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adkmom

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Posts posted by adkmom

  2. Infections more common in CA?

    in PANS / PANDAS (Lyme included)

    Posted

    Hi everyone,

     

    A relative of mine has had many Lyme or co-infect. symptoms since hiking in national parks in Southern CA and Nevada mountain range.

    Does anyone know if there are certain infections more common in CA that he should ask his doctor to test for? (He doesn't yet have a LLMD but has the Igenex test kit, so his doc can fill out the requestion but needs to know which tests to order.

     

    Thanks for any guidance.

     

    darlene

  3. backsliding

    in PANS / PANDAS (Lyme included)

    Posted · Edited by adkmom

    Laura,

     

    Sorry to hear you're having troubles again! Our cases are so similar sometimes. Dr. B suspected Colin had sinus infection several weeks ago (he was pulling at his eyes, throat clearing - now we know from post-nasal drip and his behavioral symptoms had increased). Based on those symptoms, Dr. B put him on 4 day steroid to treat (And he said he spoke with Dr. J about this and got his approval). By day 2, his symptoms had disappeared. So, Dr. B's hunch was right. He said when there's so much inflammation from a sinus infection, the antibiotics won't do anything because there's no way to drain. (I never knew this before.)

     

    Hope she starts feeling better.

     

    darlene

  6. how is Bartonella different from lyme or other co?

    in PANS / PANDAS (Lyme included)

    Posted · Edited by adkmom

    Dr. J. prescribed Bactrim for my ds4 for Bartonella. So sorry, it's taken so long for you to find an answer, of some sort. Terrible! Unfortunately, it doesn't seem that uncommon. Bartonella is hard to pick up. Probably no consolation, but at least you've got the positive test and can pursue the proper treatment! We're retesting ds4 through another lab but symptoms all point to that and he's definite positive for Lyme. Also, treated for Pandas. As the others mentioned, Dr. J said Bartonella is very hard to get rid of and it's predominant neuropsych symptoms. So when treatment has taken care of other symptoms (joint pain, ect) and the behaviorial, cognitive stuff remains, he looks for Bartonella. And our guy has LOTS of ADHD and aggression (bursts).

     

    PS - What state are you in?

  7. Are hyperactivity and age regressive behaviors symptoms

    in PANS / PANDAS (Lyme included)

    Posted · Edited by adkmom

    Kara,

     

    I'm sooo sorry. I've been there. We changed meds, knowing nothing about herxing, right before Florida/disney trip! We almost didn't make it on the plane. Colin doesn't have OCD symptoms but major ADHD and aggression bursts which made for a not so relaxing vacation! We realized it was herxing after we got back and spoke to the doc. Hope it gets better for you guys.

     

    If you are doing a Disney vaca., let me know, we were saved with the special "disability" passes we got.

     

    darlene

     

    PS - I'm with you. It totally sucks!

  10. Bartonella and getting discouraged!

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Darlene,

    Same same and same here! Bactrim added post Dr. J visit. OCD returned big time, we're 2 1/2 weeks out now...but she was on the decline before our visit, this is just about three times as bad. One thing I can say is we are doing lots of detox, and she is a pleasant relatively happy OCD kid. We are not fighting her OCD at all either though, so those battles are not happening. We do 10 bentonite clay caps after school, 10 BurBur drops morning and night, and just started Olive Leaf Extract for yeast. Also give one advil in the morning or whenever she is unbearable. Some people swear by 5HTP, but this is in her multi-vitamin. This is all just shot in the dark stuff from this forum, but her mood is great, and not too much struggling with depression, frustration, just lots of hand washing and not touching stuff, not letting us touch stuff, etc. We are going to tough it out and see what happens...SF mom says up to 12 weeks. We also see Dr. B on Tuesday, so see if he changes the zith or Augmentin. I'll let you know. Hang in there!

    Laura

     

    Thanks Laura. Do you give her meds all in the a.m.? I give Colin all 3 in the a.m. and then 1 at night. wondering if it makes any difference, breaking it up? And did Tindamax make it even worse? We start that next weekend. (I really need to prepare myself.)

