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  1. Like
    Hopeny got a reaction from SSS in Anyone have experience with Artemisinin?   
    We had an excellent experience with a low dose compounded version of it from Hopkinson pharmacy. In one week it took away my daughters arthritis pain that had lasted a year and a half, before which nothing had worked
  2. Like
    Hopeny got a reaction from rowingmom in Anyone have experience with Artemisinin?   
    We had an excellent experience with a low dose compounded version of it from Hopkinson pharmacy. In one week it took away my daughters arthritis pain that had lasted a year and a half, before which nothing had worked
  3. Like
    Hopeny got a reaction from MomWithOCDSon in Interesting article on markers for schizophrenia   
    I think this is an important link of psychiatric disease to autoimmune disorder Scientists find genetic ties to schizophrenia
  4. Like
    Hopeny reacted to SSS in Bullseye rash questions--help!   
    I was hoping someone else would reply to this, because my thoughts are tainted with the hardship and strife of trying to treat and recover chronic Lyme.
    And, my answer is not moral.
    Is your dd currently on daily antibiotics?
    If not, and you need some,
    I would lie. I would tell the Dr. it was an imbedded tick,
    you live in endemic state,
    you need 30 days at least.
    Take pictures of the rash for the future if necessary.
  5. Like
    Hopeny got a reaction from MaryAW in Cunningham Results - 19 and Sick of Being Sick   
    Have you had a Lyme and tick borne disease evaluation by a Lyme literate doctor? The symptoms you describe are common with Lyme and other TBds. You may want to take a look on ilads.org
  6. Like
    Hopeny got a reaction from kimballot in Hang in there! We are doing well   
    Great news. So in the end do you think this is Lyme/bartonella?
  7. Like
    Hopeny got a reaction from MissionMama in Bridging the Gap...   
    My DD10 has had Lyme, strep, myco - etc. She was doing extremely well until something sent her off the edge this January. She had a sinus infection but we had also just tried some new herbal remedies and antibiotics, I don't know what it was but it got really scary. Day by day I saw gradual coming back but strong OCD remained. In March I took her off everything, even probiotics, and continued to see gradual return to normal. Recently I decided to start Zoloft because she is 10 now (8 when this started) and I just really want her to have good childhood memories and also to take some stress off her, so she can succeed with the CBT. She had a bad rxn when we tried it once before but she was on Biaxin at that time which I found out interacts with Zoloft. We started her at a minute dose 12.5MG for 3 weeks and now have upped to 25 MG. I am definitely seeing that it is taking the edge off, I see some flexibility coming back etc. Will stay at 25 for 3-4 weeks and see how we do. I recently took her to a neurologist to evaluate her for a migraine. She is a PhD/MD with a special interest in ADHD etc. I discussed the entire history with her so she could get the big picture and while she said she is "on the fence" about PANDAS but will work with other doctors in an open minded way, her thoughts were that my DD is prone to OCD/anxiety etc and that it is exacerbated by medical conditions. I have always thought that a completely holistic approach is needed, and in my case I have widened the spectrum to now include a very low dose SSRI. I would like to give my DD every chance to beat this and for this time that includes giving it a try. Good luck
  8. Like
    Hopeny got a reaction from Char in NAC - is it worth it?   
    We are 3 days in (at 300 MG NAC, doctor wants us to go to 900), so far it has been ok. We have been treating MTHFR for about a month. I don't want to jinx myself but these supplements have really been helping, I feel DD is pretty close to her normal self and her Lyme pain is GETTING BETTER :) Also she had a red rash on her bottom area that is gone, I suspect now that was from yeast which we have been treating with Enhansa. I'm going to go a few more days at 300 and then try 600. I am going to ramp up over 3 weeks.
  9. Like
    Hopeny got a reaction from philamom in New Lyme test   
    I don't know much but my doctor seems to think this is a good diagnostic test http://www.dnalymetest.com/. We ran it today, I will post when we get our results.
  10. Like
    Hopeny got a reaction from SSS in New Lyme test   
    I don't know much but my doctor seems to think this is a good diagnostic test http://www.dnalymetest.com/. We ran it today, I will post when we get our results.
  11. Like
    Hopeny got a reaction from trintiybella in Worse since IVIG - in a very bad place. Nowhere to turn.   
    There is a lyme center at Columbia run by a psychiatrist Brian Fallon. I presume that they take insurance. Might be worth calling him, I called him once and he returned my call but he does not see children which is what I was looking for.
  12. Like
    Hopeny got a reaction from qannie47 in Anyone have research linking vaccines to ASD?   
