Positive Lyme labs - am I out of limboland now?

[Hope75]

Well, it's prob. not MS.  I have posted on here in the past and I just wanted to update and get opinions on the latest.  I got Igenex labs to do a Western Blot for Lyme Disease.  It come back positive by the lab standards AND CDC standards.  I am positive for 3 bands IgM and 1 IgG and one "indeterminate" IgG.  I am "Indeterminate" on the Lyme IFA.  I had a positve ELISA for Lyme.  My neuro wants to get another MRI to look for any new lesions (have had one, non-enhancing in corpus callosum for years).  He wants it done on a 3 Tesla with and w/o contrast: brain and spine.  Then, we are looking at treatment options for Lyme.

I have learned that Lyme is a huge MS mimicker.  I think I just limboed over to the Lyme disease side after getting those results.  Thoughts?  It is a very controversial subject among docs and insurance companies as they don't want to pay for treatment.  At least I have a direction to move in.

[Amyloo]

Hi Hope,

I treated with the MS DMD Copaxone for one year, and continued to decline.  When I told my neuro this, and also that I just felt "poisoned" inside, or like my blood was toxic I was so sick, he just said "well, maybe you have a faster disease process than others".

I have stopped Copaxone for the meanwhile and am continuing the IV abx.  I am getting better, but slowly.  The best probiotic you can find is a must; get one that is kept refridgerated.  Also, ask your dr. about the prescription "Actigal" whilst on the ceftriaxone; it is a med to help protect you against gallstones.  I have not had issues with the med, the infusions, the PICC line, nothing.  My arm hurt for about three days and now I don't even notice it.  Cut the foot off a tube sock and slide it over your arm.  

I am scheduled to go for a new brain and Tspine MRI here shortly; haven't had one in a year and a half.  We shall see.  Oh, be sure and get tested for coinfections as well; Babesia is a nasty one.  God bless you.

[patientx]

I'm not quite as enamored with Igenex, but I will reserved my comments on them.

I wasn't too sick with the C-Diff.  I had read about it in advance, and went I started having the symptoms, I suspected what it was.  I had the mild diarrhea, but I was also running a slight temperature, which I haven't done since I was a young child.  Tests (which I won't mention since they are pretty gross) confirmed it was C-diff. I caught it pretty early, so maybe that's why I was able to get rid of it with only 1 course of Flagyl.  But, as soon as I started taking the Flagyl, I also started the Saccharomyces Boulardii twice/day, and continued for a month after the Flygyl was done.  I didn't want to take any chances.  I also cleaned with bleach everyday for about a week.

[Hope75]

I'm not an MD, but if it were me, I would get tested for Lyme by Igenex Labs and nobody else.  I asked my general practitioner to give me this lab and he said no also.  So, I went to my neurologist and he said yes.  I tested positive for the ELISA (Lyme screening) and then negative by two Western Blots done by labs other than Igenex!  Two "negative" tests!  Now I'm suddenly CDC positive?  Igenex is the only way to go for Lyme, so in my humble opinion, you haven't ruled it out yet.  Igenex breaks down your results to show the bands you test positive for, whereas Labcorp, Quest etc. just say neg or pos, at least from the results I received.  

When I was in limbo with the MS question, I was lucky enough to get all MRIs paid for by insurance, so I'm sorry you have to pay out of pocket.  That really stinks.  But, if you can swing the price, I would get the brain and spine with contrast.  Leave no stone unturned.  You already have loss of brain mass - I'm not sure I know what would cause that (seems like I heard that happens to alcoholics as one example? - not saying you are, it's just the only place I've heard it - I'll have to google that:)  I have had contrast too many times to count, maybe I should have looked into it, but I'm not any sicker than I was before.  I think you'll regret not getting the whole thing done at once.  If you need $, ask if they offer Care Credit - I believe they can loan you money for medical procedures with little or no interest rate.  Also, why wouldn't your insurance pay?  If your doc insists it's medically necessary, I don't think they can deny as easily.  They'll ALWAYS say no, but the squeaky wheel gets the oil, so SQUEAK as loud as you can.  :P

Patientx - thanks for the info.  I'm really really worried about C-Diff since I saw my husband almost die with it, literally.  I'm petrified of getting it.  How sick were you with the C-Diff?

