Orion

SNPedia is a human genetics wiki. You can research individual snps there and find relevant PubMed research articles on the site. http://www.snpedia.com Through them, you can access Promethease, and use your 23andme raw data to create a personal report linking your DNA variations to the information published about them. http://www.snpedia.com/index.php/Promethease From their website: I have found Promethease to be a better health resource and I like their reporting style much more than 23andme (before the FED made them stop reporting on health issues). If you go to use Promethease, make sure after you have downloaded the 23andme raw data to your computer, that you unzip the file, and use the .txt file when linking to Promethease, if you want full accessibility to the Promethease report. Also, in the Promethease report, there is a Topics heading where the last topic listed is "Yasko methylation" where you can find more detailed info on the SNPs dealing with methylation. ~orion

In one of the Q&A panel discussions, Dr. Cunningham was asked of the 1000 subjects in her study, how many had a strep infection? Mycoplasma Pneumoniae? Lyme? She answered that only 45% had strep, the remaining 55% had Lyme, Myco Pn, staph etc. The Q&A moderator quickly followed up with asking the audience, how many here have Lyme [as part of the problem]?, and a good 60-70% raised their hands. (That's what it looked like from where I was sitting). In any event, the audience response was so strikingly large, that some of the academics on stage for the Q&A were visibly startled. ~Orion

Hi and welcome! Your story has a number of similarities to my adult child's story. Several points I would like to make: First, Dr. Madeline Cunningham mentioned once, in a radio interview I believe, that her NIH-funded study looking for autoimmune antibodies ended up including people up to the age of thirty. Yes, so much for just affecting children. Secondly, Lyme's OspA is very much implicated in Lyme (PANS) associated auto-immune disease. To me, the unanswered question is, at what point is it all just auto-immune, versus a chronic underlying spirochete infection/inflammation that continues to fuel the autoimmunity. Third, Lyme can definitely impact hormones. There was a point, after my child's thyroid shut down, that the endocrinologist was afraid he was dealing with a panhypopituitarism, where the pituitary isn't functioning at all. Fortunately, there was still some minimal pituitary function, and over time with long-term antibiotics, a number of, but not all of her hormone levels have returned to normal range (including testosterone). Forth, Very interesting how your asthma semed to resolve with the long-term antibiotics. Same thing happened here. I am curious, were you ever checked for Mycoplasma Pneumoniae? That is implicated in asthma, as well as chronic fatigue. Even though the asthma is no longer an issue, DD's Myco Pn titers are still high. Best wishes to you. ~orion

It was reported in the news yesterday that the FDA is now barring the importation of Ranbaxy generics. http://www.latimes.com/science/sciencenow/la-sci-fda-bars-generics-ranbaxy-20130916,0,7988493.story

No engineers here. Several teachers in the family. All 4 kids are exceptionally to profoundly gifted, and one is a math teacher. I vaguely remember some research showing a correlation to giftedness and the number of glutamate receptors in the brain. I wish I had flagged that study.

The most valuable thing is that 23andme provides you with the raw data of all 900,000+ snps which you can download to your computer. I then went to SNPedia and used Promethease to further analyze the 23andme results. (I utilized the $2.00 feature 1/2 way down the page to speed up the program download.) I feel like I got a more nitty-gritty analysis through the Promethease report. I also really like the SNPedia wiki for further research. Firefox also has a SNPTips add-on that links to SNPedia, so whenever you come across a snp in the form rsxxxxx it is highlighted, and by scrolling over it with your cursor, you can see what your 23andme result is. [Just a word of caution though, the SNPTip add-on needs to be toggled Off when looking through your Promethease report as there is a script conflict.]

Treated 5 years ago with a IgG postive, and history of rash. Recently, negative test, but stretch mark-like rash ID'd as Bart rash by 3 different doctors. Treatment restarted.

The diagnosis of Lyme is a clinical decision. According to Dr. J the Western Blots can only confirm a suspicion of exposure to the Lyme Bacterium. The WB can not be used to definitively say who has and does not have the disease.

