lyme_mom

I would be very interested in checking that out - thanks! Sounds really good and lots of sunshine :-). If nothing else I know some cancer patients who would be interested! Here is a link www.gerson.org I will PM you more specifics, but I thought of it because many of the things they do for cancer, I've heard of being done for Lyme patients too (coffee enemas, vitamin infusions, etc) thanks so much. It looks great. I sent this to a friend with cancer who is pursuing alternative treatments.

Thats it...really, really deep bone pain in the thighs. It's SO painful! I'm having exreme difficulty sitting & standing...what did you take for the pain??? thigh pain is a sign of babesia, calf pain and sore soles of the feet a sign of bartonella.

I would be very interested in checking that out - thanks! Sounds really good and lots of sunshine :-). If nothing else I know some cancer patients who would be interested!

Michael thanks for the name-I will check into it. Dabel I agree -if this were cancer it would be a whole different story. Of course insurance won't pay for holistic cancer treatment :-( either. The psychiatric symptoms are the worst because it interferes with the patient being able to stay on the treatmen plan. Many kids don't want to take their mess either and that makes it even scarier.

I have an adult relative who is extremely ill due to lyme/coinfections, heavy metals, gut issues, etc. She is not able to manage her own treatment and in fact undermines her own treatment by not taking her meds, etc. Has anyone heard of an inpatient program that is somewhat holistic that could give her an allergen free diet, allow her to take antibiotics and probiotics and to detox. She has been hospitalized for depression but they do absolutely nothing to get her well in the psyche ward and they were adamantly opposed to her being treated for lyme disease. Any suggestions would be very much appreciated. Patty

I also was confused by that recommendation. I have read a couple books about parasites and garlic is recommended. It is also recommended for detoxing metals. I don't know the answer either.

When you say dr j doesn't pulse rifampin are u saying he gives it 7 days a week? We have used him and two other llmds along the way and he was the only one who wanted my son on two 300 mg rifampins a day. The other two thought one was enough I think my son took it five daya a week w jones and the other doctors and took Azithromycin on the weekends. He took rifampin at two different times. The initial and lower dose of rifampin helped him a loy. We didn't really notice a difference the second time he was on rifampin but my son is well now so who knows what helped. I think tindamax made a huge difference for my son. We live dr j -so wonderful that you got to see him. He is a saint and the medical board should learn from him, not harrass him. There will be a special place in heaven for that man when he goes.

Dr. J has a small waiting room with books in it. Kids can hang out there. Might want to bring something else to occupy them like an ipod. Dr J does a thorough physical exam. He also spends a lot of time chatting with the child. He really takes his timeand that surprised me a little b/c we are used to being rushed in doctor's offices. He does this to put the children at ease and b/c he is really interested. W/ my kids he asked them what sports they played, which one was better, etc. What position they play, who fake crys, who fights, so funny. The kids thought it was hilarious. My son was so upset about drawing blood that he held his hand during it. What a nice man he is. He knows kids and how to talk to them. i always had my list of questions with me but you won't need to fill the time with it. I would just watch what he does and listen. He does not always explain what he is doing or what he thinks so ask if you want to know. He will make them blink their eyes one at a time and watch to see if they move just their eye or the whole face. The latter is a sign of lyme. There is a pizza place that is pretty good and about 6 blocks away on some main drag. I wish I could remember the name but I think it is a greek name. Pizza is very good and they also have lots of other stuff. You would have enough time to go there. Other than that there is not much right next to his office. We stayed at the omni hotel which was an easy walk. IVIG never came up with my kids but they were not "PANDAS" either. You will not regret seeing him if for no other reason to have him do the physical exam and see what he says. He likes to do a lot of lyme and coinfection testing with every visit which can get expensive so be prepared for that. Please let us know how it goes! Good luck!

One visit so far with Dr. Bovenzi in Albany, trained under Dr. J briefly. But she's a ped. Ok thanks. It sure isn't a great place to develop lyme b/c there are so few llmds and almost no holistically oriented mds.

What Lyme doctor do you use? Have a relative in central by with Lyme.

You might want to call Dr. Ann Corson, the pediatric lyme specialist in Chester, and ask for a good recommendation. My doctor is near Annapolis MD, couple hours a way. Ceftin is used for lyme and diflucan is supposed to break up lyme cysts. Usually you take doxy first and then add the ceftin. Seeing a llmd is a good idea. IV antibiotics are only used when the oral antibiotics do not work. Having a picc line is not something to jump into unless the llmd says it is your best option. You can't get it wet and you have to be careful not to strain your arm with it in b/c it could move the line. If the oral antibiotics are not working fast enough you can always get bicillin shots. I am not familiar with some of the tests you mentioned although I have heard of neuroscience so I cannot comment. It is true that a negative western blot does not rule out lyme b/c your immune system may have stopped fighting it and no longer produces antibodies. Its a long road but you can get better. Detox and heal the gut as you go and it will help.

