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JuliaFaith

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  1. Like
    JuliaFaith reacted to 3bmom in Antivirals   
    We are on Valacyclovir 1 gram 3x/ day for the last 2years. Started off slowly so he could handle die off. Made a huge difference in 36 hours for us. Would of kept him out of hospital if they would of done blood work. His titers were for herpes simplex 6, 15x higher than normal. At zero now and Dr is thinking about taking him off which scares me since we have had such great success. His Dr. Also tested for Herpes 1 and 2. Just had him tested for cosakie and it was negative. Dr. has seen that whenyou treat the other issues, and allergy and GMO free diet you can kick out other viruses.
     
    On a side note my other son at 2 was put on valcyclovir for 5 years after getting multiple cold sores every week. He has dyslexia, Irlen, and dysgraphia. Lost dysgraphia with acutane for horrific acne. Wonder if he would of had Autism if left untreated knowing what I know now.
     
    Didn't see any side effects with either boys.
     
    Also used for father when we saw signs of Alzheimer's and he tested positive. Great results!
  2. Like
    JuliaFaith reacted to GraceUnderPressure in A message of thanks to all of you....   
    I so totally second what you're saying - thank you for saying it better than I ever could! The wonderful people who take the time to post their questions, research, experiences and answers truly have saved our lives from the dark hole we were in 3 years ago. We are still struggling and still have a long way to go, but just the fact that we are crawling forward instead of spiraling down - the fact that we have hope where we were once sinking into the pit of despair - is HUGE! My most heartfelt thanks to you all as well! I pray for God to bless all the folks on this board and that He will grant us a cure for these awful infections and the autoimmunity they cause!
  3. Like
    JuliaFaith reacted to qannie47 in A message of thanks to all of you....   
    Once again, I found myself coming back to this forum. And it has occurred to me what all of you in this forum have come to mean to me. I have never met any of you. Yet, I know all of you. This strange connection/kinship, lending support...encouragement. I am struck with the realization of how thankful I am that on many days, most days, I have all of you to come to. I read your stories, contemplate your questions, find answers, and realize that I am not alone. That is such a blessing. All of you are so remarkable. Your strength, determination, faith. Your fortitude. The lengths to which all of you are willing to go to for your children, to not give up, to keep seeking when a dead end is encountered, is so inspiring. Truly, emotional nutrition when my day has not ended well. Then there are those of you whom are suffering personally. You have not given up. I am so thankful to you as well for the courage you have to share your journey. I confess that sometimes, I look around me and see ordinary people dealing with ordinary circumstances, and while I am not judgmental, or resentful, I find myself sighing....and think to myself....you have no idea. It with all of you, that I have found this odd cyberspace family connection that I am so grateful for. So I thought it was so important to acknowledge this. I have a feeling that my own feelings are not foreign to any of you. I sense that. Last, but not least, I end this rather emotional expression, by saying once again, Thank you to all of you. You all are quite extraordinary. Q
  4. Like
    JuliaFaith reacted to rowingmom in Buhner Protocol for Bart   
    We are using the Buhner bartonella protocol now, and are slowly adding back A-Bart per the LLMD. DD was taking Japanese knotweed the whole time she was on abx, but probably at too low of a dose (1 cap SourceNaturals BID). She is now taking 3/4 tsp decoction throughout the day and 1/4 tsp tincture TID. I suspect that dosage of knotweed may have helped with herx produced inflammation, but I didn't see the real difference it could make in brain inflammation until I increased the dosages.
     
    After 2 years of multiple combo abx she weaned off in April - 5 months now, and is doing really well. We are having blips ramping A-Bart but they have resolved in 3-4 days (some headache, shin pain, emotional lability, but executive function and ticcing are fine).
     
    She had a herx reaction with panic attacks when I tried to increase her dosage of houttuynia to 1.5 tsp decoction taken throughout the day. After talking to Buhner's associate, she said a lower dose (3/4 tsp) was fine for a 75 lb child, but that we would have to stick with it for a year or so.
     
