laurenjohnsonsmom

http://hamptonroads.com/2010/09/eastern-shore-doctor-faces-probation-over-lyme-disease-cases'>http://hamptonroads.com/2010/09/eastern-shore-doctor-faces-probation-over-lyme-disease-cases Published on HamptonRoads.com | PilotOnline.com (http://hamptonroads.com) Eastern shore doctor faces probation over Lyme disease cases A doctor on the Eastern Shore known for treating people with Lyme disease has been put on indefinite probation by the Virginia Board of Medicine and permanently banned from prescribing narcotics. The action is the latest in a string of medical cases involving prescription painkillers, and it's also the latest salvo in a national controversy about the treatment and existence of what some refer to as chronic Lyme disease. Dr. Geoffrey Gubb, who has a family practice in Belle Haven, was accused by the board of treating 15 patients with high-powered pain drugs while failing to monitor their condition or properly document diagnoses. Gubb, 73, has until Oct. 16 to ask for an appeal on the matter. If he declines, the order will become final that day. In an interview last week, Gubb said he has decided to close his family practice at the end of the month. He said he treats about 800 patients, most of whom are from Virginia, Maryland and Delaware. About 600 of them have Lyme disease, he said, and many crossed the Chesapeake Bay Bridge-Tunnel from Hampton Roads to get a type of treatment that most doctors refuse to prescribe because it goes against recommended guidelines. Lyme disease is a bacterial infection transferred to humans through the bite of an infected deer tick. Symptoms vary but usually include joint and muscle aches, headaches, fatigue and fever. Most mainstream scientists and doctors say the disease, which is on the increase, can be cured with antibiotics in less than a month. But there's a group of people with long-term health problems who call their condition chronic Lyme disease. And there's a small group of doctors, including Gubb, who believe that in some cases the bacteria slip into the bloodstream and produce an ailment that can come and go, and linger for months or years. These doctors advocate and prescribe long courses of antibiotics. Because of the ongoing pain symptoms, they say, narcotics also can be part of the treatment. The Infectious Diseases Society of America and the American Academy of Neurology, however, say that there's no scientific evidence to support this theory, and that the prolonged use of antibiotics and prescription painkillers is dangerous. Spurred in part by an investigation by the Connecticut attorney general, the infectious disease society appointed an independent panel to review its treatment guidelines for Lyme disease. In April, the panel concluded there was no scientific evidence to support the prolonged use of antibiotics. Further, the panel said, symptoms attributed to "chronic or persistent Lyme disease," such as fatigue and cognitive problems, are seen in many other clinical conditions and are also common in the general population. "It would thus be clinically imprudent to make the diagnosis of Lyme disease using these nonspecific findings alone," the panel noted. Dr. Edward Oldfield, chief of the infectious disease division at Eastern Virginia Medical Center, said diagnosing a condition that the society doesn't recognize is troubling on several fronts. One is the risk of misdiagnosis. The person's symptoms could be caused by conditions such as cancer or lupus, and a misdiagnosis would delay treatment. Prolonged use of antibiotics also can lead to side effects such as nausea and IV infections. Also, there's the cost of a treatment that scientific evidence has not shown is effective. "It's not that these people do not have real symptoms, but that medicine does not have a solution for them," Oldfield said. The guidelines were criticized by groups that advocate the long-term treatment, such as the International Lyme and Associated Diseases Society. In Connecticut, where Lyme disease was discovered in the mid-1970s, a law was passed last year allowing doctors to prescribe long-term antibiotics in treating "persistent Lyme disease" without fear of sanctions from state health regulators. Earlier this year, the National Capital Lyme and Tick-Borne Disease Association asked state legislators in Virginia to pass a similar bill. The bill, however, was passed over in committee after concerns were raised about whether the measure would lead to treatments that could mask - or cause - larger health problems. "It's very disturbing to see clinical guidelines based in scientific evidence politicized," Oldfield said. More than 100 supporters, however, showed up at a February hearing in Richmond on the matter, saying they must travel hours to find treatment for what they call chronic Lyme disease. Some said they live in fear that their doctors will be put out of business by medical regulators. One key difficulty with Lyme disease is that the blood test used to diagnose it is not always conclusive and is riddled with false positives. In some regards, the condition has similarities to fibromyalgia, another mysterious pain ailment that can be difficult to diagnose. Some critics regard these conditions as psychosomatic, at least in some cases, another frustration to those who suffer from chronic pain. But the diagnostic fuzziness also provides an opportunity to abuse prescription painkillers, a problem one federal agency estimates has surged by 400 percent during the past decade. Board of Medicine documents show that Gubb had prescribed narcotics for periods ranging from seven months to more than two years, failed to develop treatment plans, and in some cases did not examine the patient. In one case, a patient had received narcotics prescriptions from other health care providers during the same period. In another case, Gubb prescribed narcotics by telephone. Gubb said he has changed his record-keeping and taken a class in pain management. He also has "weeded out" people he believes were abusing painkillers. "Pain treatment is a basic human right," he said. "Undertreatment and nontreatment of pain is malpractice, so you're damned if you do and damned if you don't." The case came to the board's attention, Gubb said, after a Maryland pharmacist reported him when filling a prescription for one of Gubb's patients. He said it was the second time he's been investigated by the board. Gubb and his lawyer, Michael Goodman, said they are still reviewing his options regarding the Virginia board's action. However, Gubb said he has already told his patients with Lyme disease he is closing up shop. One of those patients, 45-year-old Lisa Lane, had been seeing Gubb for more than three years. She said she'd been struggling with pain and fatigue for about a year before that, and a client of hers suggested she see Gubb. He diagnosed her with Lyme disease and put her on IV antibiotics and prescription painkillers. She moved from Newport News to the Eastern Shore to be nearer to him, so she was upset when she found out he is no longer able to treat her. She ran out of pain patches a week ago. "I wake up in the night screaming in pain," she said. Lane said she believes hers is one of the cases cited in the Board of Medicine investigation that led to Gubb's probation. "They say it's because of him writing the scrips, but I think they are persecuting Lyme doctors." Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@ pilotonline.com

