msimon3
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Posts posted by msimon3
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The -cyclines are sometimes not tolerated well, although we have not tried them. We have tried Bactrim/Rifabutin/Cefdinir and tolerated it well.
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I second Hopeny's recommendation. I would seek out a LLMD in your area, one with a background in immunology or infectious disease, to help you navigate your medical history. It could be Lyme, or a coinfection, or something else. I can send you a message with the name of a doctor in the DC area if you are interested.
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Thanks everyone for the very informative and encouraging posts.
msimon3, I wanted to ask if there were any other signs that eventually led your son's doctor to investigate on the Lyme or was just the tics. I am asking because my daughter had red bumps on her body the summer before the onset while we were on vacation. We saw a pediatrician there who prescribed an anti-allergy medication and the bumps faded away in a day or two. However after, she got fever for a few days and her asthma was on/off (not quite under control) for at least the next two months. So I am not sure if this warrants for more research on the Lyme side. At this time, my daughter's pediatrician dismisses any possibility that her tics may be infection/inflammation related and she only did a throat culture test for strep - it was negative. Are there any specific test done for Lyme?
For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia.
Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection.
The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections.
Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.
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We had the same concerns with Strep and probiotics, but we found probiotics to be helpful during antibiotic treatments. We currently use Primal Defense for Kids which has no Streptococcus and tolerate it well:
http://www.gardenoflife.com/Products-for-Life/Digestive-Health/Primal-Defense-Kids.aspx
When you say 2.5 years of antibiotics, I assume you mean treatment full strength antibiotics rather than a prophylactic dose. We were in a similar position in the past, and currently work with a doctor who cycles treatments to avoid immune system suppression from long-term antibiotic use. So far we are impressed with this approach and think it is working better than continuous full-strength antibiotics. I can message you with the doctor's name if you are interested.
You might also want to consider that the PANDAS/PANS is really Lyme disease. You mentioned joint pain which is a symptom of Lyme disease and not usually associated with PANDAS. Neuropsychiatric symptoms like ADHD, anxiety, and OCD are also associated with Lyme disease, as are rashes (not just bullseye rashes), nerve/neurological dysfunction, weakness, swelling, movement disorders, flu-like symptoms, stiff neck. I would take your complete medical history, including all symptoms encountered, to an ILADS LLMD for a clinical assessment and follow up with testing from Igenex. If it is indeed Lyme disease, taking cephalexin is not likely to help much as it has been shown to be not very effective against Borrelia.
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It won't help for everyone, It helped for my son but thats most likely due to the fact that he had gut issues and people with Pyrolle do better on gluten/dairy/additive free diets.... it's all trial and error i guess. msimon3 did i just read your child ended up having Lymes disease? Which most likely meant no matter how clean the diet was it wouldn't have helped? I def think it's important to rule out any underlying conditions too
Yes, in our case the rapid onset of tics suggested that something other than food sensitivities were the cause. Based on some collateral IBS symptoms and the guidance of well meaning doctors we did embark on testing for allergies and eliminating diary/gluten/corn as potential causes. We thought we saw patterns between some foods and tic frequency/severity, but eliminating these foods did not lessen tics to a lasting or significant way.
Since that time, we have learned that we are dealing with Lyme and Ehrlichia, and that the tics are likely a result of infection and inflammation. The tics tend to wax and wane based on immune system activity rather than food consumption.
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We were told the same thing by pediatricians initially, just wait and they will go away. They didn't, they got much worse, and five years later we learned it was Lyme disease and we are now facing difficult and lengthy treatment. I would see an infectious disease specialist and start ruling out the possibility that the tics are neuropathy caused by infection.
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We tried eliminating gluten, dairy, and corn, and none made any lasting or significant change.
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Tics are frustrating since they could be caused by a number of factors, and you are right to perceive that many doctors will simply want to treat the symptom with neuroleptic drugs. In our situation, the waxing and waning of tics are a helpful indicator in "seeing" the current activity of the immunological process, and therefore the absolute last thing we would want to do is take drugs that would suppress tics.
You might want to try to rule out infection and immunology as the source of your tics. If you are seeing Dr T in NJ, keep seeing him, he has a great mind and can help navigate the possible causes with you -- he can definitely help you understand if your tics are antigenic/immunological or not. Keep on the hunt for the answer to the question WHY. If you think your tics might be due to an infection, pursuing blood tests for diseases that could cause encephalitic symptoms or neuropathy is important. Also keeping a journal of all symptoms will help doctors make any clinical diagnosis.