For adults under 60 is very likely Lyme. Not sure about kids but I think a low score is significant w kids too.

It is very hard to find Lyme in spinal fluid. I rsearched this because we were pressured by our local hospital while trying to arrange for a picc line ordered by llmd to do a spinal tap on our son because they didn't believe my son's Lyme diagnosis. This was in spite of the fact that he had bells palsy and a very positive western blot and elisa. We decided it was not necessary or worth the risk of introducing another variable or infection in his spinal fluid thru the tap. I told the doctor that if they do a spinal and he gets an infection from it they can just blame it on the lyme disease and I didn't want to take any unnecessary risks with him. I have a friend who lost her sister due to a spinal gone bad during childbirth.She got meningitis from a dirty needle they believe.

I am so happy to hear this. Dr J is wonderful. Good luck to you! It can take a while but it will work!

To check for Lyme you must see a Lyme literate doctor who is a member of IlADS (international Lyme and associated diseases society). I agree that Horowitz and Bock have good reputations.

Yes-all you need is one positive to have Lyme. That's what my llmds said. A dot blot positive means that they found dead Lyme not just antibodies so it is definite. It is not easy to find in urine so a negative does not mean there is no Lyme. Good luck -it is treatable so now you know what to do.

Sure. It doesn't matter if you have a history of a tick-bite. The only person in our family who had a tick bite was my daughter and she had only tick. We all ended up having lyme though. My sister also has lyme and she lives an hour away and does not garden, hike or do any other high risk activity for lyme. There is so much lyme in our area that it doesn't matter. I had never even seen a tick in my life until we got a dog three years ago. I said to my husband, "What the && is that on the dog??!!" I had no idea what an engorged tick was and it was sooo gross. It is believed that you can get lyme from mosquitos and I am inclined to believe this is true. I also heard that some childhood vaccine might be contaminated with lyme b/c it was made in the same lab as the failed lyme vaccine. Who the heck knows but it is truly an epidemic. Steroids are bad for almost everything-infections, hormones, etc. I remember when my daughter had a really bad cough years ago (it was probably early mycoplasma or lyme or babesia) and my pediatrician wanted to give her steroids. I told him no way b/c a) I didn't think she was in danger of not breathing (a mother can tell these things) and I did not want her to have hormonal imbalances later in life from the steroids. He laughed a little and said ABC (airway, breathing, circulation,) comes way before H (hormones) suggesting that I should not worry about hormones b/c breathing comes first. I took the prescription and filled it just in case he was right and then I made a beeline for my naturopath. I had never taken my daughter to her before and she gave me some drops to give her every few hours and the next day she was absolutely fine. She even played in her soccer game. The pediatricians just liberally hand steroids out. Now I am SO thankful I did not listen to him b/c she probably had an infection then. How crazy is it to give a kid steroids without even attempting to find out what is CAUSING the symptoms! Later we realized how truly clueless our pediatrician's office was when they failed to diagnose lyme in my son for at least six months and then failed to give him the right dose of antibiotics for lyme when he finally advertised his lyme dramatically with the development of Bells Palsy (half his face was paralyzed). If you have any more questions please feel free to pm me. One PANDAS/LYME expert recently said that they think lyme is involved in almost all cases of PANDAS. I really believe some day they will realize that the early PANDAS treatment with steroids and IVIG was not wise. Steroids are just really so potentially damaging to the body and you don't know if the ivig is really safe and not contaminated with some infection. That's another topic but I think the PANDAS doctors tools are quite primitive and you are better off going to see a really good lyme literate doctor like Dr. Beals in MD who also treats kids who fit the PANDAS profile. We ended up being treated for multiple infections of lyme, bartonella, babesia and mycoplasma (not all for everybody) but my kids never had what you would call PANDAS symptoms so I have never been to a "PANDAS" doctor. I have been reading this site for over a year though and I am horrified that these doctors are routinely offering steroids and ivig without first doing exhaustive evaluation for other infections besides strep. I also have a family member who has been to several of the top pandas docs and these doctors do not have sufficient training in tick borne diseases. One doctor gave her child steroids after ivig for lyme/strep and her child ended up in the hospital. It is reckless to give a child steroids when they have tick borne infections. As you can learn from reading the lyme forum, so many parents are finally seeing real healing in their "PANDAS" children after going to see a lyme literate doctor.

