Dedee

LLMD means Lyme Literate Medical Doctor. They are specially trained by ILAIDS.

Ok, I went back and read your posts again. Let me put in another plug here. Your physician may be willing to prescribe antibiotics but he doesn't have the knowledge to help you. For instance, it isn't enough to tell you this is just a herx let's tough it out. No, an LLMD will tell you how to minimize your herx, how to increase detox and when to call if herxing gets too bad. You should not be left to figure this out on your own. As I said, you should be given guidelines on how to start the antibiotics slowly, how to increase slowly to minimize this and what is considered "normal" reactions vs. abnormal. This is where your LLMD is worth what you pay them. Get one.......ASAP! Dedee

My daughter has lyme & bartonella. When we first start antibiotics we have to start very very slowly at a low dose and work up slowly. Other wise her herxing is intolerable. We increase the dose every 10days or when her behaviors level off and we never start two antibiotics at once. Another thing that helps is using things that inhibit the cytokine cascade. This would be things like Japanese Knotweed or Cordyceps in high doses. You can read Bruhners book on Lyme co-infections to learn more about limiting cytokine cascade for infections. It's very helpful. Lyme has an approximate 30 day cycle, so we see my daughter regress around that time. Most LLMD's will say between 21-30 days depending on the type of lyme infection. This is actually what convinced me that my daughter was positive for lyme. I started charting her regressions and it was pretty amazing how cyclic it was. Scary really. I don't remember if you said you had an LLMD or not, but sounds like you need one. Most LLMD's use Igenex testing and then diagnose by clinical symptoms and not test results alone. If your physician will not do Igenex testing, find another physician. This is not standard LLMD practice. Neither is ignoring clinical symptoms. Best of luck. Dedee

How long has he been on this antibiotic? Usually you see herxing when you initially start the antibiotic, not after he has been on it a while. If problems start after he has been on it then it isn't working anymore. What more proof does your doctor need that the antibiotic isnt't working? There are many antibiotics that can work for this. Biaxin works very well. You need a different doctor. You need a supportive doctor. Also, your son needs an MRI. Neurologic lyme can be dangerous and cause dangerous encephalitis. No child should suffer this way. Do not allow any doctor to put you off. Your son deserves to be treated for this medical condition. Find a physician (LLMD) who will help you. Don't delay. Dedee

I really appreciate all the responses. My daughter is on antibiotics for her lyme & bartonella so I feel that she should have some type / amount of probiotics daily. She doesn't respond well to Sach. B. So I use Klaire brand. What I am evaluating is the amount. Some days I give her 50 billion units of one type and other days I give one hundred billion of another. I can't really tell much difference which ever I use. She also has constant constipation so we use various other things for that (Mag, bowel cleanse, etc). I was just interested to see what others thought on the subject. Thanks again. Dedee

Just wonder what everyone thinks about this person's experience? http://www.regardingcaroline.com/probiotics.html Dedee

You can go ahead and test. The titers will stay elevated for weeks. For your Mycoplasma, you must get both a IgG and IgM or you really will not know what you are dealing with. The IgG will only tell you that she has had a past infection. You already know that. You need to know if there is current infection which is what the IgM shows. As far as the physician is concerned, throw him out with the bath water. Those who don't believe in PANDAS / PANS aren't worthy of your time at this point. There won't be any convincing them. PANDAS / PANS is well documented with evidence based medicine and providers with their head in the sand aren't worth your effort. You need to seek a PANDAS specialist or a LLMD immediately. You say your child has OCDish rituals and does things till they feel right. This is very classic. The therapist at the PANDAS clinic calls this "Just Right" OCD and evidently it's very common. The child really can't explain exactly why they do something but they just know that they have to do it to feel "just right". OCD is very hard to identify in kids and there are probably many things going on that you aren't aware of that fit into that category. You are on getting a good start with getting the labs but you need to get an appointment with someone who will know what to do with the results. You can go to the pandasnetwork.org site and get a list of providers. Best of luck. Dedee

The amoxicillin probably isn't strong enough and definitely isn't for long enough. An average of 30 days is what he needs to get things calmed down. I agree with the Augmentin or Biaxin. You need to immediately get an appointment with a PANDAS specialist. Even if your physician says he has read about or seen PANDAS he still doesn't know how to treat it (obviously). Also, try some ibuprofen to see if it helps with symptoms. Sometimes it will help decrease inflammation and give temporary relief. Educate yourself and read as much as you can about PANDAS. Do not depend on your physician to do the right thing for treatment. You will be disappointed. Dedee

