lyme_mom

Couple comments: If the dot blot is positive u r positive. Unlike other Lyme tests this test looks for Lyme DNA. If negative it doesn't mean there is no Lyme because it is not easy to find. The dot blot tests for Lyme DNA in urine after a bicillin shot (thru repeated testing over several days. If they find dead Lyme in ur urine that is indisputable. Neurogical Lyme is usually treated w a combo of antibiotics including ceftin or other one that kills Lyme in tissue. When this fails they do iv. This is what happened to my son. I think the integrative llmds are excellent and look for all potential causes of illness. The ondamed biofeedback machine offers another avenue for identifying the causes of illness. Bock in ny uses it as do some others like Sivieri in md. Beals is great too but does not have ondamed.

A couple weeks

Lyme mom, Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me. Thank you!!! I am learning a lot from this forum as members post about their Lyme treatment so we all get a lot out of this. Even though our lyme treatment is over i am still trying to improve the health of my kids so this does not come back. I learned about the probiotics and the detox liquid that we use from Wendy (sf mom) and elizabeth. My son was diagnosed with Lyme in June of 08 after developing bells palsy (half his face was paralyzed). An emergency room doctor diagnosed him with Lyme and his elisa test came back very positive (over 4) so there was no doubt. Apparently bells palsy in a child is almost always Lyme. He had Lyme for at least a year before this because he had complained of headaches, was sensitive to noise in the car and was more irritable than normal but my pediatrician dismissed my concerns that somethng was wrong. By the time he was diagnosed he was very ill and he needed a picc line for 5 weeks ( would have been longer but he accidentally pulled it out while sleeping). He also had bartonella although he never had a positive test for it. He responded to rifampin. He was on almost every combo of antibiotic over two years and two months. He was really doing poorly last April so dr jones introduced tindamax for the first time. It caused horrible herxing but it might be why he is now well. He stopped all antibiotics in sept and now takes tons of probiotics (at least ten 50 billion custom probiotic brand capsules) and half a cup of bentonite liquid a day (vitacost.com) plus low dose naltrexone. We haven't been that good about making him take the LdN either and he is still doing really well. He is playing in a rock band and playing basketball. The first month Off antibiotics i was very worried -as you can imagine-afraid he would relapse off the antibiotics but now I believe he is finally well. It has been almost four months off the drugs.I am so thankful that he is better.I am thankful to the two wonderful llmds who gave us our lives back. I will never take health for granted again. My son was never diagnosed with PANDAS although my relative was and that got me on this forum. My son's neurological symptoms were the palsy, some irritability and some cognitive problems doing school work math and Spanish. In answer to your question about how fast he saw significant improvement, he was doing great after six months and he was gluten free and dairy free. He slowly got worse after we reintroduced gluten and dairy but it was so hard to do that diet with a teenager. We tried so many things along the way-energetic testing, desensitizing him to gluten and dairy,etc. I could write a short book :-)! Dr jones told me in the beginning that he was very sick and that it would take about two years and he was right. If he had taken high doses of probiotics and done lots of detox he might have had a shorter treatment but we will never know. He took 4 billion strong probiotics a day and now he takes at least 500 billion. I think of the Lyme treatment as a wheel and each spoke is a different aspect of health that you need to check out and eventually you will get well. For my son the high emfs in his bed likely prolongued his treatment. Had I known about testing for emfs I would have done that from the beginning. When your child is so sick you need to try anything that might help and won't hurt. My other two kids had Lyme too as did I and we all are done with the treatment. In addition to what we are doing to heal our guts I have taken two of my kids for testing/treatment with a biofeedback machine called ondamed that can detect Lyme and other bugs. They also tried HBOT. I wanted to see if there was any lyme left and it looks like there isn't so I am hopeful. Feel free to pm me with any questions. It was a lot of work doling out meds for two years and traveling to new haven and seeing all the other practitioners we tried but it was worth it. I hate the name chronic Lyme becaus eitvsuggests you can't get rid of it and I don't believe that is true. Pamela Weintraub told me that she is well and this gave me hope during our long treatment. After what she went through with Lyme this was very encouraging to hear. Good luck!

