Lyme

[susan999]

How do you know if Lyme has crossed the blood/brain barrier?

[JackieCalifornia]

I was treated ~5 years ago, and not only do the docs change approaches as more is learned, but each doc may have a different take on which meds are most effective, for reasons including which co-infections you have (co-infections being 'bonus' diseases the ticks often carry in addition to Lyme).

fwiw, I was diagnosed with babesiosis [similar to malaria] and Lyme.  

First the babesia was treated for about 4 months, with
   --- azithromycin (generic for Zithromax) and
   --- atovaquone (generic for Mepron),

and when that was done, then the Lyme infection was treated for another 4-5 months with
    --- clarithromycin (generic for Biaxin) and
    --- cefdinir (generic for Omnicef).  

That was seven years ago, and Lyme etc. is a disease still being unraveled, so don't be surprised if your doc does something different.

It's important to have a complete diagnosis so that the right meds are used.  And also keep in mind that after the thrashing your body has taken from the illness, it may well take another while to feel really good again.  I wasn't tracking it, but it was at least another year after completing treatment before I was back to my old self.  Kind of like having a baby:  the birth may be over, but you're gonna be tired for quite a while.  :)

Was treatment worth it?  Oh, yeah.  I was operating at maybe 1/3 of my usual self when I was sick, and being healthy again was worth all the hassle and the meds and so on.

Talk to your doc about side effects you encounter, like your headaches -- it may mean you need to be on another med, but the doc is the one who knows how to interpret all of that.  Don't be a hero, okay?  Your doc may, based on your report, change the meds or tell you to hang in there if it's not too bad of suggest something to help how you are feeling, because it may simply mean that the meds are working.  Keep the data flowing between you and the doc even between appointments, because only the doc can know why and what to do or not do about side effects.

Bottom line:  getting rid of Lyme and its evil little friends is *definitely* worth doing.  You go!  

[KGandShady]

Would love to know what protocol you were on.  I have the Lyme that wasn't diagnosed until recently through the igenex test...finally....after going to 9 doctors who couldn't figure it out.  Just got off a bout of meds, but the headaches are killing me.

[JackieCalifornia]

Sorry, but I'm living proof that Lyme can be eradicated.

[susan999]

Thanks for all your speedy responses. We are off to the doctor today. I am keeping my fingers crossed and have written a ton of questions.
Best to all

[wonko]

To my knowledge, testing for Lyme in the spinal fluid is not a very accurate means of detection.  However, other than getting a lumbar puncture (or spinal tap) and testing the fluid for the Lyme bacteria, I don't know of any definitive tests for whether Lyme has entered the central nervous system.

Lyme can cause brain lesions visible on MRI, but several other processes can cause similar damage, so I don't think that lesions can be definitively ascribed to Lyme.

Your doctor may be able to clinically assess if Lyme is affecting the CNS based on symptoms, but again, that would not be definitive.

Several antibiotics are capable of crossing the BBB, so even if your Lyme has, that does not make it untreatable.

Personally, I also take the attitude expressed above to focus on the bigger picture of getting well and less on the details.  Lyme is systemic, doctors know this and a good Lyme doctor will treat you accordingly.

[JackieCalifornia]

Others here can respond, but I'm not aware of any test or method of knowing for sure.  I believe it's a judgment based on symptoms of how bad the 'brain fog' is in someone with Lyme and related infections.  Some people have more symptoms in the head, others in the body, some in both.  I tend to go back and forth, but it's pretty clear that I have a fair amount of brain inflammation or irritation or whatever you want to call it, and it comes and goes, good days and not so good days, but MUCH better than I was a while back.

Personally, I don't worry too much about the specific whereabouts of the bugs in my body, because if they are in my bloodstream, they are going wherever they want to anyway, since the bloodstream nourishes the brain too.  And why wouldn't the Lyme bacteria go into brain matter?  It's a very small bacterium and is first cousin to the bacterium that causes syphilis, which was famous (before penicillin was invented) for causing dementia (for example in Winston Churchill's father).

In other words, the symptoms are what they are, and since there's no way of stopping the bacteria from going where they want, except to treat in one way or another, I don't lose any sleep over the blood/brain barrier aspect.  That may not be much comfort to you, and perhaps someone else has a better response here.

Best wishes --