lyme_mom

Yes that often happens when u start treating Lyme. If symptoms improve off antibiotics it's a sure sign of a die off reaction. Some Drs say only Lyme does this but others think other infections can too.

So sorry that you are going through this. Your doctor is wrong about Lyme being rare in Illinois. I would find a lyme literate doctor and have your son evaluated because the right combo of antibiotics can be miraculous if this is Lyme and coinfections. With history of an embedded tick on the head I would definitely suspect Lyme. They say Lyme goes to the nearest spot to the bite sometimes. If u get bitten on the hip it causes hip pain. Bite on the head can go to brain faster. We never saw a tick on my son but we think he was bitten behind his ear because it swelled up and there was a dot there. He got Bells palsy on that side of the face a week after the swelling. You need a Lyme literate doctor to evaluate. Many kids diagnosed with pandas have other infections too like Lyme. A Lyme doctor (not infectious disease doctor) will know what to do.

You won't regret going to see Dr. Jones and knows more than anyone about lyme and other infections in kids. He is one of a kind. I don't have any experience with Dr. Horowitz but he sounds great. Also you never know how long Dr J will be practicing so you should go while you can especially if your daughter's treatment is stalled.

I assume you see a llmd and I dont know how long you have been treated but my son's palsy was gone after a few months . He still has a hint of difference in his smile that he notices. :-) but I doubt anyone else does. He was treated for 2 years and three months and stopped all antibiotics in September. I think he is done w Lyme but I hope I don't speak too soon. He seems well in every way thank God. After the palsy went away he had other symptoms like body pains, brain fog and memory problems. Those r gone now and he is doing much better in school. I think palsy means the Lyme is neurological and u need to hit it hard w both doxy and an antibiotic that kills Lyme in tissue. A picc line is ideal unless the palsy is caused by bartonellA. I also was pretty sick w Lyme and I'm well after two years of treatment. I stopped in august and feel great.

My son had bells palsy and he was in 2 antibiotics to kill it. That's a very serious symptom.initially he did not fully respond to the Lyme meds even after getting a picc line so they added rifampin because it can cause palsy too and he got better.

We have been able to have muscle testing done by at least five different practitioners so you can definitely find someone to do this. We live near DC so we have wonderful options in this area. Muscle testing offers another clue in the guesswork involved in diagnosing and treating. Not all kids are sensitive to light or noise and not all kids herx. Some just improve. I agree that I would not want to go without probiotics of some type for too long because the antibiotics will wipe out all the good bacteria in the gut. Maybe you could gather your probiotics and bring them to a muscle tester for evaluation. Also bring the other stuff he is on b/c sometimes they said this is good for him and so is this one but not the two things together. That happened with us. The testing showed that samento was good for my son and so was an antibiotic but together they were not good. We stopped the samento. Perhaps there is an ingredient in the probiotics that he is sensitive to. There may be other things you can do to protect the gut in the interim and a naturopathic doctor might have some ideas. I don't know. We had a wonderful naturopath in town who always had an easy remedy or nosode for any issue. She asked tons of questions to figure out which would be right. She asked things like do you prefer your water with ice or without? There were so many questions but it helped her find the right remedy to put the body back in balance and it worked quickly. We did not have her through the lyme treatment though because she got a new job but it was powerful medicine. She also missed the lyme diagnosis but then again most people do unless they are lyme literate.

I recommend that anyone with one child with Lyme get all kids and parents checked for Lyme and ideally thru igenex. This way you know the family's exposure. I and our llmd were surprised that we all had exposure. When symptoms started we knew what it was and the others got treated mug faster than my oldest child. You can never be certain but if symptoms improve on antibiotics and the child can go off the antibiotics that is all that matters. It is common for whole families to have Lyme plus other infections because family members are in the same environment.

