lyme_mom

I am sure they can. My son and daughter tried the ozone sauna which is more uncomfortable b/c it is a steam sauna. The 2k model allows you to sit in it and read a book which might be more appealing to a kid. They probably can't take as much of it as we can though. It seems to be a very easy way to detox that doesn't require ingesting gross stuff :-).

I want to get one to use and we are done with our Lyme treatment (knock on wood). I tried one at my doctor's office and it was awesome. You don't feel hot and you perspire like crazy. It's quite comfortable. Got to b sure it's a good brand and not made with treated wood that off gases. U can buy a tent sauna (where your head sticks out) for 300. I like the wood ones And want one that will hold at least two people so my kids can do it with me or together. I can't remember the names but I think healthmate is the brand I tried at the dr

I doubt it is the bicillin shot causing the herx but it sure seems possible it is herxing from the ivig or related to the sick people around him. My middle son had a more positive Lyme test than others in my family but he was the least sick. Sometimes the more positive you respond to the western blot the better you are handling the infection. Some who are really weakened by the infection do not produce a lot of antibodies to fight it, hence they are leas positive. I would definitely wait on flagyl unless llmd thinks it will help with the latest increase in symptoms. It might actually help but I'd want to be sure the llmd knows the latest info beforehand. Wendy and elizabeth would tell you to detox. We probably could have done more of that during our Lyme treatment. You may know that bartonella can cause neurological and paychological symptoms out Of proportion to the physicAl symptoms like aches and pains. Bartonella is a separate test from Lyme but is also unreliable. It is a clinical diagnosis too.

Sounds to me like Lyme is involved based on the one positive Lyme specific band. I would not pay much attention to the igenex "negative" result because llmds would consider even one lyme specific band evidence of lyme exposure. Was your son's cd57 70? If so that is low. I thought the cd57 doesn't work as well for kids but Wendy posted something (i think) about a really low score being significant. My son's cd57 was very high at the height of his Lyme illness but he was very sick with Lyme so in his case it didnt tell us much. 400 is very high. Wendy is right about coinfections. They usually go hand n hand with Lyme and they can be a bigger problem than Lyme, especially bartonella. I would absolutely see an ilads doctor about Lyme. Anybody else won't have the experience to unravel tick borne infections and get rid of them. Good luck!

Those antibiotics you mention are used to treat lyme, especially Ceftin which is a cyst buster. A change in an antibiotic can produce a setback or herx. Do you know whether he has lyme? If lyme or bartonella is involved the prednisone would not be helpful and could make things worse.

I do not think most llmds would say it exactly like that because it implies that some of us are simply better than others at dealing with the Lyme bacteria and I think that they would say there are many strains of Lyme out there some much worse than others. Most llmds believe lyme is epidemic and that it is way under diagnosed. They suspect Lyme when someone has symptoms that are common with Lyme and the symptoms include almost any medical problem, JUST like syphilis, also a spirochete. have heard people (not llmds) make statements to the effect that we all have Lyme or other bugs but only some of us get sick. That may be true but I really doubt this is the case. I have been healthy my whole life and Lyme really brought me to my knees sort of speak. I am well now thank God but I will never forget what it did to me. I may have gotten sicker because had babesia and didnt know it or the removal of my fillings might have made things worse but i also think it is one strong bug and when u get a coinfection AND Lyme it magnifies the seriousness. I think there is so much about Lyme that we do not know. I personally believe that there are some really virulent strains of Lyme that are much worse than other strains of Lyme and that this accounts for the vastly different experiences some have with Lyme. I think it is A mistake to assume that those who get really sick are just more vulnerable and less healthy and I realize that this is not what the doctor said. I am going off the topic here :-). Lyme can take out the most healthy people and ruin their health. Obviously people who are unhealthy will have a bigger problem with Lyme but this alone cannot explain the differences in severity of illness. The spirochetes are morphing and there are some 300 strains of Lyme. I have also read that the Lyme bacteria gets in your DNA and perhaps that is what this doctor was alluding to too. that is way beyond what I understand though. The most important thing is that the child get well no matter what you call it. If a child gets well with a Lyme or coinfection treatment that is more important than the diagnosis. Clearly many people who have very serious and debilitating health problems get well with a Lyme treatment. Until it happens to you it is hard to believe it is so widespread. Plum island really helped accellerate the spread of Lyme but that is another subject.

