philamom

I'm just curious - are we talking mycolpasma IGM or IGG? I get conflicting advice on whether elevated Igg needs to be treated? If Igg, do they feel it's a chronic, persistent mycoplasma infection? I know Igm means current infection. thx

Home | News | NEWS: Clarification on new Lyme culture test NEWS: Clarification on new Lyme culture test 16 September, 2011 Font size: Click Above to Share ArticleNews that Advanced Laboratories plans to release a blood culture test for Borrelia has ignited lots of interest in the Lyme community. Apparently these tests will be available within the next several weeks in all states except New York, California, and Florida. (Those states require a longer approval process for lab tests.) What follows is an update from the lab, answering a number of questions that have been raised recently. Press release from Advanced Laboratories: BORRELIA CULTURE UPDATE September 15, 2011 There has been a great deal of interest in our Spirochete/Borrelia culture test, and we appreciate that. In order to help answer many of the questions posed, we thought an update would be in order. The most frequently asked questions are addressed below: • Advanced Labs is a CLIA and COLA certified reference lab that offers a variety of quality tests for the detail oriented clinician. AL consists of two divisions--the clinical laboratory and the research lab. • At the clinical division we focus on both basic as well as advanced testing, including hematology, chemistry, urinalysis, serologies, immunology, cytometry, PCR and histopathology. We also are known for the creation of customized testing panels designed to meet the needs of a busy practice. • The research division supplies a pipeline of new testing services to the clinical lab after they are fully developed. Our soon to be released Borrelia culture is an example of this. The methods involved in this culture are complex and proprietary and are still a trade secret, but many details will be outlined in upcoming publications. • We are finalizing the Spirochete/Borrelia culture test and hope to have it available in most states in the coming weeks. • When the test becomes available we will provide supplies for blood draws directly to physicians' offices and possibly to some private labs. We ask that interested patients contact their doctors in order to be tested. There is no initial charge for the blood drawing supplies, and these supplies can not be sent directly to patients. • In terms of pricing we are aiming for a price under $500 for the basic test; extended culture tests will be approximately $200 more. • Testing must be paid for in advance, but patients may submit their paid receipt to their own carriers for reimbursement. We appreciate your interest in Advanced Labs and look forward to being of service to you and your patients. Thank you again! Advanced Lab 501 Elmwood Avenue Sharon Hill, PA 19079 www.advanced-lab.com questions@advanced-lab.com Here is the original press release announcing the new test: PRESS RELEASE Sharon Hill, PA, September 5, 2011 BORRELIA CULTURE NOW AVAILABLE TO EVALUATE LYME DISEASE PATIENTS Research breakthrough promises a new Gold Standard in Lyme Disease testing Lyme Disease blood testing has been notorious for its unreliability This has been responsible for misdiagnoses and inappropriate patient care, as well as confusion on the part of both patient and physician alike. Now, as a result of intensive research, Advanced Laboratory Services Inc. is able to offer what will rapidly become the new gold standard of Lyme tests, the Borrelia Culture. Until now, the most widely used confirmatory tests for Lyme disease have been serologies. Being indirect tests, at best they can only indicate possible exposure to this organism at some previous point in time. It has been variously reported that the sensitivity of these assays is low and may miss anywhere from 30% to as many as 70% of cases of Lyme. Once positive, these serologic tests tend to remain positive for variable periods, even years, even after treatment. Therefore they do not and cannot be used as a marker for progress during treatment or for success of treatment. In addition, some acute viral infections may potentially give a false positive result. How are most other infectious diseases diagnosed? Traditionally, a culture is taken to see if an infection is present, and if so, what specific bacterium is causing it. Unfortunately, because Lyme Borrelia are symbionts, meaning that they need a living host to survive, trying to get them to thrive in vitro has been a nearly impossible task. In addition, they are noted for their very slow growth. Because of these difficulties, Borrelia culture until now has not been available to clinicians. Advanced Laboratory Services Inc. is proud to announce that they have overcome many of these technical difficulties and is able to offer Borrelia cultures. While still considered investigational, the new methods employed allow these advantages: • By definition, culture is a direct test and if positive, indicates that an infection was present at the time the specimen was taken • Cultures may be positive even in a patient who is seronegative • In theory, any fluid or tissue that is infected can be cultured • All known strains of Borrelia burgdorferi sensu lato can be detected • When combined with PCR and DNA sequencing, the exact identity of the Borrelia can be ascertained • Advanced methods have the promise to increase yield and decrease turn‐around time • Culture positivity fulfills even the strict CDC surveillance case definition • Will become the new Gold Standard for laboratory testing Currently, Advanced Labs is offering two Borrelia blood culture panels. The Basic Panel consists of culturing, with confirmation of identity by histology and by specific immunostaining. The report, if positive, will include a picture of the actual immunostained culture result. The expected turnaround time for this is approximately ten to fourteen days. However, some do grow more slowly, so all cultures will be held in the lab for a minimum of six weeks. We also offer the Extended Panel. In addition to histology and immunostaining, the identity of all positive cultures will be further studied by polymerase chain reaction (PCR) and by nucleic acid sequencing. These extra steps will generally require an additional ten to fourteen days. However, if the initial histology with immunostaining is positive, a preliminary report will be issued while the nucleic acid studies are pending. Bb culture nuts and bolts: • Sensitivity exceeds 80% if the patient is symptomatic at the time of blood draw and not on antibiotics for at least four weeks • All negative controls have remained negative so far • As with all blood cultures, may need several sets to be sure Any positive test is significant, even if it is the only positive out of a set of three We have found that the success of culturing Borrelia can be increased by following these simple recommendations: • The patient should not have been exposed to any antibiotics, even those not known to affect this organism, for a minimum of four weeks prior to the blood sample being drawn. • Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling. • A higher yield may be seen if the blood is drawn in the early afternoon, when most infected patients feel especially ill.

