PacificMama

I've been off the board lately and have not read all that's been written in this post. You are obviously going to get some different opinion on this issue. But I think it's very complicated, and much research is being done on various things that relate to some of these questions. My thoughts: As to Dr. Cunningham, I've been in touch with her periodically regarding lyme and her research. I would never attempt to speak for her on this board, but it's no secret that she is working with several prominent lyme doctors and running the same research on their patients who have the neuropsych symptoms. And of course many people here are reporting back to her that they have subsequently been diagnosed with lyme. So perhaps soon she will publish more on this topic. But really, there has been and continues to be research going on in as to these pathogens. Neuropsych symptoms (such as those classified as PANDAS here) have always been listed as possible symptoms for lyme and related pathogens. The medical literature is full of discussion, and has been for years and years. If you go to any of the lyme boards, there are all kinds of people who report these symptoms about themselves or their kids. Rarely do they mention PANDAS. They only know these symptoms as just something that happens with lyme. With treatment, the symptoms resolve. I personally would not say a person is "predisposed" to lyme per se. But why is it that while there may be great numbers of people exposed to these pathogens, only some present with symptoms? Or maybe it's years down the line that the symptoms emerge into illness? Autoimmunity and other hereditary factors may play a role (lots of research now on the role of autoimmunity and lyme). But certainly it seems reasonable to say that there is some reason one person's immune system handles the pathogen, and another person's doesn't. I know lots of people here say "PANDAS and Lyme". But I think if you've got a confirmed diagnosis of one of these pathogens (borrelia, bartonella, myco, babesia, RMSF, Erlichia, etc), then that is your true problem. And all these other layers pile on top of that. I think it is Dr. Harris' slide that shows lyme as the hub, and all the other spokes radiating away (viruses, other bacterial infections, allergies, mold, yeast, etc). And as has been pointed out, llmd's are now referring to things as Multiple Infection syndrome. So yes, it's complicated. But unless, and until, the underlying pathogenic infection is addressed there will not be permanent or lasting recovery. I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question. Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.

KMom, Regarding the T & A for tomorrow, make a separate post so more people see your question. Why did Dr. B say to do it? Because he has high titers? I think if there is no urgency, and it is easy enough to postpone and have done if you still feel it is necessary after more tests come back and perhaps you get more advice from this LLMD or another -- then perhaps that is the way to go. (but I have NO experience with this as no doctor has ever recommended this procedure regarding my children).

Hi Cobbie, I've not been able to post much lately, but I saw your update. I hope you take some comfort in the knowledge you now have. And we look forward to hearing about your son's progress! I'm impressed with the comprehensive testing that was done. It really gives you a good picture of what's happening. Best wishes! Mary

Hi Dawn, Glad you are seeing improvement in your son, and hope that continues upward and onward for you. And good luck with the testing on the rest of your family. It may feel overwhelming to be considering it on a family level, but it's better to know than not know. Mary

Hi KMom, I've been completely busy with a project and not able to post much lately, but was glad to see your update. I don't know if you've read some of the Bartonella postings here, but I did want to say that it is much more common that people would imagine. I have read that some doctors/researchers think it is much, much more common than lyme. There are several different strains, and they may present a bit differently (They do not all give the "stretch mark" rashes that are sometimes described... I think that is particular to one of the main strains). Yes, the neuropsych symptoms are typical to Bart. Bartonella is transmitted via ticks, fleas, mosquitoes, head lice, biting flies, cat/dog scratches, and cat/dog bites. I have read that as high as 50% of cats carry the bartonella infection at one time or another in their life. I have also read that you can get it at some stages just from their saliva or skin. And Bartonella is also transmitted congenitally in utero, from mother to baby. Curious... did he prescribe or make any abx changes? Or are you waiting on further results? Mary

Thank you for posting this link! I was waiting for him to post his update, and then just forgot about checking back. Elizabeth or Wendy, maybe you want to post this as a separate topic heading so all can see? (or was that done and I missed it?). thanks again.

