philamom

Ok...thanks. I'll have to call and see what test they feel needs fasting. My daughter does better with food in her stomach. Here are the tests checked off on the Shoemaker Physician Order Sheet: HLA DR by PCR, VIP, MSH, ACTH, CRP, TGF-B1 ,MMP-9, PAl-1, Lipid with Phenotype, B-Type Natriuretic Peptide (BNP), C3a & C4a "jewish lab". I just had a doctor sign off on the sheet with all the labcorps test marked. Is anyone running all of these tests?

OMGosh...I didn't realize they could go that high! My daughter LFT's are constantly elevated but never higher than 49.

There is a picture of them on drjoneskids.org

There will be a Lyme Light Fashion Show on June 11th (4-6:30) sponsered by Jefferson University's Myrna Brind Center of Integrative Medicine. This event is designed to shine a light on the youth impacted by Chronic Lyme disease. For details see www.montcolyme.org There will be a TV feature tomorrow, 6/2 (5:30), on NBC Healthwatch with Renee Chenault-Fattah who will interview some teens with Lyme about their experiences with Lyme disease.

Here is a message I received in return of the message above: In a message dated 6/1/2011 1:39:11 A.M. Eastern Daylight Time, JuliaFWagner@aol.com writes: Thank you Thank you - -many of you have written and called PBS -- the reaction it provoked was a phone call to Open Eye Pictures explaining that the IDSA had not called them. They now said they read the "Yale Panel" review of the film, and that this was the basis for their canceling the film on PBS World, YInfo. The timing is such that this explanation came after they had already informed Andy Wilson that the film was canceled due to a technicality, and, after all of you started emailing and calling PBS. While Open Eye Pictures has accepted that that is their reason, it still demonstrates inappropriate vetting of the press release. The "Yale Panel" (http://publichealth.yale.edu/news/news/2011/lyme.aspx) was made up of 3 of the Lyme Disease Guideline Panel members only, and is reflective of only one point of view. This opinion was issued as a Yale press release. PBS should have vetted the release and evaluated it against the counter viewpoints, particularly given the content of the film and the findings about these very same Guideline Panel members (re: conflicts of interest findings, ignoring divergent science). Yale appears to be allowing their "brand" to be used by this sham "panel" to promote a point of view for purposes of shutting down public information, which we would think would be contrary to the values of a premier academic institution. Channel 12, WHYY, in Southeast PA is holding strong in showing the film -- it is a Sunday afternoon 3pm - which is after all, kind of prime time. I am not aware yet of any additional screenings. Thank you for acting, Julia Wagner, MontCoLyme and LymeActionPA

Justine- Are you using the calcium living clay from Bio Pure? How is the taste?

Did you do any of the other tests as well (HLA PCR+MSH+VIP, TGF-1, TSH+T4F+T3Free). Will be interesting to hear the results of these tests. I just went to labcorp to have these tests done (and the other "labcorp only" on Shoemaker's Mold Panel) and was told I needed to fast first. Same for everyone else? Also, they needed some of the liquids that are used for mixing the tests...so I have to wait until they get them. I'm glad I found out this info. before I brought my daughter in.

Not enough! She takes Burber am/pm for detox and probiotics (250 billion cfu). Some nights I give her Calm for magnesium. I recently added in Parsley (detox) and Vitamin D, but she got extremely emotional (crying every day) and not wanting to finish school so I stopped. Will try again in two weeks when she is done school. What detox did you use to help with the tingling/numbness?

Channel 12, WHYY, in Southeast PA is showing it Sunday at 3:00pm.

My daughter tested positive for the HLA DR4 gene with Quest. Her LLMD tested for a series of HLA genes. I plan to run some other tests on her with labcorp, so I think I'll have it done with them as well.

