lyme_mom

PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). I think that a child with symptoms that could be lyme disease who is positive for band 41 should be evaluated by a lyme doctor for a trial lyme treatment and/or tested via igenex. The other lyme tests are worthless, wrong fifty percent of the time. Anyone with band 41 who has not tested via igenex is very likely missing positive bands for 31 or 34 that are not on the non-IGENEX tests that insurance covers. The tests from labcorp, quest and other labs do not test for bands 31 and 34, important antiibodies to lyme. Because there is no definitive test for lyme there is no harm in a trial lyme treatment for a child who has symptoms that will not go away. You will get a pretty good idea if you are on the right track once treatment has been underway for a month or so. I think that most people who are positive for lyme are positive for band 41. Maybe PacificMama can point us to her previous post which was so helpful.

That sounds positive to me.

I should add that the dosage is based on weight but my kids were taking these doses and they weighed between 60 and 80 pounds. Mercola's website also has info on dosages of D3. In any case you need to see where they are before you supplement by getting the 25 hydroxy d3 blood test.

It is a stressful decision because of all the pressure they put on parents (and kids at school!) to get the flu shots. We have never gotten the shots and even while sick with Lyme last year my kids were sick with h1n1 for a day only. I have a great acupuncturist-herbalist who treats kids and I know I can take them to him if they get really sick. I gave them herbs and an anti-flu Chinese tea that he prescribes at the first sign of illness. THis coupled with up to ten times the daily dose of vitamin d for three days (50 to 100k ius of d) and extra vitamin c, freeze dried garlic and probiotics really help knock it out without the worry of injecting them with mercury or aluminum. My md who is holistic advises against all flu shots, especially fo those who are sick or who have asthma. My sister's 5 year old son has asthma and he told her and me that there Are studies that show more hospitalizations of kids with asthma after the flu shot. The problem is the mercury and the fact that it is the second most toxic substance on the planet and we should not be injecting iit into our bodies.bid get his d levels checked and supplement if the level is not around 60 or 70. To boost d the child's dose is 5k ius in the winter, 2k in the summer. If levels r good, 2 k is fine in winter. The adult doses r 10k if u r low in winter and 5 k to maintain levels in winter. I'm typing on iPhone so sorry for the typos. Might b good to consult with a holistic md. Good luck!

I would not cancel the llmd appt because if this is Lyme you don't want to wait. They can deal with this-just call them and explain what is going on. Good luck!

Don't pay attention to the label when it says take on a.n empty stomach! My llmd said to take doxy with food and that was the only way I was able to take it for two years. Taking it in the middle of a meal is exactly what I did (good advice). I'd eat an egg sandwich For breakfast and take the doxy halfway through it. If I deviated from this I would throw up or feel like I had to throw up. You need to sandwich it in between bites so itt is never alone in your gut :-). Sometimes I'd take a sip of kefir too to get it down without upsetting my stomach. I know u shouldn't take it with dairy but it helped and I didnt drink much. There r also two versions of doxycyclene. I took tiny pink pills and once I got large blue pills when I picked up a refill. I was told that the bigger pills are considered more effective Or better absorbed but they made me feel sick so I switched them for the pink pill. It got me well so it worked just as well.

That's great. That symptom can also be a symptom of babesia. They call it air hunger. You feel like you can't get enough air. I had this symptom for one week straight years ago and years later realized it was the first sign of babesia. It was pretty terrifying to feel like you cannot breathe. You can have babesia and have no symptoms at all but if you have babesia and you get lyme, you can get very sick. When you start to treat the lyme the symptoms of coinfections start to come out. Just something to keep in mind. All these tests are pretty unreliable but if you get a positive result that will mean something. A negative doesn't mean anything though. Tests are very insensitive and do not test for all known types of coinfections and lyme disease. Other symptoms to watch for are thigh cramps, sweats, headaches, calf pain, sore soles of the feet, etc. All these can be clues to whether or not and which coinfections are involved.

