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ethansmom

Diagnosed with Mono & Lyme Disease!!

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I saw an autoimmune/infectious disease specialist last month, and he performed some very extensive DNA testing to look for some causes of my chronic fatigue. I was very impressed with his knowledge and was hopeful that this might be my one chance to find out what could be causing my POTS. The initial tests came out normal, but he took it one step further due to borderline positive results for mono and lyme disease...turns out I have BOTH. He is certain that this is what has caused POTS for me. He would like to treat for the lyme after the baby is born...that there is a good chance that my autonomic nervous system can heal in time. He also thinks I should feel better once I get well into my second trimester, since higher oxytocin levels tend to mask symptoms for most patients. This would explain why I had a great pregnancy last time. According to the tests, I have had lyme for years, and previous exposure to mono which is causing a big, long flare up that won't go away. What a mess I am!

So my question for you all is...has anyone with Lyme been treated and had relief from their dysautonomia permanently? What about mono? I've had the same symptoms for over a year, is it possible the infection can last that long? How will it ever get better? I am just curious to find out more now about those of us who have these diseases and how their health has been affected after they found out. I am just so releived to finally know, even though I can't do much about it right now.

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Wow! That's Big news, Jessica! I'm sorry to hear that you have these conditions ... but I'm glad that you have so much more information about what's going on! And more important, that you'll be treated after your baby is born. This all sounds very good ... in an icky sort of way. Know what I mean? :D

I've never been tested for either of these ... can you say what symptoms you reported led them to head in this direction in your testing? Is fatigue the main one? (And if so, is it sleepy kind of fatigue or muscular kind of fatigue or low energy kind of fatigue or or or ... there are so many ways to describe even that one symptom!)

I hope you feel better as these weeks wear on and that the nausea soon lifts. Do you have peapod in your area? (online grocery shopping ... it's the best)

Best to you--I've missed you too.

m

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Hi Jessica,

I'm glad you may be getting to the root cause of your symptoms. It's so good to hear from you. I was getting worried about you too.

When you say you test positive for mono, do you mean the Epstein Barr Virus that causes mono? I always test positive for EBV, and it always shows like I have it currently, although I had mono when I was 10. Many people test positive for EBV and it's often indicated as a factor in many chronic illnesses and autoimmune disorders.

Also, I tested positive for Lyme disease, (this was a few years ago, pre-POTS) I went on the standard medical treatment for it and still tested positive, so my next doctor did the proper test, which takes it a step further and sure enough the next step came out negative. So, long story short I had a false positive for Lyme. They don't know why in the intial part of the test I always have a false positive. They say a lot of things can cause it, but I never found out what and never gave it another thought.

I can't tell from you post, but it sounds like he did 2-part test on you for Lyme disease? Anyway, I know you're eager to start feeling better. I'll keep you in my prayers . :D

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I was just thinking about you as I was falling asleep last night! I was going to post today to ask about you, but glad to see that you're alive...and as well as could be expected.

Since I've had autonomic dysfunction from birth--I'm not going to weigh in on the mono and/or lyme issue. I hope that, for you, treatment for that stuff means a full recovery.

Nina :D

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Funny thing is I was thinking about you earlier today relizing that I have not seen your posts for a while. I am glad that you have some answers and I will pray these answers will lead to permanant relief from POTS. However you will have to visit us once and a while. I have a feeling that I am here for life. Take care of yourself and the precious life inside.

Dawn

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hello jess!

oh, we must all be on the same mental energy...b/c i was just getting ready to do what calypso did too! post to say are you okay? i have missed you so much on the board.

i am sorry that you have had such a miserable first trimester. ugh! are you and ethan doing a lot of cuddling in bed together? :D can you hire someone to help you out at all with cleaning/laundry? you sound pretty overwhelmed!

also, thanks for sharing your new insights from the doctor. i hope that after the baby is born, you will find relief with treatment.

i don't know about lyme. i had mono in college and was never so sick...until POTS of course! i was so sick from the mono and a secondary infection and almost didn't return for my second semester of college. thank goodness i had the best roommate in the world who helped with making my bed, laundry, getting my mail, making sure hallmates were quiet at night, etc. etc. still, i don't think i ever fully recovered from that...i progressively went downhill throughout college and then got hit full-blown after graduation.

oops, rambling here and losing my point. i guess that i thought with mono the only cure was lots of rest? has that changed? i thought it was just waiting it out? also, i thought (but please don't take this for sure...my facts might be messed up...) that once you have mono or epstein barr virus you always test positive for them, even after you have recovered from them? for instance, many people test positive for EBV just b/c they had it at some point in their lives (and maybe had such a mild case they didn't even know it).

anyway, i am pooped. surprise, surprise...but i am so glad i checked in today and got to see your post and know that you are still out there. i wish though, that you were feeling better! did you ever find any relief for the nausea with the zofran or anything?

well, you are in my thoughts every day when i log on...i got so used to seeing 'ethansmom' pop up...i miss it! :) so, check in when you can and let us know how you are...and even when you aren't up to checking in...know we're here cheering you on!

emily

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Jessica, you must be so elated to have found a new doctor that has taken your condition very seriously. It is wonderful to have the thorough test and I do hope that once you deliver the baby there will be treatment that will help you improve. That would be the most wonderful news!

Sorry you are still feeling bad but soon will be well into the 2nd trimester when things will improve (fingers crossed!).

take good care and like others, I was glad to hear from you today.

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Guest tearose

Hi Jessica,

It is good to have you back! We missed you and news of Ethan and David.

Please try not to take my experience as what to expect...is was after Lyme that I had my pots symptoms. Remember that my body had been through two pregnancies, many hours of airplane flight at 38,000 feet, a hang gliding accident and a kitchen accident that landed me in the Cornell burn unit! Anyway, I feel that the IV antibiotics did succeed in killing the lyme and that I am left with the damage. It is because of the damage to my ANS that I have dysautonomia. The combination of the condition of my body and the 9 months of undiagnosed Lyme is different than your path, right? I want to help you stay focused on your wonderful pregnancy and your family and you! I don't want you or me to spend any energy on what may happen since you may actually improve!! If you insist on more information then of course tell me.

I'm hoping to hear that you feel better as you enter your second trimester!

take care, tearose

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Jessica

So great to hear from you on the board again. I hope you start feeling better with this pregnancy soon. How is the nausea these days? How is Ethan doing? Happy Birthday to him day after tomorrow, btw!

I'm glad you have a doctor who has performed exhaustive tests and it's great to have some possible leads on what may have caused your POTS.

Regarding the borderline positive test for Lyme--what test found this? I am only curious b/c I also had a "borderline positive" result with the Western Blot test ( positives for 2 antibodies--if that makes sense). However, I was told by both my primary care doctor and a neurologist, who treats Lyme all the time, and is a bit of a specialist in it since she worked in PA for awhile where Lyme is getting more common, that this was not a cause for concern or warranting treatment. What it shows is a POSSIBLE past exposure to Lyme. This was kind of confusing to me. Back in 2000 I had a tick bite that grew to the size of a quarter and followed by a high fever. My doctor immediately put me on a regime of antibiotics. I never had any further symptoms. So, perhaps that exposure explains my results. ANYWAY, Lyme disease diagnosis and treatment still seems to be a bit of a puzzle. In my case, I do not believe Lyme infection is related to my POTS. I started getting POTS symptoms prior to that tick bite event.

Anyway, it doesn't sound like this is anything you need be alarmed about (these positive tests) and can address later after pregnancy, if need be--which is good news!

Take good care.

Katherine

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