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Doxycycline Hyclate 100 mg twice a day sufficient?
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Doxycycline Hyclate 100 mg twice a day sufficient?

Hi everyone :),

I first wanted to say thank you all for your helpful advice and tips in my last post, I read them all and chose a best answer even though I wanted to choose them all :). I wanted to start a new post cause this is a completely different topic.

I finally met with the infectious disease specialist today and he wants to start me out on some treatment for Lyme disease. He ended up prescribing me 100mg of Doxycycline oral two times a day for two months and wants to see how I'm doing in a month.

I've also had another doctor, kind of a Lyme literate doctor I guess, who I thought was really not ever going to treat me but it turns out he also wants me on 100mg of Doxycycline two times a day.

So it seems that all the doctors I've seen who believe I have Lyme disease prefer to start off with Doxycycline. All my symptoms started in late September of 2012. It amazingly took me almost half a year to get diagnosed and treated so I guess I can assume I have chronic Lyme?

So what I was wondering is Doxycycline 100mg oral twice a day a powerful enough antibiotic to treat chronic Lyme Disease? It seems kind of low to me especially after doing some research? It also seems that Doxycycline at this dose is strictly bacteriostatic (stops bacteria from reproducing but doesn't kill them)? It may be that the Lyme literate doctor is just starting me off on a more tolerable low dose and might increase or change antibiotics later on but that's still unclear.

What do you guys think? Is this the right direction?

Thank you all :D
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I don't think you quite qualify for the "chronic lyme" description yet.  That's the good news. You're towards the end of the "early disseminated" and beginning of the "late disseminated" stages.  Doxycycline is the 1st choice drug to treat it early, and it's often used in the early disseminated stage.  I think 400mg/day is fairly typical.  200mg/day would be too low.  I don't know that Doxy alone will cure you, but then I'm not a LLMD.  My untrained guess is that you'll need a secon abx.

Dr. Eva Sapi has done a lot of research on Borrelia spirochetes in the lab, and she showed that Doxy triggered many of them to curl up into cysts and become dormant, waiting for the abx to go away.  It can be so tricky, because a patient might feel well, not knowing the spirochetes are hiding. Then, a few weeks or months later, they re-emerge and symptoms return.

That's great progress that you now have 2 docs willing to treat you!  A good question for both these docs would be to ask for a ballpark of how long you'll need to take antibiotics and see what they say. If one says "3 weeks," I'd go see the other one.  I would guess that you'll need several months worth.
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I don't think you quite qualify for the "chronic lyme" description yet.  That's the good news. You're towards the end of the "early disseminated" and beginning of the "late disseminated" stages.  Doxycycline is the 1st choice drug to treat it early, and it's often used in the early disseminated stage.  I think 400mg/day is fairly typical.  200mg/day would be too low.  I don't know that Doxy alone will cure you, but then I'm not a LLMD.  My untrained guess is that you'll need a secon abx.

Dr. Eva Sapi has done a lot of research on Borrelia spirochetes in the lab, and she showed that Doxy triggered many of them to curl up into cysts and become dormant, waiting for the abx to go away.  It can be so tricky, because a patient might feel well, not knowing the spirochetes are hiding. Then, a few weeks or months later, they re-emerge and symptoms return.

That's great progress that you now have 2 docs willing to treat you!  A good question for both these docs would be to ask for a ballpark of how long you'll need to take antibiotics and see what they say. If one says "3 weeks," I'd go see the other one.  I would guess that you'll need several months worth.
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Greetings -- hope you're holding up okay.  :)

Your approach is a very thoughtful and careful one, and kudos to you for that.  It is indeed hard to figure out what is the right path, and when to change the approach if it seems to not be working.  No hard and fast answers, so re-evaluation all along the way is good -- but without making yourself crazy with second-guessing.

I don't think there is a hard and fast line when early Lyme becomes chronic Lyme, so I wouldn't worry too much about that.  I think I got a low level case of Lyme one year, and then a year or so later got re-infected (Lyme and babs) that hit me really hard, but I can't prove it.  Much can remain a mystery, and all you can do is go forward and deal with whatever it is.

By the time I was diagnosed, I was pretty sick, and my LLMD skipped over doxy entirely, treating me first for babesia and then for Lyme.  Because my Lyme infection was well established, it was too late for doxy, in my doc's view, and I was given two meds at the same time:  azithromycin to kill the bacteria and flagyl to break open the cyst-like structures the bacteria create to shield them from the immune system.

