PacificMama

Hi Eljomom, No matter what type of doctor you go to, or what type of treatment you seek, you are still the one who is ultimately in control of decisions. I'm sure that just about everyone on this board has made left turns, right turns, and u-turns in their treatment plans. We are constantly assessing and learning. I truly understand your concerns, but I just would like to say again about this perception of llmd's... that no matter what you are going to get some sort of one-size-fits-all diagnosis. It couldn't be further from the truth. It is not "lyme" that they treat -- but a whole host of numerous infectious pathogens. Borrelia (over 100 unique strains is U.S. alone), Bartonella (multiple strains), Babesia (parasite), Erlichia (multiple strains); Mycoplasmas (numerous strains); Rocky Mountain spotted fever; Viral infections (hhv6; Powassan; many others). I could go on... It is an extremely complex practice. Tick borne illness is the combination of 1) a unique immune system encountering 2) a unique tick and the host of diseases they are carrying at that time. This makes for a very individualized disease presentation for each person. Consequently, for LLMD's it is never as simple as saying "you have lyme". And of the reputable llmds that are most known, none of them would ever routinely diagnose a patient with one of these diseases if they did not feel it warranted. It might seem "gray" on this board. But sincerely, these diseases have been being studied and reported in the medical literature for over a century. There is a big old world of tick borne disease research out there. The testing is not always able to pick up the positives (depending on the labs), but there are certainly many levels of evaluation to determine if a diagnosis is warranted. And for anyone who starts treatment, they base their next steps on whether they are seeing results. (Whether you decide to go to LLMD is obviously something you will decide. But as others have mentioned, your Igenex test indicated that there is borrelia exposure).

Hi Momcap, I was not necessarily referring to this study re the rise and fall of camk, but more her current work. Likely the findings will be replicated. I was somewhat referring informally to the findings of people here, and wondering if there was some sort of tracking. I do not know the specifics of tracking Dr. C is doing currently. (but as an aside, my daughter was nearly symptom free at the time of her draw, and still she had the high numbers). Regarding those studies you cited and lyme, here is a snippet of what Dr. C passed along to me at some point: You might assume that in the Lyme sequelae you may expect similar to the cases in these two papers. Of course, her research now includes testing lyme patients to verify the replication. And as to the antineuronals, I hope others will verify that these are not specific to strep (although those earlier studies did indeed study strep subjects). Page 6, 2nd paragraph, 2nd sentence: "...antibodies from acute PANDAS sera taken in the symptomatic phase of disease activated CaM kinase II in human neuroblastoma cells. Matched convalescent sera, obtained in the absense of symptoms, did not activate CaM kinase II in comparison to acute sera." I have been reading this study over and over and over again. DS7 has confirmed strep issues (high ASOs), but I also suspect lyme. I'm trying to get my head around what all of this means. I know that other things can cause high CaM K, but I thought the 4 specific anti-neuronal antibodies being studied here are specific to strep. Can someone correct me if I'm wrong? In the study they are referred to as "antibodies directed against an epitope of the group A carbohydrate of Streptococcus pyogenes", and later "antibodies against the streptococcal associated epitope G1cNAc". Does anyone have a study or quote confirming that other infections can lead to production of these particular antibodies?

Hi Jodie, Sorry... can't help on your question of that particular detox combo. I just wanted to ask if you think the increase to BID of zith is too much? and causing way too much die-off and herx. My daughter would not have been able to tolerate BID (and kept to 250 mg SID throughout). Hope things get better soon. Mary

Smarty, I'm sure I can't explain exactly why rashes occur. But llmd's will tell you that TBIs can cause all manner of skin rashes, and skin problems. I can only imagine it's because the skin is a very important part of our immune system, and it is a body's largest organ. It would be likewise detrimentally affected the same as other systems in our body. And unlike the inside of our body, we can actually see our skin -- offering us a glimpse as to problems with our immune system. No, I do not think that there can be any correlation made between size, severity, type of rash, etc -- and the severity of the illness. Skin problems/ rashes come and go, may constantly change. Or may never appear at all. NO, there is also no correlation between the place of bite, and the site of rashes (although there may indeed be a mark/rash at the site of the bite). As to Bartonella, stretch mark rashes are a telltale sign. But again, you do not have to have stretch mark rashes to have bart.

