mdmom

Thanks, everyone. I really appreciate all of the input and ideas. I really would be lost without this forum.

This is from a mass e-mail that I receive from lymedisease.org If anyone tried to do this, as I did this morning, you will likely have found out that newspapers like a local angle. My features editor told me she couldn't print anything that didn't involve someone in the county. So, we need to come up with kids Dr. Jones has treated and see if their parents are willing to have them be part of our feature. This is what will get our story told. If you have a child Dr. Jones has helped and are successful at getting your paper to run our story, your efforts might save another child's life. Phyllis Mervine Here's something almost everyone can do. We have just published a story about Dr. Jones' troubles. Check it out. Several people contributed to it and it's pretty hard-hitting. I think you'll like it. http://lymedisease.org/news/lyme-times/supporting-dr-jones.html Here's what you can do to get our story out there. Call your local newspaper and ask them if they'd be interested in running a feature story. Ask for the email address of the person you should send it to. Send the email with the link, and then after a while call back to make sure they got it. Do what you can to encourage them to run it. I can help them find a photo if they need one. If it's a slow news day, we may be lucky. We also put the article on our facebook page. https://www.facebook.com/2LymeDisease.org Share the item with all your contacts. Your newspaper may have a facebook page. See if you can find it and post the link http://lymedisease.org/news/lyme-times/supporting-dr-jones.html on their page so other readers will see it. Post the link on any other health-related site that allows you to. Let's see if we can get this article out there where people can read our story and maybe some of them will even help Dr. Jones. I'd love to hear some success stories on this one, so if you have one, be sure to let me know. --

SurfMom, My thought exactly - I knew what I was getting into, and we certainly have been methodical and patient with each step of treatment, but I guess I still have that hope in the back of my head that my son will just wake up one morning and not have to worry or wonder about how is brain is functioning. Thank you - so glad I'm not in this foxhole alone.

Thanks, philamom. Your kind words really help. I am not 100% sure he wasn't exposed. His chances of exposure are limited, though. He does not go to school and we aren't even taking him to church once a week like usual b/c of the risk of exposure. It probably doesn't help that we started a parasite protocol last week.

DS15 had first HD-IVIG 3 weeks ago. He is slowly going downhill and I realize that there could be a turning-back-the-pages thing happening, but it's really hard to watch this. He was not in an exacerbation when he had the infusion. In fact, he has not had a significant exacerbation for a very long time, since we have worked at knocking down infections for over 2 years. He is very sad and annoyed that his brain isn't firing correctly - he cannot comprehend math concepts, his writing is deteriorating, he seems depressed and he is very irritable. I knew going into this (as did he) that things might get worse before they get better because the old ways, emotions, behaviors that are stuck in his brain have to work their way out. But it still really hard to watch and he tells me "No one really understands how this feels." I happen to be reading "Brain On Fire," at the moment and wish I could invite the author to my home to give him encouragement. She sure knows how it feels. Any encouragement and/or stories similar to this would be appreciated.

smarty... thanks for sharing this. I will be there. I live north of you in Harford County, so it's short drive for me.

DS15 (PANS dx) also has a CVID dx. IGG levels hover around 600. Normal for his age would be no lower than 946. He qualified for insurance coverage for IVIG with his low levels, so we just started IVIG every 4 weeks. Doing high dose right now, but wondering if we will eventually drop to a maintenance dose to address immune deficiency only, as the high dose obviously would help with both the autoimmune issue and the immune deficiency, but high dose may be too much long-term. Not sure if the IGG levels will stabilize or if he will always need IVIG, like most people with a primary immune deficiency.

Sorry to keep going around the block on this, but that IGG level is probably an active infection that's been around awhile. I think most here would agree.

Be careful of calling your insurance company with that diagnosis code and do not give them any other information. Call first and ask for the Medical and Behavioral Health Policy Manual. They should be able to send you a copy or at the very least, send you a copy of just their IVIG policy. Do not give any other information, as they will record your conversation and take notes on why you called in. If they ask why you want it, just tell them it's your right to have a copy. Let your doctor handle the rest of the communication with the insurance company unless you have to appeal after a denial. Most insurance companies are not covering IVIG for PANDAS, so you want to be careful in how you proceed. Diagnosis code 279.49 is for Autoimmune disease NEC (not elsewhere classified), which sounds very vague and might not be covered by insurance. I also agree with the advice to pursue the Mycoplasma infection first. Some people here have found that dealing with infections before jumping into IVIG was a better choice in the long run. An LLMD is going to be your best choice of docs if you are dealing with Mycoplasma.

rowingmom... itching in the evenings makes me think parasites. Maybe the GSE is stirring up a parasitic infection?

