LNN

I must be landing on some of the same sites. Valcyte scares me, as DD is just 7. But she seems to be getting worse, not better, 3 months after EBV symptoms suddenly appeared. On Sat, she asked to leave a birthday party after 15 min - she just didn't have the energy. I got her to stay an hour, but it's like the light is going out inside of her.

I would look for a DAN doctor. If you can't find one who is affordable or takes insurance, ask them if there are any pediatricians in your area that they refer patients to. This will give you an idea of who is friendly to the ideas we here seem to share.

The dosages are listed on Buhner's site: http://buhnerhealinglyme.com/ Thank you!

I've learned that you are very wise

I gather from your flurry of posts that you're in that tornado of emotions that come when you first try to wrap your head around all this. Is it lyme? Is it Pandas? Is it both? Will it ever stop? How did it happen? What do I do?????? It's a really awful place and we've all been there. It's like any dramatic event - you get the wind knocked out of you and you need time to adjust. I'm not sure you'll get the exact sort of story you're hoping for, at least on this forum. Most of us started on the Pandas forum. Most of us are still in some part of the journey. Most of us have found more than just lyme in our stories (co-infections, mold, pyroluria, methylation blocks, viruses...). So you have to consider what any of us was dealing with in order to not get discouraged by how long it's taken. We're all on treasure hunts. Hopefully, as we discover clues and we share them, someone else's trip gets shortened. With that as a background, yes, my son has gotten remarkably better since starting with our LLMD 15 months ago. But not from abx alone. We've also pursued some of the things I mentioned above. But I have my kid back - a kid I hadn't seen in 3-4 yrs. He may not be entirely done with treatment, but I'm feeling like we might be over the biggest humps and I can finally picture a time when he's done with treatment. I can imagine his getting strep and not going insane. I can imagine a time when my pharmacist isn't on speed dial. (When you see me post now, it's usually about by younger daughter - I know it can get confusing).

What dose would be recommended for DD7 48lbs.? Seeing LLMD on Thur and won't do anything w/o his ok. But curious on dosage for a child.

Under helpful threads there are several links on how to interpret each band...

These were the studies that caught my eye... Resveratrol inhibits proliferation and survival of Epstein Barr virus-infected Burkitt's lymphoma cells http://www.ncbi.nlm.nih.gov/pubmed/21856773 Inhibitory Effects of Resveratrol on the Epstein-Barr Virus Lytic Cycle http://www.mdpi.com/1420-3049/15/10/7115/ Resveratrol, a Natural Antioxidant From Grapes and Red Wines, Prevents EBV-Associated Lymphoproliferation and Transformation through Inducing Apoptosis http://ash.confex.com/ash/2010/webprogram/Paper30795.html Was hoping others would be able to say it works as well in people as it does in petri dishes.

Spent some time researching ideas this afternoon for DDs EBV battle. Using artemisinin for past 3 weeks (now on an off week) but don't see much change one way or the other. Came across Resveratrol and several studies that show it's effective against EBV. Does anyone have any experience? Dosage?

Very timely. This week is my DD7's birthday. Every BD for the past 3 yrs, she has completely lost it. You feel it coming around the new year, it explodes the day we have 6 screaming girls in the house for a party and slowly gets better as spring approaches. She has never had strep. Her Cunningham labs show CamK 179 and sky high antilyso. Other labs suggest chronic infection, possibly lyme, but not a slam dunk. Last year, she responded extremely well to zith and has been on it for a yr. But it hasn't been a "cure". She also responds very well to NSAIDs. But again, not a long term solution. She's less "sick" than her brother and has therefore been harder to figure out. I know she has methylation issues, huge allergy issues, gut issues. I have scratched my head wondering about the seasonality of it. She's tested for low Vit D but supplementing hasn't made a difference. She has high copper and is borderline pyroluria (zinc/B6 deficiency that is a huge piece for her brother). But the zinc/B6 supplement that worked wonders for DS has only somewhat helped DD. So once again, she is blazing her own trail. Heaven forbid the stuff I learned the hard and expensive way on DS could be useful for her. Nope - a whole new set of rocks have to be unturned. She is currently fighting EBV and extreme fatigue and anxiety and I'm re-looking at Carl Pfeiffer's writings on histamine, histadelia, schizophrenia and methylation. If anyone has any ideas or research, would love to hear them. (BTW - teeth cause issues here too - we use an oral abx mouthwash called Peridex from our DDS - really helps reduce gum inflammation and the duration of a tooth "episode").

