Good thing I didnt get my hopes up at the Infec. Disease docs

[Erin]

Just got back from the appointment at the infectious disease doctors (yes, I know, they're worthless for diagnosing lyme)

I was told (in heavily Farsi accented English) that "no. You dont have Lyme".

I expected that.

They went by all the tests that the MS clinic did for me...and they were seriously questioning why the Nurse Practitioner at the MS clinic ordered that Western Blot. Hopefully she wont be getting into trouble over that. (not that I'm worried, she's leaving the MS Clinic because all the muslim doctors have been really treating her badly)

I guess I'll stick with my regular doctor. Hopefully the Igenex test will show something.

It's just so (not) fun to see a doctor and have them look at you like you're the most nutty hypochondriac they've ever seen.

And it wasnt really all that fun to sit in a hospital that has their air conditioning set to "Bake". I'm currently worshipping my air conditioning and ceiling fan in my basement bedroom. I think it got over 100 degrees today! Too hot!!

[lymebytes]

Hi Erin. I am glad you knew what to expect at the infectious disease doctor appointment. It really is frustrating that so many in the medical profession are ignorant of tick-borne illnesses.

I agree, the heat and humidity are horrible!

[Erin]

I'm staying in my basement until the heatwave is over...that should be another couple of months.

Yeah, I went in there knowing pretty much what to expect, and as soon as the doctors realized I was somewhat knowledgable of both Lyme and MS and was using actual medical terms instead of using non-medical terms for symptoms they really turned up the "you cant have lyme, even tho you've had 4 tick bites, a rash, 2 bands of bacteria on a WB, and neurological symptoms. You should start doing MS drugs NOW"

While, I still do believe that I have MS and not Lyme, and I'll really be surprised if my Igenex test comes back with more bands of bacteria on it, I'm going to have to restrain myself from marching down to those two doctors and shoving the test results in their....ummm...faces and saying "HAH!".

I dont like it when doctors treat me like I'm a nut...just because a person is knowledgable doesnt make them a hypochondriac.

They both made the comment that they didnt think I believed them. It's not that I didnt believe them, it's the utter shock of being treated like I'm nuts.

I should be used to that by now...last year when my neurological symptoms started, every doctor I went to said it was "a sprain, a migraine, possible diabetes, a slipped disk..." Then I finally got my regular doctor to listen to me in December that I wasnt feeling better and he did a spinal MRI and that showed lesions. Then they couldnt tell me I was nuts...there was something going on.

At least now I have a regular doctor who's not treating me like a hypochondriac. I cant wait till they get the Western Blot results back. Even tho I'm not expecting any more bands to show.

[Luvmycat]

HI, I visit only occasionally now and saw your posts.

I can sympathize with what you are going through. I saw 14 doctors and 'ologists over the course of two years and ended up in the ER three different times due to severity of symptoms. I was once a "maybe MS" diagnosis, too, because I even had brain spots but they were later determined to be Lyme lesions.

I drove three hours once to see an infectious disease doctor and it was a total waste of time and money.

I should have started a scrapbook with all of the prescriptions I was given for anti-depressant and anti-anxiety medications. (I told my doctor it was like giving cough syrup to someone that doesn't have cough!)

After my throat became paralyzed and I could barely breathe, I made the decision to take out hospice care insurance and extra life insurance before any devastating diagnosis hit my medical chart. My attitude was they can figure it out when they do the autopsy.

Only after someone in the neuromuscular forum on this site posted a link to www.lymenet.org did I figure it out. It was then that I decided to take matters into my own hands and become my own advocate. I found a Lyme specialist. I also wrote letters to many of the doctor I had seen that missed my diagnosis. I never received a response from any of them. My primary care physician was no longer my physician.

It was total jubilation in the entire family that I had Lyme. It had been a long, stressful road and I never complained one bit about all the antibiotics I had to take. I was just thankful to be alive!

Hang in there and I sure hope you get some answers.

