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maybaby

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Posts posted by maybaby

  1. I struggle with the Cunningham Panel test as well. After years of doing other blood work tests (strep, lyme, mico, etc.) and getting mixed results, I did the Cunningham Panel test for my DD (12) last year. She did come back elevated on the Anti-Tubulin and CAMK ranges, but nothing changed in her treatment approach with my PANDAS doctor (who is a psychiatrist who treats PANS/PANDAS). Since we don't really know the exact infection that caused the elevated ranges, we're still trying various supplements, antibiotics and herbs to tackle it. My PANDAS doctor has never indicated that certain ranges on the test determine specific treatment options. I haven't even told my daughter's pediatrician about the Cunningham Panel test b/c she does not believe in PANDAS and feels the PANDAS doctor I'm seeing is not very credible. I'd be curious if other people out there who see very reputable PANDAS doctors at hospitals have any input here.

  2. I have found my 12 yr old daughter's executive functioning became worse on Prozac. She is currently only on 5 mg to help with OCD, anxiety, and restrictive eating (which have all been greatly helped by the Prozac). 

    My doctor believes ADHD traits (poor executive functioning, impulsivity, mood changes) are a result of brain inflammation. Consider some vitamins/herbals to help with the remaining neuro-inflammation. We just started a new treatment- Synapsin. You need a prescription for it and have to order through a compounding pharmacy. After just one week, I've noticed marked improvement in her mood swings and alertness. It may be worth a try.

     

  3. My DD took this supplement for a year when she was 9 and weighed 50 lbs. She took 2 pills in the morning and 2 in the afternoon (you don't want to take it too late in the day b/c of all the b vitamins). I was told you had to treat yeast before taking it (can't remember exactly why...maybe because b vitamins can increase yeast)? It did seem to help her mood. I think we dropped it after a while because we wanted to try alternative treatments, and there are only so many pills she could swallow in a day. I don't believe you can open the capsule. It has to be swallowed.

  4. I was recently listening to some of the Autism One videos from last week's conference, and wanted to pass along the link for those interested. My DD has PANS/ADHD/Anxiety diagnoses. Although I don't have a autistic child, I feel a lot of the speakers at the yearly Austin One conference have important messages that can be applied to a variety of childhood disorders. You may want to listen to Dr. Rosario's Trifletti's video titled "Rosario Trifiletti - PANDAS/PANS as a framework for understanding vaccine reactions and autism" (the video is located under the Saturday list of seminar speakers).

    My daughter has been taking the BRAVO probiotic for two years, and it has been, by far, the best thing we've done for her to help build up her immune system. The inventor of the probiotic, Dr. Marco Ruggiero, is also a speaker at the Autism conference. 

    I hope this helps anyone who is interested in doing some research!

    https://www.youtube.com/user/autismonemedia

  5. Would like to know so we could know which direction to take with treatment. Symptoms are relatively mild right now, primarily jumpiness/impulsivity/silliness (looks ery much like adhd, but I know my daughter doesn't have adhd), mild insomnia and lots of food restrictions. But we've had tics, stuttering, anxiety, meltdowns, rages, agression in the past, these seem to be mostly resolved but still rear their head every now and then, especially after an illness or when tired...

     

    I know we can just cut out wheat as a trial and see what happens, but because of the food restrictions I don't want to go down that route without a little more clarity. Been contemplating GAPS/SCD but hesitant for the same reason.

     

    Would really like to avoid abx if at all possible... Would appreciate any insight.

     

    My DD had similar symptoms at that age. She was also severely constipated and was a very slow grower. We eventually figured out it was lyme causing these symptoms.

     

    My recommendation as a starting point it to work on toning down the inflammation in her body and getting the gut in a good place. I would cut out gluten and incorporate some good probiotics. I didn't completely cut out dairy b/c I needed to add some of that fat in her body (plus she was a very picky eater). I tried to give her as much protein, vegetables, and some fruit at every meal. The GAPS diet was too overwhelming for our family to incorporate (although I do think it's a wonderful approach to healing the gut).

     

    Have you considered testing her for celiac? Celiac can mimic ADHD symptoms. We tested out DD with both blood test and had her scoped. She came back negative, but we still cut gluten out and saw immediate benefits (she felt better, ate more food, and was calmer). We also began the BRAVO probiotic yogurt and saw major improvements. The colostrum in BRAVO reconstitutes the gut. After a year on BRAVO, we felt her stomach was in a much better place to begin treating for lyme.

