Hopeny

Sad to say the thigh gap has been a thing on you tube. My dd thinks it's gross but she is younger than yours. It's when your thighs are thin to having a space when you press them together good luck to you

Personally I would stop talking with them and find another pediatrician and use a walk in clinic in the meantime. There have been cases with at least Lyme that I know of where parents were reported to children's services for suspicion of munchausen by proxy (I find this ironic as it is so much more obscure and rare than Lyme or pandas yet somehow that's the dx) so IMO if you are sensing some resistance it can be better to seek care from specialists that are experienced and treat pandas. My current and previous practice (we moved) included

To echo some of the posts above, if you are symptomatic I would recommend seeing an llmd , your results have bands that are Lyme specific, as you probably know due to the changing life cycle of the spirochete the tests are at best directional. Having 3 Lyme specific positive bands (I never understand why the put ind, it's like being a little bit pregnant) plus symptoms would make me consider it highly . "Fortunately" for me my kids tested "CDC positive" so I was saved wasting years trying to figure out what was wrong, but I have read so much research that I only consider the tests directional. I am reading a new book by dr Richard Horowitz why can't I get better which might be of interest. If you can do it I think the sugar free diet has helped a number of ppl

I think for a few days it will be fine. It just impacts the potency

We cannot get rid of myco p. we have tried zith , augmentin, biaxin , rifsmpin and doxycycline. After 15 months of abx last time we tested dd was still +. Doctor told us a last resort is cipro but I am reluctant. ASO has returned to normal and Lyme seems quiet at the moment. We are retesting now if there has been any change I will post. There was a study posted once on this board about iv abx for myco. Curious what others have to say

Linda how long has your son been on abx for? I'm not a doctor but I believe if you have had a long course of abx then steroids are less of a concern for Lyme. That said I would call the doctor to ask about those symptoms. We have used a biaxin/augmentin combo to address Lyme.

My brother's daughter has PANDAS and my sister's sons has Tourettes/ASD. I have one PANDAS DD and one with sensory issues, both DD's have immune issues

I can't say I ever got comfortable with it, my DD9 has been on combo abx since around April 2012, she has been on ZIth/Rifampin since November 2012. We are weaning her off and will keep her on a prophylactic dose of Zith for the winter to cover strep. FWIW, my non PANS 4 year old has an immune complement disorder and the very mainstream hospital based immunologist she sees has her on a prophylactic does of Zith as well for the winter. That sort of gave me an odd bit of comfort that this was the recommended course from a mainstream institution. We use probiotics, milk thistle and regular bloodwork to monitor. I remember how shocked I was when our pediatrician prescribed 21 days of amox when DD tested + for Lyme. While I would much prefer not to have gone this route, there was no other acceptable option for us. The alternative would be to have DD likely locked up in a psych ward, on painkillers and psych meds. Today she is a (mostly) well adjusted regular kid who has discovered she is big into sports and nail art videos. The decisions have always been difficult and I still struggle.

Hi so sorry you are going through this. Can you give some more history? My non PANDAS child has sensory issues and adhd like behavior. I recently started using enhansa which is essentially turmeric by lee Silsby. It seems to making a big difference in her mood and behavior.

Yes I want to echo this about the B complex, if your son has the MTHF mutation you need to be very careful as most B complexes contain Folic Acid which can exacerbate PANS symptoms. We use a b complex that has a tiny dose of LMTHF 5 instead of Folic acid (only 200 micrograms) a few days a week and give sublingual B12 on days when DD does not take the B complex.

It seems like your daughter has a lot more going on than just Lyme, I think you have described complex issues since birth. It seems worth it to try something new

We never saw a tick on my older daughter who has Lyme, or a bullseye rash. of course after what happened with my older daughter, I was crazy always checking my younger daughter and I never saw the tick that bit her either, however fortunately for us she developed a bullseye rash so we knew she had Lyme. Lymeaid4kids gives financial aid for lyme testing and treatment, please consider reaching out to them for help with testing and treatment if that's what happens. You are a brave mom and you will find the puzzle piece.

Yes of course, I completely agree that ALL avenues should be explored and without question not all roads lead to Lyme.

I know this is controversial but I have not ever seen a flare that I could directly correlate to any vaccine, prevnar is not a live vaccine. For full disclosure I am probably a lone wolf here in that I am very pro vaccine generally, my pediatrician missed a whopping cough vaccine and my then 3 year old got it and that was one of the most terrifying times of my life. I do space them out though. Both my kids have the immune complement protein deficiency (mannose binding lectin), one is the PANDAS/PANS (strep, Lyme & co, mycoplasma etc) kid and the other just gets sick ALL the time. Having no strep pneumo immunity makes you vulnerable to all sorts of nasty things like pneumonia, meningitis etc so it's important to really learn about it and consider all options. Good luck.

