PacificMama

I give her 1 capsule per day. They have at least 30 billion CFU. This worked wonders for her. The company is really familiar with lyme, and I have corresponded with them over time. I think Wendy gives higher CFU -- she could tell you more. But something about Theralac's formula really works for the lyme folks. Also, the second most important supp I ever gave my daughter was Kid's Calm magnesium powder. It was like a miracle supp, and helped so much with the leg pains/restless leg, nighttime anxiety, etc. Supplementing with magnesium is HUGE with lyme. Mary Mary- how many daily capsules do you give your daughter? Melinda

Yes, absolutely with the history you describe for yourself and your family, you should certainly have your child evaluated by a knowledgeable doctor and tested via Igenex labs for lyme and other tick born infections. Please see the link in this forum for finding a lyme doctor. Mary

Yikes, that's a lot just for probiotics (especially when there are so many other supps to add in). However, my caveat is definitely do not go cheap on the probiotics. We did this for a while when my daughter fist started abx. However, we eventually switched to Theralac (NOT Threelac) -- Theralac is recommended quite a bit on the lyme boards. It made a HUGE difference in her turning the corner. We buy half case at a time -- 6 bottles -- for $210. There are 30 capsule per bottle (1 month for daily use). http://theralac.com/Default.aspx They have a new children's version -- which is essentially just the powder if your child is not old enough to swallow capsule. Perhaps you will get other recommendations too. Mary

Hi, I just wanted to put out a mention of this book for any who are interested. Im currently making my way through "The Lyme Diet: Nutritional Strategies for Healing From Lyme Disease". It's a new book by Nicola McFadzean shes an ND in San Diego. Shes ILADS trained, and Ive seen her mentioned as a speaker at some lyme conferences. Most recently at the Lyme Induced Autism Conference. Here is the link to her web site, where you can read an excerpt. http://restormedicine.com/category/lyme-disease/lyme-diet-book/ And here is a link to another site that lists the table of contents, and some other excerpts. http://www.lymebook.com/lyme-diet-book-nicola-mcfadzean-nd Its also available through Amazon. Part of excerpt: Navigating the most appropriate diet for a Lyme disease patient can be difficult, but good nutrition is such a crucial part of any treatment regimen that it is well worth addressing. Food is incredibly important. It sustains us, nourishes us, and can heal us. Food is medicine. It should be one of the most important factors in your treatment program. In fact, you should begin thinking of every single thing you put in your mouth as medicine. Would you take an antibiotic or drug if you knew it was toxic, and you also knew it would have no beneficial effect on your Lyme disease? Probably not. So why eat low nutritional value, toxic foods that have the potential to harm you and add absolutely no benefit to your body except for additional calories?

Up...

See this thread to find a doctor: http://www.latitudes.org/forums/index.php?showtopic=10543

The standard Western Blot panel run through Igenex labs is IGG and IGM. It is $260 for these two tests. You can also do PCR by urine (dna). For western blot, it does not matter that you’ve done IVIG, or if you are on abx. For PCR, it is usually required that the person be off abx for a certain amount of time. It breaks my heart to see that you would almost have to beg for abx from your ped, when it is obvious that your daughter is abx responsive. I don’t know what infection(s) she has, but it seems obvious that she has something bacterial in nature when she clearly responds to abx treatment. I am just going to once again put out the word that you do NOT have to have lyme to go see a llmd. They are just regular doctors after all. They are simply doctors who are skilled in treating tick borne infections, and all the infections that sometimes go with them. Lots of times there is no actual borrelia infection. These docs are sympathetic… you do not have to beg for abx! They will run a panel of lab work based on your daughter’s history. They will do a thorough exam. They will listen to what YOU have to say about your daughter. These are doctors who will treat for an infection if that’s what they believe your daughter has. I also want to add that probably every llmd treats children who have been given an autism diagnosis. Most of the speakers at the ILADS conference last week talked about infectious based autism. So they treat it based on that understanding. And I have heard wonderful healing stories. I believe that many of them would say that they believe there is an infectious component behind all autism diagnoses. Here is the link to Arizona lyme support association – they can help you find a doctor: http://www.azlyme.org/ Also, see this link on finding a doctor. http://www.latitudes.org/forums/index.php?showtopic=10543 Mary

I'm understanding that you are looking for a psych? Not an MD? In any event, you can contact ILADS and ask for referals of docs who do neuropsych evaluations. In fact, the current president of ILADS in a neuropsychologist. But also, LLMD's are very familiar with neuropsych manifestations of lyme disease, as it is just another symptom to them. So if these people have some sort of infectious pathogen causing their symptoms, an LLMD is a good person to see for eval and testing. It's quite thorough.