    DD is taking 1/4 tsp sida actua tincture TID and 5 drops teasel tincture TID.
     
    We are using low dose astragalus (500mg QD, Mon, Wed, Fri) and ColdFx (extract of American ginseng) (2 caps Tues, Thurs) to boost the immune system - these infections can't be overcome without some immune function. Buhner's associate suggested cordyceps instead of astragalus, which is less stimulating on the Th1 pathway. This gave DD a huge boost of energy, too much really as she is no longer dealing with fatigue. Because of this I haven't given it to her again, but should perhaps try at some point as Buhner thinks it is important. However the dosages he suggests (1 tbsp TID) are a lot larger than what I had used (1/2 tsp BID). Not sure what the reaction to that would be.
     
    I use the protocol myself and had the same initial jolt with cordyceps, but this reaction seems to have leveled out as I keep taking it (1 tsp BID, morning, afternoon). I also herxed with 1/5 tsp houttuynia, but my reaction was more body/muscle/joint inflammation which resolved by decreasing the dosage. I seem to tolerate the same dosages of the herbs as DD. Not sure what that means as I weigh twice what she does.
     
    We continue with some of the other supplements we had been using during abx treatment. Liposomal glutathione and methyl B12 QD, NAC and l-glutamine QD 3x weekly, methylfolate and P-5-P QD 3x weekly, TransferFactor QD, phosphatidylcholine QD, curcumin QD, CoQ10 QD, probiotics or fermented vegetables daily.
     
    After all that, DD continues to improve after discontinuing abx in April. Whether or not this can be attributed to our present protocol, I am not sure. Would she be at this place if we hadn't used abx, initiated methylation and immune boosting protocols, and could we have gotten here with Buhner alone? IDK. I notice the difference Buhner has made in my brain fog, foot and muscle pain, but I have not been tested for bartonella/lyme, so don't have a positive diagnosis.
     
    If you don't have the book and are thinking of using the protocol get his mycoplasma/bartonella coinfections book. It is very informative.
  5. Like
    JuliaFaith reacted to rowingmom in Have you heard of B.hominis parasite?   
    Aren't we all ! If it works, bring it on!
  6. Like
    JuliaFaith reacted to queenmother in Have you heard of B.hominis parasite?   
    blastocystis hominis was one of the critters that showed up on DD's stool test about 3 years ago. After treating other parasites - and h. pylori - it has not shown up again. I assume something in the pharmaceuticals, herbals, minerals, and ritualistic cleansing ceremony must have killed it. Just kidding about the ceremony, sort of. We were pretty desperate at the time.
    QueenMother
  7. Like
    JuliaFaith reacted to SSS in Have you heard of B.hominis parasite?   
    I just wiki'd it, sounds awful, and something a regular Dr. would never think of- but, sounds like a strong prescription antifungal takes care of it...
  8. Like
    JuliaFaith reacted to philamom in Overview of Viral Infections   
    ditto
  9. Like
    JuliaFaith reacted to peglem in Overview of Viral Infections   
    Cool! Thanks.
  10. Like
    JuliaFaith reacted to Chemar in Understanding science- good article   
    I do agree with Michael......... plus, as someone with a background in medical/scientific research... I am also aware of the very real aspect of "skewed" research, "peer reviewed" included...where researchers make the data fit the hypothesis whether for prestige, payoff or tenure.
     
    I learned early on to be very cautious in just accepting something blindly because it was a "scientific" study. Especially when Big Pharma and others with a vested interest are at the helm.
     
    Obviously, there is a lot of invaluable info that comes from genuine, unbiased research, and thankfully there is a lot of that. But sad to say, not every "scientific" study falls into that category.
  11. Like
    JuliaFaith reacted to MichaelTampa in Understanding science- good article   
    Feels like it forgot to mention the influence the pharmaceutical industry has on the selection of articles, that where they get their money can influence what they publish.
  12. Like
    JuliaFaith reacted to MichaelTampa in Aluminum   
    Here is a link to a youtube on this topic. It is tediously long, but you don't have to watch the whole thing to get the idea.
     