Some was over my head but thanks for posting!

Milk? But wait - 80% of US antibiotics is consumed by livestock. Why wasn't your EX-pedi concerned about exposure to antibiotics and growth hormones? Make it chocolate milk and then you could be giving her mercury in the high fructose corn syrup. Do you sometimes look back and wonder exactly when we stepped off the planet others still live on?

I will PM you.

Our school system is using three web sites that has a lot of free math tools. Thought I'd pass them along: https://www.xtramath.org/timed drills in addition, subtraction, multiplication and division - based on your child's placement tests and current abilities http://www.math-drills.com/ http://www.woodlands-junior.kent.sch.uk/maths/measures.htm#Time - explore the whole site - good for other subjects as well

I don't think it's heresy to use clinical symptoms as a guide when it comes to lyme & co. I agree with PowPow. I think the body's voice should be listened to more clearly than test results - and that cuts both ways. If you have symptoms but negative tests, well the tests suck and I'd suggest treating (for Lyme, Pandas etc - none of this stuff has reliable testing). On the other hand, if the body seems fine, I think that carries more weight than labs - at least when it comes to PANS illnesses. My only question would be the neuropsych/OCD issues - even tho you're coping with ERP, if you don't think strep is the trigger, then I'd look at the OCD+lab results and give a little more weight to the lyme possibility. It has to be a total picture - there's no single "fact" or clue that can tell you what to do.

My son has had normal BUN and Creatinine levels with abnormal ratios for years. My DD's ratio fluctuates between normal and abnormal but each number separately is ok. Our LLMD doesn't pay much attention to the ratio - he says it changes often in growing kids. Amy Yasko - an ASD/methylation guru, does feel the ratio is important, but I never walked away understanding exactly why (sorry - it's a complex topic and she only touches on it briefly). As a mom, I tend to obsess and have always wanted a normal ratio, but with all the treatment and ever changing medical picture, I've had to just be content that each number by itself was ok. I do think it's worth finding an LLMD not only for the babesia, but also because if he/she has an integrative approach, they often look for contributing factors that could be impeding good health. Our LLMD found my son's issue was zinc/pyroluria - and that has made a world of difference for him. Three years of other docs - no one looked at it because it wasn't a mainstream test. But for my kids, we were chasing our tails until we started using $1.20 in zinc supplements. PM me if you want or yes, post on the lyme forum.

I don't know the medically correct answer to the IgM/IgG question. There is so much conflicting information on that. But here's what I take away from your post - your son has rec'd some potent combo abx treatments. Your doctor has told you it was a good treatment for lyme (not clear from your post if this doc is just a "regular" doc advising you on lyme or if he treats lyme as his specialty - that would make a difference IMHO. Your son is clinically healthy. So if it were me, I would let things be and just keep an eye on things - not for just a month, but put a tickler note in your calendar - 6 months from now, 12 months from now that reads "how is DS re: lyme?". Sometimes symptoms creep in and months later the light bulb goes off and we say "I can't believe I missed that!" Putting something in a tickler note will remind you to take stock periodically. Finally - I think any abx can put lyme into a cyst form and make it difficult to treat. It can also go into a biofilm. So you need to interpret his good health in the context of how long he's been off abx. If it's been a few weeks, be very watchful. If it's been months and he's still good, then I'd breathe a little easier. I think I'd remain alert, but I wouldn't push for additional treatment unless there were remaining symptoms.

I'm so sorry you're being hit with all of this. The financial and emotional stress must be overwhelming. When I was growing up, Cecil B. DeMille had released the movie "Moses", where Charlton Heston learns he's been "chosen" - supposedly the real Moses stuttered, had no education and had a brother who was way better spoken and likeable. Moses was like "What? Are You Crazy?? I can't do this! You've got the wrong guy. It's my brother you want." and God was like "Ummm...I don't make mistakes. You're my guy." I know it feels like you can't do this. That some manic taxi driver will crash into your rental car, you'll get on the wrong bridge out of NYC and end up in Hoboken, NJ instead of Darien, CT and your kids will be in total meltdown before you even get to the office. Maybe all of this and more will happen. But trust that you have what it takes and you will get through it. You're in my thoughts and my own version of prayers.

