PacificMama

Just want to add as a reminder that ILADS conference is for medical professionals. So the presentations won't exactly be directed to a lay audience. Also wanted to note that in the Introduction presentation listed first on Friday, the MCIDS mentioned refers to Multiple Chronic Infectious Disease Syndrome. Sounds like something I can relate to...

Well, it looks like you'll get a sneak preview, as Dr. Corson is one of the doctors presenting at the ILADS conference friday. It's streaming live (I posted about it separtately). I look forward to seeing her talk.

Glad to hear that you are on a path to healing yourself. I hope things go as smooth as possible for you. And glad to hear that you feel Pixie is stable right now. You said that you wanted to explore what this journey entails before you make any decisions regarding her. Just something to keep in mind... lyme kids do not necessarily experience what the adults do along the way (during treatment). Kids are quite resilient, and if the treatment is correct and appropriate, they can come a long way in a short time. All the best... keep us posted. Mary

Just saw this posted on lymenet. The ILADS conference will be streaming presentations live from the conference (there will also be video available for purchase afterward). Here is a link, which includes Friday's schedule at this point. But it will likely stream all three days. http://ilads.org/lyme_programs/lyme_events_video.html#page=page-1 There's some great things on the schedule. Now I just need to find a way to clear my day so I can watch...

This is an excellent article! Thanks for posting. It really brings together so many complementary treatments (all of which we have utilized along the way). She sounds like a wonderful doctor. Mold is a really important factor with lyme. My llmd urged my sister to have her house tested b/c she wasn't getting better on the antibiotics. She discovered that she two forms of toxic mold in her house that was circulating through the ac system. She feels a lot better now that this has been removed. A friend in California told me that her husband's lyme doctor says he won't treat anyone with mold b/c they simply will not get better. They could not get rid of their mold and they are moving. It is interesting that Dr Corson uses the cd57 test (maybe this is just for older children) and she recommends supplementing with vitamin D (as does my llmd). This was the subject of another thread about the marshall protocol. EMT testing and elimination is also very helpful for some patients. We discovered that my son who was most sick with lyme was sleeping in a place where the emfs are higher than any place in the house (4800 and anything over 1500 is considered highly abnormal). We turned off the power to his room when he sleeps and it reduced the levels to 500. My kids' rooms are on the side of the house by the power boxes (cable, hvac, etc.). I read that smart meters make this even worse. These are meters that constantly broadcast from your meter to the power company. They have them in parts of San Fransisco I read. All this "progress" may be killing us :-). What Corson does is what holistic mds do to heal anyone who is sick (lyme, cancer, autism, etc.) It is overwhelming for a new lyme patient but it offers so many possible ways to help your child. It is fascinating. This is the future of medicine, although insurance may not cover it unfortunately. I have known about her, but just saw the article link posted on the lyme parent board for someone trying to determine if congenital lyme. I've just never seen such a thorough explanation of a clinical evaluation for pediatric lyme and other related infections. And of course you have to love any doctor, who is a mother herself, and has dealt with the same disease with her child! Mold! That's our next step. I'm afraid of what we'll find...

Hi, I actually have no idea as to what kind of contact he has with his own patients. I'm not even sure how many patients he himself takes on. Are you actually trying to get in as a patient? Or just learn more about his protocol? You know, as much as I respect his experience, I don't think he'd be someone I'd actually choose to treat my child. I mean him no disrespect. I personally am more interested in a doctor who is more interested in being a day to day practitioner. For just the reason you have stated -- because I need them to be available! Of course, I want that doctor to be paying attention to the latest research, and constantly learning. And I do not know either way, but I think Dr. Corson would be someone I would love to have evaluate my child. I understand she gives a 3 hour initial exam -- very detailed and thorough. Beautiful! She does speak at the larger lyme conferences, etc -- but she is primarily intersted in practicing. I think Dr. Klinghardt is more involved at a higher level, not exclusively as a practitioner. Hope that clarifies my thoughts Seriously, I think you are going to end up with soooooo much knowledge after your appointment with Dr. C (and it looks like she practices a bit of what Dr. Klinghardt preaches as well). Mary

Well, probably both. He's a phD electrical engineer -- not a medical doctor or researcher. My gut instinct, plus the numerous critiques I have read, say that intentionally depriving yourself of vit d is not good. (among other critiques of his plan). Additionally, using this plan takes one away from using other means to combat these VERY COMPLICATED tbi diseases. I would just rather take the word of a doctor who spends all day, every day, treating or researching in the specific area of lyme and other tbi's.

