Hopeny

I am so sorry you are going through this. Is your son still on Luvox? I recall you posting that before. Perhaps consider discontinuing as it doesn't seem to be helping. If your son poses an immediate threat to himself or anyone, suicidal or threatening others, emergency care is required. If not then I would try a second opinion at this point. Some options: Dr. Jenike is PANDAS knowlegable http://www.mclean.harvard.edu/about/bios/detail.php?username=mjenike. Mass Gen, NOT to be confused with Boston Childrens Hospital, a definite no-no. If you can't reach Dr. Jenike, minimaxwell on this board may be able to suggest how to. Dr. O'Hara is an integrative MD, she is extremely smart and thorough: http://www.ihealthnow.org/. Not to beat the Lyme drum too many times but steroids can activate Lyme, I think you may have posted that you did a steroid burst so it is something to consider. Since Doxy seemed to help it brings to mind Lyme (co-infections) and Mycoplasma. If it were Lyme personally I would ask for IV antibiotics at this point. I will PM you the name of someone that you may be able to get into more quickly for Lyme and I think he has done some work with PANDAS. I think if you stress the urgency of the situation that you may be able to get in more quickly with any of these doctors. Many of us have been there, it is important for you to stay strong and to keep hope that your son will be well.

With my kids I know they have an immune issue (mannose binding lectin deficiency) so there is no real mystery as to why they got/remain sick. I do think (for no real scientific reason) I had some exposure to Lyme and that this has also further influenced their unfortunate responses, and that there is a genetic predisposition to Lyme. Fortunately my kids have not seemed to have much of a reaction to any vaccines, although I did read through hundreds (maybe thousands) of VARS reports and will never let them get Guardisil which was shown to have immediate negative reactions. I am terribly suspicious though as to why the cluster in the 1970's, why the link with Mycoplasmam, and why the concentration around Plum Island? It seems too much to ignore. After learning an iota about what goes on there, I am really considering moving far away!

Wow your school sounds amazing! Unofrtunately not ours. I got the blank look when I made a few comments about OCD from Strep, I have left it that DD has chronic strep and has issues with it. Since Lyme causes the same issues, and at least they have heard of it, that seems to be "ok" with them. My pediatrician amazingly even wrote "chronic Lyme" on DD's health form so it will be good support for the 504.

Misty at first she went 3 days without any supps and she seemed worse. Then I put back everything and took her off MTHF, the skin picking stopped I think within 48 hours. I put back the tiny dose every other day. This seems to work best for us. I also cut back on D3 a few days later. Things are not perfect but they are much better. In the beginning the MTHF seemed miraculous, but then I guess it was just too much. DD has only one copy 677T. off topic: LLM I am going super slow with Samento, I have read/heard so many good things I am compelled to try it. I am building up a week at a time, starting with one drop this week. Day 3, so far so good. I am trying to use more Burbur and Parsley detox, but spacing out probiotics/antibiotics and samento/detox is not fun. I am hoping to get to 4 drops. I want to take DD off antibiotics for the summer and use only naturals to see what happens. From there, I will consider IV if things go bad. I also bought some Cumanda but I may chicken out of using it. I feel like I can manage the PANDAS flares with abx but I really want out of Lyme

I said I would post an update, I think it's been two weeks but I tend to lose track of time, based on LLM's (thank you) posts I decided to reduce DD's MTHF dose from 5 MG/day down to the best I can approximate <1 MG every other day. Skin picking almost gone. (this had gone almost right away when she started with Dr B and I now realize it crept back around the same time as starting MTHF), anxiety seems much better, OCD blip (getting coat on for school 15 minutes before time to leave) is gone. Friendships, wanting playdates etc up. Even talked to me tonight for more than 2 minutes. I'm seeing a definite difference. I've added an herbal anti microbial this weekend (Samento) for Lyme and after I ramp that up I am going to try upping NAC, we are at 300 right now. I thought NAC was causing problems but now I am thinking not. I'll post updated when we get further with NAC. I also cut down on Vitamin D3, we had a huge amazing difference with it at first but DD's level is up to 60 from 29, and it seems if I give her the 1,000 MG every day it causes some anxiety, so I am only giving a couple of times a week.

