KaraM

Talked personally to Sen.Joan Lovely at an event the other night. I believe another rep to contact is Mike Costello (D) Newburyport. He is on the joint committee of financial services. http://www.malegislature.gov/people/profile/mac1

If I remember correctly, our first appoitment was close to two hours (for each child). Obviously, he is brilliant or we wouldn't all be trying to go see him. But he is also very gentle, slow moving and a little hard of hearing. So be patient and speak loudly! Logistically. When you arrive, go in and get a parking pass of the door and put it in your car. They usually have urine sample cups and forms out for you to complete. They do all the bloodwork necessary right there, so that is convenient. They have a small t.v. with videotapes in the waiting room as well as some books and puzzles. The office staff, while a little abrubt sometimes, is actually very accomodating with the kids in the waiting room. We've had visits where he's been right on time and others where we've had to wait up to 45 minutes or so. So be prepared to wait, just in case. If you want to stay over night, I recommend the Suites at Yale-New Haven. Great accomodations. Not a lot of bells and whistles outside of the rooms, but the suites themselves are top notch with a very large, well appointed living/cooking/eating area and a separate bedroom with two queen beds. The price when we stayed there was $99/night. http://www.ynhh.org/visitor-information/suites_at_ynhh.aspx Good luck!! Kara

Thanks, LLM. I agree it's pretty objective. I still REALLY have trouble with so much emphasis on the abrubt, overnight onset, since it did not happen that way for us (or at least that we could see...she may have been hiding stuff). Our dd's built over the course of a few months until it became clear something was very wrong. On a different note, it has been almost two months since she stopped her antibiotics (after three years). Knock on wood, still doing great!! Kara

Thanks, I found a few things too, on Bart being in ticks. I think my question should be refined to ticks transmitting it to humans. I'll check out the website you gave me. I am asking because there is a reporter about to do a series on Lyme that asked me about my family's experience. When I mentioned Bart, she said all her research showed ticks did not transmit Bart. I got the impression she did not want to go in that direction, although she said she would have to do more research. I thought I might be able to find something that would be helpful. There is something mentioned on lymedisease.org about a mouse study. I'll look into that one more too. Thanks again.

Does anyone know of any researchnstudies that show Bart is found in ticks? Thanks, kara

Sorry - the title of this post is incorrect. I should read June 8. I edited the content, but I can't figure out how to edit the title to read 8 instead of 6.

HI Everyone, We set a date for the next meeting when we met on Saturday. Saturday, June, 8 from 2:00 - 3:30 8 Front St # 305 Salem,MA Kara

Bumping this up. The meeting is tomorrow. Let me know if you have any questions. Kara

Are there any labs that report on all of the bands related to Borrelia besides IgeneX? Does Stonybrook? Thanks, Kara

When I had my CD57 done, it was just one value, not a percent, so I'm not sure how to read those numbers... I have no idea how long I've had Lyme, but have to say I've had different symptoms come and go over the course of several years. So for example, in my 20s, I thought I was getting arthritis in my hands...couldn't open (preivoulsy opened) jars, etc. But at some point it went away on it's own. My vision changed around the same time to the point I needed glasses. That need disappeared as well at some point. I used to wake up at night wanting to rip my skin off about 7 years ago...that went away on its own as well. At one point, maybe 15 years ago, the bottom of my feet would be very tender when I stepped on the floor in the morning. That went away on it's own. These are things that lasted for several months, may even years...but eventually just disappeared on their own. I have a myriad of other symptoms (anxiety, brain fog, fatigue, etc), that have all ebbed and flowed at different points that could always be blamed on life circumstances. My point is, that yes, symptoms can come and go and morph. I'm happy to say that once I started treatment a year ago, lots of other things improved. I didn't start Rifampin until this past September. That did a bit of a number on brain fog in terms of herxing. I felt like such a dunce. That lasted about a week of so. I finally feel like I have an IQ of at least 100 now. Compared to the past, I feel brilliant . Kara

Just PMd you about Dr. H. in Watertown, MA

Our next support group will be held on April 6th 2-3:30 Location: 8 Front Street # 305 Salem,MA 01970 I would love to know if you are coming, but an rsvp is not required. Kara

Our next support group will be held on April 6th 2-3:30 Location: 8 Front Street # 305 Salem,MA 01970 I would love to know if you are coming, but an rsvp is not required. Kara

Lisa, After finding Lyme and coinfections in my two kids, doing research and learning about all the symtpoms, I was tested myself. Low and behold, I had/have it too. As with you, blamed it on age, hormones, working mom, etc. etc. I've been treating for about a year now. Huge difference. Depression, hip pain, anxiety, cognitive functioning have all improved dramatically...enough that I felt comfortable taking on a new job that has some pretty big expectations. Good luck to you. If I can help in any way, let me know (but please read my post on the PANDAS page about Stopping abx with Dr. J's blessing...if you want a quick reply, shoot me an email). Kara