02.10 >> Sometimes It's All In Your Genes Sometimes It's All In Your Genes Have you ever been told to tuck your pants into your socks before frolicking in the meadow? Or have you ever had to do a "tick check" when you get back? Have you ever wondered what was so dangerous about ticks? Ticks are small creatures that belong to the same family as spiders. They are parasites, feeding on the blood of mammals and birds, and they especially like to live in meadows and tall grasses. Ixodes scapularis = deer tick In the United States, there are two main types of ticks: the dog (or wood) tick and the deer tick (pictured here). When you put on bug spray, tuck in your pants, or check yourself for ticks, you are mostly concerned about the deer tick. Deer ticks themselves are a little gross, but not harmful: however, they can carry the bacteria Borrelia burgdorferi that causes Lyme disease. And Lyme disease is bad. When a tick carrying Borrelia burgdorferi bites you, the bacteria, known as a spirochete, enters the body through your skin. Amazingly, the tick's saliva contains chemicals that temporarily inhibit your immune response, allowing the spirochete to reproduce within the layers of your skin and move outwards. As the spirochete grows inside the bloodstream, it causes a characteristic bulls-eye pattern around the infected site in about 80 percent of infected people. As spirochete numbers increase, they travel through your blood stream to other parts of your body, primarily the joints, heart, and central nervous system. Symptoms of infection at this point include flu-like symptoms, muscle pain, and joint stiffness. If left untreated, these symptoms will persist and worsen, often resulting in a type of arthritis known as Lyme arthritis. Fortunately, Lyme disease can be treated with a course of antibiotics lasting several weeks. Antibiotics are effective in the majority of people. B. burgdorferi dark field illumination from the American Society for Microbiology. Treat It Right Away Antibiotic treatment needs to be given promptly after tick exposure. If it is delayed for a couple of months after tick exposure, symptoms of Lyme disease can persist despite antibiotics and you are said to have chronic treatment refractory Lyme disease (TRLA). For years scientists puzzled over why some patients continued to suffer from the symptoms of Lyme disease despite antibiotic treatment. The current hypothesis is that in these patients, the bacterial infection has elicited an autoimmune disease. In a normal immune response, the immune cells called T cells are stimulated to produce interferon gamma that is supposed to regulate your immune response. Other immune cells, called B cells, are stimulated to produce antibodies to fight the invading foreign body. But something can go wrong: in an autoimmune disease, the immune system launches this attack against a protein normally produced by your body itself, known as a self-protein. Dr. Brigitte Huber, an immunologist at Tufts Medical School, hypothesized that in the case of Lyme disease, the bacteria mimicked this self-protein. In this case, antibiotics will not relieve the symptoms of Lyme disease because, even though the invading foreign body disappears, the immune system is still attacking the self-protein. And it cannot stop. In order to prevent chronic Lyme disease, then, we need to understand why an infection by Borrelia burgdorferi sometimes becomes chronic despite antibiotic treatment. Dr. Huber thinks she has found the answer. The key lies in one particular allele of a Human Lymphocyte Antigen (HLA) gene. What Is An Allele? Let’s start with the definition from Biology-Online.org: An allele is "One member of a pair (or any of the series) of genes occupying a specific spot on a chromosome that controls the same trait." A trait could be blood type, curliness of hair, or susceptibility to poison ivy, for example. Typically, for a simple trait, you’d get one allele from your mother and one from your father. Usually, one allele is characterized as dominant and one as recessive. If either parent contributes the dominant version of the allele, you'll have that trait (e.g., freckles). If both parents contribute the recessive version of the allele, you'll have that trait (e.g., color blindness). Here’s an example from botany at About.com: "The gene for seed shape in pea plants exists in two forms, one form or allele for round seed shape ® and the other for wrinkled seed shape ®. …Round seed shape ® is dominant and wrinkled seed shape ® is recessive. Round: (RR) or (Rr), Wrinkled: (rr)." HLA Genes But genes influence more than how you look: they oversee how your body behaves. There are lots of genes handling lots of things in your body, including the production of various proteins. In particular, there is a family of HLA genes. The National Institutes of Health explain HLA this way: "The HLA gene family provides instructions for making a group of related proteins known as the human leukocyte antigen (HLA) complex. The HLA complex helps the immune system distinguish the body's own proteins from proteins made by foreign invaders such as viruses and bacteria." Dr. Huber began her research into the genetic mechanisms behind Lyme disease by looking at the genes of infected patients. In particular she looked at the HLA genes because they are known to encode genes that determine an individual's response to antigens. She found that patients who developed chronic Lyme disease had a different allele of the HLA-DR gene than those who recovered with antibiotic treatment. Specifically, those with chronic Lyme disease had the HLA-DR4 allele, whereas those who recovered had the HLA-DR11 