Hi Kara, Will you send me the handout as well? I tried to send you a PM but it's not working?? You can send it to info@pandasresourcenetwork.org or PM me and I'll give you my personal email address. Mucho Gracious, Lynn Johnson

http://www.facebook.com/l/b9572;titancast.titantv.com/p/wcbi/s/WCBI-News--5-Part-2-81910/12GI1ZP6.aspx WCBI News @ 5 Part 2 8.19.10 - WCBI A Monroe County couple never dreamed their 7 year old daughter's battle with strep throat would lead to a range of behavorial and emotional problems linked to a rare condition. WCBI's Siobhan Riley reports on how the diagnosis was just the beginning of a long journey to recovery.

My youngest daughter (dd11) manifested with severe weather fears at the same time Lauren manifested with her sneezing tic last fall. Audrey has always presented with ocd/irrational fears, etc (no motor/vocal tics). She will get very worked up even when the sun is setting (she thinks the color changing in the sky is a storm and everybody's going to die)! She will work herself to the point where she will physically vomit! Reassurance is the only way we try to deal with it. It always signals us when she does this and her body imagining that she is sick or has been exposed to "something" (chirping like a canary). I'm sorry you're also going through this but I am comforted to know there's somebody else out there experiencing the same thing.

Ooops! Sorry, didn't realize my mailbox is full. Just cleaned it out!

Your right about the PCR test and needing to be off antibiotics but most PANDAS docs (including Dr. are now ordering the 6050 test (complete lyme panel). This panel tests for Western Blot pplus PCR testing so...if you are doing igenex testing and are on antibiotics or cannot go off anttibiotics than do test 4090 instead. I might add the 4090 runs $260 and the 6050 is $485 We ran the 6050 complete test on the girls and wasted $225 (actually we will spend another $260 repeating the test) because they were/are both on high dose antibiotics, not to mention the results are considered invalid on the pcr (Igenex will give you a 15% discount if are testing more than one family member at a time). I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFAs are all ok . Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.