The low titers may possibly indicate an immune deficiency. If your child has had prevnar vaccines theoretically they should have more immunity . Typically they would give a prevnar vaccine and see the response, no response would warrant evaluation/possible treatment. (Ivig, vaccines , prophylactic abx etc) my 4 yo had a good response to the additional prevnar vaccine, waiting to see on my 9 yo. Both my kids have an immune complement deficiency. I'm not a doctor, this is just my experience

This lab in Europe I believe is an Igenex type lab http://www.infectolab.de/index.php?id=32&L=1. Regarding Lyme testing, there is no definitive test for Lyme. The clinical diagnosis is based on symptoms supported by directional markers in bloodwork (not just Western Blot but other tests as well) . Some other infections, such as mycoplasma, commonly present with Lyme, so this can be another clue. This is well described in two books I would recommend, Cure Unknown by Pamela Weintraub and the new book Why Can't I get Better by Dr. Richard Horowitz (he also briefly discusses Strep and PANS). The complicated issue with diagnosing Lyme & Coinfections is that there are literally hundreds of symptoms they can cause making some of these cases true mystery diagnosis. My personal view is that all avenues should be considered, including the possibility that some psychiatric disorders may not be infection related at all. Not to hijack the post but I feel I must respond regarding Lyme. I am not a doctor and this is not medical advice. Powpow I am one who frequently recommends Lyme evaluation by an LLD because the criteria that inexperienced doctors use to diagnose a "positive" case were proposed as surveillance criteria and exclude a number of diagnostic factors excluded because of the Lyme vaccine that was withdrawn from the market. It is unfortunate that your treatment/diagnosis was unsuccessful, however there are thousands of cases where someone was told their Lyme test was "negative" when in fact there was sufficient evidence to warrant further exploration and the disease progressed terribly for that reason. In my own daughter's case, with her pretty much classic Lyme presentation, I was told all of her bloodwork was "negative", frankly having no idea of what Lyme or anything else was. I know now of course at that early stage of the infection it was impossible to test positive, which is why several states now require text to say something to the effect of negative test results do not exclude Lyme infection . Had she been treated at that time, her life would be a lot different now, Lyme & Co are much harder to get at after they have had time to burrow into the body, and much more likely to cure. Fortunately after 1.5 years going untreated, she tested "positive". I would give anything to be able to go back and question that "negative" test. In any case we all have freedom of choice, anyone is free to disregard any of my posts If I can help one or two kids, then it's worth it

Hi I am sorry you are going through this. there are a number of lyme specific bands that on their own combined with symptoms are indicative of Lyme. The CDC surveillance criteria were developed for surveillance criteria and not for diagnostic purposes (it actually says it if you look up the guidelines) and are extremely outdated/somewhat irrelevant. For example, Band 41 which the CDC includes cross reacts to hundreds of other bacteria, while other bands like 23 are specific to Bb and is considered relevant on its own combined with symptoms. There are several good explanations I have read about the lyme testing that can explain this way better than I, including Pam Weintraub's book Cure Unknown and Dr. Richard Horowitz's new book Why Can't I get Better. As SF mom points out the Bb life cycle could help further pinpoint what you are dealing with. There is a species of Borrelia with a Japanese name I cannot recall, that I believe my friends son had, where he would be well for 3 weeks and then would get a headache and fever. After 1.5 years of treatment she had a very good result using Doxycycline which is what is used to treat tick recurring fever. I am not a doctor but many of the symptoms you are describing could be Lyme/co infections. Lyme symptoms do wax and wane. Babesia can cause heat flashes. It may be worth looking through Why Can't I get better (I just downloaded for my kindle) to see what fits. Another option is to contact ILADS.ORG while you are on a waitlist to be seen and see if one of their doctors will work with one of your current doctors. I know it is hard to see it this way but I would consider it a positive that you had a lyme specific band show up positive, this can help get you answers as to why the treatments have not lasted for you and what needs to be treated to get better. All the best to you