allele. Based on these observations, Dr. Huber predicted that the HLA-DR allele type was an important indicator of whether an infected person would develop chronic Lyme disease. In order to test her hypothesis, Dr. Huber used the transgenic technique to insert human genetic material into mice. These transgenic mice had identical genetic information, except for one human gene known as a transgene. Some of the mice had the human HLA-DR4 transgene and some had the human HLA-DR11 transgene. Dr. Huber then infected the mice with the spirochete that causes Lyme disease. She wanted to see if there was a difference in the immune response between the two genes. Dr. Huber found that the mice with the HLA-DR4 allele produced lots of interferon gamma and no antibodies to the spirochete. In contrast, the mice with the HLA-DR11 allele produced lots of antibodies but no interferon gamma. In other words, simply the presence of the DR4 allele was enough to trigger an inflammatory immune response. All of the other genetic information in the mice was exactly the same. "This was quite a shocking result," Dr. Huber recalled. "We did not expect this all-or-nothing response." Is HLA-DR4 the Culprit? It appeared from this first set of experiments that the inflammatory response could be traced back to a single allele of the HLA-DR gene. Previous experiments had shown that mice with the HLA-DR4 allele developed chronic Lyme disease when infected with the live spirochete. Despite antibiotic treatment, the mice still developed joint swelling, a characteristic symptom of human Lyme disease. As a result of the experiments, Dr. Huber predicted that if you infected mice carrying the HLA-DR11 allele with the spirochete, they would not develop an infection. To test this prediction, Dr. Huber infected HLA-DR11 mice with the spirochete. Once the mice developed symptoms of Lyme disease, they were treated with antibiotics. As soon as the mice were given antibiotics, the symptoms of the disease disappeared. The results of these experiments confirmed the previous results that the development of chronic Lyme disease depends on the presence of the HLA-DR4 allele. Why is this particular gene so important? The DR allele is responsible for presenting the antigen to the T cells for an immune system response. When the antigen is presented to the T cell in the context of the DR4 allele, T cells are stimulated to produce interferon gamma, an inflammatory response. In contrast, when the antigen is presented in the context of the DR11 allele, it stimulates the production of antibodies, a response that does not induce inflammation. The antibodies bind to the bacteria and eliminate it. So somehow the presence of either the DR4 or DR11 allele determines the T cell response — whether to produce interferon gamma and launch an inflammatory attack or to produce antibodies to the antigen, instead. In the case of DR4, once the immune response has begun, it is self-perpetuating because interferon gamma will stimulate T cells to produce more interferon gamma. Thus the initial immune response determines the outcome of the disease in the long run. Interestingly, the HLA-DR4 allele has also been implicated in the development of rheumatoid arthritis. Dr. Huber expects that rheumatoid arthritis is caused by an autoimmune response similar to the body's response to Borrelia burgdorferi infection, but additional research is needed to confirm this hypothesis, because no infectious agent has been identified so far that would cause rheumatoid arthritis. What Now? Since we cannot change our genetic information, future research for Dr. Huber focuses on blocking the immune response. If you could find the self-protein inducing the autoimmune response, it would be possible to make a similar protein that would block the response. There are already anti-inflammatory antibodies being used to treat other diseases such as rheumatoid arthritis. If there was a way to stop interferon gamma from binding to its receptor, it could prevent the development and propagation of an inflammatory immune response. This could be tested using a mouse model in two ways. First, you could take a DR4 transgenic mouse, infect it with the spirochete, wait for inflammation, and then administer interferon gamma antibodies to see if they prevent the development of the disease. Second, you could make a mouse model that lacked the gene for the production of interferon gamma, known as a knockout mouse. Based on Dr. Huber’s hypothesis, one would predict that a mouse that could not produce interferon gamma would not develop Lyme disease when infected with the spirochete. Dr. Huber hopes that her findings will lead to the eventual treatment and cure of chronic Lyme disease. Dr. Brigitte Huber is a Professor of Pathology at Tufts University Medical School. She became interested in the immune system as an undergraduate student because it was the newest and most exciting field of biology at the time. She enjoys doing research because things are always different and she learns new things every day. "There is still so much to be learned about the immune system and the human body in general," she remarked. When not in the lab, Dr. Huber loves to garden — she even has a winter garden in her house. She also enjoys doing yoga, skiing, hiking, and exploring. Subscribe to all of our stories! Follow us on Twitter! -------------------------------------------------------------------------------- What A Year! is a project of the Massachusetts Society for Medical Research. And it is funded by a grant from The William Townsend Porter Foundation --------------------------------------------------------------------------------