Her RMSF (IGG) is still elevated - but went from 1:256 to 1:64.

A new tick-borne disease that may be stealthily infecting some Americans has been discovered by Yale researchers working with Russian scientists. The disease is caused by a spirochete bacterium called Borrelia miyamotoi, which is distantly related to Borrelia burgdorferi, the spirochete that causes Lyme disease. B. miyamotoi has been found — albeit relatively rarely — in the same deer tick species that transmit Lyme, and the Yale researchers estimate that perhaps 3,000 Americans a year pick it up from tick bites, compared with about 25,000 who get Lyme disease. But there is no diagnostic test for it in this country, so it is not yet known whether it has actually made any Americans sick. The same short course of antibiotics that normally cures Lyme also seems to cure it. In Russia, where a team in the Siberian city of Yekaterinburg developed a test that can distinguish miyamotoi from other tick-borne spirochetes, it caused higher fevers than Lyme disease typically does. In about 10 percent of cases, the fevers repeatedly disappear and return after a week or two. The study by the two teams is to be published soon in the journal Emerging Infectious Diseases. Since the disease was only recently discovered, it is unknown whether it does serious long-term damage, as untreated Lyme disease can. The Yale medical school researchers — Durland Fish, an entomologist, and Dr. Peter J. Krause, an epidemiologist — have recently won a grant from the National Institutes of Health to study the symptoms and develop a rapid diagnostic kit. Dr. Fish found B. miyamotoi in American ticks 10 years ago, but was repeatedly refused a study grant until the Russians proved it caused illness. “It’s been like pulling teeth,” he said. “Go ask the N.I.H. why.” The discovery will no doubt add to the controversy surrounding Lyme disease. While most Lyme victims are cured by a two-week course of antibiotics, some have symptoms that go on for years and believe they have persistent infections that the antibiotics did not reach. Most medical authorities, including the Centers for Disease Control and Prevention and the Infectious Disease Society of America, take the position that “chronic Lyme disease” does not exist and that those victims either have other illnesses or are hypochondriacs. They oppose the solution demanded by some self-proclaimed victims: long-term intravenous antibiotics. Dr. Krause said it was unlikely that the new spirochete could be responsible for chronic Lyme, because the symptoms do not match: Most of those who think they have chronic Lyme complain of fatigue and joint pain, not repeated fevers. But he said doctors might consider the new infection, especially in patients who think they have been bitten by ticks, come up negative on Lyme tests and have recurrent episodes of fever. B. miyamotoi does not appear to cause the “bull’s-eye rash” that helps doctors diagnose Lyme disease, the Russian team found. “People shouldn’t panic,” Dr. Krause said. “And they also should not jump to the conclusion that we’ve found the cause of chronic Lyme disease. It’s not highly likely, but it’s possible. We just don’t know.” The miyamotoi spirochete was discovered in Japan in 1995. It was at first believed to be limited to those islands. In 2001, Dr. Fish found it in about 2 percent of the deer ticks in the Northeast and Upper Midwest and proved that mice could pick it up from tick bites.

