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Hopeny

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Everything posted by Hopeny

  1. My nephew has had tics since birth. In speaking with an integrative doctor she mentioned 5HTP can help tics in some cases. I am wondering if anyone has tried it for this purpose. We are using it but for sleep/mood. It seems to help for this purpose.
  2. Hi there, Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts. Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance
  3. Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?
  4. We had a longer but manageable herx with rifampin/zith. We definitely saw it for weeks. Burbur from nutramedix was very helpful in managing the rage herxes, have you tried it? We treated for six months before going to rifampin.
  5. I have no direct experience because we decided to pulse abx instead of risking a regression with tindamax, however when it was considered with llmd it was to be weekends only. Based on a number if posts I have read of regression, I would consider stopping if you really see a decline or trying one or two days a week
  6. My two cents would be to consider non PANS causes as well, worth having a neuro workup. good luck
  7. I am by no means an expert on this topic but Steroids are complicated. If Lyme is involved, it will make it worse. Steroids lower your immunity. That said I have needed to give my kids steroids for asthma, croup etc. After a course of steroids, my daughter's mouth infection came back because her immunity was lowered. My mom advice would be if you need steroids for the pneumonia, then it's important to use them. if Lyme is a possibility at all, I would hold off. Regarding Lyme tests, this is also a complicated topic, unfortunately there are no perfect tests.
  8. It seems like only 50% of what they tested actually had what they said they said, some of them even had toxic ingredients.
  9. Agree, Alan MacDonald did a study on Alzheimer's pts (deceased ) brains and a large percentage had Spirochetes in their brains. http://alzheimerborreliosis.net/research/ If this link doesn't show up its Alzheimer borreliosis.net (one word no space)
  10. Everything I have read that I recall said it's not typically found in CSF, http://www.columbia-lyme.org/patients/ld_spinal_fluid.html, though I do know of one case that was diagnosed this way but there was significant CNS involvement, it was a publicized case diagnosed by a neurologist but the patient was in an extreme condition. I'm sure I've over posted this and feel like a broken record but most Lyme Literate doctors don't really go by "positive" or "negative" test, what they look for are Lyme specific bands. Sorry to be so repetitive but it gets complicated for people who have doctors that tell them they don't have Lyme because the test wasn't "positive". (though both my kids tested "positive") so that's why I keep repeating myself because I have read so many stories of people who went misdiagnosed for years for this reason. Quite a number of the bands considered "positive" cross react with other illnesses, while the important Lyme specific bands in some cases aren't even tested. In any case I'm hopeful that the work Advanced Labs is doing will become a more reliable way of diagnosing Lyme. if some cases are uncovered with CSF then all the better!
  11. http://www.biomedcentral.com/content/pdf/1741-7015-11-222.pdf If you can't see the link please google: "DNA barcoding detects contamination and substitution in North American herbal products"
  12. Oh I thought it was difficult to find that way and most often negative. Curious id be interested in reading more about that.
  13. Trinity this article has some more information on the psychiatric manifestations of Lyme http://www.ilads.org/files/publications_pediatric_school_psych.pdf Hair pulling, skin picking etc as far as I know are all compulsive (OCD) behaviors, and as Lyme can frequently trigger OCD it seems a logical conclusion that it could be one manifestation. While my DD not have this specific symptom, she did have skin picking, and we had a good experience with Cognitive Behavioral Therapy, even if you address the medical triggers IMO you still need to address the psychological collateral damage.
  14. PR40 interestingly my 4 yo has stopped thrashing around in her sleep. I did not realize the 5HTP had this effect. There is a big difference. My DD4 has major sleep issues and while I have seen a mild improvement it was not the big bang that I was hoping for. It does not seem to make my 9YO sleepy at all. Both kids had low serotonin on the OAT test. I am curious to retest in a few months, however our dr told me to use 200-300MG for my 4 YO so I am curious as to why she said to go so high based on the information above....
  15. Wow my dr said to start at 100 and work up to 300 for my 4 year old. Is that the dose the chiro recommended?
  16. I just started using if too. What dose are you using for what ages??
  17. I know there are mixed opinions on the DSM but here is the definition. Look at 1 and 2. A. Either obsessions or compulsions: Obsessions as defined by (1), (2), (3), and (4): 1. recurrent and persistent thoughts, impulses, or images that are experienced, at some time during the disturbance, as intrusive and inappropriate and that cause marked anxiety or distress 2. the thoughts, impulses, or images are not simply excessive worries about real-life problems 3. the person attempts to ignore or suppress such thoughts, impulses, or images, or to neutralize them with some other thought or action 4. the person recognizes that the obsessional thoughts, impulses, or images are a product of his or her own mind (not imposed from without as in thought insertion) Compulsions as defined by (1) and (2): 1. Repetitive behaviors (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to rules that must be applied rigidly 2. The behaviors or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviors or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive B. At some point during the course of the disorder, the person has recognized that the obsessions or compulsions are excessive or unreasonable. Note: This does not apply to children. C. The obsessions or compulsions cause marked distress, are time consuming (take more than 1 hour a day), or significantly interfere with the person’s normal routine, occupational (or academic) functioning, or usual social activities or relationships. D. If another Axis I disorder is present, the content of the obsessions or compulsions is not restricted to it (e.g., preoccupation with food in the presence of an Eating Disorder; hair pulling in the presence of Trichotillomania; concern with appearance in the presence of Body Dysmorphic Disorder; preoccupation with drugs in the presence of a Substance Use Disorder; preoccupation with having a serious illness in the presence of Hypochondriasis; preoccupation with sexual urges or fantasies in the presence of a Paraphilia; or guilty ruminations in the presence of Major Depressive Disorder). E. The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.
  18. 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. Aggie it has taken us a good 1.5 years of treatment, and a bit of changing it up to find the right combos. It is a bit bumpy but you can get it under control. My advice is start slow. I waited about 5-6 months to add supplements, partially out of fear of using them and partially because I thought giving the abx time to work alone would give me a better chance with the supplements. I did see a lot of improvement after adding supps, and it's hard to know if I had the right approach or not. Our LLD likened it to a marathon, you start slow and then pick up the pace as you get further in. Bart takes a good long while to get at, and strong medication.
  20. While I know some have had good experiences with it, many have severe allergic reactions to bactrim. My four year old has such a horrendous reaction I am fortunate that a cardiologist we had an emergency appointment with figured out the problem or I can't bear to think about the outcome. She developed high fevers (105) and severe neutropenia. I feel sick thinking about it. Two md's have told me they think it should be taken off the market. Rifampin is a much older and safer choice. Good luck
  21. cobbie I think I recall you are dealing with Lyme. What was miraculous for DD's Lyme pain, as nothing worked and she used to beg me for help, was a compounded low dose arteminisin I buy from our LLD made by Hopkinton pharmacy. DD's pain, after over 1.5 years, went away in about a week after starting this. I tried everything from creams to pills and nothing worked except the arteminisin. Our LLD told me it is very effective for pain.
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