About Me

Updating:

5/4/2013

Its been a long time since I updated our Lyme Journey. And wow. In so many ways, not much has change in almost 3 years. It’s pretty depressing, if I let it get to me.
Caitlyn’s remission ended  twice. At one point, we think she was re-infected in 2011. Then she seemed to get better to only have a total relapse in December 2012. She is currently taking Rifampin, Tindamax,Minocycline, and Artemesia, plus probiotics for Lyme, Bartonella and Babesia duncani.
Scott seems to be holding, but Lyme and HHV6 Viral titers are still quite high. He takes Valtrex and Doxy every day.
Gary– well, same old same old, only worse? He had done another 6 month round of IV abx as well as all of his other meds. he is mostly housebound due to pain and constant nausea.
Me- well, I am hanging in as best as I can. I recently tested positive for Babesia too. That is a new one for me, and I am being treated for Bartonella even though I haven’t tested positive for that. My LLMD is basing that on clinical observations- meaning I have all of the symptoms except the skin rashes. I might need treatment for Rheumatoid Arthritis because my RH factors are getting higher and higher. We don’t want to do that at the moment becasue it would most likely involve steroids which is bad for Lyme and immune issues.

Basically, its a mess. I wish I had a better update. I do have Hope.

7/23/2010

I got a few very nice comments and emails from other Lyme Disease sufferers. I thought that I would update my family’s progress. My daughter has now been symptom-free for 8 months! She has been completely off of antibiotics and herbal supplements for almost 4 months. I am thrilled to see that you can get better! The rest of us have our good days and bad.  Scott is doing much better without the stress of waking up early for school every day. I am feeling better now that the school is  not calling me daily either. Gary is pretty much the same. Our LLMD told us that he is most likely “in it for life.” But I am not going to give up hope that at some point he can have a more “normal” life.

There is so much new research coming out in the Lyme community that I am sure that at some point, hopefully not too far in the future that the doctors will have better answers and that the medical and health insurance communities will finally accept this disease as it really is, once and for all.

~~~~~

So you want to know more about me. Well, I have to admit, I am complex but up front if that makes any sense. I have a lot going on in my life.

I am a mom to 2 kids, married to a great guy. One small problem- all four of us have chronic, late stage Lyme disease. Let me tell you, it is not fun being the care taker of an entire family who is chronically ill- especially since I am one of them.

I try to keep my sense of humor in spite of it all. I have a wonderful online Family at Oscraps.com who keep me going. And I have a Lyme Support group at Healingwell.com

I live in NJ- home to bears and – you guessed it- ticks. The ticks scare me way more than the bears do.

I tend to be pretty outspoken on issues that mean a lot to me, so be prepared to hear rants as we get closer to the General Election.

Please leave comments- I love to hear what other people think whether it is in agreement or not!

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10 responses to “About Me

  1. Hey there I have Lyme as well, chronic late stages, I wanted to introduce myself and say you seem to be such a lovely person. I’m so sorry to hear how all four members of you family are sick. My thoughts and prayers are with you and would love to chat and share ideas some time. Have a good nite:-)

  2. so sorry to hear about your family’s illness. you must be one hell of a strong woman. i was tested for lyme desease a fwe years back but i was diagnosed with fibromyalgia. i know it isn’t half as bad as your illness but i too have really bad days. rain, menstral cycle, forget about it. i can’t move. i was thinking about trying to go on disability but then my dh had a heart attack and almost died. all his organs were failing. etc. ugh! jan. was the month from hell. 2008 is the year from hell. he had to have 7 of his toes removed because his circulation was so bad. he is still out of work. enough about me. i don’t know you but i will say prayers for you and your family. you seem like such a beautful person and one tuff momma. best of luck and don’t stop… keep on living.. tears in my eyes… keep strong…
    carmen

  3. Hey! My mom and I also have Chronic Lyme Disease. I was recently diagnoised, and started treatment on January 1st. I thought that was a fitting way to begin the new year, yes? Anyway, I’ve enjoyed your blog so far! And keep up the healing 🙂

  4. Lyme? My partner has it, was misdiagnosed for about 20 years (common in the UK where it’s little understood and you’ll know it presents in many forms amenable to misdiagnosis – plus Eliza assays for it aren’t reliable). She’s been on a series of mainly antibiotic treatments for 5 years and has made a lot of headway. I’m assuming you know about the various online communities/information sites since you also run your own! And since you say it’s your whole family that has it, I can only sympathise – I only know what it’s like living with one adult sufferer! Hope all goes well for you.

  5. Hello
    I am looking for a Dr who uses herbs not just antibiotics in the NJ are
    Any help would be greatly appreciated
    thank you
    jjbrillantes@gmail.com

    • Hi Jen- I see Dr. F in West Caldwell, she does a bit with supplements, but abx are her main focus. My kids see Dr B in Ringoes NJ. He does a lot more with herbs, but is not taking new patients.
      If you can, google “Cowden Protocol” and “Zhang Protocol.” Dr B has my kids on modified Cowden Plan and they take HH from the Zhang protocol. HTHT!

  6. Dolores Claesson

    Hi I am so sorry to hear your whole family has been affected by lyme. My 17 year old daughter has been very ill for 2 years and the rest of the family has lyme as well and has had it for many years so we are all in the stage 3 chronic NB category. Relatives in Sweden are developing Alzheimers as a result. Support from others who understand is invaluable. I wish you all the best for your recovery. I e-mail out research to anyone who would like it at dclaesson@verizon.net and will chat with anyone who would like to talk …813-235-9542 Warm Regards, Dolores

  7. Hi,
    I really dont know what to say, I thought I have bigger rproblem than you do…I have Neuroborreloisis and Bartonella Late Lyme just started treatment on March and struggling from it, I was taken on a medical leave then my LLMD give me another bad news-my youngest daughter has Lyme too…sometimes I feel like giving up for myself but when she was diagnosed this is all about her now, and I know what you meant of being ill and trying to take care of your child,who’s also ill is really the breaking point of Lyme..

    Im trying to get my 17 year old ReTested in Igenexx…I am nervous to find out, then my 19 year old next and my 23 year old next and my 25 year old next.

    My daughter so far is tolerating her antibiotic, I us Buhners protocol on her too , were both on Herbs lots of them that is so expensive but anybody who is desperate to get better or at least get a little of hope would do anything to get treatment. So I also just heard Valtrex might also keep the load down which is my own opinion is a great idea becuase its actually a virus not a bacteria anymore…

  8. it is 2012, please update your lyme healing! 🙂

  9. Pingback: Update | The Musings of FaeryWings

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