Ok, I'm going to throw in my two cents...(and post this same response to two different threads going in the same direction).. It is speculated that the band 41 is a cross-reactive band as Madeleine Cunningham confirmed this "speculation" during our phone conversation last week. I know Lyme is considered a "contributor" to many cases of PANDAS. It is of interest to the many great doctors and researchers who are trying to help our PANDAS children. Just like Lyme is an infectious agent that can cause an auto-immune disease like MS (my own personal battle) why is it so hard for some to comprehend/agree that Lyme can also contribute to PANDAS? P.mom-it sounds like you went through h*ll and back trying to understand and treat what was inflicting you. I'm sorry you had to go through all of that and still struggle. Personally, trying to get my arms around this chronic nuero Lyme that I'm diagnosed with is difficult. I believe diagnosing and treating chronic Lyme is much more a mystery than PANDAS. I do want to reply regarding the bull's eye rash and tell you that according to the Lyme Research Center's website (Dr. Fallon) www.columbia-lyme.org says.. "In about 60-70% of cases, a rash may develop at the site of the tick bite. This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a spider bite. In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present. In these cases, the only symptoms may be marked fatigue and flu-like symptoms. Given that fatigue and flu-like symptoms may often arise from other causes, Lyme disease may not even be considered in the differential diagnosis and the patient may suffer for many months with an unrecognized, untreated infectious illness. Late Disseminated Lyme Disease. If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling. I hope this information is helpful to you and others. This is an EXCELLENT website to get accurate information regarding Lyme. I love this forum when it offers friendly emotional support to others struggling but get discouraged when folks start debating known medical/scientific information. Why don't we rely on the LLMD's and the many great websites like Dr. Fallons research center for the facts on Lyme and call it good! Unfortunately how Lyme plays a role in PANDAS and other auto-immune disorders is still very much unknown. I know without a doubt I have Lyme (and soon will probably have a MS diagnosis as well now that my MRI is complete). There is no absolute concrete research/scientific evidence that Lyme infection is one of the infectious agents that can cause MS B-U-T the Lyme docs will all tell you that they believe it to be true. They are learning from us going through this ordeal. It stinks that we are navigating mostly uncharted waters. We want clear answers for Lyme, MS, mycro, PANDAS etc..as how they relate to each other but we don't have clear answers. I think what has made SFmom/Wendy so successful with treating her children is the same formula we used in successfully treating Lauren. We thoroughly ruled out possible co-infections and treated the infection(s) FIRST (rather it be strep hiding in Laurens sinuses and/or treating the strep that infected our whole family). Using antibiotics and steroids we treated/weakened the chronic infection that caused Lauren to be so ill for the entire year (2009) and more than likely contributed to her blood brain barrier breach last fall (oct 2009) causing her extreme PANDAS manifestation/sneezing 25,000x a day. Once we beatthis infection down in her (but possibly did not fully eradicate it) we went in with the IVIG to "hit the ball out of the park". This is why I think my daughter is so well/functional (98%) now. Do I think my daughter may have/had a Lyme infection as well-ABSOLUTLEY! We will ever know for sure-PROBABLY NOT! (because she had/has so many different antibiotics for so long not to mention 3 ivigs Im ok with that). I believe Laurens BBB was due to many contributors, the perfect storm . I remember when we first started posting her in the beginning of our battle, it was Faiths badgering me about the vaccines that Lauren recently had prior to her PANDAS manifestation that led me to believe that the vaccines were one of the contributors to Laurens BBB along with the possibility of Lyme/H1N1/strep/stress and other factors. There were lab tests that ruled in/ruled out some contributors/infections but for the most part we were dealing with a clinical diagnosis and we believed in the doctors who believed this was PANDAS and followed their advice knowing that they are also learning as we are going along, doing the best that they can to help us. We worked together to get Lauren and know the rest of our family well. Like Wendy/SFmom we will leave no stone unturned. Even though our children are functional due to the measures we have taken to get them there, we all know that for most of our PANDAS children, they were normal one minute and were gone the next. Im not convinced that we have won this battle BECAUSE (I will say it one more time, again). UNTIL WE FULLY UINDERSTAND WHAT CAUSES PANDAS WE WILL NEVER UNDERSTAND HOW TO FULLY ERRADICATE IT (I stole that last phrase from Dr. B but he said I can have it because I like it so much)!! Ok, now be nice with your comments, dont be hatin, this is only my two cents!