just curious -- have you done the cunningham now that she is symptom free? No, we do not have any plans to retest (unless we were asked to as part of the study or something). Often with lyme, the resolution of the infections brings about a resolution of any autimmune problems it sets off. Perhaps for some that does not happen, and so some people with lyme do seek IVIG. LOTS of research in the lyme world going on regarding autoimmune issues. Someone else would have to verify, but I'm not sure that there are any publishings re the Cunningham study on the tracking of this sort of data (the rise and fall of camK/ antineuronals as it relates to symptom resolution or exacerbation?). I hope one day this study has more practical value. That is, a person could take their results into a doctor and have a corresponding plan. But right now, all you get is verification that you may have an autoimmune issue going on. IVIG/PEX might be the fix for that. But because the results of the "test" do not tell you what infection caused this onset, it still does not address the issue that there may indeed be serious infections that need to be evaluated for and treated. And maybe treating these infections would correct the autoimmune neuropsych issues -- in addition to, or in place of, IVIG.

Gosh... I think I will defer to previous explanations or others to exlain the mechanism of why/how the CamK rises. I just wanted to point out that there are a different number of bacteria/viruses that can activate this process. The process which activates the antineuronal antibodes, and the rise in Cam K. People might be under the impression that this is somehow a test that verifies a strep situation, and that's not the case. You would have to do seperate titer testing and evaluation for that. For example, my daughter who dealt with lyme, took the Cunningham "test" at the request of her llmd who is working with Dr. Cunningham. She had high camk (163 I think), and high antineuronal antibodies for 2 of 4. No strep ever -- and no presence of strep titers -- checked regularly. (She is now symptom-free). Others could better say the various combos that show up here -- that is, does everyone with high camk also have high antineuronals? I do not think that is the case for all. Some just have high CamK. Also, various combos of the antineuronals show up given the 4 possibilites. Hope that helps... and I haven't confused the discussion. Mary

For newcomers, it should be clarified that the Cunningham “test” is NOT specific to any one infection. Dr. Cunningham has stated that there are a number of bacterial / viral infections that will cause the CamK to rise, as well as the presence of the anti-neuronal antibodies. These infections include strep, lyme, and others. The “test” simply indicates that this autoimmune process is occurring. NOT which infection is causing it.

WD, Please do not overlook the positive Erlichia test. Erlichia can be very serious, and needs to be treated with the specific meds that will address this infection. It is inconceivable to get a false positive Erlichia test. And the fact that you have a positive erlichia, along with a positive IGM on lyme makes a tick borne infection problem more probable. Yes, band 31 may cross react. So a LLMD would rule that out. But your son is also positive on a borrelia specific band that does not cross react. But really, ONLY AN EXPERIENCED DOCTOR should tell you what is likely happening here. For most people who have changed course from PANDAS treatment to lyme treatment – it is simply a matter of changing antibiotic protocols. The lyme board is full of people who have seen dramatic improvement in their children since changing course. You’ve heard it all before… for some there is more than strep. As Philamom said, of course a doctor would take into consideration the improvements made on the augemetin. These are very serious infections (erlichia and lyme, others). And ignoring them comes with a great deal of risk. I do not know what the long term consequences on the body and brain when one has strep/PANDAS. But the long term consequences for having untreated tick borne infections can be dire. (WD, I do know that you understand this. But it needs to be said here).

Hi Worried Dad, I'll chime in... but I'm sure other lyme folks will offer advice too. The lyme IGM is definitely positive. And the fact that you have positive Erlichia is pretty telling too (as they would often be found together). Here is a link to more info on Erlichia: http://www.lymedisease.org/lyme101/coinfections/ehrlichia.html Not sure if your original doctor was truly an ILADS treating LLMD, or just an ifectious disease specialist? But no matter, I would just have to say that there is no typical way an tick borne disease comes on. The classic way you read about lyme is that symptoms manifest following what seems like a bad case of the flu. But it doesn't always have to be that way. There really is no such thing as borderline results per se. If you see some sort of reactivity in the western blot, that's all you need to start considering things. That is, more bands positive does NOT mean more, or sicker, lyme. (and I'm using lyme to really mean all tick borne diseases). I would advise you to find your way to a LLMD as soon as possible. They will help you sort through things, and you can take it from there. And you can take comfort that you will be prescribed abx for as long as your son is improving, and until he is symptom free. I'm sure you've read enough here to know that the key is the combination, and rotation, of abx that does the trick. So yes, your augmentin may have been helping, but it's not going to get you to the finish line. Strep problems can most certainly be chronic when there is other underlying infection. There are a whole list of people on the lyme forum to attest to that. I think you are in Michigan? There is an LLMD in Saginaw that treats kids. You could contact the Michigan Lyme group for contact info. Also, another in Chicago area. Aand other excellent docs within driving distance. See the helpful links folder in lyme forum for how to find llmd. Honestly, while it is not a diagnosis you want, I always tell people to be thankful for the positive test results (especially on the coinfections). Because when you know the enemy, you know how to treat it. Best of luck. Mary