You got her into a car, a store and she's proud of herself. In my book, you both did great!! Sure, there's probably other ways to do it that don't feed into the OCD. But baby steps have to be built on success. So you gave her a success today. Whoooo Hoooo! I have no idea if the way we do therapy at home is "correct". But it gets the job done. I find it hard to get my head around ERP, probably because we've never worked with anyone on how to do it and you can only get so much from a book, plus my kids have more anxiety than OCD with compulsions. CBT is something that seems to work with my kids' anxiety, so we do that every day. In CBT, helping her get into an "I can do this" mental state is key and you seem to have done that. If you can build on it, that's awesome!

I'm not the resident expert on ERP for OCD -DCmom, Meg's Mom and Nancy are my "go to" ERP people. But we've done a lot of CBT for the irrational fears. We use 3 tools - color therapy, the "so what" sword and the "I'm not arguing with a Fairy" chip. Color therapy is when I tell my kids to imagine a happy color (say, yellow) and to dip their toes in an imaginary bucket of yellow. Then tehy have to breath in deeply, pretending their toes are straws and they need to suck the yellow up into their bodies. They hold it to the count of three, then blow the gray, black and brown worry colors out of their bodies. They keep sucking yellow in until it reaches their heads and until the dark colors are blown out. It's basically deep breathing for relaxation. Once they feel energized/empowered from the breathing, we do battle with the "What If" fairy, which as Nancy says, can never lose an argument. There will always be one more "What If" out of her. So the only weapon that works is the "So What" sword. Every time the What If fairy says "but what if the firemen don't come in time?" or "what if..." you tell the fairy "So what? If the house burned down, we'd still all get out safely and get a new house. Things can be replaced". "What if the smoke detector doesn't go off?" "So what, then the smoke detector down the hall would go off and wake us up." You counter every "what if" with a "so what" - it doesn't stop the endless "what ifs" but it does take away some of the power. By using the words "so what" in front of your counter argument, you deflate the impact of the bad thing behind the worry. You frame it as something you could handle. But eventually, you know you won't have the last word. So when I've done about 3 rounds of this, I stop and say "You know, I've taken your worries seriously and told you there's a plan. Now I'm done arguing with a fairy. I'm done giving her my attention. If you want to waste your playtime giving her your attention, I think that's a poor decision, but I don't have control over that. But I do have control over who gets my attention, and the Fairy isn't the one who's going to get it." And that's as far as I'll go. Now, behind all this is the work we've done on ERP and CBT. So it's not like I'm hanging them out to dry without tools and practice. But it eventually tosses the ball in their court and I disengage. They then have to decide to get serious about doing some of the work without relying entirely on me to "make it all better". Ultimately, they have to participate and stop the thoughts. You can use the book "What To Do When Your Brain gets Stuck" and modify it for younger kids or use the book "Tiger Tiger Is It True" and use it for ERP, tho it's not specifically written for ERP. But both help you make the concepts something they can relate to.

This paper from '08 seems promising for using artemisinin as an anti-viral, tho its derivative, artesunate, seems more effective against CMV and HH6A. http://cid.oxfordjournals.org/content/47/6/804.long Is artesunate a prescription?