My standard western blot/Elisa tests (three of them over the last 6 months) all came back negative (I was on 500mg of azith during the first two). The third western blot test (also negative) was drawn the SAME day as the IGENEX testing! momofgirls, you are "spot on" with yor explaination why so many are testing negative/CDC explinaton. You GO girl! People need to understand (and should read the "Cure Unknown")! it explains a lot!

Tell Buster I'm going to email him the demographics/density map comparing Lyme deaths and MS deaths-SCARY! You can layer the two on top of each other and they're are identical. Hmmmm...

Ok, I'm going to throw in my “two cents”...(and post this same response to two different threads going in the same direction).. It is speculated that the band 41 is a cross-reactive band as Madeleine Cunningham confirmed this "speculation" during our phone conversation last week. I know Lyme is considered a "contributor" to many cases of PANDAS. It is of interest to the many great doctor and researchers who are trying to help our PANDAS children. Just like Lyme is an infectious agent that can cause an auto-immune disease like MS (my own personal battle) why is it so hard for some to comprehend/agree that Lyme can also contribute to PANDAS? P.mom-it sounds like you went through h*ll and back trying to understand and treat what was inflicting you. I'm sorry you had to go through all of that and still struggle. Personally, trying to get my arms around this chronic nuero Lyme that I'm diagnosed with is difficult. I believe diagnosing and treating chronic Lyme is much more a mystery than PANDAS. I do want to reply regarding the bull's eye rash and tell you that according to the Lyme Research Center's website (Dr. Fallon) www.columbia-lyme.org says.. "In about 60-70% of cases, a rash may develop at the site of the tick bite. This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a “spider bite”. In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present. In these cases, the only symptoms may be marked fatigue and flu-like symptoms. Given that fatigue and flu-like symptoms may often arise from other causes, Lyme disease may not even be considered in the differential diagnosis and the patient may suffer for many months with an unrecognized, untreated infectious illness. Late Disseminated Lyme Disease. If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling. I hope this information is helpful to you and others. This is an EXCELLENT website to get accurate information regarding Lyme. I love this forum when it offers friendly emotional support to others struggling but get discourage when folks start debating “known” medical/scientific information. Why don't we rely on the LLMD's and the many great websites like Dr. Fallons research center for the facts on Lyme and call it good! Unfortunately how Lyme plays a role in PANDAS and other auto-immune disorders is still very much unknown. I know without a doubt I have Lyme (and soon will probably have a MS diagnosis as well now that my MRI is complete). There is no absolute concrete research/scientific evidence that Lyme infection is one of the infectious agents that can cause MS B-U-T the Lyme docs will all tell you that they believe it to be true. They are learning from us going through this ordeal. It stinks that we are navigating mostly uncharted waters. We want clear answers for Lyme, MS, mycro, PANDAS etc..as how they relate to each other but we don’t have clear answers. I think what has made SFmom/Wendy so successful with treating her children is the same formula we used in successfully treating Lauren. We thoroughly ruled out possible co-infections and treated the infection(s) FIRST (rather it be strep hiding in Lauren’s sinuses and/or treating the strep that infected our whole family). Using antibiotics and steroids we treated/weakened the chronic infection that caused Lauren to be so ill for the entire year (2009) and more than likely “contributed” to her blood brain barrier breach last fall (oct 2009) causing her extreme PANDAS manifestation/sneezing 25,000x a day. Once we “beat” this infection down in her (but maybe did not fully eradicate it) we went in with the IVIG to “hit the ball out of the park”. This is “why” I think my daughter is so well/functional (98%) now. Do I think my daughter may have/had a Lyme infection as well-ABSOLUTLEY! We will ever know for sure because she had/has so many different antibiotics for so long not to mention 3 ivig’s-PROBABLY NOT! I’m ok with that. I believe Lauren’s BBB was due to many contributors, the “perfect storm” . I remember when we first started posting her in the beginning of our battle, it was Faith’s “badgering” me about the vaccines that Lauren recently had prior to her PANDAS manifestation that led me to believe that the vaccines were “one” of the “contributor’s to Lauren’s BBB along with the possibility of Lyme/H1N1/strep/stress and other factors. There were lab tests that ruled in/ruled out some “contributors/infections” but for the most part we were dealing with a “clinical diagnosis” and we believed in the doctors who believed this was PANDAS and followed their advice knowing that they are also learning as we are going along, doing the best that they can to help us. We worked together to get Lauren and know the rest of our family well. Like Wendy/SFmom we will leave no stone unturned. Even though our children are functional due to the measures we have taken to get them there, we all know that for most of our PANDAS children, they were “normal” one minute and were “gone” the next. I’m not convinced that we have “won” this battle BECAUSE (I will say it one more time, again). UNTIL WE FULLY UINDERSTAND WHAT CAUSES PANDAS WE WILL NEVER UNDERSTAND HOW TO FULLY ERRADICATE IT (I stole that last phrase from Dr. B but he said I can have it because I like it so much)!! Ok, now be nice with your comments, don’t be hatin’, this is only my “two cents”!