Last year when everything fell apart DD was in second grade, I received it must have been at least 40 strep notifications during the year. I wondered if a kid was a carrier. Granted that DD started school late this year (switched back from private), but I have only gotten ONE notification so far. Trying to be a little nosy to see if the other classes had a problem I mentioned it to the nurse (its a new nurse and I have never discussed PANDAS with her) and she told me that she has lots of strep on one side of the school (K-2) and not on the other (3-5) Not that it matters at this point but I am wondering could DD's 2nd grade teacher have been a carrier? Teacher told me she had Lyme but got better (based on her emotional state, and other stuff, she didn't seem better to me ) Or is it just that older kids get it less. Curious about other experiences

Thanks Laura, I did not receive any examples so will check your PANDAS board post. I have struggled with requesting more time for tests. I know that will further complicate the process. DD also has eye blurring etc so she doesn't always see the problems properly. The main reason I was putting one together is for her arthralgia, we are constantly running into her having to explain to subs, PE, etc, that its too painful for her to sit on the floor.

Our integrative told me not to use Florastor because it contains Inulin, I can't recall the reason but it was related to depressing the immune system, some versions of culturelle have Inulin too

I believe Mincocin is in the same class as doxy. You might want to check that out. I just went back on doxy. I hate the stuff, but I'd much rather take it in the winter than the summer. Yeah, I don't know why he thinks the Doryx may not cause the DILE reaction - something about being absorbed in small intestines. I may have gotten it wrong though, we only briefly discussed it. We are considering this at our next appt in 2 months. I forgot about the sun exposure issue though - that would be spring We can't make any changes right now - we are at a last attempt at getting her to school. I really hate this school vs health (treat) decision. I pushed her IVIG back to accomodate the school, and the last few weeks her fixations have returned. Philamom reading your signature wondering if you had your DD's adenoids removed? Also want to add, without insurance preapproval Doxy suspension 30 days was $450, with preapproval $150

I think they are almost the same why does doctor suggest both?

The drop thing always seems a little uncertain so I guess you can use a healthy drop . In doing some research on quercetin I believe it has antihistamine properties, may not be strong enough though. I am going to try 50 mcg. My dd is definitely better with much less.

I googled the Rosemary thing for humans because of the dog history and found a link http://www.epilepsy.com/epilepsy/alternative_oils. I knew Eucalyptus and camphor were a problem but now see all of these can be an issue. I think it just takes a minute amount, it is used as a preservative in dog food. I am pretty surprised that Yasko has it in that supp given the target audience. Hope the EEG goes well.

wow I just finished the Lyme chapter and I am feeling absolutely sick to my stomach. I heard a rumor about this theory, that the governement was testing BB on Plum Island where they test bio warfare types of things (conveniently located near Long Island, NY), and disregarded it. But after reading this it seems entirely plausible. not that it affects treatment, but its just so upsetting. One compelling piece of information/theory is that they were also testing Myco along with BB, and this is why so many people with Bb have +Myco. Actually i am thinking that maybe high Myco is a flag for Lyme... I know the found Bb in the iceman, but why did such an insidious form crop up in the 70's, and why in a cluster in Lyme, etc. Just wondering if anyone had read and had any thoughts...

Hi my DD 9 was on Doxy (suspension for two months). I will say she hated it and it was such a battle. I wish I could get her to take it because I know it is very powerful. When we first tried a 5 day course it was very effective for calming her psych issues. I did not see much effect with the 60 day course either way, and DD's Myco remained high after 6 months of meds My LLMD loves Doxy, he would prefer DD to stay on that. My friends son had a huge recovery with Doxy after 18 months of other meds, it seemed like he had tick recurring fever but now she is also suspicious of parasites as the problems recur every 28 days right at the full moon unless he is on Doxy, and as Doxy as also used for parasites she is still testing to see what is going on. If there are GI issues important to ignore the bottle and take it with food, it definitely can cause upset stomach. It would be a good time to try it now before summer because of the sun issue. DD was fine most of the time and then suddenly got a very bad burn.

My DD was given it for swine flu pre pandas and did not have any issues. However I read that some children committed suicide after taking it I think in Japan so you need to monitor carefully. I believe it works pretty well.

Lmkip there are a lot of financial struggles with theses illnesses, after a year I feel I am finally coming up for air. Lymeaid4kids may be able to help you with the initial flvisut fees. For those who can please consider contributing so everyone can have access to care. I can't imagine what will happen to our kids if we can't get care for them. Dr J was one of the first to recognize that Lyme required antibiotics when others insisted it was a virus. His trouble started as I understand as the result if a phone consult for a child he was trying to help.

