Jump to content
ACN Latitudes Forums

msimon3

Members
  • Content Count

    111
  • Joined

  • Last visited

  • Days Won

    4

Reputation Activity

  1. Thanks
    msimon3 got a reaction from eacampbell67 in Most Effectives Treatments for PANS/PANDAS   
    If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters".  The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease.  You will need to make a decision and choose a side.  If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl.
    Here are some links that may be helpful:
    http://columbia-lyme.org/patients/ld_chronic.html
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  2. Thanks
    msimon3 got a reaction from bobh in Most Effectives Treatments for PANS/PANDAS   
    If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters".  The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease.  You will need to make a decision and choose a side.  If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl.
    Here are some links that may be helpful:
    http://columbia-lyme.org/patients/ld_chronic.html
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  3. Like
    msimon3 reacted to rowingmom in Tested positive for Lyme. Now what?   
    If your daughter has tested positive for lyme I would investigate the possibility of coinfections.
     
    DD13's PANS was caused by bartonella / babesia - the treatment of which resolved her PANS/PANDAS symptoms. Only a LLMD or LLND will realize that lyme/coinfections can result in PANS. Ours did and told me right away that if we were successful in clearing bartonella her tics, raging etc. would improve.
     
    Most PANDAS treating doctors continue to focus on strep antibodies as the cause.
     
    Our LLMD initially treated bartonella with abx for 2 years and recovered her to approximately 80%. I continue to treat bartonella and an underlying, negatively testing babesia with Buhner's herbal antimicrobials. It has taken 4 long years but she is now totally asymptomatic.
     
    Don't be averse to treating with abx but keep in mind that:
     
    1) you will need to supplement REALLY GOOD probiotics and fermented vegetables to keep the gut functioning properly, A significant portion of the immune system is housed in the gut and abx will impact immune function. This includes the antibiotic action of pesticides/glyphosate in food. Stop eating antibiotics in food, and that includes conventional grains and legumes which are dessicated with glyphosate to aid harvest, and the meat of animals that are fed conventional grains.
     
    http://www.mdpi.com/1099-4300/15/4/1416
     
    http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf
     
    2) if you are not finding improvement with the abx your doctor choses, your daughter may have other underlying infections that are not showing up on tests. This may be because:
     
    a) the doctor hasn't tested for the infection (ie your daughter may have bartonella, babesia etc. because they are known to be significant coinfections but your doctor didn't test for them. Because he has found lyme (or strep in the case of PANDAS) to be positive he will assume that lyme (or strep) is the culprit and treat only that. Lyme (or strep) treatment will not address bartonella or the other coinfections.) or because the tests that are run are not specific for the species of organism that your child is infected with.
     
    DD13 tested negative for both Babesia duncani and B microti, the 2 standard babesia tests. She was also asymptomatic for it - all of her symptoms were bartonella. It was only when I trialled Buhner's babesia herbs that she had a herx (die-off reaction caused by endotoxins released from dying bacteria which cause specific cytokine (inflammation) cascades) which involved the well known babesia symptoms of air hunger, chest pressure, dry cough, large muscle (thigh) pain. It was at that point that our LLMD clinically diagnosed her with babesia and gave me the go ahead to treat with babesia herbs.
     
    You will spend a lot of time researching in the next couple of years. Please don't leave the fact-finding only to your chosen doctor. It is important that you educate yourself on your daughter's illness and the reasons why her immune system was incapable of handling it in the first place.
     
    Here I go - our children are compromised (and not only our children, but the many, many adults who are developing diseases like MS, ALS, Parkinsons, cancer - all with no visible underlying cause because doctors don't associate those diseases with infective organisms), not because they happened across an unlikely/improbable bacterial infection. These infections are everywhere and carried by many arthropods, not just ticks. There is a reason why some people succumb; their immune function has been compromised in some way and they are incapable of keeping bacterial numbers from overwhelming the body, and why other don't.
     
    In my mind our children are compromised by:
     
    1) their aggressive vaccination schedule (the metal adjuvants and other constituents result in immune-overactivation/dysregulation),
     
    http://www.ageofautism.com/
     
    http://www.vaccinationcouncil.org/
     
    2) the antibiotic action of pesticides in food which kills beneficial probiotic bacteria in the gut resulting in overgrowth of pathogenic species which are not conducive to proper immune function/regulation,
     
    http://www.momsacrossamerica.com/blog
     
    http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx
     
    3) insufficient nutrition.
     
    https://www.facebook.com/Dr.Terry.Wahls
     
    https://www.youtube.com/watch?v=KLjgBLwH3Wc
     
    It is a long, paradigm changing road; keep an open mind.
  4. Like
    msimon3 reacted to Surfmom in New Parents: Advice From the Trenches   
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist.
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game.
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition.
    5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye.
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health).
     
