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sf_mom

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  1. Like
    sf_mom got a reaction from FraggleRed in Herxheimer Reaction   
    I thought this important enough to post. In our healing process we have definitely experienced 'flairs' or flipping of the pages..... While I attribute some of this to new exposures, I also attribute some to Herxheimer's Reaction. Over the last 7 months we have definitely seen the saw tooth recovery with a movement up in baseline of symptoms with less and less of reaction to exposures. It has been a long a tedious recovery BUT because our son's primary presentation was TICS we are able to see a very physical response that is easier to measure than emotional.
     
    The body eliminates toxins by coughing, sweating, peeing or pooping it out of the body. Our son has definitely had coughing jags, chapped lips, yellow poops that all come and go with flairs of symptoms......
     
    I guess what I wanted to say to is 'expect flairs' and anything you can do to help your child eliminate toxins will move recovery process along and their reaction to the flairs of symptoms.
     
     
     
    What Is The Herxheimer Reaction?
     
    The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.
     
    A Rose By Any Other Name
     
    Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.
     
    History
     
    The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.
     
    A Medical Example
     
    The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.
     
    For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and they even seem to find it gratifying to experience tangible evidence of bacterial elimination. “
  2. Like
    sf_mom got a reaction from Sanda967 in Looking For PANDAS doctor in Southern California   
    Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test.
     
    Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references.
     
    Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease.
     
    Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/
     
    http://www.cdc.gov/ticks/miyamotoi.html
     
    I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals.
     
    Does your child have a known tick bite at any point in his life?
  3. Like
    sf_mom got a reaction from Sanda967 in Looking For PANDAS doctor in Southern California   
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero.
     
    We have 3 children with gestational Lyme et al PANS/PANDAS/Autism.
     
    I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
  4. Like
    sf_mom got a reaction from infectioncompulsive in Helpful Threads for Lyme & related Diseases   
    Decent Symptom List For LYME/Co-infections.


    LYME DISEASE AND THE CO-INFECTIONS
    07/26/2010

    Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective.

    The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma.

    I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections.

    Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10.

    Lyme Disease


    Arthritis-like joint pain and swelling (often migrating or moving from joint to joint) "Brain fog" with poor concentration, focus, and/or attention Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening Back pain Light sensitivity and/or blurred vision, increased eye floaters Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies) Chronic and/or severe fatigue with minimal stamina Facial paralysis (especially Bell's Palsy) Chronic pain and tender points throughout the muscles of the body Walking and balance problems Headaches Impaired muscle coordination Impaired reflexes Memory loss (especially short-term memory) Muscle weakness Nerve symptoms (numbness, tingling, burning, vibrating, or shooting) Night sweats, clamminess, unexplained fevers, flushing Unexplained weight change (loss or gain) Unexplained hair loss Swollen and/or tender glands Sore throat Testicular / pelvic pain Unexplained menstrual irregularities Unexplained breast pain / milk production Sexual dysfunction and loss of libido Upset stomach with nausea and possibly pain Changes in bowel function (constipation or diarrhea) Muscle twitching of the face or other muscles Increased motion sickness, vertigo, or poor balance Tremors Confusion, difficulty in thinking Difficulty concentrating / reading Disorientation (getting lost, going to the wrong places) Speech difficulties, vocalization problems, problems writing, word block Exaggerated symptoms or worse hangover from alcohol
    Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including:


    Behavioral disorders including impulsive acts of aggression and violence Extreme mood swings between depression and mania Chronic depression Dementia Eating disorders Hallucinations Mood swings Panic attacks Extreme fears or phobias Schizophrenia Personality disorders (radical change in someone's personality) Thoughts of suicide Irritability
    A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including:


    Shortness of breath with minimal exertion Gasping for air Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia) Chest pains / soreness in the ribs Enlarged heart Palpitations Fainting sensations Non-productive cough History of heart murmur or valve prolapse Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern.

    Babesiosis


    Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough

    Bartonellosis


    Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

    http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/
  5. Like
    sf_mom got a reaction from MaureenL in Request for success stories please!   
    It also took a long time for us as well. 4 years and counting.
     
