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KaraM

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Everything posted by KaraM

  1. I say yes and recommend getting to an LLMD asap. the fact that your doctor just said wait to see if you develop symptoms tells me he is not the most knowledgable about Lyme and tick born illnesses. Maybe he'd at least be willing to test to get started. But even if he is, I'd rely on someone else to treat. Kara
  2. It talks about the Elizabeth Wray situation, too, without naming names...
  3. Her name is Kayleen Clute, MSN, APRN

    2604 Connecticut Ave, NW

    Washington DC 20008

    202-714-2415

  4. There is a Nurse Practitioner from Washington DC that observes in Dr. Jones' office at least once a month and is quite knowledgeable about Lyme as well as alternative treatments. She's not a pediatrician, does specialize in treating Tick-borne illnesses. Maybe she can help. I will PM you (or anyone else who wants it) her info .
  5. Hi,

    I am in Salem, MA. I bring my kids to Dr. Jones in New Haven. I myself go to Dr. Jeanne Hubbuch in Newton. She sees children as well. I just chose Dr. J. over her because he just treats kids and has been doing this for over 30 years. But if you can't make it to NJ, then Dr. Hubbuch is a good choice. She is in Watertown.

  6. This is a great reference. Thank you.
  7. Thanks Nancy and Junkyard Jean...so do you feel like treating the PANDAS through antibiotics, IVIG, etc. ended up reducine or eliminating the need to cut?
  8. Thanks for your reply. She is seeing a psych and was just put on a generic form of Prozac...her mother has researched a lot and they've both done support groups. I was just wondering whether there could be a connection to an infection, like Lyme, PANS, PANDAS and if anyone's child had these symptoms and they resolved after treating the LYme/PANS..Because that angle has not been explored.
  9. I think she means that just taking Azithromycin is not sufficient to get rid of the Borrelia bactera. You need to give antibiotics in addition to the Azith. This was our experience. Our dd did improved just on Zithromax for about six months, then took a nosedive. When we discovered Bartonella a few months after that and added Bactrim to the equation, she started to improve again. She needed the combination of the two. (And eventually Tindamax as well)
  10. Hi, Was talking with an old friend last night whose teenage daughter's personality "changed" about two years ago. In addition to depression, she started cutting herself. I thought I read somewhere that cutting was related to OCD, but can't seem to find that info anywhere now. Anyway, I was just curious if anyone experienced this or other self mutilation behaviors with their Lyme & Co child or if anyone can point me to some info they've come across. I've been googling for 20 minutes or so and have searched this and the Lyme forum, but now luck. Will post this on the PANDAS forum, too. Thanks, Kara
  11. Hi, Was talking with an old friend last night whose teenage daughter's personality "changed" about two years ago. In addition to depression, she started cutting herself. I thought I read somewhere that cutting was related to OCD, but can't seem to find that info anywhere now. Anyway, I was just curious if anyone experienced this or other self mutilation behaviors with their PANS/PANDAS child or if anyone can point me to some info they've come across. I've been googling for 20 minutes or so and have searched this and the Lyme forum, but now luck. Will post this on the Lyme forum, too. Thanks, Kara
  12. My dd does an epsom salt bath about once a week. Never caused any issues with diarrhea. In most cases, it has always resulted in a more relaxed child.
  13. My dd is using Zithromax/Bactrim with Tindamax on weekends. She's confirmed Bartonella & Lyme. My ds is confirmed Lyme with a chance of Bartonella. He's on Biaxin and Bactrim, with Tindamax on weekends.
  14. LLM...you always seem to be a few steps ahead of me...I will forever be in your debt. :wub: Although I truly wish you did not have to forge my or anybody else's trail. We just started looking into this last week for our dd who HATES to read, complains of skipping words and lines. She reads at grade level...but just barely. And there is a piece of me that knows she should be capable of more. (Call it the mother's intuition that I have come to now trust more than doctors). The son of a friend of ours was having reading difficulties and they eventually tried the vision therapy with success. So I started looking into it more and called the doctor in Boston that they saw (Dr. Lauder or Lauden). They advised to first have a regular eye exam first, then call them after. So we are starting there. While doing my research, I found a site that shows examples of what text may look like to someone with a convergence disorder. There are a few different varieties. Here is the link if anyone is curious. My dd said she has the word jumping and sometimes the blurring. http://www.childrensvision.com/reading.htm
  15. My dd was originally just on Zithromax for PANDAS. When we discovered Bart, we added Bactrim. She has been on both of them daily since March 2011. It made a difference very quickly...but with definite, extreme herxes at the beginning. Then the herxes got less intense and shorter. She always came out stronger on the other side. So two steps forward, one step back. When we confirmed Lyme in Nov. 2011, later, we stayed the course with those two, and added Tindamax on weekends. It's taken a while, but she is really doing so well right now. My ds has been on Biaxin and Bactrim...for LYme, possible (but never confired) Bartonella. He also got frequent sinus infections and mycoplasma (whih my dd did not) and responded to the Biaxin, which is why I think he is not on the Zith/Bactrim combo. We also just added Tindamax for him.
  16. Suzan, I'm curious, how long did you have the buzzing and how long did it take to go away? It is one symptom that has not budged one iota for me and it can be infuriating. I don't have it in my back, just my head. It's constant buzzing and occasional ringing. Glad you're clearly on the mend and that your kids are improving as well. LLM and Nancy D, thanks for your cheers! Kara