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to.
     
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf.
     
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them.
     
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
     
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .)
     
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.
     
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life.
     
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
     
    I am not editing. I used to. I don't anymore. See? LOL
     
    (Ok, confession... I came back and read this AM, and gently tweaked the typos).
     
    A thousand blessings your way!
  5. Like
    msimon3 got a reaction from mama2alex in "Borderline" disease?   
    If what we are looking at is a Western Blot test from Igenex, then yes these IgM results would be characterized as positive by Igenex due to two starred bands being positive (31 and 41).
  6. Like
    msimon3 got a reaction from lambtsj in confused. lyme? strep? band 39 IND?   
    The Western Blot measures antibodies that stick to certain proteins denoted by the bands. These bands were standardized by breaking up and sorting the proteins of the Borrelia burgdorferi bacteria. For most commerical labs (e.g. Labcorp, Quest) the bacteria used was strain B31, while other labs like Igenex also use strain 297 to make a more comprehensive test.
     
    Band (kDa) 41 is flagellin, and will be positive for any bacteria that have flagella.
    Band 39 is flagellin for Borrelia, but many species and not just B. burgdorferi.
     
    Most LLMD's will recognize that the WB test is a tool to help with the diagnosis, but is not THE tool to determine diagnosis. The WB will be negative if your immune system is not making antibodies to strains B31 and 297 of B. burgdorferi, which might mean you do not have Lyme or it might also mean that you do and you are not making antibodies. Or it might also mean that you are infected with a different strain or species of Borrelia which we technical do not call Lyme disease even though it makes you ill (e.g. B. miyamotoi).

    The clinical symptoms you list certainly fit with Lyme disease. I would expect that your LLMD would focus on those symptoms rather than the WB test results, and try various treatment protocols to see if the symptoms get better or worse. The protocol needs to address variation of the physical forms of the Borrelia, specifically its spirochete, cell wall deficient, and cyst forms. Treatment for only one form may yield only temporary benefits and cause risk for continued infection and symptoms.

    And, of course, you could have strep *and* Lyme. But treating for both can be done with a single protocol.
  7. Like
    msimon3 got a reaction from BeeRae22 in How do you know if Lyme Treatment is working?   
    100% agree with Rowingmom. A LLMD will put together a protocol that attempts to kill the three known forms of Borrelia and avoid monotherapy which may lead to chronic infection / relapses.
     
    Eva Sapi has a nice study here on Doxy's performance:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
  8. Like
    msimon3 reacted to rowingmom in How do you know if Lyme Treatment is working?   
    I think the present thought in the Lyme Literate community is that doxy simply drives the spirochetes into cyst form.
     
    Symptom resolution occurs at this point, but spirochetes can remerge from the cysts causing relapse. This is why antibiotics that address all three forms; the cystic form, the acellular form and the spirochete form, need to be used.
  9. Like
    msimon3 got a reaction from SSS in How do you know if Lyme Treatment is working?   
    We worked with a PA briefly and initially on the thorough intake process. Now we primarily see a pediatric CPNP and Dr J.
     
    We had similar concerns initially since we are a 10 hr drive from DC. I recall we either called or emailed them to get a good feel for their expertise before we made the trip. Once there in DC, we were pleased we made the trip. They were the first providers who sat down and went through a complete medical history from start to finish to get a "big picture" view -- all other providers in comparison seemed to focus only on areas related to their specialty.
  10. Like
    msimon3 got a reaction from dcmom in Anyone have research linking vaccines to ASD?   
    I enjoy posing the following question to vaccine advocates and those on the fence: "How many recommended vaccines would you take before you stopped? 20? 100? 1,000? 10,000? At what point does taking all recommended vaccines seem dangerous to you?" Everyone I ask pauses and squirms at this question, because it reveals that 1) we know vaccines can help us build "herd immunity" but also 2) there is a cost for everything, and more of a good thing is not always good.
     
    While it is not generally accepted or proven that vaccines cause autism, there have been studies that indicate links between vaccines and various illnesses.
     