I agree-look into Lyme. Kids w Lyme have lots if infections and symptoms come and go in cycles. Dr Chriss(sp?) in southern Missouri is a Lyme expert w a good reputation. He worked under dr masters who discovered the southern version of Lyme disease. I don't think there are any llmds in St Louis. Kansas city has some too-email ilads.com. Also review lists of Lyme symptoms-others in the family also often have it. A child who is sick often from birth is the kind of child who might have congenital lyme. It's very treatable so hang in there. Llmds are really talented.

The presence of one Lyme specific band like 23 is enough evidence of Lyme exposure to treat if u have symptoms. U only get antibodies to band 23 if u have been exposed to Lyme. Again symptoms are paramount.

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment). I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong. M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it) IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this) don't know what EIA means 3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab. I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test. None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor. Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you. I agree with this. I would exhaust all other options first and go see a lyme literate medical doctor (from ilads list) to see if they can recommend the right combo of antibiotics that will get your child well first.LLMDs are experts at treating the multiply infected patient, not just lyme patients. Giving your child an infusion of a pooled blood product is not something I would undertake unless it is the very last option. I have a lot of concern about the safety of IVIG (just as I would any kind of infusion of a blood product) b/c I don't think you can be sure that your child won't get an infection from the IVIG. It is a pooled blood product and there is no way to test for all these possible bugs (lyme, babesia, etc. b/c testing is not completely reliable) but pooling blood from so many people must certainly increase the odds that you will get some blood that has issues. I am sure that some will vehemently disagree with this but I would not risk it unless you have exhausted all other options outside of the traditional pandas treatment. I know someone who called the manufacturer of one of the ivig products b/c her child was about to get an ivig and was told that they do not test it for lyme. She was told that a lot of doctors do not even believe lyme exists. That is not reassuring. I have not investigated it myself but I certainly would do so if I thought this was going to be the only thing that would help my child. I think so many of these kids just need the right combo of antibiotics to get well and you have to go outside of the PANDAS doctors to get fully checked out. Most PANDAS doctors are not trained in the diagnosis and treatment of tick borne diseases so you can't rely on them to rule these things out. There are many stories from "PANDAS" parents on the lyme board indicating that they saw true healing with the right lyme/strep treatment, not with the ivig.I know it is a difficult decision and good luck with it.

Absolutely do not do steroids until you have absolutely positively ruled out lyme and coinfections! I believe Cunningham has indicated that the cam score can be elevated by lyme too. Lyme often starts with a fever and often is characterized by unexplained fevers. It is not easy to rule out lyme b/c the testing is not reliable so I would recommend seeing a llmd (lyme literate medical doctor) not an infectious disease doctor or PANDAS doctor. Those who are strictly PANDAS do not understand lyme so you need to seek an opinion from a trained lyme expert. I would suggest even trying a short lyme treatment if the llmd advises this. A short treatment of suspected lyme is much, much safer than giving steroids to a child who may have a chronic infection. Steroids may help some but it is not worth the risk if there is even a chance that your child has lyme or another infection. Steroids can make things much worse b/c it further suppresses your immune system and if you have something like lyme it can allow it to gain further ground in the body. I have read that it can make some symptoms irreversible. Too many on this website are fixated on strep and often overlook other infections. I believe this is because the PANDAS doctors are also fixated on one infection and many of these kids have multiple active infections that need to be treated, not suppressed. "Backsliding" on azithro can be a die off reaction or "herxheimer reaction" that you get when you are killing lyme. Dozens of others on this website have learned that their child really has multiple chronic infections, not just strep and it is very troubling to me how quickly kids diagnosed with PANDAS are offered steroids without the proper lyme evaluation. Its really a misleading name b/c strep is not the only trigger for these symptoms.

Dr Beale in dc or in Stevensville md (cheaper in md) does what a Dan doctor does but he also knows infections better than most Dan docs as an ilads trained doctor. He is holistic too. Extremely smart and good at what he does -35 plus years practicing so he has seen it all...especially the worst cases. Also treats cancer and heart disease holistically.

Both are excellent. Beals is easier to get an appt w and is much cheaper. Beals also does a lot of holistic stuff too which is very helpful like DAN! Doctors do (heavy metal detox, nutritional testing, LDN, etc.) we used both but saw Beals more often. Dr jones sees patients every four to five months and Beals sees patients every month or two. Dr j does a physical exam like no other doctor. He is also amazing like dr. Beals. Dr j runs a ton more tests than Dr Beals in our experience but both treat the symptoms not test results.

I would see a llmd first because you my not need to test igenex (because many will just start treating based in symptoms). Secondly it may make sense to wait a month or so after starting antibiotics to test. A relative of mine did the full panel before starting antibiotics and got a very unconvincing igenex result but her cd57 was 16 so she was sick. It would have made some sense to wait a month after starting because she might have gotten a more positive result. The llmd thinks she has Lyme but her other doctors do not and a more positive test from igenex would b helpful but spending 400 again is not a possibility.