lyme_mom

Every couple months. Milk thistle is helpful for elevated liver enzymes. I guess it detoxes it.

We haven't tried charcoal but have tried Chlorella. My kids don't like the smell. Do they taste the charcoal? Does that detox mercury too? You are right about there being nothing worse than having a sick child. I am also very concerned by how many sick children there are. I worry that there will be so many very sick kids with lyme in a few years because not enough people know that lyme is easy to get and that you must be alert to early symptoms in order to avoid a long illness and treatment. Glad you are seeing progress finally! The charcoal doesn't have any taste. It's in a capsule form and it's black powder inside. It looks odd, but there is no taste or smell. I was told the charcoal will draw everything out. Including any medicine. That's why they say take it 3 hours after you take any abx so they have a chance to be absorbed into the bloodstream. Charcoal has been a miracle for us. I also have Lyme and I take it during herx's or whenever I have an upset stomach. It also works like a charm on food poisoning! We were told that part of the reason for nausea is because when the bacteria die off, they end up in your stomach so your body can rid it, when too much builds up it can cause nausea. Obviously the abx cause it too though. Thanks I will try it sometime. I have some liquid for detoxing mercury that I am supposed to be taking but I always forget. It is DPMS I think and it is kind of gross. I am supposed to take it twice a week but I always forget. There is no way I can get my kids to take it either :-)!

Another member had this question about how long to wait to test and I asked my llmd. He said to wait one month.

If a patient has Bells Palsy apparently you give the patient two antibiotics to keep it from spreading (in my son's case he was put on doxycyclene at half the right dose and they did not prescribe ceftin which helps halt the lyme.) The lyme doctor put him on these medications immediately and Iater got a new pediatrician (not ilads) who told me that he might not have needed a picc line if he had been given ceftin AND the right dose of doxy right away.

We haven't tried charcoal but have tried Chlorella. My kids don't like the smell. Do they taste the charcoal? Does that detox mercury too? You are right about there being nothing worse than having a sick child. I am also very concerned by how many sick children there are. I worry that there will be so many very sick kids with lyme in a few years because not enough people know that lyme is easy to get and that you must be alert to early symptoms in order to avoid a long illness and treatment. Glad you are seeing progress finally!

When my son was diagnosed with Lyme Disease over two years ago I knew we had a long road ahead of us. I was not prepared, however, for the ignorance about and at times contempt for Lyme Disease that we would face from doctors along the way. My son's case was clear cut. He passed all lyme tests with flying colors because he had been misdiagnosed for at least a year and he was really sick by the time he got Bells Palsy. I got some great advice the week he was diagnosed leading us to seek an opinion from a lyme literate doctor immediately. I also I read Cure Unknown by Pamela Weintraub within two weeks of his diagnosis and therefore had some idea about the war going on between doctors regarding Lyme Disease. It was still shocking when my own pediatrician who I believed was a good doctor up until this point, took my son's illness lightly, didn't return my calls and, I later learned, prescribed the wrong dose and type of antibiotics for neurological lyme (which Bells Palsy indicates). This pediatrician even joked that Lyme Disease was the "new Gulf War Illness" as if he did not believe it existed. Then we had to deal with our local hospital that refused to fill my lyme doctor's order for a Picc line without first reinvestigating whether my son really had Lyme through a risky and unnecessary spinal tap. My son's Elisa score was 4 times the positive number and his western blot was positive as well. In fact, the emergency room doctor who diagnosed my son with Lyme Disease told us that in almost all cases Bells Palsy in a child is caused by Lyme Disease so there was no reason to doubt the diagnosis. Then there was the neurologist at Children's who told me and my then ten year old son that his facial palsy would never go away and chided us for going to a lyme literate doctor. He was downright hostile right in front of my sick child! It was very stressful and the last thing we needed at that point. We never went back. Why would we? He offered us nothing and the lyme doctors told us he would get better and the palsy would go away. They were right and he was wrong fortunately. I am glad there is now a board where parents can discuss their children's lyme treatment. I hope that parents whose children were treated and cured of Lyme Disease will also join the board to share their stories and advice. I am sure some day those doctors who criticize the lyme doctors will have a family member sick with Lyme and they will need their help b/c 3 weeks of antibiotics is almost never enough. Lyme is such an epidemic that I worry that there will be so many sick kids in the future unless something is done to prevent Lyme Disease and doctors start treating Lyme with the seriousness it deserves. My son's palsy is gone and he is almost completely symptom free thanks to several courageous lyme specialists. Until the lyme wars are over parents really need to help each other navigate the "lymelands" as Pamela Weintraub calls them.