If I may be permitted to jump into this conversation, my suggestion is to read whatever you can find from Richard vonKonynenburg (R.I.P.) http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ His later work was spent in explaining methylation defects as it applied to autoimmune problems and Lyme Disease. I was fortunate to have communicated with him late last summer, shortly before his untimely death. He helped explain DD's 23andme genetics with some other test results we had. One of the things Rich pointed out was that the effects of the CBS mutation wasn't set in stone, as DD had some other mutations that could be influencing factors. So it isn't enough to say that this genetic aberration does this, and that one does that. He suggested further labwork to better get a handle on what effects the methylation block was having, and finding out how good or bad her digestive health is. Correcting digestive issues comes first, as that is a major key to correcting the other issues. Once digestive issues had been corrected, then we could start his simplified methylation protocol. He also wrote: Rich also said to watch for low potassium levels as the methylation block lifts. Adding in additional potassium (bananas, orange juice) to the diet could help. ~Orion

Yes it is obvious-- the locked results are at the top of one of the health reports with little lock emblems- and if you click on it, you still have to confirm on the next page you want to see it, so it is impossible to view by accident. You will be able to see and understand the results pretty easily in the categories of disease risk, carrier status, drug response and traits. This will not give you the methylation results though. You have to down load the raw data and put it in the Genetics Genie or have someone who knows how to interpret have access to your raw data. My spouse and I both have our results from 23andme under 1 account. I wanted to know my Alzheimer's and Parkinson results, he didn't. So that is what we did. Whenever I review my results the results are shown. If I toggle to his name, the results are still locked and unknown. I could unlock them, since it is all under 1 account (one user name, one password), but I respect his wishes. Someday, if he changes his mind, they will be available. If you want to keep your results completely private, then when you register, register under separate accounts. We had other reasons other than Methylation issues as to why he pursued 23andme testing. We have allowed our test results to be shared with several adult children. When they see our reports, or when we see theirs, any of the sensitive results (Alzheimer's, Parkinsons,etc) that you had to unlock to view ARE NOT available at all. It is like they do not exist. They won't show up under Disease, under Technical Reports, not anywhere.

Doryx is Doxy in a delayed-release formula. It is easier on the stomach. My daughter tolerates this so much better than Doxy. I am not sure if there is a generic version of Doryx available or not, you may need a Prior Authorization filed for insurance to cover it as when my daughter started it, it was quite pricy.

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Doryx is a sustained release form of doxycycline. it is much more tolerable that the generic Doxycycline. DD could not tolerate the regular doxy, but is tolerating this so much better.

My first question is, was the tick engorged at all? Different tick-borne pathogens are transmitted at different rates. But despite the conventional wisdom, any tick bite can be problematic. It is good that you saved the tick, as UMASS extension service will test the tick for Lyme, Babesia, Anaplasma, and Bartonella, the most common co-infections. That may offer you some relief. having said that, if there is Lyme in your area, personally, I would get treated. Increasingly, doctors are giving a 1day prophylactic dose of doxycycline ( your son may be too young for this drug??). However, too many docs do not know the research only shows this to be effective 1) if given within 48 hrs of a tick bite, and, 2) only really stops the rash, the researchers discounted other Lyme-like symptoms. If it was my son, and knowing that there is most likely something potentially wonky with my kids immune system, I would most definitely fight for at least 2 if not 4 weeks of antibiotics. Mark down on the calendar, when your son was bit, in case symptoms develop a few weeks from now. and, re- check him for ticks, if there was 1, there very easily could be more. Ticks like to bite areas where the sun doesn't shine, as they say. Groin area ( testicles too), inside belly buttons and ears are favorite hiding spots Remember, the nymphal ticks are the size of a poppy seed. Any rash that may appear, most commonly 3-30 days after a bite, may not develop at the site of the bite. Edited to add: I just retread your post. SQUISHED??? How was the tick removed? If removed any other way, other than tweezers, the tick could easily have regurgitated before removal, adding the risk of germ transmission. Are you sure all mouth parts were removed?

Just throwing out an idea, as I really don't have the answer. Since Lyme is involved, is it possible the "herx" reaction could be associated more with the prednisone as opposed to the IVIg itself?