    However, I would consider all 3 of our children well recovered. We were dealing with many of the common issues that are associated with gestational/chronic Lyme: co-infections, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues, etc. We no longer experience the ups and downs of PANS with illness... none of our children currently have OCD or TICS.
     
    Our children have an awful disease but there were many blessings along with that diagnoses. All your efforts on your DDs behalf will by off in ways you will never imagine.
  6. Like
    sf_mom got a reaction from d_four_kidz in Separating PANS from Lyme/Bart   
    PANS can be trigger by chronic Lyme and co-infections.  Are you still treating for Lyme?  Did you treat for any other co-infections?
    We have three children, all gestational Lyme and have been treating ongoing for last seven years.  Our older son was a clear PANS child.  Strep, MMR and virus all within three week period woke up a different child at 5 1/2 years old.  Younger twins had ASD and Asperger's presentation at 2 1/2 years old.  
    They are now 10, 10 and 13 years old.  You would never know of their prior diagnoses.  All are living normal lives.  Even our DD's learning disabilities have reversed.  Eye sight improved, etc. etc. etc. 
    They have had tons of intervention but are well. I would encourage you to revisit the chronic Lyme et al component to resolve PANS 
  7. Like
    sf_mom got a reaction from bobh in Separating PANS from Lyme/Bart   
    PANS can be trigger by chronic Lyme and co-infections.  Are you still treating for Lyme?  Did you treat for any other co-infections?
    We have three children, all gestational Lyme and have been treating ongoing for last seven years.  Our older son was a clear PANS child.  Strep, MMR and virus all within three week period woke up a different child at 5 1/2 years old.  Younger twins had ASD and Asperger's presentation at 2 1/2 years old.  
    They are now 10, 10 and 13 years old.  You would never know of their prior diagnoses.  All are living normal lives.  Even our DD's learning disabilities have reversed.  Eye sight improved, etc. etc. etc. 
    They have had tons of intervention but are well. I would encourage you to revisit the chronic Lyme et al component to resolve PANS 
  8. Like
    sf_mom got a reaction from JenniferG in PANS/CVID   
    Our son has CVID and Lyme et al.  
    He has been treated since the age of 6 and is now 13 years old.  All notable PANS/Lyme symptoms were in remission. He has been getting IVIG for almost 3 years. He still had some fatigue and we were unsure if it was from active EBV (probably exposure from IVIG) or lingering Lyme.  All his subclasses normalized with only his subclass 3s being only slightly positive.  He was recently denied IVIG coverage due to guidelines changing at age 13. He was off IVIG for 10 weeks and as a result went deficient in his 1s, 3s and almost deficient in total serum.  His immune function dropped in half.  Thankfully, he got approved for another year.  His LLMD believes it might be a lifetime condition for him but minimally will need another 3 years of IVIG.  We are bummed his immune system could not sustain without IVIG but still hold out hope there is total recovery.
    I just wanted to add recovery is a very slow process.  However, our son has lived a very normal life and free on PANS symptoms for a very long time.  Most recently, he broke out in a Bartonella rash on his back and hips after many years of treatment and no obvious symptoms. 
    Game changers for our son was discovering the chronic infections and viruses.... he had many.  Treating aggressively for those infections and viruses.  Low dose IVIG for CVID and IV Ozone.  
    Hope our story helps.
  9. Like
    sf_mom got a reaction from AmericanVenus in Igenex Band 41   
    I don't read or post to the forum much anymore but felt it important to tell you our story.
     
    Older DS was 5 years old when he had his sudden on-set. He had just had his MMR Booster, came down with strep and was exposed to a child that had a full body rash and fever (told it was a virus) all within a very short period of time. He woke a different child after these events.... it was a perfect storm. To make a long story short we treated him for PANDAS one year. He did well with treatment but symptom remission was not lasting. Six months post his last HD IVIG (he had three) there was blood in his stool ongoing for a couple months. It was at this point we decided to investigate further and saw LLMD to investigate Lyme.
     
