lyme_mom

So interesting what klinghardt says about the emf protection devices. I was advised to Measure emf levels in our house when my son was not getting well from Lyme. A holistic dr lent me his device from safe technologies and my son's bed had extremely high levels of EMFs-in the "highly abnormal" range. I was told Lyme thrives in high emf environments.we shut the power off to his room and remeasured-levels were normal. We kept the power off for months and then I got an electrician to run a new circuit in the room and instal a switch that shuts off the room at night. We also stopped using our cordless phone. My son was done w his Lyme treatment within six months so I think it helped. We have not used the emf devices with the exception of the Biopure device for cell phones. I also got earthing.com grounding pads for the beds and this apparently trumps Amy emf issue by grounding the bed. If this is true it may be a good solution with no side effects. There is so much to learn about this. I'd like to set up a server so we can use cat 5 wiring in our house for plug in Internet access because I am told the remov of wireless routers can have a dramatic effect so it must be very good for u.

My son and i stopped our Lyme treatment a year ago and we are doing very well a year later. I believe you can get rid of Lyme and these other infections. My daughter is still dealing with air hunger and some fatigue and she is on herbal treatment for babesia. I believe that it is important to believe you can get rid of this because to assume you will always have these bugs is self-defeating. My son was quite ill and I was worried he would never get rid of Lyme. I always reminded myself that Pamela weintraub got rid of Lyme and she was super sick. I feel great and do not need naps anymore-no fatigue!!! I am optimistic that we can stay well. Think positively.Of course I continue to work on keeping us well and keeping up with the latest lyme so I am prepared if it does come back.

My son developed bells palsy in 2008 and it was a blessing because it alerted us to the fact he had Lyme. We realized that he had had Lyme for a while but we didn't know it. He did not have neuropsychiatric symptoms other than being irritable at times like any other lyme patient. He needed a picc line because the oral antibiotics did not seem to be working. He only had the picc for 5 weeks instead of the two months the dr wanted because he accidentally pulled the line out while sleeping. He was very ill and it took two years and 3 months to treat but he has been well for a year now and off treatment. He is on antibiotics again due to a tickbite while we await test results for the tick. He started doxy the day he got the tickbite so this time we r on top of it.

It is a hard movie to watch especially when your child is very sick with Lyme. I cried when i watched it the first week my son was diagnosed. It does prepare you for the controversy though and that's why it is important. Keep in mind that most of the people in the movie get well w the right treatment. Even pamela weintraub, author of cure unknown, beat lyme so that insired me. Dr J told me that all kids get better with the right treatment and my son is well now. He was the sickest one and it was hardest to get him well.I was pretty sick too and am fine now. We r still working on my daughter but her symptoms are very subtle. When you realize how common this disease is and how so many people have it and dont know it (or will eventually get Lyme)you can consider yourself lucky that you at least have the knowledge and a llmd -way ahead of most. That's how I looked at it. There are also quite a few people who have it in their family but who refuse to believe it. To get rid of this disease you have to be educated about Lyme, patient and have an open mind- a tall order for many people who want to rely on their clueless family doctor and not read anything. So we r lthe lucky ones in some ways :-).Hang in there!

Our holistic dentist talked to me about KPU a long time ago. We never did the treatment on my son because he got better and my llmd was doing other things and it was too many supplements. I think the dentist recommended some supplement including taurine. I'd have to look it up to get all the info but my llmd told me that one of those supplements in high doses could really upset your stomach. The dentist told me that it is a big problem for many patients. ART is pretty amazing stuff. BTW am pretty sure that I was told by my llmd that Tums have aluminum in them and to avoid taking them. I am doing the heavy metal detox for mercury and aluminum. I bet the infrared sauna helps with detox. Keep us posted on your progress! Very interested...

This is all great advice. We never noticed when the symptoms occurred -so I agree that it really can vary from person to person depending on the bugload they have. We rushed into testing the whole family with igenex when my first child got lyme. I wanted to know if anyone else had it but now I wish I had waited u til after doing a challenge w either antibiotics or herbs. We saw evidence of Lyme exposure with the igenex testing but it was very borderline and I have wondered what it would have been after a challenge. There is no doubt we had lyme (or some bug that responds to Lyme/babesia/bartonella treatment :-) sobthat is the most important thing. That's all that matters-if the treatment works. I agree that you need to see a llmd to rule out Lyme. It's rare that a regular doctor or infectious disease doctor has the experience to diagnose and treat Lyme properly.

