Hopeny

Thank you

Thank you, the hard thing with her is she has had about 70% improvememnt in psych, anxiety and OCD, her bad hip arthritis went way with 60 days of Augmentin/Biaxin, but the other pains are still agonizing. So we have seen improvement, but not enough. It is possible she has congential Lyme and then got a bite in 2010. But prior to April 2010 she was a healthy, happy, outgoing, active child. She has a textbook presentation which my idiot pediatricin missed, fever, headache, leg pain, severe lethargy in April 2010. Heartbreakingly I got the bloodwork copy in Jan 2012 when she tested CDC positive, and saw that in April 2010 she had Band 41 IGM positive and the pediatrician should have retested and treated. In March 2010 there was a severe storm in my town (made the NY Times) and thousands of trees came down, were cut down. I can only imagine how many ticks were in the air at that time.The pain now is wearing her down.

I am thinking now that 400Iu is too low. I am setting up an appt with an integrative, but Nancy could you also PM me your doctor as well? I will also get DD's level checked, I am curious now as to what they are.

Has anyone done this with their child and was it successful? While my daughters major hip pain is gone, and psych symptoms have calmed down, she is in serious pain. We have been hard at it with abx since May, and I can't stand seeing her in pain like this. Her LLMD wants to give orals more time but I am wondering if we should discuss this topic again. Her case was missed by about 2.5 yrs, pain and psych are her main symptoms. She also has PANDAS complicating things.

I am sure this is not going to win me parenting award of the year have resorted to rewards for blood draws for my 8 yo. Now that DD's general anxiety has lessened its much better but if I promise a small toy it seems to make it much easier. Honestly I feel so *&^# bad for what she has been through, I like to indulge her in this small way

I totally agree its hard to know what is helping the progress, multi vitamins seemed to make DD worse so I had her off all supplements. She was slightly low on Vitamin D, tested in March when things were really tanking, her level was 27 on a range of 30-100. I just recently started giving her one chewable kids tablet of D3, after reading a link about Vitamain D and psych stuff, every few days. She has definitely gotten to a better place mentally since we started but that could also be other things too. I am really curious to see how much progress she will make when we start working on methylation for her single copy 677T mutation, I haven;t been focused on it because she has only one copy however even 30% impairement i am thinking could be a big difference for her . I also just bought some Vitamin D for myself to see if I feel any different on it.

Accupressure is another thing to consider, it involves rubbing with tools, which she may not like either, but no needles. There is also something called Moxabustion which involves a small amount of heat, I have found that very effective with my DD, no needles, My insurance covers a portion of it.

Thank you, in our case DD does not have epilepsy and she did not forget the incident, just the meltdown, hysterics and anxiety fully resolved in 30 minutes after taking the Vitamin. She talked about it today but like any regular kid, without overwhelming anxiety or obsessiveness. I will continue the Vitamin D and just will be hopeful that we have turned a corner and she is better able to manage. She refuses to take Motrin, perhaps Vitamin D has some anti inflammatory effect.

Yes! My friend's son has Lyme, Bart & Babesia and only has physical symptoms, fever, headache, malaise - no real joint pain, no neuro or psych issues. My DD has Lyme and tests negative for Bart although we suspect it and has psych symptoms and joint pain, no fevers.

DD8 is Vitamin D deficient, has Lyme & Co, PANDAS, High Myco, MTHFR 677T and an immune defense deficiency. Since reading FCFXER post on Vitamin D and psych issues I started giving DD one kids chewable 400IU Vitamin D tablet ocassionally. I am working on getting her to an integrative to work on Methylation. Since she is about 75% improved from her worst time, and she is on full strength abx, it is hard to measure improvement however the Vitamin D did seem to be helping with her anxiety, obsessions and sadness etc. Today she (OMG)decided to open her window and sit on the sill while a playdate was over to cool down, the screen went crashing two stories and thankfully an angel held her from falling. Of course I had a long talk/yell with both of them, and DD started total meltdown hyperventilating etc. I finally calmed her down, when playdtae left she totally fell apart again, saying stuff like Life is pointless etc. After maybe 1.5 hours of this, knots in my stomach again, I decided WTH to give her a Vitamin D, and in 30 minutes a different (or should I say my original pre all this kid) came downstairs, laughing in a great mood the rest of the day/evening even talking about other parts of the playdate which was a very long one. It was like the past 4 hours hadn't even happened. Is there any possibility that this could have been the Vitamin D????? Or is she just continuing to get better? I have never really seen her recover like this before. How much D are people using? Should I start daily? It seems unbelievable that Vitamin D could be so powerful, could it be?

