msimon3

Just found your post after doing a search for recurring symptom frequency. We see a high incidence of symptom recurrence in 21- to 28-day cycles and are battling Lyme. We don't see strong correlation to full moons however. Do you see regular recurrence of symptoms, and if so at what interval?

I would take these results to a reputable LLMD. You need to keep in mind that Lyme Disease is, above all else, diagnosed clinically and these test results may or may not influence an LLMD's diagnosis when considered with your symptoms. According the CDC guidelines, you are not positive because you need a positive Elisa, plus five IgGs (18,21,28,30,39,31,45,58,66,93) or two IgMs (24,39,41). According to Igenex guidelines, you are not positive because you need two positive IgG or IgM bands (23-25,31,34,39,41,83-93). Igenix's Western Blot is considered by some to be superior due to their technology, and the CDC guidelines were originally developed as a means to identify a population rather than establish diagnosis. More on that here: http://www.ilads.org/lyme_disease/about_lyme.html CDC/Igenex differences aside, both methodologies rely on detection of antibodies to the bacteria, rather than measuring the bacteria itself. Since Borrelia has been shown to create immunosuppression in other mammals, there is good reason to believe that this process might also occur in humans. And if that is true, having RA in 1997 but checking for Borrelia antibodies in 2013 might indeed raise question about immunosuppression and whether or not anyone would expect to see antibodies in your blood tests at this point. More here: http://www.ncbi.nlm.nih.gov/pubmed/12819085 I think a good LLMD would not only have a point of view on the value of serological tests and immunosuppression, but could also address the timeline and type of symptoms you experienced, RA or otherwise.

Yes it could. There is the Rapid Strep Test, which tells you in about 15 min if you have strep. Then the overnight culture, which is typically (not always) done if the RST is negative. Both of those are throat swabs. And then there are the titers, specifically antideoxyribonuclease-B (Anti-DNase and Anti-streptolysin (ASO) which are blood tests looking for your antibodies to strep bacteria. All four strep tests have well known sensitivity rates, and none are 100% sensitive, meaning that false negatives are possible for any single test. There are many stories here on these boards that tell of initial negative strep tests, only to find out that later strep tests were positive or that symptoms improved after treatment for strep.

I haven't heard of neck injury causing tics, however neck pain could be a sign of meningitis caused by an infection. Any other symptoms such as neck stiffness, rash, fever, sensory issues may be important to note and could be helpful in identifying possible infection. It might be worthwhile to have your pediatrician check him out.

Tics can indeed change often. There are typical patterns of waxing and waning, which might describe overall frequency of tics in a given time period, and then there are fluctuations of intensity that range from 'barely noticeable' to 'may cause physical injury'. You are going to need to find doctors who are not dismissive and are open to finding the cause. A neurologist who can classify the type of movement disorder being experienced would be helpful, as well as a doctor with a background in immunology or infectious disease to help rule-in/rule-out any immunological processes. Whatever was happening in the weeks and months prior to the start of the tics may well be important and should be shared with each doctor in order to aid any clinical assessment. Good luck, several here have had to go through the same process and steps as you, and you have a wealth of resources and support here to help you.

Considering the tics appear to be rapidly onset and there is no family history, you should consider the possibility that the tics are a symptom of a neurological infection. I would try to rule out infection as a cause, get a comprehensive set of blood tests done to look at her immunologic function. You could also check for antibodies for infections that would plausibly cause neurological dysfunction: things like Strep (PANDAS) or tick borne diseases (Borrelia (Lyme), Babesia, Ehrlichia) are possible culprits. Lastly, while the tics are apt to command your attention, be mindful of other more subtle symptoms that might be occuring as well -- things like rashes, numbness, OCD, numbness, nausea, joint pain may seem like common fare when raising kids but may be important clinical signs of disease to be considered with the tics.

Done with antibiotics. The steroids are immunosuppressive, so you take antibiotics while on steroids to prevent infection or worsening of an active infection.

I think 5 days is a bit short, but doctors like to start there. We ultimately used a 21 day burst to confirm an immunological process was causing tics/ocd. On day 21 the tics/ocd were completely gone. Days after the steroid was stopped, the symptoms returned dramatically. We are dealing with Lyme, but with any infection you can indeed make it worse because of the immunosuppressive effects of the steroid. Therefore, you absolutely must have antibiotic treatment during the steroid burst to attempt to mitigate the growth of the infection. If the symptoms do not stop during the burst, then it is indicative that some process other than the immune process is causing the OCD.