Nobody knows what is and is not Lyme disease and his physical exam is like nothing I have ever seen. He is so compassionate too and held my son's hand while they drew blood because he was so afraid to see another needle after his picc line. The only thing I suggest you do is to add high doses of probiotics and lots of detox to whatever dr jones has you do. We worked with an excellent holistic llmd too who tested for heavy metals and prescribed ldn, low dose naltrexone, a powerful immune support supplement. Seems to be used by the holistic Drs more. Also check your house for high emfs and mold as these can be huge factors in illness. I didn't know of these things initially and 18 months into my son's treatment learned his bed had super high emf readings. We turned the power off to his room as a solution. He is doing very well now and finished his treatment in sept.

The bands that the other tests leave out are 31 and 34. Igenex not only tests for these most significant Lyme bands but I think they also test for more strains of lyme. There are 300 some odd strains of Lyme disease and the regular insurance covered testss test for only one strain. Lyme spirochetes are morphing so it is impossible to have a reliable antibody test -it's a moving target. The absence of antibodies does not mean the patient does not have Lyme. It's a clinical diagnosis. Also some patients don't start producing antibodies until after treatment has begun and the body can mount a defense against Lyme (same is true for bartonella and babesia). Keep in mind that the CDC and the FDA also believe all vaccines with mercury in the are perfectly safe. I think you need to read cure unknown, a thorough investigative work into the world of Lyme disease. It is very persuasive and can explain everything to you.

Another trick for headaches is to put feet in warm water and cold compress on forehead. Works well- a naturopath told me about it.

You know how a lie detector test works where it measures the stress response of the body while a person is answering questions? The pulse quickens when someone is lying and the lie detector sensors measure this response. Well muscle testing is based on a similar premise-that when you hold a vial of lyme or a vial of dog hair and you react to it by your muscles getting weaker (you can't hold your arm up when the practitioner pushes on it, for example) this means you have a problem with it. At first I thought it was a little crazy but it was very helpful b/c the blood tests are so unreliable and so much of the lyme treatment is guesswork. We did muscle testing with our chiropractor, a naturopath, our biological dentist, a holistic nutritionist. My first experience with muscle testing was when I realized that I was allergic to our new Golden retriever puppy. I remembered that my chiropractor had told me that he was learning how to treat allergies so I called him up. I was not about to take antihistamines for the rest of my life in order to keep the dog so I figured it was worth the try. Not only was the chiro able to test for the dog allergy but he was able to treat it also with a laser. With one treatment I stopped reacting to the dog. He used a red laser light on acupressure points while I was holding the puppy-this calmed my body's response to the dog. WHen the puppy lost his puppy hair and got his adult hair I reacted again and had to return for a treatment that would desensitize me to the adult fur. It worked and we just got a second puppy and I did the same thing with my chiro. Most recently we have tried the Ondamed machine which does something similar. You attach electrodes to the body and the machine tests for frequencies of bugs and other issues. Every bug has an energetic frequency. If you find a bug (lyme, parasite, etc.) the machine can send a frequency back to the body to annoy it and it either kills it or causes the bug to be expelled. Dr Bock in NY uses the Ondamed machine and I first read about it in Connie Strasheim's book about Lyme Disease. A local doctor has the machine and we just started using it to see if there was any lyme left. This doctor just started using it but said that the response by patients has been very promising so far. I think this is a very powerful machine, much more powerful than anything we have tried thus far. The machine costs about 25 k I am told.

For Lyme they prescribe high doses of antibiotics but we never had that high a dose of azithro and we took it a long time (my kids and I). I took 500 mg a day so that seems high for a child to take 600. My kids who weigh a little less than that, 70 to 90, took 250 a day along with other antibiotics. It might be better to take 250 every day rather than a day on and a day off. I'd have him evaluated for other infections like Lyme too because the missing link might be that you need a combo of antibiotics as is usually prescribed with Lyme. With that high a dose , even every other day, my non medical hunch would be that it might not be the right antibiotic or you may need to either change medications or to add a second or third antibiotic. When someone has Lyme an antibiotic that has helped before can become ineffective as you describe so the llmds switch it up often. Lyme and coinfections are just so common in boys that age and especially in kids diagnosed with pandas. You can have just one symptom and have Lyme or bartonella or babesia, etc. It's just another avenue to consider.