I'd like to comment on this, because I do not understand where this idea comes from. No doctor "forces" anyone into a lyme diagnosis. Why would they do that? LLMD's are watched like a hawk by their state medical boards, and I can tell you that no doctor is going to offer a lyme diagnosis without good reason to think so. Yes, it's a clinical diagnosis (just like many diseases, including PANDAS). Yes, it can only be the neuropsych symptoms, without the other. Every individual is unique, and every disease presentation is unique. The treatment is not heavy duty. It is most often abx, started in a slow and methodical way. The doctors quickly judge the next steps based on the reaction to abx -- maybe a herx (initial flaring of symptoms) followed by improvement. If you do not see improvedment, diagnoses are reasessed. No one is forced into anything. If advised, you could do a short trial of abx and see what you think. There's really no down side to that. Mary

Cobbie, That's wonderful news... just in time for the holidays! So glad to hear of your son's progress. And yes, it's nice to hear the success stories about the other kids who are doing great after their treatment. Mary

Dawn, Glad to hear that you are putting the pieces together -- I'm sure it answers lots of questions for you regarding your family's health. It may be a bumpy journey, but at least you are all in it together! And headed in the right direction. Mary

Looks like several new lyme inquiries lately... so I'm bumping this up for newcomers. For anyone who is trying to sort through a possible lyme diagnosis, I can not strongly enough recommend that you seek the qualified opinion of a LLMD (a doctor who follows ILADS protocols for diagnosing and treatment). These doctors will NOT automatically give you a lyme diagnosis if they do not think that is the case. The primary reason for seeing one of these doctors is that they are very, very skilled in understanding the MANY varied infectious pathogens that can cause these symptoms. And perhaps most importantly, the fact that many times there are multiple infections present (not just borrelia/lyme). They, better than any other doctors, know the correct combination and rotation of abx to slowly erradicate these infections (along with possible other non-abx treatments). See also the pinned "helpful threads" folder above. Best to all, Mary

Are you saying this is an extreme herx, or just a regular cyclical flare of symptoms? Normally you would stay on meds through a symptom flare. Is stopping for a set number of days? Dr. J would never have had us stop any abx unless the herx symptoms were not tolerable for my daughter. Hard to say as I don't know how bad it is for your daughter, or the impression Dr. J's office has of the situation. Hope she feels better soon.

Hi All, Just dropping in to make a post about a very interesting upcoming conference which came in one of my medical newsletter emails. (btw, all is pretty well here – I’ve just been super busy. Older daughter doing great, younger daughter about to begin treatment, and me… I am waiting on my appointment to discuss starting treatment!). Anyway, this is the 2011 Physicians Roundtable “created as a learning tool where doctors, researchers, and other health care professionals could come together to discuss technology, protocols, and cases in a non-invasive, Gordon-style fashion. This elite group of professionals brings cutting edge information — the round table discussion sessions have produced research projects and have cemented professional relationships”. And this year’s theme explores the association between infections and chronic illness, and will focus on lyme disease. Description:The initiative is to explore the association between infections and chronic illnesses, using common denominators. This year’s conference is a well-balanced gathering of experts that research and work with commonalities observed in chronic illnesses such as CFS, MS, ALS, FM, etc. Our presenters will deliver scientific, evidenced-based research combined with practical clinical experience for a better understanding of these common denominators. The physicians attending the round table discussions will be able to interact with Gordon-style freedom and provide missing pieces. It is our hope that this exchange of information will lead to discoveries of new treatments and cures. This year’s emphases are Lyme and Morgellons diseases, as the Center for Disease Control has ongoing studies in these areas, and physicians are seeing more patients with these conditions in their practices. As in other chronic illnesses, we anticipate the discovery of common denominators in these as well. What I love about this is that it brings together top physicians from various fields, and has them hash through what they are finding to be the common denominators to these diseases. Here is a link with more info, and some of the bios. Scan through the bios – very interesting. (Leo Shea, neuropsychologist and president of ILADS will be there – lots of others) http://lymebook.com/vogan-blog/?p=22 Here is a link to full conference description, and all the bios of participants: http://integrativemedicinepractitioners.org/535/text/1042/files/2011-Physicians-Round-Table.pdf