  17. My LLMD started me on Doxy, but I had major photosensitivity, so she switched me to Cefuroxime (maybe that is the same as Ceftin others are talking about). She also added Metornidazole (Flaygl) two weeks on/two weeks off. And just recently, she added Rifampin to those two. I believe the Rifampin also treats Bartonella...which she suspects I may have, even though tests have been negative. Both of my children are on a different combo: one is Zithromax/Bactrim the other Zithromax/Biaxin.
  18. I've been wanting to respond to this for a while and finally have both the time and the energy. It's so great to hear stories of improvement. I feel and pray for those of you who are still not getting results. Two and a half years ago, my dd frequently wished aloud that she wasn't alive. One and half years ago my dd asked by dh to kill her. The other day...she said she wanted to be 10 forever. OCD that was at one point completely interfering with her ability to go to school, to play with her friends, to eat, to sleep, in other words, to LIVE, is gone. She's happy, engaged, wants to be involved in things. She hugs me. She gets dressed in the morning before coming to breakfast. She showers. She eats. She gets to school and gets there on time. She does her homework without melting down. She plays with friends. She is living!!! For the past few years, DS would always complain of not feeling well: sore throats, stomach aches, body aches. He also complained of always feeling either very angry or very sad (and he acted that way as well). He hasn't been sick in months. He's swimming on a swim team, acting in a play, getting along with other kids. A huge improvement all around. We've only treated with oral antibiotic combinations, including cyst busters, probiotics and some minor detox. No IVIG or PEX. It did not improve overnight. It's been a slow road, with many ups and down. But I am optimistic that we are close to the end of this journey. (And I really hope I'm not tempting fate, here.) I feel like I'm making up and down progress...sometimes it's so hard to tell...and it frequently changes. If anything, I'm better because my kids are! Kara
  19. The Lyme testing can be confusing and I think often misleading, especially if you child has been on antibiotics prior to the testing. I don't know if I want to advise you one way or the other. Mommy gut is huge in my book, too. But I will share my story in case it help you consider things in another light. I've stated it before, so sorry if it's redundant. When we originally saw Dr. B. almost three years ago, he ran a regular Western Blot on my dd. Bands 41 and 39 came up. He interpreted the test as negative. At that point, she had been on Zithromax for perhaps 2 months. She had some positive strep titers in previous months, so he diagnosed her with PANDAS and upped her Zithromax dose. She did really well for about 6 months, then took a nose dive. Her brother had strep, so we attributed it to that. But even after we treated him and gave her a steroid burst, she continued to decline. So he suspected another infection and retested for Lyme and co-infections, but this time through IgeneX. By now she had been on antibiotics for close to one year. Her IgeneX Lyme results only showed IND on 41. No other bands. So, negative for Lyme, right? She did test positive for Bartonella, though, so he referred us to Dr. J. and added bactrim. Dr. J. confirmed Bartonella but still suspected Lyme. He tested her through IgeneX again, but it came out the same. Fast forward to November 2011. She was doing really well...probably 90%, but had plateaued. He theorized Lyme may be in cyst form and prescribed a cyst buster (Tindamax) to be given every weekend. This past spring, he ran IgeneX Lyme again and she finally showed positive again on band 41 and IND on the Lyme specific band of 34 and 39 (the one she originally showed something for). What this says to me is that as the Tindamax does it's work and breaks up the cysts, her body is finally making antibodies. Maybe I'm wrong. Maybe the IgeneX tests are just inconsistent and unreliable. But to LLMs point, the treatment we have been using is working. She is 100% 95% of the time. We get hiccoughs, but their pretty small and she recovers from them very quickly. On a different note, my son, who was often sick with strep, was also tested for Lyme. Initially nothing (after being on abx). Then, after not being on them for several months (but getting strep again and myco P), he tested positive for Lyme by IgeneX standards (and very close to positive by CDCs standards). I think strep and Lyme are often found together. If you read Cure Unknown, there is actually a sentence in their where Pamela Weintraub recounts one of her interviews with Dr. Jones. When Lyme was first identified, but the cause not yet know, he suspected it was bacterial (whereas many others thought it might be viral). He thought this because many of his patients that came in with Lyme symptoms also had strep. When they did, he would put them on abx and their LYme symptoms would improve. If you haven't already, I suggest reading that book. Kara
  20. I didn't vote for either, because I don't think the options capture my opinion. The way I look at it is Lyme is one of the many infections that results in PANS. So if the Lyme is successfully treated, the PANS symptoms should go away.
  21. I currently take it two weeks on then two weeks off...not quite the same schedule, but similar. I already had yeast issues before I started it so have been treating that through diet, probiotics and a weekly dose of Diflucan (and thankfully have it under control. It has not gotten any worse since I started the Flagyl protocol.
  22. I'm sorry for .delay. Having trouble with computer while traveling. I can give u four or five llmd names tomorrow when I'm home.

    Kara

  23. Hi Michelle,

    I saw your post. Wow. How scary for you. I've not had any seizure experience so can't offer advice in that dept. I can offer an ear, though.

    You expressed interest in the Salem support group. Where do you live? I am in Salem as were a few others in the group. We also had someone from M'head, Lexington, Hamilton and NH.

    If you want to talk, my# is 97...

  24. I read posts on OCD/Parenting site. One post from Swedish woman. Her child started sudden OCD. I suggested PANDAS. Said I thought someone on this forum was from Sweden. Ends up I was thinking of you. Regardless, most on here & OCDP are from US. Not sure how open medical systems are between Den./Sweden. Can you reach out http://health.groups.yahoo.com/group/ocdandparenting/message/87887

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