bumping...so I remember to print this tonight.

If you decide to test the tick, you can test with Igenex Lab (California) or there's a list of labs on this website under Tick Testing. www.tickencounter.org

I recommend trying to find a way to watch this film. I plan to donate a copy to our local library. At our recent llmd appointment, there was a picture of a beautiful young woman on the doctor's desk. I made a comment about her, and was told it was the girl in the film who was paralyzed and had to be carried around by her father. She was treated and eventually went on to graduate with high honors and is doing extremely well!

This symptom is increasing daily (or at least the severity). Can someone tell me what vitamins may support nerve damage? Is it the B's? Thx

Hello Chris, At the very least, I would place the tick in a baggie or jar with moist (not wet) cotton ball or blades of grass to keep it alive in case she presents with symptoms. I also recommend seeing if a physician will put her on 30 days of amoxicillin. Many doctors will not prescribe without a bullseye rash and/or symptoms. If you decide you want to test the tick --we could give you information on labs that can test it for Lyme (Bb) and other tick borne co-infections. I highly suggest having your other child (son) tested for lyme with Igenex Lab. Post again if you need additional details. Melinda

Yay!! Thanks for sharing. Love hearing the positive updates, even if there's some backsliding in between.

Yes, I watched it entirely. Gut-wrenching...it makes me so mad/sad! I'm so grateful for the wealth of information (to decipher) that I receive from this forum. To imagine getting a diagnosis in less than 15 minutes...yet, it happens everyday!

Heartbreaking!!

Here is an email I received from the president of our local lyme chapter (Montgomery County, PA). It's regarding the PBS showing of "Under Our Skin". There is an email to contact to fight for showings of this documentary in your area station (PBS World http:www.worldcompass.org/contact). First of all, I must say that this might seem a bit hysterical. In fact I am still in shock. I can only say, that another layer of my naivete has been smashed. This week I was contacted by a reporter who had previously interviewed me and featured some stories on Lyme patients. He had been contacted recently by an infectious disease doctor representing the IDSA who wanted to "clear up some inaccuracies" in the Under Our Skin film that is, or I should was, scheduled to show on PBS Y-Info on June 2-3rd in our region. The reporter picked up the phone and called me. We were aware that, about 6 weeks ago, infectious disease (IDSA member) doctors started calling PBS stations asking them not to show the film, they also wrote letters (and Open Eye Pictures as well as I have copies of these letters), they used several different messages to accomplish this. One station folded to the pressure in Minnesota, but it appeared the scheduled showings across the nation stood. Until this week. I checked the schedule for the film after talking to the reporter, and couldn't find it, so I called Open Eye Pictures. I got Andy Wilson, the film's Producer, and learned some unbelievable news: The IDSA has gotten to the top of the PBS chain - PBS World - and convinced them that the film should be pulled. Andy learned this because he received a phone call, and they were informed that due to a technicality the film would not be shown, and they ended their contract. The technicality was the labeling of one of the speakers who should also have been identified as a co-producer of the film. PBS has specific requirements on labeling of speakers, etc., and when a film is undergoing review to show on PBS, there are often things that get picked up that need to be edited before it is ready to go. This is pretty standard - so it seemed that it should be a small matter, in fact they had previously picked up one other matter, which was updated very easily. This time, there was no discussion, they were just not showing the film period, it was clear there was no discussion. PBS World and PBS Y-Info have cancelled the showing of Under Our Skin! Let's be very clear - this film is a documentary film that accurately portrays the lives of 8 patients over the course of 4 years as Lyme patients. It is not a science education film; it is a documentary film. It tells it's scientific story through interviews with experts from both sides of the medical debate and does not put words in their mouths. These are their words, and the IDSA speakers all had the full benefit of their PR and Communications experts and coaches in their preparation prior to the filming. These are their words and their point of view that are accurately portrayed as is the counter view point. This is a documentary film revealing the diverse points of view as a backdrop to the real story, the patients journey as Lyme patients. The good news? Our local PBS station has decided to go ahead and show the film on Channel 12 - see below email I received after a phone call with the same information. Our YInfo channel is a national format programmed by the Corporation for Public Broadcasting (CPB) under the brand, WORLD. WHYY has no control over the programming decisions made by WORLD. Although Under Our Skin was originally scheduled to be broadcast by WORLD and carried on our YInfo channel, WORLD has decided to remove the documentary from their schedule at this time. You can learn more about the WORLD format at: http://www.worldcompass.org/content/about and they can be contacted at: http://www.worldcompass.org/contact Due to the positive response from our viewers regarding Under Our Skin, the program has been moved to our primary TV channel, WHYY TV12 (Over the air on 12.1, Comcast 12, 240 and 812, FiOS 512). However, because of this change, there will be only one showing. Under Our Skin is scheduled for: Sunday, June 19 at 3pm Therefore, PLEASE CONTACT BOTH PBS - BELOW IS THE CHANNEL 12 MANAGER. The scheduled screening is at 3pm on a Sunday. I was clearly told that it is not 100% confirmed and may still be on shaky ground so make sure you let this program manager know how glad you are that they are showing the film, and ask them to 1) show it more than once and include at least one prime time (evening), better yet, 2) ask them to show the FULL version of the firm instead of the compressed version. Christine Dempsey is our Vice President and Chief Content Officer. She can be reached at: cdempsey@whyy.org cc: Brendan Regan, talkback@whyy.org (member services) And contact PBS World http://www.worldcompass.org/contact to let them know what you think of this interference and suppression of a story that should be told. Such interference by a medical society in public broadcasting decisions is incredible -- especially when they had every opportunity to provide their expertise and did so in this film. This is a documentary film that truthfully depicts the stories of 8 patients - these stories need to be told -- and depicts the different medical viewpoints through interviews, and through what each scientist and medical expert actually says. I would appreciate hearing from you all so I know someone is "talking back" on this issue. Thank you! - Julia Julia F. Wagner President of MontCoLyme (Montgomery County (PA) Lyme Information and Support Group)MontCoLyme@aol.com MontCoLyme - 211 Main Street, North Wales, Pa Medical Advice Disclaimer: The information included here and through this group is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. This group does not provide professional medical advice. Chair, LymeAction PA, a state-wide coalition, www.lymeactionpa.com c) 267-254-8605

