yeah...I found the stick at REI. I'll use it on myself and non-pandas dd (mosquitos love us) when we are in buggy areas (travel/camping). I agree with you about not having a child apply deet (without a parent to supervise or do it). Also, I cannot be sure that she will take daily showers! You may find this interesting from http://forums.dpreview.com/forums/read.asp?forum=1029&message=28191009 Permethrin has an excito-repelllent effect and is also a toxicant. Thus it can repel but also kill the insect. Yes Permethrin can be broken down quickly in the body but some people can develop allergic skin irritation when in contact with the chemical; if this happens, stop using it. Permethrin comes in various forms but it can be purchased in most countries from outdoor stores where it is often sold for impregnating mosquito bed nets. Some countries have Permethrin in spray tins; Permanone is the US was one such product. In South Africa they have another synthetic pyrethroid, flumethrin, available in an aerosol. I have used this product in Australia while undertaking tick risk assessments and have never recieved a tick bite! Without repellents I have had to remove more than 300 larval ticks from myself. In terms of repellents my recommendations are to use either a DEET or Picaridin product on the skin; it is better to use creams rather than sprays as they can be more thickly applied. You can use DEET/Picaridin sprays on the clothing but be aware thatN DEET can damage nylon based fabrics. Otherwise wash the clothes in permethrin and reapply every 3 or so uses. As to DEET vs Picaridin. DEET has been around for quite some time and when applied according to the label instructions is safe and effective. Tests in our laboratory against mosquitoes have shown that the higher concentrations of DEET provide a longer duration of protection but not greater protection. This means the lower % DEET formulations need to be reapplied, usually at least every two hours. Picaridin was developed in Germany by Bayer as an alternative to DEET. Picaridin has less smell, feels better to put on and has lower mammalian toxicity than DEET, in fact Picaridin is every approved for use on children under 12 months in Europe. If using Picaridin go for the 19% formulation, the 9% was not very effective in trials against ticks. Kind regards Stephen We have some experience in this area as my teenage sons have gone on camping trips post lyme disease. I consulted a naturopath who advised that they take astralagus, samento and another one I can't remember that starts with a B that is also a liquid that you drop in water (I will try and remember) before during and after the trip. This naturopath also advised sending a supply of doxy with him should he get a tick bite (interesting that even a dr who doesn't usually use antibiotics wants you to take doxy immediately following a tickbite). My llmd gave me the doxy prescription and I sent it. My son got a tickbite the first day and started doxy. The next day they went on a 6 hour canoe ride and he got burned. When he returned my llmd put him on ceftin b/c of the sun issue. We saved the tick and I sent it to Igenex for the triple testing (Bart, Bab, Borellia) and it was negative. What a hassle it was so I am not too keen on camping. I did not use promethrin or deet (I have read contradictory things about deet). I sent him with natural repellents, the wrist bands that have citronella (quite sure he did not use them :-). I would probably do what you all advise next time with the clothing. I just worry about exposure to these chemicals like deet and promethrin b/c it doesn't help the immune system s I would be very cautious with them. My other son went camping recently and also got a tickbite the first day and went on doxy. Luckily sun wasn't an issue b/c it rained everyday for his trip :-). Not too many great choices but I would send doxy or ceftin in case of a tickbite. Not sure if it matters if you double the dose of azithromycin. I'd ask the llmd if you can. Oh and Dr Kenneth Singleton who wrote the book The Lyme Disease Solution says that deet may attract ticks. He recommends the avon products and says the us military uses them. I also bought some long underwear type clothing that is called body armor or something like that which is made for hunters. It is a tight fitting long sleeved top and leggings that the insects cannot bite through. Again not sure if the kids used it. Tell the camp to save the tick for you. I'm amazed that schools do not do in every case. I am the only parent who sent doxy as far as I know. After the last camping trip where my son got bitten two students developed lyme within six weeks of the camp. Your friend's daughter might be helped by energetic testing to speed up the diagnosis. We have done a lot of that here and its very reliable. We have someone who uses an Assyra machine that can test for lyme and coinfections plus test which remedy or antibiotic works best. She will test for all lyme infections for 99 (includes a 30 minute phone call to go over results). My llmd says that 9 out of 10 times the machine is correct when diagnosing lyme. He gets a lot of the patients who test positive. PM me if you want her name. You just send a saliva sample so no need to travel. Ok A week before camping the naturopathic doctor advised starting my son on Samento and Banderol (start slow and work up to 20 drops twice a day) plus one Lyme plus and 2 astralagus twice a day. He weighed about 110 at the time. My llmd later told me 20 drops a day is the adult dose of Samento but we used the higher dose w no issue. Also I can buy lice shampoo at whole foods (desert something or other) which is apparently excellent for tick prevention. Or you can send peppermint or lavender soap/ shampoo. I sent the natural pepperimint oil liquid soap for use as shampoo and soap. Of course they got tick bites anyway. I'd rather they not go. My son and I developed Lyme after a school camping trip in 2006. In my experience w two schools and their outdoor Ed programs I think most are clueless about the risks of Lyme especially the Gung Ho camping faculty and parents. We learned about it the hard way. Until outdoor Ed programs get smart about Lyme prevention many kids are going to develop Lyme plus unnecessarily.