Thank you so much! This comes at a time when we are pondering IVIG. We meet with Dr. B. on Monday. Now I am very anxious for the appt!! I agree with the post above but I would also add that the PANDAS doctors are not qualified to rule out Lyme and many do not test for lyme or know how to interpret the tests. They just do not have the training or experience that an ilads trained doctor has. I may have posted that 50% number but I think the number of PANDAS kids with TBDs is much higher. I know that is very controversial but I have been watching these posts for a year and a half and those who check out TBDs usually find a little lyme or bartonella or some other infection going on. By all means do not let them use steroids on your child unless you are absolutely certain there is no infection. Steroids are so dangerous for a child who has an active infection, especially these stealth pathogens like lyme, bartonella and other bugs. I would seek an opinion from a qualified llmd about whether or not an active infection is involved to be safe. ILads.org can point you toward a local llmd. Always get a second opinion. Good luck!

This is an excellent brochure too.http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=586:abcs-of-lyme-disease-lda-pamphlet&catid=12:lyme-in-the-schools-&Itemid=147 If the link does not work, google "abcs of lyme" and click on the Lyme Disease association website. This is easy to read and includes a short section about making adjustments for the lyme affected student. Patty

Thanks for posting this. This will help spread awareness even though it is not the greatest article in terms of the accuracy of the info. They don't mention bartonella which is just as much of a problem as babesia. The statistics on the number of cases of babesia and other tick borne diseases are really low and they do not mention that even CDC estimates these numbers to be a fraction of the number of people suffering from these diseases. They quote Dr. Gary Wormser who is an infectious disease doctor at the heart of the lyme controversy. He does not agree with ilads trained doctors that lyme can persist in patients and that long term antibiotic treatment will cure you. He and the other doctors who wrote the guidelines for the Infectious Disease Society of America regarding the diagnosis and treatment of lyme disease are the reason why so many are going undiagnosed and improperly treated for lyme disease. I did not know that babesia can kill you (any more than any of these tick borne diseases). Lyme can kill you too especially if it attacks your heart or if it causes you to get something like ALS or MS. The stuff about the blood supply was so true. You can have babesia and not have symptoms so you can imagine how likely it is that the blood banks have some of these infections. The author did not mention how unreliable the testing is either. That was a big oversight. A reader might be lead to believe that all they need to do is get tested for these infections and we all know that the testing is not reliable. They did quote Dr. Daniel Cameron who is an ilads doctor. Notice that the woman who was so sick ended up going to an ilads doctor to get well b/c they are the only ones who know how to get rid of these infections. They did not mention the psychological effects of these illnesses either which would have been great to add. In any event it will increase awareness that these diseases are out there so we don't sound so crazy talking about babesia, bartonella, etc. Thanks for posting. Did anyone notice how many times they mentioned St. Louis, which is not usually considered a hot spot for lyme (although I know they have a big problem with it)?

I would go see a llmd asap and not wait on igenex. Dr. B is not trained in treating lyme so if this is a tickborne disease you will need a llmd anyway. It would be good for a second opinion regardless of what the igenex results are and a llmd would start treating the symptoms and not wait for a test result. Keep in mind the tests are not reliable-its the clinical picture and it sounds very suspicious for a TBD. Even if your child is negative on igenex she may still have lyme or any of these coinfections and just not be making antibodies to it or she may have a strain of lyme or coinfections that is not tested for (there are way more than are tested for). I am so surprised that Dr. B does not test every child for lyme/bartonella/babesisa before he does a steroid burst given the high percentage of patients diagnosed with PANDAS who have these tick borne diseases. As you may know steroids can really make it easier for an infection to get worse because it suppresses the immune system. Sometimes it may look like the immune system is in overdrive but it may be because of an active infection. Often this goes away with the right TBD treatment. A good llmd can be a life saver. There are so many stories about this on the lyme forum that will give you hope.

Our family did not have rashes except for one brief rash my son had. My llmd told me that mepron kills Lyme as well as babesia.I really reacted to it fatigue wise-felt like I was dying.

OJ is a good chaser too especially with flagyl which is worse than mepron.

Do you know what is the difference between anti neuronal antibodies and anti nuclear antibodies? A relative is ANA positive so I posted a question about this on the Lyme forum.