DS15 is 6'2" and 130 lbs and has taken 1 gm at breakfast and 1 gm at dinner. He now takes a maintenance dose of 1 gm at breakfast. DD13 is 5'5" and 160 lbs. and takes 1 gm twice daily. They have both also taken IV acyclovir (equivalent to oral Valtrex) for many months (alternating between oral and IV throughout the week) with no problems.

I used Trazadone once for my non-PANS/PANDAS daughter who has sleeping issues as symptoms of Lyme, Bartonella, Babesia. I, like you, was concerned that it is indicated for depression. I thought our doc was secretly trying to tell me something about my daughter.... I begrugingly tried it once - with my daughter's permission since I always tell her it's her choice of what she puts in her body (remember, she's my non-PANS/PANDAS child, so I can reason with her like this). It made her feel like she was going crazy. She kept telling me, "Something is wrong with my brain." Not sure if she felt woozy (like drunkeness), but we never tried it again b/c she did not like the feeling it gave her. I would say she appeared to be paranoid after taking it. Sorry this probably isn't helping you much, but I thought I'd throw out our experience. As a side note, we did try other "natural" sleeping aids like Melatonin and Valerian Root. The Melatonin did nothing and the Valerian Root made her have frightening, vivid dreams.

Our doc would interpret the high IGG Mycoplasma as an active infection that's been around awhile and the body is clearly still fighting it. Most docs will just brush off these results, but many on this forum have found that Mycoplasma is a piece of their child's PANS/PANDAS puzzle.

bumping this to keep it alive....

I agree with Deedee...it would probably benefit your son to find an LLMD. LLMDs are very good at dealing with all sorts of infections. I wish I could tell you otherwise, but healing from PANS/PANDAS is a long road. We started treating our son at age 13 in Nov 2010. He did not start showing much progress until about 1 year later after treating infections aggressively. I have to keep reminding myself that he did not get sick overnight or from one thing, so he will not get well overnight. We have treated (despite mostly negative test results) for Lyme, Babesia, Bartonella, Mycoplasma, Strep, viruses, yeast. We have addressed detox and genetic mutations for MTHFR. This is a long process. Keep digging for answers. Dr. T is great but it might behoove you to start buildig a team of docs to help your son. Best of luck.

DS15 had his first HD-IVIG 12 days ago and my husband and I have been waiting to see some effects, good or bad. Today was the first day he seems "off." Things I haven't seen in at least a year (since we've knocked down infections) are coming back: old compulsions(without the obsessive thoughts), sensory issues, agitation, trouble with math problems. Classic PANDAS/PANS symptoms. I guess it sounds weird, but I am glad things are getting stirred up and I know that often kids will experience a "turning back the pages or peeling the onion" effect after steroids or IVIG. My question is this: should I treat this as an exacerbation and dose ibuprofen to reduce brain inflammation or just ride the wave?

Yes, I have worked with the IDF and found it to be a good resource. When I was fighting my insurance company last fall for IVIG (for CVID), they had one of their consulting docs look at our case. However, he basically said that PANDAS/PANS is not a proven disorder, so this was disappointing to hear. Perhaps the IDF could use some educating by parents dealing with PANDAS/PANS. The IDF is in my backyard here in the Baltimore area.

Flumist did my son in as well, which is why I am so passionate about making sure people in my life at least educate themselves about vaccines.

