lyme_mom

Absolutely! They lyme docs do this all the time. Sometimes when a person is weakened by lyme they will not produce antibodies to lyme. Going on antibiotics will sometimes help them get a positive result b/c the immune system can mount a defense.

It is very common for whole families to be sick with lyme but for each person to have different symptoms. They believe that husbands and wives can give it to each other and that lyme can be passed from mother to child in utero. This is well documented in the medical literature. I suggest lyme testing for the whole family and not the screening test. Igenex is best (test 188 and 189), Labcorp western blot is the best of the ones covered by insurance. There was a great lyme doctor in NC but he was run out of the state by the NC medical board. They didn't like that he treated people for lyme who didn't always have a positive test. They are clueless down there about this growing epidemic. He now practices in Washington, D.C. There is a virologist in NC who is Ilads-trained and I have spoken with her myself. She seems pretty good. I can send you her name when I find it. Her office is near Camp LeJeune. Check out the lyme symptom checklist on the ilads.org website. Its under "Treatment" and the document was written by Joseph Burrascano, MD. Read Cure Unknown and you will "get" lyme. Pamela Weintraub should get a Pullitzer for this book. It reads like a spy novel and chronicles the stories of many families where everyone was sick with lyme. Lyme is a spirochete like syphilis and can affect every bodily function, including and especially the brain. Bartonella is a lyme related illness that can cause ocd but testing is very unreliable. If any of you have sore soles of the feet or leg cramps you should suspect Bartonella or Babesia. Nightsweats is another symptom that suggests lyme. The list is very long, however, and you should review it and see if you have any of the symptoms. Again, read the book and watch Under Our Skin the documentary. You will really understand what I am talking about after that. lyme mom

I totally agree with PacificMama that steroids are contraindicated if you have an infectious disease like Lyme. Before they learned that Lyme is a bacteria some doctors treated lyme patients with steroids and those patients got terribly ill. This is how they learned so much about what late stage lyme looks like. You absolutely do not want to use steroids unless you are sure that lyme is not involved. It is not easy to know if lyme is involved. I came to this board because my cousin's daughter has symptoms of PANDAS and she wanted me to read about it because there has been a lot of discussion about Lyme Disease and she knew some of it was incorrect. My family has been dealing with this awful disease for almost two years and I know as much about Lyme as most of you do about PANDAS. As I read many of the posts on this site it is clear to me that many of these children have Lyme-like symptoms and they are not being evaluated by Lyme knowledgeable physicians nor are many of them getting the best lyme blood tests. Nothing against the PANDAS doctors but they cannot be experts at everything and tick-borne illnesses is a speciality that takes a lot of time and experience. Let me just say this again: There is NO reliable blood test for Lyme. I have said this over and over on this board and quite a few of you have listened, contacted me and sought better testing from the Igenex Lab. Some of you have learned that you are dealing with lyme too and this is very important info. If you want to be sure that your child does not have a Lyme or other tick-borne disease infection you must be evaluated by a "lyme-literate" doctor. It would help to have the lyme test done by the best lab as well (igenex in california). I would not rely on any doctor who is not Ilads-trained (ilads.org) to tell me whether or not my child has lyme and I would travel as far as is necessary to find an ilads doctor to evaluate my child (and I have done this repeatedly for almost two years). I feel so bad for what all of you are going through and I know how hard it is to have a sick child. Getting my kids well has been my focus for almost two years. I only offer this advice, as PacificMama and others who understand Lyme do, so that you do not let too much time go by before making this critical evaluation. The sooner you start to treat lyme the better the outcome. My cousin whose child was diagnosed with PANDAS sought better testing and consulted with a Lyme literate doctor. This doctor suspected lyme and/or coinfections and the Igenex test and a Babesia test confirmed that this child also has Lyme and Babesia in addition to strept issues. This is critical information that will help her get well faster! You need to be on the right drugs to kill these microbes. For example, Babesia can cause mental symptoms and you need malaria medication to kill it. She was lucky that she got a positive test b/c Babesia testing is also very unreliable. As PacificMama said in an earlier post, the most knowledgeable pediatrician in the world for Lyme told her that PANDAS symptoms can be caused by lyme/coinfections. He told me the same thing and said that Bartonella (a lyme coninfection) can cause these symptoms. He knows what he is talking about, believe me. He has treated the sickest of the sick kids for forty years and has seen over 15,000 patients! My other doctor who is a lyme specialist treats many children with PANDAS symptoms too and he told me that many of these children with PANDAS symptoms have lyme infections. I think it is very interesting that Dr. T has noticed that 80 percent of his patients are positive for band 41. He doesn't say what test he uses but one has to wonder if these children had the Igenex lyme test how many would actually be positive for lyme? The Igenex test is better than the tests covered by insurance b/c it includes testing for the two most significant antibody bands for Lyme, numbers 31 and 34. All other tests do not test for these lyme antibody bands. If your child has not had this test or one from Clongen Labs in MD, you can't know if they are negative for lyme. One last note, the top lyme pediatrician I referred to above believes that any child with lyme symptoms and even one lyme-specific antibody should be treated for lyme. He and my other doctor do not rely on the tests. If the patients has lyme symptoms they treat. He has told me that he treats the patient, not the test result. Please take this information to heart because it could save you a lot of grief down the road if you have lyme/coinfections in your family. Lyme Mom