Carol

[Erin]

HI, I visit only occasionally now and saw your posts.

I can sympathize with what you are going through. I saw 14 doctors and 'ologists over the course of two years and ended up in the ER three different times due to severity of symptoms. I was once a "maybe MS" diagnosis, too, because I even had brain spots but they were later determined to be Lyme lesions.

I drove three hours once to see an infectious disease doctor and it was a total waste of time and money.

I should have started a scrapbook with all of the prescriptions I was given for anti-depressant and anti-anxiety medications. (I told my doctor it was like giving cough syrup to someone that doesn't have cough!)

After my throat became paralyzed and I could barely breathe, I made the decision to take out hospice care insurance and extra life insurance before any devastating diagnosis hit my medical chart. My attitude was they can figure it out when they do the autopsy.

Only after someone in the neuromuscular forum on this site posted a link to www.lymenet.org (http://www.lymenet.org) did I figure it out. It was then that I decided to take matters into my own hands and become my own advocate. I found a Lyme specialist. I also wrote letters to many of the doctor I had seen that missed my diagnosis. I never received a response from any of them. My primary care physician was no longer my physician.

It was total jubilation in the entire family that I had Lyme. It had been a long, stressful road and I never complained one bit about all the antibiotics I had to take. I was just thankful to be alive!

Hang in there and I sure hope you get some answers.

Carol

Yes, I know.. I need to find a Lyme knowledgable doctor. The only thing is, that when I've checked the sites that can tell me where to find one, there's no one within 100 miles of me.

At least my regular doctor is trying to help me. He drew blood yesterday for me to have sent to Igenex. I think that if I get the results from Igenex back and it's not positive according to them or the CDC, I'm just going to totally accept the MS diagnosis and get down to treating that. (ahh...the river of Denial has been an interesting ride)

I'm going shopping in the next 3 weeks for a nice little refridgerator for my MS drugs that I'll probably be storing the drugs in. (if I get the fridge and end up with a Lyme diagnosis, I'll just store water and pop in the fridge)

[Sonsie]

Erin, good for you! You checked out an avenue that deserved checking out, and you were educated enought to recognize a very bad situation. Remember this: In your case, it is the doctors who are stupid, not you! I do ache for the folks who won't realize that the assurances of doctors like this are false. (By the way, their anti-LD attitude and lack of knowledge has nothing to do with religion or national origin. It is related to what their medical school taught them and what the IDSA tells them to believe.)

I am glad that your regular doctor is open to treating you. Kudos to him. :) Please realize that if your tests come back "negative" (and they likely will because your immune system isn't fighting the infection at this point, based on your symptoms), this is no reason not to treat for tick disease. Diagnosis is clinical, not based on test results. MS treatments make LD worse, and this is not a direction I personally would go until I'd tried good LD treatment for a few years.

There is a way for doctors to get "scholarship" money to attend Lyme conferences, and I'm trying to find out where that information is posted. Your doctor might be interested in taking advantage of it, should the dates and locations happen to be OK. Stay tuned....

[Erin]

Erin, good for you! You checked out an avenue that deserved checking out, and you were educated enought to recognize a very bad situation. Remember this: In your case, it is the doctors who are stupid, not you! I do ache for the folks who won't realize that the assurances of doctors like this are false. (By the way, their anti-LD attitude and lack of knowledge has nothing to do with religion or national origin. It is related to what their medical school taught them and what the IDSA tells them to believe.)

I am glad that your regular doctor is open to treating you. Kudos to him. :) Please realize that if your tests come back "negative" (and they likely will because your immune system isn't fighting the infection at this point, based on your symptoms), this is no reason not to treat for tick disease. Diagnosis is clinical, not based on test results. MS treatments make LD worse, and this is not a direction I personally would go until I'd tried good LD treatment for a few years.

There is a way for doctors to get "scholarship" money to attend Lyme conferences, and I'm trying to find out where that information is posted. Your doctor might be interested in taking advantage of it, should the dates and locations happen to be OK. Stay tuned....