Doxycycline has been shown to be very effective at killing Borrelia, however it also has a high rate of converting spirochete forms of Borrelia to cyst form relative to other drugs. In other words, the Borrelia that survive Doxy will go into cyst form, where it is thought they will hibernate until conditions are safe and then revert back to spirochete form and continue infection. Current research and opinion on chronic/recurring Lyme disease is that the Borrelia survives in cyst mode or in colonies protected by biofilms or by residing in tissues where some antibiotics have difficulty penetrating.

Trimethoprim/sulfamethoxazole, aka Bactrim, is effective at treating many gram-positive and gram-negative bacteria. It is used frequently to treat Strep or Lyme, but some doctors may prefer to use additional or other antibiotics based on anticipated effectiveness or tolerance to the antibiotics.

Regarding PANS vs Tourette vs OCD: it is a broad question and difficult to answer. Generally, PANS tries to describe how and why the body experiences certain symptoms after pediatric infection (PANDAS=Strep, PANS=many pathogens) whereas Tourette and OCD are names for conditions as described by specific symptoms and behaviors. It other words, very strictly speaking, it could be one or the other, or all of the above. For example, if you get Strep then have neuropsychiatric problems as a child, then you may have PANDAS/PANS. Are those neuropsychiatric symptoms compulsions or obsessions? Then you may have OCD as well. Are those neuropsychiatric symptoms motor or vocal tics that last for more than a year? Then you may have Tourette Syndrome as well. It will be very worth your time and money to work with a doctor who is willing and able to explore the "why" and "how" and "when" with your DD and help narrow your focus. Our experience with Dr T was very positive as he tended to look fairly at possible causes, an approach we didn't always get with some doctors.

You should confirm with the ordering doctor if you are getting the ELISA, and if they cannot confirm then you may need to find another LLMD Kidding aside, if the test is like this one, then it is an ELISA followed by a Western Blot *if* the ELISA is positive: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6646 Generally if you see "EIA" or "C6" on your test order or description, then it is the ELISA.

Any doctor who suggests your DD is more likely to have Tourette Syndrome vs PANS had better be an expert on Tourette Syndrome and/or PANS. Speculation based on weak experience is weak speculation and should be considered appropriately. You will benefit from finding and using doctors who have a background in PANS, Lyme, infectious disease, neurology, or immunology who also are willing and able to explore and discuss potential causes with you. Seeing multiple doctors will give you the benefit of getting varying clinical opinions, some of which may be helpful. Testing may also be helpful and should be pursued, but just keep in mind that testing is not perfect -- many tests have false positives and false negatives and you need to consider what the test results really mean. Testing generally is *not* done while on antibiotic therapy, however the timing of the tests and therapy really needs to be directed by the doctor who is treating and testing. The observation that your DD has reduced symptoms while on antibiotics is important. Other observations like tic/OCD activity while sick, while healthy, while stressed, or while eating certain foods might also be important. Any symptoms besides tics/OCD may also be equally important. Keep a detailed log or journal. As you continue down this path, your recorded observations will be more and more important to doctors, especially if testing proves inconclusive and clinical diagnosis is necessary.

From what you described, the key factors I see are: On Lyme: "First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it." On your doctor: "he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC" On your treatment: "so I've been on a severe course of antibiotics...and shockingly, my body is improving significantly" You would benefit from seeing a doctor who understands chronic Lyme disease thoroughly, and who is willing to treat the disease appropriately and with modern methods. Many doctors affiliated with ILADS will be suitable, and several members here can provide you with recommendations and personal experiences. Some of these doctors will not accept insurance -- this is by design to avoid treatment interference from the insurance companies and ultimately frees the doctors to treat you as they see fit -- this is a relatively expensive approach but arguably the most reliable approach for getting appropriate treatment. Given your other symptoms and conditions, finding an LLMD who has a background in immunology would be best I think, as he/she would be able to address those conditions in addition to the Lyme disease.

I know you are seeking guidance on diet and supplements, but I would also recommend exploring the likelihood that the tics are a result of inflammation and infection. Several members here have similar stories to yours, and some have discovered that bacterial or viral infections were the cause and diet/supplements have a mitigating effect on the symptoms. In additional to your pursuits on diet and supplement changes, you might also benefit from looking for diagnostic or clinical signs of infection.