  13. Like
    JuliaFaith reacted to rowingmom in Aluminum   
    Frustrating how we have to all figure this out for ourselves because the mainstream doesn't ascribe to the concepts. So great to have a forum with so many parents who think for themselves and are coming up with conclusions that are helping our children! Sometimes it's hard to think so much.
  14. Like
    JuliaFaith reacted to JAG10 in Gotta share   
    I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud.....
     
    My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce!
     
    I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!!
     
    I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!
  15. Like
    JuliaFaith reacted to tpotter in Not over: part 2   
    My DS's strep levels were high, and stayed that way for about 9 years, and lots of tx, including PEX and IVIG. We were all tested, and the dog was also treated. Looks like the levels just came down this year...only thing we did differently was ART. Just wanted to mention that.
  16. Like
    JuliaFaith reacted to Pandasphilly in Great article on Parasites   
    Great article! Sums up treatment. Thanks for sharing
  17. Like
    JuliaFaith reacted to rowingmom in Great article on Parasites   
    Thanks for the info. I have been contemplating diatomaceous earth for a while.
  18. Like
    JuliaFaith reacted to LNN in I have a direction to go now. Can you read this for me?   
    Peglem is right. Elevated CamK does not mean Pandas. It does mean high cytokines and possible autoimmune response (i.e. PANS). Lyme can elevate CamK - even Dr Cunningham has said this.
     
    Since you have positive lyme and Bart results, I'd see Dr M, who's 30 min north of Dr J. He's an excellent LLMD and does test/treat parasites, viral infections, PANS, lyme & co, metals, stool testing, guidance on probiotics, good knowledge of detox and balancing herbs and abx, some methylation. He has a very long waiting list. Call for an appt and ask to be put on the waiting list. He gives priority to kids. I'll PM you his contact info.
  19. Like
    JuliaFaith reacted to trintiybella in Okay, some good news at last. Motrin helping but why?   
    Rowingmom...regarding: the "bacteria being parasitic"
    Could that be why my child started to sleep a little when I added black walnut oil in for parasites?
  20. Like
    JuliaFaith got a reaction from tpotter in This is what is happening.   
    We go to a dr. in Dr. Kl's office so I can only speak to what I know. They are called 'Sophia Health Institute' if you want to look them up. We have been going to their office for 2+ yrs. They will only take you as a patient if you are mostly eating just organic food and are open to all types of medicine (allopathic/natureopathic/homeopathic). They use every medicine/treatment that is available and treat aggressively. He does go to Europe every other month, so some of their treatment is unique, but has been used there with success for some time.
     
    He does seem to specialize in chronic illnesses and autism. He started and heads up a neurological clinic in Europe somewhere too. The ART muscle testing he uses and teaches is amazingly accurate (at least with our Dr.). It seemed strange at first but they can tell a lot of what is going on the first visit. Every organ is ART tested for stress along with thyroid/adrenal etc. every visit (along with lyme, co-infections, parasites, worms, bacteria, viruses etc.)
     
    We started treatment with de-worming/anti-parasite meds. and h Pylori testing along with hair testing for heavy metals and vitamin absorbtion. Every supplement/meds that you take (and there are many and expensive) is tested against the patient to see if that is what the patient wants/needs. Detoxing starts from Day 1. You will leave the office with an entire sheet of suggestions (this gets smaller as you get healthier.
     
    Almost our whole family goes to this office now because there is no guessing, only what your body needs at the time.
     
    Have heard that the first visit is usually with 3 drs. so it is quite expensive and lasts at least 1+ hour. Do not know how much. The other drs. in the office apparently do not charge as much but the one we go to is excellent. They all consult and talk to each other about cases etc. once a week. Cost per visit goes down in price after first one. You have to pay the day of visit and they do not deal with insurance at all. I submit claims and get reimbursed for a portion of every visit. The supplements I deduct on tax return for medical costs.
     