No bb means borelia burgforfia (sp?) which is another name for Lyme. I don't know if u r doing enough. My dot blot did two tests: Ifa? And PCR. I got a positive result on one and a negative on the other. My llmd told me that I got a positive on the one that is harder to get a positive result on, whatever that means. I think the dot blot is significant if positive because it finds the bacteria itself, not the antibodies, however a negative does not mean it isn't there. Why wouldn't they give u a bicillin shot? The western blot only tests for Lyme. There are separate tests for babesia and bartonella and they are just as unreliable in terms of often being falsely negative.

Lyme is always a possibility when someone reacts to an antibiotic like this. Could b a die-off of Lyme causing those symptoms. Just something to checkout with igenex testing and/or a consultation with a Lyme specialist (ilads.com).

The elisa is not good-lsbcorp western blot is the best of the worst. Igenex is best because it tests for bands 31 and 34 which the other teats leave out.

Lyme goes crazy around high emfs which u might have in front of a tv. Mold does too. Btw. Just a thought. I would not see an infectious disease doctor after what they are doing with Lyme.

I have so much empathy for all you parents struggling with this everyday b/c we went through something similar when my kids were sick with lyme. Any child who has remaining symptoms and who is on a maintenance dose of antibiotics may have other infections at work. It is worth investigating b/c an antibiotic, even a low dose, could lessen lyme symptoms, for example, but not get rid of lyme (hence a child at 80 percent, not 100 percent). This is true with other infections like mycoplasma, bartonella, babesia etc. (for example azithro has some effect against babesia but it won't get rid of it alone). Shooting for 100 percent is a good idea b/c you might find another "cause" of the symptoms and reach a higher level of health. This is how they treat lyme and the coinfections. A child who has remaining symptoms in the lyme world is suspected of having a lingering infection and treatment continues and is adjusted based on WHAT those symptoms are. Does that make sense? I would see a llmd for an opinion if your child is not yet at 100 percent and you have been working on this a while. You have nothing to lose except the cost of the appointment and any tests.

I did the test when I got sick after stopping my Lyme treatment. I got a bicilpon shot that kills spirochetes and my result was positive.

The famous Lyme pediatrician dr Charles ray jones told me "the eyes do not see what the mind does not understand." I dint think dr k would know if his patients had Lyme because he is not a Lyme soecialist. I think he is way off about Lyme and that with time this will be obvious. It is important to note that augmentin xr is also a cure for Lyme disease so u never know what u r really killing w it.... Cure unknown is a great book and beautifully written. I've read it almost three times because it is packed with good info. However it does not go into great detail about Lyme-bartonella symptoms that can look like pandas symptoms. Weintraub could write an entire book on the neurological signs iot Lyme. Yes u can have Lyme or bartonella or babesia without joint pain or fatigue. U can simply have one or several psychological symptoms too. I am not aware of the symptoms that are uniquely pandas vs Lyme- bartonella, etc. These diseases affect each person differently. In fact a mother may not show signs of Lyme yet pass it to her child in utero. I am sure dr k is a good man and has helped many people but I believe he grossly underestimates the role of Lyme-bartonella-babesia in these kids. The only way to be thorough is to get opinions from pandas and Lyme doctors or see a Lyme doctor like mine who treats a lot of pandas too. I understand dr b is a pandas dr who is also very Lyme aware because he is in Connecticut. Even two Lyme doctors can have differing opinions so second opinions are always a good idea.

I looked for one near Syracuse for a relative and according to ilads there is one in buffalo and one outside NYC. None in syr. There are some in pa too.

