About

About the Group: You can reach us with questions anytime at info@pghlyme.org, on facebook at pghlyme or by posting a comment on the blog. If you want discussion, you may want to consider joining one of the many state-by-state mailing lists (depending on your location ([StateLyme]@yahoogroups.com, e.g., PennsylvaniaLyme@yahoogroups.com)). If you’re from the Pittsburgh area, you can join a Yahoo Groups mailing list called PittsburghLyme@yahoogroups.com.

About the Authors:

Jennifer Mankoff: I started this blog to share what I was learning about Lyme Disease as I experienced it. I’ve also written up a short history of these experiences. I created this at the urging of a friend because so little information is available about lyme, and what little there is tends to fall into one of two “camps” that are diametrically opposed to each other. I have spoken to numerous doctors in both camps and done a lot of reading myself, and while I am no expert, my opinions fall somewhere in the center of those two camps. I will do my best to present a balanced view point and provide pointers to resources from both sides so that anyone reading this can draw their own conclusions just as I have.

The tag “lyme-war” will lead you to posts where I specifically describe this controversy. My links page also points at external resources on each side of the wars.

Caveat: I am not a doctor, and nothing written on this site is meant to represent medical advice. I am simply describing my experiences, my opinions and so on. Use at your own risk.

Bill Moore:  I was sick for many years with Lyme before being diagnosed.  I am haunted (and motivated) by the thought that if any one of the many doctors I had seen during these years were educated on how to recognize and test for Lyme, I could have avoided years of illness.  Lyme is much easier to treat if diagnosed early, and can be avoided entirely with proper precautions.  So this motivates me to get involved with Pittsburgh People with Lyme disease and do my best to educate people about Lyme Disease, and provide support for those suffering with it.  I’ve also written up my full Lyme story.

 

15 thoughts on “About

  1. Hello! I’ve been reading your blog and am reaching out to tell you about the community around Lyme disease we are building on Trusera.com. The heart of our business is two basic ideas. The first is that it is way too hard for ordinary health consumers to find credible health experiences. This comes directly form our founder’s experience with Lyme, which took eleven doctors (and one email from a friend) to diagnose. You can read Keith’s story here http://www.trusera.com/users/storyguy/stories/the-bite-that-changed-my-life?.

    Right now, I am reaching out to leaders and advocates in the Lyme community and would like to talk to you about how you could help spark this resource for those with Lyme. Seems like you are someone who holds our belief in sharing resources and creating access to actionable information.

    Please let me know if I can send you an invitation via email to the site.

    Warm Regards,

    Tara

  2. I found your site by tracing a referral to LymeBlog, News and Personal Stories of People with Lyme Disease, from this site. Thank you for the link.

    I have created some banner ads linking to this site on LymeBlog. We now have over 5 million readers. I hope this will help more people find you.

    Feel free to share your story there in a LymeBlog and include a link back to this site if you wish.

  3. I am also not a doctor. My son is setting up a site for me to post my experiences from the last 5 or 6 years. I also had neuro lyme/babesiosis. I thank you for your blog as it will provide me something of a template to present the information in a much clearer manner than I would have otherwise. Thanks, Ann

  4. Hi,
    I doesn’t look like there are many recent posts, but I just wanted to add my experience. I had Mono to start which sent me into chronic fatigue. My immune system was a mess. My sister who contracted the Epstein Barr(mono) virus 8 years prior, and had her own chronic fatigue story, suggested I be tested for allergies…wow I was allergic to everything! Found some relief from a chiropractor turned nutritionist… And just when I was feeling a bit better, got Lyme…..Symptoms back and I was again not feeling well with fatigue, memory problems, etc, and then had Asthma symptoms setting in…
    I have now healed from both Lyme and Chronic Fatigue..as well as seasonal – food- and environmental allergies. My gall bladder attacks a long standing ailment before the immune system crash — is gone! no more asthma, I am one happy person to feel so good again.
    It took me about 5 months to rid myself of the Chronic fatigue and Lyme and about another 1 1/2 years to clear up everything else. That was nearly 10 years ago!
    I did it through Advanced Cell Training which was so new then it didn’t have a name! And was a one man office. But what a life saver. I just got bitten by a tick again so am going back for a tune-up to get more treatments to be sure I don’t get sick like I was before.
    It works. And has worked for my family and friends. If you can think outside the box, (I thought I’d lost my mind to try this.. surprise it worked!) and are willing to try something cutting edge… then this is for you. If you are looking for conventional… please don’t try ACT.
    Wishing you the peace that comes with good health!

