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mdmom

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Posts posted by mdmom

  1. The high Mycoplasma IGG could indicate an active (probably chronic) infection. An IGM response is an early antibody response. Eventually the immune system stops making IGM antibodies to infection and the IGG antibodies take over. Once the infection is cleared, the IGG level should come down.

     

    Our LLMD interprets high IGG levels as chronic infections that need treatment.

     

    Mycoplasma is very hard to irradicate. Look at the recent posts on Mycoplasma.

  2. Everyone in my family takes 4 pills (500000 units) once daily. When we first started taking it we took it at bedtime, as our doc said it could cause GI upset and her logic is that it's better to sleep through the discomfort.

     

    We have been taking it for a long time now and we tolerate it enough to take all four pills in the morning following breakfast.

     

    Yeast die-off can be yucky and involve all sorts of symptoms. You could try backing off the dose and perhaps just give one pill a day and work up to 2.

  3. I took my DS15 to Rothman last December for OCD. We had gotten through enough medical treatment for PANDAS/PANS that he was available for help and willing to help himself. But just 6 months prior to that, I believe he would not have even been able to get in the car to drive there.

     

    Yes, your child will need motivation. The hard work ultimately falls on the child and you as a parent must hold your child accountable and encourage him/her to do the homework.

     

    But the rewards are great. My son's personality blossomed after he got through the 3-week program. We had no idea how much brain power and energy his OCD was sucking up.

     

    The docs at Rothman will be very firm and honest with you and your child. If they believe the child is not doing the work, they will suggest that you go home.

     

    But we found such value in the program (it is by far one of the best interventions we have done) that we will be returning in August to deal with non-OCD anxieties (vomiting and needles).

     

    We rented a home when we were there in December. But this time we will stay at the RMH West. I spoke with the woman who coordinates the RMH schedule and she recommended the West house b/c it is quiet and many families that stay there have children receiving bone marrow transplants. The quiet sounds good to me, as my son has Asperger's and does not like interacting with people he doesn't know nor does he like a lot of busy-ness.

  4. This came to my inbox from Beth Maloney, author of Saving Sammy and advocate for PANDAS families. I am posting it here with her permission:

     

    Hello there,

     

    It rained here for most of Memorial Day Weekend. Just as I cozily sat down to write a warm & fuzzy email about Sammy's graduation including a big thank you for all the cards (still coming in), the phone rang. It was Marianne Fox calling, the mother of Grant Acord. He had just been arrested in connection with the high school bombing plot in Oregon.

     

    Marianne and I had been in touch since the fall of 2011, and she gave me permission to share this information. Marianne contacted me in 2011 because a few months earlier Grant had been diagnosed with PANDAS by Providence Medical Center in Portland OR. He had extreme OCD, anxiety, and depression, and she'd been unable to find a physician who knew what to do. His strep titer was 950. I gave her as much direction as possible, and she began her search. She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster.

     

    I've done a couple of interviews since then. Everything one says doesn't end up in an interview, and the interviewee has no control over the edits. But I want you to know that they've all asked, "were you surprised." My answer was always, "no, but not specifically about Grant." I remember watching the Newtown coverage and wondering whether the shooter might have had a brain infection, and I knew it was unlikely that anyone had bothered to check. I've wondered because I know your stories. I’ve read about your children who've become violent, punched holes in walls, attempted suicide, pulled knives on family members, and jumped from moving cars. I carry those thousands of stories with me everyday, and it was inevitable that one day I'd get the call. PANDAS isn't an excuse for Grant's behavior; it's a factor in his behavior. It's why when the push to pay attention to mental health came after Newtown that I reached out for the Obamas and the Bidens.

     

    Shying away from how serious PANDAS can become is, I believe, is a mistake. I know some parents disagree with me. They are distraught that PANDAS has been linked to the possibility of such a horrible event. I have the opposite opinion. Perhaps THIS is what it takes to get elements of medical community off their high horse of hubris and to begin acting like grown-ups. I am sick to death of the ridiculous and illogical position taken by so many who are uneducated in the field and yet make pronouncements as if they are experts. I am tired of reading that PANDAS is "rare," "uncommon," and "controversial." When I read a doctor say, “I’ve never seen a case,” I think “because you’ve never looked for one.” And when I read that there's "no science" to back it up, I wonder how they could have missed the hundreds of evidence based studies. I’m disgusted by the way parents are treated by hospitals who accuse them of “doctor shopping,” “Munchausens by Proxy,” and try to steal their kids. Thomas Insel MD, the director of the NIMH, expressed my frustration more gently in his blog of March 26, 2012. He traced the history of neuro-syphilis back to 1912 and wrote, "The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept." Dr. Insel is in a position that demands he be politic in his comments; I am not. I bluntly believe the attempts to cause children with PANDAS to go untreated constitute medical child abuse.