Dr. T., Do you use the Igenex Labs for lyme testing? If not, what lab do you use? Lyme Mom

17 v 1! Really!? I'd call that a little more than "significant". That is extremely interesting and the article mentions other infections like Borrelia Burgdorferi, which is the real name for Lyme Disease. I have read that 60 percent of lyme patients are "co-infected" with Mycoplasma P. The problem is the tests for Lyme are so unreliable that you could have it and not know it. I am pretty sure that the drugs used to treat lyme, treat Mycoplasma, but not sure if it works the other way around. Having multiple infections apparently makes it hard to get rid of lyme and the same is probably true with respect to strept, as you mentioned. When my son's recent labs came back and he was negative for Lyme, I wondered how accurate that might be. I've read your posts about how to go about testing for Lyme through different labs. I pray to not have dig for more co-infections after treating mycoplasma. I spent the entire day looking for literature on possible healing regressions (herx reactions) in asymptomatic patients when starting antibiotics to treat for mycoplasma. Not an easy task. He had a bad cough (most dry) shortly after waking up. It was not there yesterday. It triggered every vomit fear in him and was the catalyst to a huge meltdown and a day not nearly as beautiful as yesterday's. Now he's balking at taking the biaxin. I can't take much more. I'm so sorry that you and your son have to go through this. It is awful. I know how hard it is to get a child to take the medicine. I did a little research and found an article on the Canlyme website that says that biaxin and azithromycin can be used to treat lyme. That is good b/c then you don't need to worry about whether the lyme test was falsely negative. It might be worth retesting him after a month of antibiotics b/c it can turn a test positive by giving your immune system a chance to fight back. I also found this interesting article about the Mycoplasmas written by Drs Garth and Nancy Nicolson. http://www.rense.com/general7/microplasm.htm. Apparently their daughter returned from the Gulf very sick and got them sick. Being research doctors they attacked the problem and discovered that they were infected with a form of mycoplasma called mycoplasma fermentans. They later linked this infection to the spouses and children of gulf war vets. This is a different type of mycoplasma but they discuss all the mycoplasmas as if they have some of the same properties. They say that the treatment can be difficult (which may mean herxes) and it is long like the treatment for lyme disease. The gist of the article is that these mystery illnesses are not caused by just one micro-organism but multiple complex infections. Good luck and hang in there! If he is herxing the good news is that he is killing something and he will get better!

17 v 1! Really!? I'd call that a little more than "significant". That is extremely interesting and the article mentions other infections like Borrelia Burgdorferi, which is the real name for Lyme Disease. I have read that 60 percent of lyme patients are "co-infected" with Mycoplasma P. The problem is the tests for Lyme are so unreliable that you could have it and not know it. I am pretty sure that the drugs used to treat lyme, treat Mycoplasma, but not sure if it works the other way around. Having multiple infections apparently makes it hard to get rid of lyme and the same is probably true with respect to strept, as you mentioned.

I think they all know something subconsciously but often the ocd clouds it with so much other static. My son is the the most intuitive person that I know. I haven't done a feng shui consult but I borrowed a body voltage meter and measured the emfs in every bed in our house and I highly recommend giving it a try. My son who has been dealing with Lyme Disease for 18 months was sleeping in the worst bed in the house. We turned the circuit off to his room, gave him a battery powered light and he started getting a lot better. Within a month of turning off the power to his room he showed signs that he is finally killing Bartonella, another tick illness. He got a Bartonella rash which we believe is part of the die off of Bartonella. Apparently Lyme spirochetes go crazy with high emfs in the laboratory so sleeping in a high emf area would be like sleeping in a lyme incubator. The same is apparently true for mold. I also turned of the cordless phone. The 900 meghurz cordless phones are the best cordless phones b/c they only broadcast when you use them, not all the time. Can't find one to buy though. Safe Technologies sells meters but I was told Radio Shack sells a multi meter (811-32) that you can use to measure the voltages in your home (it is around $50). Haven't tried it yet myself b/c I already took my measurements with a more expensive meter. Anyone who is sick could benefit from reduced emfs. They sell nets like mosquito nets that you can put over a bed that repels emfs and radio waves from cell towers. Haven't tried that yet but am thinking it might be worth it given the success of turning of the power. lyme