Stumbled across this and thought it was very interesting...(bolding is mine) http://lup.sagepub.com/content/21/2/118.full During the past year a new syndrome was introduced and termed ASIA, ‘Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants’.1 This syndrome assembles a spectrum of immune-mediated diseases triggered by an adjuvant stimulus.2 – 4 The use of medical adjuvants has become common practice and substances such as aluminum adjuvant are added to most human and animal vaccines, while the adjuvant silicone is extensively used for breast implants and cosmetic procedures. Furthermore, ‘hidden adjuvants’ such as infectious material or house molds have also been associated with different immune mediated conditions.1,5 The adjuvant effect has been recognized for years, and is broadly utilized to enhance desired antigen-specific immune responses.6 This effect is accomplished via mechanisms that impinge on both the innate and adaptive immune systems.6 – 9 Formerly, adjuvants were thought to pose little or no independent threat. Alas, studies of animal models and humans demonstrated the ability of some of them to inflict autoimmunity and immune-mediated diseases by themselves.2,10,11 Intriguingly, although exposure is common, adjuvant disease is relatively rare. It has been suggested that for a clinically overt adjuvant disease additional risk factors are required such as genetic susceptibilities or the co-exposure to other environmental factors.1 This special issue of Lupus is dedicated to ASIA and contains diverse articles from different geographical areas which provide a broad view of the clinical manifestations as well as the mechanisms related to the adjuvant effect. ... Another cornerstone of ASIA is the complex interaction between autoimmunity and adjuvanted vaccines. On the one hand vaccines are beneficial for the vast majority of subjects including those who suffer from autoimmune-rheumatic diseases as delineated in this issue by van Assen and Bijl.16 On the other hand in a small minority of individuals vaccine can trigger the appearance of autoantibodies as documented by Vista et al.17 and Perdan-Pirkmajer et al.18 Moreover, a link between immunization and defined autoimmune diseases has been reported elsewhere and herein.2 A plausible association between the flu vaccine and polymyalgia rheumatica is reported here by Soriano et al.19 from Italy, and Soldevilla et al.20 describe three patients diagnosed with SLE following immunization with the human papilloma vaccine from the Philippines. In addition, in a retrospective analysis Zafrir et al.21 details common denominators among 93 American patients diagnosed with immune-mediated conditions following inoculation with hepatitis B vaccine.

Stumbled onto this forum while looking for fatigue info - a discussion today on Valcyte... http://forums.phoenixrising.me/showthread.php?15815-valcyte-die-off-or-adverse-reaction&p=235106#post235106