I'm so happy that my regular doctor is somewhat open-minded. I hope that test comes back with a positive, but I'm not expecting it to.

He did just put me on a prednisone taper for the vertigo that's been knocking me down every few days for the last several weeks. So far that seems to be working, and other than making me really hungry while making me have a really bad stomachache (I'm also on antibiotics too), the steroid actually seems to be helping me. I havent been thrown to the floor by the vertigo for three days, my extremely painful low back pain hasnt bugged me since the first day of the taper, my vision improved so much in the last 24 hours that I can see the colors green and yellow almost perfectly again (yay!). So, except for the tummy ache, I'm feeling better today than I have in over a year and a half.

I dont expect the good feeling to last. I'm just waiting for the neurological icky poo's to come back and make me sick again...but I did take advantage of the good feeling today and went to my local yarn store for some yarn and to replace my tragically broken yarn winder, and then went to Hobby Lobby to peruse the BIG clearance sale they were having and loaded up on crochet and knitting stuff.

Tonight I'm going to sit down with one of my Harry Potter books on CD (I was too late to get my wristband for the book release tonight) and sit and listen to a book while I knit/crochet something. I'm taking advantage of feeling good while I've got it, even if it is a steroid induced feeling.

I'm wondering if I should have waited till the steroids and the antibiotics were done to do my Igenex Western Blot...the meds might have had a chance to wake up some spirochetes and make them visible to a test.

Oh well...I may still have my doctor check the Lyme angle again occasionally if I have serious problems after I start the MS meds. I still do believe that I have MS, but just the fact that I've had tick bites, weird rashes, and 2 bands of Lyme bacteria makes me wonder. Hopefully my regular doctor will be willing to occasionally investigate the possibility of Lyme every once in awhile.

[RuthHinWV]

I'm so happy that my regular doctor is somewhat open-minded. I hope that test comes back with a positive, but I'm not expecting it to. I still do believe that I have MS, but just the fact that I've had tick bites, weird rashes, and 2 bands of Lyme bacteria makes me wonder. Hopefully my regular doctor will be willing to occasionally investigate the possibility of Lyme every once in awhile.
Hi Erin, I'm not trying to talk you in to believing you have a certain disease over another; however, my first Igenex tests (2003) didn't come back positive in the beginning either. I had a few bands that popped up Equivocal (not negative but not positive either). It was only after getting this new LLMD & she wanted "all her own tests" instead of relying on another doctors work that I had a second round of WB tests (2007) done through Igenex. This is the first time I've had a positive ever!!!! That was because I've been on years of abx; experts say this happens & they don't know why.

IF your tests still don't show positive that does not mean you don't have Lyme. Since you did have a couple of bands show up, then there is something there. It might be worth your while to go on abx treatment for a year or so to find out if they make you feel better. If they do, then you know its Lyme & not MS. However; if you don't have any improvement of any of your symptoms & continue to slide backward on the abx, then yes another disease has to be considered. Just remember, I'm sure you know this already, there are lots of diseases that "mimic" MS. I've done plenty of MS research in the beginning of all this, but I'm not up to speed on it any more.

I do hope & pray, for your sake, your tests come back the way you would like. I'm very happy for you that your own family doctor is willing to work with you on this; it's so important to have a doctor you know & trust. I do applaud your doctor for being so open minded; if my family doc would have been the same way he'd still be my family doc.

Take care, Ruth (***XX--Crossing my fingers for you) :)

[Erin]

Hi Erin, I'm not trying to talk you in to believing you have a certain disease over another; however, my first Igenex tests (2003) didn't come back positive in the beginning either. I had a few bands that popped up Equivocal (not negative but not positive either). It was only after getting this new LLMD & she wanted "all her own tests" instead of relying on another doctors work that I had a second round of WB tests (2007) done through Igenex. This is the first time I've had a positive ever!!!! That was because I've been on years of abx; experts say this happens & they don't know why.

