Lyme Disease
 

Hi All,
Just wanted to update you on the status of my relentless, miserable high fever and elevated liver values a couple of weeks ago. Turns out I had/have Lyme Disease, urghh. Dag, doesn't having MS get me a free pass from all the other nasties out there? :D

The good news is that despite my now former GP running a different blood test every few days without treatment and not considering that a Lyme result just below the positive range might warrant further exploration...I decided to advocate for myself when my liver values started rising and I gained 8 pounds in 5 days despite not eathing hardly anything. I took the long drive to a big hospital and within 24 hours of their wonderful care and antibiotics I felt so much better.

Been good ever since and thank 'the powers that be' because if I could have mustered the strength I would have offed myself by about day 5. Haven't had a high fever since I was a child and OMG did I forget how debilitating it can be.

Hope everyone is good today and thank you for all well wishes when I posted about this originally. Jules

:grouphug:

Oh Jules, I am so glad you went for a second opinion. Thanks for updating and I'm happy to hear your on the mend! :hug:

Jules

So happy to hear that you finally got taken care of! Bad GP. I hope you let that doc know just exactly what the situation was/is!!

Get some rest and get better!!! :hug:

Me too, Jules..:hug:

Yeah, you would think so! So happy you are on the mend! :hug:

Isnt Lyme one of the mimickers of MS? Could you have had Lyme instead of MS all this time?

Jules, I'm glad to hear you are feeling a bit better, and got a second opinion! Take it easy and get a lot of R&R!

It definitely is and I am glad that I was treated before any Lyme related neuro stuff started happening!

As much as I would love to give it back I'm pretty confident I have MS. Both my earlier Lyme tests were strongly negative and my MS seems to be as close to text book RRMS as there is with eye issues that have resolved and some paresthesia but none of the joint problems that I think are pretty common with Lyme.

LD sucks! Only had it once, but everyone in my sister's family seems to get it at least annually. Be kind to yourself. I was really tired for quite awhile even after finishing 3 weeks of abx!:eek: Glad you were able to catch it early on!

I had Lyme tests (the ELISA and the Western Blot) that both showed a couple of the Lyme specific bacterias, but not enough of the bacterias for my problems to be diagnosed as Lyme and not MS. I think on one of the tests, I had 2 of the 3 bacterias needed for a positive Lyme test, on the other test I had 3 of the 5 needed. Irritated me that they never investigated that earlier, since I'm guessing that if I had a few of the bacterias show up on a test, that maybe I've at least been exposed to a Lyme infected tick.

I'm still assuming that the neuros were right and that I have MS, but I still have the suspicion that it may be Lyme. But I guess once you get the neurological symptoms, they cant do a whole lot for it after that. Lyme is still not understood very well, similar to how they still dont know a whole lot about MS.

besides the fact that I've had so many antibiotics in the last two years for various infections that my body's supply of natural flora is all screwed up and now I've apparently got overgrowth of the bad bacterias. I dont want to go near any antibiotics any more.

At least now that I've gotten some of my teeth worked on and gotten most of the low grade dental infections dealt with (two more visits to go!) I'm feeling a lot better neurologically now. I think most of my neurological stuff has been related to the dental issues I've had.

Thanks for the update, Jules. That's pretty sucky, glad you're on the mend. I agree, we really should get a free pass from other junk; mods? Can you arrange that for us?:cool:

Jules
Happy you are recovering nicely. Keep feeling better. Good job standing up for yourself too!

:hug:'s

Jules, I am so glad you caught this!! Big kudos to you for being so proactive and big :hug:s to you for a speedy and complete recovery! It sounds like you caught it early -- for how long are they recommending antibiotics and what kind?

"If medical treatment is delayed, lyme disease can cause arthritis, heart, neurological, and visual problems, often, many years after the infection."

http://www.msha.gov/illness_preventi...ymedisease.htm

- Lyme can be disseminated in Time and Space
- Lyme can cause signal abnormalities on MRI scan of the brain.
- CSF will show positive PCR (Polymerase chain reaction)http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf
- Lyme (Borrelia burgdorferi) can show O-bands
http://www.diseasesdatabase.com/resu...ClassSort=True

About testing for Lyme:

http://www.canlyme.com/labtests.html

Any idea when/where you picked up the Lyme?