Still doing o.k. I don't know if I'm being overly sensitive to everything...we had a minor tantrum over homework...could have been attributable to hunger. We've had a few bloody noses (something that I've always wondered was a symtpom for her). Some baby talk...could be age regression. But really, overall, she still seems to be doing fine. NO OCD. No depression. The one minor homework tantrum (and that's a strong word...call it loud frustration) is the closes thing we got to a rage. I feel really bad that I have not been on the board lately. Just checking in here and there... But one thing her healing (and mine) has allowed me to do was GET A NEW JOB!!!! I've been swamped. But it's all good. (Just feel like I'm neglecting my online friends). Please, for those of you who know our history and are staying more active than I am on the board, let any newbies whose symptoms mirror my dd's know they can contact me and I'll do whatever I can to help. I believe my settings allow for emails to me. Kara

After three years, the last several months of which have been thankfully quite normal, we are finally stopping antibiotic treatment for dd10. We stopped earlier in the week. Dr. J. said if a relapse were to occur it would typically happen within the first couple of weeks. So far so good. I'm still keeping a very close eye out, though. We are still keeping ds13 on meds. But he started treatment long after her... Please keep your fingers crossed for us. Kara PS: posted on PANDAS board, too. I think most here read both, but I don't know that's true for everyone...

After three years, the last several months of which have been thankfully quite normal, we are finally stopping antibiotic treatment for dd10. We stopped earlier in the week. Dr. J. said if a relapse were to occur it would typically happen within the first couple of weeks. So far so good. I'm still keeping a very close eye out, though. We are still keeping ds13 on meds. But he started treatment long after her... Please keep your fingers crossed for us. Kara

I highly recommend the Suites at Yale New Haven. They are well appointed, clean, spacious. There is a large kitchen/living area and a separate bedroom with two double beds. When we stayed there last summer it was $99/night. http://www.ynhh.org/visitor-information/suites_at_ynhh.aspx If I remember correctly, the first visit is a couple of hours long. Follow ups are usually an hour. We go to him every four months. Kara

I have not even had a chance to read this, but wanted to let everyone know this long awaited report has been released. PANEL: EXPLORE INSURANCE, EDUCATION, HUNTING CHANGES TO TACKLE LYME By Colleen Quinn STATE HOUSE NEWS SERVICE STATE HOUSE, BOSTON, FEB. 28, 2013…..Lyme disease is a much bigger problem than reported cases indicate, necessitating a statewide public education blitz to prevent transmission, along with more awareness in the medical community and mandatory insurance coverage, according to members of a special commission charged with investigating incidences of the tick-borne disease. The Department of Public Health (DPH) receives 12,000 to 14,000 positive reports annually, but the commission believes the number is “grossly underreported,” said Rep. David Linsky (D-Natick) who chaired the 21-member panel that worked for more than a year and released its 35-page report Thursday. The report says sufficient clinical information is obtained to classify about 2,000 to 4,000 confirmed cases and up to 1,000 probable cases, buy says DPH estimates a five- to tenfold underreporting for Lyme. Physicians do not report every case of Lyme Disease they identify. “We need to let people know just how prevalent Lyme disease is in Massachusetts. This affects so many families,” Linsky said. State funding for advertising should be provided to the Department of Public Health for education campaigns, money Linsky said he will push for during the upcoming budget debate. He said he did not know say how much money is necessary, but added DPH could not take on any new responsibilities without additional funding. School districts also need to become aware of ways to reduce risks and protect children on playgrounds, commission members said. Lyme is a bacteria spread by the bite of a blacklegged tick. There may be a “bull’s eye” rash, a red spot at the site of the bite. Early symptoms are similar to flu with body aches, chills, fever, headache, muscle pain and stiff neck. The report called on the state pesticide bureau to look into spraying to control ticks and to explore whether to require each mosquito control district to expand their work to include tick control measures. The commission also recommended exploring expanded crossbow hunting and changes in archery safety zones with an eye towards controlling the deer population, carriers of Lyme-transmitting ticks. The commission also recommended the Department of Conservation and Recreation find options to reduce tick habitats. Doctors also need education on the three stages of Lyme disease, along with current treatment options, commission members said. In addition to calling for mandatory insurance coverage, the report recommends spreading the word in the medical community that guidelines Lyme treatment are based on limited data, that recommendations regarding antibiotic treatment of patients with persisting or relapsing symptoms are based primarily on the results of one clinical trial, and reminding physicians of a law that protects doctors from facing disciplinary action should they choose to diagnose and treat according to clinical criteria. When it isn’t recognized right away the disease becomes more serious. Improved laboratory diagnostic methods are also necessary, according to the commission’s findings. Once thought of as a disease primarily on the Cape and Islands and in rural areas, Lyme disease now affects people in every city and town in Massachusetts, Linsky said. Full report: http://www.malegislature.gov/Content/Documents/Committees/H46/LymeDiseaseCommissionFinalReport-2013-02-28.pdf END 02/28/2013 Serving the working press since 1910 http://www.statehousenews.com

Bumping this up in response to the recent post about CD57...hopefully you find it helpful. I have to re-read it myself to refresh my Lyme impaired memory .

If you need to stay overnight...Yale new haven suites are walking distance, really nice and only $99. They are only for people there for medical reasons.

Ditto on Hopeny's reply. Here is an article which I think is helpful as well: http://naturalnutmeg.com/?p=1000 Kara

Has anybody heard anything?

He co sponsored the bill today!! And he'll talk with some of his colleagues as well!!

Here we go again...hopefully they don't look to Children's Hospital for expert advice. http://www.salemnews.com/local/x1746083240/Mysterious-hiccups-hit-Essex-Aggie-students