    At the risk of being a lone wolf and I know this is a sensitive topic, I would discourage anyone from considering not vaccinating their child. as far as I am aware the doctor that claimed he found a link admitted it was completely made up. He lost his medical license. I really urge people to read the research including the publicly available vaers data and read it with a critical eye tk really see if there is a direct causal link. When I studied the data the only vaccine I saw that truly could be directly linked to serious side effects outside of allergic reactions occurring immediately after administration is the menactra vaccine for herpes which I will never allow my children to get. Children and adults are now dying of eradicated diseases such as measles and whopping cough, deaths that were preventsble. I do think there is merit to spacing out vaccines. Tylenol on the other hand I believe has had some studies showing possible causal links. There are other causes that need to be explored. Food additives etc perhaps even the proliferation of devices. How many toddlers do you see glued to iPhones? Gluten etc. my daughter was erroneously under vaccinated by my former pediatrician and contracted what thankfully was a mild case of whooping cough. It was beyond horrifying and it is so concerning to me to think if babies getting whooping cough, measles etc.
  13. Like
    Hopeny got a reaction from Dedee in Pans Docs Consensus Regarding Lyme?   
    Richard Horowitz talks about multiple infections in his new "Lyme" book Why Can't I get Better? It's worth a read. My DD never had a + strep swab before she got Lyme and now we can't seem to get rid of strep. Lyme has wrecked her immune system and seems to have caused a chronic state of inflammation. Our LLMD's have all discussed IVIG at different points. In my opinion the important reason to have a real Lyme assessment is 1) the treatment course would likely be different than just strep and 2) where there is Lyme there are co infections which require different approaches. I'm definitely one who is always ringing the Lyme bell as it's concerning to me to hear people whose kids have fairly obvious Lyme symptoms along with Lyme specific WB bands but are told their kids don't have Lyme and to move on. I'm constantly exploring everything and I would encourage others to do the same. The trouble with Lyme and steroids as I understand is if they are used early on before treatment there is a risk of worsening the case. If its a new case of PANS, with no prior treatment, and there are Lyme symptoms, then it seems reasonable to get a thorough evaluation before trying steroids. If it's someone who has been on abx treatment, then it could be thought about differently. It's the same with IVIG, I'm not a doctor but from reading people's stories it seems that early IVIG treatment without addressing Lyme seems less effective that Lyme treatment followed by IVIG.
    My DD's former ped prescribed what I learned was an extremely dangerous and ineffective treatment for her mild asthma.(pre pandas) I was eventually forced to consult a pulmonologist and wow what an eye opener, I decided after that experience to only use a specialist to evaluate each specific problem. So it's the same as I recommend for Lyme, get an expert evaluation by someone who has seen/treated thousands of cases. Eventually as the PANS model evolves, I think treating doctors will need to gain more expertise around all of the typical infection triggers, just as LLMD's now are starting to better understand PANS. IMO, the treatments can easily converge...
  14. Like
    Hopeny got a reaction from apennysaved in llmd pedi new   
    Penny where are you located and are you able to travel?
  15. Like
    Hopeny got a reaction from SSS in Landmark insurance case for Lyme tx reimbursement   
    I cannot seem to copy the text but there was a recent victory forcing insurance to pay for Lyme treatment, outside IDSA guidelines. Please view on the ILADS Facebook page for more details. This will pave the way for others to get reimbursed.
  16. Like
    Hopeny got a reaction from BeeRae22 in Not sure what to make of this.....   
    Awesome! We did have some pretty spectacular results very quickly with antibiotics of the psych stuff, though it is a long haul don't get discouraged. I think even within 24 or 48 hours of starting Doxy, when that happened I knew we were on the right track. Lyme physical symptoms (pain, muscle stuff etc) took longer. The fastest working abx for us were Doxy, Augmentin and Biaxin. With Rifampin/Zith combo it was more like a slow but steady result. I found we had a really big improvement like 60-70% quickly and the rest has been the long haul. Of course there is hope, with the right treatment, prayer, perseverance and commitment she will get better. With Lyme & co, the spirochete changes forms and so do some of the con infections so you go up and down a bit according to the life cycle and herxing. I frequently felt like I was playing whack a mole. Sometimes it's two steps forward and one back. Just keep learning and watching.
  17. Like
    Hopeny got a reaction from BeeRae22 in Daughter has emergent condition- I suspect PANS and NEED HELP   
    Sorry I didn't realize my mailbox was full, I pm'd you
  18. Like
    Hopeny got a reaction from nicklemama in Is there such a thing as non-OCD or tics P.A.N.D.A.S.?   
    I want to echo the comment about OCD presenting in different ways. My daughter was seeing both a psychologist and a psychiatrist when the avalanche of symptoms was in force, before we figured out going on. When I started learning about PANDAS, and after the Lyme dx, I kept asking the psychiatrist do you think this is OCD? She said no. When we had our first LLMD visit, (not a PANDAS expert, only Lyme & TBI's) he asked, does she have any other compulsions besides skin picking? The lightbulb went off for me.
    Neither the psychologist nor psychiatrist had identified it as a compulsion but it certainly was. Then we realized the fears and other thoughts, suicidality for example, were actually obsessions. Then my sister read me the OCD definition from the DSM (she is a therapist) and I realized it was actually OCD.
    I think my first post on this board was asking the very same question. My daughter never had tics either.
    I am not a doctor or psychologist but the fear of wolves sounds obsessive to me.