Okay. Thank you for clarifying.

Fantastic!!! I like seeing the term "PANS" now being used. I also like the info. on how to swab properly. I can't tell you how many times my daughter didn't flinch with her swab - where's the gag??

My daughter is also IGG positive for both types EBV, HHV-6, and CMV. I don't think Parvovirus B-19 was ever run - what is it?

eljomom- I just want to add that last summer when we ran our initial Igenex test - it wasn't suggested by any of the 3 PANDAS specialist we saw. I decided to ask our ped to run the Igenex test after reading up on lyme. Also, we didn't get the exact results we expected from our daughter's first two IVIG's. It was positive, so we then made the decision to see an LLMD, who added on one additional antibiotic for the positive lyme result and ran a slew of blood tests (most covered by insurance). It wasn't until the testing came back with additional tick borne co infections that my daughter was placed on another antibiotic to effectively treat them.

eljomom- I meant to respond earlier to your post (sidetracked) about your daughter's knee - it is possible that could be behind the increase of tics (blinking) right now, even if doesn't look infected. Could have provoked an immune response. I know my daughter reacted with an increase of symptoms a while back when her earring got embedded in her ear. It didn't look too bad but it stirred up some symptoms.

But I don't understand how you can figure out who is a pure pandas case! -- until there is a test, I guess. (I'm not talking lyme,mycoplasma,exc) So many don't have positive throat cultures or rise in aso/dnase, so do you go by clinical picture? But then my daughter was coined "classic pandas" by her clinical picture before we found lyme. You can't go by Cunningham's labs -- my daughter was elevated in every marker. Not starting an argument - just thinking out loud. :-)

Sorry...I disagree. How can you tell if you are dealing with a true PANDAS (strep only) case? throat cultures, aso/dnase, Cunningham's test, tourettes, = there is no definitive way. And even if you are dealing with a PANDAS (strep) case, I still feel steroids will be helpful for some, but not all. I think it depends on many things, like the infection load, were you on abx prior... When my daughter had a PAN sinus infection in 2008, also the beginning of her third PANDAS (or PANS) episode, she was placed on 7 days of steroids and 21 days of Augmentin. After a slight flair of the PANDAS symptoms she was great. It put this episode into remission (or 90%). Then 7 months later she was in another PANDAS (or PANS) episode. Her ped did a round of Amox & Duricef (duricef put her 2nd episode into remission) with no affect. A month later we did a 5 day steroid burst with Dr. k and it made my daughter psychotic. I was about to have her admitted to the hospital when I called my daughter's ped and put her on speaker phone. The ped told me they would most likely take her from me for 4 days which terrified me. My daughter was running around screaming and banging her head into the walls because her OCD (steroid increased it) was driving her crazy. Fortunately, in the midst of my dd's screaming and crying, the ped heard her small cry "please mommy help me - don't send me away" and was able to diffuse the situation. After an hour of sobbing, she fell asleep. Meanwhile, I started with severe chest pains and had to go the doctors. I thought I was having a heart attack. It was just from all the stress. Why the difference in outcome from the steroids? Dr. K said that sometimes the second one is no longer successful? Again, the first one was given for a sinus infection, not PANDAS. Plus, I was told after the steroid burst that my daughter was "classic" PANDAS, but 14 months later we found out we were dealing with Lyme as well, so steroids would not be in her best interest. Of course, I would use them if absolutely necessary. Anyway, I just think every case is different, PANDAS or not. My opinion though.

interesting about the oat bran - keep's the stools moving?? Hang in there!