Dr. Jones, a pioneer in the fight against Lyme, is being persecuted by the State of Connecticut essentially around his prescribing of antibiotics. I know that many kids have both PANS/Lyme, but more importantly what Dr. Jones is going through puts all of our doctors at risk. He has continued to see patients, never turning anyone away, at great financial peril risking bankruptcy due to huge legal bills and legal monitoring requirements. he is at risk of evicition, and there is a call for donations online or by mail. Please consider helping Dr. Jones so he can continue to treat our kids and also as a precendent that we will not let this happen to any of our doctors that are courageous and confident enough to help our children. I know Dr. J shares many patients with Dr. B. and I am sure other PANDAS doctors. Read the story online here or more below:http://www.indiegogo.com/JonesAppeal. Thank you From: Phyllis Mervine <phyllis@mervine.us> Subject: [NewYorkLyme] Dr. Jones in serious financial trouble To: ConnecticutLyme@yahoogroups.com, "Maine Happy Dickey" <cdickeyrn@midmaine.com>, MaineLyme@yahoogroups.com, newhampshireLyme@yahoogroups.com, RhodeIslandLyme@yahoogroups.com, "RI Rick Laferriere" <rlaferriere@gmail.com>, MassachusettsLyme@yahoogroups.com, "New York Lyme" <NewYorkLyme@yahoogroups.com>, vermontlyme@yahoogroups.com Date: Monday, January 28, 2013, 7:06 AM January 28, 2013 Dear Friends, First, I want to thank each and every one of you who responded to my last update by donating to my legal defense fund.Your generous response helped to reduce the outstanding balance, preserving my legal representation.The hearing before the Connecticut Supreme Court is expected to take place early this year.That proceeding is not able to accommodate a large audience, but I promise to keep you posted on the outcome! Unfortunately, a very serious financial crisis is hitting my office which I must bring to your attention.As you know, my office has been under an enormous amount of stress for many years, due to the charges brought against me by the Connecticut Medical Examining Board (CMEB).In addition to huge legal fees and fines, the imposition of four years of monthly monitoring has posed an enormous burden, financial and otherwise.The monitor had to be hired through an agency, and his fees have been astronomical, averaging $4,000 per month. This would be bad enough, but it also takes a great number of clerical hours to prepare each patient chart according to the specific and detailed format that he requires.This must be done by an experienced staff member, familiar with my practice.Due to the demands of the practice itself, she often has to do this after hours, resulting in overtime costs of about $2,000 per month. When I first learned of the monitoring requirement, which was unusually stringent in terms of both its frequency and duration, I feared that it could drive me into bankruptcy.As a result, I have had to make some difficult modifications, to reduce our operating costs and keep the office open.For example, we have reduced our staffing from 5 to 3 medical assistants, very challenging for all of us, given the high demands posed by our very ill pediatric patients.I work 6 days a week seeing patients.I had hoped to train another pediatrician by now who would assist at my office and become my successor, butthis has not been feasible, due to the adversarial climate surrounding my practice. My attorney has petitioned the CMEB on at least one occasion, requesting that they reduce the monitoring requirement.The monitoring agency supported this request because the monitor has found no problems with my practice, but the CMEB denied it.Some of my colleagues have set up a fund to try to help with these costs, for which I am very grateful, but this has not been sufficient. Despite these challenges, we were managing to break even financially until Hurricane Sandy hit, followed by a significant snowstorm.Patients, unable to leave their homes, had to cancel their appointments, and we saw almost no one during a two-week period.The loss of revenue, approximately $36,000, was devastating, and the office has been unable to recover financially. We have had to pay the monitor throughout this difficult period, in order to avoid my being held in contempt by the CMEB.As a result, I have fallen seriously behind in paying rent, salaries, utilities and more.I have been told by my building manager that if payment is not forthcoming by February 1, the corporation which owns my building will begin eviction proceedings. ** *In a nutshell, I am experiencing a financial crisis, and I will be forced to close my practice unless I am able to raise $40,000 within the next few days.*It pains me deeply that a great number of patients and their families could be left without adequate care, and once again to have to turn to you for assistance.Any sum will be appreciated, but it must arrive at once!I will do my best to keep you apprised of the situation, including the point at which our goal is reached.At present, I regret that we do not have a Paypal option, but I will let you know if that changes.Please make your checks out to me and send them to the following address: Charles Ray Jones, M.D. 111 Park Street, 1^st Floor New Haven, CT 06511 (please write "gift" in the memo field) I want to assure you that my practice continues to be busy and I am seeing new patients, often on a daily basis.I was deeply touched by a recent letter from an adolescent patient, who had just returned to school after years of illness.She wrote:"Thank you, Dr. Jones, for healing me."I cherish as always the opportunity to treat so many children with tick-borne diseases and to witness their return to health. I am encouraged too by the fact that the monitoring requirement, burdensome as it is, is now more than halfway completed.That is a light at the end of the tunnel, and will make a tremendous difference in the longer-term financial stability of my office.To achieve this however, *we need to overcome the immediate crisis!* Thank you for your attention and support. If we are successful in meeting the current financial challenge, I pledge to continue to do all that I can for our children with tick-borne diseases! Sincerely, Dr. Jones Charles Ray Jones, M.D.