I don't think that is a problem to take those supplements while being treated for lyme. My llmd who is an integrative physician uses Myers Cocktail IVs for lyme patients and they contain zinc, lots of vitamin C, lots of B and I think magnesium. Lyme depletes magnesium I read.

You can get a cd57 test from labcorp and find out pretty quickly if lyme is likely for you. It doesn't work for kids. Ilads or a local lyme group is a good way to find a good lyme doctor. We did tests 188 and 189 through igenex for 200. Thats a good place to start. A more complete lyme test is available from Igenex for more money but you might get the info you are looking for with the igg and igm antibody tests. To save money you might want to get the cd57 test for yourself (which insurance should cover) and get igenex tests for the kids and go from there. The cd57 test will not show whether coinfections are involved.

Well if it is said that a pan/pit kid reacts by just being exposed to strep/illness wouldn't that be the same thing... also, long story...i saw it on 20/20 or some show 4-6 years ago... woman has dog since it was a puppy..dog is about 4-7...she goes to do dishes as usual...dog starts to bite her calf... after about a week or so of this...she puts dog in other area to do dishes...on occasion forgets, and dog bites at calf... about 10 months later, maybe more....she has cancer right where the dog was biting.....they use dogs for finding cancer and for epiliptic patients...they smell it coming on... it all seems the same to me lyme mom...the bold sentence seems concerning to me....what is a person to do in that case????...especially if in some cases i've heard it takes years to resolve, when you do know what is going on The dog sniffing the cancer is a little different from the muscle testing but it is true that they can do that and really cool. They have mold sniffing dogs too. My sister had someone come test her house for mold and they brought a mold sniffing dog! Animals have a sixth sense. I don't know how to answer the other part of your question... about whether the muscle testing would work with a child with PANDAS because they would react to multiple infections whether they have them or not.

Well if it is said that a pan/pit kid reacts by just being exposed to strep/illness wouldn't that be the same thing... also, long story...i saw it on 20/20 or some show 4-6 years ago... woman has dog since it was a puppy..dog is about 4-7...she goes to do dishes as usual...dog starts to bite her calf... after about a week or so of this...she puts dog in other area to do dishes...on occasion forgets, and dog bites at calf... about 10 months later, maybe more....she has cancer right where the dog was biting.....they use dogs for finding cancer and for epiliptic patients...they smell it coming on... it all seems the same to me lyme mom...the bold sentence seems concerning to me....what is a person to do in that case????...especially if in some cases i've heard it takes years to resolve, when you do know what is going on I was responding to the concern that a lyme doctor would just treat without knowing whether or not the person has lyme. Once antibiotics are started a person will either improve or temporarily worsen (herx) and that would be a sign that the treatment is working. If absolutely nothing happens then they might try another antibiotic combination. If nothing happens they would think that lyme is not involved. If the patient reacts, which they usually do in some way, they will continue to treat until all symptoms resolve. I just meant that they are not careless about who they treat :-).

I think many experienced lyme doctors would consider that pretty positive for lyme, if clinical symptoms looked like lyme. All I had was 39IND and 41+ and lyme treatment was very helpful for me. I agree. My first lyme test was igenex negative but I had indeterminate bands for 31 and maybe one other. We did the band 31 confirmation test (a follow up to the western blot through igenex) and it came back positive. I later was tested using the lyme dot blot urine test and was positive. Two of my kids were also very borderline so I believe where there is smoke there is fire. Indeterminate bands mean something was there, it just wasn't strong. Think of a thin sharpie vs a thick one on the test printout. That's not something to relax about. Also, the four week cycle is not always the case so I would not put too much emphasis on that. I never noticed a particular pattern to our family's symptoms but we all got better with the treatment. As for the steroids not causing an immediate downturn in the patient, a patient can respond to the steroids in the short term but still be sick with lyme and/or get much sicker later.