    It turns out the blood in his stool was from an intestinal parasite and the bleeding resolved within 2 days of starting Alinia. We tested him for Lyme and was only positive for Band 41. Because I also had mild symptoms I was tested along side our son and I came back positive. When children are born with Lyme they often do not make antibodies to the bacteria because it doesn't recognize the bacteria as foreign. We then decided to go further with our testing..... I wanted more concrete positive results to prove Lyme. For me, they did the Epitode Band - 31 (I was positive) and for my son they did the Dot Blot test with provocation (he was positive). The Dot Blot looks for the antigen (like DNA) in urine and not antibodies.
     
    Anyway.... we ended up treating him for Lyme pretty much for 7 years. Our son is now 12 years old and currently 100% in remission. It took a long time to treat, recovery was very slow at times but he looks like a healthy young man now. He is 5'8", 115 pounds, in 7th grade, bright, thriving athletically and thinking about going to boarding school for HS.
     
    We recently retested him for Lyme and the only band that was positive was Band 41. When we initially tested him we also looked for viruses and co-infections. He was positive for several infections and viruses but just wasn't glaringly positive for Lyme until we did Dot Blot test.
  10. Like
    sf_mom got a reaction from Gpookie in any reason(s) to repeat Cunningham panel?   
    Steroid use can impact CamKII result..... arbitrarily lowering. You might call lab to discuss length of time of steroid use verses testing.
     
    Repeat IgG Subclass testing, if deficient, will be sufficient to get IVIG approval for CVID.
  11. Like
    sf_mom got a reaction from wisdom_seeker in Immune Deficient, PANDAS and Lyme   
    Yes all three of our children have immune deficiencies, PANS, Lyme et al. Only our 7 year DD gets monthly LD IVIG.
     
    Typically with chronic Lyme deficiencies are common in the IgG 1 and 3 subclasses. All of our children have immune deficiencies in all subclasses inclusive of IgAs and IgMs. Our DD was the most immune deficient with IgAs at 21. She had immediate improvement with IVIG. However, after her 4th monthly IVIG she seemed to be regressing or her immune system finally started to activate by fighting infections and she appeared to be worse. We rotated her antibiotics to address the Lyme and Bartonella "more aggressively" and her recovery has taken off again.
     
    For us, the antibiotic aspect of treatment was as critical as the IVIG.
     
    Our children are not fully biologically related (two children were conceived via donor egg). All have similar immune deficiencies and all have gestational Lyme. We feel that the black mold exposure from our prior home was probably adding to the load on their immune system and probably why they had deficiencies well beyond just the 1 and 3 subclasses.
     
    There are a couple of LLMDs versed at treating with LD IVIG. You might research Dr. Katz from CT. He is a neurologist who treats Lyme et al with LD IVIG and versed at psychiatric presentation.
     
    Here is one blog post.
     
    http://lymediseaseresource.com/wordpress/happiness-istotal-recovery-from-chronic-lyme-disease-ivig-part-one/
  12. Like
    sf_mom got a reaction from Plum99 in Looking For PANDAS doctor in Southern California   
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero.
     
    We have 3 children with gestational Lyme et al PANS/PANDAS/Autism.
     
    I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
  13. Like
    sf_mom got a reaction from d_four_kidz in slow growth   
    DD was in the 7% for weight and at one time her Dr.'s would have classified her with an inability to thrive.
     
    The thing that has helped her the most with proper growth is IVIG for Selective Immune Deficiency. She is currently in the 59% for weight and 71% for height. We also put her on a low dose of DHEA. It is a regulating hormone and children with chronic infection are often depleted due to adrenal fatigue. A 'very' low dose has definitely helped her grow. She has put on some weight recently in preparation for another growth spurt.
     
    Our older son had also not put on weight for almost 2 years. Similarly he was treated for Selective Immune Deficiency and is now in the 64% for weight and 95% for height. He is also on low dose DHEA.
  14. Like
    sf_mom got a reaction from jan251 in slow growth   
    DD was in the 7% for weight and at one time her Dr.'s would have classified her with an inability to thrive.
     
    The thing that has helped her the most with proper growth is IVIG for Selective Immune Deficiency. She is currently in the 59% for weight and 71% for height. We also put her on a low dose of DHEA. It is a regulating hormone and children with chronic infection are often depleted due to adrenal fatigue. A 'very' low dose has definitely helped her grow. She has put on some weight recently in preparation for another growth spurt.
     
