Lyme test - what to do?

[bunky_k2]

Just got Lyme test and Western blot test results and they are positive. Lyme IgG/IgM Ab - 3.86 H  (normal 0.91-1.09), Lyme Ab Interp. EIA - positive.  Lyme IgG WB Interp - positive.  8 out of 10 bands tested were positive.  Single mom of 3 kids and have been feeling horrible for years, which has made it very difficult getting through each day.  Was and am hanging on by what seems to be a thread or two.  Now my regular doc is sending me to an Infectionous Disease doc and they are suppose to go over where to go from here and probably do some more testing.  My doc said something about them getting spinal fluid to see if I indeed have permnant damage and how much.  My reg doc wants me to start me on antibiotics now, because my other appt. is not for almost 20 more days, but I seen on a tv special that taking antibiotics can affect the results of tests dealing with Lyme.  So I am stuck at a crossroad as to what to do, dont think my reg doc knows what she is doing.  I don't want to start the antibiotics and then have them affect the results of the tests the specialist is gonna be doing, giving her a wrong result (due to the recent taking of anti's), which in turn gives her a wrong place to start with whatever they are gonna do with me.  Anyone been in this similiar situation?  Anybody know what I should do?

[bunky_k2]

Thanks again!  I am really not sure about the spinal thing, I am just going on what my reg doc said that the ID doc said to her.  Supposedly they will be able to tell if and how much damage has been done due to the fact of having this disease in my body for so long by doing this spinal thing.  Unfortunatly where I live, there are not many docs to choose from, as it is, I am driving an hour and a half to get to the one I am going to see.  I guess I just need to think about it some more.  I certainly don't need any more pain, have had enough to last a life time and still have.  I just hate feeling so out of control with my life, can't wait to somewhat get a hold on it again.  I guess time will tell.  God, Lyme is a big jigsaw puzzle, very confusing.  Good luck to you all!

[Marinella82]

I feel for you.
Take the medication if possable take it long term cause you will see improvements.  In your case I would say don't get a spinal tap you are already possitive why put yourself in more pain.  They won't know how much damage there is from it just if you have it in your brain and if you have brain fog and have been suffering for 10 years chances are you do.  
Good luck and stay possitive

[JackieCalifornia]

We wish you the very best too!  You've had a long hard road.

I'm no doctor, but that said, I've not read anywhere that having a spinal tap will tell you if your brain is damaged.  I think non-LLMDs use a spinal tap to possible rule out other diseases and (for reasons I don't understand) to see if there are Lyme bacteria in the spinal fluid.  They already know you have Lyme; what is gained by seeing if it's in the spinal fluid?  The treatment, to my knowledge, does not change as a result.

Lyme causes inflammation of the brain, which is why everything is foggy -- I have it to, worse sometimes than others, but definitely less than it was.

If your MD is not a Lyme specialist, you should consider finding one to supervise your treatment.  Regular, non-LLMD docs don't usually treat aggressively and often don't test for co-infections, which must be taken into account before structuring a treatment plan.

Think about it -- and best wishes to you.  You've come this far -- you can make it the rest of the way.  You know the saying 'When going through h*ll, keep going"?  Well, that applies to Lyme just perfectly.

[bunky_k2]