Wow that is so scary. My DD has not had any RMSF symptoms, so the doc was very reluctant to treat her with Doxy, he gave her six weeks of high dose amox for the bullseye. She has an immune problem to begin with so I am doubly worried this could turn to something bad. I asked him how many patients he had with RMSF + and he told me about 4, so although I do like him, not any real expertise there! His point was since it is IGG it is not active, but they don't really know IMO and something I saw on CDC site said titers start low and increase fourfold. I pushed and he agreed to 3 days of Doxy for her. She has an appt with Dr J in Nov,will do the Advanced Labs blood test for spirochetes and rerun the RMSF test. In the meantime if she gets a fever it is going to be very worrisome!

I am so sorry, how awful for your dsughter and your family. Do you think the tindamax busted cysts up and somehow reactivated the Lyme? While we have not been to Rothman I think its absolutely worth trying, there is little risk as from what you describe the situation is quite severe, and lots of possibiity of upside. Importantly it will give everyone hope. I am vieing Lyme/PANDAS healing in a holistic way, need to work on mind, body, soul, spirit - all areas have to heal. Sending you lots of good thoughts and prayers.

Thank you both, I am not terribly worried about her teeth, but more about some other issue. hubs and I agreed, caps all the way for the kids if they end up that way. Everything says no Doxy for young children but it doesn't say why except the teeth. I am just worried if there is something else bad about it. Philamom I called Dr. J's office, great tip thank you, unfortunately he won't do phone consults for new patients but they did give me an appt in November versus January, well worth the call. It is interesting what you wrote. My daughter's titer is low + but I read somewhere that the titers can increase by 4x in a short time. What is really freaking me out is that the CDC who IMO barely seems concerned about Lyme states that regardless of age all RMSF must be treated with Doxy. After all the suffering with DD8, I can't take the risk of DD3 not getting well. Just reading about the side effects of RMSF makes me go cold inside. I will see what our interim doc says tomorrow but I have pretty much decided to try the Doxy.

When I took my daughter for her first Lyme appt I was so relieved I started crying. I felt similarly as well after seeing Dr. B. Enjoy your rest!

My 3 year old had a bullseye pop up on her arm in August. I got her on Amox the night we found it. I just her Quest bloodwork back today and she came back low + IGG for Rocky Mountain Spotted Fever She has an appt with Dr J in January. In the meantime I am taking her to a middle of the road pediatrician/ID doc for this issue. She also has an immune deficiency. My older DD with chronic Lyme is + for RMSF too. So I went back and did some re-reading and EVERYTHING says, even CDC, it MUST be treated with Doxy regardless of age. The ID doc was on the fence on the phone, we have an appt Thursday, she has not had a high fever but has been hovering around 100. Her eyelids blew up a few weeks before the bullseye, one after the other, I thought it was mosquito bites. After reading everything I read I am convinced she needs to take Doxy but I am petrified. My sister called the CDC and they said 7 to 14 days of it. Has anyone used it in such a young child?

http://www.blumenthal.senate.gov/lyme-disease

I do believe it is possible to gain expertise on complex processes through intensive study. In medicine, non MD's even train MD's. At the ripe age of 26 or so I was runnng training sessions for neurologists on equipment I was selling, of course along with other MD's. I do agree that a degree of skepticism is extremely important. Unfortunately as LLM writes we have not been able to find practicioners who are alone capable/willing/knowledgable enough to cure our children. I would personally love to return to my "day job" and never lurk on any of these boards again, but I simply can't until my daughetr is better. I am hopeful that day will come and grateful to all who are willing to share their knowledge, experience and ideas with the common goal of healing. I find all contributions valuable, even if they are contributions that I am skeptical about, it's important to learn what not to do along with what to try.

My DD has the bugs crawling symptom from Lyme. From what I have read on the internet there are few things that can cause that, so it seems worth looking into Lyme a bit further

I'm trying to figure my 3 yo out, normally i post about my Lyme/PANS 8 yo. DD3 has an immune issue called mannose bilding lectin deficiency (DD8 has it too but not as bad), actually she has no MBL. MBL in my super layman's understanding is the linebacker, its the first line of defense to hold virus/bacteria in place before the immune system kicks in. This leaves both DD's super open to infection and at risk for Hashimotos. In a nutshell DD3 shows very high EBV, IGG3 abnormal, ASO normal and myco IGG close to normal mildly elevated. She just had a bullseye rash this summer and is being treated for Lyme. I just got additional bloodwork back from a well known immunologist (not Dr B0 who I find difficult to work with so I may bring her to Dr B. Her WBC is just at 6 which is the absolute bottom number of the range 6-17. Her Absolute Neutrophils are low at 1374 on a range of 1500-8500. I did some internet reading and just got myself freaked out. We have a new open minded ped but don't see her until October and she is out on leave now, I don't feel like calling any of the other doctors and explaining myself again to them so I am just waiting on the ped to come back. Should I take her to a hematologist? Anyone have experience with the low ANC count?

