Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by FLmom

  1. Now that I look at her lab work, I see that just Lyme was tested through IGenex. Bartonella was through Quest, and I don't see Babesia at all. I find this strange because I went down this long road with my son, and wanted to make sure I covered all my bases when I had her tested. But it seems that I remember that since my insurance would cover the Bartonella through Quest (and I thought Babesia too) that we would start there.
  2. I have an 11 year old daughter, who I suspect has some type of Pans going on. We've been down this long road with my now 15 year old son, and he has been doing great for the last 4 or 5 months. I've seen little issues with my daughter but she hasn't had an all out OCD onset. Back in the fall she had a pretty dramatic onset of anxiety with lots of stomach aches, not eating, breaking out into sweats, feeling faint. After a series of tests, integrative doc put her on amoxicillin and she was better after 2 days on it. She had Igenix done then and IGM results were band 31 and 41 IND, and IGG 39 IND. The doc felt 'maybe' lyme but not conclusive. She had another onset a few months ago, and once again after a few days on amoxicillin she was better. Except that she has continued to have a fear of choking. She will come in my room at night and ask if her face is red, because I guess, to her, that means she is choking. She says she wants to eat but she always feels like she is going to choke so she is eating very little. I have more amoxicillin, but they are capsules, which she can't take right now, and I have requested a liquid. I'm also wondering if there is any point to have a Cunningham Panel done, with the previous IGenex results, plus the trial and error we have done, would it give us any more of a picture of what is going on?
  3. Several months ago I posted about seeing signs of PANDAS/PANS creeping up in my daughter(9, then now 10)--I think it was mostly OCD behaviors that I was picking up on. This scared me because my 14 yo ds is PANS and I was afraid it was beginning in her. Then about a month ago some friends of her siblings were staying over and they all stayed up late and watched Sharknado. Around 2am she came in and said they had watched it and it was really bloody and she didn't feel good and wanted to sleep with us. She hasn't been back in her bed since. For the next few weeks she had tummy aches throughout the day, periods of weakness. I took her to the doctor. She ran blood work with nothing remarkable showing. The big tummy aches have gone away but every night when it is time for bed she says her tummy hurts and wants me to lay with her on a mattress in our room. And as of the past few nights she is totally in our bed. She never had problems sleeping by herself before. Initially I thought the movie traumatized her, but honestly as the 3rd child, she has probably seen similar movies before. (never saw sharknado so don't know how bad it was) I've noticed this past month that her pupils are huge! We went on a cruise this weekend and in all the cruise photos she had the scariest look on her face because of how big they were. So I'm thinking this is some mini-onset of Pandas/pans. No increase in ocd thankfully. But now I'm waiting for that huge onset to occur. My son's appears to by lyme related. (Positive IGenex) We are going to DC Sunday to see a specialist there as treatments he has had so far here has not seemed to help his PANS. I don't even know where to begin with my daughter. I haven't kept our ped up to date on my son because she doesn't really believe in pans. And she has referred my daughter to a GI. I feel like I should at least explore that route, perhaps she does have an ulcer or something. I thought that I would talk to the DC doctor and see what blood work he recommends I get for her and see if our local LLMD will request it. Also the last few nights her leg/knee has been aching. She's had leg aches before so this is nothing totally remarkable, but I'm just trying to fit the pieces together. What she is exhibiting is an onset of separation anxiety, large pupils, tummy aches, leg/knee pain. I hope they are not related to Pans, but if so I'd like to head it off before it gets worse.
  4. We are going September 15. I was encouraged by someone on this board to pursue this and that they are Pans knowledgeable. I don't know about the IVIG. Ginger
  5. How did you find the hypnotist? I heard of someone else who had success with one for OCD behaviors, but I wouldn't know the first thing about finding the right 'kind'. GInger
  6. Strange thing is he hasn't really been in the sun. The boy stays in a dark room playing video games. So could it just be a side effect?
  7. DS14 started Doxy about 3 weeks ago. Today he said his hand has this weird sensation like pins and needles, and it is worse when water or the wind hits it. I thought maybe it was a lyme or herx, but I looked up online and it appears to be a common reaction to Doxy. (people reported this who weren't taking it for lyme). Many of them were saying the stop the med immediately. Has anyone experienced this?
  8. I picked up the Doxy and it is only 100mg. Is that enough?
  9. Can the cysts be tackled after? The A-Lyme Complex integrative doc put him on was supposed to hit lyme in all three forms. DS is also on Grapefruit Seed Extract which I read is a cyst buster.
  10. I guess I should add that ds has taken Amoxicillin and Augmentin, but hasn't taken any antibiotics since January.
  11. I just spoke with my son's local integrative doctor. He gave a few month prescription of Doxy. At this point I'm wondering if I should at least have him go ahead and try it, and then after, say a month, if no improvement go see the DC doctor. With the cost of the appointment plus airfare I'd be looking at well over $1000. So it kind of makes sense to me to at least try the doxy. However, ds has had this for at least 2 years, possibly way more. Is there any chance that the doxy will be effective?
  12. nicklemama, I'm glad you are feeling better! How is your son? I see he had IVIG. I thought I read (perhaps on here?) that IVIG is contraindicated for lyme? Did I confuse that?
  13. Yes, msimon3, that is the office, but with the PA. That is good know they are familiar with PANS. That was my concern.