Love what Susan said... "hope to cure everything with lyme treatment!". I'm not sure I know what "our story" is. I thought my oldest daughter was a stand-alone case of lyme. But now, my youngest daughter, with very differnt symptoms, has also tested positive and will begin treatment soon. Which led me to test myself via Igenex -- and I came up with results that while not officially positive, do indicate that I likely have lyme (other stuff) as well. I am waiting on another appointment to discuss treatment. I was diagnosed with hashimoto's disease (autoimmune thyroid) about 14 years ago (before my daughters were born). My mom has Hash too, and my brother has Graves disease (also autoimmune thyroid). Makes me wonder about multi-generation infection here. But it will be impossible to unravel all the mysteries of what comes in to play. So much still to learn about infection, disease, autoimmune component. I'm curious to see what will happen to my Hash when I begin treatment. Mary

Kmom, Glad you were able to speak to Dr. J's office. You will have to update us on whether you are able to get Bart treamtment from Dr. B right now. Just a couple of things... I'm not sure that Dr. J would advise that you should do IVIG right at this time. You would really have to have that conversation with him, and see what he says based on various factors (test results, how treatment is going, exam, etc). Dr. J is certainly tops, and if you have a chance to get his evaluation I'd do it. However, the reality is that he is of advanced age, and it's so hard to say how long he'll be in practice. I would also try to establish yourself with another LLMD as well. And it sounds like you may be looking for yourself as well to get an evaluation. That's good that you found out more info about the supposed llmd you saw (not favorable). I'm curious, how did you get a referral to him? Did PA rep also give you other referrals. OK... good luck! Mary

Bio, Were the western blot tests from Igenex? or other lab? What are the positive or Indeterminate bands? I'm not sure if I'm understanding your question regarding symptoms. As to the neuropsych symptoms that are common to many here, those are found in both PANDAS and PITAND (lyme, bartonella, myco, other...). But the lyme symptoms list is more far reaching. So you could have ONLY the neuropsych symptoms, and/or you could have other symptoms. One thing often found with lyme, is that the symptoms come and go, change over time, migrate to other areas of the body. IT WILL BE A UNIQUE PRESENTATION FOR EACH INDIVIDUAL. (and yes, urination issues can be a symptom). Below I'll copy extensive symptom list (all the neuropsych symptoms are not listed, but the can definitely be part of the picture), but also see the "helpful links" folder above for article titled "evaluating your child for tick borne diseases." It's very helpful. Symptoms of Lyme Disease The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular, oval and spreading out (more generalized) Raised rash, disappearing and recurring Head, Face, Neck Unexplained hair loss Headache, mild or severe, Seizures Pressure in head, white matter lesions in brain (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy, Horner's syndrome) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose Eyes/Vision Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes Ears/Hearing Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears Digestive and Excretory Systems Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease) Musculoskeletal System Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia) Respiratory and Circulatory Systems Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage Neurologic System Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness Psychological well-being Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety Mental Capability Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks Reproduction and Sexuality Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain General Well-being Phantom smells Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature Allergies/Chemical sensitivities Increased effect from alcohol and possible worse hangover