DUT, Just read the thread and you are absolutely right! Lyme cycles every four weeks, it makes your legs or knees hurt and can cause swollen joints. Igenex is the preferred lab for the test but you must see an ilads trained specialist, NOT an infectious disease doctor, if you really want to be SURE it isn't lyme. I would not see an infectious disease doc for lyme ever. Lyme Mom

Hi ajcire, The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like. Lyme Mom ajcire, That is what really makes this confusing. Its hard to know especially since the doctors who treat PANDAS are not necessarily knowledgeable about tick borne illnesses. I would go to a an ilads-trained lyme doctor to rule out lyme, not a doctor who doesn't treat LD everyday. There are tons of doctors out there who will tell you that there is no lyme but as a mother I would want to know what the doctors who see it everyday have to say. If LD is even a possibility I would test with Igenex b/c you don't want to look back in two years and say I should have asked that question earlier so that I could have started the right treatment sooner. LD is just so widespread and one of my doctors told me that a lot of his pandas patients have LD.I haven't read all your posts to know what symptoms your child has but you could look at the list that I posted from the ilads.org website and see how many your child may have that are also Lyme symptoms. Lyme Mom

Iboll, I hesitate to write but because I sound like a broken record, but you should know that exacerbations of symptoms while on antibiotics is common with Lyme Disease. It is considered a reaction by the body to the die off of the microorganism (b/c toxins are released when the spirochete is killed). Lyme specialists consider temporary worsening of symptoms after a medication change to be a good sign and they do not stop the antibiotics unless it keeps up for a long time. Has your son had a lyme test from Igenex Labs in California or been evaluated by a lyme-literate doctor (ilads-trained)? I would definitely do that b/c the sooner you know if lyme is involved, the better the outcome. Lyme Mom Hi Lyme Mom, Please don't ever hesitate to reply to me. I need all the information I can get. Is Lyme disease something that could make someone ill like my son for many years? My son is autistic, diagnosed at age 5, but showed symptoms earlier. However, his autism is "atypical" according to the doctors, which is leading some of us to believe that PANDAS is involved. He tests positive for strep on the rapid strep test each time. Are Lyme and Strep closely related? hi Iboll, Sorry that I just noticed this message from you. It is easy to lose track on this site! Lyme and strep are both infections that can affect the brain and can cause almost any kind of psychological symptom as well as physical symptoms. It is quite common for someone to have it for years and not be diagnosed. As you know they don't really know what causes symptoms of autism but they believe it could be caused by any number of things and it is different for each child. For some heavy metal toxicity or exposure to high emfs could be a factor. In others it could be a latent infection, virus or gut issue that is affecting the brain, etc. The fact that your son reacted to the antibiotics in a negative way would make me think it was killing something. One of my holistic MDs told me that a lot of children with autism have Lyme Disease. Another holistic MD told me that a lot of kids with PANDAS also have LD. It is worth reading up on LD and getting your son tested by Igenex to see if he shows any exposure. Does he have any other physical symptoms that are on the list I posted? You can email me offline if you want and I will respond faster. Lyme Mom

Hi ajcire, The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like. Lyme Mom