Look at his tongue. If it has a whiteish coating that is a sign of yeast. Probiotics are really important and can help avoid yeast.If the tongue looks good I'd wonder if the antibiotic was killing something.

Very exciting! The water thing sounds like biofeedback similar to what the ondamed machine does -testing for frequencies of bugs and viruses. Very cool.

Thanks for the info. We take freeze dried garlic a lot. I did not know that cooked onions and garlic may not offer similar health benefits but it makes sense that something would be lost in the cooking.

I had ko idea about onions and garlic feeding parasites! I thought those things were good for you! I guess they are if you dont have parasites. I thought garlic kills bugs. Thanks for the info.

When my kids got sick with Lyme i was ready to find a place where there was no Lyme and move there-but there is no such place so I can relate to you wishing you could create a "safe" place to live. I do know that if we ever move I will have any prospective house checked for mold by a mold sniffing dog and I will test any house for electromagnetic pollution and be sure it is not under a power line or cell tower after all I have learned about such problems during our Lyme odyssey. I won't ever live in the woods either :-). Affter two years of dealing with Lyme and everyone ia better I can relax a little more than before anout the possibility of getying reinfected. Dr jones told me that the second time you get Lyme, if u r reinfected, is not as bad as the first because you know the symptoms and hit it earlier.

Debbie is a nurse who knows a lot about Lyme and pandas. She has dealt with both personally in her family so she gets it. Beals is a holistic md w 35 years experience who also is very knowledgeable about Lyme and pandas. Both are members of ilads i believe. Beals treats tons of kids without Debbie and has probably treated more kids in his long career than most family doctors. They work well together but he also works on his own because he is after all a very experienced holistic md. We use Beale and we are done with our Lyme treatment. I can't say enough good things about him. I also have met Debbie and know of her work and she is well respected at national integrated health associates in dc. Neither Beals nor debbie will treat for Lyme if no benefit is seen within two months. Worry more about untreated Lyme than treating something that turns out not to be Lyme. Both Beals and Debbie would require patients to take probiotics and watch for yeast issues. Both will look for other causes of the symptoms including nutritional deficiencies and heavy metal toxicities. Most Lyme patients have multiple infections, nutritional deficiencies and some level of toxicity. This is why an integrated approach to wellness works best. I think Debbie and beals have seen a huge connection between pandas and Lyme which many if the pandas doctors do not get yet exactly for dr b. I am sure that there are cases where the Lyme treatment actuallys treats something else but what does it matter if the patient gets well? Most parents care more about the outcome than the diagnosis. For example the Lyme protocol treats mycoplasma and erlichia so you don't really need to test for these things if you are already treating for Lyme. I am sure there are other infections treated w the Lyme protocol.

I dnt know about Pandas but Lyme can also impact cognition and this is well documented. Google the ABC's of Lyme Disease for a great overview of how tick borne infections affect children in school. There are blurbs in the flyer from top Lyme experts in a number of diverse fields (pediatrics, psychology, optomology.etc.) written for the purpose of educating schools about how these infections can affect a child.

I think you explained it well. My llmd says he treats the patient not the test result. He is focused on symptoms and the patient's response to treatment, not antibody testing because it is not definitive. Of course it helps with insurance coverage for a picc line to have a positive test according to him.

Yes that can happen. In fact you can have three kids with positive lyme tests and only one or two of them are "sick" with lyme. Dr. Jones in CN told me that this happens a lot. He says he will get a whole family and the mother wants to treat them all b/c of their positive lyme tests but he will not treat a child without symptoms or physical signs of lyme that he sees in the exam. This is because a lack of symptoms means the child is not sick with lyme. My kids did not have congenital lyme according to Dr Jones (b/c they were not sick as young children) but they each tested positive for lyme. My middle one actually had a lot of pluses for a couple bands but he was never very sick with lyme. I can't remember the bands but one of them had three pluses I think. His body was fighting the lyme and handling it well. He also did not have any coinfections (as far as we know :-)), unlike the rest of us and that makes a huge difference too.