     

    I know you are not all facebookers, but I truly think you should take a look at my fan pages especially when PANDAS is associated with a national event. I don’t always have time to keep you up to date. The pages are always full of all the recent interviews, articles, and opinions. You do not need to join facebook to do this - just go to the LINKS page on savingsammy.net and click. For an excellent recent article about PANDAS please see The Walrus, a highly respected magazine in Canada. Here is the link...be certain to read the postscript. http://thewalrus.ca/a-feverish-debate/

     

    On a lighter note, as promised, here is a photo of the world's most famous PANDAS success story...What does a young man do when he is twenty-three years old, has already helped to change medicine and impacted countless lives? When he has thousands grateful for his very existence, and has graduated from the computer science school at Carnegie Mellon University? He launches a start up! Keep you fingers crossed for Sammy's success. He so deserves it.

  5. I just gave a huge bag of unused meds/supplements to our "take it back" program in my county.

     

    They handed out this information:

     

    DO NOT FLUSH UNUSED MEDICATIONS AND DO NOT POUR THEM DOWN A SINK OR DRAIN

     

    TO ENSURE YOU PROTECT CHILDREN AND PETS:

    1) Pour medication into a sealable plastic bag. If medication is a solid, crush it or add water to dissolve.

    2) Add kitty litter, sawdust, or coffee grounds to the plastic bag.

    3) Seal the plastic bag and dispose in the trash.

     

    For more information:

    www.smarxtdisposal.net

     

    I think it's especially important to dispose of meds like sedatives, anti-anxiety meds (e.g. Xanax), pain meds, as these are often abused substances.

  6. My son is also 15 and we originally consulted with 4 PANDAS-only docs. While 2 of the docs were willing to treat strep and try steroid bursts, neither looked deeper for other infections.

     

    We finally ended up at a Lyme-literate doc that clinically diagnosed my son with Babesia, Bartonella, Lyme. She also serologically found Mycoplasma (high IGG that other docs brushed off), Epstein Barr, Parvo.

     

    We treated infections one-by-one for 2 years and then my son started HD-IVIG monthly this past January. My son made huge progress as we aggressively knocked down infections, addressed detoxing issues, cleaned up diet (we are gluten/dairy free), and supported his immune system with medications and supplements. It requires a lot of patience and he still has a long way to go.

     

    He now tests positive for Babesia (WA-1) and I suspect as his immune system continues to regulate with IVIG, he will mount antibody responses to other infections over time.

     

    My point is this: many children with PANDAS/PANS have suppressed immune systems that are often suppressed by infections (like Bartonella and Babesia, both of which mess with immune function). Just because your son doesn't test clearly positive for some infections (and most typical tests for infections through Quest or LabCorp are antibody-based tests), doesn't mean the infections aren't there.

     

    I highly suggest you find an LLMD to look deeper for infections. My son was seen by Dr. T and we occasionally still consult with him; however, he is not a Lyme-literate doc. Many folks on this forum consult with a PANDAS/PANS doc + an LLMD for treatment. We just happened to find one-stop shopping in our Lyme doc.

     

    Is it costly, time-consuming, sleep-depriving, stressful, scary, confusing, etc. to dig deeper and make the commitment to find and knock-down infections one-by-one? Absolutely. But the life-long gains of getting to the root of the problem are immeasurable.

     

    I also remind myself and my son that he didn't get sick overnight nor will he get well overnight. He had the misfortune of being diagnosed very late at age 13 when 5 docs agreed he probably originally developed PANDAS/PANS at age 4.

     

    Hang in there and keep digging. You will find answers.

  7. My DD13 has Bartonella and has been taking IV Rifampin 600mg Mondays - Fridays for the last 7 weeks. She also takes IV Avelox 3x/wk (it's like oral Cipro, Levaquin).

     

    She has tolerated Rifampin very well. However, 1.5 yrs ago we tried to introduce oral Rifampin and she only lasted 2 days. She seemed to have a very bad herx reaction (severe headaches, fatigue, stomach pain), so we pulled it. Then we went back to knocking down additional infections.

     

    So now that her other infections (intestinal parasits, babesia, strep) seem to be better managed (but not gone), she is tolerating the Rifampin better. In fact, it has really moved her forward with her treatment and seems to be her current miracle drug.

     

    We've been treating for 2 years, and treating with IV meds for 14 months.

  8. tpotter....

    So sorry you are dealing with this. Our LLMD told us that Dr. B in NC is a vet who has done the most research on Bartonella of any other doc. He was inspired to do the most research on all the strains of Bartonella that affect humans (I believe there are 9) because his own father who lived on Maryland's Eastern Shore died of Bartonella complications (he was elderly).

     

    I personally emailed Dr. B about my daughter and gave him some background on her. He highly recommended that I do the testing because she is negative on testing for the only 2 strains looked for through Quest and LabCorp. She has the classic clinical picture for Bart - the "stretch marks", body swelling, anger (among other things) but is negative every time we test. We still treat based on clincial symptoms and she is currently on IV Rifampin/IV Avelox protocol.

     

    I have chosen not to test simply b/c of the expense. But I can read in your words that you really want to be able to show positive test results to your docs if possible.