Just want to agree that to disregard Lyme is not good advice. Take it from someeone whose kid is in Lyme h&^%. Lyme in most cases does not get better without aggressive treatment. Actually it gets much, much worse. Not to freak you out or sound too alarmist but the Lyme bacterium is a spirochete that multiplies and literally invades the body, it can cause problems from headaches to vision issues to suicidality to even paralysis in some extreme cases. My daughter is in month five of treatment and is still in significant pain. If your child has Lyme they also may have co-infections, which can be even worse and may require different types of medications. I am pretty shocked that a non mainstream doctor gave this advice, even my ignorant pediatrician treated my DD when she first tested positive. Regarding the bands, this is outdated CDC advice - 3 igg bands can be significant, and in any case Lyme dx is a combination of a clinical diagnosis and blood work. In her book Cure Unknown Pamela Weintraub gives a detailed background on the testing, the bands, why the guidelines are wrong and the conflicts of interestd of those that developed the guidelines.

My youngest has sensory issues and so have had EI and now CPSE OT and PT therapy. When I have to write up one of those forms I always put in something that I love about her, like I begin with R is sweet, adorable and loving. It makes me feel better and I want the person reading it to know she is really loved. Regarding your husband, I can only empathize with you. When the smoke clears there will be an opportunity for a better, happier life.

Thanks. Our oldest units are 2 or 3 years old. I think my DD with the asthma's unit is 3 years old. Wow this is a huge endeavor. We have a permanetly installed unit in our basement, now I am concerned about it. It is almost never turned on but it sits close to ground level ugh.

I have a window unit in my shop. I regularly soak the floor of the unit with hydrogen peroxide. I then also spray the internal blower and internal housing. I also spray the fins. Now I do it after the sun is down as sunlight breaks down H2O2 rapidly (hence the brown containers it comes in). H2O2 directly breaks down mold into its constituent chemicals. What that essentially means is that it not only kills the mold but then it breaks down the toxic spore which is no longer toxic. When I pour the H2O2 into the pan of the A/C unit you can hear it sizzling as it breaks down organic matter. You should wear a paper mask so you do not inhale the spray. I often wash the pan out with soapy water after I let the H2O2 do its thing. I then run the fan on the unit until dry. Red So Red I spray the H2O2 directly into the unit at night, and then blow the fan? for how long? remove the filter when I do this or leave it in? and this is dumb but I guess even though the H2O2 is wet, it won't grow mold? thanks. DD also has mild asthma so this is always an area of concerrn.

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG. Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results? I do not know if mino is like doxy other than they are both ABX. My doctor prefers mino as she feels it pass the blood/brain barrier better than other ABX. Also, doctors are usually hesitant to give doxy to younger children (my son is now 14). I asked her again about doxy last visit and she indicated that there is nothing magical about doxy in the treatment of lyme. She also likes this combination (azith/mino) as it will treat lyme/bartonella and pandas. Doxy also has some nasty side effects especially with sun sensitivity. Not a good solution for a child. My son was diagnosed with both Pandas and Lyme and eventually with CVIDs - common variable immune deficiency. I think it's probably more accurate to say that the IVIG was prescribed for the ongoing neurological conditions. Primary symptoms in rough order they showed up - rage, dilated pupils, physical/dystonia, loss of math skills, and OCD over the course of say 6 years. The dystonia/loss of motor skills has been a huge symptom with my son. My son just completed his 6th IVIG. We have seen various levels of response to IVIG, all of them either distinctly positive or somewhat positive. My son does not slide back like many do. At worst, his hands tremble for a couple of days and this past time his left foot/ankle became very tight/jumpy but I do not really consider those sliding backwards. Prior to treatment his left foot/leg in particular were very tight to the point I could not move the foot/ankle using two hands and a lot of force! He even had botox at one point to relieve the tightness. Several months on ABX loosened the foot/ankle, IVIG has helped. I think we saw the greatest gains on the first and second IVIGs. After the first one his mood/behavior improved tenfold. It was already great - in comparison - after being on ABX for many months but the IVIG really jumped it forward. After the second IVIG we saw a great improvement in his schoolwork. He can do math again! He's not likely to major in math just yet but he gets it again. (His dilated pupils returned to normal after 4 months of ABX.) Since then the gains are more subtle. He continues to make progress though slowly. OCD is still hanging on. I think though that he needs to make more of an effort to get over the last of the OCD. We are really rewarded when someone we haven't seen in a long time sees him and can't get over how good he looks now. Per the doctor , he (now) feels that my son is ahead of schedule and will likely need a dozen or so IVIGs total. It is interesting that the doctors are changing their opinion with time. I can tell you that when we first started IVIG last year, he (Dr. did not seem to have as much experience with the lyme patients, especially with the likes of my son with a primary symptom of dystonia. The doctors are all still in learning mode. I also want to point out that we chose to wait 10 months after starting Lyme treatment for the first IVIG. It makes sense to me to get the infections under control before one tries to correct the immune system. We knew the ABX were working because of the lessening of symptoms. At 10 months, it seemed like progress had halted so we began the IVIG. Perhaps IVIG will shorten his recovery time. Thanks wow I really wish you continued improvement for your son. In addition to Lyme/PANDAS I have no found out my daughter also has the same immune issue my younger daughter has, essentially she has limited immune linebackers so will always have a delayed immune overresponse. I also just read a paper suggesting IVIG for Lyme so it has me thinking. My DD has different symptoms than your son, leg pain and some OCD, on again off again depression. We are in month 5 of treatment and I have set a mental reassment date of 12 months and have IVIG on my radar. What I have understood /thought so far was that it does not work that well in Lyme kids but maybe the idea is to go to a long abx treatment before trying. BTW I think Mino is a cousin of Doxy. I know my LLMD gave me a handout on it. We had DD on Doxy for 60 days and to tell you the truth it seems like Biaxin/Augmentin does a bit better. However the first time she did Doxy, 5 day course , it was like a miracle.