  21. Yeah...I found the stick at REI. I'll use it on myself and non-pandas dd (mosquitos love us) when we are in buggy areas (travel/camping). I agree with you about not having a child apply deet (without a parent to supervise or do it). Also, I cannot be sure that she will take daily showers! You may find this interesting from http://forums.dpreview.com/forums/read.asp?forum=1029&message=28191009 Permethrin has an excito-repelllent effect and is also a toxicant. Thus it can repel but also kill the insect. Yes Permethrin can be broken down quickly in the body but some people can develop allergic skin irritation when in contact with the chemical; if this happens, stop using it. Permethrin comes in various forms but it can be purchased in most countries from outdoor stores where it is often sold for impregnating mosquito bed nets. Some countries have Permethrin in spray tins; Permanone is the US was one such product. In South Africa they have another synthetic pyrethroid, flumethrin, available in an aerosol. I have used this product in Australia while undertaking tick risk assessments and have never recieved a tick bite! Without repellents I have had to remove more than 300 larval ticks from myself. In terms of repellents my recommendations are to use either a DEET or Picaridin product on the skin; it is better to use creams rather than sprays as they can be more thickly applied. You can use DEET/Picaridin sprays on the clothing but be aware that DEET can damage nylon based fabrics. Otherwise wash the clothes in permethrin and reapply every 3 or so uses. As to DEET vs Picaridin. DEET has been around for quite some time and when applied according to the label instructions is safe and effective. Tests in our laboratory against mosquitoes have shown that the higher concentrations of DEET provide a longer duration of protection but not greater protection. This means the lower % DEET formulations need to be reapplied, usually at least every two hours. Picaridin was developed in Germany by Bayer as an alternative to DEET. Picaridin has less smell, feels better to put on and has lower mammalian toxicity than DEET, in fact Picaridin is every approved for use on children under 12 months in Europe. If using Picaridin go for the 19% formulation, the 9% was not very effective in trials against ticks. Kind regards Stephen We have some experience in this area as my teenage sons have gone on camping trips post lyme disease. I consulted a naturopath who advised that they take astralagus, samento and another one I can't remember that starts with a B that is also a liquid that you drop in water (I will try and remember) before during and after the trip. This naturopath also advised sending a supply of doxy with him should he get a tick bite (interesting that even a dr who doesn't usually use antibiotics wants you to take doxy immediately following a tickbite). My llmd gave me the doxy prescription and I sent it. My son got a tickbite the first day and started doxy. The next day they went on a 6 hour canoe ride and he got burned. When he returned my llmd put him on ceftin b/c of the sun issue. We saved the tick and I sent it to Igenex for the triple testing (Bart, Bab, Borellia) and it was negative. What a hassle it was so I am not too keen on camping. I did not use promethrin or deet (I have read contradictory things about deet). I sent him with natural repellents, the wrist bands that have citronella (quite sure he did not use them :-). I would probably do what you all advise next time with the clothing. I just worry about exposure to these chemicals like deet and promethrin b/c it doesn't help the immune system s I would be very cautious with them. My other son went camping recently and also got a tickbite the first day and went on doxy. Luckily sun wasn't an issue b/c it rained everyday for his trip :-). Not too many great choices but I would send doxy or ceftin in case of a tickbite. Not sure if it matters if you double the dose of azithromycin. I'd ask the llmd if you can. Oh and Dr Kenneth Singleton who wrote the book The Lyme Disease Solution says that deet may attract ticks. He recommends the avon products and says the us military uses them. I also bought some long underwear type clothing that is called body armor or something like that which is made for hunters. It is a tight fitting long sleeved top and leggings that the insects cannot bite through. Again not sure if the kids used it. Tell the camp to save the tick for you. I'm amazed that schools do not do in every case. I am the only parent who sent doxy as far as I know. After the last camping trip where my son got bitten two students developed lyme within six weeks of the camp. Your friend's daughter might be helped by energetic testing to speed up the diagnosis. We have done a lot of that here and its very reliable. We have someone who uses an Assyra machine that can test for lyme and coinfections plus test which remedy or antibiotic works best. She will test for all lyme infections for 99 (includes a 30 minute phone call to go over results). My llmd says that 9 out of 10 times the machine is correct when diagnosing lyme. He gets a lot of the patients who test positive. PM me if you want her name. You just send a saliva sample so no need to travel.
  22. Thanks so much for the information. We have done a lot of muscle testing and its very helpful information!
  23. What's the best test for seeing if u have a mold issue?
  24. A good integrative llmd can handle it all. Our local Lyme docs here recommend testing for mold when patients do not get well. My sister went thru the same thing. She got better when she got rid of the mold. Some even think it can suppress your cd57 count. Her dr told her to stay away from areas w mold like steamrooms. I think he said hot tubs r bad too. Saunas r great. When she taook diflucan it really helped her. Our Drs recommended checking for mold w a mold sniffing dog because they find stuff the tests do not. It was 350. I did it too and we didn't have anything significant.dr shoemaker has a book about mold that I plan to read next. U may want to check it out. Mold is often a big factor in Lyme/illness. My sisters son had asthma which has gone away w the mold remediation. Good luck!
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