Thank you all so much for all the advice, help and good luck wishes.  I would probably oppose the spinal tap, but then there is the part were they and I think I might have had this going on for many years.  And I feel like I have almost gone brain dead.  I have severe brain fog, and it is weighing heavy on my job and life as are all the other symptoms.  I think in my case I really need to know if this has done permnant damage to my brain and body as the symptoms seem to just be getting worse and worse as each month passes.  I feel like I have no brain and that before much longer I am gonna be in a wheel chair.  I have suffered migraines, headaches, muscle & joint pain, numbness, tingling, mood changes all the time, severe fatigue, heart palps, had SVT, severe neck pain along with shoulders, feeling of having your limbs giving out at any time for no reason, my eye sight has gotten progressively worse over the years to the point my license now says "corrective lenses required", my hearing has gotten bad.  I have lost pretty much all my strength.  The hell is endless.  From what I have found so far, there is so much confusion about Lyme and so many different ways treatment is done, if I have permnant damage to my brain and body, I would like the confirmation atleast to tell me if the brain fog is because of the Lyme and not just me and if it is ever gonna clear up and if there is a reason for it.  I have been fighting with so many doctors for so many years to find out what is wrong with me and why I felt I was getting worse and worse.  They all put the blame to depression, having no thyroid and fibromyl.  They basically almost convinced me it was all in my head.  Like Jackie said, it's a mixed blessing finding out you have Lyme. Before the tests came back, I felt like I was about ready to give up on life as I am so tired of feeling horrible and it didn't look like there was any hope in sight of finding out why, just so worn out. I am a single mom (29 yrs old that feels like she is 80) with 3 kids (7, 11 & 14) and work a full time job (for 10 yrs) as a HR coordinator, and it all has been suffering because I never feel good and can barely move most of the time.  I have not been able to be the mom I should be for some time and has just gotten worse, (I keep telling my kids mommy is gonna get better soon and we will have a better life and I will make it up to them for not being able to go out and do fun things-for the most part they try to understand, but it's not fair to them). I luckily have a leanant boss or probably would have lost my job years ago.  I can't keep up with the simpliest tasks at home. It has just been a very long rough haul.  The only reason I found out I have Lyme is because my Aunt (who has had chronic lyme and has permnant damage) says I mimic her to the tea and pleaded with me to get the test done.  Because of her bugging me everytime I saw her, I finally asked my doctor to please do the test, if anything to ease my mind that it wasn't that and I could cross it off my list of possibilities as I have been struggling with all of these symptoms for many years.  Much to my surprise, I got a phone call from my doc office to move my next appt up to that day as she needed to see me right away about my lab work. So I went and found out I did indeed have Lyme. For the first time in a long time, I finally felt like there might be some hope.  Then finding out more about it kinda upset me for the simple fact that the doc never thought to test for it, knowing all the symptoms I had matched the symptoms of Lyme.  I feel like I have been robbed years of my life. Don't understand why she never considered the possiblity, being a doctor in all.  But I guess there is not much I can do about it now, but move forward and try to get my life back.  
I am still struggling wether to start the doxycycline she prescribed because I really do think there is quite a lot of damage because it has been attacking me for a very long time, I am talking 10+ yrs, (I wonder why I am not dead). And I guess the spinal could possibly give me the answer as to how much damage there really is, (if the antibiotics doesn't impact the results of the spinal as I would be on them for atleast 2 weeks before they did the spinal if I start taking them).  The other thing that is scaring me out of starting them is the fact that I have heard that a lot of people have gotten sicker when they start taking them, and this is the worst time I could possibily get any sicker than I have already been.  I have to move this month along with everything else going on, and my employment is at it's busiest time right now and I can't afford to miss any time. Ahhhh, just a very bad time for anything. Oh, what to do!  I appreciate everyone's thoughts and advice, it helps knowing your not alone and there are people that know exactly how you feel, cause sometimes you can feel so alone and feel like you belong on another planet and it gets tiring having people gossip about you because they absolutely have no idea what Lyme is or anything about it.  I'm glad I joined this forum, thanks again for all the thoughts and advice.  I wish everyone luck with their Lyme disease and hope everyone gets through it and gets their life back better than ever.

[JackieCalifornia]

Re Lyme bacteria in the spinal fluid:

Some MDs rely on spinal fluid to make a diagnosis of Lyme, but Lyme are not always found in spinal fluid.  I suspect it is nonLLMDs who focus on finding Lyme in spinal fluid, but as far as I know, the bacteria go wherever they like in the body, and find it easy to cross the 'blood-brain barrier' just as the bacterium causing syphilis can do.  And note that the Lyme bacteria and syphilis bacteria are both in the spirochetal group, tiny spiral-shaped bacteria.

If I have Lyme, it's not of practical interest to me whether it's in my brain or not, because if it's in my body or my brain, I have Lyme either way.  