Yes, my kids always have the opposite intended reaction to these types of drugs. I've always been told by doctors this is not uncommon with some kids (and adults).

Hi Melinda, Sorry to hear about the backslide. I have no experience with IVIG... we never did that with my oldest daughter during lyme treatment (and she is now A-OK, symptom free). I'm curious if you did the IVIG as you already had a plan in place to do it before you started on lyme treatment? I do know it is sometimes used for lyme and co, but I think it's more of an "end of the line" type of thing. When abx treatments have exhausted and pathogens are eradicated. But I did want to say hang in there. You did at least get to see a glimpse of your daughter and her improvement with the lyme/co protocol. You will see that again once things settle down. I think you are wise to hold off on adding the new abx until things settle. Also, you posted elsewhere about your daughter's improvements in gut symptoms from the lyme treatment. Can you post about that when you get a chance? We have yet to start my youngest daughter's treatment as we are waiting on our appointment (she was the one just diagnosed). Gut problems have always been her prominent symptom -- chronic pain, acid reflux, bowel issues). I know this is very common with these infections for them to harbor in the gut, and so I hope she will see some immediate relief once we get her on the right abx. Be well. Mary

Hi Kmom, Glad you found the materials helpful. Also, if you look above in the Helpful Threads folder, there is another article. And info on finding LLMD. Yes, it is usually requested to not post full doctor names on lyme web sites. It's probably OK here to post the name or initial / geographic region and ask for opinions via PM. However, I'm not sure if you would find anyone here on this board. You can always post on the "looking for a doctor" board on lymenet, or call PA lyme group and ask for referrals. But for now, there's every reason you should keep this appointment with the LLMD as is. You're lucky to be going so soon, and the price is quite reasonable. At least you will likely get the proper tests run, and get a good opinion on things. In the meantime, if you get other good referrals, you could put yourself on the wait list in case you ever want to switch. And yes, I'm sure the LLMD will be interested in the myco tests. I think most people with lyme, and most LLMD's (but not all certainly) would advise to avoid the flu shot. It certainly can be a trigger to symptom onset. But don't dwell too much on it. Just keep moving forward searching for your answers. Mary

Hi Wendy, It's a good thing you live so close to your doctor! I'm sure the office is beginning to feel like a second home. Are you saying that you are going to be taking Tindamax every day of the week for six weeks? Also, did you ever get the ILADS presentation on cytokines and herxheimer? If so, could you post a short summary. If not, maybe I'll order it. Good luck with your abx changes! Mary

Hi Sheila, Thanks so much for all you do to provide this forum to people. It has saved a lot of lives! I will definitely make a contribution. I think it's OK for you to hold a "pledge drive" a couple/few times a year to remind people to donate if they can. Lots of people don't know, and there are always new people coming in. Another idea is to set up an account with www.igive.com. Not sure if you are familiar, but organizations can set up an account here. Web searchers and shoppers can then go through the Latitudes account to search the web, and shop at over 800 stores. For each search, and for each purchase, money is donated to Latitudes. With holiday shopping starting up, it could bring in a fair amount of money if people here used it. Here's a little blurb: Searching or Shopping means a donation. It's just that free and easy. A penny or more per search, a $5 bonus for your first purchase and up to 26% of your purchases at over 730 stores like Amazon, eBay, Travelocity, Home Depot, Staples, and many, many more. Plus you SAVE money with exclusive coupons/free shipping deals. Over 800 stores participate in our donation program, including Amazon.com, eBay, Staples, JCPenney, Barnes & Noble, Overstock.com, drugstore.com, Office Depot, QVC, Expedia, Home Depot, HSN, Best Buy, Drs. Foster & Smith, Gap, Buy.com, & NORDSTROM.