Joan, You are right that there are a lot of false negatives for LD (not false positives as some would think). The best test for LD is the Igenex Western blot (igg as well as igm-test 188 and 189). It costs around 200 for both and your doctor must order it. There is a form on the Igenex website for ordering it. This test will show all known bands for LD including bands 31 and 34, which the other tests do not test for. Y The makers of the other tests that most doctors use do not include bands 31 and 34 b/c the Lyme vaccine was to be based on these antibodies. However the vaccine was pulled off the market in 2001 and they never went back and added those bands to the lyme tests, which is not good for patients. A patient could be positive for bands 31 and 34 but get a negative result b/c the test isn't testing for those bands. There are other reasons why the test can be a false negative. A person who has had LD so long may no longer make antibodies to LD b/c they are so sick. This does not mean they do not have LD. The diagnosis is a clinical diagnosis and even the CDC website says that. Often they will treat someone with LD symptoms and then retest them and they will turn positive after a course of antibiotics. This is why it is so important to see a specialist who is ilads-trained (not necessarily an infectious disease specialist). The CDC website says to start with an ELISA test (worst lyme test) and then go to a Western blot if that is positive. All I can say is that 40% of the patients at Dr. Charles Ray Jones' pediatric lyme practice in New Haven had negative ELISA tests but were sick with LD! So if you want to know and you want to catch it early do not rely on an ELISA or any other LD test that is not from IGENEX. Dr. Jones also ran the following other tests for coinfections on my kids in addition to the Igenex Western blots: Specialty Labs' Bartonella Henselae Igg and igm abs, Igenex' babesia fish (rna) and babesia duncani antibody panel, mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, and E chaffeenis-hme (monocytic) igg and igm. The presence of any of these other infections complicates the Lyme Disease treatment. Dr. Jones told me that Bartonella can cause ocd symptoms. My other lyme doctor told me that many of his patients with PANDAS also have LD. If your doctor pushes back just tell him or her that any child with PANDAS symptoms certainly deserves a proper test for LD b/c the symptoms of PANDAS could also be lyme symptoms. The sooner it is treated the better the outcome for the child. Good luck! Go to Ilads.org for the best lyme info. Lyme Mom

Steroids can make matters worse with Lyme b/c it lowers your immune response and helps the lyme. It is contraindicated with Lyme Disease.

Vickie, My younger two kids took amoxicillin and azithromycin. My 12 year old takes doryx (slow release doxy) and azithro (plus a homeopathic thing called spiro that kills lyme and the coinfections) for lyme/bartonella. He is getting a lot of pains from the die off so it seems to be working. This doesn't mean that a child wouldn't experience a die off with another antibiotic. It is just that amoxicillin and doxy and the preferred antibiotics for getting rid of lyme. They also use bactrim, rifampin or Mepron depending on what other coinfections are suspected. It really depends on the child's symptoms and age and it changes depending on what lyme specialists find works the best. That is why it is so important to see an ilads trained doctor who goes to the conferences and is up on all the latest thinking about lyme and other tick illnesses. Your average doctor has no time for this and often relies on outdated and inaccurate lyme info. If only my son had been properly diagnosed by my pediatrician he would not have had to go through the agony of this long term treatment. Thats why I urge anyone with a child with possible lyme symptoms to get on it immediately so you don't have to go through what we are going through. Lyme Mom

Iboll, I hesitate to write but because I sound like a broken record, but you should know that exacerbations of symptoms while on antibiotics is common with Lyme Disease. It is considered a reaction by the body to the die off of the microorganism (b/c toxins are released when the spirochete is killed). Lyme specialists consider temporary worsening of symptoms after a medication change to be a good sign and they do not stop the antibiotics unless it keeps up for a long time. Has your son had a lyme test from Igenex Labs in California or been evaluated by a lyme-literate doctor (ilads-trained)? I would definitely do that b/c the sooner you know if lyme is involved, the better the outcome. Lyme Mom

Debbie, If your son had a positive lyme test it was likely not a false positive. Lyme doctors would treat him immediately b/c he has symptoms and they would not run a second test as your doctor is doing. Clearly this doctor does not know enough about Lyme Disease. I would run to the nearest Lyme specialist (see ilads.org). Do not rely on a doctor who does not treat lyme everyday. They can't possibly know all you need to know about how to treat lyme and the coinfections. You need to read Cure Unknown and you will understand why I am so emphatic about this. Lyme is really serious and you want to totally get rid of it as soon as possible. You are right about steroids being bad for lyme. They lower your immune response. Make sure they test for Bartonella b/c my doctor said that it can cause pandas like symptoms and other neurological symptoms too. Also, one lyme specialist told me that ivig on a patient with lyme is like throwing a glass of water in the ocean. You need to get rid of lyme before it can do any good. Lyme Mom

I am interested in anyone's response as well.... Will dr K look into this if am having a phone consult in 2weeks? Should i just wait for him or should go for one of these tests. We have also lived in PA for several years and i have found tics on him.. I think deer are the state animal!!!! Hi Fixit, My family just got the igenex igg and igm tests and did not do the rest of the lyme panel. We saw evidence of Lyme with igg and igm tests so there was no need to do the full package. Also there is a follow up test that you can run if your Western blot comes back with any equivocal bands. This means that something is there but it isn't exactly positive (it isn't exactly negative either). This borderline result can be run through the computer again (for a fee) and compared to their database of positives. From this they can tell if you are band 31 positive. Not sure exactly how it works. They did this for me b/c my test was actually negative but I had "indeterminate" bands. The followup test was positive. A few weeks later I started to get symptoms so I think I was tested too early. It is great that you are doing the Igenex test! I think that is extremely wise to do that so you know what you are dealing with. You can always add those other tests if you need to. Good luck!