[Marinella82]

I think I got bit either in Jan or Feb of 2009, Im not sure cause I never developed a "bull's eye."  I started getting fatique and migraines around that time but I attributed it to work or the flu that was going around.  In March of 2009 I started getting joint pain and within days I had extream swelling in my leg and so much arthritus in my back and legs I could barely get up the stairs on my own.  I never bruised a day in my life.  Suddenly you could touch me and leave huge black and blue marks.  I had trouble remembering things and trouble speaking and seeing.  The migrains got very severe so I went to a doctor.  All this happend within 3 days.  

I had a blood test and it was inconclusive for Lyme but positive for Erlichia so they put me on Doxycycline for 28 days wich made me nausious and vommit all the time.  After 28 days I felt better, all my symptoms were gone except for muscle spasms and the migraines wich I never had before Lyme Disease.  

I went back to the doctor for a follow up and she said they will go away on thier own or I just have common migraines.  So I lived with the "common migraines" till August of 2009 when I was hospitalized for a week.  I kept having and still have violent fainting spells (dizziness followed by fainting wich brought on a seizure like shaking and irregular heartrate).  During this time I felt like I was burning up and the back of my head felt like it was going to explode.  My body would be cool to the touch but my neck would be hot.  I would have seats followed by chills.  My temperature was normal and blood test for Lyme would only have 1 bar out of 10.  So the doctors had me get every test you can think of and thought I had a brain tumor even though they didn't see one in the MRI or CAT scan.  They wanted to start me on cancer drugs but my nerologist stoped them and had me get a spinal tap to check for spinal meningitus.  

They did a Lyme disease DNA test on my spinal fluid wich had to be tested at another lab and takes about 3 months.  It is not painful but it uncomfertable during the procedure but I did develope spinal headaches from the spinal tap and it trumps any pain I have ever had in my life.  The DNA test came back positive but it was already November of 2009 and by then it was too late cause I have developed perminant cardiac damage and a brain infection.  You have a positive test it is up to you if you want to go through the pain of a spinal tap.  It left me unable to work for a month.  If the Lyme is in you spinal fluid it is much more serious then if it is in your blood because it can actually cause spelling in the brain and an infection that can cause serious nerological problems.  I developed vasalvegal syncope and numbness in my left side of my body from the Lyme.  

Good luck and I hope it is not too late for them to attack the disease and get your life back.

[JackieCalifornia]

Welcome to our corner of MedHelp --

It's a mixed blessing getting positive Lyme test results, but there are many who have Lyme who don't achieve positive results, and so have a hard time getting treated.

I am guessing that your regular MD doesn't think starting abx will cause a problem for the infectious disease (ID) doc -- that sounds reasonable to me (but I'm not medically trained!) because the tests you have already had done are what they are, and the ID doc would (I would think) rely on those.  

Were you tested for other tick infections that often come along with Lyme?  Those infections don't show up in the same tests as Lyme and they often need different medications.  

It is questionable in what I have read whether a spinal tap is needed; I read different things and perhaps others here can respond.  I didn't have one and it wasn't needed to confirm the diagnosis of Lyme.  Lyme bacteria are not necessarily found in spinal fluid, but non LLMDs tend to like to do them anyway for reasons I don't understand.

There are usually two Lyme tests done:  Western blot and ELISA.  One is done first, but because it sometimes says 'positive' when actually you aren't infected (that's called a false positive), then the second one is done to confirm, which often produces false negatives, and between the two tests, the docs think they can accurately figure out if you are infected.  I'm guessing both were done.  8 out of 10 bands is pretty positive.

See what the ID doc says, and come back and visit with us here.  The main industry group for ID docs, Infectious Disease Society of America (IDSA), has taken a firm position that only a few weeks of antibiotics are needed to cure Lyme, but not all docs follow that approach, so you'll have to see what your ID doc says.  There is another group of MDs, called 'Lyme literate MDs' for shorthand, who take a longer view and believe longer treatment is needed than the ID docs usually give.  

But that's a discussion for another day.  You have already made great progress in getting a positive test -- in your situation, I'd take the antibiotics as prescribed.  You hang in there, okay?  Come back any time -- let us know what happens and how you do.