Hi Susan, My daughter never took flagyl, but she did take tindamax as her cyst buster (2 days per week). These cyst busters definitely pack a punch for most people. At best, you could expect to feel extra fatigued. At worst, you would feel an exacerbation of symptoms, or new symptoms. And perhaps more "raw" feeling (sensitive, teary). Plan to get extra rest as best you can, and DETOX, DETOX, DETOX! I think that makes all the difference. It will get better and better each time. (and it may not happen the first weekend at all, but then kick in the second time). If you need more info on Flagyl, you could always try lymenet, where you would see about 8 billion posts on it. Good luck... just remember that it will all be worth it. Mary

I saw these awesome charts a while ago and forgot to post links to them! I was just on the Pennsylvania lyme site and saw them again. Not sure how current. Take a look: http://www.lymepa.org/Antibiotics_spreadsheet_2005-0906.pdf http://www.lymepa.org/Antibiotics_spreadsheet_2004-1215.pdf

Hi KMom, I think given that you live in the #1 tick borne disease state, these infections are something you should certainly look into. Your children present with symptoms that fall under the symptom list of these diseases, and the Igenex tests do indicate that a clinical evaluation should certainly be done. No matter what the tests, lyme is always a clinical diagnosis. There are so many strains of bacteria, and so many different co-infection possibilities -- combine that with insensitive testing and lots of diagnoses get missed. I'm so glad to hear that you will have the children evaluated by an LLMD. They will take a thorough history, do a thorough exam, and evaluate the symptoms. For sure you seem to know that you are dealing with some type of infectious problem as you see the effects of going on and off of abx. Perhaps you are already doing this, but keeping a detailed log of the symptoms, and what happens when you pursue various treatments, will be helpful in evaluating things. It is sadly common to see whole families impacted. In the meantime, the best "TBD 101" presentation I can recommend is the recent presentation by Dr. Corson at the ILADS conference on pediatric tick borne diseases. She practices in PA, and I think you would find it very educational -- it speaks a lot about all of these infections, and how they layer, and speaks specifically to neuropsych manifestations. It's $20 for the DVD. http://ilads.org/store/store_lyme_video.html Here are 2 other slide show presentations by her, the first is her general presentation on pediatric lyme, and the second is specifically Neuropsych manifestations of tick borne diseases -- and it seems to be tailored specifically to the infections in PA. http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf http://www.lymedisease.org/resources/children_pdf/CorsonPsychiatryGrandRounds.pdf Finally, here is the link to Pennsylvania lyme group, which is quite awesome: http://www.lymepa.org/index.html Good luck and keep us posted. Mary

Glad you are feeling better! I can't comment on the flagyl, but I'm sure someone will chime in here. Mary

Hi JayJay, I agree... these results are not questionable. I hope that you will go forward with the treatment recommended by the LLMD. This will after all be the ultimate test -- whether your son responds favorably to these abx protocols over time, and the improvement holds. It's good you know about the bartonella too. (lots of people here dealing with bart). Proper treatment will make all the difference in the world. Also, in case you were not aware, the Cunningham test is not specific to strep/PANDAS (it's not specific to any infection). Dr. Cunningham has stated that lyme and other infections can raise the camK, and autoantibodies, just as strep does. She now has lots of lyme patients participating in her research. [i know she would want you to report back to her about your son's positive lyme test so she can ammend his test file] Best of luck... keep us posted! Mary

Thanks again all for the kind words. It seems that so many of us here are finding ourselves in the same boat -- parents sick along with their children. But as has been said, we are the fortunate ones as we have identified the problems and we're getting treatment. Patty, your experiences sound eerily familiar. I guess when the symptoms are a slow creep, you chalk it up to so many other things. I am motivated by your return to good health, and look forward to getting there myself. Who knows, maybe there will be a 5 or 10k run in next year's summer plans! Mary

Hi Jodie, So glad you are feeling more optimistic today. And so glad to hear that will be starting treatment yourself. And on the note of optimism, I wanted to give you a link so you could read the follow-up stories to the characters in the Under Our Skin film. I don't know if you saw them at the ILADS conference (not sure if you watched any of the presentation broadcasts), but most of the characters were there attending. And most of them are doing really well! These updates were made in 2009 -- but what I saw at the conference, they were doing even better than when these were written. Especially Mandy. So please hang in there... you will change your life and the life of your family by getting this treatment. Here's the updates: (you'll have to click the "update" link for each characer). http://www.underourskin.com/film_characters.html Mary