I also was very interested in that she really approaches things on such a holistic level. And that she understands so much about how many layered infections may be present when the body's immune system is compromised by lyme/other. And this quote was interesting as well (sort of buried near the end): Neurological or neuropsychiatric signs and symptoms are often the first and only signs of infection. They are also the most common indication of persistent infection after inadequate treatment. Spctmom: I'll be interested to hear how your appointment with her goes.

Hi, As to Marshall examing your child, the answer would be "no". That's because he isn't even a doctor! As I posted before, there is not much evidence that this works for lyme. And in my opinion, it's dangerous. As to Klinghardt, I don't know anything about any secrecy. He has an extensive web site, has published tons of articles. There are various videos out there about his presentations. His medical practice is in Seattle. He is very in demand with his time, and I would imagine extremely busy. I just don't see someone this busy being able to return phone calls/emails to people who are not his patients. I'm not at all advocating for him or his protocol -- just giving my opinion about what I know of him. I have read quite a bit, and have seen some of his presentations, and I think he has a lot of valuable insight about these diseases. I've never tried to reach him, or follow his advice to the letter. But like most people probably, I pick and choose from various sources according to my comfort level, pocketbook, and what seems right for us. good luck. Mary

For those of you parents already on this journey, and for those of you who might be considering the possibility that lyme or related pathogen(s) play a role in your child's illness, here is an excellent article. It is a fairly lengthy interview with Dr. Ann Corson -- one of the few exclusively pediatric lyme doctors in the country. The article discusses how she would clinically evaluate a child, testing, treatments, congenital considerations, etc. It is VERY THOROUGH and DETAILED description of very specific symptoms and evaluation. She practices in Pennsylvania. Here is the opening paragraph, followed by the link: Saving Our Children: Evaluation and Management of Pediatric Tick-Borne Diseases Dr. Ann Corson had nearly twenty years of experience as a primary care doctor when she was faced with one of her most complex and challenging medical cases. Her only child was literally dying from an unidentified illness without clear answers. It took three years for her to more fully understand the illness that was ravaging her son's body. It was at that time that Dr. Corson realized "how totally inadequate my 'ivory-tower' medical education had been regarding tick-borne diseases." As a result of her own son's personal struggles with Lyme disease, Dr. Corson has emerged as one of the most respected Lyme-literate medical doctors (LLMDs) in the field. After discovering the etiology of her son's mysterious illness, Dr. Corson feverishly read the scientific literature and studied with respected Lyme clinicians Dr. Joseph Burrascano, MD, and Dr. Charles Ray Jones, MD. She started her own practice devoted solely to the treatment of tick-borne diseases. Her mission has become to help "those mothers who otherwise would have to watch their children slowly decay without knowledgeable doctors." http://www.publichealthalert.org/pdf/2009_10.pdf

I would really do your homework on this, and use extreme caution. I looked at it some time ago, and read the criticisms (for which there are many). If you search lymenet you will see some contentious discussions, and I don't think there are the successes to back it up (despite what Marhsall web site says). The criticisms I have read refuting the Marshall theory make more sense to me. (google "Marhall protocol criticism" or something like that). Interesting that Elizabeth's llmd says to not supplement d. Our llmd advices us specifically to supplement d because my daughter tests low (like many lyme patients). Since we currently don't vaccinate or do flu shots, my personal strategy is to use vit d, (along with other supps, diet, sleep) to boost immune system in hopes of keeping our family healthy as possible. I guess there are opinions to the contrary, but it just doesn't seem right to me to have the body be in a state of deficient d.

