What abx combinations have worked for you against disseminated Lyme?

[middleeuropean]

Hi, I'm new here - and to the whole posting-on-message-boards thing... I'd be really grateful for any information that might help me forward! I was diagnosed with Lyme in September, about 6 wks after suspected tick bite (which was in central Europe, but am living in the UK). I had unusually high blood pressure and a rushing feeling, was prescribed 2 wks doxy which made me feel completely wiped out at first, but by the second week went back to feeling fine. Then about a month later lots of weird symptoms appeared, temporary loss of vision, tremors, a giant rash (which I was told is not due to Lyme). I wound up being given IV fluclox for a three or four days (which seemed to help) and had lots of tests which came back negative. Finally a Lyme test done at that time came back pos in one band, and I got put on doxy for 3 weeks `just in case'. After a few days some of my symptoms recurred in a more severe form, including high blood pressure again, some kidney symptoms, brief reappearance of circular rash, followed by major pain down right leg which is just continuing and getting more persistent. So two possibilities: 1) It could be the abx are working and it's a herx, but I need to continue taking them for much longer than 3 weeks (as the symptoms haven't cleared). Or 2) the abx are not working and the infection is getting worse, and I need to go on a different ab  (or combination!). I'd love to hear your opinions.., and especially explicit suggestions for abx and combinations, with dosages, that have worked for you. I don't have an LLMD although am trying to find one! In the meantime I want to be as informed as I possibly can when seeing my existing docs.  Thanks!    

[JackieCalifornia]

Welcome!  Sorry you need to be here, but it's good company.  :)

I just did a quick search online for --- lyme disease england --- and there were many interesting links.  (To avoid all the links that come up referring to Lyme Regis, be sure to include 'disease' in your search terms.)  Among the links, you will find patient-oriented websites, organizations and information to help you find a Lyme expert nearby.  Even if you have to travel a bit to an LLMD, it is worthwhile:  once established with a diagnosis and treatment plan, my own LLMD saw his patients only about once a month during treatment, and some of them flew in from far away for the appointments!  The LLMD or another sympathetic and understanding MD should of course be accessible for any problems that arise, but generally speaking the treatment goes smoothly once proper diagnosis is made.  

Different locations have different strains of 'Lyme', and your MD will need to know where you have lived and traveled so that you can be tested for the likely/possible infections, based on both travel locations (including central Europe) and on symptoms.

You seem already aware of the split in the medical community (worldwide, it seems) about how serious Lyme disease is or is not and how to diagnose and treat it.

Doxycycline is the first treatment approach by many MDs, and it can be (so I read) effective against Lyme IF taken very soon after initial infection.  Many MDs then pronounce the patient cured, without considering what other, separate infection the ticks may have carried.  It is not uncommon to have one or more of these 'co-infections' (perhaps half of us have them along with Lyme), and they require separate testing and often different medications from Lyme itself.  A wise Lyme MD will know how to take a proper history from you about your travels and symptoms, and then to test for any likely co-infections.  (For example, I had Lyme and babesiosis, which is similar to malaria.)

I would also note that finding a Lyme specialist is important for you in another way:  having been likely infected outside your home country, the LLMD needs to be aware of what other sub-categories of Lyme to test you for, along with any likely co-infections (based on your symptoms).

Doxy is the first line of defense in many cases, but is effective (so I read) only if given very soon after the initial infection with Lyme.  The problem is that many of us do not know when we were first infected (sometimes what seems like a first infection may not be, if an old bite was not seen or recognized as Lyme), and doxy is also not effective against a number of co-infections.  Thus the reaction you had to the doxy prescription (first feeling better, then worse again) may have suppressed the Lyme for a while but not wiped it out, since Lyme has a very slow reproductive cycle compared to most bacteria, and thus needs longer treatment, to kill the bacteria when their cell wall is disrupted during reproduction.  A short course of doxy is the old standby against Lyme, but there are so many other factors that intrude that doxy may not be soon enough or long enough against Lyme, or appropriate to any co-infections.  Thus if it works, it's good; if you are still having symptoms (as you are), however, then it's time to do what you are doing:  revisit the situation for additional testing and treatment by a knowledgeable MD.
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Doxy works against Lyme only before the Lyme bacteria have sequestered themselves in your body, in slimy shields called 'bio-films' where the immune system cannot locate the Lyme bacteria.  This is an aspect lost on many MDs, but LLMDs are quite aware of it.  