It sounds like you are lucky to have had such success with the antibiotics so far. I would just say that both those antibiotics are effective against lyme disease too so keep this in mind if she relapses after stopping the antibiotics. I think every child with these kind of symptoms that you describe should be evaluated for lyme disease and other tick borne diseases as well as strep b/c being on the right combination of antibiotics is critical to getting rid of these diseases. So I wouldn't stop at testing for strep (also test for bartonella, babesia, mycoplasma, etc.). Diagnosis of tick borne infections is a clinical diagnosis b/c most tests are not very reliable but they are worth doing just to see if it points you in a direction that will help with the treatment. Some of you may laugh at this but knowing what I know about lyme disease I would even test a well child for lyme just to know if he or she has been exposed. Knowing that your child has lyme specific antibodies would certainly heighten a parent's awareness of any lyme symptoms. I would have done this years ago for my kids had I understood how prevalent lyme is and how sneaky it can be. Had my son been tested as part of his well checkups we might have discovered my son's illness years earlier and we might have had a better idea how long he had lyme disease. He might not have needed a picc line or to be treated for two years had we picked up on it earlier. Even though I thought my son was well and not sick in the years before his lyme was diagnosed, in retrospect he did have symptoms that I did not recognize as symptoms (ankle pain, a weird rash, easily overheated more than other kids, headaches, sensitivity to noise, etc.) Perspective is everything and I just didn't have any knowledge of lyme and unfortunately neither did my pediatrician :-). Good luck.

Couldn't raw milk also carry Lyme too? Did you read that it can carry babesia?I would be interested in where i vould find more info because I looked years ago when i considered using raw milk because of all the health benefits. I decided against it because cows get Lyme (I read about this in a Lyme book) and I know they are not able to test humans for Lyme with any degree of certainty so I'm sure they can't test cows and the coat would be too high. We haven't used real milk in years because it is not good for you. Its the first thing they say stop if u r sickbor have any health issues. That says a lot to me. I know raw milk is better. My kids like rice or almond milk. Homemade cashew milk (in a vitamixer blender) is the closest taste to creamy milk. It's really delicious on granola.

I've heard that the full moon can stir things up.

They also sell a uv light wan that kills 99 percent of germs that I bought to clean suitcases after dragging them through airports and hotels. They never get cleaned which is kind of gross. It would clean a toothbrush without leaving any residue. They also sell a uv vacuum that is designed to suck up and kill distmites and other living things u dont want, even bed bugs. The person who did the mold check at our house told me about it. U clean mattresses and rugs with it.

We have never gotten flu shots and do not plan to. They are full of toxins and apparently they don't really work in preventing the flu. My doctor says tens years of flu shots will triple your chances of getting alzheimers due to the mercury in the shot. We had great success using holistic methods to fight the flu last year and my kids had H1N1 and it lasted a day or two. We used chinese herbs and tea, extra vitamin d when they were feeling sick, probiotics and vitamin c. I know this is controversial but this is what we are doing and I have a lot of confidence in my MD who advises against the shots.

Sensitivity to noise is often a sign of Lyme disease and Lyme can look exactly like Pandas. I would have your son tested for Lyme as soon as is possible using Igenex. Dr L is not a Lyme expert so make sure you cast a wide net to find all the possible causes for your son's symptoms. I have an excellent llmd who works near dr l in dc if you want the name. It's never too late and all kids can recover from Lyme (if lyme is involved). Lyme is an epidemic from coast to coast so it should be one of the first things that is considered, especially in a young boy (boys ages 8 to 15 are statistically at high risk for Lyme and other tick borne diseases like bartonella and babesia).

lyme mom- I'm so pleased to hear your family is off abx and doing well! I wish you continued success and good health! Thank you so much. It is such a relief!

Take a picture of the lines because it could be important later. Bartonella has weird rashes that look like stretch marks.

If you still have doubts you could seek an opinion from another llmd. We did this and it was reassuring to have both llmds agree about the direction of my son's treatment. Second opinions are always worthwhile. Even though we have an excellent local llmd we still went to see dr jones too. Even though we were in excellent hands with our local Lyme expert it was reassuring to hear the same advice from dr jones during the lowest points in the treatment. Actually they each have their own strengths and we got different benefits from each doctor and I am thankful for them both. If you saw no benefit from the iv antibiotics (not a worsening) then it does sound less likely that lyme is involved. Iv rocephin would not kill bartonella or babesia though. I understand the worry though. My family is off antibiotics now and so far so good but it's always in the back of my mind if my son says he is tired or something hurts or if i start to feel bad.I hope someday that the worry of Lyme will be a distant memory.

It's www.EsaAssociation.com or you can email them at info@EsaAssociation.com. Good luck!