Glad to here you are doing well again. I didn't see your original post. We are also in the Nashville area and have been dealing with PANS / PANDAS for over 11 years with our 3 children. Just wondering what DAN you are using and who you use for CBT. It's good that you can get this under control so well with antibiotics. If you keep getting flares you may consider continuous antibiotics at least through the infectious season. Best of luck. Dedee

You should absolutely get Myco IgG and IgM labs done. Even if the current pneumonia resolves she can still have Myco P. My daughter had Myco P for years but would only get pneumonia a few times a year and then it would clear on x-ray. When we finally got titers years later they were through the roof. About the Zith and the tics. My daughter is also being treated for Lyme and bartonella. When she is on Zith, for some reason her tics go completely away. Now, her tics aren't terrible. At times worse than others, but always present (unless on Zith). Her LLMD isn't sure exactly why this is but we eventually had to switch off the zith to a different antibiotic combo (because she had been on it for a while), and her tics have come back. I thought for a while it was the Rifampin controlling the tics, but we left the Rifampin on and it made no difference. I think I have heard from others that Zith has helped with their kids tics. Could be the immune modulating effects. Hard to tell. Dedee

When we discovered that my daughter had Myco P our PANS specialist suggested that we test the entire family even though no one in the family had symptoms. My middle son who had shown OCD symptoms in the past but was currently doing well had very high IgG and IgM levels. In fact he had not had any anxiety or OCD symptoms in a couple of years. Myco P can act like lyme in that it can be present in the body but not cause problems for years until activated. Activation can occur by any number of things, other infections, stress, etc... We treated both my daughter and my son and my son's levels came down much quicker than my daughter's. It took almost a year of combo antibiotics to treat my son but over two years to treat my daughter. That was more than two years ago. My son now is in a very bad flare and we are in the process of checking to see if the Myco has returned as this is not unusual. I would absolutely treat. It's not something to mess around with. JMHO. Dedee

I just want to send you a big cyber hug and tell you how sorry I am that you are going through this. It stinks. You are a great Mom! Keep doing great Mom stuff! Dedee

The symptoms you describe fit lyme infection. An ongoing infection would also explain why IVIG did not give improvement. Lyme is a tricky thing. If you do a search on the archives on this forum you can learn a great deal. Very basically it is hard to get a blood test that is reliable. You need to see only doctors who are trained in the treatment of lyme. A LLMD (lyme literate MD) will look at test results and clinical symptoms to decide if your son fits the diagnosis. Other physicians only look at whether the tests say positive or negative. Again tests can not be looked at exclusively. Do some research on lyme disease and you will see the contraversy. Many here have gotten positive results from an LLMD after being told they were negative by a main stream physician. It is not unusual for one month of antibiotics to fail to give improvement. Especially if you are dealing with something other than strep. You should find a LLMD or a PANS specialist and get more testing done. Sounds like you need more antibiotics or a combo antibiotic. It's possible if you got the right treatment you wouldn't need the psych meds. Not to say there is anything wrong with giving them. We have gone that route in the past. I would try to exhaust all other methods first though. Especially if you have only done one round of antibiotics. Extensive testing for infections and immune response should always be done with these kids. If your physician has not tested beyond strep, you aren't with the right physician. Dedee

This is all very suspicious to me. One of the diagnosis that Dr. Murphy put for my daughter several years ago was "suspected connective tissue disorder". She did not have any of these tests done however and there was no follow up. I'm wondering if I can get our LLMD to order some of these. Also, we have a strong history of autoimmune thyroiditis which I would like to have her tested. Thanks so much for your help! Dedee

PowPow, Were those antibodies serum antibodies or spinal fluid? Sorry to be noisy. Very interesting information. Thanks. Dedee

Interesting. Yes, that is often used for ADHD. Let us know how things go.

Praying for your son. Hope you get some answers and some resolution. Dedee

I would talk to his physician about changing his antibiotic. Have you ever tried Biaxin? Also, I would try ibuprophen to see if that helps with the tics.

