How do you deal with lyme?

[kikos11]

Hi everyone,

I'm new to this forum and was hoping to get some answers... I've had a lot of symptoms assimilated with Lyme disease for the past 5 years. I only recently discovered that I had the disease; well more precisely the tests were inconclusive but clearly showed 3 active co infections. The Dr. told me that after a while, this is usually what happens. He prescribed 2 types of antibiotics and a lot of different drugs to go with it (antidepressant, anti inflammatory etc) and said I should do the treatment for at least 6 months. I've been reading a lot on the matter and feel that taking antibiotics for that long might not really be what I need. Also, I don't know if I did all the tests necessary to see what is really going on, especially after this long of a period. I feel he just gave me what he usually gives his patients, without inquiring more about my current state. I feel a bit lost and would appreciate any kind of advice. Thank you.

[kikos11]

Yes, all things are chemicals. Didn't think about that, will make sure to brief him. Thank you!

[JackieCalifornia]

You're quite welcome.  Remember that things from the pharmacy and things from Mother Nature are all chemicals, and they should be given equal respect.  Be sure your MD knows *all* of the non-prescription meds you are taking, just so there is no conflict among them, okay?  Take care!

[kikos11]

Again, thank you all for your suggestions and advices, they have been very helpful. I think I will stay of the PPI and antidepressant and will take the NSAID if needed. I read burbur detox and pinella can be an effective way to get rid of the toxins. Chinese herbs seem to help as well. I guess the important thing is trying to educate ourselves the best we can. Thanks again and will keep you posted.

[JackieCalifornia]

You say:
----------------------------------------------
"Following are the results:
-- Babesia ducanti IgG 80;
-- Ehrlichiosis chafensis IgG 40;
-- Anaplasmosis phagocytophilum IgG 40;
-- Bartonella henselae IgM 20, IgG 40 and low vitamin B12 levels."

That is certainly a fair number of infections, and each one can weigh you down a bit more.  I had two co-infections, Lyme and babesia, and that was plenty!

You say:  "there are basically 2 schools of thought, one that believes in prolongated antibiotic treatments and one that advocates such treatments won't work because after a certain time, the bacteria develops additional shields."

A good Lyme doc would probably prescribe both antibiotics and an additional medication to break through those shields you mention.  The 'cyst-buster' meds (there are several different ones) are used to break through the bacteria's outer protective layer, so the regular antibiotics can then reach in and kill the Lyme bacteria hiding in the cysts.

Depending on your infections (since the ticks are very generous with how many they give us), different docs will use different antibiotics.  You say, "I have no problem taking the antibiotics, but is taking the NSAID and anti depressant mandatory?"  I'm not medically trained, so don't rely on me, but ask your doc at your next appointment if both NSAID and antidepressants are necessary.  NSAIDs are supposed to help reduce swelling and irritation, but not everyone needs them ... depends on which infections are present and how each person reacts to the infections. Definitely a question for the doc just to get his/her thoughts and views.

You also say, "I've had off and on pains on the upper left torso side during the last 2 years, always felt like the heart rather than the lungs and now assume it was one of the manifestations. I guess I'm not comfortable with the side effects these drugs can have... "  What does your doc say about these side effects?  It could also be something other than medication side effects, and I would ask my doc to check it out.  

Lyme and perhaps some other infections can cause issues with the heart and other organs, and your doc would know what to look for.  If the doc doesn't have an answer that seems reasonable, then consider getting a second opinion ... docs sometimes overlook things without meaning to.  If the side effects continue or get worse, then I'd go see a doc sooner ... and if it is feeling like heart-related symptoms, then consider seeing a heart doc (cardiologist) just for another point of view.  Lyme is sneaky and likes to hide in odd places in the body.  Best wishes, and let us know how you do, okay?  

[grdner]

Yes, these bacteria form what are called biofilms to hide behind.  It's like the scummy plaque that forms on your teeth between brushing, and it's very effective at hiding the bacteria from your immune system.  I would have thought the painkiller would be if you need it, and unless you are suffering from depression now, I personally would have the same reaction as you regarding leaving that one in the bottle.  Your primary mission is to get rid of the bacteria.  
My LLMD does a treatment regimen for 2 months at a time, and then we adjust depending on how it's going.  And last appt he had just come back from the ILADS conference and I think had learned some new stuff that he incorporated into my treatment.