Hi Jodie, I wish I had something magical to say that would make you feel better right now. You have so many years of experiences that have brought you to this point: your childhood, your adult experiences trying to deal with the issues, and of course the time you've spent pursuing answers to your son's illness. And now you've arrived at a point where you are finding answers.. putting puzzle pieces together. And while that is invigorating, it brings all the hurt and anger to the surface too. It is just a whole lot to deal with all at once. You will feel better in the coming days once this settles in a bit for you. I can't even begin to know the experiences of your childhood. But in general, one of the amazing things about becoming a parent ourselves is that we get a "do-over" of sorts for some of the wrongs we may have suffered ourselves as kids. That is, we get to do for our kids that which was not done for us. It's not quite the same thing as fixing the lost childhood you describe. But you are making sure your son does not have a lost childhood, and that is a wonderful and beautiful thing. But still, at the end of the day, you are sick too. I hope there is some way that you can begin some treatment for yourself right away. Maybe you just can't do it all right now, but is there some way you and Dr. C can come up with a program where you start down that road? Bartonella is very treatable. You will feel better! I'll put another plug in here for the local support groups. Maybe give them a call if you need to? They are certainly full of similar folks coping with the travails of these infections... many of them treating the whole family as lots are here too. But as suggested, please make sure you are talking to somebody in your life about how you feel. http://www.lymenet.org/SupportGroups/UnitedStates/ Be well, and hang in there. Mary

Hi Jodie, I'm so glad to see you post about your visit with Dr. C! Thank you for all the valuable information you've shared. I have more to say/ask, but I am off now for a busy Saturday -- so I will post again later. Mary

Cobbie: thank you for the nice words. I look forward to hearing how things continue to progress for your son. Wendy: !!! Check, check, check please. Yes, the new normal. Hang in there. You are in the worst part right now, and it does not get worse. It just gets better, and occassionally maddening and frustrating. But I hope you feel like I do, also excited at the possibility that not only are my kids not going to be chronically ill for the rest of their lives. But that I am going to feel better myself. Because I had honestly thought that this was aging, and this is just how things were going to be. As far as my youngest daughter, I sincerely thought she had inherited immune dysfunction from me, and that she would be battling allergies and gut issues forever. So the idea that it is infectious disease for her also, that she can recover from, is wonderful. So yes, there will be a party. Finally, I will tell you all a story. Back several years ago when my oldest daughter was critically ill with lyme, I made contact with the state lyme support person. Her own daughter had been critically ill several years before that, and they were told the girl had less than a year to live. They actually sold their house and moved to a location that the daughter wanted to spend time in as a "last wish" sort of thing. The doctors refused to treat for lyme, and said it was a X degenerative disease. Due to the kindness and intervention from others, the woman and daughter eventually found their to the good pediatric lyme doctor. Fast forward to today, the girl is healthy and all grown up, married and just had a child of her own a few months ago. So back a few years ago when I made contact with her searching for help, she gave me her appointment slot for the good pediatric lyme doctor set for the following week. Instead of a 4 month wait for my critically ill daughter, I was able to take her immediately and begin treatment that changed her life. I will never forget the kindness of this woman -- she had never even met me, just spoke to me on the phone. I always keep that experience at the forefront of my mind -- pay it forward as they say. And I know that is the intention of so many people on this board as well. Mary

The mag supplement that we always have used is Natural Vitality Kids Calm. However, it's recently been discontinued. We switched a bit ago to using Natural Vitality Calm Magnesium with Calcium. It's a powder mix, and I adjust dosage accordingly. The Kid's Calm recommendations were for 120mg mag for ages 4 to 8, and 240mg for ages 9 to 13. So you could use those recs when mixing the adult powder. Start with 1/2 rec dosage, and work up. http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Natural-Calm-Plus-Calcium-16-oz-454-g/7863?at=0 We also now use their new Kids Calm Multi; it's a liquid multi vit/min mix that needs to be refrigerated. It's awesome! And does contain extra mag/cal too. My husband and I use the adult multi version and love it as well. http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Kids-Natural-Calm-Multi-Organic-Orange-Splash-Flavor-30-fl-oz-887-ml/22855?at=0 Lyme eats magnesium. It's really key to supplement with this... magnesium regulates so many functions in the body. Try to take away from abx. A dose before bed helps with sleeping. **Yes, link to recommended books is a good idea. I will post something above, and then notify everyone to post their books.