I agree with LLM, push your physician for more testing. Look through the archives and get a good list of baseline labs. You need some immune studies and some testing for bacterial and viral infections. At least if you get that done you will be ahead for the next step which is.............. Find a good PANS / PANDAS specialist or an LLMD to treat your child. You need to do this right away. Your appointment will most likely be a couple of months out so get on it right away. There aren't any regular physicians who can figure this out. Don't waste your time or energy there. I know this is a very difficult time. Get through it one day at a time and accept help and support from family if they are helpful. Those who are not supportive, should just be avoided. You will get lots of information and support from everyone here. Educate yourself with everything you can find on PANS / PANDAS. Stay determined. You will beat this. Dedee

So what is the name of the stimulant medication that you are trying?

Oh my, I could write a book on this topic. What haven't I done for rages. Most haven't helped. Some have helped a little. Raging is a very difficult thing to deal with. You don't know how much they can control and how much they can't. You want to believe that surely they can't help it. My daughter went from raging to flat out violent and attacking me. Umm, nope. Not happening. She got bigger and stronger and when it happened I would get so absolutely furious that she had hit me that it was all I could do not to be physical back. The things that helped were GABA Balance. Also anything that helps with cytokine cascade......We use Cytokine RNA by Holistic Health but this is pretty expensive. Other things that help cytokine cascade are Japanese Knotweed (in high doses). You may want to read Buhner's book on Lyme co-infections. Even if you aren't dealing with lyme, all bacterial infections cause a release of cytokines and his sections on controling cytokine cascade is very interesting. Another thing that we ended up using was Lamictal, a prescription medication used as a mood stabilizer. What ended up stopping the violence (and I mean completely), was our last visit to USF, doing the CBT / ERP program there. It was quite suprising for me to learn that my daughter really could control the violence. I always thought this was something outside her control when she went into a rage. Then as we implemented the techniques and consequences they taught, she suddenly didn't hit any more. She does still rage from time to time but it's noise, not violence. Big difference. Things are far from perfect with our daughter. She is still defiant, very OCD, anxious, ect.... But the violence and hitting was something I absolutely could not tolerate. We are still working on the rest. Dedee

My daughter also had frequent pneumonia with asthmatic symptoms and my son had "asthma" for many years before they both had labs that showed positive IgG and IgM antibodies for Mycoplasma P. At the time of the positive antibodies neither were symptomatic. Amazingly after my son's antibodies went back to normal his "asthma" has never returned. My daughter barely has any wheezing and coughing anymore, only when she is sick. You should definately have get a full infectious workup. I would suggest an LLMD. You may have to give up the idea of finding someone close to home. Not many of us are that lucky. Our PANDAS doctor is 12 hours away and our LLMD is 5 hours away. We are lucky that our LLMD will do phone consults with us now and only requires us to come in once a year. The first year we came in every 6 months, but we have been there for a while now so this year she said we could change to once a year since she knows us to be compliant and forthcoming. Not that I always do everything she says exactly, but if I do anything different I always confess. Find a good LLMD right away and get some testing. You need some answers. Dedee

I'm sorry, but any doctor who refuses to do lab work under these curcumstances is not aggressive enough in my opinion. Yes I understand he says he has treated PANDAS before but that does not make him a specialist by any stretch of the imagination. You need to go to a true PANS specialist or an LLMD. Stop chasing your tail and get real informed opinions. This type physician make me so angry. You need cold hard proof, not just his opinion. We need in depth lab work looking for infectious triggers and immune response. Please post the area you are from and hopefully someone can tell you a REAL specialist close by. You may very well need to travel to get a good physician, but it is well worth it. I am sorry you are having such a hard time. Dedee

Also it says it can be diagnosed by a test developed at University of Penn., but it doesn't say what that test is. Can't they let everyone in on the secret please?

If you run the 23andme raw data through the mthfrsupport.com site it gives a section on Thyroid. The CTLS4 (rs231775) is "linked to Hashimoto Thyroiditis". This is the SNP that my family is +/- for. So I wonder if I should have them checked. Especially my daughter who I can't seem to get stabilized despite multible antibiotics, 2 IVIGs, and methylation treatment. As I said though, my sisters and my brother were +/+ so obviously a higher risk. Not really sure. I guess I could ask the doctors to run the same tests your son had. Thanks for all the info. Dedee