Your docs may take the view that your infection is 'new' enough to respond to doxy, but you might do some reading on it (see the ILADS website, in Burrascano's treatment guidelines, tho don't get bogged down in it.)  Then have a conversation with the doc about the treatment approach, why this and not that.

It sounds like the infectious disease doc is following the standard, nonLLMD approach of a couple of weeks of doxy.  I'd be outta there, but I'm not medically trained, so take that for what it's worth.

The second doc sounds like he's not much of an LLMD either, if he dithered around before prescribing.  

Did either of them test you for co-infections, based on your symptoms?

Your profile doesn't say where you are geographically, so I can't make any suggestions of where to start looking for an LLMD, except to email to

       contact  [at]  ILADS  [dot]   org

and tell them where you live and how far you can travel for appointments.

Before you blow off your current docs, if you do, get copies of ALL the tests they did.  Your next doc might see something useful there, and after all, you paid for the tests.

Like I said, I'm not medically trained, but I would go find another doc.  Others here may have other suggestions.  

Hang on!  Keep plowing ahead.  It's definitely worth it.
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I have to agree with everyone. I would be out of the infectious disease office pronto. Rico is right, 400 MG a day is what I am on now and what I started out with. I had Babesia which I hope is cured and I also have Bartonella which for me is worse because its all neurological problems in my case.

I think you need to be tested for co-infections also so an LLMD is the way to go.

At least you are on the right path. When I was in TX where "Lyme disease doesn't exist" I talked my mainstream doctor into giving me doxy since it helps skin conditions. The skin conditions were Bartonella lesions but even with 200 my of Doxy, I herxed so badly, showing I did have Lyme. I moved to Fl a year ago and started treatment and have improved since seeing an LLMD.

Keep us posted.
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Side note to you, mojo:  I have noticed lately how much stronger you 'sound' in your posts -- which makes me think you are improving!  Hope that's so.  Take care, kiddo.  I know you've had a long, rough road. Hang in there!  J.
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Jackie, thanks for noticing. I have my good and bad days.
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Avatar_m_tn
Hello. I am brand new. Parent seeking info re child. Need LLMD in LA for 13 year old daughter. Been to GP, Ped. Endo., Rheumatologist.  Multiple rounds of tests. Some positive some negative. Rgist says Lyme is excluded based on last five tests although first was positive. Lupus cannot be ruled out. Thyroid levels elevated all along. Synthroid worked for one month but now ineffective. Not convinced Lyme is ruled out. Or coincident infections. Symptoms onset was immediately following school overnight trip to woods near Malibu. Don't know the protocols here but you seem extremely knowledgeable and generous w your knowledge and info. Thanks for any help.
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Welcome to MedHelp -- sorry to hear your daughter is not well, but I would do what you are doing -- pursue the symptoms and unanswered questions until you are satisfied that all has been considered and taken care of.

Others here will respond as well, so do check back tomorrow for their suggestions as well.  It's a group effort, and we have a good group.

Generally speaking, the most obvious kind of docs to see are the ones who are often the most closed-minded:  endocrinologists, rheumatologists, and infectious disease docs.  GPs should also be up to speed, since they are in a good position to identify these infections, but unfortunately there is much ignorance among docs, much of it willful.

I'm in Northern California and not familiar with the docs in SoCal, so can't name names (and wouldn't do so in the open here anyway, to protect the docs) down there, but here are some ideas:

Here are some ideas on to locate a doc we would call an LLMD -- which is patient slang for 'Lyme-literate MD'.  It's not a credential or a formal title ... it's just how we patients identify a doc who understands Lyme and its coinfections and knows how to deal with them.  If you get a bad feeling about any doc you go to, then switch.  If you read through some of the posts here, you'll that happens every so often -- there are wacky docs out there who claim to be Lyme specialists, but they make no sense to me.  

The main voluntary group for LLMDs is the International Lyme and Associated Diseases Society, or ILADS.  Their website is at ILADS [dot] org.  There is no test to pass to be an ILADS member, so there's a sprinkling of really strange docs who belong to ILADS, so keep your antennae up and bail if you need to and go to another doc.  Even docs who think 'big thoughts' about Lyme get stuck sometimes on some approach that doesn't work or only works for some patients, but the docs can have huge blind spots.  Just a word to the wise.  It's not terribly uncommon to switch docs during treatment; if it's warranted, do it.  Lyme is a developing area of medicine, so the docs are just groping their way through it all too.