Anyway, it would be reasonable to treat with abx for a month or 2 and THEN add a "biofilm buster" a little later so that your body does not immediately get overwhelmed by too much dead bacteria and the toxins they release.  Biofilm busters are available without prescription, but I would not add them at the beginning or your treatment.  I am a week on then a week off  of Lactoferrin (2 twice a day) and xylitol (1-2 tsp in a cup of water, you can add lemon and then it's pretty good).  The two work much better together than apart.  You could also try lumbrokinase, which is another effective biofilm dissolver.  Beware herxing, though: if you cause too much bacteria to be exposed and killed at one time your body will let you know in no uncertain terms (and that painkiller might come in handy).

There are basically 2 choices for killing the bacteria:  prescription abx and herbal microbials.  I was on Rx for 4 months and now am on herbals.  Surprising to me, I am finding herxing from the herbals harder to manage which actually tells me that they are quite effective at killing the little Lyme buggers.  But the abx did a wonderful job of knocking down my symptoms in general. I would strongly suggest a really top-notch probiotic a couple times a day no matter what choice you make regarding the bug-killer.

You have my sympathy with 3 co-infections. That's enough without the Lyme!  You may also find that your dr. is treating the 3 definites and waiting to see if that takes care of your symptoms, or if you then need to pursue the Lyme.

Treatment takes a long time, and pretty much the longer you've had it the deeper they've gone and the longer it takes to get rid of them.  6 months would be nice, but see how it goes.  It may take longer.  Remember it's worth it!!

Good luck!

[kikos11]

Thank you all for listening. Yes, I completely agree, I always keep copies. Following are the results: Babesia ducanti IgG 80; Ehrlichiosis chafensis IgG 40; Anaplasmosis phagocytophilum IgG 40; Bartonella henselae IgM 20, IgG 40 and low vitamin B12 levels. It's all very new to me, but what I am understanding is that there are basically 2 schools of thought, one that believes in prolongated antibiotic treatments and one that advocates such treatments won't work because after a certain time, the bacteria develops additional shields. The treatment I was given is Amoxicillin (2 capsules twice daily), Clarithromycin (1 tablet twice daily), Amitriptyline Celecoxib and Dexilant (1 capsule a day). I have no problem taking the antibiotics, but is taking the NSAID and anti depressant mandatory? I've had off and on pains on the upper left torso side during the last 2 years, always felt like the heart rather than the lungs and now assume it was one of the manifestations. I guess I'm not comfortable with the side effects these drugs can have... Thanks again for the support!

[mojogal]

I was misdiagnosed for 22 years but had lyme and 3 co-infections. It's now much worse and has caused many other problems.

At this point I am doing abx and an herbal protocol and then going to a new LLMD after the holidays and have been treating for almost 4 years.

A good LLMD will base his info on clinical diagnoses instead of a bunch of tests.

Good luck

[kikos11]

I m sorry to hear that.. Dr. sometimes just treat you as if you were another number. Hard to find someone who takes the time to listen. Hope you fell better.

[JackieCalifornia]

Welcome to MedHelp Lyme -- sorry you are here, but glad you found us -- we've all been through some version of what you are going through.   ----  Do you have copies of your test results that confirmed Lyme?  I learned to *always* get and keep a copy of all my test results, because sometimes another doc will want to see what the tests were, what the results were, and what treatment(s) you were taking.  ...  About your tests being inconclusive, that is not uncommon in Lyme.  Your test results will state what ailments were positive and which were not ... It will also show what specific tests were run, and that is important to know.  Also, keeping your own copies of results may be VERY helpful to future docs, in case you change docs or see another doc who needs to know what your test results were, so the doc can figure out what might be going on.  Lots of reasons to keep a file of all test results.   ---- About taking antibiotics for 6+ months:  is your doc proposing that to treat Lyme, or something else?  If it's to treat Lyme and any other infections often carried by the 'Lyme' ticks, then taking it for months is very common ... the reason is that bacteria are most susceptible to being killed by the meds at the time that the bacteria are reproducing and their cell wall is disrupted to split one bacterium into more bacteria.  Also, six months of treatment does not sound out of bounds to get rid of Lyme and also any other infections the Lyme ticks carried.  ------
You say that you are 'reading a lot' -- what are you reading?    What tests did the doc run, and what were the specific results?  All these things are important so that you can know why the doc is prescribing what he is giving you.  So far, your doc has been doing things similar to what my Lyme doc did.  --- Also, what tests do you think your doc should have run on you that were not done?  If you will share all this data with us, we can tell you how it compares to how our diagnosis and treatment process was handled.  ---   We're glad to share our experiences and views with you, if it's helpful.  Best wishes to you!