    Our older son had also not put on weight for almost 2 years. Similarly he was treated for Selective Immune Deficiency and is now in the 64% for weight and 95% for height. He is also on low dose DHEA.
  15. Like
    sf_mom got a reaction from EAMom in Tick bite - lyme. can we test the bug?   
    Bay Area Lyme Foundation will test your tick for free. They test for 6 different pathogens but not Bartonella and Babesia.
     
    Here is all the information.
     
    http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
  16. Like
    sf_mom got a reaction from LNN in FYI: abx lyme study   
    Me too..... living proof that long term antibiotics were extremely helpful to my recovery from chronic Lyme. I probably picked up Lyme as a child. Tons of tick exposure growing up in MN and camping with my family.
     
    3 years of treatment, almost 3 years in remission. I am healthy, healthy, healthy and leading a normal life again. I do a lot to keep things in remission but do not need ongoing antibiotics. My symptoms were MS/Fibro like: mild seizures, headaches, joint pain, tremors, fatigue, etc. ALL GONE.
     
    All 3 of our children have also had amazing recoveries and have been on long term antibiotics. Treatment has saved their lives and reversed all spectrum systems for our 8 year old twins and all PANS symptoms for our 12 year old son. It has been a long path to recovery but our kids are thriving!
     
    I am enterally grateful to the Dr.'s that were willing to treat our children with long term antibiotics.
  17. Like
    sf_mom reacted to LNN in OCD caused by other infection besides Strep   
    MyLightHouse - I highly encourage you to get Stephen Buhner's book on treating mycoplasma http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_sc_1?ie=UTF8&qid=1459425492&sr=8-1-spell&keywords=bu+bartonella
     
    He explains why it can be so hard to eradicate and offers great herbal options that don't destroy gut bacteria. I'm a Pans veteran due to my oldest child's issues 8 yrs ago, but now my younger child is Pans as well. Because she's allergic to most antibiotics, I've been turning to herbs - with much success. Herbs generally have strong tastes, but we use tinctures and put them into empty gel capsules, and then my daughter swallows the capsules without tasting anything. (but you need to take the capsule quickly or the liquid tincture melts the capsule).
     
    Johnsmom - I will say something "controversial" in that I've personally come to believe that auto-immune diseases are not cases where the immune system has become confused. I think the body is wiser that western medicine gives credit. I don't think the body is inclined to waste valuable resources like macrophages or to cause self-harm with inflammation without a good reason. Recent research has looked at cases of lupus where the primary organ being attacked was the GI system and they found that these cases went into "remission" with antibiotics. They found DNA of infectious bacteria in the gut and think the immune system was (correctly IMO) attacking that DNA as an invader. Whether the DNA was just remnants of past infection or from active infection or from a biofilm colony where DNA of multiple microbes (including self) co-mingle, the study didn't say. But my take away was that the immune system wasn't confused. It was doing what it's supposed to do - not attacking self but attacking an invader doctors hadn't previously identified. And abx helped get rid of that invader.
     
    Now, I'm not sure if abx would be a good thing or a bad thing for colitis. But maybe herbs? Or maybe a stool test to look for bacterial infections or yeast? It's possible that the gut inflammation is a response to something that shouldn't be there. So herbal abx or antifungals (e.g. berberine or capryl) would support the immune system's efforts rather than suppressing it.
     
    As I said, I realize this isn't a commonly held view and I don't mean to start any arguments. Absolutely support your child however you feel is best. Just tossing out a different perspective - as I know there have been times people challenged my thinking and a light bulb went off. Best of luck!
  18. Like
    sf_mom reacted to mama2alex in OCD caused by other infection besides Strep   
    Bartonella can definitely cause OCD. Here's a great article that SFmom posted last Fall: http://www.townsendletter.com/July2015/bartonellosis0715.html
  19. Like
    sf_mom got a reaction from pr40 in nose bleeds   
    In the Lyme world regular bloody noses are associated with Bartonella.
  20. Like
    sf_mom reacted to Albymom in Am I imagining things?   
    You've received excellent advice from everyone on this thread.
     