    My advice would be not to take the word of any one doctor, no one has all the answers, and not to put any blind faith in any provider.
  19. Like
    Hopeny reacted to SSS in ILADS 2013 live streaming highlights on now   
    And, were ALL 900 tested for Lyme?
    I doubt it.
    Our PANDAS treating Dr.s (one treating, one I used for phone consults/2nd opinion)
    never once mentioned Lyme disease.
    I only tested dd on a 'whim' because of the link/talk
    on this board.
    Frankly, Lyme disease sounded crazy to me.
  20. Like
    Hopeny got a reaction from cobygurl in Has Anyone Tried Cowden Protocol For Lyme?   
    We've had a very good experience with Samento but not so good with Banderol. I am also a huge fan of Burbur for detox. The real Cowden protocol is quite complex so I have just stuck with the few my docs recommended. I do agree with the crowd, if no symptoms just wait. Our integrative MD has recommended Samento generally as a good anti microbial for general use. We are tapering off DD's Lyme abx treatment however I think I will keep her on Samento for a good long while. Once bitten twice shy.
  21. Like
    Hopeny reacted to 911RN in Back from Children's Memorial...test results.   
    So, after all this....was there any suggestion on how to HELP your child?? If this is the 3rd Psych with no diagnosis...do they have any suggestions or meds to suggest that will improve all these symptoms. Diet is great but doesn't sound like it should be the only answer or end all, be all for symptoms. Has he been on any psych meds? This is thoroughly frustrating for you...I know!!
    I have been there, done that for 9 years. My kid NEVER fit in any definable box. Every doc that has ever seen him has said the same thing weather it was Peds, Neuro, Psych or NeuroPsych. Every teacher that has ever had him has told me they have never met another child like him. I got to where I told docs--I don't want you to diagnose him-- I already have.He has Purple Polka Dotted Flying Elephant Disease. (PPDFED). It's one of a kind, nobody has ever seen it and nobody knows how to treat it.
    I told them this diagnosis was just as right as anything they could give me or as right as all the conflicting diagnosis I had rec'd over the years from multiple specialists. I want you to suggest how we can "TREAT" him to make some of this better. I got to where treating just a symptom was OK- let's not try to call it a disease or condition to treat. Lets work on depression or let's look at the OCD behavior or the anxiety and just try to tackle one symptoms at a time. Docs got my point and started working with me and not against me... for a better boy. Not perfect, but better and manageable.
    Not saying you have to do this but this is the tactic I arrived at and it worked better for us. Lamictal helped my son with anxiety. He, too, once ripped all the skin from his toes and soles. Chewed all the skin off his hands. Prozac worked then switched to Zoloft (helped with depression and OCD behavior). We have never needed more prescription medication than that.
    Not sure if this is helpful...feel your pain.
  22. Like
    Hopeny got a reaction from croatianmum in is there a chance for us..?   
    Hi and I am sorry if I am always ringing the Lyme and coinfections bell but it's definitely worth exploring. There is a lab infectolab in Germany that you can send blood to that can do a better test for Lyme. What makes me suspicious about Lyme in your sons case us that it got worse with steroids. Steroids are known to exacerbate Lyme. I believe there are some Lyme literate doctors in Germany and maybe elsewhere in Europe if travel is an option. Ilads.org should be able to give you a list. Typically combo antibiotics are used for Lyme and co for example rifampin/Zithromax, cefdinir/Zithromax, augmentin/biaxin. I am not a doctor, this is only my experience. As everyone else has said if treatment is not working and onset was sudden it begs exploring other infections. Good luck .
  23. Like
    Hopeny got a reaction from junkyardjean in Cyanosis now....   
    At this stage past the basic boo boo I don't count on the ped for anything. Pretty much i am using specialists. Sorry I can't give you any insight into what it cd be but personally I wd consider starting with a pediatric cardiologist. Good luck
  24. Like
    Hopeny got a reaction from rowingmom in Dr.an Extreme Disappointment!   
    I am not commenting on your specific case but there really is no relevance of CDC criteria to Lyme due to conflicts of interests in regards to patents held by the authors. Fortunately for me my children tested CDC positive so we didn't waste years seeking treatment, but many with active cases of Lyme do not test CDC positive. CDC does not consider a number of Lyme specific bands and considers a number of bands that cross react. I put up a post under the topic western blot to explain in more detail. Sorry I don't mean to hijack the thread but I think it's important for parents seeking answers to have the facts about Lyme testing. The book cure unknown is a good source written by a medical journalist to better understand the testing.
  25. Like
    Hopeny got a reaction from BamaMom in Please help..want to put DD is Psych ER   
    I'm so sorry my previously well adjusted happy daughter had suicidal thoughts/ideations at age 8 from lyme/strep. its very worrisome. We had a fairly quick response with doxyciycline in abating the thoughts. Amoxicillin actually seemed to accelerate them. Could you share where you are located? Its important to say that your daughter needs to be watched 24/7, do you have support at home to help?
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