  6. Thank you for your replies! I have read some of Dr. Phieffer and Yasko's works, but I will go back and dive deeper into them.

     

    LLM- I really appreciate your detailed reply. I'm going to research all of your suggestions and see what we can include in her daily protocol. My daughter has had restrictive eating problems and constipation since birth. She is very low on the weight/growth chart and some years wasn't even on the chart. The only thing that helped her to gain weight was BRAVO yogurt. Within the first two months, she gained 6 lbs and continued to put on another 14 lbs the following nine months. Somehow the colostrum and GCMAF within BRAVO helped tame the inflammation and regulate her bowel movements. We also went gluten free and are low dairy with her. So, she eats a ton of eggs and meat. I won't remove these from her diet, so tackling her CBS mutation with supplements is the only way for us to go.

     

    Also, your point about detox vs. inflammation is so well said. I have been hesitant to continue with our epsom salt baths for detox knowing she is CBS +/+. We are currently treating her lyme with just Beyond Balance herbs (and a few other vitamins like zinc, lithium orotate, fish oil, and gaba/l-theanine for anxiety). We may go back to antibiotics once school gets out. While I'd like to move over to Buhner, my LLMD tells me it's too much work plus the BB herbs have a palatable taste. The only problem with BB is you don't know what is working and what isn't with an herb combo. Maybe I'll just experiment with some of the Buhner herbs on the side...

     

    I also wonder if activated charcoal can help with the CBS mutation or something like it help bind to the toxins and soak them up?

  7. Every time I try to discuss methylation with my DD's LLMD, he tells me not to worry about it b/c treating her lyme is the big focus. My gut tells me that I need to consider and address her methylation results, especially as we continue to detox during her lyme treatment. My DD is constantly in an emotionally restless state (we never know when we're going to have a good or bad day). Her tics, rages, and ability to be and feel " calm and present" wax and wane with her medical treatment. Here are my concerns re: her 23 and me results:

     

    Detoxification:

    CPOX4- GT (1/2)

    CYP1A1- CT (1/2)

    CYPD2D6- AG (1/2)

    GSTP1- AA (2/2)

    NAT2- AG (1/2)

     

    Neurotransmitters:

    COMT V158M & H62H +/+

    DAOA- AA (2/2)

    GAD1- AA (2/2)

    MAO-A +/-

     

    Folate One-Carbon Metabolism/Methylation:

    CBS C699T +/+

    CBS A360A -/-

    MTHFR C677T +/-

    BHMT-02 & 08 +/-

     

    Endocrine:

    VDR BSM & TAQ +/-

     

    I've done nutrahacker and tried to read (with many failed attempts) the Heartfixer document. I'm most concerned with her homozygous CBS, COMT, DAOA, and GAD1 (high glutamate/low gaba) mutations. I also can't figure out if she is an over/under methylator. I don't know what to make out of her detoxification mutations. When I showed the doctor her 23 and me results, he said to "watch out" for histamine???

     

    I'd love any advice you have to point me in the right direction for how to interpret her results, recommended supplements and a treatment protocol.

  8. I've done research myself on Band 41, as my DD only tested IGM: 31+, 39 IND, 41 IND and IGG: 41IND on the Igenix test. You are right that Band 41 indicates the presence of a flagella spirochete in your system, which can't be good! Based on my DD's Igenix result, I was skeptical that she had lyme, so I did further testing.

     

    So, I recommend further testing. We did the DNA Connextions Lyme Urine Test. You can order it directly and have the results sent to you. Their test is quite accurate, since they use a sensitive technique called PCR. It will test for lyme and some co-infections (babesia, bartonella, etc). You can even have the results rushed and you'll find out within a few weeks.

     

    BTW- I also tried 8 weeks of just Azith with my DD last year. I was shocked to see such a negative reaction from her. She became very emotional, mean, unable to focus, and was unable to feel calm/centered. I stopped b/c my LLMD told me I needed three different type of antibiotics to treat lyme and I couldn't emotionally move forward with adding two more. So, we switched to herbal treatment. We are still treating her with herbs. We tried going back to antibiotics recently but she has such bad herxes that we just can't do it during the school year. We may try again this summer....