A brief history my 8 yo daughter seemed to become suddenly depressed and withdrawn, I thought it was due to inhaled steroids for asthma so we took her off but took her to a psychcologist. She seemed to improve off the steroids. Out of the blue one day, she started to mention suicide. we were referred to a psychiatrist. Then we got the Lyme (&Co) and then Mycoplasma, PANDAS dx. DD also has one copy MTHFR 677T, I mention this because I understand it may impact Serotonin. She had a brief improvement on amox and then tanked off it. ID doc put her on high dose amox and she spiraled downward for 17 days, a ball of anxiey, obsessions, suicidal begging to die, tellng me one day she thought her clothing was going to hurt her etc. (a pretty low moment in my life ) We had some ups and downs like this and psychiatrist (PANDAS familair but not expert) emphatically recommened 10 mg of Zoloft to dose up to 20 mg. DD is 64 pounds. At the same time started Augmentin/Biaxin. Literally the same day. Saw HUGE improvement in a few days. Skin picking went away. Obsessive thoughts mostly gone. Was not sure if was abx or from Zoloft, even though they say it doesnt work that fast. After maybe 4 weeks, I noticed she was massively overheating, and I mean scary like I was thinking we need to go to ER. She came home from tennis one day and told me she couldn't stop shaking. The psychiatrist insisted it was not Serotonin Syndrome but I had had enough. Not sure how old your DD is, but that is important to weigh too. These meds are really experimental in children especially under 12, and the effects/dosage can really be unknown. So if the risks outweigh the benefits, as they did for us at the time, there is not much of a choice, you need to give your kid the medicine. However if you see improvement without, and your child is not in danger, I would consider trying the abx route first. BTW I don't know why but Biaxin seems to be of particular help, when I stopped it for 24 hours because DD had a stomach ache, the obsessions came back. In our case fortunately DD seems to be ok and improving without psych meds. Regarding the therapy question, each situation is different. My leaning is to stick with the one your daughter likes if you think they are competent, and if they are open to learning about PANDAS and understanding the medical component. Your daughter will make more progress if she is comfortable with the person and it will make it easier for you to get her there and get her help. My daughter did not like the psychiatrist she was seeing (although generally I did) and I found she actually got worse/agitated when she had a session. Ditto for another social worker and psychologist she saw, it ended being another annoying Drs visit for her and she would protest before and after and said it made her feel worse etc. I ended up finding a center that specializes in CBT and while the psychologist I found has no experience with Lyme and some with PANDAS, she specializes in kids with chronic illness (Lupus) and she really, really really gets it. DD cannot wait to go to the sessions and we are early in but she is making progress(this is a complete 180). In my intake with the psychologist she told me "she is probably really tired of being poked and prodded so I am not going to do that." This was exactly what DD was complaining about with the previous psychiatrist, asking her too many questions! After the first session with the new psychologist DD said "Mommy if she asked me any questions, I didn't realize it. Can I go back?" If your daughter does not trust the therapist it will be difficult to make any progress and could do more harm than good. Good luck these are very difficult decisions to make. Let your intuition guide you.