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HopeinHIM

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  1. Like
    HopeinHIM reacted to Mayzoo in Pans/Bart child always tired and weak!   
    My kiddos Coxsackie A titers went from 1:160 (IGM) to negative in five months on our herbal antiviral program. We are using Steven Buhner's EBV protocol. Her HHV-6 also dropped from 10.71 to 4.54 in the same five months. Her energy level and overall behaviours have improved drastically.
  2. Like
    HopeinHIM reacted to sf_mom in Pans/Bart child always tired and weak!   
    I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't
    B-12 and zinc/copper ratios Iron levels B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc).
     
    Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers.
     
    http://www.spectracell.com/patients/patient-micronutrient-testing/
     
    Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold.
     
    AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.
  3. Like
    HopeinHIM reacted to momslove in PANS/LYMES knowlegable therapist for child in NJ   
    My experience/perspective--for what it's worth...
     
    My DD has OCD secondary to PANS. We need doctors and therapists. We are working with doctors who seem to know what they are doing. We have had difficulty finding therapists who are knowledgable and skilled with cognitive behavior therapy, particularly ERP, which is the research or evidence based approach to dealing with OCD. We ended up going to the Mayo Clinic in Rochester, MN for an intensive week of CBT/ERP. They were kind, compassionate, and highly skilled at this. When I inquired about the therapy, I was very clear about DD's medical diagnosis AND about our reasons for seeking their services--for the therapy, not medical advise. We had to go first for a psych eval and of course, there was some discussion, but we moved on. Mayo does not "support a diagnosis of PANDAS, but will treat the symptoms" according to staff in the neurology department, BUT they are awesome in providing treatment for OCD in another department.
     
    Be clear about what you want from a therapist and ask for that. In our case, we wanted CBT/ERP. It did not matter what they thought about PANDAS/PANS or any other possible cause of the OCD. If you want something else, that's ok, just be clear about it.
     
    My weakly formed analogy is a sports analogy. The opponents include strep, myco. pneum., coxsackie, OCD, lyme, bartonella, inflammation, etc. My DD's team includes herself, myself, and DH. I also serve as general manager, selecting coaches for offense, defense, and special teams. Each coach needs to do his/her job and not worry much about what the other coaches are doing.
  4. Like
    HopeinHIM reacted to tj21 in Amy Joy NP from HillPark medical center in Cali? Anybody try her?   
    She has been treating ds15 since March 2014 with slow-going but good results, and with even better results over the past 4 weeks. In fact, things were previously so bad here that we'd already had one psych.hospitalization and 2 yrs. residential placement in Utah, so this in comparison gives us hope.
     
    I'm working with her as well, since we discovered Babesia (and I had a very bad EBV infection 10 yrs. ago, probably now w/recurrent flaring).
     
    As an integrative NP, she is looking at overall immunity, allergies, autoimmune issues, de-toxing, possible Lyme in ds15, inflammation control. Lots of bloodwork (vials and vials!), and so many abx plus supplements that the weekly fill takes an hour, and we have to ingest most in two batches; fortunately ds15 is a pro at med-taking.
     
    I find the office the be disorganized which drives me nuts, but that is a separate issue.
     
    Happy to private message if you have more specific questions.
    Tracy
  5. Like
    HopeinHIM got a reaction from cynditk in Still learning how to seek/sort care for my child...   
    Oh my,
    there is so much that I (we) have learned this past year. Our DS 10 was diagnosed with PANS and then Lymes. Treatment has been up and down and mostly down these past few months.
    I have learned that you can NOT actually run out of tears while watching you child struggling to maintain sanity each day. NO...Each day there is a whole new fresh batch of tears produced.
    I have learned that the power of a mother's love will take you to the end of the universe if need be until your child has some peace and normality.
    I have learned that that this illness can absorb every part of your being if you are not careful.
    I have learned that I MUST force myself to focus upon other family members despite me not wanting to do anything but research PANS and minister to my sick and needy child.
    I have learned that most people don't understand and that when mental illness is mixed into the equation, people will run away faster than a roadrunner. It is as if your child has leopercy.
    I now have more compassion for others who are ill and remember to send frequent notes of encouragment .
    I have learned that sometimes, with much prayer , that I am a mighty worrier for my boy but at the same time in the same day I can also fall apart and lose all hope.
    This is a journey that nobody would dream of or wish on their worst enemy. None of us asked for it and yet most of us embrace and face the challenge. I have most importantly learned that all that I do and all that the doctors do.... ultimatley, our children's future rests in the arms of God.
  6. Like
    HopeinHIM got a reaction from momslove in Still learning how to seek/sort care for my child...   
    Oh my,
    there is so much that I (we) have learned this past year. Our DS 10 was diagnosed with PANS and then Lymes. Treatment has been up and down and mostly down these past few months.
    I have learned that you can NOT actually run out of tears while watching you child struggling to maintain sanity each day. NO...Each day there is a whole new fresh batch of tears produced.
    I have learned that the power of a mother's love will take you to the end of the universe if need be until your child has some peace and normality.
    I have learned that that this illness can absorb every part of your being if you are not careful.
    I have learned that I MUST force myself to focus upon other family members despite me not wanting to do anything but research PANS and minister to my sick and needy child.
    I have learned that most people don't understand and that when mental illness is mixed into the equation, people will run away faster than a roadrunner. It is as if your child has leopercy.
    I now have more compassion for others who are ill and remember to send frequent notes of encouragment .
    I have learned that sometimes, with much prayer , that I am a mighty worrier for my boy but at the same time in the same day I can also fall apart and lose all hope.
    This is a journey that nobody would dream of or wish on their worst enemy. None of us asked for it and yet most of us embrace and face the challenge. I have most importantly learned that all that I do and all that the doctors do.... ultimatley, our children's future rests in the arms of God.
  7. Like
    HopeinHIM reacted to rowingmom in Daughter's Update: Buhner's bartonella/babesia protocols   
    DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse.