Also, the co-infections mentioned above often do not respond to doxy at all, which is why careful exam, testing, and diagnosis are necessary, to know what other antibiotics should be given.  Treatment is sometimes serial:  for example, I was treated first for babesiosis for several months, then was treated for Lyme, using different meds for additional months.  Killing them all at once could be too much for the body to comfortably endure, and/or the meds might clash; I'm not sure what the reasoning was for my situation.  I never felt worse on meds than before treatment, and gradually got better and better.  When treatment was done, I was tired and took more time (upwards of a year) to rebuild my stamina, but it all was going in the right direction.  That is now ~7 years ago, and I have never felt better than I do now (knock wood).
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The most important thing is finding an MD knowledgeable in Lyme and its co-infections, and if you can find an ILADS member, that would be a good place to start.  If s/he doesn't work out, then switch to another.  Being an ILADS member is not critical or an absolute indicator, but it is where I would start.  For one thing, an ILADS member MD might be wise in knowing what other strains of Lyme etc. to test you for, given you were likely infected in central Europe (tho it's always possible you had been infected previously in the UK or elsewhere, but your immune system held off the symptoms until an additional bite overwhelmed your body.  Just thinking of all the possibilities.)

You say, "I got put on doxy for 3 weeks `just in case'. After a few days some of my symptoms recurred in a more severe form ... So two possibilities: 1) It could be the abx are working and it's a herx, but I need to continue taking them for much longer than 3 weeks (as the symptoms haven't cleared). Or 2) the abx are not working and the infection is getting worse, and I need to go on a different ab  (or combination!)."  These are all excellent questions -- and I would see an experienced LLMD for answers.  There are so many subtle variables -- both those you have noted and possible others that could be located only by appropriate testing -- that an LLMD is needed.

You have asked for our "opinions.., and especially explicit suggestions for abx and combinations, with dosages, that have worked for you."  Each of us has been treated in different ways based on our symptoms and tests, and there are so many possible combinations of co-infections that we could not possible tell you what to take.  I wish we could, but there is no possible way for us to do so with any accuracy.  Seeing an experienced and knowledgeable LLMD is the way to go .... and note that there are many approaches, none of them yet being the last word, because Lyme and its co-infections are emerging diseases which the MDs are still learning about.

Reading Burrascano's treatment guidelines on the ILADS website is a good start, but Lyme and its various co-infections are so complex that do-it-yourself-ing just doesn't work.  If you do not have an LLMD lined up already, email to --- contact   [at]   ILADS   [dot]   org --- and tell them where you are located in the UK (esp. which city you are near and how far you can travel) and they can send you names of ILADS members near you.

Best wishes, and let us know how you do --

[mojogal]

Hi Jackie,
FYI, I know many people, including myself, who were treated with Doxy many years after being bitten. It did not cure me but definetley had an effect as it made me Herx big time.

[JackieCalifornia]

Interesting!  What I've read is that doxy can't penetrate the biofilms, so they can't kill all the Lyme bacteria .... so maybe what's happening is that there is die-off of the bacteria that are not fully shielded by the biofilm or are out roaming around in the body, where they get slammed by the abx.  Does that sound right?  I was never on doxy, so don't have experience to go by.

[middleeuropean]

Hi Jackie, thanks for the great advice!

I've contacted ILADS and they gave me three names, two of which I hadn't already found. One of the new ones is `fairly' near - so I will try and see if there I can get an earlier appointment  than I already have in the other place.  In the meantime I've managed to extend my time on doxy. I feel lucky the second test came back pos in one strand and the ID docs agreed to prescribe. I think it's definitely having some effect, as mojogirl reported too. Just it may not be the complete answer, especially at this stage. I expect though that even any `LLMD's' here will be much less experienced than where you are. You seem to have had a great one! That's kind of why I was thinking about finding out about some concrete treatment (incl abx) options that have worked for others, so I can discuss with the doc and also get an idea of how experienced they really are. (Such as, if they say: never heard of that working, never used it on any of my patients - all of whom are coping well because I teach them pain management techniques - then I will know to steer well clear!)

I also completely agree that self-treatment is terribly risky, not a good idea! So I can see that it's best not to post any abx treatment regimen online.

By the way, I've never heard of co-infection testing here. I think in Europe the ticks carry fewer co-infections, although there may be some. I will definitely ask any LLMD I see. I will also study Burrascano.

It's really great to hear that you got cured of Babesia and Lyme! Was your treatment for the borellia by any chance along the lines of those recommended by Burrascano?  

Thanks again for your thorough reply!!! And thanks to Mojogirl too, hope you're doing really well!

[mojogal]

Doxy did make me Herx then we added in pulsing Flagyl  as a cyst Buster. Since I took it 20 years  after getting bit, it still does have an effect and adding the cyst Buster just makes it better.

[JackieCalifornia]

You ask above:  "Was your treatment for the borellia by any chance along the lines of those recommended by Burrascano?"