I had someone come called canine mold patrol and it cost 325. Two air sample tests were included and she went through every room in he house with a water meter and then she brought the dog through. He alerted in a couple spots but there was not a big problem. The air sample was fine. You could start with an air sample test but I dont know where you buy them. This mold inspector gave me the name of the association she belongs to where u can find a canine mold inspector near you. I can find it and post it later. These dogs are trained like bomb dogs and they only alert to bad mold and they know exactly where it is

This is an excellent article! Thanks for posting. It really brings together so many complementary treatments (all of which we have utilized along the way). She sounds like a wonderful doctor. Mold is a really important factor with lyme. My llmd urged my sister to have her house tested b/c she wasn't getting better on the antibiotics. She discovered that she two forms of toxic mold in her house that was circulating through the ac system. She feels a lot better now that this has been removed. A friend in California told me that her husband's lyme doctor says he won't treat anyone with mold b/c they simply will not get better. They could not get rid of their mold and they are moving. It is interesting that Dr Corson uses the cd57 test (maybe this is just for older children) and she recommends supplementing with vitamin D (as does my llmd). This was the subject of another thread about the marshall protocol. EMT testing and elimination is also very helpful for some patients. We discovered that my son who was most sick with lyme was sleeping in a place where the emfs are higher than any place in the house (4800 and anything over 1500 is considered highly abnormal). We turned off the power to his room when he sleeps and it reduced the levels to 500. My kids' rooms are on the side of the house by the power boxes (cable, hvac, etc.). I read that smart meters make this even worse. These are meters that constantly broadcast from your meter to the power company. They have them in parts of San Fransisco I read. All this "progress" may be killing us :-). What Corson does is what holistic mds do to heal anyone who is sick (lyme, cancer, autism, etc.) It is overwhelming for a new lyme patient but it offers so many possible ways to help your child. It is fascinating. This is the future of medicine, although insurance may not cover it unfortunately.

It is probably herxing but it is good to let the llmd know. Eye pain can be a symptom but I should mention that my sister had pain behind the eye during her lyme treatment. At the urging of our llmd, she had her house tested for mold and finally learned that her house had toxic mold in it. She had no idea that she had a leak and that this mold was circulating through her home. Once the mold was removed and her air vents were cleaned the eye pain she had had for a long time went away. Mold in the home can make it hard for a person with lyme (or any other illness for that matter) to get well. I would write down the symptoms (I know it is hard to do with all you have going on). Thigh pain is a symptom of babesia. When you start treating lyme sometimes the coinfection symptoms become more pronounced. Good luck!

Kids can present with classic PANDAS symptoms and have lyme disease. I think that all kids with suspected PANDAS should be screened for lyme, bartonella and babesia b/c these diseases are very common from coast to coast. There is no place in the country that does not have lyme disease (or else I would be moving there :-)). Lyme or these other tick borne infections can look like PANDAS and boys ages 8 to 15 are at high risk for getting lyme statistically. Lyme is at the root of many different health problems and it is treatable if you see a lyme literate doctor. If lyme is involved the good news is that the right combo of antibiotics (or anti malarial meds in the case of Babesia) can get rid of the symptoms. Good luck. I would not rely on anyone but a lyme specialist to tell me whether or not my child has lyme. The tests are also not very reliable b/c there are many, many false negatives. Igenex testing is a good place to start but if you want to save money I would just go straight to a llmd and get his or her opinion. A trial treatment is worth a try if the doctor believes the symptoms are lyme related. Usually you will see a reaction within weeks of starting the treatment that will let you know you are on the right track.

Dr jones told me that babies do not always get Lyme from a mother with Lyme so unless your baby is having health issues she may be fine.The babies probably get treated with amoxicillin.

I would like to see the show. Thanks for posting. I read the book about this called Lab 257 and the author is very credible. Its all about a government biological weapons lab based on Plum Island and how the cow got out of the barn, sort of speak. The first head of the Plum Island Laboratory was an ex nazi scientist who brought his own tick collection over from Germany after WWII and they used these ticks to study diseases. They infected animals and kept the animals in outdoor pens in the path of migrating birds. Over time the facility degraded and needed repairs but with budget cuts the place got ignored. The chimney that was supposed to be sealed became porous so biological waste that was not supposed to get out, got out. He makes a compelling case that lyme disease exploded like a bomb right across the Long Island Sound and that it probably had something to do with Plum Island. I think it was definitely a factor in the spread of lyme disease.

I thought lyme and or coinfections when I read your post. I would see a lyme specialist before I would see a rheumatologist because there seems to be a clear connection to the antibiotics which suggests it is a die off reaction, also called a herx. The rheumatologist won't know anything about this.

Not sure what the distinction is between not getting enough air and needing more air but it still sounds like it could be a babesia symptom to me. I had this symptom and I will never forget the feeling b/c it was a little frightening. The feeling can come and go or disappear altogether as it did for me. If you are positive for lyme there is a very good chance that this could be related to an infection like babesia b/c most lyme patients are multiply infected. Make sure you mention this to the llmd you end up seeing. Do you have sweats or thigh cramps?