To find an LLMD near you (and I'm sure there are some, I just don't live in the LA area), here are two leads:

      --  email to     contact  [at]   ILADS   [dot]   org   and tell them what part of LA you are in.  They will send you some names, but if the docs are not convenient or available, ask again.  

     --  there is a California Lyme Disease Assn, which is a patient-oriented advocacy and information group.  It used to be called CALDA, and you may still see that name on old posts etc. online, but they have for reasons I don't know changed their name to the bland 'LymeDisease  [dot]  org'.  It's the same organization as far as I know, just with a new name.  They can perhaps give you some docs' names, but remember, there are a fair number of nuts and oddballs who call themselves LLMDs ... so just keep your antennae up and be ready to bail if need be.  Referral list like that are no guarantee of not-a-quack.

I don't know that we have any Southern Calif. people posting here currently, but if there are any, they may pop up with suggestions ... and speaking of that:

===>   We do NOT post names of LLMDs here in the open, because in many states, the authorities have made trouble for docs who 'over treat' in the face of the IDSA (Infectious Disease Society of America) and the CDC (Centers for Disease Control) diagnostic and treatment standards.  You'll see references here to 'Dr M' or 'Dr A', and if you need to know a full name, it's done through the private message system on this website, fyi.  If you need help finding that, let us know.  

Your daughter may well have gotten infected at the camp-out, but she also could have been bitten before that, but her immune system held off the effects of the disease(s) till a new bite overwhelmed her immune system.  We all tend to think of illness as linear and isolated, like the flu or a cold:  you get sick, you get treated as appropriate, you get well.  Lyme doesn't work that way for everyone, so keep an open mind to what may be going on in your daughter:  

Some of our MedHelp members have posted recently about 'hidden' infections that were not detected until another infection(s) is treated and gone, because that now-treated infection(s) was masking another infection(s).  Lyme is immunosuppressive, and many of the Lyme tests are geared to look for the immune system's reaction to an invader, so sometimes it takes a while (months) for a hidden infection to show itself.  Lyme is definitely a process, not a single event, and coinfections occur about half the time.  

[see part 2 below]
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[part 2]

The really good news is that young ones like your daughter are often able to heal quickly and fully with no backsliding.  My kid was one of those, and even protested about not feeling sick at all when the medication was begun.  It was only after treatment was done that The Kid confessed to now realizing how much better things were post-treatment.

Everyone is different, so just take it as comes and be reassessing periodically how treatment is working or not (and it usually lasts for months).  And if your doc isn't paying attention, then quietly scout for a new doc and make the transition as seamless as possible.

I suggest you always get full copies of all test results at each appointment.  Our LLMD just as a matter of course would hand over a full set of results at the appointment, so my records are in good shape, but some docs don't do that, and asking later for a complete set of all tests done from the beginning will get you nothing but dirty looks and ... an incomplete set that the front desk person in his/her infinite wisdom decided you didn't really need.  Lyme and its coinfections are so subtle and confusing that sometimes it's necessary to switch docs if your doc seems to have hit a dead end, and in such a case, the previous tests (ALL of them) could have important clues that the new doc can see patterns in that the old doc missed.  Call it defensive paper hoarding.  But do it.

I just found these headlines online:

-- from NBC Southern California website, one day ago:  "Lyme Disease-Carrying Ticks Found Lurking in New Areas in Santa Monica Mountains"

-- from the LA Daily News:  "Ticks with Lyme disease found in Paramount Ranch"

-- from the LA County Department of Public Health:  "Lyme Disease (LD) is caused by the bacterium Borrelia burgdorferi, and is transmitted to humans by the bite of an infected western blacklegged tick (Ixodes pacificus) in much of the western United States and by the blacklegged or deer tick Ixodes scapularis in other parts of the country. The reservoir for B. burgdorferi is small rodents, with deer as a secondary reservoir. Ticks that feed on infected rodents or deer may then transmit the disease to humans.

"The western blacklegged tick has been recovered from 56 of 58 California (CA) counties, including Los Angeles County (CA Department of Health Services, unpublished data). Several surveys have estimated that only 1.0-1.5% of adult I. pacificus ticks are infected with B. burgdorferi, compared to an infection rate of 20-40% in I. scapularis ticks in the Northeast US. Thus LD is not acquired frequently in Los Angeles County (LAC)."

You see in that last paragraph the double-think done by the medical community:  they state that the Lyme tick is found in virtually all counties in California, but that the ticks don't carry Lyme very often.  (Yeah, right.)  It's the best defense the medical gurus can come up with:  "Our ticks don't get no stinkin' Lyme."  All said in the service of the conclusion that "LD is not acquired frequently in LA County."  Sure, uh huh.