We have not used Ceftin (Cefuroxime) personally, but it has been shown to be an effective drug against spirochete forms of Borrelia. A key consideration, especially if the infection went untreated for three years, is that the Borrelia is also present in cyst form and L-form which is fairly common. Ceftin alone will only attack the spirochete form, and any living Borrelia can revert from cyst form back to spirochete form and cause new symptoms post treatment. A good LLMD will have a treatment protocol that recognizes the multiple forms of Borrelia and provides a strategy for defeating them. I would be wary of expecting success from a single treatment cycle of 4-6 weeks with one antibiotic, as it seems to run contrary to relatively modern approaches followed by LLMDs affiliated with ILADS. Hopefully the 4-6 weeks of Ceftin will clear infections and symptoms, but if not I would seek the guidance of a doctor who can provide a comprehensive treatment protocol for late-stage Lyme disease.

Many many people have Lyme who do not recall a tick bite or ring shaped rash -- this is a 20+ year old guideline that has since been shown to be a relatively poor clinical indication amid a modern understanding of the variety of symptoms Lyme disease, and possible coinfections, can produce. Neuroborreliosis is an infection of the nervous system tissue by Borrelia, and causes a wide variety of neurological symptoms from the meningitic types you list to motor dysfunction to behavioral changes. Lyme disease is a clinical diagnosis, so you should see a Lyme literate medical doctor (LLMD) and many here will recommend seeing one who is ILADS affiliated and will have a modern approach relative to doctors who practice strictly to a narrow definition set by the CDC in 1994. Your LLMD can diagnose Lyme disease based on clinical observations alone, as the diagnostic tests available suffer from high rates of false negatives and potential false positives. A traditional Lyme diagnostic test, per 1994 CDC guidelines, would have you test positive on an Elisa C6 blood test first, then require you to have a select 5 IgG or 2 IgM positive bands on the Western Blot. A more modern approach would have you skip the Elisa outright, and either test positive for Borrelia-specific antibodies on the Western Blot or test postive for Borrelia DNA directly using a PCR test. Igenex and Stony Brook are commonly used for Western Blots due to their superior diagnostic approach, and Igenex also offers co-infection testing for Babesia, Bartonella, and Ehrlichia. Labcorp and Quest are also ok, but please be aware that they only test for one variant of Borrelia burgdorferi (B31) whereas Igenex tests for two (B31, 297). Moreover, both of these labs test for fewer bands (Borrelia proteins) which makes them prone to show a less accurate picture than test from Igenex or Stony Brook. Lastly, your LLMD should recognize that Lyme disease technically is infection from Borrelia burgdorferi, but many doctors have suspected that other species can cause illness similar to Lyme disease. There are 36 known species of Borrelia, and this year Borrelia miyamotoi was confirmed to cause disease similar to Lyme. Imugen has a blood test available for B. miyamotoi infections.

qannie47: I should have said there is no practical and definitive test for Lyme. Any test can have false negatives if the sensitivity is less than 100%, and false positives if the specificity is less than 100%. Most Lyme tests are testing for your antibodies and have considerable false negatives and false positives. A positive PCR test result for Borrelia DNA is the closest thing I have heard of a "true test" for Lyme, but the sensitivity is relatively low to other tests due to the need to capture Borrelia in the blood, then amplify its DNA enough to get a positive read. Cultures and visual analysis can also be done, but tend to be expensive and also suffer from low sensitivity if the Borrelia is not captured in the blood. pchelle: An LLMD would likely consider your test results positive, and I believe those results are also CDC positive because of the two IgM positives on 39 and 41. The Western Blot bands each correlate to specific proteins of one strain of Borrelia burgdorferi (strain B31). Your IgG Bands: - 41kDa is flagellate protein, not unique to Borrelia - 58kDa heat shock protein, not unique to Borrelia - 66kDa outer membrane protein, not unique to Borrelia Your IgM Bands: - 39kDa is flagellate protein, unique for Borrelia - 41kDa is flagellate protein, not unique to Borrelia As rowingmom suggested, there may be other infections to deal with as well. Bartonella, Babesia, and Ehrlichia are common coinfections that should also be considered. Some LLMDs prefer to order a coinfection panel, whereas others will make a clinical diagnosis for possible coinfections and treat with a protocol that hits the coinfections with the Lyme as well.

Just curious, what were the specific blood work results? While blood results can be helpful, Lyme is still a clinical diagnosis because there is no single test that can definitively say you have Lyme or you don't. The low Ig results are interesting though. Borrelia has been shown to be be immunosuppressive in dogs and mice, and the theory is that this might be true for people as well. Per the CDC, Lyme disease is still defined as an infection by Borrelia burgdorferi from a tick bite. It is plausible to think that Lyme could be communicated by other biting bugs or congenitally. Many many people with Lyme do not recall a tick bite. Many also do not get the bullseye rash. Try seeing an ILADS affiliated LLMD, have a clinical assessment, discuss the possibility that you might also have Lyme and coinfections (like Bartonella/Cat Scratch Fever), and discuss treatment options. Taking Doxycycline alone is not a protocol that most LLMD will recommend, as it has been shown to be effective in killing the bacteria (which is good) however it also has been shown to be effective in mobilizing the bacteria into cyst form (which is not good) at which point the Doxy cannot kill the bacteria. For this reason, many LLMDs will recommend a protocol that uses multiple antibiotics, each that target a specific form of the Borrelia (spirochete, L-form/CWD, cyst).