    I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.
     
    Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.
     
    Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.
     
    Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.
     
    Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.
     
    I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.
     
    I'm sorry you're here, but you're not alone. Best of luck to you and your family.
  21. Like
    sf_mom reacted to LNN in Am I imagining things?   
    First, I'm sorry to hear about your son's struggles and the pain you must still be carrying. Kuddos to you for being so able to talk about it and work toward moving forward. It sounds like you're creating a healthy environment for your daughter.
     
    You say you're not one to panic until it's time to panic. Yes, it sounds like it's time to panic (well, not panic, but to listen to your gut). This absolutely sounds like Pandas/Pans. And your pedi is wrong - the urinary issues are indeed physiological and not psychiatric. While I can't give you any published studies, the urinary issues are a hallmark symptom that was common in Swedo's first 50 cases (published in the 90s). One Pandas neurologist suspects that one of the nerves that regulates bladder contractions becomes inflamed and causes frequent contractions. It is not "in your head".
     
    It sounds like there's an infection that isn't being eradicated. You can try to work with your existing medical team, but most of us old timers have found this to be an wasteful approach, both financially and in terms of time wasted. Your best bet is to see a Pans specialist. There's a list of helpful doctors pinned at the top of the helpful threads at the top of the main Pandas forum page and you can get a good list here http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    In addition to Pandas, due to your family's history, I'd encourage you to learn about methylation. Methylation is the chemical process that, among other things, helps the body create neurotransmitters. If you have certain mutations on certain genes, this chemical process can become impaired. If you know you have certain mutations, and you have psychiatric symptoms that can come along with these mutations, you can use diet and supplements to help the body work around these mutations. So if you have a mutation that causes you to stay high in adrenaline longer than most people, you can take extra vitamin B3, which helps the body break down adrenaline. If you have a certain mutation on one of the genes that helps create serotonin, you can supplement with specific forms of vitamin B9 and B12 and help the body's efforts to make serotonin a little more efficient. This has helped my daughter immensely - both infection and methylation defects create bi-polar mood swings and depression in her. Treating both Pans and methylation has improved her outlook beyond words.
     
    Listen to your gut and pursue Pandas treatments for your daughter. The faster you get this under control, the easier the journey can be.
  22. Like
    sf_mom got a reaction from LNN in LYME- Give me your thoughts.   
    LLM said it all so well that I have very little to add.
     
    I too believe the short term use of steroids or longer term small dose steroid can be extremely helpful for reprieve.
     
    Things I would have done differently:
    Checked for mold earlier in our treatment process Considered alternative therapies sooner: Oxidative Therapies, PK Protocol, etc Utilized pulse therapies sooner: Need to train the body to fight infection on its own Sometimes I ignored the obvious due to being overwhelmed, the costs associated with treatment, fighting insurance, treatment fatigue, etc. It all added up to a longer treatment timeline for our children For us antibiotics were very helpful. We also took multiple antibiotics, 2 to 4 at any given time.
  23. Like
    sf_mom reacted to LNN in LYME- Give me your thoughts.   
    My son's chronic lyme was treated with multiple antibiotics taken at the same time (2-4 abx at once) to treat the 3 different forms a Lyme spirochete can take. It was a long road but he's now symptom-free and has been off all medications for 3 yrs.
     
    The best advice I have is to educate yourself ad nauseum. Become a walking encyclopedia of Lyme, the immune system, inflammation and mental health. Because no doctor, no matter how experienced, can ever know your child as well as you do, and will only see your child periodically, and will only know the facts you chose to report, which will in part shape the lab tests (s)he runs. So you need to become the expert, so you know what's relevant, what to look for, when to push thru a "herx" and when to say "hey, this isn't right". Yes, forums can help as sounding boards. But strangers on the internet can only point you in directions, we can't teach you everything there is to know. So read, watch youtube videos of doctors' presentations at conferences, scour PubMed as well as natural approaches to health.
     