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued.. I also want to mention that when you call IGENEX lab they will tell you to NOT take the IGENEX testing while you are on antibitics! They suggest going off them for 10 days.

My error...Lauren will be having ivig every 8 weeks (I accidently typed 4 weeks on the earlier post). Between Lauren's PANDAS and my lyme, I am starting to confuse myself-sorry!

I had the western blot test done three times over the last 6 months with all negative results. The last time I had it done was the same day I had the igenex test done. I personally feel the western blot testing is just a false sense of security and that Lyme likes to hide! You also are supposed to be off all abx when you take any Lyme test (as so I'm told when I called and inquired with igenex). Lauren's igenex tests came back on the grey area and she was on abx (we didn't know any better at the time) so we're still going down that path. Audrey's were just sent in last week and I am being tested for confections as we speak. I suspect Lyme could be a player in my sons case as I have pulled more ticks off him then I care to count BUT (what we do know) is that all three of my children had strep less than 10 days before we took my son in for his first emergency psyc eval back in Sept/Oct 2006. Hmmm. Strep and Lyme?? We'll never know for sure.

Lauren's total IgG levels fall within the "high abnormal range", Lauren had low titers on the pneumonococcal vaccine (the vaccine didn't take on 11 of 14 serotypes) and she suffers from chronic illness/infection (she was sick/absent from school 26 days over several months prior to her sneezing manifestation last October). Most insurance companies require one to three of these to approve ivig/prove immunodeficiency. We have the perfect "trifecta"! (maybe we should be betting on the ponies to help cover our uncovered pandas/Lyme expenses)!!!