  11. Are hyperactivity and age regressive behaviors symptoms

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Kara,

     

    My ds4 just started Bactrim for suspected Bartonella. He's also being treated for Lyme and Pandas with Azithro. and Cefdinir. The day after starting Bactrim he started a motor tic. That stopped within 2 days but then his symptoms of hyperactivity really shot up, along with aggression, inability to focus, impulsivity and opposition. And yes, I've been told by Dr. J that those symptoms ADHD are classic Bartonella. Colin also started behaving more child-like too but he's young, so it's hard to say if that's just a passing phase unrelated to meds. The hyperactivity definately is related...at least for us.

     

    hope that helps. has she gotten any better?

     

    darlene

  13. Bartonella and getting discouraged!

    in PANS / PANDAS (Lyme included)

    Posted

    To update...we finally took ds4 to Dr. J last week. Went well but expected all the changes that he made (based on what I've been reading on the forum!) He strongly suspects Bartonella and ordered a test through Specialty labs (which is now under Quest - FYI) so will be covered by insurance. He thinks Bartonella because his neuropsych symptoms outweigh the physical symptoms and we're dealing with aggression issues and LOTS of impulsivity.

     

    So, still on Azithro, Cefdinir but added Bactrim to target Bartonella. Start Tindamax every weekend starting next weekend. (will be an interesting Easter) He said he would hope to see some improvement in a few weeks and symtoms could initially stay same or get worse. They've gotten WORSE!!! It's scary, I almost dread giving the Bactrim because it seems to bring out this really dark, mean, angry, aggressive, oppositional side! It's terrible. He's been on it for a week now. The aggression/rage don't last long, but have bursts of it alllllll day long. And the opposition is terrible. Ran from me in a parking lot and yelled "what are you going to do about it if I don't come!" didn't even sound like my kid...

     

    Does anyone else experience this behavioral stuff when treating Bartonella? Did it last long? Anything help? It doesn't seem to be herx. Just an increase in those symptoms. His tics haven't started up.

     

    I just keep saying to myself...this is the disease...he doesn't need psych meds...It can get so tiring! Sorry I'm really VENTING.

     

    darlene

  16. What does a herx look like?

    in PANS / PANDAS (Lyme included)

    Posted

    I need to understand the difference between extreme OCD symptoms and a herx. Dd10 was slowly stalling then declining on Augmentin,Zith, weekend Tindamax through the month of March, after huge gains Dec - Feb. LLMD added Bactrim last Thursday. OCD continues to get worse, almost to the point of pre-treatment now. After all this time I still don't know what a herx looks like. All I know is sudden, raging OCD, brain fog, tears. Is this what a herx looks like to other parents? Strep titers remain in mid 200s, anti- Dnase B higher than ever at 978. Takes 220 bil probiotics and 10 bentonite clay daily. Advil 2 x daily to help mood...

     

    Hey Laura,

     

    Sorry to hear things are so rough! Hang in there. We just got back from our appt. with Dr. J and Dr. B. Jones made the changes I expected. Suspects Bartonella and ordered more tests. Started ds on Bactrim and in 2 weeks to start Tindamax on the weekends. He did mentioned that if things got bad on Tindamax, cut back from 2 days to 1 day. I wonder if that would be helpful for you? He suggested we check in after our first week of treatment. So, maybe you can call and check in with him, if you haven't already. When I asked if I should suspect things getting worse on Bactrim, he said maybe not, the other antibiotics may have already cleaned most of the toxins out...or something to that effect. But was more concerned about the effects Tindamax could have. And to start it off slowly. Your dealing with different symptoms, but he did say he'd expect to see improvements begin in about one month (I'm leary of this after everything I've been reading and don't want to get my hopes up) Sorry I don't have more suggestions!

  17. LLMD visit update

    in PANS / PANDAS (Lyme included)

    Posted

    Hi,

     

    I thought I'd post this here in addition to the Lyme Board, since we've been on the PANDAS board for so long and some things I thought were strep now look like they were Bartonella...see below. My bet, is, too, that if you experience PANDAS herxing when starting treatment, probiotice and detox ideas could help, too.