Mepron is the drug that got me well. I felt really tired at first because of all the die off. My kids took it too. My doctor used it in conjunction w azithro and doxy for me and with amoxicillin and azithro for my daughter. Later he used it in conjunction w Artemesia and Spiro. It is considered the best one for babesia. Schaller in florida, who wrote book about babesia, says really high doses are needed but I took regular dose and it worked.

My llmd uses Samento. He also uses Spiro which is a homeopathic remedy that kills Lyme and coinfections. He starts with antibiotics though.

My llmd uses Samento. He also uses Spiro which is a homeopathic remedy that kills Lyme and coinfections. He starts with antibiotics though.

Thanks Fixit. I saw that but could only read the abstract. That is what makes me think there is a connection although that author seems to think it is part of post lyme syndrome which is not something that most lyme doctors subscribe to. An active lyme infection could cause this I think.

The emfs on the airplane can make Lyme worse or more active. My son's bells palsy used to get worse on airplane rides but not anymore.

A relative of mine just got her test results back and she is ANA positive. Her ANA is 1:160 and it is speckled. She was negative for coinfections and her lyme results from Stony Brook are: igm wb IND for 41 and she was positive for what they call nonspecific bands 18, 43, 62 and 93. For the IGG WB part of the test she was positive for band 18 as well as for non specific bands 43 and 62. I am not familiar with this lyme test-just Igenex. She was tested through Columbia at the lyme and tick borne disease second opinion service and they apparently use Stony Brook and not Igenex. What do you think? I think she has lyme but we are looking for evidence of it. Any thoughts on what this means?

The motherload, I tell you! Oddly enough, my first born is fine, it's my second that has PANDAS, but I bet I was pregnant with him when some of my fillings had to be taken out and redone... yikes! (no, it was not properly done! ) I still have some to do, but I'm concerned about the cost... We are having to replace our water treatment system, and that's going to take a big chunk of change. But I know I need to do the teeth. Can someone give me a very ball-park idea of how much we are talking about here??? Is it $1K, 5K, 10K??? Pixiesmmommy, so sorry for all you are dealing with! It's amazing how it's all inter-related, to the point where you are running around in circles and don't know what to deal with first!!! We knew have suspected water issues for a while, and finally we are doing something about it, but it seems it's always something else, something more that needs to be done. We've been dealing with this for two years now, and it's become our "new normal"... I don't even visualize that day when this is all behind us any more. I'm just dealing with things as they come, and ready to keep doing this for as long as it takes. It depends on the number of fillings. My son had four small fillings removed by a biological dentist and it cost 900 something. Insurance reimbursed 700 something. Adults cost more but they can usually document that the fillings needed to come out and you can get some reimbursement if dental insurance is good. Somethings are not covered-being desensitized to mercury beforehand and any jaw bone cavitation work. Btw pm me if u want about this because my biological dentist does not do oral surgery to get rid of jaw bone infections. He uses ozone injections which is easier and cheaper. It worked well for me.

Apparently the first born child gets the motherload (appropriate word for it :-) of the mother's mercury. You are lucky you didn't get these fillings drilled out by a regular dentist as I did. I got very sick within a month of it. My llmd was horrified.

Our llmd believes the same thing. I agree with all that you said. I have high levels of mercury according to a recent urine challenge from Doctor's Data. I am no longer sick (as far as I know :-) knock on wood). My llmd wants me to detox before the mercury causes problems. I have been drinking bentonite for months and my levels were still in the 90 percentile. I just started DMPS pushes. I alternate with a DMPS push one week and an IV Meyers cocktail vitamin/minerals the other week to replenish vitamins and minerals I lose with the DMPS. I should be taking chlorella but it really makes me gag. Bentonite and Pectasol (a detox made from apple pectin) is much more palatable. We are planning to order an infrared sauna so that we can all detox more. I am sure my kids also have high levels of metals due to them having had silver fillings unfortunately. By the time I learned about biological dentistry a number of us had had our fillings removed by a regular dentist. My middle son was lucky that he got his removed by the biological dentist.

That's great-always take a picture of any rash so that you have it as a reference when you need it later.