EVALUATING A CHILD FOR TICK BORNE DISEASES Please see this thread for a link to an excellent article by a pediatric specialist which discusses how a doctor might make a clinical diagnosis for lyme based on symptoms and lab work: http://www.latitudes.org/forums/index.php?showtopic=10421

HOW TO FIND A LLMD -- a/k/a a lyme literate medical doctor Lyme and other tick borne diseases are usually a clinical diagnosis -- that is, the diagnosis is not reliant on blood tests because the current blood tests are often inconclusive. Therefore, it's extremely important to find a doctor who is very skilled and experienced in treating tbd's (tick borne diseases). These initial exams are very thorough, often 2-4 hours in lenghth. They include a full review of patient history, lab work, and an extremely extenisve physical exam. These doctors are often called LLMD's (lyme literate medical doctors). They follow the treatment protocol as outlined by ILADS -- International Lyme and Associated Diseases Society. ***These doctors are VERY SKILLED at treating the multi-infectious patient. Rarely is a patient dealing with simply one infection. Often, there are multiple infections transmitted by ticks. But also, once the immune system is compromised by the initial infection, the patient often becomes susceptible to additional viral and bacterial infections. These doctors know how to peel back the layers of the onion in giving complete treatment. They know the best combination of abx to treat these infections, along with non-abx treatment to add to the mix (supps, naturopathic, etc). Resources for finding a doctor: 1. Contact ILADS.org and ask for listing of doctors in your area. http://ilads.org/ 2. Go to www.lymnet.org Flash Discussions / Seeking a Doctor Post a message titled such as "need llmd in Texas". You will receive personal message with names of doctors. This can be very helpful, as they will sometimes give you more detailed information, or have personal insights to offer about the docs. http://flash.lymenet.../ultimatebb.php 3. Contact the lyme support organization for your state / county / town. They can help you find doctors in your area. http://www.lymenet.org/SupportGroups/

Thanks for the supportive words. Michael: Yes, disease can be ever-morphing. And certainly the fear is that it unravels. I think I was thrown off in part because the experience of lyme for my two daughters is so different. Another piece of the puzzle. Elizabeth: Thank you. It has been so wonderful to continue to hear about the progress in your family! And in the end we just have to take satisfaction in the healing, even if we are left to wonder about the start point. Melinda: thank you too. I'm glad to hear about your daughter's progress. I hoped it would not be a downer for people to hear that it took my daughter 2 years until symptom free. First, she was very little and very sick for a long time before beginning treatment. She truly was a case where the lyme seemed to infiltrate her on a multi-systemic level. She had great progress right out of the gate -- night sweats gone; ocd behaviors gone; facial palsy gone; immediate improvement in other joint pain complaints. The other symptoms herxed and cycled, with a couple of change-ups in abx when relapse happened. (one of the most frustrating things is trying to differentiate a cyclical flare from a true relapse that needs addressing. Your doctor will help! Detox will alleviate a flare, and you'll know it was a flare). However, when I look back and read my daily journal, I honestly think that it took this long in part because for over a year all I did was give the abx, along with a mediocre probiotic. I just didn't know what you all already know: quality probiotic; quality supplements and detox are key! Once I started doing these in earnest, she seriously took off and was symptom free within months (magnesium and probiotic making the most difference). The mistake I made was stopping abx too soon, and also her doctor believed at the time that she was too young for a cyst buster (which I believe the thinking has changed on this). So cyst form became active again after immunizations. Hope this helps!