Test & Treatment for Lyme Disease

[stellamae01]

I have been suffering from almost every symptom listed for Lyme Disease since being diagosed in 2007.  Most recently I have had seizures and cognitive problems causing problems at work.  

Does anyone have any information regarding preferred treatment other than antibiotics and pills for the symptoms.  I rarely have a day withont pain.

Help!

[cave76]

@stellamae01

How are you doing? There are people here who can offer their opinions about treatment options waiting to hear from you.

I hope you're as well as can be.

[Ricobord]

Some people with Lyme have reported great improvement and even remission with herbals only.  But a lot of people also report little to no improvement without antibiotics.  Most of the other out-of-the-mainstream treatments just offer some symptom relief. I've never heard of a cure from any of them, either.

Some one with nearly every reported symptom of Lyme, including seizures, likely has an extensive and deeply rooted infection. If it's bad enough to cause seizures, it is well entrenched in your central nervous system. Seizures can cause brain damage, and you could also be at risk of a stroke, too, not to mention significant injury by falling.  I don't mean to sound ominous, but seizures are very serious, and you'll need some serious antibiotics to knock back a Lyme infection that bad.  

You don't mention if you've been on antibiotics or not, but many people have bailed out on antibiotics thinking they didn't work, when in reality they just didn't take them long enough.  Or, they needed parenteral (IV or intramuscular shots) abx as orals weren't sufficiently penetrating the blood brain barrier.

Some think they cannot tolerate abx when in reality they're just having horrible herxing, which can be eased by ramping up from lower doses.  An experienced and compassionate LLMD will know how to do this.  (Of course there are some folks who truly have bad reactions to a bunch of meds, including allergic reactions.  However, there are several different abx from different classes of meds that can be tried.)

Have you been seeing a LLMD?  

[JackieCalifornia]

There are a variety of non-antibiotic approaches, like herbs, Rife machines, and others.  Some of them are kind of wacky, so keep your 'skeptical' hat on, but before going there, consider that maybe the docs you have been seeing just don't understand Lyme.

If you would post here a general list of what meds you have been on and what infections you have been tested for and diagnosed with, we might be able to give you some pointers from our own experiences.

Lyme ticks often (maybe 50% of the time) also carry other diseases totally unrelated to Lyme, like babesia, bartonella, ehrlichiosis, and some others.  These infections don't show up on tests for Lyme, and it takes a knowledgeable doc to evaluate your symptoms and history to figure out what you should be tested for.  There are many of these 'co-infections', too many for a doc to just run tests for all of them.  Here's the issue:  these co-infections need not only separate testing, but ALSO need different meds from Lyme.  Docs who are not Lyme specialists often do not understand this aspect.

Antibiotics are very effective against Lyme and its co-infections, if the right meds are given for the right length of time.  Except immediately after getting Lyme, the standard few weeks of doxycycline won't cut it, because of peculiar characteristics of the Lyme bacteria and their ability to hide in the body where the immune system (and antibiotics) can't find them.  That's what Lyme specialists know that other docs don't.

If you would like to tell us a bit about your history with Lyme, what you were tested for, what tests you were given (some are better than others), and what meds you have taken for how long, we can give you some comments about what we would do in your situation.  No one here is medically trained that I know of, but we've all done the dance with Lyme and its nasty little friends.

Six years of suffering is enough already -- we're glad to help with ideas.  One idea is to find a new doc.  More about that in the next email.

Take care, and take heart --

[cave76]

@ Stella

I'm not the person who should answer your question because I happen to believe in 'evidence based medicine'. My treatments were all antibiotics and that's the best way to help with Lyme.

There may be others here who won't use antibiotics that will answer.
My personal opinion, stated again, is---- if it's an antimicrobial disease (and Lyme is) then antibiotics will help.

I hope you can find some relief with your preferred method of treating.