I think it takes a long time to get rid of Bartonella. I was told at least four or five months when we were treated. I have also read that Bartonella is more difficult than lyme to get rid of. We did not have the psychiatric symptoms but bartonella is notorious for psychiatric symptoms out of proportion to the other symptoms (aches and pains etc.). I was recently reading Dr. Schaller's book about Babesia and he has a psychiatric symptom list for TBDs that is more detailed than any I have seen before. ("eccentric obsessiveness, rigidity, poor self awareness and poor insight, stress with transitions or change, wired intensity,... etc.) There were many more symptoms but those are a few that relate to what you describe. The holistic MDs I know are very opposed to steroids b/c they believe they can have a really negative effect. I am no expert on this but since you are looking for our thoughts I know my doctors have said absolutely NO steroids. I would suspect that her symptoms are either part herx and part steroid effects. My son who was very sick with lyme had an eye irritation recently and they wanted to give him steroid drops in his eye and I said no b/c I don't want to take a chance that it would bring back the lyme. Steroid eye drops might be ok b/c they are not systemic but I get the feeling that they just hand them out when they don't know what else to do. We opted for allergy drops and his eye is looking better. I just don't want to deal with steroids at all if we can avoid them. Its a long tough battle to get rid of any of these diseases so hang in there. If your daughter has been sick since birth it will take a while. Good luck. You will likely see more improvements when she is on the full dose.

Thanks for posting this. It is very interesting. I am glad to read that a CDC scientist is taking this seriously. 26 strains of Bartonella-wow! Its catching up with Lyme.

My llmd has told me that the labcorp test is not very sensitive so a positive on labcorp is significant. I hope I never need to go to an infectious disease doctor for anything because most of them do not seem to be too smart. All the information about Lyme Disease is available via the ILADS website or through lyme organizations and yet these doctors continue to dismiss symptoms and test results that point towards lyme. Some ID doctors get it though-like Dr. Jamsek in the Under our Skin movie. Cure Unknown is even better than the movie for getting a quick education in lyme disease. Its a great book and Weintraub is an excellent writer and dogged science reporter with a wry sense of humor that I enjoyed.

Not everyone sees the stretch marks. Don't know about the other tests. Apparently the stretch mark can come out at any time during the treatment, even after a year or two. There is no typical course for bartonella, just like with lyme.

It is an ordeal and it depends on whether Lyme is the prominent infection or not. My son had a picc line (it was stressful getting it put in) due to bells palsy that seemed to be spreading in spite of oral antibiotics. I was eager to get him the iv antibiotics because it crosses the blood brain barrier better. However after one month of rocephin he still had headaches and dr j recommended that my llmd treat for bartonella w rifampin. Within days his headaches went away so in our case the bartonella treatment was important too. It was the summer and it was hard for my active son to keep from getting really sweaty and to avoid exercising his arm. Several times we had to get X-rays to see if the line was still in place. Once a visiting nurse moved the line while changing the dressing. That was one of the most stressful things for me-watching the nurse change the sticky bandage without pulling the line out. Even the line is sticky from the tape so it is really tricky. My son ended up pulling it out in the middle of the night one night while sleeping. I guess he was itching it. He only had it 5 weeks at that point and the llmd switched to leaks at that point. If he had gotten it longer he might have gotten better faster but they don't want to install it twice unless it is absolutely necessary. Tindamax seemed to make all the difference in his treatment though and he got that much later. We spent a lot of time going to play games at chuck e cheese during this time because any other strenuous activiiy could have moved the line in his arm.

Its shocking

I agree with MIchael. Neither one of those doctors is qualified to rule out lyme and the one who said that without a rash it is not worth testing is totally wrong. I would make sure it is not lyme first b/c you may not need ivig and there are risks that go along with ivig. From what I understand it is a pooled blood product and they do not test it for lyme or other tbds which are so common in the general population. I would worry about any blood product being introduced to my child b/c we all know how hard it is to test for these infections. The muscle testing option is a good one, especially if it is with a llmd like dr n. THere is also no harm in a trial lyme treatment to see if it has any effect. Of course you can't expect either of the doctors you mentioned to know how to treat lyme properly or to know what coinfections are likely involved. If this is lyme you don't want to take a long time to figure that out b/c the sooner you treat the better the outcome. Good luck!

Right but it can indicate if Lyme is the problem or more likely a confection, ie. A high score would make them suspect a confection is the problem and a low score indicates Lyme is active. Insurance covers it and it's very helpful to have a baseline for future comparison. Yes that is true! They are starting to question the use of the cd57 according to my doctor. Anything to limit our treatment of lyme...

Right but it can indicate if Lyme is the problem or more likely a confection, ie. A high score would make them suspect a confection is the problem and a low score indicates Lyme is active. Insurance covers it and it's very helpful to have a baseline for future comparison.

When you have a really sick child with lyme disease having a chiropractic evaluation isn't a bad idea to be sure that the child is in alignment, as long as the chiro comes highly recommended of course. My son had very bad headaches and some leg pains so I brought him to our chiro during the first few months of the illness. The chiro said his neck was out of alignment and made some adjustments that got rid of the remaining headaches he had. This was very helpful b/c the goal in treating lyme is to get symptoms off the table so you know when you are done with the lyme treatment. If any symptoms are not lyme related it is better to get rid of them so they do not confuse the picture. My chiro is very holistic and also does kinesiology and uses a laser for healing too. I am always surprised at what he can do. I'd say follow your instincts and go if you think it might help.