Momcap, Yes, all the things you describe, for both yourself and your son, fall in the realm of lyme symptoms. However, the only one who could really say is an experienced lyme doctor. I think you are seeing that your son reacts positively to abx, so that is a clue for you that you are dealing with some type of infectious agent. As to the cunningham test, high camk can be present in a number of infections, not just strep. But you are saying that he has high titers too. So yes, he may have a strep problem. However, that does not discount the idea that there may be another chronic infection (like lyme) at the root of his problems. Have you checked out www.canlyme.com yet? Also, see their symptom list. Maybe you can get canadian doctor referral from them. But also, see the "helpful links" folder above, and see the posting for finding an llmd. Try all the options listed. What state are you closest driving distance to? See also the "helpful links" folder for the article "evaluating a child for tick borne diseases", and see what you think. best of luck. Mary

Hi Mama2Alex, So glad to read your update. It's really heartening to hear the positive improvement in people's children. I can't remember how long your son has been receiving lyme treatment... just a short while? And that's great you know about the bartonella. Seems we have lots of bartonella on the board too. As to you... well, you've likely been reading that this lyme board has lots of membership in the "moms with lyme too" club. I hope you find some answers soon. It will be interesting to see how you do on the doxy. (I wonder about your "allergic reactions" to abx. Do you think this may instead be herx reactions? Rashes can be herxing... but not sure what reaction you are getting). All the best... keep us posted. Mary

Hi Fixit, Hopefully you will get some doctor referrals from your other post. But also, please try the other methods listed in the link as well (for finding llmd). Get on several wait lists if you have to. And if you have family you can stay with up north, you could see if you can get into a doc there sooner for now. I'm not familiar with your child's whole history. And so I'm not sure why you seem hesitant that lyme is a possibility. You have the exposure -- your son lived in the most lyme endemic state (PA), and you visit some of the most endemic areas where your relatives live. He has a test with a positive to a very borrelia specific band, and he is presenting with symptoms in line with lyme. And the fact that he also has a strep problem does not discount that he may well indeed be harboring lyme as his main underlying issue. With this test result, along with symptoms and exposure, it seems likely that a llmd would begin appropriate abx treatment that could make all the difference. But of course, he must be evaluated properly (as I nor no one could say... it must be an experienced doctor). best wishes. Mary

Fixit, I think there are some people on this lyme board in your area, so you could do a separate post asking for llmd suggestions. I might be remembering some people going to one in SC? But also, see this link for how to find an llmd: http://www.latitudes.org/forums/index.php?showtopic=10804&view=findpost&p=91387 You do have lyme in your area. But also, do you travel to more endemic states? And yes, it can be passed congenitally (although I've never heard via father mentioned at all). It doesn't matter at this point. He is showing positive to a very specific borrelia band, and so he should definitely be evaluated by a llmd. The symptoms you describe would definitely fall in the lyme category. See also "helpful links" folder above -- it has an article regarding "evaluating your child for tick borne diseases". Please read and see if any of it makes sense. Good luck.

RNMom, Yes, I think we are saying many of the same things. And yes, lyme definitively creates autoimmune problems -- many autoimmune diseases are prevalent in lyme folks. But much of this can be resolved with proper treatment -- the autoimmunity goes away. So hard to say what comes first in situations where there is much as play. Do you feel that there is at all a possibility that the RF from your childhood was not somehow related to lyme, and that you have had it all this time? I'm sure you know that we have many moms on this board who are finding out that they themselves have had lyme, and passed it congenitally to their children. It can play out in so many different ways -- so there is no standard to compare oneself too. In any event, at the end of the day, it only matters that you all get the proper treatment now! Regardless of all possible chicken and egg scenarios! Mary

Hi Kmom, I responded to you previously, but I then remembered that on one of my lyme email lists, there was a discussion with quite a few people involved regarding lyme and anesthesia. That is, they were discussing whether going under anesthesia had created a symptoms flare. I don't remember the specifics, but lots of people reported this. Any surgery, even a simple one, is a big deal. I'm not trying to be dramatic -- certainly, surgery is a wonderful thing that improves and saves lives every day. I just mean not to underestimate that it is still a stress on the body. Just consider what you think your son's reaction to this surgery will be -- will it be a stressful event that will trigger rage and other symptoms? Maybe wait until he is more stable if you still want to do it? I only say this because the way you are describing it, this is not a critical infectious situation where they must come out immediately.

Hi, I just posted a reply on your other post. But I wanted to wish you well on your son's treatment. It sounds like you are having progress, but also seeing a teeter totter. It's early, and that's pretty normal. Keep us posted. Mary