blood test results came back!

[Jena]

hi,

so figured i'd update you guys........

spoke to hospital today, my blood test for lyme's came back today. it was POSITIVE for advanced lyme......

woman asked ton of questions and i told her, i tested 9 mos ago after i got married got a positive from another e.r. went to a specialist who deals with-lyme who said their wrong there's no way you have lyme. thats' when our journey began.

she said lyme's hard to diagnosis. but someone should of put you on the medications till they figured it out, now your symptomatic and once you have advanced it's bad. she said we are waiting on the western blot test now to return. that takes abouta week to confirm you have it.

round and round we go..........??? i've heard nightmares about this, how different doctors' read it the controversary.

anyone go thru this?? she said maybe you want to head to your gp to get the medications, until we get the western blot back. i said what's the point i've waited this long. she said no guarantee though that can come back negative and you can still have it.

 

[Jena]

soooo i called my gp set up appointment for tuesday, western blot returns on monday they'll fax results. i'll have to take the antiobiotics orally they say that usually doesnt' work when it's advanced. yet i'll give it a shot first.

thing is if western blot is read as being "negative" by whatever set of eyes i could still be positive because it's coming up showing antibodies since 9 mos ago first testing.

so much confusion with this lyme's disease thing. i also contacted the specialist who told me i didnt' have it almost a year ago to ask him exactly what stood out to you that stated in your mind/experience i didnt' have it. i dont' wanna go for mri on may 6th get diagnosis'd with ms if i have lymes.......

make sense?? closer and closer i get i hope to a diagnosis.

 

[hearts and roses]

Jena!!!! My brother had the advanced lymes and had to go on IV antibiotics for 3 months!!!

I was treated orally last year and I just was tested again because they don't think I ever truly got rid of it. Lymes, at the advanced stage is difficult to diagnose and treat because by this stage it is buried in the cartilage of your joints, most predominantly the knees. My strong advice is to seek medical help from an internal dr who specialilzes in infectious diseases, such as Lymes. Really - contact SUNY Stony Brook hospital for a referral if you can't find one on your own. You need a DR who specializes in Lymes treatment if you truly have advanced Lymes. Also, the standard treatment for early stage lymes is 3-4 weeks on Doxycycline...not good enough for the advanced stages. I know a woman who suffered for almost 7 years with the agony of lymes before she was finally treated by an infectious disease DR who then treated her with AB's for 8 months! Finally she had relief!

Best of luck~

 

[Jena]

hi

wow really? so he had it and now you also?? sooo odd. now let me ask you a question if you don't mind...... when you had the first blood result did the western blot show positive also??

we went to a specialist last year who read the blood disagreed with-hospital and said i didn't have it. as you know symptoms have been getting alot worse. so i told husband my gut's telling me it's lyme. so i went and had blood re run again.

we don't have insurance for me yet unfortunately, yet in all honesty my gp said he'd treat me. so i read up i can try the oral first see if any effect if not i have to go iv. how'd your brother do it? they hook something up to him on his person to walk around with??

all my doctors' seem not to agree that's the problem. they all read the tests differently. make sense?? so here we are setting up mri's rheumatologist appts trying to get answers......

yet it all fits, did yard work before wedding in july a week later joints began to swell. we said oh maybea spider bite, symptoms have been getting worse ever since. flare up's aren't flare upsanymore it's daily.

what are you doing for it for relief?? i read up taking garlic pills helps it's a natural antiobiotic in the system. i hope your ok and not in alot of discomfort

 

[hearts and roses]

when you had the first blood result did the western blot show positive also??

Yes the western blot came back positive as well. My APRN at the time said I was about 10 weeks into it. My current DR feels that the blood work I just had done on Monday will come back positive but with a low titer, however we shall see. When I told my current DR I was treated for 3 weeks, she rolled her eyes and said I should have been treated for at least 6 weeks. The APRN wouldn't test me again as my symptoms worsened, which is one reason I sought a new DR.

My brother lives in Smithtown and when he had the IV, it was just a 'butterfly' in his arm and twice a day he had to sit and have the medications put into him, at home. It was easy breezy he said. Once a week he went back to his DR's office and had the IV butterfly thingy changed out. His wife is an RN, so I'm sure that helped him deal as well.

In regards to reading the tests differently, with the initial lymes it's pretty simple, it's either a positive or negative. The Western blot seems to be the KEY test. I am not sure how they read that differently either to be honest. I saw the results of my blood work (I always ask for a copy) and it seemed very straightforward to me! Again, good luck

 

[Star*]

Well, I bet you are really 'ticked' off at your doctors.

I'm glad to hear you have a diagnoses, and are on the path to feeling better!!

 

[Jena]

jo

clearly you live near me?? i don't know the first and second test came back positive 9 mos ago. yet this other dr said na you don't have it. hospital said first round came back positive yet i have to wait on western block to return on monday. so if that's negative she'll say well you could stil have it than i'll be confused........ lol

i bet that cost alot of money for your brother. oh sheesh we have no insurance this should be fun. husband is going to have a meltdown.

star not yet but seems like i do. we'll see..

 

[pepperidge]

Hi

Glad you are getting close to an answer. Seems like from what I know that Iv antibiotics are the way to go. I don't think at this stage I would mess around with the pills. If you have limited resources might as well spend them on the treatment of choice.