For whatever it's worth, I'm certain that vaccinations were the trigger for my daughter's lyme relapse. She was treated for 2 years on abx and was symptom free (she had a lot of symptoms). She went off abx and was doing great for a long time. She then got 5yo vaccinations, and relapsed into neuro symptoms (only neuro symptoms). Which likely means we never kicked all the lyme the first time (she was too young to take cyst buster abx). But still, she had been doing fine. I don't know how to put it all together, but I'm certain that the vaccinations were the tipping point for her neuro system.

It will be interesting to see what she might have to say. I'm sure at this point she is breaking out the lyme data. (but of course there have to be subjects of the study in the pandas category that actually have other unknown infectious triggers). I have to wonder if there really is anything in trying to designate ranges for the CamK -- pandas, sc, perhaps lyme. It would seem that an elevation of CamK is an elevation, regardless of trying to assign a range to a disorder. But obviously I'm not the researcher! I also wonder what contol data exists about CamK numbers (in the general population, in people who are afflicted with other neuro/cog/psych disorders). I look forward to hearing more from her on all of this one day.

I agree about not spending the money to do it for yourself. I guess I was more just thinking out loud about the value of it for research purposes. Well, only Dr. Cunningham could answer that. I'm surprised she didn't know about congenital possibility. But I'm guessing that since then she has learned much more about lyme, as she is working with llmd's and lyme subjects have become a part of this study.

Amen to that. The what-ifs and the guilt can be a black cloud sometimes. But all you have done (all of you here!), your dedication and hard work, is paying off for your children. So take great comfort in that. Mary

I remember reading that some of you who ultimately got lyme diagnosis reported this back to Dr. Cunningham. For anyone who has not, please do. She would really want this information. To the congenital moms here: Do you think it's of any research value to see what your own CamK/antineuronal score is? Do any/all of you also have autoimmune issues? (well, that's probably a topic for a new thread).

Yes, I believe Dr. Cunningham has been explicit lately in stating that lyme and other infectious diseases can raise the CamK level. I personally wish that visitors to this forum understood that positive results to the "Cunningham Test" are not specific to strep. People need to know that they must consider any number of infectious agents may be at play -- alone or in combination (in combination more likely). And yes, my daughter recently did the Cunningham test and came in with CamK of 158. We are awaiting antineuronal report. She was on her long-term abx at the time, and was having no particular exacerbation when the blood was drawn. We were at a regularly scheduled check-up with her llmd, and he has been working with Dr. Cunningham as of late. Given her symptom history, he asked if she would participate. She was diagnosed with lyme several years ago. Definitively positive by different labs, and 7 bands positive on Igenex. She also had indeterminate bartonella results, but the assumption was that she had it and was treated along with lyme. While initially she was critically ill and had an array of physical symptoms, she ultimately had the exact symptoms that everyone here would classify as classic PANDAS. *She was tested for strep titers regularly and never once had high titers. And to my knowledge, she has never had one strep infection. I had planned on posting an update on our family soon (as more family lyme is involved), but I will say that we would consider her to be about 90%. She might consider herself 95%. And to the world, no one would suspect a thing. But yes, I feel a sense of fragility about those numbers.

Chemar, Thanks for sharing. It's heartbreaking and uplifting. I read a bit of the caringbridge site. We have something in common with their family in that we have the same llmd to thank -- I also credit him for essentially restoring my daughter's life. I wish them all the best in their recovery. Mary

Steroids suppress the immune system. Slowing down a body's immune system can then allow an active infection to grow even stronger. This is why steroids would never be recommended to anyone who has lyme or other pathogenic bacterial infection. (of course, there are many other reasons to proceed with caution using steroids regarding long term / side effects, etc.) Since this topic has been raised, I'd like to take the opportunity to again clarify a common misconception regarding lyme and steroid use. That is the idea that if a person does steroids and sees improvement, it must not be lyme. NOT TRUE. A person infected with a pathogen can absolutely see improvement initially on steroids (some do, some don't, and some have horrible reaction). But in the long run, it is absolutely detrimental to use steroids with these infections and a person will be the worse for it. PLEASE rule out lyme or other similar infections before proceeding with steroids.