  9. We determined late middle school that our 2 kids have PANDAS. We had great difficulty identifying an M.D. familiar with PANDAS and spent a number of years attempting to convince pediatricians to treat our kids. About 2 years ago, we attended the Midwest PANDAS conference in St. Louis and finally located a physician willing to take us on. She has been PHENOMINAL and has treated both my kids for PANDAS and Lyme Disease (we discovered my daughter had Lymes about the same time we uncovered the PANDAS. Our St. Louis M.D. uncovered Lymes for both my son and myself). She is in the St. Louis area and we live in Wisconsin. She has kept both of our kids on a prophylactic dose of penicillin to stop them from getting strep while aggressively treating their lymes. Immediately proceeding our initial appointment she ordered an array of tests (including blood, stool and urine tests) to look at a broad range of markers – never assessed by any of our prior physicians. Additionally, 1 week prior to each of our quarterly appointments she orders a complete set of labs to assess our overall progress and rework our med/supplement plans.

     

    Unfortunately she is now closing her practice and we have had to locate a new physician. Fortunately, with her help we have identified a new physician who should be able to pick up where she left off. He is in Ohio, but we will make it work, because we truly believe a knowledge base regarding both PANDAS and Lymes is optimal – given the progress we have made since identifying a PANDAS/Lyme M.D. neither one of my kids have had a PANDAS outbreak and a number of their Lymes symptoms have dissipated.

     

    Our St. Louis M.D. advised us to search the directories of the following resources to identify a new physician:

    http://www.pandasnetwork.org/research-resources/us-providers/

     

    http://www.medmaps.org/clinician-directory/

     

    http://ilads.org/ilads_media/physician-referral/

     

    We searched the sites for M.D.’s and came up with the following options:

     

    WISCONSIN

    Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory

    http://www.wisconsinhyperbarics.com/kylevan.html

     

    IOWA

    Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories

    http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/

     

    ILLINOIS

    Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories

    http://www.truehealthmedical.com/the-practice

    Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory

    http://webpediatrics.com/practice.html

     

    Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory

    chicagointegrative.com

    http://www.chicagointegrative.com/raden_bio.html

     

    Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory

    http://www.georgiadavismdspringfieldil.com/

     

    Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory

    http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549

     

    OHIO

    Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician,

    Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.”

    www.drdemio.com

     

    After going through this process we have decided to go with Dr. DiMio in Ohio, an 8 hour drive. If he can truly pick up where our St. Louis doctor left off we believe the traveling is well worth the time and cost.

     

    Finally, I can tell you that PANDAS falls under the classification of encephalitis, so the doctor you noted may very well have some insight to provide. If she is geographically close, check her out while you check into some others that may understand both issues.

     

    Good luck!

    I forgot to mention that my post above is in response to Ryan's list of doctors.

  10. We saw Dr. K once. He does not treat lyme. We did not really click with him. My DD begged me not to take her back to him.

     

    We have seen Dr. R in Illinois for the past 4 years. He is fairly new to the world of PANS and lyme (started 2 years ago). He is an integrative psychiatrist who began treating patients with PANDAS/PANS/LYME/etc. after finding that a lot of his patients weren't getting better on traditional meds for anxiety, OCD, etc. He is great at researching the latest medical options and working hard to find the source of the problem. He is very responsive, and does do conference calls.

     

    I have looked into Dr. Usman, but that last time I checked she had a 9 month wait list. Her rate was $550/hr. I'm not sure if she treats lyme.

     

    Hope this helps.

  11. We're currently treating lyme for my daughter, so I can't speak to treatment for all PANS symptoms (there are much more knowledgable people on this board). However, my daughter's anxiety/irritability always get a lot worse with a loose tooth. When this happens, dosing Motrin in the morning and again before bedtime is the only thing that helps us.

     

    Also, my daughter's tics get worse on the start of any new antibiotic b/c she experiences a herx from the lyme bacteria die-off.

     

    If you want to test for lyme co-infections, I highly recommend the DNA Connexions test. This is the description on their website: The Lyme panel tests for 4 different genes that are found in Borrelia burgdorferi, the most common cause of Lyme disease in the United States, and 8 common Lyme disease c0-infectors including Babesia microti, Babesia divergens, Babesia duncani, Bartonella bacilliformis, Bartonella henselae, Bartonella quintanta, Borrelia miyamotoi, Borrelia recurrentis, Ehrlichia chaffensis and Anaplasma phagocytophilum. Testing of Lyme co-infectors (other tick-transmitted organisms) indicates likely infection with the Lyme spirochete as well.