BArtonella can cause foot pain, especially in the am on the soles of the feet. I had traveling foit pain that went away with my lyme bartonella treatment. Bartonella can look like PANDAS so I would definitely look into that possibility. Mercury toxicity and other infections can also cause many Lyme or pandas like symptoms too so it's good to cast a wide net to see what you think might be part of the problem. Bartonella can cause neurological symptoms out of proportion to the physical complaints and it is hard to treat and usually requires a combo of antibiotics like rifampin, doxy or amoxicillin and Azithromycin. Bactrin is used too sometimes. A Lyme literate doctor would be a good person to see for a second opinion about whether other infections also play a role. It is very common to have multiple infections that require different medications to treat.

I agree. There is no way to definitively rule out Lyme with any test result, let alone one with an indicative band 34. Some of the sickest Lyme patients do not make antibodies to lyme because they r so sick. I would not go to an infectious disease doctor for an opinion about Lyme, period, unless the doctor is an ilads doctor like the id doctor in dc, Jemsek. If this child is so sick they should be open to a trial Lyme or bartonella treatment if a llmd suspects any of these diseases.

The sudden onset of asthma later in life can be babesia. I couldn't breathe for a week and was told by the dr I have asthma. I knew he was wrong and it went away. I was 44 years kd and never had had any breathing problems before! Several years later I was treated for babesia and realized that the breathing problem was likely babesia. U can have babesia w or without symptoms btw. I agree w Wendy that Lyme can be the root of all evil and I would look for other causes of these symptoms. Eating gf is really healthy but Lyme can cause the hyper response to gluten. Healing the gut is important for anyone who is sick. I have a relative whose depression was blamed on her divorce but she really has lyme disease. Her psychiatrists have no understanding of Lyme and she must go out of state for her Lyme treatment. The shrinks never asked her about her physical symptoms: night sweats, leg pain, vision problems, sound and light sensitivity , etc. She had 18 lyme symptoms in all!!! No they just treat the psychological symptoms with no curiosity about what causes it. It's very frustrating.

I am glad you are getting to the bottom of your child's illness. Lyme is the great imitator and it can present as purely psychological symptoms. I would recommend seeing a llmd because these diseases are diagnosed based on symptoms and negative coinfection results do not necessarily mean there are no coinfections. I would not rely on any doctor to treat myself or my kids for Lyme whonis not an experienced Lyme specialist with a long track record of treating tick borne Infections. Why waste your time experimenting with someone who is not a Lyme expert? We used two llmds because we wanted to be sure we were not missing anything and each of our llmds has unique talents that helped us immensely.My kids were tested by dr jones repeatedly for coinfections because you can turn positive with treatment. My kids never had a positive coinfection result but were treated for suspected bartonella and babesia and they got well. That's really all that matters is that the symptoms go away and the llmds are experts at treating multiple infections. Also we are using the high dose probiotics that Wendy and elizabeth recommend and I wish we had used them all along. They r 50 billion capsules from custom probiotics. During our Lyme treatment we were only taking 4billion. I saw a post yesterday that said dr L doesn't think pandas kids need to worry about yeast which I am shocked to hear. That doesn't make any sense to me . When u r on lots of antibiotics u need to take probiotics to rebuild the gut bacteria. The nutritionist Wendy and Elizabeth use also recommends taking bentonite liquid to detox the gut. My llmd said this is safeand is a good detox agent. We r doing this now to heal our guts so we don't get sick again. We are all well now:-) and no longer on antibiotics. Good luck!