IF your tests still don't show positive that does not mean you don't have Lyme. Since you did have a couple of bands show up, then there is something there. It might be worth your while to go on abx treatment for a year or so to find out if they make you feel better. If they do, then you know its Lyme & not MS. However; if you don't have any improvement of any of your symptoms & continue to slide backward on the abx, then yes another disease has to be considered. Just remember, I'm sure you know this already, there are lots of diseases that "mimic" MS. I've done plenty of MS research in the beginning of all this, but I'm not up to speed on it any more.

I do hope & pray, for your sake, your tests come back the way you would like. I'm very happy for you that your own family doctor is willing to work with you on this; it's so important to have a doctor you know & trust. I do applaud your doctor for being so open minded; if my family doc would have been the same way he'd still be my family doc.

Take care, Ruth (***XX--Crossing my fingers for you) :)

Ruth, when I got back for a follow up after I get done with the steroids (soon hopefully...I'm literally bouncing off the walls tonight...argh! and it's only day 3 of the taper!) I'm going to ask the doctor if I could do an antibiotic for a bit and see if it could wake up some spirochetes. I think my regular doctor is reading a bit more about Lyme since he started treating me, so hopefully he might be willing to try a blast of antibiotics to wake up the little buggers. I'm at least going to ask him about it.

I think I might go take a 1/4 of an Ativan (never take those, had them last fall when all this first started. never take them full strength either, so I have tons) and see if it'll stop me from bouncing off the walls. My nerves seem to all be waking up all at once tonight. I can feel my legs! (yay steroids!) and my vision is all better, but my poor little brain is freaking out because I cant sit still.

I think a little tiny bit of Ativan might just get me to sit still and not freak out my poor boyfriend when I chat with him on Skype later. He's going to think I'm having a weird psychotic break if I dont calm down before he logs onto the computer later.

I must go self-medicate now...mostly because I want to calm down, and my fingers are jumping back and forth and I want them to relax enough so I can concentrate on my newly learned knitting skills I acquired about two days ago. But, being all jumpy is a bit interesting...I've never been high before and I think this is what it must feel like..

ok, I have to shut up now....and hope the steroids taper ends soon! if I'm this jumpy for the next 11 days, I think I will lose my marbles (and trip all over them when they come rolling out of my head)

[RuthHinWV]

Erin, I can completely "see" how you are right now; steroids do the same thing to me. I'm like a super ball when I take those; hate em!!!! Also, if you ever have any kind of respiratory infection like bronchitis, those inhalers they give you do the same to me. They make my heart go crazy!!! Ativan, on the other hand, knock me on my rear! I sleep so much I can't take those. I found that out when my mother in law died unexpectedly; I asked the doctor for something for my nerves so I could get through everything. I ended up calling him back the next day to tell him I couldn't help plan a funeral when I was knocked out.

Take care, Ruth

[Erin]

now I'm getting more and more convinced that this is MS and not Lyme. I've been on a steroid taper for 5 days now. (starts tapering down tomorrow) and I feel wonderful. All the annoying numbness and weird vision problems are starting to feel much better.

The stupid vertigo is still here, and I think the fact that it's here proves that it's not being caused by the MS...I think it's something physical and not neurological causing the vertigo. (something called BPPV) The doctor gave me the steroids to (I guess) bump some of the MS symptoms down a bit and to see if the vertigo would stick around or get worse.

I dont feel sick at all. I still cant wait till I'm not taking the steroids anymore. They make me feel hyper and a bit weird. I'm not porking out on food like I thought I'd be, so I hope I dont get the weight gain problem some people get...but I am only on this stuff for something like 5 more days, so maybe that wont be long enough to get a steroid fat tummy and face.

Maybe now I'll start to get some answer as to exactly what this is and then I can figure out what treatments to take for it. Hopefully I'm getting closer to the answers!