Ajcire, I have had weakness in the legs along with numbness, pin & needles etc. that manifested during the last trimester of my pregnancy with Lauren over 13 years ago. It was passed off as "baby pushing on a nerve" throughout my subsequent pregnancy with Audrey who was conceived 13 months after Lauren was born (I might mention the issues were still present during the year between my pregnancies). Long story short, I continued to have these issues and at times throughout the years I wound have episodic manifestations where these issues would worsen (once I had my entire right side of my body go numb-dr thought I had a stroke, etc.). One other time I woke up to having no feeling in my feet/could not walk). Our family (being military moved 11 times over these 13 years so between the moves and raising three children mostly by myself as my husband was off serving our country, I put this on the back-burner for years). There were three occasions in the last 13 years that I took the time/had an episode that could not be ignored and I had an MS work-up but never saw anything significant on the MRI so I kinda convinced my myself that this was all in my head (even though I had multiple emg's that came back showing significant nerve damage to both legs with no reasonable explanation). Fast forward to March 2010..my purse is stolen with my eyeglasses in it. Because I was overdue for my eye exam and I needed to replace my eyeglasses I decide to go to an opthamologist instead of my normal optometrist as I felt my vision decreasing over the last few years but when the optometrist did my normal eye exam I was always told that my mild prescription had not changed. Well..the optometrist discovered eye polar which landed me an appt with the neuro opthamologist who diagnosed me with optical neuritis in my left eye (this is why I had blurred vision for so long). He immediately suggested it was MS (current issues plus past history) BUT Dr. B was not convinced. As the neuro opthamologist pressed forward with the MS work up Dr. B ran list of labs and the igenex testing. Well my igenex Lyme testing lit up like a Christmas tree-multiple positive IgM bands (and IgG as well). Because of the severity of my symptoms and the results of my igenex testing Dr. B and I are working with a LLMD near Dr, B's office an I will be seeing specialists (including a neurologist) at Columbia as well, in a week. This has kept me traveling back and forth to CT and NYC but is far worth it to figure out what's going on and hopefully eradicate this from my body for good, I have been told by the LLMD that I am deep into the rabbit hole with this and that he is convinced this has progressed into MS cause by undiagnosed/untreated Lyme (he said Lyme is one of the infectious agents that can cause MS). He gave me some impressive research and other info if anybody on this forum wants to see it-PM me and I will email it to you! I had to sign a waiver agreeing that the treatment regimen we're doing can increase my symptoms and that I might go blind or paralyzed (temporarily or permanently) during this treatment and that I understand that there is demolition of my central nervous system. As I type this I am on day 4 of 100mg of doryx 3x day. I will double this in 10 days and I already started herxing yesterday. I was in the grocery store and I started getting this "tingling" sensation in my arms, hands and fingers. The feeling you get when your foot falls asleep but much worse. Like a numbing, tingling almost burning sensation. Also in my legs (especially back of my calves). Even my tongue and bottom lip was "numb/tingly". I'm assuming this was herxing. It did subside about 60% but it's still an issue. Now today my blurred vision has greatly increased making it virally impossible to type this response. The LLMD told me he thought I could definitely benefit from the anti-inflammatory effect of IVIG and we are moving towards that soon. Still working out the fine details regarding dosage/frequency. We have excellent insurance that covers IVIG (we are blessed) but we have spent a fortune already on the "we don't bill insurance" doctors visits and travel expenses. I hope I answered all your questions. Lynn Sent from my iPhone

Norcalmom, Did the PANDAS doc who did the first ivig discuss possible subsequent treatments? In our case Dr. B is treating the autoimmune issues and this treatment protocol works for us. Every child and every doctor is going to probably approach diagnosing and treating PANDAS (Lyme or both, etc). a little different. I believe the key is finding a good doctor (immunologist) to thoroughly "investigate" the root cause of the problem (looking at the whole family for clues as well). Someone that will continue to care for your family beyond ivig for years to come because in our case, even though Lauren is doing amazingly well we don't know what tomorrow (or next week or next year) will bring. We continue to do 1.5g/k (3x now). Starting in October Lauren will have this dose every 4 weeks. We did retest Lauren's camk scores just before ivig #2 and saw drastic improvement in her scores!! I hope this is helpful for you. Good luck and keep us posted on your progress.

There are lots of Lyme literate docs in the NE but few treat children. Good luck on your search and please keep us posted on your progress..