I agree with Michael. Muscle Testing or energetic testing is very reliable and can be another way to guide the practitioner as to what the most significant infection or other problem is. It can also help desensitize a patient to an antibiotic that is stressing them (we did this numerous times throughout the lyme treatment). It may look like voodoo (in fact we call it that jokingly sometimes) but it really works. Its based on the principle of a lie detector test. There are measurable responses to stimuli that a person has if you are tuned into them. That is what energetic testing is all about. We did energetic testing numerous times and got the same results from different energetic tests by different practitioners. Most illnesses are clinically diagnosed. Look at ADD. Its based on symptoms and they dole out meds rather freely for that yet they almost never try to determine what the CAUSE of the ADD is. If you treat for lyme and the patient gets well it is possible that there was some other as yet undiscovered microbe or strain of lyme that was treated but I would think anyone who gets well would simply be glad they are well. I am just a lyme patient but after two years of dealing with Lyme I can tell you that the signs are pretty obvious even to me so a lyme specialist who has many years of experience treating lyme really knows what it looks like. A physical exam is always included and there are tell-tale physical signs in addition to the symptoms. Another point is that a lyme doctor will not continue to treat a patient for lyme who shows no clinical response to the treatment. They would start treatment and then retest for lyme after a month or two or longer, giving the immune system a chance to mount a defense. For adults with Lyme the labcorp cd57 test is a quick way to check on the status of the infection. A low score is indicative of an active lyme infection. This test does not work for kids apparently.

Yes. Dr. Jones will tell you when you are done and what symptoms do not have anything to do with Lyme. He takes pride in knowing the difference and he does not diagnose everyone with Lyme. He usually sees people when they have exhausted all other options so the likelihood of Lyme is much higher.

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim. It caused really bad herxes for him. He felt like he was dying and even had trouble walking a couple of times. He took it for about five weekends per Dr. Jones. It may have helped or switching antibiotics may have helped (we made several changes at once). He is better now fortunately but still on antibiotics. Hopefully he will be able to stop soon. I will pm you.

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

The only way to be sure is to have an ilads doctor evaluate him and to even do a trial treatment. If it is possible that your son has lyme it could be the missing link. You can skip the igenex test and go right to an ilads doctor too. Tell him you don't want to do expensive testing and see what he or she says. The full lyme panel is supposed to be the most reliable test for lyme (it costs 3 o 400 dollars). The igm and igg lyme panels (200) are much more reliable than the ones covered by insurance but even those tests can be wrong. Some people do not make antibodies to lyme so antibody testing doesn't work. Dr. Jones told me that none of the tests for lyme are totally reliable. Its a clinical diagnosis in the end and a trial treatment would tell you if it works pretty soon. What are his symptoms?

Good thing you figured this out. The mouth asymmetry could have turned into Bells Palsy, which my son had. WIth the right treatment you should avoid this. Most doctors are totally clueless about how to read those tests. It is outrageous but there is a war going on between doctors about whether chronic lyme even exists so it makes it very confusing for the non lyme expert. Infectious Disease Doctors are the wrong kind of doctor to see for lyme if they are subscribing to the Infectious Disease Society's guidelines for the diagnosis and treatment of Lyme (some are independent thinkers who understand lyme). Those ISDA guidelines are responsible for delaying the diagnosis and treatment of so many people like your child and it is an outrage!

I'm so glad to hear that your son's problems have been found & are now able to be addressed! I have been wondering about the strep antibodies vs. persistent strep in the body myself. I had read somewhere previously that strep can form a biofilm to adhere itself to a mucosal wall & protect itself from the immune system as well as other competing microbes. We have had some up & down experiences with dietary approaches that have made me suspect that something is being affected by it (something besides yeast/candida). I know at this point there are some doctors experimenting with protocols to get rid of biofilm bugs, but I have no idea which doctors or how well their approaches are working. Anyone here know? Lyme spirochetes create a biofilm in the body and flagyl, tindamax or even anti-yeast medication like diflucan can be used to bust up the cysts so that the microbe can be killed.

If she hasn't had the cd57 test by Labcorp she should get it. A low score is an indication of an active lyme infection. It doesn't show whether a coinfection like bartonella is involved though.

