Rosie,

Great info. From what you posted my MVP is primary as my anterior leaflet is thickened. I guess I should start taking salt again as suggested by the one article. I have been trying to psych myself to doing so by putting my Himalayan salt back on the counter. Maybe I should start soon as my 6 mos. checkup with my EP is this month and he told me to last visit.

I wish I read further to your post, because I looked all over for MVP in the Lyme list. LOL

I wonder if any of you with MVP or dys. have a relative with MVP? My mother had to have her MV replaced, but so far only 2 sibs have been checked (echo) and they don't have it. I think my son my have Marfan's syndrome, he sure has the build.

hugs

Jan...My daughter also has the build for Marfan's, has mvp w/superventricular tachycardia, Long QT Syndrome, and vasovagal syncope (I think that's all). When she was younger, her pediatric cardiologist said she did not have Marfan's because she didn't meet ALL the criteria.

Researching on line, some cardiologists don't seem to think ALL the symptoms must be present, but her cardiologist disagreed. Her cardiologist was tragically killed in a car crash a couple of years ago, but I still think everything he ever told us was gospel. He was absolutely the BEST! What a loss!

I'm sure you're probably aware that Abraham Lincoln had Marfan's. Just an interesting bit of history for those who didn't know. It is suspected that if he had not been assassinated he probably would not have lived very much longer.

Rosie...The appt went very well, except that my cholesterol was high. I foolishly went off my lipitor after a very good appt three months ago and thought that since I had changed my diet I wouldn't need the lipitor anymore. Wrong!

My pcp was very receptive to all the information I presented. I had everything in a 3-ring binder and had highlighted a lot of things that applied to my particular situation. He was aware that I had done a lot of research and commented that all the classes he goes to have similar hand-outs. He was going to take the notebook home with him to read at night and will give me a call. He's very interested in learning and I'm very willing to give him that opportunity! It's a win-win situation as far as I'm concerned, especially since there are no local dys specialists in my area. Thanks for asking!

Back to the topic, according to my medical records I have a 1+ mitral regurgitation; there is prolapse of the anterior leaflet; and there is thickening of the mitral leaflet. Also had left ventricle ejection fraction of 45%, which has now improved to 65% after being on an ace inhibitor. No doctor has ever told me I have mvp, and I've never been told to take antibiotics prior to dental treatment, and I'm not symptomatic (unless the dys is caused by this). And nowhere in my records does it say MVP specifically. I'm sooo confused! If I only had one thing to deal with and understand, I think I could handle it. But all these conditions that overlap each other confuse the heck out of me! The more I learn, the less I know

so jan, you had mvp before lyme? do you think the lyme could have caused it? or, do you think that having had mvp, the lyme could have targeted your ans more readily than other symptoms?

Rosie...To be specific, are you referring to the "cause of dys?" thread Gracie posted which includes your link "A Glitch in the Nervous System?" I don't mean to be so dense, but I'm not making the connection. Thanks for your patience!

Oh, shoot! I really don't want ANOTHER diagnosis!

Sorry I seem to be dominating this thread guys. Please bear with me. I think I understand now. Is the indication then that if I have mvp (which I agree it sounds like I do) then that may be the cause of my dys?

Ah ha!! Rosie, please tell me if I'm wrong!

rosie - i have had my thyroid levels checked three times now. not for awhile, but all have been very normal. would thyroiditis show up on tsh and t3 tests?

Hi Mollie, sorry to hear about your daughter's problems. Glad to hear about your dr. being so willing to learn! It is no longer recommended to those of us with mvp and mild regurg to take abx before certain procedures (such as dentist appts.). Yay! haha I say Yay and then remember I am on more abx than that.

Hi Gracie, it is suspected that I and my sis (we don't know about our other sibs yet) and my niece and 2 of her children have had Lyme since childhood. We were certainly in deer terroritory and weeds since babies. It is thought that my niece possibly has congenital Lyme and that her children do.