[patientx]

You may already know this, but in addition to probiotics, you may also want to try something called Saccharomyces Boulardii.  It's sold under the brand name Florastor;  Jarrow's also makes a version.  They use it in Italy for patients with C-Diff; it is thought to help prevent toxins from the bacteria from sticking the intestinal walls.  But I think it might also help with preventing a C-diff infection.

I took it when I got C-Diff, along with one course of Flagyl.  Don't know if it was the Sacc B or not, but it sure didn't hurt.

[MsWobbles]

Thanks for your concern and suggestion about re-investigating Lyme.  

No, I haven't gone to anyone else after that infectious disease MD about the Lyme possibility.  I even asked that physician if he would consider just prophylactically giving me the antibiotics to see if they would cause a change in my chronic fatigue and weakness, but he said "no."  I was willing to try anything (except another spinal tap -I'd never do that again - made me very sick - but with no headache oddly enough).

Anyway, I have been busy having everything else ruled out - and it all has been ruled out except for MS.

So at this point I'm still working on ruling MS in or out.  I have an appointment with a new neuro in my area and am looking forward to hopefully going for the 3Tesla MRI of the brain and spinal cord (never had the spine done before).  I'm going to have to pay for it out of pocket and can't decide whether to have them both done at the same time or to just do the brain first (hoping it will show enough lesions) so then I wouldn't have to pay for a 3Tesla of the spine. I have documented inexplicable brain mass loss. The downside is that I would then have to be exposed to Gadolinium twice if I have two separate studies done (and I've read bad things about exposure to Gadolinium and feel it should be limited).  Any suggestions?

WAF

[Hope75]

You guys rock.  Thank you Quix, for quelling my fears about getting a PICC line for Rocephin.  From what I have read, the blood-brain barrier theory makes complete sense.  Why would a bacteria, like the one that causes Lyme, just behave and not invade other tissues, etc when the bacteria is in the SAME family (spirochete) as syphilis??  They didn't know that penicillin would cure syphilis.  Neurosyphilis was a nasty illness to witness.  What makes this spirochete any different?  Speaking of it loving the peripheral nervous system - I have peripheral neuropathy, go figure.  2.5 yrs later and I have answers, finally, but only due to my persistence.  If I listened to every doctor without question, I would be still in limbo.  

Its interesting, my husband had C-diff due to being a CT tech, getting pneumonia, taking heavy antibiotics and bam!  He lost 15 lbs in a few weeks, I thought he was going to die and we didn't know what was wrong with him.  Again, after not listening to the docs (they said stomach bug, but they don't last that long, hello) I did my own research and came in with a 22 page explanation of C-Diff.  He's a health worker, had the antibiotics and now has the symptoms.  He got better only after a course of Vancomycin.  His first course of Flagyl did nothing.  So I am unfortunately familiar and quite gunshy of this infection, yikes!  I have some probiotics from his experience and some heavy ones from a local health food store.  I will be on top of that!

WAF - I'm a little concerned too.  Hop over to the Lyme forum if you want to show them (us now) your history and see what they have to say.  I don't know if I would take Lyme off of your table just as Quix says.

Thanks again guys.  I'll post the results of my MRI just for reference.

[missy142]

Hope,
I have never had Lyme's was tested last year negatively.  But just to echo what Quix has said;  I live on Long island and grew up here and have always been told by any md here I have asked that "no there does not have to be a rash, and YES it can become chronic"  and I believe then it is much harder to tx and symptoms different.  My nephew was dx'd with it and had many problems for a long time.  Fortunately on the bright side he is very healthy now.

missy

[Quixotic1]

If it is Lyme that is causing your CNS lesions then you have NeuroLyme with CNS Invasion.  Lyme as a matter of course "loves" the peripheral nervous system.  When there is evidence that the bug has gotten into the brain and spinal cord, you have to use an antibiotic that will get there.  That means it must penetrate the Blood-Brain Barrier.  I agree with the initial use of high dose IV meds - like Rocephin.