Ifran - and I'm sure he'll thank all of you! What supplements are you using these days? thx

Since its only been a few weeks since the strep/fifth disease, would she be willing to prescribe another round of antibiotics while waiting for the test results? Is there any way to change her mind?? Maybe you could bring her some articles (in the pinned section) on the importance of treating with antibiotics right away. I am so sorry!

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year. But the best LLMD is always worth it in the end. I personally went to the only 2 that are within a 2 state radius for me and I live in texas . There is no one here. But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean. So far it has worked. I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory .

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

Baylor- I have a family doctor in our area (philly suburbs) that would be willing to prescribe abx and run labs under the direction of a PANDAS doctor. Send me a pm if you are interested. He takes insurance and no wait! And he's extremely nice - great with the kids!

Let me know what you find our re: costs. DH is headed to an integrative MD in a few weeks for chronic fatigue etc. Had a tick bite last summer before we knew the nastiness of lyme. Our GP only gave 2 days of doxy initially and then after I kept nagging for a week, gave another two weeks. So an Igenex basic panel is less than ideal for him. He hasn't been on abx, so a culture is very intriguing if affordable. Will do! I called today to order a kit (like the article mentioned) but was told at this time it needs to be ordered by a physician. I was hoping it would be like Igenex where you can order the kit yourself to take to your doctors office. I was asked for my doctor's info which threw me off guard - I didn't know which one to use (lol). So I opted for our DAN doctor, and when I got off the phone I quickly called their office to tell them they would be receiving a call or shipment of a kit for a new lyme test. I'm pretty sure they thought I was cuckoo! So hopefully, this goes somewhere. 2 days of doxy!?!

back to the question at hand - I would consult with Dr. B whether 10 weeks (instead of 8) would make much of a difference. Rgearding IVIG- my dd's first one was in Chicago in June 2009. She went on to have six more with Dr. B since April 2010. I will pm you to share our experiences. Good luck this week!

And of course there's still the co-infections. I think I will call to inquire for myself.

WOW - Thanks for sharing. That is a bummer about being off antibiotics for 4 weeks .

Thanks a bunch Nancy! I'm praying with some medical intervention that we won't need much in accomodations. If not, I'm afraid we are heading to a repeat of second grade when we had to pull her out for more than half the year due to school & work refusal, along with PANDAS (or PANS in our situation).

To be honest, I have no knowledge of what 504 plan is other than knowing it helps with accomodations. I assumed you had to have a doctor write it up. Someone here was kind enough to forward me a copy but I wouldn't mind seeing some others as well. It was recommended that I start with a letter signed by a doctor as a first step, and I agree. I plan to address it with my daughter's Immunologist. As far as how to handle the accomodations, do I need to list them in the doctor's letter? Or should I draft another letter? Do I work with the school to determine the accomodations? Yes, I'd really appreciate any advice!

Can only give you our experience with bee venom. Son had sore knee so we tried it on there but the burning was too intense (should have read the directions better because when it starts to burn it is time to massage the area which helps). He only would try it once. I have a knuckle on my right hand that swells up if I use it too much (i.e., gardening) and it gets red and swollen. Put that bee venom on there one night and woke up to a knuckle that looked almost normal. All the redness was gone and most of the swelling. It says on the tube we bought ($50!) that to get good results you can use up to 14 days. Have used it several times since then on my hand and it works really well. Interesting and varied uses for it too. That's right - I do recall asking about it before. So, it may not be best for arm & leg tingles since I would need to apply it all over?? Unless I used it right before a cool bath .

I'm interested in the bee venom ointment - how does it help?