Sorry if this rambles, it's late and I've had a long day.  Let us know how we can help -- it's a good group here.  Best wishes to you and your family -- keep us posted.

and PS be cautious if a doc wants to prescribe anything in the steroid family:  it is immunosuppressive and exactly the wrong thing to do in the face of an infectious disease like Lyme.  
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and PPS   --     I don't think much of the Lyme documentary 'Under Our Skin' -- I think it would be too alarming to any with the disease.

For your own reading, you might pick up the poorly named book 'Cure Unknown' by Pamela Weintraub.  It intersperses true Lyme stories with techno-medical information and narrative.  I've decided the author meant the title to be ironic, because it's the idiots in mainstream medicine that we don't know how to cure of their 'Willful Blindness' .. but I think that title was already taken.  Ha.  
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Thank you very much. I understand the protocols re public postings. I appreciate all the advice and the research shared. Will stay in touch.  
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Sorry! On another thread, I mistook your LA for Lousiana, not Los Angeles!

Yes, there are Lyme infected ticks in Malibu, and there have been for many years. My doc used to do weekend clinics in Malibu to treat the many people in the area who have it, but there are other docs treating in SoCal now.

I encourage you to contact lymedisease.org.  They have a very thorough list they can send you.  Ask who the top 3 are.  There are some on the list that haven't done much and really don't know what they're doing. Contact local Lyme support groups to ask who's the best.  There's also one that was featured on Dr. Phil. I think she's in O.C.

Be sure to ask any doc if they're part of ILADS and have been through ILADS training.  I know that my doc recommends one or two in particular.  I'll send you a private message with his name. You can call the office and ask. I've heard them give referrals for SoCal before.
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There is also LymeDisease.org, which used to be called the more descriptive CALDA (California Lyme Disease Association).  Already sent this via private message.
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Thank you all for your help :D.

I'm going to continue taking 100mg twice a day and see how I feel by the time I have my next appointment at the end of April. Hopefully all goes well.

I'm also going to try and pursue some other things as well that could be causing my symptoms such as allergies. I have really bad allergies to almost everything so I'm considering getting allergy shots to deal with that but they're kind of scary to get :/

Anyway thanks again everyone :)
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My LLMD is an immunologist by training ... if you can find a Lyme-friendly doc in that field, it might make a good bridge between allergies and infections.  Who knows how the conditions overlap.

Best wishes!  Keep us posted --
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I have heard of some people developing new allergies and sensitivities while infected with Lyme.  In my case, I had the opposite happen.  While my drug sensitivity went up, my immune system was suppressed and my allergies literally disappeared last year. They're back now, which is a bummer, but it tells me my immune system is better.

Lyme mucks up the immune system in ways we don't fully understand, and some people respond differently than others. I encourage you to read up a bit on allergy shots and Lyme to see if there's any opinions on it.  Some LLMDs discourage vaccinations in certain Lyme patients because it's putting yet another burden on the immune system. This isn't universal, though, and there are differing opinions.  I am hoping the allergy shots are helping you. It is a nightmarish year for allergies.
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TREATMENT
As the symptoms indicate, Borrelia can affect every single system in the body. Treatment should include antibiotics to kill the bacteria and also detoxification.

Borrelia bacteria release toxins from their outer coat and as the bacteria die they also release endotoxins which can make the patient feel worse. This is called a Herxheimer reaction and it is very important that the patient understands this aspect of the treatment. The higher the bacterial kill the worse the Herxheimer reaction.

Everyone has a different way of detoxing and if you do not eliminate the toxins, tissue damage can result and recovery may be retarded.

Antibiotics are usually taken for a long time – possibly 2.5 years, especially in chronic Borreliosis. If the majority of symptoms are neurological then intravenous antibiotics are advocated (Burrascano guidelines, 2008).

Treatment with three different antibiotics is required to address the three different forms: Beta-lactam to kill the spirochete stage; tetracyclines or macrolides to kill the intracellular form and the metronidazole, tinidazole and nitrofurantoin to kill the cyst form. Three-antibiotic treatment can also give rise to multiple side effects, so the dose and the frequency needs to be adjusted to the patient’s tolerance.

Given that the patient is sick and will get Herxheimer reactions, coupled with antibiotic side effects, it is an awful state to be in and the person must be monitored by a lyme-literate medical doctor (LLMD).
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