Cherie

I'm one of those people who definitely believes there are some MS patients walking around who've been misdxed. I'm under the impression though that high fevers are associated with the primary stages which is why I didn't go the conspiracy route here. :)

Re-infection is a whole 'nother story though. It's very possible and I've seen people to whom this has happened. :(

Thank you for being a lady Miss Cherie, I have had a couple of my crude friends ask if I was rolling around in the bushes! :eek: I've been bitten by two tics in the last few of months while walking my pooch in the woods.

I didn't think the Lyme type neuro issues remitted but were more constant, is that wrong?

Bearygood, I've been on oral Doxycycline for 14 days and will be seeing an infectious disease specialist for a follow up.

Cindy I'm writing the proposal today to ensure that only 1 stinking disease per person will be allowed in the future.

Thanks again to everyone who replied. The moral support and insight from this group is incredible!

:grouphug:

Jules, this is an excellent question. I've heard people refer to their sx as "waxing and waning" but never thought of it in terms of complete remission. I'd like to know the answer to this myself.

On another note, one thing I constantly read about is the importance for checking for co-infections (Babesiosis, HME and HGE types of Ehrlichiosis, Bartonella and Mycoplasma) so make sure everything's been covered when you go see the doc! As you probably know, most Lyme folks say that the way to go in terms of labs is IGeneX. They'll send you a free kit if you call them. They're very helpful and if you explain your situation they'll recommend which panels to do.

Gee, if it's confirmed that Lyme does completely remit, I might be sending in my own kit! :eek:

I have one of those kits that tests for all the co-infections. I just havent gotten the blood draw for it yet...the test costs about $600 (out of pocket, Igenex doesnt take insurance)

My regular doctor said that when I'm ready for the test, he'll do the blood draws for me, for the cost of a lab visit at his office. (lab visit is about $15 - $30)

Woohooo!!! Here I thought we were going get a juicey, exciting story out of you . . . but you just leave us hangin'.

(I live vicariously, what can I say? :p)

Yes, it can wax and wane (dissemination in time) as per the 2nd link in my prior message. It also says:

"Many authorities list Lyme disease high on the differential
diagnosis of MS as a disease of young people capable
of causing white-matter symptoms, sometimes relapsing and
remitting, occasionally with MRI changes mimicking MS."

It would be rare indeed, Jules, that Lyme would be misdiagnosed as MS . . . but I've heard of it happening on the forums. :cool:

Cherie

Jules, I'm glad you are feeling much better and that you went for that second opinion. Yikes. Lyme and MS is just not fair, right? You would think one would be enough!

When I first got diagnosed with MS I was running low grade fevers and had optic neuritis and dizziness. They kept saying the fevers weren't part of MS and they were confused. Oh yeah, and I had been in Washington DC and had a strange rash for a couple of weeks. I swear something bit me. So the docs thought it could be lyme because the bacteria can actually get into your neurological system and cause eye issues and dizziness. I don't know how much reading you have done about lyme but there is a big controversy in the field between several groups of doctors and the reliability of tests. The lab they used in the hospital (when I was admitted for IV steroids) said no lyme. But on my own I sent my blood to IgeneX in San Francisco and it came back positive for lyme by CDC standards! In other words, I had all the right bands that count for a lyme diagnosis according to the CDC. I found a doctor who agreed with me. I went on doxycycline and what do you know--the fevers went away! With neurological lyme issues the lyme literate doctors also recommend a month of IV antibiotics. So I did that too. Not fun--I had to have a PICC line put into my arm for a month. But it made me feel even better than doxy. I was quite proactive and aggressive about getting the correct treatment. I figured if I really did have lyme I wanted to knock it out for good before I began MS treatments. Lyme symptoms can definitely wax and wane.