Jen, Since you have a history of tick attachment, and a history of your children in infectious tick environment, you should certainly go ahead and have a doctor evaluate for this. You could just start with you and your daughter. I know you are pregnant now, so I'm not sure about your ability to do this. Have you yet identified where an LLMD might be for you? I know it will involve travel since you are in Texas. There is a great llmd in Missouri that I know someone from Texas (on the lyme boards) traveled to -- he treats kids and adults. However, perhaps a good first step is to contact your state lyme group (see the links in the Finding a Doc posting) to just at least find a local doc who will run the igenex panel. Or do you already have a doc who will do that?. There seem to be a whole lot of Texans on the Pandas/lyme boards!

Hi Melinda, The good news is that you now have identified the enemy! For your daughter to turn up with all this conclusive lab work will help the docs keep you going on the correct protocol. As Elizabeth said, to start peeling back the layers. And as Wendy said too, this is why your poor daughter has been so sick. I do believe that Dr. Corson mentioned in her presentation last week about RMSF, and it's prevalence in Pennsylvania. I don't remember the details. It's wonderful that you are already under care, but perhaps it's worth getting on her waiting list since she is closer to you? Your daughter (like so many others) is really a poster child for the importance of getting the full range of testing done along with a proper evaluation. One tick bite can really pack a whallop. And thank you for posting the lab names! It's really important for people to see that the testing extends beyond Igenex / Borrelia. We look forward to your update. Mary

Hi Emerson, Perhaps you will someone who has experience here on this board, but I can tell you that getting IEP plans for lyme is done all the time. Perhaps not where you are, though. Here is a link to lots of support materials for lyme in the schools. http://www.lymediseaseassociation.org/index.php?option=com_content&view=category&id=12&Itemid=147 You can always post on lymenet, as there are lots of experienced parents there who would have done this and can walk you through the process. Regarding coinfections, testing is typically done at a variety of labs. The llmd's know best who they like to use for what. And this may be different in different parts of the country. Since you are just going to use your general physician, you again might make a post on lymenet looking for a fellow Texan to perhaps offer an opinion. And hopefully someone who has recently run the co tests here will chime in with at least some general suggestions, and lab choices. I know that during the ILADS presentations that were broadcast last week, some of the docs put their typical tests and lab reccomendations out there.

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.org/ubb/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/

Up for newcomers...

Hi Jen, Of course your daughter's fatigue can be caused by many things. But the fact that you feel all of your children are possibly ill indicates that something further needs to be looked into. You mention that you have been bitten by ticks many times... do you feel symptomatic in any way? Where (region/state) were you when these bites took place? Where do you live now (I know these are personal questions, so of course don't answer if you'd rather not). Could you please spend a few minutes and read this article... it is about evaluating a child for tick borne diseases. It lists lots of possible symptoms. Of course, everything you have mentioned so far could fall in the symptom list (inlcuding your daughter's infection of ebv, your sons tics, etc). After reading this article (it continues on for several pages), please let us know what you think. http://www.publichealthalert.org/pdf/2009_10.pdf Mary

Lyme itself (that is specifically borrelia bacteria) would not improve by removing the other child (who you are saying is a strep carrier). However, as many here are finding, lyme and other tick borne infections can be at the root of what would be called a multi-infectious person. Once an immune system takes a hit from pathogenic infection, it often begins the process of that person taking on additional infections – bacterial, viral, yeast, mold issues, etc. – that were not part of original infectious transmission from the tick. Strep can be one of these infections that takes hold. So some people here have found that while their child had strep, and strep exposure seemed to trigger neuropsych symptoms, what they had at the root of their problem was a pathogenic infection. (None of this is novel in the lyme world by docs, patients, on the lyme board postings, etc). I’m guessing that you are saying that your PANDAS child does well when removed from her sister, not specifically when removed from your home? I only mention that as possibly mold or something in your home may be contributing to the trigger? Also worth noting, as it seems to be a source of misunderstanding, is that the Cunningham test is NOT diagnostic of strep specific PANDAS. The test is only diagnostic of high CamK II, and the presence of autoantibodies, that indicate a particular autoimmune process is occurring producing a certain symptom set. As Dr. Cunningham has noted, strep is not the only infection that will do this. Lyme can as well. What else? There is a list of people here whose child tested “positive” on this test, and ultimately tested positive to lyme as well.

Yes, you need to tell your regular ped about this... these are serious infections! What most of them (non lyme docs) are afraid of is you asking him/her to test or treat for lyme. They usually are more than relieved if you tell them that you have a specialist that will be doing the treating. Just tell them that you have a lyme specialist, but you want them to be the general ped for all other matters. And have them note the diagnosis in the file, and that your child is being treated with what particular abx. I ended up leaving our original ped during the time my daughter got diagnosed because he so botched everything (but I should have left him before that). So then when I went to find a new ped, I made an appointment to talk alone with the doctor. I explained our situation, stated what I said above, and it was fine. Good luck!