    To start, read the pinned Lyme discussions at the top of the forum. They contain some good links. Second, read this series of articles https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/ as well as Cure Unknown by Pam Weintraub and the articles on betterhealthguy.com. These will go a long way in getting a good background on a complex subject.
     
    In terms of doctors, there is no "best" Lyme doctor or "best" treatment. Finding a doctor is like finding a spouse. My Mr Right may not be your Mr Right. Get a feel for the doctor's approach, accessibility and style. I love my LLMD because he presents various options and then asks which approach resonates with my family. But some of his patients have seen this as being "wishy washy" because they're too sick to delve into the details and just want someone else to drive the bus with definitive instructions. So understand your own needs as you develop a relationship with a doctor - just make sure that doctor is an LLMD. In my experience, working with someone who's not immersed in Lyme is a frustrating waste of money.
     
    On steroids - my son did several 3 week tapers of prednisone before he was diagnosed with Lyme (when we thought it was "just" pandas). Two tapers helped immensely, one didn't. Steroids are generally avoided in Lyme because long-term dosing suppresses the immune system (a 3 week taper isn't "long term" IMO) and a short term dose (incl a 3 week taper) won't bring lasting improvement because the source of the inflammation (the infection) will still be there to re-start the inflammation as soon as you stop the prednisone. So if there's an active infection (of Lyme, or any other bacteria or virus), the immune system isn't going to be "re-set" because the immune system is doing exactly what it should be doing - creating inflammation as a way to call immune cells into action. Prednisone in my experience is helpful for temporary relief in a really bad situation caused by a chronic infection or when you're certain the infection is gone and you just want to speed up recovery - or long term use for autoimmune conditions where the inflammation can cause permanent damage to an organ).
     
    So if your child is non functional, there's a place for steroids even in Lyme (IMO). But realize that the improvements probably won't be long lasting. Still, sometimes even a few weeks reprieve can be a God-send in a family that's tearing apart.
     
    Oh - an in terms of having to treat multiple problems at once - yes, you have to. Lyme treatment is not linear. You don't have the luxury of treating just Lyme and then moving on to other problems. Biology is a complex web of inter-related systems. A good doctor may focus on the largest problem first, and then cycle thru other issues. This is like juggling. You may focus your attention on a particular ball at any moment in time, but you can never take your eye off the other balls.
     
    Become well-informed and very organized and methodical. That's about the best advice I can give.
  24. Like
    sf_mom got a reaction from tj21 in Tick   
    Ticks carry much more than Borrelia. As you are probably know ticks can also carry: Bartonella, Babesia, Mycoplasma and many more infections not even testable at this time. For example, Borrelia Miyamotoi is more predominant in Northern CA than Borrelia Burgdorferi and is not testable at this time.
     
    In my world, the 'Lyme World'..... always treat the bite.
     
    You can send the tick to Igenex as well and have it tested for Borrelia Burgdorferi, Bartonella Henselae, Babesia Ducati and Babesia Microti.
  25. Like
    sf_mom reacted to LNN in Lyme doc ANYWHERE   
    The list of LLMDs that fit your criteria - integrative, MD and pediatric - narrows the list to three that I can think of. I will PM you their names. Whether the pass muster with your DH - well, he may need to be willing to meet with them . All have waiting lists. The three I have in mind all arrived at where they're at by being failed by mainstream standards of care. All three have years of seeing atypical patients and having to cast wide nets to help their patients return to good health. In doing so, you start to re-define previously held, narrow beliefs. You'll have to try to get your DH to accept that they may just know more than him in terms of Lyme.
     
    I understand how out-there Lymeland can be. When mainstream refuses to fund (or publish) research, it leaves an opening for out-there protocols and claims. But you and your DH might have a better understanding of the controversy, politics and financial conflicts of interest if you read Cure Unknown by Pam Weintraub (recommended by SF Mom in your other post). It's an easy read and could go a long way in giving your DH a coherent explanation of the state of things. You can also google "Embers Monkey Trials" and research the history of the failed lyme vaccine (thus the financial conflict of interest). https://www.lymedisease.org/lymepolicywonk-embers-monkey-trials-part-2-chronic-lyme-disease-treatment-and-persistence/
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