     

    I brought my dd8 (65lbs) to see Dr. H. in Newton, MA yesterday and was very happy with how the visit went. Dr. H. was very warm, welcoming, down to earth and, most importantly, knowledgable. She listened very closely, reviewed the history I had put together and took lots of notes herself. She was very good with our dd, too…gentle, friendly and kind.

     

    She confirmed that my dd had been exposed to Bartonella based on the Igenex results. Even though we don't' have the Western Blot back yet, she expects they will be positive. But she said that the medication protocol we are currently on (1 tsp Zithro/day and 1 tsp. Bactrim 2x/day prescribed by Dr. B) is good for both Lyme and Bartonella. So she wouldn't change anything even if they are positive. She said if my dd doesn't improve more soon, we could increase the Zithro (from 1 to 2 tsp/day).

     

    I printed a few pictures of an unexplained rash my dd got in late spring 2007. Since our PANDAS diagnosis, I've always wondered whether it was a strep rash. After the Bartonella results, I've wondered if it might be a lyme rash. When Dr. H. looked at them, she noticed something I didn't see in the photo– and that was some very faint stretch mark lines. So now I can clearly see them and think that this may have all started a few years ago…(Damn those pediatricians who just said it was viral.)

     

    In addition to the abx, she recommended some other things or confirmed what we are doing is good:

     

    Probiotics: Saccho B in the morning at the same time as abx is fine; Culturelle a few hours after evening dose.

     

    Inositol: I started giving this knowing it could possibly help the OCD and it is for liver detox. She said this is good for anxiety and is very safe. She said we could go up as high as 5000mg/day.

     

    Epsom Salt and Soda Bath

     

    If things are really bad from a Herxing standpoint, she said Charcoal capsules (at least 2 hours away from meds) are a great absorber. Another absorption option she said we could try is "pectasol" made from the inside of the rinds of citrus fruit.

     

    She also recommended we add fish oil and had a highly concentrated liquid available in her office from Pharmax. It has oil of orange in it for flavor. My dd had no problem taking about ¾ tsp. of it. 1tsp. has 750mg DHA and 1050 mg EPA, with total omega-3 of 2250mg. She said this could help with brain inflammation.

     

    She said the treatment will probably take at least a year. She would want to see at least 2 months symptom free as well as lower Bartonella titers. Since my dd did so well over the summer, but has had a terrible winter, she said she would hesitate stopping treatment before the end of next winter regardless.

     

    One last thing she said we could try if we wanted to is a homeopathic treatment for strep called San Strep. The way I understood it is that when strep bacteria die, the dead remains of the cells can hide in the tissue – so there is no way to culture them out and the body's immune system doesn't know they are there. The San Strep binds to the cell wall deficient form of strep allowing the body to recognize them so the immune system can clear it. As I think about this more from a PANDAS standpoint, I'm not sure how I feel about it. Do I want my dd's immune system to recognize strep? I'm going to have to follow up with a question about this.

     

    All in all, a good appointment. With traffic, it took us a litte more than 1 ½ hours. But only 45 minutes home. Much better than the 4 to CT. We follow up in 2 months.

     

    I don't think Dr. H. is very experience with PANDAS...she was not familiar with the Cunningham test (but did want to see the article that comes with the test results so she could familiarize herself with it). So my bet is that she would be very open to exploring it and learning about it if you are looking for someone in the Boston area who is, at a minimum, not a skeptic.

     

    In the meantime, on a slightly different note, I got a call late yesterday from Dr. J's office to schedule an appointment for both dd and ds. Because there are two, we can't get in until August. I asked the person calling me if they ever refer to Dr. H. and she said they do give her name out as a LLMD – but can't say much more than that….

    So I have the appointment with Dr. J. just in case. If I don't think it's necessary at a later date, I'll cancel.

     

    Sorry for such a long post. I hope it's helpful to some.

     

    Kara,

     

    Thanks for all the info. Glad things went well. Definetly want to try some of your doc's suggestions.