    We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took full responsibility for studying. She worked for at least 3 hours. Neat and tidy writing, organized work area. At dinner time she admitted that she was having trouble with one question, but that she felt after dinner when she had had a break that she would figure it out - and she did. No screaming or crying. No throwing things or raging. Absolutely no frustration; just confidence. It was truly amazing!

    This was a child that 3 years ago (Grade 5) I had to physically dress, brush teeth, tie shoes, pack backpack, pick up homework from school and work through unfinished school work/homework one on one because of ADD. She had an IEP and the help of the classroom EA. She sat behind a screen and wore ear plugs to decrease distraction. She was removed from the classroom for testing and had an EA sit with her to redirect her attention. She had an EA or another student go to the bathroom with her because she would become distracted and forget to go back to class. She had to eat lunch in the special needs classroom so the teacher there could redirect her to eating; otherwise her lunch would return uneaten.

    Her printing was huge and messy and her books covered with doodled pictures (the same one over and over - her OCD). She raged, she screamed, she hit, she was socially withdrawn and regressed. She was so fatigued, dizzy and in so much pain that she had to sit out of gym class, or sit on the curb watching the neighbourhood children play. She had Tourette's so badly at times that she couldn't read because of head snapping/bobbing/eye rolling, and often couldn't give presentations in class because her vocals were so bad. A couple of times her Grade 6 teacher would recount this to me and cry, she felt so sorry for our daughter.

    Her improvement has been nothing short of a miracle.

    We are maintaining low doses of Buhner's bartonella protocol (minus l-arginine), I am still messing about with the babesia herbs. Both DD and I are reacting very strongly to bidens (1 drop 3x daily) (which Buhner says is not supposed to be as potent as cryptolepis), with brain herxes (dizziness, brain fog), but with the help of Julie McIntyre we are still seeing improvement.

    One thing that I found to be a surprise was Julie's recommendation of cilantro/zeolite for detox. I put off using cilantro for about 8 months. One because I thought it was baloney (you'd think I'd know better by now), and two because I couldn't find an organic source. Well I found an organic tincture source, and as soon as I started using it (1 drop 3x daily) our daughter's remaining symptoms declined noticeably (that is, even my husband noticed).

    I messed about and ended up being too enthusiastic (10 drops 3x daily) which resulted in a yeast infection (googling revealed that the gut may overgrow yeast to protect the body from too many metals being dumped into the intestine at once). Instead of using zeolite we are using Diatomaceous Earth; we may switch to zeolite (which Julie swears by, and she hasn't led us astray yet - except for dosages which are very tricky for us (we find 1/4 of recommended dosage to be best).

    The amazing thing is that during a recent trip which entailed a week's stay in a "free wireless" hotel (meaning wireless is EVERYWHERE) both our daughter and I were unaffected by the EMF's. We are usually quite electrosensitive. Previous trips to wireless available buildings (museums, hotels, restaurants, malls etc.) generally resulted in an increase in symptoms for our daughter (especially ticcing, fatigue and headache to the point of having to sit down and rest) and palpitations/anxiety for me. I was not looking forward to staying in the hotel, and neither was our daughter, but after our first night there we realized that we weren't being impacted to the extent that we had been. We actually slept like logs!

    Cilantro and clays are used in many natural metal detox remedies; and it would make sense that removing metal burden from the body would decrease reaction to electromagnetic frequencies.

    No child should have to suffer the pain, fatigue and cognitive dysfunction that DD has had to endure, but I have learned so much from this journey:

    That mainstream medicine may not be the be-all, end-all.

    That bacteria are not the only problem, that compromised immune/detoxification systems are responsible for symptoms as well.

    That our children are being poisoned by the pesticides in their food (big agriculture) and by the metals/adjuvants in the 70 (!) vaccines now recommended by experts (mainstream medicine / big pharmaceutical companies).

    No large corporations/conglomerations are ever again going to tell me what is best for me or my family.

    Although in the past I would have considered myself nuts to even suggest this to anyone else (let alone believe it myself), I now read several alternative health sites:

    http://www.thehealthyhomeeconomist.com/

    http://www.mercola.com/

    http://www.greenmedinfo.com/gmi-blogs

    http://www.chrisbeatcancer.com/

    http://www.i-sis.org.uk/index.php

    http://www.ageofautism.com/

    http://www.momsacrossamerica.com/blog

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