I know Mercola is controversial in the mainstream medical community, but this article is worth reading. http://articles.mercola.com/sites/articles/archive/2013/01/29/genetically-engineered-flu-vaccine.aspx?e_cid=20130129_DNL_art_1&utm_source=dnl&utm_medium=email&utm_campaign=20130129 I was particularly struck by this part of the article: Vaccine Damaged Child Awarded $1 Million A lot of people still believe vaccines are safe, not realizing that children are being permanently harmed each and every day by mandated childhood vaccinations. Sadly, once that happens, the family is left ‘holding the bag,’ with no recourse. In December last year, a family won a nearly $1 million settlement12 from the National Vaccine Injury Compensation Program, but this is a rarity. Severe flaws in the system results in the majority of vaccine injured children not receiving any compensation at all for the harm inflicted on them. According to the court’s decision13: “Petitioners alleged that as a result of “all the vaccinations administered to [Ryan] from March 25, 2003, through February 22, 2005, and more specifically, measles-mumps-rubella (MMR) vaccinations administered to him on December 19, 2003 and May 10, 2004,” Ryan suffered “a severe and debilitating injury to his brain, described as Autism Spectrum Disorder (‘ASD’)... Petitioners specifically asserted that Ryan “suffered a Vaccine Table Injury, namely, an encephalopathy” as a result of his receipt of the MMR vaccination on December 19, 2003. Id. In the alternative, petitioners asserted that “as a cumulative result of his receipt of each and every vaccination between March 25, 2003 and February 22, 2005, Ryan has suffered . . . neuroimmunologically mediated dysfunctions in the form of asthma and ASD.” In this case, while the MMR vaccine was indicated as a possible culprit, the primary cause was believed to be the sheer number of vaccinations. The cumulative effect of multiple vaccinations simply cannot be underestimated, and now they’re asking you to vaccinate your children against the seasonal flu, each and every year, starting from the age of six months! And they’re recommending this without ANY proof whatsoever that this is indeed safe. Safety is “assumed.” Not tested and verified. Please do remember this. One way to evaluate your child’s potential for vaccine damage is to get his or her gut flora checked prior to getting any vaccine. For more information about this novel but promising way to prevent vaccine damage, please see my interview with Dr. Natasha Campbell-McBride.

My son has been on Valtrex for about 14 months. He has made huge gains on it. I've said this many times before, so forgive me for repeating myself - but he calls it the "magic blue pill." He himself could notice a difference in how he felt emotionally and physically after 1 month on it. He took (2) 1gm pills/day for 1 year and we recently dropped to a maintenance dose of 1 pill/day. My DD13, DH and I have all taken it long-term with no noticeable side effects.

My son is still doing well after his IVIG pre-infusion with this hydration. He had no side-effects from IVIG. Also, my daughter had a similar cocktail last week at dr.'s office - 25 g Vitamin C + 400 mg mag sulfate + a bunch of B vitamins. She is no worse or better at the moment, so no herx with her either. I was more concerned about giving mag sulfate, as many years ago I watched a friend with pre-term labor become delerious on it, but our home health nurse said that 400 mg of mag sulfate is a low dose compared to what they would give in hospitals for things like pre-term labor. Our nurse had never administered the mixture before my son and she was not at all concerned with the dosing. Dr. R (well-known DAN!) developed this protocol.

Thank you for this. My daughter just got finished singing the "why me, why now," song and we both were crying. We watched this together just now....it was a good way to finish a hard day.

mama2alex... Thanks for sharing your experience. The info is most helpful. laure - so glad to hear things are improving for your daughter - I know it's been a long road for your family.

I sent you a personal message. Check your inbox.

I posted this on the Lyme board, but there's not much activity there these days.... DD13 was making good progress on IV treatment for co-infections and took a sudden turn for the worst 18 days ago. Her most severe and debilitating symptom is an unrelenting frontal headache. Nothing touches the headache - we've tried various OTC pain meds, Rx muscle relaxants, massage, chiropractic, epsom salt baths, Vitamin C/Magnesium/B Vitamin infusion. Spoke with LLMD today and had a lightbulb moment.... The headache started after she visited a friend's house who just had their old bathroom completely remodeled. My daughter reported that the old bathroom was covered in mold. I'm thinking a big mold exposure hit her. So it's the most likely theory, although we are going to do a CT scan of brain and sinuses to rule other out causes. LLMD prescribed Cholestyramine for biotoxin exposure. I read Shoemaker's protocol on the use of this, but I'd like some feedback from you smart people out there on the front line.... Thanks in advance.