Yes, I am aware of the whole train of thought that says that a low dose of an oral med like doxycycline "penetrates" the BBB.  That just means that "some" can be found in the CSF.  If I threw some kid's prescription of amoxicillon into a wading pool, it's presences could be detected.  But, science has shown us that in order to kill bugs in the CNS you need substantial CSF levels.  That is obtained by IV use of potent antibiotics - again at least initially.

Please, be vigilant about the use of strong probiotics during this therapy.  Otherwise you are looking at severe diarrhea and yeast overgrowth, plus the chance for a potentially deadly superinfection with a bug called "C. dificile."  Amy can wlak you through a lot of this.

WAF - your history is concerning.  Even though this was 6 years ago, you may still be looking at a chronic Lyme infection.  That ID specialist was woefully unknowledgeable about Lyme.  Some 30% (or more) of people never have a rash, and yes, it can become chronic.  Have you reinvestigated the Lyme possibility?

Quix

[MsWobbles]

Dear Hope,

I had a similar experience to yours some time ago.  Was really excited because my primary MD said I tested positive for Lyme.  He sent me to an "infectious disease specialist" who, after evaluating me, said I did not have Lyme.  First of all, I had never had a rash.  But the main reason he ruled me out for Lyme was that my symptoms had been chronic - for years. According to him, Lyme is not a chronic disease - it is acute.  Who knows if he was right or not - I only know that that was what I was told and it turned out to be just another dead end for me.

WAF

[Hope75]

Oh wow, thanks for your comments.  I feel better about the PICC line now (and glad I am spelling it correctly now:).  So did you ever get meds for MS and what did they do?  Did the abx make you herx or feel better, or neither?  Sorry for all the ?s.  Thanks again!

[Amyloo]

Hi Hope,  Sorry/glad for your answers.  (Hows that for a fence straddle?)  I was (mis?) dxed with MS about a year and a half ago, and also have a CDC positive lyme test.  I, too, am being treated with IV abx via PICC line; really nothing to worry about I promise.

I have lesions on my brain and T spine also.  I really wish you the best with your treatment course, and if I can help you or answer any questions let me know.  The politics of the disease are stupid; just get better.  In doing your research you'll no doubt read things that you will agree with and disagree with.  Run it all by your doctor and do what makes sense to you.  God bless you, Amy

[kmil1999]

Congratulations on getting out of limboland MS wise, but from your post it sounds like you are still going to have to fight.  Why does it have to be a fight to get treated for diseases.  Good, goodluck!!!! K

[Hope75]

Thanks guys.  I am concerned, of course, of the course of the disease.  However, it feels good to be out of limbo.  I will be getting another MRI soon, so I'll check in and give updates, since this is such a great MS mimicker.  I am scared a bit of the treatment as well:  Pic line with rochephin (antibiotic) for several weeks/months.  Yikes!  This seems a bit invasive and, again, its controversial.  Most docs say oral anibiotics are fine.  Mine doesn't.  I want them to be aggressive, so I guess I'll give it a try!  Thanks again and yes, I will stay a part of your community and hope I can help any other "limboers".  Maybe some will defect over to my Lymie side;)

[Quixotic1]

Well, my friend, you clearly have a Lyme infection and it needs to be treated.  The big controversy is how long you need treatment for - three weeks, three months, three or ten years.  I don't know the answers.  But, get started on treatment.

Now, do having contracted an infection mean you don't have MS?  No, but it is always best to try to answer medical questions with one answer.  It sounds like your Neuro is onboard with it, but keeping his mind open so for now you are in good hands.

You know that you are a member of the MS Mob Family and will never be allowed to disengage yourself from us, so no matter who you end up hanging out with.

Congratulations, you are officially out of limbo!

Quix

[essdipity]

Hi, Hope. My totally amateur assessment is that you do have Lyme. I'm sorry I don't remember all you symptoms, but I'm assuming that in addition to the more MS-like ones you're having systemic ones too. That does sound like Lyme, and you've had all the blood analysis there is.

It certainly won't hurt to do another MRI to look for new lesions, and your disease needs monitoring no matter what it is. I'm sure Quix will check in and give her more professional assessment here, but meanhwhile, if I were you I'd start looking into treatment options right away.

Knowing that this is controversial, you'll need the best thinking as you proceed. I hope you can get that and avoid all the politics of the subject. Best of luck to you.

ess