Dr. J in CT (pediatric)?

Maureen21,

   HIs number is 203-772-1123. You may have to leave a msg with the on call service. If they do not get back to you in a timely manner call back, it is an EXTREMELY busy practice. Good luck on getting pregnant! Peace!

Thanks Gretchen and Martha's Vineyard! 

Martha's Vineyard-

Actually lyme disease can cause "sticky blood"?  Is that what you mean?  I had a miscarriage years ago and my last (successful) pregnancy I was on baby aspirin and heparin shots. Not sure if I had lyme back then, wasn't diagnosed and not too sick.

 Will be on baby aspirin and heparin, along with abx. if I am lucky enough to have a good pregnancy. 

Dr. Jones is excellent and you will love him; however, he is hard to reach! If you don't have any luck with his phone number, his fax line is (203) 772-0682 and you can fax him a note and the nurse will get back to you. I found it easier to fax the office than call and leave a message. Good luck! Lisa

I am under the impression that Dr. Jones works with your LLMD to get you on the right treatment. I doubt my OBGYN will know or want to know anything about this.

I'll be lucky if she goes along with me being treated for lyme (have never even mentioned this to her, haven't even seen her since my lyme diagnosis) while I am pregnant. I'll have to talk to Dr. Jones and my LLMD about all of this.

Maureen21 said...
Eric,

I hope you find a good LLMD soon. How long have you been in treatment? Have you ever tried biaxin/plaquenil? That worked really well for me.

hmm.. Well I have been on antibiotics in the past (never tried biaxin/plaquenil) because at first they thought I just had chronic prostate infections because of the constant urination and pain on the right and left sides of my body and in my back. They had me on Cipro 4 different times for 2-4 weeks. Everytime I would go on the Cipro all my Lyme symptoms would be completely better and then it would come back again after. After the 4th time it was no longer effective! Then they diagnosed me with FIBROMYALGIA / CFS and I suffered for 4 years without any treatment besides pain pills. I now finally got diagnosed for Lyme and just recently in the past 3 weeks started antibiotic treatment. Before then I tired the Cowden protocol & rife with little success. I take amox 500 mg 3 times and doxy 100mg 2 times a day. On the Cipro I used to see 80% improvement in just a week!! If they were more aggressive then I probably wouldn't be disabled today. I am well into 2 weeks and I have not gotten any better. I really want to get better so that I can move forward with my life and be productive. I am 27, my 5 year girlfriend the love of my life left me because of the Lyme 2 years ago. I am forced to be single, I cannot work and I have to live in my grandparents basement and I have to stay home all day everyday. I can take methadone and get out once in a while but I hate taking pills like that unless I absolutely have to. I guess i am just sick of being sick and tired of trying things that don't work. I spend all of my money on lyme treatments that don't seem to work and my state insurance will only pay for ignorant lyme illiterate doctors. I don't have any family other then my grandparents (was bounced in and out of foster care growing up) and they are struggling just to get food in the house. I have lost most of my friends because of Lyme. I met my dad for the first time a couple years ago but he could not accept that I was sick especially when the doctors were saying that there was nothing wrong with me so we don't talk anymore.

Post Edited (SickInCT) : 1/20/2009 10:04:27 AM (GMT-7)

I am really sorry to hear your story Eric. Unfortunately, it will take awhile to get better if you have been sick that long. I was on abx. for 17 months and am now 95% better. You can get there!

I still do rife though and I use light therapy, sometimes take herbs, etc.

I am thinking that if you saw so much improvement on cipro and if your initial symptoms involved urinary issues, it could be related to bartonella. Cipro is used for bart. Have you been tested for any coinfections? I really didn't bother with testing for coinfections. I saw the most improvement with mepron/biaxin/plaquenil/bactrim because I was targeting lyme, babesia, and bartonella all at once.

I started with plaquenil/biaxin though and they worked pretty well, but it only brought me to 80%. Once I got up to 95% for months, I decided to try to go off abx, and see what happened. I had just read Cure Unknown and I figured that if my symptoms came roaring back, it would be better to kill the bugs again as they were obviously in cyst form hiding from abx. However, I stayed 95%, so I didn't go back on abx. yet- will when I try to get pregnant.

Are you working with a LLMD now? Who is prescribing the meds for you?

what is cipro? sorry i dont know what this menas? or what it stands for.
thanks
A.

LJ- thanks. i dont think i have ever been on that one. nor has my 16 son. strange...i thought between the 2 of us we had done ever antibiotic known to man!
did it work for you? for what symptoms did you find it helped? i totally understand if you cant answer the question since most of us are on multiple meds at a time so it is too hard to know which one is doing what.
thanks!
alexa

Shame on you Eric...:>)
You are not pregant......lol....this is a mommie post for Maureen....EGB.CT.
I was not away that Dr. J helped mommies to be. But that that would mean that he is a pediatic Dr. and a gyno. And I know he is not both.
I like the Dr. But it took me 4 mos to get my sick child into see him. I know he knows all about kids. But that does not make him a gyno.
These are too very different fields. I would not go that route. It does not sound right to me at all.
That is just my opion and I would not have him monitor my high risk preg. no way.
I will have to ask my Dr. about the "blood" problems while being pregnant.
When I lost my child in MV during the summer. So many of my friends on the vieyard also lost their babies. And the other thing about DR. J is...man he is realy old.
He abx treatment for my 5 year old is not working. She cannot keep all of the abx down. So Envita had seen her here and they have something new that they are going to start her on.

Hey Martha's Vineyard,

I am 36 years old, want to have two more babies (my son is going to be 4 in April).

I am not going to actually be seeing Dr. Jones or using him instead of an OBGYN or a high risk pregnancy specialist. I just wanted to consult with him regarding some questions I have about my antibiotic options.

I am feeling great, pretty much in remission now, been off abx. for almost 5 months. I was on abx. for 17 months straight, but also did (and still do) rifing. I recently also added light treatment. I am planning on trying to conceive around the middle of the year and will go back on abx. before this.

I am glad to hear that you are doing so well now!

iam so glasd to hear you are seeing a lyme doctor before getting pregnant! i had late stage lyme, did IV felt great, really great. a year later i got pregnant and i gave my son lyme disease becausei really wasn't cured. i still was carry lyme. even though i felt great!! i was healthy for years after that first IV but i have since gotten very very sick again. i put my fourth IV in next month. my son is now 16 and it is very sad to see him struggle. i never even knew his problems were lyme until, after all the millions of test( wiht his pedeterion) my new lyme doc said lets test him for lyme and it came up with a lot of positive bands! he is on and off antibiotics. i think it is so deep in him because he was exposed as he was forming as a fetus. and i breast feed him too. just see someone who know their stuff, a really lyme only doc.. it might just save you years and years hard heartache. and there is nothing worse than watching your children suffer! i just started seeing doctor s.j.harris in redwood city and he is amazing!!! better safe than sorry . if we are wrong and you are lyme free, which i hope is the case, all you have lost is an afternoon and one doctor bill. if you are not lyme free and get pregnant you will/could spend the hundreds of hours and 10's of thousands of dollars on care that may, or may not work. i wish the the very best!!! and i am so happy you are doing so good!! take good care of yourself.
alexa