I probably sound like a broken record but I think you should know that the description of the pains described in this thread could just as easily be found on a Lyme blog. The danger in assuming that migratory joint pain and muscle pain is caused by an auto-immunity issue related to PANDAS is that you could miss an active lyme disease infection that is treatable with the right combination and dose of antibiotics. I urge anyone whose child has these symptoms to keep looking for other explanations for the symptoms such as Lyme Disease, Bartonella or Babesia. In fact, any patient with migratory joint or muscle pain should consider a trial treatment by a tick-borne disease specialist to see if it helps regardless of what Lyme/coinfection blood tests say (because they are so unreliable). A trial treatment through a lyme-literate doctor (ilads.org) is not very risky (as long as probiotics are used) and is the best way to know if these symptoms can be eliminated.

Her friend probably had Lyme Disease and didn't know it. People can say the dumbest things. Its a real eye opener when you have a sick child.

That's how the coinfections are usually diagnosed- clinically. That's one of the many frustrating things about Lyme/coinfections. There are currently no reliable tests for coinfections and even the igenex test for lyme can be wrong.. There are so many strains of Lyme and coinfections that you could get a negative result and still have it. The only other disease that I know of that Mepron treats is malaria. A knowledgeable Lyme doc would be able to ascertain if the treatment is working within a month or two. These diseases are so common especially if you know you have one tickborne illness (which I realize you do not know). I was treated for Lyme for five months, went off the antibiotics because I was better and got very, very Sick within two months. My doctor suspected babesia and treated me for that. I had some thigh cramps and severe fatigue(another sign of babesia). I felt worse initially as it killed the bugs but then I finally got better. I kind of wished we had hit everything from the beginning so I didn't have to go through what I went through. I was skeptical initially too- how can they assume all of these diseases are present but I learned that nobody has just Lyme anymore. You have to have faith that the Lyme doctor knows what he is doing or get a second opinion as you are doing. Once I became very knowledgeablesbout the symptoms by reading all kinds of Lyme books I realized I had babesia symptoms for several years: fatigue that would come and go which I assumed was just how a busy mother of three was supposed to feel ( wrong). I also has a week long episode where I couldn't get enough air several years earlier. My doctor told me i had asthma but I knew that wasn't right. Never had a breathing problem my whole life! In retrospect it was spring and I was gardening a lot. It must have been when I got babesia. It went awY but years later when I got Lyme it made me much sicker (coinfections do that). Usually they don't start you with tindamax especially if they are not sure whether you have Lyme. Amoxicillin, rifampin, mepron, bactrim, doxy, are some if the drugs they use and they are considered safe. I will be very interested to hear what dr jones says!

Good then you will one soon. My kids were always negative too but they had coinfections because they responded to the treatment. Let me know how you like him!

Apparently low magnesium can cause leg cramps too, although what you describe sounds pretty intense- more than a magnesium deficiency. Thigh cramps are a sign of babesia and calf cramps are a sign of bartonella. I think dr jones will know what to do. When do you go?

We've tested for lots of things but I don't think that. I just read up a little on immune complexes but I don't quite get it. Do you have anything for me to read up on that is pretty easy to understand that shows what that is all about? I'm guessing a trip back to our immunologist may be in order but our neurologist is doing a lot of immune testing and is geting ready to concentrate on PANDAS/PITANDS cases. Maybe this is something he would be interested in looking into. Susan I think you wil be glad you saw dr jones and you never know how long he will be around to give you his advice at his age and with the wAy the Connecticut medical board is trying to close his doors. He does a ton of testing including for a number of immune things which I don't even understand. It's always good to get a second opinion even from a second Lyme doctor. We did that-using dr jones and our local ilads doctor and we had the peace of mind that we were doing all we could. They pretty much agreed about the diagnosis and treatment. Jones believes in testing and retesting for Lyme and coinfections throughout the treatment because a negative coinfection or Lyme test can turn positive after treatment. The symptoms are the most important factor they consider along with the tests. He uses igenex, specialty labs in California and quest for coinfecton testing. As pacificmama has posted, ilads doctors are very knowledgeable about Many types of infections. Does your daughter have leg pain? If so, what kind?