Any dr can order igenex but the cd 57 test from labcorp is a good place to start. I would not test w igenex until u have done a challenge either w herbs or antibiotics so u get the most positive result u have.

I would suspect bartonella before anything else given the lyme diagnosis. It is quite typical for these pains to crop up during treatment. I had them and they are now gone. Its easy to think it is a structural problem but in my experience I bet its bartonella.

Our family took very ugh doses of it without a problem but our llmd asked me if it caused constipation so it may do that to some people. He said the high doses were fine though.

Bartonella is notorious for causing severe psychiatric symptoms out of proportion to other symptoms so that was not a good symptom list to go by.

Definitely go to an alternative doctor-chiro or naturopath or acupuncturist who does muscle testing or NAET. An allergist will laugh and want to give him drugs or shots. My chiro had just learned how to do this so it can't be that hard. The red light is a laser that penetrates the skin. It won't burn you. The light is used to heal injuries too. It's safe. I'm sure the top athletes use it to heal. Over our long Lyme treatment we found some great alternative practitioners and most of them use some form of this muscle testing. This whole world of alternative medicine was opened to us because of the Lyme. Because of the Lyme I was willing to try anything that could help and wouldn't hurt. There is so much this practitioners can do to balance the body and help it heal.

Almost 4 years ago we bought a golden retriever because our kids were dying for a dog. On the way home (which was a 25 min drive) I could feel my throat itch and eyes water. I have no other allergies by the wayz Within a few days I had a full fledged cold and i felt awful. There was no way I was going to take drugs to suppress my immune system in order to keep the dog so I contacted my chiropractor who had mentioned to me that he was learning how to treat allergies with muscle testing (also called naet). Anyway he tested me and I was reacting to the dog. So he had me hold the dog and waived a red light over acupressure points to calm my bodys response to the dog.it worked but a few months later I had to do it again when the puppy hair turned to adult hair. Worked again. We just bought a second dog at Xmas and I did the same thing again. I am no longer allergic to either dog. My doc says it does not always work but it's sure worth a try! I think it's amazing and m kids didn't have to lose the dog.

Absolutely not-not even for a day.

We have not used that test but I happen to know that my llmd uses it sometimes. He recommended it for someone I know who had quite a few non specific antibodies on their western blot. He said the test could identify coinfections and is more sensitive. That's all I know.

I think a very large percentage of PANDAS cases involve other infections like lyme. I don't think the PANDAS doctors understand this well enough yet. They are not wise to the ways of lyme and other tbds and how many sneaky manifestations of these diseases you can have. Your case sure sounds like lyme and those results are indicative of lyme especially given the symptoms. Band 23 is very specific to lyme and I would not call it a false positive but a red flag. These so called PANDAS symptoms are just a list of characteristics that many PANDAS patients have. It is quite possible that many of these "PANDAS" cases are really lyme or bartonella or babesia. I'd get a new doctor. That's what we did when we realized how clueless ours was about Lyme. If you can locate a good ilads trained lyme specialist that is all you need. Once we found a good lyme doctor he became our family doctor. Can't go back to the clueless, uninformed doctors again... Ours is also holistic so he is really different. The big name hospitals are not any good at treating lyme, unless its Columbia University Medical Center's team. I think the lab tech's analysis is a little too simplistic. There are so many forms of lyme and coinfections that factor into whether a person gets sick and even if you have a good immune system it can bring you to your knees. Pamela Weintraub talks about the various strains and how some are more virulent than others. I would agree though that you can be sure that you have been exposed to lyme with that many tick bites. My family never sees ticks and most of us have never had one attached that we know of and we still got lyme. I think mosquitos and other insects must be transmitting it too b/c we have had plenty of mosquito bites. I would love to see a study of all the pandas cases with joint pain to see how many are diagnosed with lyme by lyme literate doctors. I bet the number is very high. Some of the PANDAS treatments would keep lyme at bay too so some kids need "maintenance" antibiotics for "PANDAS". For example, Augmentin XR is a treatment for PANDAS and it is also used for lyme (but with lyme you also get ceftin or some other antibiotic too). Usually you get three antibiotics when treating lyme and coinfections and the right combo makes a huge difference. Its trial and error with a qualified lyme doctor that works best. If all the PANDAS kids with lyme symptoms were given the right combo of antibiotics ordered by a lyme literate doctor I think more would be cured and be able to get off antibiotics permanently. The ones with joint pain would be at the top of the list as suspicious for lyme and coinfections. Not being able to walk screams lyme disease to me.