  14. Why did they start with two antibiotics? I know many people are on multiple. Is Biaxin a form of Bactrim?
  15. DS14 had a positive Igenex for Lyme last month. He has since been taking Byron White's A-L Complex. His only symptoms have always been Pans/Pandas, with no typical lyme symptoms. So I'm wondering how to tell if this treatment is working. The only thing I really have to judge it by is his OCD, which has not improved at all. Mood may be better on some days, especially if he missed taking the complex for a few days. He seems to be in a better mood when waking up for a day or so, but nothing consistent. I am about to request antibiotics, and we may be traveling to DC to see a pediatric Lyme P.A., but I'm not sure if she is familiar with the Pans side of lyme. I am still not sure what to look for, though, to tell if whatever treatment is working. Would I see improvements in OCD? And I'm trying to decide between just asking our doctor here for antibiotics or traveling. Current doc is hesitant to give them to children, but was open to it if that is what I wanted. But since he isn't experienced with treating children with antibiotics I'm wondering if we should go ahead and make the trip out of state.
  16. Also, as for the VCS test. What would my son need to do to take it? Because of his OCD he can't sit at the computer nor touch any part of it. Could he stand, and I click whatever needs to be done?
  17. Thanks for that information. It is something I will re-look into. Can you tell me about the VCS test? I just googled it, but I didn't quiet get how a vision test relates to mold. DS did have a high C4a when tested almost 2 years ago, but came down to within normal limits when retested last fall. He's never had any typical mold symptoms, if that makes a difference (no cough, runny nose, respiratory issues etc.), just the PANS symptoms.
  18. We did the ERMI testing, and it came back as a 2 (I think the scale was 1 to 4), so it didn't seem like a prominent mold problem if it was one. But up until this time ds slept on a water bed, and honestly we hadn't changed any water in there over 10 years. We did promptly get rid of the bed in case it was a source.
  19. I was just at their site looking for info on the urine test for mold. I'm not really sure which of the tests I'm supposed to be looking for. Is this something I could order directly from them and run at home, or would I need a prescription? Does anyone know the cost?
  20. My ds14 just got a positive Igenex result last week after two years of this. (a questionable Western Blot 2 years ago with one positive band 41) LLMD put him on herbs, A-L Complex. He is very hesitant to put someone my son's age on the typical lyme antibiotics. I never understood his hesitation as so many people on this board and others take them and have success. We have one thing for detox, alpha lipoic acid. (Spectracell results were that ds was low on this). I am sure he needs more, but ds is very resistant to taking ANYTHING. I am even going to have to alternate a probiotic one day with the alpha lipoic acid the other day. And yesterday he refused to take the herbs for his morning dose. It's like I have to be ready with a bribe for every dose which is exhausting! Anyway, he's only been consistent with the A-L Complex since Saturday, and maybe I'm imagining things, but his overall mood is much better. OCD still the same, but not depressed/angry/irritable.
  21. Yes, SSS, I agree. I was feeling that too in the office. I just want something that works fast, and the herbs are a slower route. He said he hasn't seen too much success with Azithro and lyme. I think he's seen the most with, oh gee, I think it was Doxycycline, but I could be wrong. Didn't mention Biaxin but will ask about that.
  22. Bartonella and Babesia were negative. Mycoplasma was 0--lowest doc has ever seen. HHV IGG was 1:160, same as 2 years ago. Doc said IGG was evidence of past infection, whereas IGM was normal, and indicated its no longer a factor ?? DS has absolutely no physical lyme symptoms. His only issues are neurological.
  23. The bottle, and what I've read today online, says to start with 1 drop twice a day, and gradually increase. LLMD said to start with 10 drops twice a day and work up to 25. I'm thinking that is way too much! How long have you been using it, and what results have you had?
  24. I just tried to post this but my computer whigged out, and I lost it all, so I'm just going to post the highlights. DS 14 dxed with Lyme today through IGENEX. We've been dealing with pans symptoms for about 2 years, with previous inconclusive bloodwork through Quest. LLMD wants him to take herbal, AL Complex, since it hits lyme in its three forms: intracellular, extracellular, and cyst. DS couldn't tolerate the taste, and since he has major food/OCD/taste issues, I can't see how I'm going to get this in him. Does anyone have any experience with it, or with getting children to take herbals? LLMD said it couldn't be put in juice or sweet liquid. Was wondering if I could buy empty gel caps and put drops in there so he can take it without tasting, but I'm guessing there is a reason they are supposed to be taken with liquid. Also wondering if I should just ask for an extra cellular antibiotic (we've already tried amoxicillin and augmentin with no improvement). LLMD says if he treats it that way it can be pushed into the cyst form. And the herbal will take care of all of it. Sounds good, but do not see my son taking this twice a day for at least 6 months. Ginger
  25. I think I am starting to see some early signs of Pans/Pandas in my dd9. My son13 is my pandas kid-unfortunately not officially diagnosed, but has all the symptoms. And I think my dd16 had pandas, but outgrew it around puberty. She had had OCD from about age 3-12. My mother in law just called me and said my 9 year old just asked her about how you get OCD, and told her she thinks she has it. She told her if she touches something, she then has to touch it with the other hand, and she is worried she will end up like her brother. I've been worried about her for a while. She was always my sick kid-runny nose, cough etc. She never feels good, always says her stomach hurts, doesn't eat well, and a month or so ago came down with a weird case of cellulitis without an open wound. The doctor said she hadn't seen anything like it in her 30 years of practice. She never wants to do anything-just wants to sit on the couch and watch tv or play Wii. When she was little she had to be constantly on the go. In the past week, she did something that made me think 'ocd', but I can't remember what it was right now. So I'm wondering if there is anything I can do to halt this before it turns into full blown OCD/pandas. Should I go ahead and have blood work done? I remember my ds starting out with a little ocd about the same age before his full-blown exacerbation, and I'm scared of what could be ahead for her.
  • Create New...