     

    darlene

  24. Dr. Jones - Cool guy!

    in PANS / PANDAS (Lyme included)

    Posted

    Just returned from our first visit with Dr. Jones. Wonderful man. He does not seem 82!!!!! Undivided attention for nearly 2 hours. He knew everything about her before we arrived, memorized her story apparently. We had to offer to leave his office, he just kept telling stories of successes and asking/answering questions. Great way with kids. The best part was, during our visit he called Dr. B. , and when he got him on the line, he put it on speaker phone. They both discussed our daughter's health with us listening! Latest blood tests faxed from Dr. B's office indicated high anti Dnase B titers (993) and high ASO titers 270. These have both gone up since Sept when she began abx, strangely. Dr. J suspects Bartonella in addition to the positive lyme, so he added Bactrim. So she is now being treated for both pandas and lyme...Augmentin, Zithromax, Bactrim, and Tindamax on weekends. Ran tests right there in the office (after emla cream) for cunningham and Igenex (second time) and urinalysis. Pretty convenient, and the lab techs and staff are awesome! Everyone relaxed and wearing jeans, Dr. J in a jogging suit. DD10 had immediate herx by the time we arrived home (6 hours after taking the bactrim) which we have seen before. So can't touch her, she can't put shoes on, showered for about 30 minutes, cried for an hour, can't touch handles, pets, etc. etc. Crazy! But herxing is a good thing, as we know, and this is only the second time she has ever had one in 7 months, so we are feeling positive.

     

    Laura,

     

    I sent you a PM. So glad to hear it went well. I've been thinking about you. Wasn't sure if you took that appt. So happy for you!!

  25. Really discouraged - bumped out of PreK

    in PANS / PANDAS (Lyme included)

    Posted

    I've had all the same questions. I'm concerned his twin brother is showing some symptoms but I am TOTALLY Lyme paranoid at this point. Never thought of it would happen to my little guy, when he got it he was only 2 or 3. But I too am not sure about co genital or not. I never had symptoms until after my pregnancy. And they're mild, so right now, we're focusing on testing for his brother. Strange you mention the movement thing...I always called Colin my wiggle worm, because he was always scrunching up and moving like he was in discomfort. I felt terrible for him and would feed him only a little at a time. He was also EXTREME active for a infant. But, his twin never had any of those behaviors. So, if it was co genital, I would think both would have displayed something in infancy. But who knows. This things seem so illusive and confusing. :blink:

     

    Yes Aidan was so wiggly - I think he rolled over very early but it wasn't like it was something intentional that he had done he was just so squirmy it happened. Also my 2 other kids sat up (barely) for their 6 month picture at their baptism but Aidan could not - I really thou gt he was strong enough too he just could sit still enough to hold it.

     

    It took me a while to really think about it but it is interesting about your twins with one having similar symptoms as my son from infancy (that I am thinking may be attributable to Lyme) while the other one did not have these symptoms. So, does it mean that the symptoms from infancy are not really symptoms of Lyme? Or could one of your twins have got Lyme from you congenitally but not the other? Or did they both get it and it is more actively attacking one twin over the other? Or did it make infect a certain part of the body in one twin but not the other(such as the brain since there are neurobehavioral symptoms)?

     

    It does seem to affect some people more than others. I also think that from stories I have read that it can be in your system and not really have a big affect until all of sudden you have the symptoms often brought on by some other trauma or stress (or maybe some never get much symptoms at all). Or some may have one type of symptom at one time and another at another time. I guess that is what I see in my other children - like the 2 years ago my son Sam got stomach aches and felt dizzy and it seemed to be worse once a week. He missed school every Thursday for a few weeks in a row, He also had one incident of a racing heart at that time. The doctor never found a reason for it and it eventually stopped. But now I am thinking - was that Lyme?

     

    I am curious if your twins are identical or fraternal. This could be really interesting to a researcher if these symptoms do turn out to be from Lyme!

    Elizabeth

     

    They're both boys and fraternal. So, they're very different in many ways. We still have to have his brother tested for Lyme.

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