    Hope this gives you an idea of what to expect with this office. PM me if you want any add'l info. Best wishes on finding someone to help with healing!
  21. Like
    JuliaFaith reacted to Mayzoo in manuka honey   
    We have a pool, and I have been using 1/2 white vinegar mixed with 1/2 rubbing alcohol in kiddos ears for years after we get out of the pool. No ear aches since starting this. It works as an anti-fungal by altering the PH to an inhospitable level for fungus.
     
    I will try this mixture next time kiddo has an ear ache though. She gets them in the winter sometimes.
  22. Like
    JuliaFaith reacted to Mayzoo in manuka honey   
    You are welcome . I live in a tiny town over 20 minutes from a small town LOL. I shop online a lot to get the variety of what I want since a truly decent town is over 45 minutes from me. It has become second nature now for me to check amazon and ebay.
     
    Hope it helps someone .
  23. Like
    JuliaFaith reacted to EAMom in Good news and bad news   
    Hi!
     
    I haven't read all the responses...but this is what gets me about these chronic Lyme naysayers that say infection doesn't persist after 30 days of antibiotics. You are the 3rd person I know of that has (or had a child) on antibiotics for 2-3 YEARS, yet off antibiotics for a couple of months, the culture comes up positive again. (There is actually a 4th person who I know personally, had just 30 days of antibiotics...Lyme culture positive). Why isn't there a study to demonstrate this, and put an end to the ridiculous argument that Lyme is cured after 30 days???
     
    ^okay vent done.
     
    I don't personally have Lyme (neither do my kids)...but this is me. If the culture was positive, I would continue to treat. I like the idea of at least doing herbals, if nothing else. My issue with Lyme is, just because we don't think there are symptoms now (and it sounds like you think there may be) that doesn't mean she's not going to become full blown again if she gets a co-infection (not thinking just tick stuff, also strep, viral, puberty, anything).
     
    And KaraM, are you also dealing with PANDAS....has strep ever been an issue? Is your dd on something to prevent that? We plan on keeping my dd on abs (for PANDAS/strep, not Lyme) until at least age 18. She's not symptom free, but pretty good, 90%. We just can't risk another strep infection (Azith also offers some protection against mycoplasma, which is nice) since her big PANDAS episode at age 7 was life threatening (anorexia) and we are still not symptom free (even after 3 HD IVIG's), although her baseline has been pretty stable for the past year.
  24. Like
    JuliaFaith reacted to smartyjones in How is ART form of muscle testing done?   
    grace -- I don't have personal experience with specifically an ART practitioner -- however, I have read and seen web lectures of Klinghardt. we do see an integrative MD who uses something kinda/sorta like ART.
     
    I would ask you what your thoughts are on acupuncture. I consider the energy "manipulation" to be of this type. if that is okay with you, you'd likely be okay with what you're thinking of pursuing; if not, perhaps not. also, i'd ask you what you are thinking to do with the information you receive -- it would likely guide a path of supplements, diet, perhaps traditional meds -- would you think to follow it to the letter, pick and choose or say no thanks -- that may also help guide your decision on going in the first place.
     
    we do not see dr o. however, I did see her speak at a recent TACA meeting and found her very interesting. she is a rather traditional doc -- however, she does have a practitioner that has some type of relationship with or refers people to - she has a link on her website and she did mention it at this lecture -- that has a very good website that has good explanations of this type of medicine that you may find helpful. you can look at the website at http://cornerstoneintegrativecare.com/
     
    good luck in your decisions.
  25. Like
    JuliaFaith reacted to Mayzoo in manuka honey   
    I do not know how much it is at your local store, but you can get almost anything on amazon now days. Here is the search for manuka honey:
     
    http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=manuka%20honey
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