Thank you! That gives me a couple of ideas to ask about anyway. I just wasn't sure what ones were used to treat lyme beyond maybe 3 or 4 that are common. Yes, that is what he is taking, I checked the bottle, Tindamax. I don't think we will keep that up, it does NOT agree with him. Can I ask what supplements you have found helpful? I am considering coming back up here in MA to a local doc who also is an LLMD to treat Ian (she was at the conference in RI, and is knowledgeable, I believe). Closer to home. Dr. J is great, but yes, I feel like we get lost a bit and I have to stay on top of things. Busy office! Here are the supps we have found helpful, all under a doctor's guidance. Sometimes its hard to know what's working. I use Pure brand, thorne and metabolic maintenance, and only nutramedix for the herbal drops, any other brands I indicate below. I hope this helps Vitamin D3, 2000-4000 IU depending on her levels Enhansa (curcumin) 600MG Milk Thistle (Silymarin) (for liver) Klaires therbiotic 50BN CFU Quercetin, 200 MG (helps with asthma tremendously as well) Samento - 10 drops (started with 5) Burbur 5 drops every 4 hours as needed, have not used in some time extremely helpful for herx, detox. I have also used Nutramedix parsley drops. 5HTP - recently added, 100 MG L Carnitine - 250 MG Vitamin C - Sometimes, source naturals buffered chewable Melatonin rarely, source naturals Have tried. NAC, it was pricey and couldn't see if it was making a difference, but out integrative is big on it and so are many others. Omega - just never found one I could get DD to take without complaint MTHF, B12 methylcobalimin, B complex - DD has one copy 677MTHF, I have never been able to get this MTHF/B12 to work properly, every time I use MTHF regularly DD starts her compulsion which is skin picking. I was hopeful that this would be a huge help but I am still unsure how to make it work. DD tests low in B vitamins as well. The mother of all supplements for us was low dose compounded artemisinin (sp?) our LLD recommended from Hopkinton labs, I was extremely afraid of it and skeptical. After one week of using essentially ALL of DD's pain that we had not been able to cure over 1.5 years was GONE. The stuff is magic, we tried so much over such a long time and nothing worked for this kid's pain, sometimes she would beg me to help make it better, and then poof, gone in one week on this herb, For two bottles you could buy a nice Coach purse it's a fortune but really was like a miracle for us. We are using it for 2 more months which will be a total of 4 months for good measure. Something else I would consider and have used myself: reseveratral or Japanese Knotwood. Something that caused a horrendous, horrible herx for us but works for others:Banderol. DD started expressing suicidal thoughts again within a day of starting it. Bye bye banderol;

Thanks Dr also mentioned Taurine, I forgot that. My sister is considering seeing Dr. O. My nephew is also on the spectrum, my sister believes in PANS but he has had tics since birth so thinks it is tourettes. He also has some OCD, mostly contamination issues. It all waxes and wanes. She recently had his ASO tested hoping in a way that it would show something but it did not. He has never been tested for anything else. He did get a rash following playing in leaves some years ago but has no pain or any common other Lyme symptoms I am 99.999% positive I had Lyme and Bartonella and wonder if the rest of my family does/did (I feel fine now so think I am one of those people that can recover from it). We had a cat growing up. My niece has PANDAS (my brother's daughter) and my sister's son has tics - my 2 kids have a congenital immune complement disorder we discovered my husband has plus I suspect some level of Lyme/Bart from me plus reinfection. Seeing a pattern?

What I've learned from talking to immunologists about my kids immune complement disorders is that ivig would be monthly for two years. I have started to wonder of most of these pans kids have some type of immune disorder, why do strep and Lyme go so bad in some and not others?? It seems like it would take multiple ivigs if there is an underlying issue. I also do believe if Lyme and co are in the picture it seems like that must be treated, ivig alone does not seem to work for Lyme

Hi there, Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts. Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance I put a small amount of water in a small pot, and bring it to a boil. Then, I squeeze the 30 dropperfuls of tincture into the mixture (hence, the 'flash boiling' part). The alcohol is immediately boiled out, and then I let the mixture cool for approx. 1 hour. Once it's cooled down, I put it into a cup of pommegranate juice and give it to each of my sons to drink. They don't even kow it's in there :-) That's great thank you. I will try it

Sorry I know how hard this is, Lyme is very annoying because there is no one size fits all. My friends son had recurring fever like symptoms, was on zith/cefdinr combo for a long time and then she decided to try Doxy and voila, it worked so well. For us, we have done well with: augmentin/biaxin, zith/rifampin and for my little one with her fresh case last summer zith/cefdinir. The Augmentin/Biaxin seemed to do a good job with the psych symptoms, have used zith/rifampin for about 12 months and am tapering off now. I also found that adding some supplements, under a doctors care/direction, has really helped. My daughter was 8 when we started is 9.5. now. I second guess myself almost every day when I hand her something like 8 pills to swallow but there is no denying she is almost 100% better, and we are tapering off. Personally I am staying away from Tindamax if possible, Dr J is great but you are also in the drivers seat.

Hi - how long did you treat for?

Ps to add Lyme literate docs are familiar with. Lyme neuro symptoms so it's possible to work with a regular llmd for neuro symptoms. Actually I have been surprised/impresses with put doctors in regards to their knowledge about ophthalmic and neuro symptoms. I tried to find a Lyme literate neurologist early on but gave up

I just want to second that we use llm's doctor and he is awesome. If he has a wait list there is another doctor in upstate New York that is also extremely well known I can pm you, dr h. He has a new book coming out this week that I am looking forward to reading. I am sorry you are going through this, it is good that you are pursuing treatment