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Lyme Disease/Elevated D-Dimer, blood clot scare/Lyme?

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QUESTION: Hello,
I was diagnosed with Lyme Disease about 9 months ago, and have been on treatment since.  I believe I contracted it about 3 years ago.  I am currently under the care of a Lyme literate doctor.  Here's my question:  2 weeks ago, I went to see my GP (not my Lyme doc), due to shortness of breath and chest tightness (I also suffer from anxiety, and am currently also being treated for Babesia, so I thought the shortness of breath could be due to either of those, but went to GP just in case).  She did a chest x-ray, which was all clear, then a D-Dimer blood test to rule out a blood clot.  D-Dimer came back elevated, so I was sent to the ER.  They did a CT scan of my lungs at the hospital - all clear.  I wasn't really given an explanation about the positive D-Dimer, but didn't think too much of it, until now.  For the last two days, I've been having pain in my left leg - mostly calf and behind the knee.  It comes and goes (although it's almost constant), and seems to be worse when I'm laying down or sitting in a chair when there's pressure on my thigh.  No redness or swelling, just pain.  Now, of course, I'm thinking I could have a blood clot, or multiple blood clots in my leg, because I'm fixating on that elevated D-dimer test!  OK now to the question - can Lyme/Babesia cause an elevated D-dimer, or could Lyme/Babesia actually cause blood clots??

ANSWER: Dear Nicole,
Thanks so much for writing. I have to admit, your case is unique, as I have not yet dealt with someone who has had a D-Dimer blood test. I did some brief research to familiarize myself with what is involved and found that there ARE other Lyme patients who have similar concerns. Here is a link to one national support group which I am still a member of and was quite active in the early days when I first was diagnosed with Lyme Disease. It is: A) http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/107. The post was only a few days ago, so you may want to contact the person and and see if she might be able to offer additional support.

Before I continue,  like you, I used to be so concerned about being a "good little patient" and one that didn't "make waves". I could tell that my various doctors were getting very frustrated with me (this was before my diagnosis) and I felt so alone because I KNEW there was something wrong, my body was telling me that, but if the doctors don't see anything on a test, "well then there must not be anything wrong with you!" That seems to be the message that millions of people get each day. So TRUST your instincts - if you think that something is wrong, then don't stop until you get answers! Okay, that said, let's continue.

First of all, I'm VERY glad to know you're on treatment and under the care of an LLMD. I believe you said you were in Colorado? Hoping she or he is ILADS trained or at least follows Dr. Burrascano's Guidelines. B) (See http://www.lymenet.org/BurrGuide200810.pdf for more information)
Yes, shortness of breath can definitely be a sign of Babesia, but I understand your wanting to double check with your GP to rule out anything else. That was smart.

Here are some things to consider:
False positive readings can be due to various causes: liver disease, high rheumatoid factor, inflammation, malignancy, trauma, pregnancy, recent surgery as well as advanced age (In interpretation of the d-dimer, for patients over age 50 a value of ageX10 may be abnormal)
In the case of inflammation, obviously this is a very common symptom in patients with Lyme disease and therefore should be considered.

However, THIS IS WHAT I'M CONSIDERED ABOUT: After reading the account of the woman in the link I included above (marked "A") - her account sounds almost identical to what you're going through. I think she made an excellent point that although the hospital x-rayed her chest and lungs for clots, they did not check her legs which is what she was having issues with when she got home. (much like you) So my first thought would be to contact your GP or LLMD immediately and tell them there is a real possibility you may have a blood clot in your leg. Don't worry about sounding like you're overreacting - this is serious stuff and they will (SHOULD) take it seriously. Now, this is WAY out of my normal comfort field of expertise, Nicole, so I'm just giving you my own opinion based upon what you've told me and based on a few accounts my other Lyme patients (anecdotal if you will, which doctors just "love" (ha ha) but I've been through enough to know that again, you MUST TRUST YOUR INSTINCTS.

There is yet another account of a woman who had a similar experience with her legs in the same group: http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/720. You may want to post a question on here or do a search for past discussions about thrombosis and/or D-Dimer tests and see what comes up.

Nicole, I'm sorry I couldn't be of more help here, again, this is an area that is a bit out of my realm of expertise, however, I've given you some resources to check out and I hope that these will be useful to you. Please stay in touch and let me know how you're doing, okay?

My very best,
Bonni



---------- FOLLOW-UP ----------

QUESTION: Thank you so much for your response!  I am, in fact, the one who posted on MD Junction, your (A) link.  :)  It's a great site, and I have found a lot of helpful information and support there!  I ended up going to an urgent care facility yesterday, because my GP couldn't get me in, and I REALLY don't want to keep going to the ER!  You're right, I always want to be the "good, easy patient" and I really don't enjoy when I'm called out on my anxiety issues, as if I'm imagining my symptoms!  I went through that for over 2 years, before I knew it was Lyme.  Anyway, the doctor at the urgent care place was VERY kind, and helpful - she wasn't too worried about my leg, after examining it, but did write a prescription for a doppler/ultra sound on it, at an imaging center (so I wouldn't have to go back to the ER).  I went in today for the ultra sound - and it's all clear!  My leg still hurts, but at least I'll be able to sleep tonight, knowing it's not a blood clot!  Have an appointment with my LLMD tomorrow, so I'll fill him in on all this, and discuss the shortness of breath and elevated D-dimer.  Am not quite sure how to use this website yet, so I apologize if I wasn't supposed to respond to you as a follow up question - not sure how to stay in touch on here!  But wanted to let you know what happened at least.  And it's always comforting to know someone out there can relate!  Thanks again, so much!

Answer
Hi Nicole, I wanted to thank you for bringing me up to date and am so glad you will be seeing your LLMD. Am also very glad that you had the ultrasound done and it was all clear - I'm sure that must have been a relief that you didn't have a blood clot. Definitely discuss all your symptoms with your LLMD and I wish you the best of luck. If you ever need any other help, please feel free to write me again. Sending hugs your way!
XOXO
Bonni

Lyme Disease

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Bonni

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.

Experience

I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Organizations
Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

Publications
I have a blog called http://sandiegolymer.blogspot.com/ which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

Education/Credentials
I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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