DD has had multiple IVIg, she's never experienced what I would consider a herx from it. The anxiety/panic/paranoia did not resolve overnight, but it didn't seem any worse either. The movement disorder was definitely better from the start of IVIg. Each doctor seems to have their own protocol they follow when giving IVIg. DD has never been given steroids. Beforehand she takes Benedryl and Tylenol, and finishes up the infusion with a saline infusion for hydration.

I responded more in depth on the Lyme forum. I feel that the autoimmune issues (Sydenham chorea) will not go away on it's own and need to be addressed, sooner as opposed to later, so I vote for the IVIg.

Could you explain the above statement? Yes, steroids are generally contraindicated with Lyme, because it can surpress the immmune system and allow the Lyme spirochetes to run amok. [Exceptions have been made, especially where the eyes are concerned.] But what have you heard are the risks with IVIg and Lyme?

My DD most definitely has Lyme, and PANS as well. She tested quite high on the anti-neuronal autoantibody markers in Dr. Cunningham's study. It was explained to me that in order to treat the autoimmune component (severe anxiety, chorea, and myoclonic dyskinesia) of her illness, DD needed IVIG. IVIg is NOT a treatment for Lyme, so DD is on concurrent antibiotic treatment for the Lyme and co-infections. Her LLMD believes that her autoimmunity is infection driven, and so, as long as the infection is present, for her, the autoimmune response will continue. (She also has been testing positive for both Mycoplasma pn and strep- whether they are aiding and abetting the autoimmunity is unknown at this time- but the abx she is on should take care of that as well.) Since starting the IVIg, the chorea has stopped, the myoclonus is greatly improved- she is going weeks between episodes. Anxiety is under control; food sensitivities/allergies is greatly improved as well. We are hoping that a few other of her complaints that could be auto-immune responses over time will disappear as well. So my advice is to attack the known autoimmune response [and perhaps prevent any or further damage to the basal ganglia] with the IVIg, and continue to persue looking into Lyme and co-infections as an additional trigger. Editing to add that DD also has/had positive markers for Bartonella, and her LLMD feels that that germ should be added to the list of PANS causing agents. ~Orion

Dan- PM sent.

I'm under time constraints this morning, just wanted to quickly post a few links for more information and further consideration. Dr. Amy Yasko has been studying genetics and methylation problems in autism for a number of years. She has her own testing and supplement work-arounds she uses: http://www.dramyyasko.com/ This link will connect you to her sites dealing with a number of topics. Dr. Rich van Konynenburg has also been working on methylation problems as it affects the Chronic Fatigue population. Expanding on Dr. Yasko's work, he offers a simplified Methylation protocol:(scroll down to post #7) http://forums.phoenixrising.me/index.php?threads/simplified-methylation-protocol-revised-as-of-today.9447/ He advises correcting methylation should only be followed under a physicians supervision.

Concerning the head shaking, and possible ear infections... If the doctor says there is no infection, ask if h/she sees any fluid. Any fluid in there can be very uncomfortable! Whether to treat for fluid vs a full blown ear infection is quite the area of disagreement in the field of pediatrics. And many times, the pedi's see the fluid, but if the ear drums aren't showing infection, they will say that all is OK.

Just one more thought - LDN is supposed to be given just before going to sleep at night. You probably are doing that, but just thought I'd mention it.

We didn't experience any herxing because of the LDN- just a slight uptick in well-being. The herxing just may be co-incidence. 2.5cc sounds like it is a liquid? So I think my idea of investigating what filler was used in the capsule may not apply. You may want to start with a lower dose, or very slowly work your way up to the prescribed dosage.

Have you looked into food allergies? DD never had any until Lyme. She was switched to a gluten-free diet before food allergy testing. With the testing, we found out she wasn't allergic to wheat at all, but to rice, corn, soy, sunflower seeds, eggs and peanuts. Everything she was eating in lieu of the wheat, she couldn't really tolerate! A lot of gut pain, nausea and vomiting cleared up once she stopped eating those foods and was put on IVIg for PANS. She still can't tolerate rice and soy, but the others she now can handle on a rotational basis. She is still on oral abx, and is tolerating them.