There are a lot of numbers on the test so it can be confusing. It is easier to read when you are looking at the test but I think your 243 number is the number they look at and while it is high I don't think it means anything. For an adult this would be an excellent score but this test does not work on young kids as well as it does on adults. For example, my then 10 year old son's score was 400! This was when he was first diagnosed with lyme. Then we sought a consult from Dr. Charles Ray Jones in Conn and he told me that he doesn't use the CD57 test on kids b/c it doesn't work on kids. I am guessing that a really low cd57 score on a child might mean something but that's just a guess.

So glad to hear that. Flagyl may not cause as bad a herx as he just had And often the herxes get easier. That was my experience. U just never know how each person will react to each drug. I know a number of people who felt better on flagyl when they took it (not just later). If you try It and it does cause a bad herx you can stop it until later. If he is feeling ok now I underatand why u would not want to make him miserable for the holidays but the school break is a good time to deal with herxing when he can sleep in and you don't have to deal w school. Is the school being supportive?

I took It for lyme and I think it may also be effective against a coinfection like babesia too. It is often used to treat Lyme and i am pretty sure it is considered a cyst buster, meaning it kills the cyst like form of Lyme.

My llmd says over 100 is important to have before stopping treatment or else chance of relapse is high. Under 100 is suspicious for Lyme; under 60 is definitely Lyme acc to what I have heard. My llmd believes Lyme is the only thing that can destroy cd57 cells. I have also heard that some believe mold can depress cd57. Never heard anything about mycoplasma though. A healthy cd57 is over 150. I think the Lyme treatment is the same As the mycoplasma though so it doesn't matter so long as you get the right treatment.

It's common with lyme and so are heart issues. My sister had both with Lyme. The heart stuff went away but she still has a thyroid problem although her numbers are fine. Lyme messes up your metabolism too and often causes weight gain, sometimes weight loss. You can get rid of Lyme so don't listen to anyone who tells you otherwise. It's hard to find that info when you read about Lyme. My doctor told me he has a lot of success at getting rid of Lyme and he was successful with us. You need to attack it with all modalities though: antibiotics, nutrition (probiotics especially), biological dentistry (to deal w root canals, dry sockets from wisdom teeth and mercury amalgams), detoxing and possibly chiropractic, acupuncture, and energy medicine.Clearly the right combo of antibiotics make all the difference but you need to do everything you can to help remove obstacles to your health. For example, a chiropractic adjustment got rid iof the remaining headaches My son had that were not going away w treatment. He had gotten his neck out of alignment on some wave water ride at an amusement park the week before he was diagnosed w Lyme. So his headaches were part Lyme/bartonella and a chiropractic issue. Elimination of symptoms is the goal because then you can be done w treatment. Knowing what is Lyme and what is something else is important. It's hard to know but getting the body back in balance is very helpful. Now at least you know what you need and that is half the battle!

That's good to hear. I can understand your worry. I took flagyl and although it didn't cause me to herx I did not like it. My son took tindamax, which is a sister medication to flagyl, and that was rough. He only took it two days at a time on weekends. I must say it probably is part of why he got rid of lyme and is better now. It is sure hard to imagine that when you are going through the herxing.

Good for him for speaking up. That is awful about the teacher coughing all over the place. Poor guy. Treatment is hard but he will get better. My llmd says its three steps forward, one step backward as you go through treatment. Is he still doing as poorly as he was doing on Friday?

I wasn't clear. I don't think one shot last friday Would cause such a long herx but I could be wrong. This is 5 days later. Don't know how long it stays in your system. I have read that ivig can cause bad herxing and if this happened before at the three week mark it seems very possible that it is happening again. I am just guessing that ivig has a bigger effect than one bacilli shot. The two together along w exposure to sick people could b a perfect storm.