I've been noticing several posts that say their kids are being diagnosed with Hashimoto's Disease or it's being considered. I didn't pay much attention at first. But my DD7 is struggling with a recent/current epstein barr virus that's causing some seriously rough fatigue. You all know that methylation is my current "thing", so I went back to look at some research done by Rich Van Konyenburg, who's big in the Chronic Fatigue world. Attached is a link to his latest published research http://aboutmecfs.org.violet.arvixe.com/Trt/TrtMethylStudy09.pdf His theory: An individual inherits a genetic predisposition (polymorphisms in several of certain genes) toward developing CFS. (This genetic factor is more important for the sporadic cases than for the cluster cases of CFS.) • The person then experiences some combination of a variety of possible stressors (physical, chemical, biological, and/or psychological/emotional) that place demands on glutathione. • Glutathione levels drop, producing oxidative stress, removing protection from cobalamin (vitamin B12) and allowing toxins to accumulate. • Toxins react with cobalamin, lowering the rate of formation of methylcobalamin. • Lack of sufficient methylcobalamin inhibits the activity of methionine synthase, placing a partial block in the methylation and folate cycles. Sulfur metabolites drain excessively through the transsulfuration pathway to form cysteine. • Much of the cysteine is oxidized to cystine because of the state of oxidative stress, and is therefore not available for the synthesis of glutathione. An alternative pathway initiated with catalysis by cystathionine gamma lyase carries the cystine on to form hydrogen sulfide and thiosulfate, and the latter is excreted in the urine. • An interaction (vicious circle) is established between the partial block in the methylation cycle and glutathione depletion, and the disorder therefore becomes chronic. • A wide range of symptoms results from these chronic abnormalities in the basic biochemistry of the cells. • The dysfunction of the detoxication system and the immune system that results from this combination allows toxins and infections to accumulate over time, which increasingly produce effects of their own. • Treatment should be directed primarily at increasing the activity of methionine synthase. The resulting normalization of the methylation cycle, the folate metabolism and glutathione levels will restore function to the immune system and the detoxication system as well as to a wide range of other parts of the overall biochemistry. • It can be expected that die-off of pathogens and mobilization of stored toxins will initially produce some exacerbation of symptoms, but improvements will be experienced as the body burdens of toxins and active infections are decreased. Later in the paper, he describes the tests that were done on the participants. Among them: Thyroid panel (TSH, total T4, total T3) [13]: (performed initially and at 3 months). Thyroid peroxidase antibody was also measured initially and again at 6 months, if found to be positive. These tests were run to document hypo- or hyperthyroidism and to test for Hashimoto’s thyroiditis. Also, it was desired to determine whether the treatment would correct hypothyroidism, as had been reported anecdotally in a small number of cases treated prior to this study. Among his findings: The treatment was not found to completely correct hypothyroidism in this group of patients, though it had been reported to do so in a small number of patients prior to this study. However, the improvement in the values of total T3, the most active effector hormone in the hypothalamuspituitary- thyroid axis, suggests that the treatment did act in the direction of normalizing the operation of this axis.... ...Though there was (mostly mild) initial exacerbation of symptoms in over half the patients, the symptomatic improvement in at least two thirds of the patients was the dominant effect of the treatment. There was a significant decrease (by nearly half) in the average number of symptoms after 6 months of treatment, and significant improvements in all five of the self-rated symptomatic outcome measures. Four of the self-rated measures showed monotonic improvement with treatment time. The rating of overall feeling of wellbeing at 6 months was lower than the value to which it had risen at 3 months, but this decrease was not statistically significant. The fact that treatment of this type produced improvement in the whole range of symptoms experienced in CFS is evidence that the partial block at methionine synthase is fundamental to the pathophysiology of CFS, and this is consistent with the central feature of the GD-MCB hypothesis. And then I went to the Mayo Clinic web site to look into Hashimotos and saw Hashimoto's disease is an autoimmune disorder in which your immune system creates antibodies that damage your thyroid gland. Doctors don't know what causes your immune system to attack your thyroid gland. Some scientists think a virus or bacterium might trigger the response, while others believe a genetic flaw may be involved. A combination of factors, including heredity, sex and age, may determine your likelihood of developing the disorder. Hashimoto's disease is most common in middle-aged women and tends to run in families. So if a virus or infection can trigger hypothyroidism...yet Hashimoto's is supposed to be a middle-aged woman's disease and not a kid's disease, especially a boy's disease...Is it possible the Hashimoto's dx is sort of a "Don't know what it is but I'll stick this label on it" instead of a condition that's being caused by infection-triggered oxidative stress, glutathione depletion and/or something that could be fixed with a few supplements? As I said, I have no experience with thyroid issues. My DD is already on some but not all of what Van Konyenburg suggests and I'll be asking her Dr about doing the whole shebang when we see him. But it made me go "hmmm" and I wanted to put it out there for anyone who may want to look into it further.

A parasite protocol is what really started getting rid of my sons's fatigue (been thru most of this twice now). Then after that, treating his nasal staph pretty much got rid of the rest of fatigue (unless he is flaring). Most of his 'minimal OCD behaviors' (except maybe bedtime) were gone by the 3rd month of treatment (After CORE, gut healing, parasite protocol). He has not tested for Bartonella which may have something to do with this. Son is also on Arteminsin which affects him greatly. Have him on 200 mg a day and pulsing 1-2 days a week at 400 mg. He really feels bad when we get up to 400. Does this treat viruses? Seems like it might. He did take a Glutamine supplement for about 4 months in the beginning of treatment. We did try the B12 shots recently (to help son with fatigue and just feeling good), but he broke out in an ugly looking rash so had to stop. Dr. did not know why he had the rash so now dh uses them (and loves how he feels!-came home smiling after work 2 weeks into using them and is going to continue for now). Best wishes on healing your daughter. Will be interested to hear about the CFS information. Thank you for your input. So I'm a bit confused - it sounds like you've gotten rid of a lot of viral issues and you haven't tested for Bart. I mentioned the methylation stuff assuming that fatigue was a major issue, as it is for us. But doesn't sound like that's the case. I'm not sure I understand why you feel you only have two expensive options left. Sounds like the artemisinin is doing something. Why not test for/treat Bart? What are the issues you feel you can't conquer without Valcyte or GcMAF?