Who was this other doctor anyway?

Hope you get some relief soon.

 

[DDD]

I agree you need to see a specialist. My best friend, who lived in our sorry community, was treated by a GP who was a nice guy but not a specialist. Finally in desperation she called the CDC in Atlanta and arranged a conference call with her local MD. She did get well but it took about six more months. You don't want to mess around with that disease. Good luck. DDD

 

[Jena]

hi

guys thanks...... i lined up my gp for tuesday. yet gotta wait on rest of test results on monday. not that this would be good yet it would be a relief to know what's going on finally...... and be able to just handle it and hopefully nip it in the butt!!

 

[HaoZi]

Get hard copies of all your results in case you do have to consult a specialist to get real help.

 

[1 Day At a Time]

Jena,

Our easy child contracted Lyme's last summer when he was hiking the Appalachian Trail and was bitten by a tick. He had the distinctive bull eye's rash - it was huge and very black - so the doctor he was able to locate after a two day side hike immediately prescribed the oral antibiotics. He was quite ill for a week - and ended up staying at a hostel for the entire week - although he was sure he'd only be off the trail for a day. It really knocked him for a loop. The doctor did tell him that he could have symptoms later even though he was immediately treated. One of his hiking buddies had Lyme's earlier and he had a short episode of Bell's Palsy later on. These are very healthy , fit guys who hiked the entire 2,000+ mile trail - so I agree - this is nothing to ignore. The CDC website has some excellent information - including an interactive map that shows the reported cases in the country. It's apparently very, very common in the Northeastern states.

Valerie

 

[Jena]

haozi i did thanks....... i had copies of last round of testings done 9 mos ago now i'll have this new round. i had everything faxed to my gp for my appointment on tuesday. we'll see if he can handle it depending on what the western blot says.

i'm just nervous it's going to be negative (sounds silly right lol) than i'll have to hear well Jen just because it came out negative and the first test was positive doesnt' rule it out. square one again........

i think in that case i'll just take the medications. i've heard it'll have to be thru iv. now

valerie wow yet he beat it, right? that's great he was able to treat it right away. scary stuff right?? i never think when the kids go into the backyard yet now i will be thinking alot. i hate putting deet on the kids i've heard it isn't good for them etc. yet i'm picking up some bug spray this weekend and my dogs need another round of frontline.

glad he's ok, and his friend too is good?

i hope this is it and it'll get treated and be over that would be great. whatever this is lately stops me dead in my tracks on some days. i can't pin in anymore. i used to keep notes and i'd see it flare once every two mos. than went down to exactly once a mos. now its' everyday swollen knees leg pain and burning me dillussional all the time. lol i put notes in my phone where i have to go, on a board i bought in kitchen with our schedule and i double down with a planner when i remember

husband and i try to talk he'll say do you remember that blah blah blah...... i'm like what are you talking about?? i also get to watch movies again and again because i totally forget them! so some advantages

 

[Josie]

Whatever your test results are on Tuesday, you are caught up in the whole controversy, one way or another. If your test is positive, there is controversy over the right treatment. If your test is negative, there is controversy over the testing.

I think you should read the book "Cure Unknown" by Pamela Weintraub before your Tuesday appointment. Weintraub is a science writer and wrote her book from the point of science. Along with this, she and her family have Lyme, so half of her book is their story. Her book won the 2009 American Medical Writers Association for best book in 2009. As an author, she had access to experts from both sides of the problem. Last fall, she spoke at the Institute of Medicine's workshop on the state of science in Lyme Disease. She isn't just a random Lyme patient telling their story, like some of the other books out there.

The book explains the WB and ELISA testing, which will be good to know on Tuesday.

 

[1 Day At a Time]

I googled Pamela Weintraub and found a link to articles that she has written about Lyme Disease under "Related Articles by Pam Weintraub".

It's instructive information . Our easy child is doing quite well, he doesn't seem to have any ongoing problems, but he is aware of the symptoms. His buddy's Bell's Palsy cleared up, but was quite an annoyance for a while.

Valerie

 

[Josie]

Here's an excerpt from her book. This part is her story, but the book is very detailed in the science, too. http://www.lymebook.com/chapter-1-weintraub

The boy mentioned in the excerpt did get better, but it wasn't by listening to the so-called Lyme experts who said he didn't have Lyme.

 

[Jena]

thanks so much you guys are the best, truly. i had picked up another book i was hoping to begin today if i could at some point. i don't know what i did to aggrivate it. yet last night my legs were burning than today i woke up knees are huge swollen and the discomfort is huge. doctor told me stop popping the aspirin next i'll have an ulcer. yet i had to today i'm hoping it helps. i have so much to do make baskets for kids, bake. i'm in bed walking is a true effort.

i've been horseback riding once a week for while, lately i've cut it down to everyother due to the pain and i just can't pull it off in the ring for 30 min. trotting canter up and down on my legs, yet i recoop from that. yesterday i cleaned difficult child's horrible hoard bedroom and well that has to be it.

i've been patient wtih this, haven't really freaked out. yet now i've had enough between the memory loss blurred vision joint pain neck pain i am like ok i give up!!!!