Hi Julia, Glad you checked out the Oregon lyme support group. I really gave you the link more to give you the phone number to call. The woman who heads the state group has lead the group for years and years, and there are other folks who lead local chapters. She is very knowledgeable and helpful about doctors in Washington and Oregon. As for the web site, it is probably just going through another upgrade. Igenex will give you the advice as to whether you son needs to go off the abx. That is only true for certain tests, but I do not believe it is true for the basic western blot. The "healing crisis" your doctor refers to could be a herx reaction to the abx (an initial worsening of symptoms). Good luck... please keep us posted.

Hi, I posted this information to you some time back... not sure if you ever saw it. Your child's symptoms sure sound like a lyme possibility. Not sure if you know that Pacific NW (northern Cal., Oregon, Washington) are considered endemic for lyme by CDC. As you mentioned, right now you just need some doctor to sign off on the Igenex tests. Step 2, if necessary, it to find a qualified llmd. Also, as mentioned, call Igenex to get the recommended tests. Washington/pacific coast has it's own unique strains. Here are some ways to find one near you: Ilads.org -- Elizabeth mentioned this lymenet.org -- post in Flash discussions, under "searching for a doctor" Contact the Oregon Lyme support group (I believe they handle WA as well) at http://oregonlyme.org/ Best of luck.

So sorry for anyone who is having trouble dealing with the mess of lyme in their family. Hang in there! I just wanted to say that many, many states have a lyme support group that meets regularly. And in endemic areas, it seems that nearly every town has a lyme support group! To find one near you, look here: http://www.lymenet.org/SupportGroups/UnitedStates/ Please call them... that's what they are there for!

Yes, I thought it was fantastic to see this track highlighted. I'd love to be there, but $40 for the dvd sure beats airfare and hotel accommodations! As for the lda conference, I did not see where anyone on lymenet posted about dr. cunningham's session. I'm very interested in seeing that one as well. I'll post here once I see that the dvd is available. Thanks for posting all this great info. I will definitely order the cd to learn about what they talk about at the conference. So interesting that there are so many sessions about the neuropsychiatric manifestations of Lyme Disease and other tick borne illnesses. Thanks PacificMama.

I should have mentioned that all the sessions offered fall into particular specialized tracks. Much of what I listed falls into one of the tracks called "The Brain Dysfunction and Neuropsychiatric Symptoms in Tick Borne Diseases". Also, for anyone "doctor shopping", page 20 of the above linked ILADS brochure lists quite a number of doctors presenting, with their bios. They are from all over the U.S.