Wilma- I would give Dr. B**** a call and tell him you just received a positive Bartonella test. He may be willing to treat over the phone since you're already a patient of his. Or you may want to consider an appt. with the doctor in NJ that I gave you the name of. He has a short wait list and has had success treating many. Someone on the forum here is being treated by him and is very pleased with his care. Just a suggestion. Btw- If you google Bartonella/Lyme and psycotic behavior, I'm sure a lot will come up. They even termed a coin "Bartonella Rage". My daughter has had an excess of energy the last couple of years (adhd like), and since treatment she is now beginning with physical symptoms of the lyme and tick-borne infections. Still has a lot of energy, just not manic - impulsive like. Thinking of you & sending prayers! edit- I took away doctor's name (in Stevensville)-- it's probably best to use initials to protect the privacy of the doctor.

Wilma- my daughter is not as severe as your girl, but she does react to every supplement, abx, vitamin, blood draw, exc...so I get a sense of how difficult it is when treating. We just added vitamin D because she tested low and she reacted to it in one day. We have an entire cupboard of products that I gave up on (I should have a garage sale-lol). I think it would be smart to bring this new info. to Dr. Beals and also keep your appt. with Dr. J. You can always cancel your appt. in September if needed. I would advise not jumping on a lot of products without the assistance of an llmd or doctor. You will probably need to take it slow at first until you lower your daughter's bacterial load, and then hopefully she will react less when adding in new things.

Ifran- I could be wrong, but I think it's difficult to get a positive test result for Bartonella...so if you have a test showing an indeterminate, I would suggest moving forward with treatment. My daughter(9) first tested negative for Bartonella thru Igenex (but positive Bb). We then took her to Dr. J and he uses a different lab (Specialty) to test for Bart. She's tested positive three times since September. She also continues to test positive for RMSF thru Quest (number has gone down, though) and positive for Bb thru Igenex. She is on daily zith, amox, minocin, & tindamax on weekends. We just tried to increase the minocin, but she was unable to handle it so we reduced it back down to original dose.

bumping

Thanks Jodie. I will try the combo. So far Advil has done nothing for relief. She's begging for me to help her. It's constant right now in both legs and arms.