I was treated first for babesiosis and then for Lyme.  Below is a list of my meds, which may *not* be considered the best approaches currently, and also I sometimes react strangely to meds that other people tolerate well, so there was some switching meds around during my treatment that might not have otherwise occurred.  

My treatment finished more than 5 years ago, and much changes in the medical world over that length of time, particularly in a fast-developing area of medicine like Lyme.  All that said, here is a list of my treatment, which totalled just over a year:

for 4 months:  Zithromax (generic: azithromycin)  
                         and    
                     Mepron (generic: atovaquone)
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for 5 months:  Biaxin (generic: clarithromycin)
                         and
                     Omnicef (generic: cefidnir)
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for 4 months:  Zithromax (generic: azithromycin)
                          and
                     Flagyl (generic: metronidazole)
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This was several years ago, and Lyme treatment approaches are still developing, so don't take this as the 'correct' treatment.  There are many variables, and no one specific way to treat.  

==>>  Most especially:  do NOT try to diagnose yourself or medicate yourself without the involvement of a trained and experienced Lyme specialist.  

Lyme is *not* a do-it-yourself project.  That way lies big trouble.

[middleeuropean]

Thank you so much, Jackie! I'm not sure at all whether there will be someone in the UK knowledgeable and experienced enough, but this will help me decide. I may need to look at docs abroad, most likely Germany. I also saw Sam Donta in MA recommends long term tetracyclines rather than doxy, which is what I'm still on. I gather your doc was in CA, very far away...

[JackieCalifornia]

Yes, my doc is in California.  

Don't assume that there are not good LLMDs in the UK.  In the US, there is, in a number of our 50 states, significant pressure from state governmental agencies and medical boards that oversee MDs practicing in all areas, including the Lyme field.  These agencies and boards are infested with MDs who cling to old-think about Lyme and can (and do) put pressure on MDs not to treat Lyme and its coinfections aggressively as an LLMD would.  

Lucky for me, California has 'freedom of conscience' laws allowing MDs to practice according to the docs' own research and beliefs about how to diagnose and treat patients.  In other states, docs who want to treat Lyme and other tickborne infections aggressively are sometimes under serious pressure not to do so, with the risk of losing their licenses to practice medicine.  Whether UK MDs are under that same sort of 'top-down' pressure, I do not know, but once the government takes over medical care (as so-called 'Obamacare' is moving toward here), then the bureaucrats are in charge, no matter what the MDs believe.  

State-run medical care like the National Health are where Obama is taking us, and having had family and friends suffering in the UK under its National Health, I know it is the wrong way to go.  However, there are perhaps MDs near you who are more open-minded and could and would guide your diagnosis and treatment according to current and future understanding of Lyme and its co-infections.  

I just searched online for   --- lyme disease england ---  and up popped statements like this:  "Note: most ticks in the UK are not infected by the bacterium that causes Lyme disease. Therefore, most tick bites will not cause Lyme disease. After a human has been bitten by a tick, it usually takes 24-48 hours for the bacteria in the tick to pass into the human."  Wishful thinking.  Many of us never see the tick or know when it attached.  Medical diagnosis by fiat is not a good route.

There are however MDs who are broadminded and know that Mother Nature is forever coming up with new miseries for us (such as AIDS, which didn't exist a couple of decades ago).  Finding one of those wise docs makes all the difference.  Even in 'freedom to practice' jurisdictions here, where MDs are allowed to decide how they will practice, there is some pressure to follow the IDSA guidelines holding that Lyme is rare, hard to get, and easy to cure with a couple weeks of doxy.

So you're not alone.  Keep looking for an open-minded doc -- you might have to skulk around looking for an LLMD near you, but it's worth doing.  They may keep a very low profile for their own protection, but word of mouth among members of Lyme organizations may help you find a good doc.  Go for it!!  It's definitely worth doing.  Let us know how we can help.  

[Afterthought:  you might search this site looking for 'england' or 'uk' and see if you find commentary by someone who mentions some helpful information.  You can also send a private message ('PM') through this website:  click on the poster's screen name, and a small menu will come up where you have the option to send a private message to them that will not be posted in public here.]

Above all, don't give up!  Someday Lyme will be better understood and the war in the medical world will end, but for now, thank heaven for websites like this one!  Keep us posted.

And PS if I didn't say this already:  you can email to  --- contact  [at]   ILADS   [dot]   org  --- and ask for ILADS member-MD names in the UK.  Even if the names you get back are too far for you to travel, those MDs' offices may be able to refer you to someone closer.  Very cloak and dagger ... or white coat and scalpel, as the case may be.  ;)