Kimballot, I couldn't agree more. Infectious disease causing autoimmune disorder. Rather it be Lyme causing MS or Lyme causing BBB (PANDAS). It all makes sense to me...

We just completed Lauren's 3rd ivig last week. Besides some anxiety issues still remaining I am happy to report Lauren is 98% functional. Her sneezing tic and eye flicker are gone. I will say we had problems with her briefly flaring with tics when she is exposed to viruses/bacteria but for the most part is doing great! We will continue ivig every 8 weeks starting first week of October as Lauren is immundeficient and we are trying to keep her well. I also may be doing ivig for my chronic neuro Lyme...to be continued

Life is… Mother Theresa Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.

THANK YOU Buster for clarifying this so accurately through documented sources! (black and white)! Maybe I'm just feeling overly "cranky" today but I am SO sick of people who twist "black and white" and try to make it look like so many shades of grey!!!! There are so many "unknowns" within PANDAS as it is why waste our time debating over the few things we do know. (how do you make one if those frustrated/screaming smiley faces, again)????

Alex, Agreed. As a mother of a child who is functioning well after 2 IVIG treatments (better than 87% in my opinion)and heading toward our 3rd IVIG in less than two weeks I too am interested in knowing when Dr. K states IVIG treatment is successful in >87% of those treated are we to assume he followed up thoroughly with ALL the patients he administered IVIG to get that % and if so how long were they followed? I'm not try to "rain on the parade" because obviously we believe IVIG is effective or we wouldn't be doing it b-u-t just like plasmapherisis, you hear often from parents that it was very effective, immediately after treatment but than some children go back to having issues (maybe because they are re-exposed to a virus or bacteria and the body goes back to attacking the brain and not the virus/bacteria)??? Someone I very much admire said to m e recently.."If you see something miraculous happen once-It's a miracle, If you see it twice-It's interesting, If you see it three times-PUBLISH IT! Dr. K has teated more PANDAS patients than probably any doctor in the world presently so he's got a pretty good idea of "the recipe that works". Just like other auto-immune diseases they are chronic so when IVIG is effective the length of effectiveness depends on many variables and I'm assuming that differs from one child to the next. I am looking forward to the YALE/NIH study that is beginning soon to be an actual "documented study" and not an "observation" so it may solidify what D. K an many of us already know, that IVIG has significantly helped our families find healing. Lynn

Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around. Anybody else manifest on that timeframe??

Vicki - unfortunately, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors. Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval. That is exactly what I mean! Graduate students, lots of them designing surveys under the supervision of University Drs. as their thesis requirement. But who is actually teaching/supervising with the interest? I would think Dr. Leckman's students are too advanced. Diana is collecting some data of those who have contacted her, but again, I think people are sharing their stories and some specific info is being pulled from that. I'm not sure, perhaps she will chime in. Certainly that is an overwhelming task on one mom. I know patience is the hardest word to hear when your children (and your family) is suffering but if you look at where PANDAS was just 6 months ago we have accomplished lots ("we" meaning the parents/doctors and researchers). I can personally attest to how much time and effort it takes to add or update one small area of our website (not to mention the cost). There are tons of initiatives that a whole handful of driven parents (most who are forum members) are working on while treating their PANDAS children and most working full time jobs. It all takes time (and patience). These PANDAS docs are also working around the clock, doing the best job they can with what little they know about this disease. There's never enough time at the end of the day to compile research/data but they understand the importance and what happened over the last few days was just the beginning. I remember LLM posting a thread a while back summarizing the recent accomplishments in the PANDAS world and the list as long and impressive. Thanks LLM! Call me the optimist but only good can come from these recent meetings/conference. I think we should celebrate and look forward to the road ahead. I am confident, we will keep moving forward, one step at a time, and we will conquer this disease! Have you (((hugged))) your PANDAS doc today???

I used to be on "that" mailng list (which I've heard is commonly refered to as a "fan base") b-u-t for some reason I must have fallen off of it! Guess I'm not c L Enough! (I just love those smiley faces)!