I would buy a LiceMD kit from the local drug store, and use the comb to inspect your daughter's hair carefully. If you see nits (eggs attached to the hair, like a tiny grain of rice) or a critter, then you need to consider that the lice are in your house which might be a bigger job for you. If you find nothing, you can treat your daughter anyway as a precaution -- the LiceMD stuff is silicone based, not too stinky, and suffocates the lice.

Dedee, we saw the same symptoms come back after a steroid taper. This confirmed our suspicion that the symptoms were immune related. It would seem that if your DD's symptoms get worse, then those symptoms are somehow influenced by her immune system. If the OCD is unchanged, steroids or not, then it would seem as if the OCD may not be caused by the infection or perhaps the OCD is no longer a function of the infection or the immune process. Maybe some standard blood work could be used to see if your DD is still fighting an infection after the steroids? Some people also think CD57 is a useful marker for chronic Lyme while others say it is inconclusive. This year Eva Sapi confirmed that Borrelia build biofilms that help the pathogen survive in the body despite antibiotic treatment. You might want to engage your LLMD on a discussion about biofilm+antibiotic protocols if that is something they would consider.

I believe the proper treatment for C667T is L-methylfolate: http://www.ncbi.nlm.nih.gov/pubmed/22108397

We have Lyme, and did a taper back when we didn't know what was causing symptoms and wanted confirmation that they were immune related and not food/stress/allergy/etc. The taper needs to be done with antibiotic use, and preferably with antibiotics that are tailored for whatever you might be infected with, since the immune system will be suppressed during the taper. Conceptually, neuropsychiatric symptoms that are not immune related should be unaffected during the steroid taper, while those that are immune related should decrease. This was helpful for us to confirm an immune process, but frankly it does pose some risk and you need to weigh how valuable this confirmation will be worth amid the other clinical or diagnostic information you have. For example, you have two bands for Lyme WB testing plus these clinical symptoms. You might take additional tests from Igenex, then go to a new LLMD and get another opinion, and then reassess whether you need to do a steroid taper. If you think your LLMD is not diagnosing or treating out of fear, which is a valid perspective given some of the disciplinary activity of insurance companies and state health boards, then you need to find an LLMD who is not fearful. Any fear is going to bias diagnosis and treatment, and really obfuscate the truth at hand. The schism and debate in the medical community over Lyme disease either encourages doctors to explore and engage, sit on the sidelines and follow 20 year old CDC guidelines, or stay away completely. If you suspect Lyme disease, you want a doctor who will explore and engage this disease with you.

Several LLMDs will use a combination of antibiotics, not just one, that have shown to be more effective against Borrelia and coinfections. I recall reading a study where the -cyclines are very good at CNS penetration and killing spirochete forms of the bacteria, but they also tend to create relatively more cyst forms of the bacteria. A secondary antibiotic like an -azole is commonly used to go after the cyst form, something like Flagyl or TIndamax. Cycling the antibiotic therapy on and off and on again is also sometimes used to allow time for the cysts to revert back to a form where they are more readily killed. A good LLMD will understand these various forms and have a treatment approach for them. I will PM you with our doc if you are interested.

Sadly, the state of Lyme testing is such that one Western Blot may not mean much. Please note that the WB test is measuring antibodies for 1-2 variants of 1 of 36 species of Borrelia. A negative test doesn't necessarily mean you don't have Lyme disease, but instead means that not enough antibodies were measured to show a positive. In dogs and mice, Lyme has been proven to be immunosuppressive and therefore a WB on these animals would show a negative. The difficulty is that a single positive or negative test doesn't prove much, and you need an LLMD to make a clinical assessment. If you reply with your location, perhaps members can message you with their recommendations. We used this resource in the past: http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74 We also sought out the help of doctors who are affiliated with ILADS. While I am not aware of ILADS maintaining a registry of doctors, I think you will find the major LLMD's have exhibited at ILADS conferences in the past, and you can see some snippets of their presentations here: http://www.ilads.org/media/videohome.php