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I don't disagree with Chemar on the risks of a steroid burst. As with any treatment, there is risk involved that you must consider with your doctor. A steroid burst is immunosuppressive and should be used with antibiotic treatment to avoid allowing infection to spread.
Also consider that TS is a clinical diagnosis whose definition has changed over time, which makes it difficult to be certain what is 'true' Tourette's and what is not. There is no test for TS. What causes a tic is also not definitive: is it brain histamine? it is elevated dopamine? is it autoimmunity? it is microglial activation? It could be many things, not merely elevated dopamine, and the challenge is to identify likely causes and eliminate unlikely causes. Unfortunately, my personal belief is that immunological processes are frequently overlooked by neurologists who focus on treating the symptom rather than looking for the cause.
In our case, we had rapid onset tics and OCD following a fever at age 5. We saw many doctors who said it was Transient Tic Disorder, Tourette's, stress, anxiety, PDD NOS, etc. and none of these doctors considered an immunological process despite the clinical indications. All of them offered drugs, CBT, yoga, diet modifications and "wait and see" type of recommendations that seemed reasonable but ultimately led us in wrong directions and wasted time. Only when we started working with doctors with backgrounds in infectious disease did we make progress. Tics were reduced by 85% during a 21-day steroid burst, only to return once the burst was over. Ultimately, after even more doctors, we found the cause was Lyme neuroborreliosis.
But that is just our case. Your case is different, and the causes of tics are widely varied. I offer up the immunological perspective only because I think it is underrepresented, and wish you the best of luck!
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Lyme can cause neuropsychiatric symptoms often associated with PANDAS/PANS. It is doubtful that the symptoms could arise in one day as you mentioned, but instead is much more likely that an infection occurred earlier than Thanksgiving 2012 and went unnoticed.
You should talk to a LLMD about your bands. If we are looking at Igenex results, IND means not strong enough to be positive, while +/++/+++ are increasing measures of positive results. Bands with ** are considered significant by Igenex based on their studies. See http://www.igenex.com/labtest.htm
These bands are proteins that are sifted by weight, stuck on to a paper blot, and your antibodies either stick to them or they don't. If they stick, and can be seen in enough quantities, then a positive result is scored. Antibodies to other antigens may unintentionally stick to these Borrelia proteins, or some of these proteins may be expressed by non-Borrelia organism, which can cause false positives due to cross-reactivity. http://en.wikipedia.org/wiki/Western_blot
Band 31 is outer surface protein A (ospA, Borrelia, little cross-reactivity)
Band 41 is flagellate protein (not specific to Borrelia, very cross-reactive)
Band 83 is an extracellular protein (Borrelia, some cross-reactivity)
Here is a nice write up from an LLMD in Maryland on the subject:
http://lymemd.blogspot.com/2009/02/understanding-western-blot.html
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You may want to consider the possibility of tics being a symptom of an active neurological infection or an effect of an autoimmune process:
http://www.ncbi.nlm.nih.gov/pubmed/23230453
Many diseases could either infect your nervous tissue directly, like Lyme disease, or cause autoimmune reactions to nervous tissue due to cross-reactivity of the antigen, like M. Pneumoniae / PANDAS / PANS.
I would stay away from CBT and neuroleptic drugs, and instead use the tics as a diagnostic measure of your health. Seek out the counsel of a good doctor who:
- has a background in infectious disease and immunology.
- is willing to provide you a full clinical assessment, discussing all health symptoms you had since age four.
- is willing to order blood tests to assess current state of your immune system, current state of common autoimmune antibodies.
- is willing to challenge the immunity hypothesis with a "steroid burst" for 21-30 days and see if your tics subside. If your tics go away when on steroids, then it is reasonable to believe that the tics are caused directly by an immune process, or indirectly by inflammation caused by an immune process. If your tics are caused by immune process, you will need to find and work with doctors who can help you explore the possibility of current infections versus past infections. Immerse yourself in resources devoted to PANDAS / PANS and Lyme disease, and recognize that many doctors may be uninformed and not well aligned with current research.