I have been reading about SAM e. I wonder if anyone has tried it.

Llm I just saw that methyl mate has rosemary in it. We had a dog that actually developed seizures from rosemary in food so I completely avoid it. I am going to try the Thorne version. I need to read all of your posts and get my head around this. My dd has LOW glututhiaone as i recall from testing so I need to think through all of this and discuss with Dr O on our next consult.

LLM has posted pretty extensively on this and there is lots of good info on the board if you search her posts. Her advice per her research and Yasko was to start very small, if I recall 400 MICROgrams. I was giving DD (9, 67 pounds) 5 MG and it seems it may have brought back compulsive skin picking. After reading the most recent posts on this I dropped down to less than 1 MG and skin picking greatly diminished (maybe 80-90%) gone. my DD has 677T one copy. My advice would be to go LOW....

double hmmm, just posting an update since approx 1 week I have lowered the dose to the best I can approximate 1 MG insteaad of 5 I have seen a HUGE (maybe 80+%) reduction in skin picking which was one of DD's original compulsions that began when DD's mess started, went away and came back due to what I thought was Rifampin but now I am suspicious was maybe too much MTHF-5. DD also seems to be less anxious about getting to school, has been sitting in kitchen with coat on 15 minutes before start time again since around starting MTHF (again I attributed to Rifampin/Bart) and on Friday I actually had to tell her it was time to go. Must be extremely powerful stuff!

Hi someone posted this link and I think it would make an excellent piece to bring to the doctor http://www.ocfoundation.org/PANDAS/ My 3 YO gets OT and has lots of sensory issues too. Also had croup 8 weeks ago and now coincidentially my older daughter has Lyme/PANS and we are trying to figure my 3 yo out. I hope your ped helps but you probably need a specialist. Sorry we are in the northeast so I can recommend anyone in your area. What is therapeutic listening?

Llm dd refuses to swallow anything, has to be suspension, drops or powder in a smoothie.

Are you sure it's not an allergic rxn due to rash? Our integrative said to use charcoal and burbur for detox/herx. Burbur seems to help but we are also dealing with Lyme . I won't even attempt to get dd to take the charcoal, good luck

That's good about the rashes and foot pain which can be signs of Bartonella which Rifampin treats. Lyme is EXTREMELY complicated and can be very hard to diagnose, it is generally made as a clinical diagnosis with supporting information from tests. We don't see Dr. T but from what I have read he is not an "LLMD" (neither is our PANDAS doctor or any of them as far as I know, so this is not a comment specifically about Dr T, its the specialty in general). PANDAS docs seem familiar with Lyme but don't really know how to read the tests, even if they do use Igenex or Stonybrook labs. Your son's extreme lethargy was a flag for me for Lyme, cannot recall if he had joint pain or not. At some juncture it would be good to get an eval by an LLMD to be thorough. A good response to Doxy could also be Mycoplasma, but the response you are seeing to me would also be a Lyme flag. Doxy does not touch strep. I do not pretend to understand this article but this psychiatrist is in Red Bank, NJ, not sure where you live. http://www.ilads.org/ilads_news/2012/robert-c-bransfield-md-the-psychoimmunology-of-lymetick-borne-diseases-and-its-association-with-neuropsychiatric-symptoms/ He might also be a good resource for you as someone who is knowledgable about treating psychiatric conditions triggered by medical illness, Lyme or otherwise. We have not seen him (too far for us) but our LLMD recommended him and I know he is widely respected. Good luck