  5. Hi I am a journalism student and I am currently constructing a blog about Lyme disease. I couldn’t find a way to contact you directly so I hope you don’t mind me leaving my message here. I was wondering if I could ask you a few questions about your blog. I would like to know more about what it is like becoming a public figure with Lyme and what your experience has been having a very public forum to discuss your journey with the disease. If you are interested please e-mail me Lyme.girl@hotmail.com

  6. Hi-
    I LOVE your blog. You are intelligent and articulate and I have found so many of your posts enlightening and informative. I have added your blog to my “blog roll” on my own lyme blog as a favorite. Hope that’s ok.
    I was having a very hard, depressed “lyme” day recently and came to your blog and it cheered me up and made me feel less alone in this struggle. Keep up the great work, and thank you for sharing your story in such an honest, informative way! lymiemame@earthlink.net

  7. TEST AFTER TEST…. A HUGE NEED TO VENT:(

    The most recent ultrasound results found more than just the one thyroid nodule that was found on the CT scan.

    There are 3 nodules all together. Impression – multinodular goiter.

    The only thing now is to correlate all this with the nodes found in the neck on the CT, (no US was done on the neck) but CT showed jugular chain, bilaterally

    front and back nodes and one occiptical node, and under the chin, submandular and submental region which I have read is not a good sign.

    The first time I had any tests done was an ultrasound on my breasts after 2 mammograms and they found 2.7 cm lymph auxillary tail nodes and said to come back next year that it was nothing to worry about.

    Now it seems I have them everywhere! The Pelvic US showed the same thing many, many cysts

    and a 13mm on ovaries ct showed inguinal nodes under 12mm. I’m just one big nodule/cyst!!!

    And then if we travel up to my heart I have the stress test and ultrasound results of a right branch bundle block, left ventricular regurgitation,

    persistent <100 heart rate, which I do not feel and can not explain this to any doctor! and 2 scars found along with myocarditis

    which I have had the infectious doctor ask me if I ever had a heart attack or did a lot of coke when I was younger!! negative on either!!

    I will start treatment for the Lyme for 28 days of rocephrin iv (30 minutes a day) I had a horrible reaction to metronidazole given to me for what they said was pelvic inflammatory disease which came back negative for STD's

    (after scaring me to death all weekend on that!) now they say I must have Polycystis ovarian Syndrome. I took 4 a day while continuing to take the doxycillin and Ceftin, doctors orders, and nearly ended up in the hospital!

    I have since quit taking all pills just so i can feel a little life in me again. I sleep until 3:00 pm usually on the weekends.

    I just turned on the water for a nice hot bubble bath and went to get my pj's and got side tracked, eneded up forgetting I was going to take a bath and if it weren't for my son I would have flooded the bathroom! my kids think I have compltely lost my mind…

    I forget everything. My boss showewd me an email I sent to ther today..it was pitiful, I almost cried on the spot (not hard to do that now a days) Most of the words were fine,

    but several others were just a mixture of jumbled up letters that couldn't even be made out to make any sense. What am I going to do?

    Now I am wondering if this is contagious to my children, fiance, and should I get rid of the pets, and why are there infected ticks in these woods around my house?

    and why can't the county come out and take care of that like they come out and spray for mosquitos??? I live in a small town,my mom is a hair dresser, she had 3 customers come in since I have been sick with the same syptoms as I (most of them) and no one can tell them what is wrong with them.

    calling the health dept. doesn't help, they said there was only 7 cases reported in this county last year, no big problem, please!

    I am so sick of hearing everything is ok because it is clearly not! My boss is talking about short term disability until I get better, but I can't afford 60% of my pay and really do love my job!

    Hoping for the best for all of us, but still freaking out in Florida

    Krissy

  8. Just saw this post. As i read this i remembered a friend who have experienced this kind of disease. At first she just thought that it just a simple infection. She used a lot of ointments and creams to treat the wounds. Then someone told her to see a doctor and finally she found out that it was a Lyme disease. Good thing now she’s well. Thank you for posting this one and all the best for you.

  9. I’m a huge fan of your page since I suffer with Lyme myself. Recently I started working on a project called HealClick that connects patients together based on shared medical details.

  10. Hello

    I work with a doctor who has recently written a book about his struggle with Lyme Disease called. He is a traditionally trained physician, but found the medical community’s treatments for his illness lacking, so he developed his own. Would you possibly be interested in writing something about the book on your blog? I’d love to give you an advanced copy if you’re interested.

    Thanks so much for your time.

    Sincerely,

    Alex Granados

  11. I am from the Pittsburgh area and have a father who was diagnosed with Lyme in the early 1980’s. He had done rounds of IV antibiotics and about 7-8 years ago was bit by a tick in Virginia with Lyme. This had caused him a lot of pain and his activity level diminished. He recently read a book that changed the way he has treated Lyme which is with an herbal regimen. This has been very helpful for him. Anyways, I hate seeing my father go through this, as I see so many others. I wanted to bring more awareness to the area since so many people get diagnosed each year. This is something that has been on my mind for a few years ago. I wanted to do a 5k walk/run and try and get this disease the attention that it deserves. I have no idea how to get something like this started, but wanted to work with a group that could possibly help.

    Thanks!

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