Change in diet has not been helpful in our situation, however you can become familiar with the idea that chronic inflammation could lead to "leaky gut" or intestinal permeability which could lead to a variety of neuro-psychiatric symptoms. In other words, if you have dietary sensitivity you should manage it but also consider to role of inflammation as a cause to that sensitivity. http://www.ncbi.nlm.nih.gov/pubmed/22906518
Hope this helps. You have a wide variety of options to consider, but you are on the hunt for the cause which is great. Stay on the hunt until you find it!
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Yes, we have experienced this as well, same range too: 99.2 - 100. For us, the fevers tends to run several days, then stop for a day, then recur.
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We did the full coinfection panel, and we were glad we did. Our rationale was that Lyme testing is not perfect, and more tests correlating to a positive result or a negative result would be good to have. Statistically speaking, more data would be better than less data, especially when confronting false positives or false negatives. Also, since Lyme is one of many tick-borne diseases then there is a good chance that we would see one or more coinfections, which we did. We also paired the Igenex test with a Western Blot from a standard lab (Labcorp) to look for any correlation on WB bands.
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Shaunms,
I agree with others here who say these are tics. Specifically, it looks like a complex motor tic involving the eyebrows and eyes, and shaking of the head.
Your son would not be the first 6 year old boy to absolutely love Star Wars and Lego and want to talk about it all the time. It might be an OCD symptom if he is frequently unable to speak about other subjects without introducing Star Wars and Lego.
These other symptoms you cited are also experienced by kids with PANDAS/PANS or Lyme Disease or some other infectious/immune pathology, with arguably less frequency among Tourette's that has non-infectious pathology (e.g. congenital):
- change in personality
- of late he is not listening
- struggling to sit still
- has had a few tantrums when he could not make his bed
- and he seems to have developed some friendship difficulties
Some key factors to consider:
- Time of event. Did these symptoms all suddenly start one day? Did any illness precede that time? You will read many stories on this web site where children were okay one day, and then next day developed multiple symptoms suddenly -- a clear "before and after" of your child's behavior and symptoms.
- The Café au lait spots. Were they present at birth, or have they developed over time? If over time, did they coincide with the other symptoms? Do they ever disappear and reappear or move? Several tick-borne and viral diseases cause rashes with atypical presentation. If the spots change over time, or disappear with steroid topical creams, then they are likely caused by an immune response to some sort of infection.
Seek out a good doctor and keep looking for a doctor until you find the one who looks at these symptoms the same way you do. You may settle with more than one doctor, and that is okay and typical. Too often doctors will be dismissive, which in turn may influence you to be dismissive. Stay strong and vigilant, and you will find the cause. As you visit with doctors, consider pursuing immunological blood tests to see what is going on inside your child, and save those results for reference. Start eliminating causes as much as searching for them -- this may be a long process for you, and having early blood tests will be very valuable.
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It is good that you are second-guessing the diagnosis. You should get an Igenex Western Blot to verify your results.
The CDC Lyme criteria is considered flawed and too narrow based on the opinion of many enlightened LLMDs. There is a rich history on how this happened, please read Cure Unknown or see Under Our Skin for a primer.
C6 is an ELISA test for an antibody matches a single synthetic peptide derived from a protein from Borrelia. The Western Blot is a test that measures antibody stickiness to a range of proteins from Borrelia (e.g. OspA, OspB, OspC).
On the Western Blot, 41 kDa can be any flagellate bacteria and may be a false-positive for Borrelia. However, traditional test labs following the CDC criteria specifically exclude bands 31 and 34 from the WB test. In other words, if you had bands 31 and 34, a traditional lab would not show it.
CDC-based WB tests for one Borrelia strain only: B31. Igenex tests for two: B31 and 297.
References:
http://www.igenex.com/labtest.htm
http://www.ilads.org/lyme_disease/about_lyme.html
http://www.igenex.com/innovations3.pdf
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Regarding IVIG, using donor blood products and risk of anaphylactic shock are risks you should consider even though it is generally considered to be safe.
While you had a positive test for strep and Myco P, you should also rule out tick-borne disease (Lyme disease and its coinfections) as it can have neurological symptoms such as tics and OCD as well.
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Aside from IVIG, what is your treatment protocol?
We are seeing big improvements in two months using a pulsed antibiotic regimen prescribed by our LLMD. Advocates of antibiotic pulsing say that sustained treatment doses of antibiotics can have an immunosuppressive effect, are stressful on the body, and can lead to bacterial resistance. Pulsing keeps the immune system engaged, is less stressful, and reduces risk of bacterial resistance.
