Thinking about it again after 5 years

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Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted 10/16/2009 11:36 PM (GMT -6)   
I had lyme disease as a child (age 7) and was treated with IV antibiotics for two weeks and I was hospitalized. I never assumed I would ever get lyme disease again. In 04" I worked on a horse farm in NJ and saw this mysterious rash.

http://i96.photobucket.com/albums/l180/pugsnchickens/yucky.jpg

At the time I had just been diagnosed (age 23 in aug of 04) with what I would learn to be a life long disability, a bleeding disorder called ITP. I still have it and also some other issues I developed as an adult (asthma, graves disease). I am now 28 years old. I originally came here when I was first married, and Ticker helped me out with some information.

I never ended up seeing the doctor in Jackson due to financial difficulty (I was a newly wed and we were in debt). I forgot about it and went on in my life, as the doctors that were covered by my insurance just threw their hands up and didn't want to further investigate. I came to a point where I just didn't want to see doctors anymore. I am now covered under disability and I see my oncologist every month for my bleeding disorder (ITP). Since then in the past year and a half I had a baby girl, who was born two months premature (very high risk pregnancy, placenta previa, multiple placental abruption).

A friend of mine believes they were infected with lyme or a similar disease from a mosquito bite. They have had crippling illness ever since, but seem to improve with a short course of antibiotics (cipro) and go back to illness when off the medication. I sent him your email along with Dr. B's paper. I am sad to see how that poor doctor was shunned for his efforts. I was too, too bad doctors won't make a clinical dx and place more value on the tests. So my point of emailing you was that ever since I have been thinking about my friend, I have given a little hope on trying this again, even though it's been almost three years. I still have unexplained health problems, and I still have a picture of my rash, and my western blot which showed the 18KD band was reactive (but only reactive band) on my test, along with a high Lyme AB screen. They said I had to have 5 bands to be diagnosed, even though my rash was back in 04, that was a long time ago and I'm sure could effect my diagnostic tests. I was put on steroids for my bleeding disorder and it only seemed to make things worse. Since all of that my health had improved surprisingly enough with being pregnant with my daughter. I had a good year and a half of no brusing, but I look diseased again. On the inside I look beat up, but on the inside I have improved, I stay active, exercise, eat better, I am in love with my husband and baby girl, and low stress levels. That's probably what has helped my overall health. I still struggle with fatigue at times, but push through it.

Now that my husband and I are more financially stable, I am thinking of going to see her, but I'm wondering if there was somebody closer in my area. Do you know of one in NE PA? I'm in Emmaus, although I'm still not opposed to seeing the Dr. in Jackson, NJ.

What is your honest opinion should I pursue this? My oncologist never saw anything in my blood smear. Maybe the rash has no significance, I'm not sure. I'm just curious. Thank you all for reading.

Kara
Kara
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/17/2009 12:29 AM (GMT -6)   
Hi Kara,

Welcome back to the forum....although I hate saying that because you are now suffering again. Have you emailed Ticker again? If not, here is her email:

ko_@bellsouth.net

If you need anything else, please let me know:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 10/17/2009 6:24 AM (GMT -6)   
Hi Kara, I see an LLMD @ the Tick Borne Disease Center in West Chester. I think that is about an hour from you. He takes his time with you and reallly knows his stuff. you can just google the center for his info if you'd like.

Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted 10/17/2009 1:18 PM (GMT -6)   
Hi, yup I emailed Ticker. I actually don't feel ill, I still have chornic ITP and Graves disease, and never really understood for sure what contributed to that. I have a couple theories. My friend saw the Lyme doc in Jackson -- she thinks he has lyme, and it's going to be expensive to treat. They are unsure what to believe, that either she's a genius or crazy. Maybe she sees the symptoms often and knows what to look for. They are unsure of what to do at this point. I came back on here just because I've been thinking about having lyme in the past. I took doxycycline for a month, and although I still have some health problems, I consider myself in 'good health', if that makes any sense. In much better health than I was a couple years ago when I first visited this site. Is it possible that there could be any lingering effects or is the 'damage done' as my last infectious disease doctor said.
Kara
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/17/2009 3:59 PM (GMT -6)   
Kara,

In my opinion, and from what I've read, sometimes it takes w while for our bodies to completely heal. Those bacteria are like corkscrews and they drill into our tissues, muscles and bones. I'm sure that all takes a while to heal.

You said you have Graves Disease. That can also give you some "not so great" symptoms.