     

    Here's a blurb from Dr. B's research paper on Bart:

    Endocarditis can be induced by a spectrum of Bartonella species in dogs and human patients and is the best example of documented disease causation for this genus. Historically, Bartonella 3 species have been a cause of culture-negative endocarditis in people and dogs because the diagnostic methods used by microbiology laboratories were not adequate to isolate these bacteria. Now, by using specialized techniques, a spectrum of Bartonella species have been identified in research and diagnostic laboratories in different parts of the world—in heart valves or in blood cultures from dogs and people with endocarditis.

     

    3 It is important for physicians and veterinarians to recognize that some of these Bartonella species are found in the blood of cats, dogs, rats, ground squirrels, and rabbits.

     

    I encourage you to email Dr. B directly. I will PM you the email address I used.

     

    Hang in there.

  9. Many of you probably have had similar experiences....

     

    I have taken my son to many, many medical professionals. By the time we got to our current treating doc, I started counting the number of medical folks we had seen. She was #25. She has helped us the most.

     

    Why is she the best so far? Because she takes a lot of time with us, listens, is respectful and even empathizes on a personal level.

     

    I have fired doctors after one visit. I now believe that you can tell in only one visit whether or not a doc is a good fit.

     

    I am currently reading the book Blink by Malcom Gladwell and he states the same on page 43:

     

    "Next time you meet a doctor, and you sit down in his office and he starts to talk, if you have the sense that he isn't listening to you, that he's talking down to you, and that he isn't treating you with respect, listen to that feeling. You have thin-sliced him and found him wanting."

     

    Thin-slicing refers to the concept that you can form a pretty accurate opinion of a situation or person in just short clip of interaction or time.

     

    When finding help for your child, listen to your gut feelings about a doc. I wish I had done this so long ago. Perhaps the doc that now helps the most wouldn't have been #25 on my list.

  10. I agree with being conservative with IVIG. We have been treating infections and underlying detox and gut issues for 2.5 years now (and quite aggressively with IV meds for the last 16 months) and my 15 yr old son has made slow, steady progress. We added HD-IVIG treatments in Jan. and he continues to make slow, steady progress. It's not a magic bullet.

     

    I would urge you to find a doc that is willing to do thorough testing and look at clinical symptoms for infections (including Lyme, co-infections, etc) before you spend a lot of money on IVIG.

     

    IVIG will not have long-lasting effects if there are underlying infections.

  11. Thought I'd mention that if your child does get diagnosed with a PI and you are considering treating PANDAS with IVIG, you will have a good chance of getting the IVIG covered with the PI diagnosis. I do not believe any insurance companies are currently covering IVIG for PANDAS.

     

    But a warning....

     

    The IVIG dose for PI is much lower than for PANDAS. Many on this forum have reported a lower dose of IVIG made their child's PANDAS symptoms worse.

  12. I was thinking someting Lyme-ish like Bartonella, which can affect the heart. The long-term effects of Lyme and co-infections can cause permanent damage, according to what I have read and been told from our LLMD. It's one of the reasons I choose to keep treating my children for Lyme, Babesia, Bartonella and Mycoplasma still (we've been at this 2 years).

     

    Can you ask your LLMD his opinion?

  13. Every symptom you are describing sounds like a thyroid problem. My hypothyroidism was uncovered 3 years ago and I had no idea it was going on.

     

    Our LLMD, who is an integrative doc, treats my thyroid disease very aggressively. She follows the newest guidelines for TSH levels, but most docs are still not following them.

     

    She treats if the TSH level is out of this range: 0.25 - 2.5.

     

    I personally feel best (and she says a lot of her Lyme patients report the same) when my TSH is almost 0. Yes, this sounds wacky.

     

    Once I was treated with Armour Thyroid, I dropped 20 lbs, had more energy, was not depressed, stopped losing hair and my skin quality improved.

     

     

  14. We rented a home for 3 weeks on St. Pete Beach for a very reasonable price. The drive to Rothman was only 15 minutes. It was worth every penny b/c you will only be at Rothman 1 hour a day and being within walking distance to the beach was relaxing for my son and made his Rothman homework less stressful.

     

    We used VRBO.com

     

     

  15. Have you considered that you may have infections as well that may be causing your symptoms?

     

    One of the best things my DH and I did was to be evaluated and tested by our children's LLMD/PANS doc. She found Mycoplasma, Lyme, high EBV, Brucella, and clinically treated us for Babesia and Bartonella since we had symptoms and our children tested positive.

     

    Prior to treating (and we are still treating after 2 yrs), my DH was angry and at times very sad about our son's psychiatric state and I was treated for anxiety and depression before we treated for infections. Doc also uncovered thyroid disease in me and treated aggressively.

     

    Is it a financial burden to be treating the entire family? Absolutely. But worth every penny b/c my DH and I are able to stay emotionally strong and see things clearly since our own psychiatric symptoms are gone.

     

    Also, when you said your child isn't fully healing and you feel like your "issues" are holding her back - have you considered the fact that you may be sharing infections? Our LLMD/PANS doc said that many docs that really understand these weird infections that our kids deal with are finding that no one in the house gets well until everyone in the house is treated. Perhaps someone is a carrier in your house?

     

    Hope this helps. Hang in there and be good to yourself. We all get it here on this forum.

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