I don't know about the MVP. Rosie, is primary MVP congenital? That article about the panic attacks and all the ologists doesn't sound like me. I don't have panic attacks and all of my ologists have been very helpful. And I don't feel like I am going to die with every arrhythmia I have. I didn't read further than that.

hugs

PS My mother's sibs - bro. had a massive stroke at age 42 and her sis died of a bad heart & milk arm hrs. after giving birth. Her baby died quickly as she was a blue baby. These terms are old and I looked them up quite some time ago and forget what they mean, but wonder if my uncle and aunt had MVP (if so, I guess more serious, like my mom).

PPS (My PS's are going to be longer than my post. LOL) I had my thyroid checked a couple of times, or more. Esp. just before my Lyme diagnosis, because some of the symptoms I had with the Lyme mimicked thyroid problems. I tested fine, but later found out that Lymies have thyroid problems that don't show up with testing. They have adrenal problems, too.

jan, does this explain why a lot of lyme disease patients have low body temperature? when i started noticing that i was becoming sick, i watched my temp gradually renormalize itself at around 96.5-97, from a dead-on 98.6

Hi Gracie,

I couldn't follow the part when you asked "does this explain". What is the "this"?

My temp is all over the place, too, but from what I understand is this happens with dys, also.

I remember reading somebody's article on Lyme and it mentioned about a fever (when it's gone you are almost done treatment). I thought I never had a fever and then found in another article that the fever is having a low temp in the morning that increases during the day. It is still under 100* usually. This seems to be how mine are, I range from 97*-99.3 But, I still don't know if everybody experiences this symptom with Lyme or not.

It is confusing, like what came first the chicken or the egg? Lyme can cause dys., so I guess what a person would have to do is if they feel they have Lyme go to a LLMD.

hugs

Rosie,

Ok, I'll read further and let you know. I know inherited is from birth. Did it say that primary was inherited? If so, that's what I get for scanning. It's just that my brain isn't up to a lot of reading. I can read a lot of short things, and I mean short. LOL

Thanks.

***********

Ok, so I read it all. I do have a lot of phobias, but was attributing that to Lyme (as it causes anxiety, panic attacks, and seems to cause phobias). I have been told I am a perfectionist and never believed it until I read the flylady.com site. And I am all the nice things it said...IMHO LOL

hugs

jan - you answered the "this." sorry to confuse. i was going on your comments about hypothyroidism being common in lyme, but people not necessarily testing abnormally.
my body temp is all over the place too. often it is around 97 in the AM, and can increase to 99-100 in the afternoons. However, I also experience intense facial flushing with the increase in body temp. Not really sure what's going on there.

Rosie - I believe my thyroid levels have been around 1.75-2, which, as I understand, is like optimal. Isn't a level greater than 4, or maybe 5, considered hypothyroid? I haven't checked on them in awhile, but I do remember being quite shocked that mine weren't even close to hypothyroidism, since I believed I had all the symptoms. Unfortunately, I am quite sure that the lymph nodes and flushing and low body temp are not due to the thyroid, as I had DEFINITELY suspected at one point.

Gracie, I am confused most of the time and don't need help getting there, I just can't get my mind working. Glad I answered it. LOL

I noticed lately that I am getting a little flushed, not terribly obvious. I think it is happening (my memory is shot) when my burning/stinging skin sensation is at some of it's worst.

Rosie, here I go again. Ok, I know primary means not from other causes (that is secondary), but it primary always congenital (meaning born with or inherited)?

hugs

Yes, that is what I meant, with the MVP.

Thanks for your patience, Rosie!!! I told my LLMD yesterday that I was having more confusion I think from the die off (of the Lyme bacteria - borreliosis). It got downright scary when I messed up my meds again and made myself very sick. So, she recommended using detox foot pads. I started last night. I tried them before and didn't really see a difference, but it's worth trying.

hugs

those are very interesting articles, and i am going to take them to my doc for sure. i haven't been tested for the antibodies. however, i am not exactly sure what the implications of having antibodies are? it seemed from the first article that thyroid antibodies didn't produce nearly as many symptoms as hyper- or hypo- thyroidism.