Hi Holly, I personally always tell people to call and ask Igenex, as I never want to accidentally give misinformation on this question (it's asked a lot!). The azith could have been a herx. Sorry to hear she's not doing well now. If it turns out that she does have lyme, a llmd would get her on the correct combo of abx, and children do come along quicker than you would think. It's often immediate rapid improvement, and a slow climb after that. Looks like you are in central texas, which I know has lots of ticks. Mary

Hi Holly, Igenex is the name of the lab in Palo Alto California. They are a tick borne disease specialty testing lab. They run many of the same lyme tests as other labs, but they are more extensive and more sensitive so you get better testing. They also run some tests that other labs don't. You'll need a doctor's signature for the test. You can call Igenex and have them send you the kit, and they will give you a recommendation for tests based on your situation, and your region. But the most basic western blot lyme panel is $260 (i think). It's a good place to start. http://igenex.com/Website/ Maybe unkonow to you, but Texas is thick with ticks and tick borne diseases. You can contact Texas Lyme Disease ASsociation, and they may be of help. But as Emerson has found out, getting treatment in Texas is difficult. However, there are some great lyme docs in nearby states. It's always worth traveling to get knowledgeable treatment! http://www.txlda.org/ Mary

Yes, for some it may be difficult to determine the place of exposure. Both North Carolina and California are hot spots for tick borne diseases. Maybe the llmd can help you sort it out, as there are different strains in different regions. But in the end it does not matter much, as getting treatment is the most important thing. And soon you will be doing that. Keep us posted! , Mary, We are in North Carolina, however, I believe I got Lyme in California, if I am to believe that the first time I got sick in 1996 was because of lyme. I guess I just don't know. I still can't believe how many bands are positive! And I dragged my heals getting us tested. Thank you all for your support. You know I will need you! Susan

Momcap, Let me just say that for the doctors who are out there on the front lines treating lyme, and understand lyme and other tick borne diseases, Igenex is NOT controversial. And honestly, even in the "bigger world", there really is very little controversy. There are only a couple of tick borne disease specific labs in the country, and Igenex is one of them. There are only a couple of labs that test for all bands of the lyme western blot, and Igenex is one of them. But in the end, the testing still falls short and that is why lyme is almost always a clinical diagnosis made by an experienced doctor. I believe you are from Canada? Here is a link to the Canadian Lyme Disease Foundation. It is a very extensive web site which may be of great help to you in understanding tick borne diseases in your area. http://www.canlyme.com/ Also, I just want to say that many parents here have found that one or more of these tick borne (or other vector) diseases is really at the root of their child's illness. Their child may very well have strep, or strep triggered PANDAS symptoms, but still they were not getting well. Upon further testing, combined with a visit to an experienced doctor, they have found that their child is dealing with lyme/or other similar infection. Please write back if you have more questions.

Emerson, It would be great if you could get to one of the lyme docs in a nearby state. But I know that's easier said than done for you. You probably know by now that different regions have different strains of tick borne diseases, that are unique. Texas has what has been known as STARI, but I think it may go by something else too. Yes, coinfection testing/treatment is critical. Best. Mary Thank you thank you thank you!!! & I haven't read it but I will tomorrow! It is bedtime for now. Thanks for the link! & no, I was not. Good luck getting abx in Texas, hahah. I was referred to two doctors but I'm not too entirely sure where we go from here. First thing, tests for secondary/co-infections. Already positive for IGG MycoP. No IGM run. Still have Bartonella, Babesia, Ehrlichiosis, & everything else left, hah. Testing positive on those would make abx SO easier to obtain.

Hi Emerson, Welcome to the lyme family! I know you'll find lots of support here. I don't have much time to post tonight, but wondered if you ever read the article that was posted under "Evaluating your child for lyme disease". Here: http://www.latitudes.org/forums/index.php?showtopic=10421 I know you are hardly a child! But it does talk about teens too. I wondered how much of it you felt rings true for you. Were you prescribed abx? Mary

I can't speak to elevation particularly, but yes, lyme/other will certainly affect hormone levels. As to false negative on Igenex, are you talking about western blot? or pcr? I believe in most instances you can be on abx when blood is drawn for western blot. But I believe for pcr they do want you to be off abx for a certain amount of time before doing the test. As to false negative, that is just generally the caveat with lyme testing. In that it is still a test that will produce a lot of false negatives due to insensitivity of the testing. Igenex is better than the rest. But still, a "negative" test does NOT mean that there is no lyme. That is why testing must be done in conjunction with a very thorough exam/history taking by a practitioner that knows what they are doing. hope that helps. Mary

Yowza... that's a lot of bands for you all! Well, at least it doesn't leave things in the grey zone. Glad to hear that you will be headed to the llmd soon enough. I'm sure it will be a big relief to begin treatment. I'm not sure if you've posted this info (if not, I understand), but I can't remember what part of the country you are in. OK... best. Mary

Hi Dawn, It does sound like you have been dealing with this for a long time. Well, you will have some good support here. I don't know if you've checked out the Iowa Lyme Support Org... I think they are pretty strong, and do a good newsletter, etc. Here is the link: http://www.iowalymedisease.com/ Mary