Michael, Good point about the doctors not specializing in everything. I would think that the Pandas doctors would need to be sure that they are not missing lyme b/c it is such an epidemic. My lyme MD in DC treats both lyme and pandas. He and his assistant, a naturopath, also treat children with autism and other complicated health problems. He said that a lot of the kids with pandas also have lyme and they treat them for both infections simultaneously (bicillin shots once a month and the lyme antibiotics). He said that taking antibiotics will not affect the lyme test. Also that energetic testing really seems to be accurate because we did it a number of times. Lyme Mom

T.Mom, My doctor and I discussed c difficile a while ago and he said that he has tons of patients on long term antibiotics and they never get that b/c they take tons of probiotics and they watch for yeast overgrowth. He checks your tongue each visit to make sure it isn't getting whiteish, which would indicate a yeast problem.

Thanks. His dose is 1.2million. Maybe not high enough. But this is only dose doctor could give. CZL, I am almost positive that he told me that is the dose they use and he said they are having a lot of success. Lyme Mom

Hi lyme mom, Thanks. Please once you have chance to see your doctor, ask about benzathine penicillin ( is it same as bicillin??) shot monthly for PANDAS. Hi CZL, I just googled it and it looks like they are two names for the same thing. He told me that it is a very high dose (like over a million something). lyme mom

I heard about that company but haven't had time to research their website yet. I will look into it. thanks, lyme mom

Hi Michael, Just send Barbara an email and she will send you a name near your town. Your doctor needs to fill out the igenex form that you can download from their website. You can either do the complete lyme workup that cost 450 or so or just the igg and igm western blots which are tests 188 and 189. Your doctor can order blood to be drawn for the igenex test and give you the kit to take to labcorp or wherever you get blood drawn. Lyme docs do it in their office. My doc is in DC and MD and he is excellent. Dr. Paul Beals. He sees a lot of people long distance. I saw him this morning and he told me that a lot of his pandas patients also have lyme disease. If a patient has both they use the lyme drugs along with the once monthly bicillin shots. Lyme Mom

Michael, Yes the ELISA was designed for cdc reporting and should not be used to diagnose LD. You have to be glowing with lyme to get a positive and by then it is a little late. I'd get the labcorp western blot serum test. If that doesn't show lyme antibodies have your doc order the igenex igg and igm western blots. There are several other tests they can run too which increase the sensitivity but it costs about 450 to do them all. Its 200 for the igg and igm tests which is what we did. My sister and my neighbor got a positive labcorp test and didn't need to do the igenex. None of us have been given biaxin for lyme nor have any of the people I know. That doesn't mean it isn't used but there are specific antibiotics that are considered best for lyme. All I can tell you is that doxycyclene 400mg/day plus either azithromycin (500/day) or Ceftin (500mg twice a day) is what the adults I know are getting for lyme. If you have other tick illness like bartonella (which causes neurological problems, sore heels, calf pain i think) then you would also get rifampin. If you have babesia (fatigue, thigh cramps, nightsweats, chest pain, air hunger, sore ribs) you would also get Mepron or Bactrim. I am not a doctor though but this has been our experience. Lyme Mom

Hi Faith, I never used Labcorp so I don't have one to look at but I do know it is called a serum western blot, not a western blot reflux. It should list all the lyme antibodies and give a result for each that is either present or not present. Certain antibodies are more important than others (they only appear when exposed to lyme). Labcorp's test will not include results for bands 31 and 34 but igenex' test will. Dr Joseph Burrascano gives you a complete guide to lyme and the infections on the ilads webite. I am pasting an excerpt below regarding the tests and which antibodies are lyme-specific and how to know if you are positive. "Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp , 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." He also says that if you have had it a long time you may have stopped producing antibodies. Many patients turn positive after treatment he says. "An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic testing. Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a successfully treated infection will the serologic response begin to diminish. The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery. More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra- articular steroids." lyme mom