    Here is one that suggests that the use of adjuvants (the stuff they put in vaccines to amplify the immune response) correlates to a higher incidence of autism:
    http://www.ncbi.nlm.nih.gov/pubmed/22099159
  11. Like
    msimon3 reacted to cara615 in Anyone have research linking vaccines to ASD?   
    I will be completely honest - no flames please (although I think y'all are on the same page as me). I was a vax skeptic when my kids were born. I did not allow the hep vax to be given in the hospital. One of the nurses told me that I could get her fired if I did not give it to my kids. I told her that is not my problem!! My kids are my responsibility!! At our ped's office I had them on a VERY delayed schedule. 1 shot a year. I had a pediatrician come at me with threats that i was harming my kids and I should be locked up!
     
    At 6 years old my kids have had dTAP, polio, prevnar, HepA, HepB and HIB - no boosters for any of these except the dTAP. So maybe in total 7 shots each. I stopped vaxing completely when they were 4 years old. I have to write a religious exemption for every school they attend.
     
    Ok so fast forward, I now have one kid with PANDAS. Our integrative MD (dr. Tasneem Bhatia - google her) told me straight faced that I saved my son from autism. She said that if i had continued with the vax's he would have regressed and gone further "on the spectrum".
     
    Our new Dr. (Bradstreet) studies both Autism and PANDAS extensively and has proof that autism is also immune system based. He showed me some complex diagram about how these macrophages from the mother get into the child in utero and take up residence in the child's brain. He lost me after that point but I know that macrophages kill infections and are an integral part of the immune system.
     
    Vaccines create artificial heightened responses from the immune system not including all the preservatives and heavy metals that are toxic to the body. This combination given to a child who is already VULNERABLE from birth can cause the perfect storm of reactions thus creating an environment for neurological damage to occur.
     
    I look at it as I saved my son.
  12. Like
    msimon3 got a reaction from rowingmom in Anyone have research linking vaccines to ASD?   
    I enjoy posing the following question to vaccine advocates and those on the fence: "How many recommended vaccines would you take before you stopped? 20? 100? 1,000? 10,000? At what point does taking all recommended vaccines seem dangerous to you?" Everyone I ask pauses and squirms at this question, because it reveals that 1) we know vaccines can help us build "herd immunity" but also 2) there is a cost for everything, and more of a good thing is not always good.
     
    While it is not generally accepted or proven that vaccines cause autism, there have been studies that indicate links between vaccines and various illnesses.
     
    Here is one that suggests that the use of adjuvants (the stuff they put in vaccines to amplify the immune response) correlates to a higher incidence of autism:
    http://www.ncbi.nlm.nih.gov/pubmed/22099159
  13. Like
    msimon3 got a reaction from SSS in Effect of Motrin   
    You should confirm with the ordering doctor if you are getting the ELISA, and if they cannot confirm then you may need to find another LLMD
     
    Kidding aside, if the test is like this one, then it is an ELISA followed by a Western Blot *if* the ELISA is positive:
    http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6646
     
    Generally if you see "EIA" or "C6" on your test order or description, then it is the ELISA.
  14. Like
    msimon3 got a reaction from Twomeymk4 in Lyme and Ceftin   
    We have not used Ceftin (Cefuroxime) personally, but it has been shown to be an effective drug against spirochete forms of Borrelia. A key consideration, especially if the infection went untreated for three years, is that the Borrelia is also present in cyst form and L-form which is fairly common. Ceftin alone will only attack the spirochete form, and any living Borrelia can revert from cyst form back to spirochete form and cause new symptoms post treatment.
     
    A good LLMD will have a treatment protocol that recognizes the multiple forms of Borrelia and provides a strategy for defeating them. I would be wary of expecting success from a single treatment cycle of 4-6 weeks with one antibiotic, as it seems to run contrary to relatively modern approaches followed by LLMDs affiliated with ILADS.
     
    Hopefully the 4-6 weeks of Ceftin will clear infections and symptoms, but if not I would seek the guidance of a doctor who can provide a comprehensive treatment protocol for late-stage Lyme disease.
  15. Like
    msimon3 got a reaction from Twomeymk4 in Desperately looking for help.....   
    Several LLMDs will use a combination of antibiotics, not just one, that have shown to be more effective against Borrelia and coinfections. I recall reading a study where the -cyclines are very good at CNS penetration and killing spirochete forms of the bacteria, but they also tend to create relatively more cyst forms of the bacteria. A secondary antibiotic like an -azole is commonly used to go after the cyst form, something like Flagyl or TIndamax. Cycling the antibiotic therapy on and off and on again is also sometimes used to allow time for the cysts to revert back to a form where they are more readily killed. A good LLMD will understand these various forms and have a treatment approach for them. I will PM you with our doc if you are interested.
  16. Like
    msimon3 got a reaction from Emik in Gluten Free and Tics   
    For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia.
     
    Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection.
     
    The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections.
     
    Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.
  17. Like
    msimon3 got a reaction from logismum in Gluten Free and Tics   
    Yes, in our case the rapid onset of tics suggested that something other than food sensitivities were the cause. Based on some collateral IBS symptoms and the guidance of well meaning doctors we did embark on testing for allergies and eliminating diary/gluten/corn as potential causes. We thought we saw patterns between some foods and tic frequency/severity, but eliminating these foods did not lessen tics to a lasting or significant way.
     
    Since that time, we have learned that we are dealing with Lyme and Ehrlichia, and that the tics are likely a result of infection and inflammation. The tics tend to wax and wane based on immune system activity rather than food consumption.
  18. Like
    msimon3 got a reaction from logismum in 25 Years Old - Getting Worse; Antibiotics? Stress?   
    Tics are frustrating since they could be caused by a number of factors, and you are right to perceive that many doctors will simply want to treat the symptom with neuroleptic drugs. In our situation, the waxing and waning of tics are a helpful indicator in "seeing" the current activity of the immunological process, and therefore the absolute last thing we would want to do is take drugs that would suppress tics.
     
    You might want to try to rule out infection and immunology as the source of your tics. If you are seeing Dr T in NJ, keep seeing him, he has a great mind and can help navigate the possible causes with you -- he can definitely help you understand if your tics are antigenic/immunological or not. Keep on the hunt for the answer to the question WHY. If you think your tics might be due to an infection, pursuing blood tests for diseases that could cause encephalitic symptoms or neuropathy is important. Also keeping a journal of all symptoms will help doctors make any clinical diagnosis.
  19. Like
    msimon3 got a reaction from blakes_mom in Newbie needing advice!   
    You may want to consider the possibility of tics being a symptom of an active neurological infection or an effect of an autoimmune process:
    http://www.ncbi.nlm.nih.gov/pubmed/23230453
     
    Many diseases could either infect your nervous tissue directly, like Lyme disease, or cause autoimmune reactions to nervous tissue due to cross-reactivity of the antigen, like M. Pneumoniae / PANDAS / PANS.
     
    I would stay away from CBT and neuroleptic drugs, and instead use the tics as a diagnostic measure of your health. Seek out the counsel of a good doctor who:
    - has a background in infectious disease and immunology.
    - is willing to provide you a full clinical assessment, discussing all health symptoms you had since age four.
    - is willing to order blood tests to assess current state of your immune system, current state of common autoimmune antibodies.
    - is willing to challenge the immunity hypothesis with a "steroid burst" for 21-30 days and see if your tics subside. If your tics go away when on steroids, then it is reasonable to believe that the tics are caused directly by an immune process, or indirectly by inflammation caused by an immune process. If your tics are caused by immune process, you will need to find and work with doctors who can help you explore the possibility of current infections versus past infections. Immerse yourself in resources devoted to PANDAS / PANS and Lyme disease, and recognize that many doctors may be uninformed and not well aligned with current research.
     
    Change in diet has not been helpful in our situation, however you can become familiar with the idea that chronic inflammation could lead to "leaky gut" or intestinal permeability which could lead to a variety of neuro-psychiatric symptoms. In other words, if you have dietary sensitivity you should manage it but also consider to role of inflammation as a cause to that sensitivity. http://www.ncbi.nlm.nih.gov/pubmed/22906518
     
    Hope this helps. You have a wide variety of options to consider, but you are on the hunt for the cause which is great. Stay on the hunt until you find it!
  20. Like
    msimon3 got a reaction from Kathy4Him in igenix lyme testing   
    We did the full coinfection panel, and we were glad we did. Our rationale was that Lyme testing is not perfect, and more tests correlating to a positive result or a negative result would be good to have. Statistically speaking, more data would be better than less data, especially when confronting false positives or false negatives. Also, since Lyme is one of many tick-borne diseases then there is a good chance that we would see one or more coinfections, which we did. We also paired the Igenex test with a Western Blot from a standard lab (Labcorp) to look for any correlation on WB bands.
×
×
  • Create New...