    A positive PCR result from the DNA Connexions Lyme test indicates the presence of DNA from B. burgdorferi and/or other co-infectors. A negative result does not prove a patient is not infected with a tick borne infection, rather it indicates the absence of detectable Lyme and/or other tick borne co-infections. A patients ability to fight the disease, stage of infection, and timing of courses of antibiotics are only some of the factors that may affect the detectability of the spirochetes DNA.

     

    http://www.dnaconnexions.com/Lyme-Panel-Test-DNA-connexions.html

     

    Cost is $500 and you can have the results rushed and sent directly to you.

  12. I can always tell when my daughter has a candida/yeast problem because she gets very silly/loud after she eats. Her stomach will also become distended and she'll have increased gas after meals.

     

    We've also done the stool test by Genova Labs. The OAT test is helpful diagnostic as well.

     

    Here is link that helped me to understand yeast symptoms: www.tacanow.org/family-resources/what-is-yeast-overgrowth/

     

    When we see a yeast problem in her, I usually just treat with Nystatin (although we go through a whole herx reaction and have problems with increased silliness, lack of focus, and poor sleep for the first few weeks of the Nystatin treatment).

  13. For the past year, we have been treating my 10 yr old daughter with just herbs (Beyond Balance products: Cognease Detox, Cyflacalm, MC-BB-2, MC-BAR-1, and MC-BFM-P) to treat lyme. I saw a big improvement in her neuro symptoms (7/10 in her overall behavior compared to the prior years). Her doctor convinced me to switch to antibiotics in order to fully "tackle the lyme" after her most recent lyme urine test. We started one month ago with 300 mg Cefdinir/daily and pulse 250 mg Flagyl on Friday/Saturday/Sunday for cyst busting. We try to detox with aka seltzer gold, lots of lemon water, and epsom salt baths. The first twelve days, my daughter severely herxed and could hardly hold a conversation, sit down, sleep, or eat. Things have *slightly* gotten better, but she still has bad anxiety, cries easily, low appetite, poor focus, and a general feeling of restlessness. We're supposed to start the 3rd antibiotic next week (Azith), but I know her body can't handle it just yet. I'm also still giving her all of the Beyond Balance herbs.

     

    So, how long in your antibiotic lyme treatment did you see your child's symptoms improve? I am at the emotional point where I want to just drop the antibiotics and go back to herbs. Or, maybe try a different herbal protocol. So, I'm looking for any guidance/success stories in sticking with antibiotic treatment. Her doctor says 3-4 months is the usual protocol, but I've read you need to stay on antibiotics for two whole months after all symptoms have resolved.

     

    Thanks in advance for any input ;-)

  14. I'm currently treating my 10 yr old daughter for Lyme only using Beyond Balance herbs. We are taking the "low and slow" treatment approach with her. I ran out of the herbs last week (Thursday) and re-administered them last night (Monday). She wet her bed in the middle of the night and woke up this morning full of rage. The bedwetting has not been a problem for us for a number of months (since we started the herbal lyme treatment four months ago). So, it now has me wondering...what is the connection to Lyme and the bladder?

     

    I went searching for an explanation this morning on the Internet, and this was all I could find: "the organ that the spirochetes are found the most in is the bladder".

     

    Does anyone have an explanation re: the connection between Lyme and the bladder?

  15. This article is referring to Ruggerio's BRAVO probiotic yogurt. My 10 yr old DD has been taking this yogurt for the past 9 months. She is not autistic, but had an original diagnosis of ADHD/ODD that was changed to PANS this past year after completing various blood work. While taking the yogurt, we have seen some great benefits:

     

    • Weight gain (15 lbs in 9 months) whereas before she had gained one pound in two years. She wasn't even on the growth charts.
    • Increase in appetite
    • No more #2 accidents or constipation
    • Much more verbal in expressing her feelings
    • Less tantrums/rages and happier overall (whereas before I would describe her as moody 85% of the day to the point where a doctor diagnosed her with DMDD)
    • Increase in concentration in school work

    We are still struggling with PANS symptoms of anxiety, occasional tics, and urinary problems that we're treating with herbs and vitamins. She also has some degree of impulsivity and lacks social cues (though both areas have gotten better while taking the yogurt). We only have restrictive eating during a herx reaction to new treatment methods. I'm not sure how much longer she will continue to take this yogurt, as it is expensive.

     

    For anyone who is interested, below is a link to Ruggerio's Autism One presentation explaining the science of Bravo.

