Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything 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. MomwithOCDson.... HA!! I needed a laugh. If you figure out what it means to be 15, I would love the answer. It's like having an alien living in the house
  3. Occasionally our LLMD (integrative doc) tests my son's testosterone. He is 15 and according to what I found on-line the upper limit for a boy his age is 763. His level was 1199. What does this mean? FWIW, he did show some aggression/anger last week. Nothing huge, just was a bit out of the ordinary.
  4. 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.
  5. I would have his IGG levels (subclasses 1-4 and total IGG) tested. If they are low, this suggests an immune deficiency. The fact that he has been sick often suggests a primary immune deficiency. Many children with PANS/PANDAS also have an immune deficiency. check out this website: www.primaryimmune.org
  6. I am not kidding you when I tell you that I was just thinking about your son and wondering when the surgery was scheduled. Then I turned on my computer and saw your post. Guess I was getting a psychic-friends-network message Praying that all goes smoothly and your son will have a quick recovery.
  7. 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
  8. 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 permiss
  9. 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
  10. 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
  11. 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 Ri
  12. 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 a
  13. Help! I must be really stupid... How do you clear your inbox? I deleted many conversations, but I'm still getting the message that it's full.
  14. 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 h
  15. I was hoping to PM you a question.
  16. 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
  17. 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.
  18. 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?
  19. From what I've read on this forum over the years and from what I've learned from a few of the popular PANDAS docs, many children with PANDAS/PANS also have a P.I. My son has Common Variable Immune Deficiency (CVID) and he gets IVIG for this diagnosis; however, the IVIG also hopefully treating his PANDAS/PANS symptoms.
  20. 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 ene
  21. 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
  22. 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
  • Create New...