Time will tell. We are not free from symptoms yet, but this protocol has been noticeably effective compared to past protocols.
Since IVIG is itself immunosuppressive, could it be the cause of the low IgA and IgG?
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Have you considered a Lyme test? If not, I would pursue an Igenex Western Blot at a minimum, and ideally go for a Lyme plus Coinfections test.
My DS sounds much like yours, mostly motor tics that wax and wane and are not usually too much trouble. After five years of various suspicions and diagnoses (transient tic disorder, autism, tourettes, allergies, PANDAS) we finally found antibodies for Lyme (Borrelia), Myco Pneumoniae, and Erlichia. Determining the infection was half of the battle, treating it is the other half...
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Mirror UK created a documentary on the Le Roy, NY girls. See if you can spot a cameo from a certain doc from NJ...
http://www.mirror.co.uk/tv/tv-previews/the-town-that-caught-tourettes-watch-video-1399314
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I agree with the guidance from philamom. You can get tics from neurological infections, and you need to rule out those infections. Lyme and Mycoplasma Pneumoniae need to be ruled out as well as strep.
Also pay attention to any other symptoms (mood swings, lethargy, numbness, aches/pains, fevers, rashes, etc) that may indicate infection.
KK- I've not read through all the posts so maybe this was mentioned, but I'm really suprised NO blood tests were ordered. Thats absurd. Not to say that negative blood tests rule out a diagnosis, but I would at the very least check ASO, D-Nase. I would also check for mycoplasma and lyme. Somewhere posted on here is a list of suggested blood tests.
I ditto the advice for a second opinion.
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Yes, it appears it can. Here is a case:
http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseasepresenting.htm
Lyme can infect any area of the body, and create symptoms that very based on the site of infection or the person infected. For this reason, it is known as the "great imitator" and doctors often misdiagnose.
Look into getting an Igenex test, at least the Western Blot. Igenex WB uses two variants of Borrelia and includes IgG and IgM bands that many labs exclude based on CDC-1994 Dearborn criteria. There is a large controversy regarding Lyme and the CDC that I won't go into here, but basically the Igenex test is considered by many to be more sensitive and specific to Lyme infection than traditional labs.
There is some good info in many docs here:
http://library.lymenet.org/domino/file.nsf
There is also a good radio show here, where a researcher describes how Borrelia infections can actually shut down the immune response and possibly render many antibody-based tests ineffective:
http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease
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Perhaps it is anxiety about eating the foods offered, or anxiety about the normal mealtime ritual?
One idea that you could try is to take any possible pressure off the ritual -- leave food out in a non-mealtime area like a coffee table or playroom and see if he is eating it when you aren't around. Have you tried any kind of food, even junky snack foods, to discern between anxiety and pickiness?
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Lyme can vacillate between IgM and IgG perpetually. How the bacteria do this is unknown, but some think the bacteria goes into "cyst mode", evades the immune system, then re-emerges and triggers IgM again.
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khen:
We consulted with Dr. Freij in the past for his expertise in infectious disease and PANDAS. Our impression was that he was patient and helpful, however his views on diagnosing and treating PANDAS/PANS may be more conservative than others. He spent a solid hour with us listening to our history and ultimately thought our timeline and symptoms and lack of positive titers ruled out PANDAS. Unlike some doctors we consulted, he was not outright dismissive but explained clearly the basis for his opinion. He also discussed with us his experience with IVIG, which is important to understand as doctors have varying protocols (e.g. see Dr K., Dr B., et. al.). You might also want to consider consulting with Dr. Chugani at DMC who is also nearby.
Brain Inflammation?
in PANS / PANDAS (Lyme included)
Posted · Edited by msimon3
The idea of PANDAS/PANS is that neuropsychiatric problems manifest after infection, and are caused by immune processes like inflammation. I don't think PANS is mature enough where doctors can pinpoint what is occurring in the body, when, and where, and there is much research trying to answer those questions. Generally it is suggested that the Basal Ganglia in the brain is involved in immune processes, and those processes cause neurological dysfunction.
I agree with Airial95. If your doctor doesn't believe brain inflammation is involved with PANS, then they know little to nothing about the disease.