     

    http://www.autismone.org/content/marco-ruggiero-md-phd-swiss-protocol-integrated-protocol-treatment-autism-spectrum-disorders

  16. We are treating my daughter's microplasma with herbs, specifically the ENL-MC herb by Beyond Balance. This product is designed to target microplasma. My DD has too strong of a herx reaction on antibiotics, so we can't experiment with them anymore during the school year.

     

    You need to find a practitioner who can prescribe the Beyond Balance products. So far, I've been impressed with the product line as we also use the Cognease Detox drops which was formulated to aid the body in detoxifying the neurological system.

  17. We did the Igenex lyme test for my DD and she tested positive/IND for a few bands (IGM 31kDA +, 39 kDa IND, 41 kDa IND & IGG 41 kDa IND). Her doctor then ordered the Ceres Nanotrap Lyme Antigen Urine test. He believes the test has a 99% accurate diagnosis for lyme. The test results came back negative.

     

    Has anyone else done with Ceres Nanotrap test? Are there other Lyme tests you would recommend?

     

    For now. I'm discontinuing her lyme antibiotic treatment (even though the 8 week of antibiotics significanty reduced her tics/impulsivity/rages/etc.). But, I want to make sure there aren't other lyme tests I should consider.

  18. We tried every ADD stimulant medication on the market for my DD as well as Straterra (non-stimulant) and Intunive (blood-pressure med). My DD was so sensitive to all medications that even the lowest dose had side effects. Everything increased her tics and made her anxious.

     

    If you do want to try a stimulant, I recommend the Daytrana patch. With the patch, I was able to cut it into 1/4's so that I could control the dose and give her a tiny amount (only 2.5 mg from a 10 mg patch...which 10 mg is the lowest dose). I also like that I could put in on and take it off whenever we liked.

  19. Thanks for your replies. Per her doctor's recommendation, I started my daughter on 3 ML daily Azithomycin last week (Thursday). The first two days, she had bedwetting and urinary incontinence during the day. Her behavior has become significantly worse. Her doctor says she is having a herx reaction. She has had major meltdowns, severe impulsivity, increased brain fog, and anxiety. I've received a few concerned phone calls from the school over the past few days.

     

    We live in the Chicago area. I have an appointment with Dr. K next week. I read about him through this forum, and was lucky to get an appointment with him. I know he is a PANDAS expert, but does he also deal with lyme? For those who know him, any advice for how to prepare for the appointment?

  20. Hi. Given your experiences and expertise, I’d like your help re: my daughter’s diagnosis. She was colicky at birth and always anxious/impulsive. At age 6, she was diagnosed with ADHD. She has always demonstrated anxiety, some OCD traits (picking her nails when nervous, claps her hands while eating b/c she doesn’t like to eat, coughs while learning from sports coaches, etc.), physical impulsivity, and moodiness. I can’t recall a time when a sudden onset of the symptoms appeared. She has a limited appetite and is in the 2nd percentile on the growth charts (52 lbs at 9 1/2 yrs). She just doesn’t like to eat and gets overwhelmed looking at food. She has occasional bedwetting and still has infrequent poop/urine accidents. Over the past 2 years, we tried every type of ADHD medication at the lowest does and they all failed miserably (she was either too zombied or it made her very anxious). We even tried an SSRI and she had a developed scary serotonin syndrome. Due to a lack of growth, we recently scoped her for celiac and she was negative. However, we decided to go gluten-free a few months ago and she subsequently put on 4 lbs and grew 2 inches.

    This year, her doctor ran a battery of tests and said she could have PANS and/or lyme due to the following tests:

    • M. Pneumoniae IGM 1.56 (H)

    IGenex Lyme Test

    • IGeneX IFA, B Burgdorferi G/M/A >80 (Positive)
    • IGeneX IGM 31kDA +, 39 kDa IND, 41 kDa IND
    • IGeneX IGG 41 kDa IND

    - Nagalese Marker 1.20. The normal range is 0.32-0.95.

    She has never been sick (other than a 5-day fever in 1st grade). I can’t recall her ever having a tick bite. She currently takes a bunch of vitamins: magnesium, C, D3, zinc, omega 3, Vayarin, and a probiotic. All vitamins are to address ADHD needs. Although could I have had the wrong diagnosis this whole time?

    What do you think of her test results? Do you have any recommendations for additional tests or next steps?

    Thanks in advance for any help!

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