I am glad you are getting to the bottom of your child's illness. Lyme is the great imitator and it can present as purely psychological symptoms. I would recommend seeing a llmd because these diseases are diagnosed based on symptoms and negative coinfection results do not necessarily mean there are no coinfections. I would not rely on any doctor to treat myself or my kids for Lyme whonis not an experienced Lyme specialist with a long track record of treating tick borne Infections. Why waste your time experimenting with someone who is not a Lyme expert? We used two llmds because we wanted to be sure we were not missing anything and each of our llmds has unique talents that helped us immensely.My kids were tested by dr jones repeatedly for coinfections because you can turn positive with treatment. My kids never had a positive coinfection result but were treated for suspected bartonella and babesia and they got well. That's really all that matters is that the symptoms go away and the llmds are experts at treating multiple infections. Also we are using the high dose probiotics that Wendy and elizabeth recommend and I wish we had used them all along. They r 50 billion capsules from custom probiotics. During our Lyme treatment we were only taking 4billion. I saw a post yesterday that said dr L doesn't think pandas kids need to worry about yeast which I am shocked to hear. That doesn't make any sense to me . When u r on lots of antibiotics u need to take probiotics to rebuild the gut bacteria. The nutritionist Wendy and Elizabeth use also recommends taking bentonite liquid to detox the gut. My llmd said this is safeand is a good detox agent. We r doing this now to heal our guts so we don't get sick again. We are all well now:-) and no longer on antibiotics. Good luck!

Is he an ilads doctor? I've never heard if him.what part of Maryland is he in?

When the cd57 is good they suspect coinfections like bartonella, babesia, etc. Hope you feel better soon!

I would be very worried about the swelling too. I would be very careful not to use more steroids than are necessary until you know for sure that other infections are not involved. Do you have anyone near you who can do energetic testing? We have done this often during our lyme treatment. They can test to see which antibiotic is good for you and they can also test for other infections. You don't take the antibiotic. They have you hold a sealed vial of it in your hand. We did this testing with a number of different practitioners and I believe it is very reliable if you have someone who knows how to do it. You will get a lot of advice that this can't be lyme but if I were you I would not want to leave any stone unturned that could lead to a quicker healing for my child. Getting all the right info from the start can save you months and months, even years of agony, not to mention money. Some of these lyme doctors charge a lot but there are some who do not who could give you their expert opinion. When one of my kids was diagnosed with lyme I had them all tested with Igenex b/c I wanted to know sooner, rather than later what we were dealing with in my family. I just wanted to be completely thorough and I took the advice that a wise naturopath gave me to get the whole family tested for lyme via igenex. At the time the rest of us did not have ANY symptoms! To my surprise all three kids and I were positive. Then some of the symptoms started. We think we got it on a camping trip and it had not been long enough to start symptoms at the time of testing. My other two kids were not as sick as any of the kids discussed on this board and yet they had lyme. In fact, their symptoms were quite subtle but obvious to me and the llmd. Tick borne infections are really insidious bugs that take hold in the body and which are hard to test for. By lyme I am referring to all the tick borne bugs not just borellia (like bartonella, babesia, etc.) The good news with lyme is that with the proper treatment you can get well. We all did and one of my kids was quite ill. Also, I was told about some very high potency probiotics by Elizabeth and Wendy and I wish I had started using them a long time ago. The nutritionist who recommended them believes that if the gut isn't working optimally you can't fight these infections. She recommends taking 8 to 10 50 billion capsules a day. I do not see a downside to doing this and we are doing it. They are available from custom probiotics.com. We have used probiotics the entire time but we were taking only 4 billion a day. We have also begun the detox that they are doing with bentonite. I don't have any results yet but if I were starting at the beginning again this is definitely something I would have tried along with tracking down what infections are at work. No matter what is going on with your son having a healthy gut is going to help. Good luck!

My attitude about IND (especially for band 31) is where there is smoke there is fire. My first test was IND for band 31 and later my results were positive. I know others whose IND results were later positive or confirmed in the follow up test for band 31.

There are many tests but most are wrong fifty percent of tye time unless you use igenex which looks for more antibodies to Lyme and more strains of lyme. Dr jones, the famous Lyme specialist told me that a huge percentage of his patients has negative Lyme screening tests and standard western blots. You may already know that so sorry if this is repetitive.