Most of you may know that the 2 big lyme conferences are coming up. First, the Lyme Disease Association Annual Conference is this weekend in Philadelphia. As you have probably seen posted, Madeleine Cunningham is a keynote speaker. Not sure if anyone here is attending, but I will post here if I see that someone on lymenet has posted anything. Here is a link to a description of all the sessions: http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=639:register-now-ldacolumbia-2010-scientific-conference-october-2nd-a-3rd&catid=7:conflict-report&Itemid=398 Once again, they will likely make the conference dvd available for purchase soon after. (price last year was $55). Second, the annual ILADS conference is Oct 15-17 in Jersey City. They also provide video dvd of conference for sale (last year’s price $40). This is an important conference because it is by professionals, for professionals. Researchers and medical personnel come together to share the latest information. Here is a link to the brochure of the offerings… it is 40 pages long! http://ilads.org/lyme_programs/online_conference_program_817210.pdf IMPORTANT!!! –I really want those of you who are dealing with persistent bacterial infections to see that there are a lot of medical researchers and doctors who get this, and are working toward a better understanding of these diseases, and their treatment options. Specifically as it relates to neurocognitive/psych manifestations. PLEASE FEEL HOPEFUL! (below is a sampling of ILADS sessions that would be of most interest to posters on this board. ------------------------------------------------------------------------ Sampling of sessions from ILADS Conference (there is much more!): Brief History of Lyme disease - Joseph J. Burrascano, Jr. MD This session will discuss a brief history of Lyme disease, clinical presentations of Lyme disease, clinical syndromes impacting the heart, dermatology, CNS, joints, eyes. Corresponding appropriate studies on persistence will be discussed along with transmission. There will be discussion of the thirty eight question questionnaire in clinical practice, issue with diet, vitamins and probiotics. Treatment Options - Steven Harris, MD This session will discuss a variety of treatment options including rotation of antibiotics, including IM, IV, PO with names and side effects, medication for symptom relief when antibiotics do not work. Dr. Harris will discuss the role of alternative therapies and endocrine abnormalities seen with Lyme. Basic Psychiatric Lyme - Robert C. Bransfield, MD This session will discuss psychiatric manifestations of Lyme. This includes pathophysiology, differential diagnosis and treatment. Also Dr. Bransfield will address practical suggestions for practitioners regarding psychiatric drugs for depression, anxiety, sleep, memory and wakefulness among others. Neuro I - Kenneth Liegner, MD General considerations in assessment of persons with possible Lyme borreliosis (and other borrelioses) and other transmissible co-infections which may involve the nervous system. Co-Infections - Richard I. Horowitz, MD Chronic Lyme Disease: Issues with lab testing, treatment protocols, and differential diagnosis will be discussed in the chronic resistant patient. Pediatric Lyme - Ann F. Corson, MD This session will discuss how clinical syndromes differ in children. It will offer common antibiotic regimens in children. Psychoimmunology and Tick Borne Diseases - Robert Bransfield, MD This presentation will explain the link between infection, immune reactions and neuropsychiatric symptoms in tick borne diseases Laboratory Aspects of Neuropsychiatric Disorders in Lyme and Coinfections. – Armin Schwarzbach, MD, PhD This session will discuss a standardized laboratory staging process for multiple infections with Borrelia, Chlamydia, Mycoplasma, Anaplasma, Babesia, Coxsackie-Virus by antibodies and modern T-cellular tests. Six practical case reports of patients with psychosis, dementia, depressions, confusion, panic attacks, aggressiveness among other neuropsychiatric symptoms will be presented in correlation with laboratory findings, especially multiple infections with Borrelia and Chlamydia pneumoniae. Tick Borne Diseases in Children: Neuropsychological Testing as a Tool for Diagnosis and Treatment.- Charles Ray Jones, MD and Judith G. Leventhal, PhD - Cognitive impairment, among the most frequent symptoms in children diagnosed with tick borne disease, is often a presenting symptom and a sign of brain involvement. The neuropsychological evaluation can be a useful tool for the pediatrician to document brain involvement, make treatment decisions and monitor treatment progress. When to make a referral and what information is most useful will be explored. Psychotherapy with Lyme Disease Patients: Moving Past Traditional Clinical Practice to Creative Treatment - Sandy Berenbaum, LCSW, BCD - The complexities of tick-borne disease, profoundly affects the body, mind, spirit and functioning of patients, and call on the psychotherapist to develop creative strategies to work with this patient population and their families. This presentation will explore patient empowerment, enhanced communication within and outside the family, effective strategies for maintaining essential boundaries, and building a treatment team. Brain/Neuropsychiatry Working Group: The Publishing Imperative - Cheryl Koopman, PhD Dr. Koopman will focus the group on the where, how and why of publishing on brain dysfunction and neuropsychiatric symptoms in tick borne diseases. She will discuss relevant journals, research strategies with a special focus on research with patient records, and research questions to be addressed. The group will produce a working document as a guide to developing research proposals.