Anyhow, I think I had lyme and MS together. The spinal tap, the visual evoked potentials, and classic Dawson's finger lesions screamed MS. But the antibiotics definitely made me feel so much better. And now the Tysabri is giving me the rest of my energy back.

I'm glad you got this straightened out. Those fevers are just the worst!!!!

And stay away from those tics!! :D

This has been a very interesting thread. Thanks for sharing your story, Jules...and I'm really glad you're on the mend, at least from the Lymes.

It is so difficult, with all of these weird diseases that dress like one another, to get an answer, isn't it? It frustrates me, as I'm sure it does so many of you.
Sure wish the medical community would get the whole thing straight and get the knowledge they need to test us for these things, instead of shooing us off with a dx of depression and throwing rx of ADs at us as they usher us out the door. What if it's Lymes, MS, or something just as weird?
We, as patients, just want to make sure that the docs have it right and that they're not giving up on us...is that so wrong?:confused:

Again, Jules, thanks for letting us know how you're doing...take care of yourself!!:hug:

I should've clarified my question better. I know that Lyme sx remit as in the aforementioned waxing/waning but what I meant by complete remission was wondering if neurological sx can actually disappear for years at a time. That's one of the reasons I never did my kit -- I have little reminders here and there but I guess I felt that if it was Lyme I'd have more going on without so much time in-between. (Though granted, I haven't been dxed for all that long...) That said, I went to throw my kit out the other day and couldn't bring myself to do it! It's been sitting in my kitchen for over a year and of course now this discussion means I definitely won't be throwing it out anytime soon, LOL.

Since the time I've been dxed I've seen several people who suspected MS go on to get an Lyme dx and I think 2 people whose MS dx was reversed. As mysterious as MS is, I think Lyme might have it beat! I know the problem with testing is also that there can be false postives as well as negatives.

Natalie, that's quite a story! :eek:

Jules, seriously, I know the fever stunk but it seems like it's a really good thing you got it! I know that not everyone gets a fever or rash so if anything neurological appeared you might have just chalked it up to MS doing it's thang!

It's a good thing you were proactive Natalie. It could have been disastrous otherwise. It was for the daughter of a friend of ours. She went untreated for almost 2 years before the docs finally tested her for Lyme. She was hospitalized for 4 months once they discovered what it was. And we live in perfect Lyme territory! They never once suspected it! Go figure...

She's doing very well now.

4 months in the hospital?? Scary. Lyme can be nasty if it goes untreated for awhile. I'm so glad your friend's daughter is doing well now.

Not a lot of people get lyme in TX. But my aunt is an E.R. nurse in Maine -- she spoke to the infectious disease doctor at her hospital and he thought the IgeneX lab was valid even thought my infectious disease doc. here thought it was a joke. But I found a lyme literate doctor, drove 3 hours to somewhat rural TX, and aggressively pushed for IV antibiotics. I had to stay overnight in a hotel for 3 days to insure everything was okay at the start of the treatment. But I really wanted to wipe it out of my body before I started any MS drugs. And I figure if I didn't really have lyme then nothing really lost in the long run. Fortunately, my insurance paid for it all as it is costly.

There is a Dr. Brian Fallon at Columbia Univ. who recently started a lyme clinic. He believes there is such a thing as chronic lyme (again people debate this). He is a psychiatrist and does a lot with neurological lyme stuff. He also feels that longterm antibiotics, particularly IV antibiotics, can be helpful for those people with stubborn infections or neurological lyme problems. One of the nurses that came to my house to check out the PICC line said she used to work in Virginia and she had seen some terrible cases get miraculously better (people who couldn't walk, think, or talk) after months and months of IV antibiotics.

Anyhow, maybe if I had not gotten the rash and fever while in Washington DC I wouldn't have caught the MS as early as I did...because I had never had any MS symptoms that I can think of -- and I've racked my brains to go back in time and try to see what I could recall and there is nothing. Sometimes I wonder if the mono or the lyme triggered MS. Guess I will never know.

But like you Jules, I thought, what rotten luck! MS and lyme.