I'm not saying not to look into seeing an LLMD. I'm just trying to give you a bigger picture. You're the only one that knows your body.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted 10/17/2009 4:09 PM (GMT -6)   
Hi Cajun Girl,

Thanks for writing. I'm mainly here out of curiosity. My ITP and graves have always seemed to be leveled off by my body, basically unless I'm under severe stress, they are kept "in check" at a decent level. My graves numbers are off the charts, but I suffer from no symptoms, except for a few months after the birth of my daughter (heat intolerance mainly, that's it). My platelet counts hover from 30-90 thousand. Usually when they go down to 30, I "bounce back" to around 50. When I was pregnant with my daughter they were consistently in the 80-90k range, and it was awesome to be bruise free for a little over a year. I have not needed to treat for 2.5 years so far. When I first was married three years ago, that was a different story - I had joint pain, fatigue, was getting meds for ITP very frequently...

Aside from ITP, the only problems I encounter are very stiff muscles in my upper back. I see a chiropractor, and that helps, but muscles are still very stiff. I exercise and stretch too. I tried improving my posture and that seemed to contribute to more back pain (muscles tired).

Is it possible our immune systems could be fighting this thing in the tissues, that's why there's autoimmunity? I wish I could point everything to lyme. Seems like there's so much controversy about it, and hard to find a doctor who will entertain the idea that's covered under my insurance.

Anybody in my family that gets a tick, myself included, will self medicate with antibiotics I have on hand. This is just not worth it to suffer. I don't want to put my daughter though what I went through when I was 7. Very painful.

Kara
Kara
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/17/2009 4:18 PM (GMT -6)   
Kara,

Lyme Disease is so complicated because it causes so many others things to happen in our bodies like thyroid problems and diabetes. I have Hashimotos and I think it was caused by Lyme. I think it is possible that our bodies are still attacking things they think are intruders but they are actually attacking things we need, like our thyroid.

Why don't you try making an appointment with an LLMD and see what they have to say. In my opinion, an LLMD who is an internist too is better.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 10/18/2009 6:15:43 PM (GMT-6)


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 10/18/2009 5:23 PM (GMT -6)   
Hi Kara,

I live nearby you in the Mertztown area. I was treated by an ID Dr., but she didn't believe in chronic Lyme, so I wouldn't recommend her to someone who has been infected so long. I was just lucky that she treated me at all, and now I take herbal supplements to keep my immune system up. If you would like to talk though I would e-mail my phone number.

Thanks Jenn for your info. I hadn't tried to find an LLMD, but if the ID Dr. didn't work I was going to have to find one.

Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted 10/18/2009 6:59 PM (GMT -6)   
I am considering it. Yes I'd like to email about herbal stuff. I'm into herbs, what do you take?

What I do not understand, if I got a positive on the Elisa, but was considered negative because I only had ONE lyme specific band present, why didn't my doctors want to atleast retest since the tests conflicted each other? I don't get it.

My friend saw this guy Dr. Bach in PA. What do you guys know about him? He seems to be expensive and it sounded a little nutty to me that he assumed the whole family probably had lyme (saying it can cross the placenta, and by sexual contact). I just don't want my friends to get rooked so I said I'd ask you all. I sent them the link to the tick borne illness center. I'm still thinking about going myself -- do they take insurance?
Kara
 


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted Yesterday 8:33 AM (GMT -6)   
I see Dr. E in Jackson NJ. She saved my life. She does take Medicare & Medicaid but no other Health Insurance. I had to pay her out of my pocket but it was well worth it.

I live in Bucks County Pa. but the trip to see Dr. E is well worth it.

I'd be glad to answer any questions about Dr. E.

saxmar

Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted Yesterday 9:34 AM (GMT -6)   
Saxmar,

How much did she charge for an initial visit, what tests did she run, how long was your wait? I do actually have the option to get medicare. I wonder how much it would cover.

Kara
Kara
 


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 10/21/2009 2:59 PM (GMT -6)   
I am e-mailing you!

Chickenlady
Regular Member


Date Joined Feb 2005
Total Posts : 45
   Posted 10/21/2009 3:21 PM (GMT -6)   
looking forward to reading it! I'm doing my research, calling centers...looking to see who will either take my regular insurance or medicare, and how much that will cover. I'm getting kinda excited, because now it seems like a doctor will finally get to the bottom of things.

I've said recently, I consider myself in good health. Then I sat and thought about it, I do have alot of chronic problems, that I've just learned to live with over time, and when I have bad flares and they're over and done with, I go on with life. I don't want to get in the "I'm sick" mindset, because that can have alot of power over my body. But in reality, I do have some chronic issues I've come into grips with.
Kara
 

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