Aa
A
A
Close
Avatar universal
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
Cancel
27 Answers
Page 1 of 1
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
Jackie, thanks for noticing. I have my good and bad days.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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]
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
[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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Thank you very much. I understand the protocols re public postings. I appreciate all the advice and the research shared. Will stay in touch.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
There is also LymeDisease.org, which used to be called the more descriptive CALDA (California Lyme Disease Association).  Already sent this via private message.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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 :)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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 --
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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).
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
First, I had EXACTLY what you had in July 2012.  I got treatment for LYME at 200mg and it worked over time.  The person writing you that 200 mg doesn't work isn't a doctor.  I went to Daniel Cameron who works with Evi Saphi and is president of ILLADS (lyme association).  Please follow the protocol of 200mg.  You will feel worse then so much better.  Feeling worse means you are herxing. Stay off all sugar, coffee, flour and pasta.  It helped me recover.  Others that didn't fed the lyme instead of killing it.  check for yeast , parasites and ANY COINFECTIONS.  May sure a lyme literate doctor runs coinfection tests.  Your doctor who is treating you is on the right track.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Lyme disease and its companion infections are still being figured out by the medical profession.  There is much theory in many directions, but still much to be learned.  What works for one person may not work for another, so having a wise and nimble MD is most important imo -- the details will work themselves out.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
My daughter got diagnosed with Lymes. The doctor put her on 100mg of doxycycline twice a day. She has to take Zantac with each dose because of terrible GI side effects. He has her on this for thirty days. Do you think this is enough. The earliest she could of got bitten was in May of this year. I was thinking of asking the doctor to switch to Doryx because it's easier on the stomach but I don't know if it's good for lyme's. I live near Chicago and if anyone on here knows of a LLMD please respond. We need help I'm a wreck.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
My daughter got diagnosed with Lymes. The doctor put her on 100mg of doxycycline twice a day. She has to take Zantac with each dose because of terrible GI side effects. He has her on this for thirty days. Do you think this is enough. The earliest she could of got bitten was in May of this year. I was thinking of asking the doctor to switch to Doryx because it's easier on the stomach but I don't know if it's good for lyme's. I live near Chicago and if anyone on here knows of a LLMD please respond. We need help I'm a wreck.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Sorry to hear about your daughter's ailment, and good for you for plowing ahead to be the right things are done.

There is no absolute way to know whether a particular MD is following the most up-to-date approaches to testing and treatment Lyme and any co-infections the 'Lyme' ticks may have, so it is good that you are continuing to 'work the problem', as an engineering once explained to me:  keep asking questions and thinking over all that has gone on and is going on, and modify your approach as more data comes in.

Doxycycline is said to be effective, but only almost immediately after the infection ... and so many of us never know when we were infected.  This knee-jerk response by too many MDs is a problem.  That your daughter is also having GI problems is something one would hope the MD would take into account and not just let it go on.  There are other (and in some significant ways) better antibiotics against Lyme that might be easier on your daughter's system.

You are right that only some antibiotics are not effective in Lyme, so the trick is finding one that understands Lyme, Lyme meds, and your daughter's sensitivity to particular meds.

Whether in May was the first bite you daughter had is ultimately unknown:  many of us (including me and a family member) never saw a tick, never had a rash, just started feeling lousy ... and after seeing 30 MDs, we were finally diagnosed with Lyme and a common co-infection, babesiosis.  So one never knows exactly when the Lyme arrived, which changes the medication that is needed:  unless treated very very soon after the initial bite, other meds besides doxy are absolutely necessary, but docs who practice 'old think' about Lyme disregard that.

In your situation, I would find a Lyme specialist for a second opinion.  You don't need to tell the current doc (in fact, I wouldn't, to avoid problems with the doc if you need him later), but I would find a doc through ILADS, the International Lyme and Associated Diseases Society.  They have a website that can give you names of Lyme specialists near you.

Just now, I search on google for -- chicago lyme -- and got a terrific list of possibilities, including local patient groups and others.  Sort through at least the first dozen hits on the -- chicago lyme -- search, and I think you'll find some very good leads.

Not all docs who understand Lyme are ILADS members, and it is not required that they be.  It is a voluntary group, and there is  no test to know if they meet ILADS approaches ... because Lyme is still being figured out.  A bit of snooping around some of the Chicago-area Lyme sites will begin to give you some ideas of who you might want to see.

Note however that Lyme docs *often* keep a low profile about their ILADS-like approaches to diagnosis and treatment, because state and local medical boards who think 'Lyme = sniffles' often try to shut the more enlightened docs down.  So be discrete.  

... but most importantly, keep on what you're doing, which is to plow ahead and find a doc situation that makes more sense to you.  Go for it!  and let us know how we can help and how it goes.  Take care ... !
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I'm so very overwhelmed. I can't stop crying. My daughter doesn't know how upset I am. My daughter is 23 and wants me to be happy with just taking the doxycline. Is it safe to put my e Mail on here so you could e mail me with the doctors you found. I only found one from ILADS. What antibiotics are better? I want to goggle them. I'm going to try to get in to the one doctor they sent me. Thank- you from the bottom of my heart for the help.❤️
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I hear you.  Lyme disease messes with the whole hormonal/endocrine system, which affects mood and emotions, so it's not uncommon to feel all twisted up ... anxiety, confusion, fog-brain, and so on.  It affects everyone a bit differently, so don't try to match up symptoms exactly with anyone, and also know that we've all been through some version of what you are going through now, assuming you have Lyme.  All this is knowable and treatable, with a knowledgeable doc.  So hang in there!

Doxycycline is useful against Lyme, but only if taken almost immediately after getting infected -- and doxy is *not* effective against a number of the other infections the 'Lyme' ticks also bring at least half the time.  That's why a knowledgeable Lyme doc is so important.

Did you go to the ILADS website for a referral?  If you need more than one name, go back and tell them that Dr [Whoever] didn't work out and  please send another name.  

You can also start a *new* thread here (so it's visible and not buried at the end of a long chain of messages) titled something like "Need LLMD near [Dallas TX]" or whatever area you are in.  Then someone here might have a doc's name to share with you, and they will do so not on the open page here, but through a 'private message' ('PM') on this site, since we try to protect Lyme docs by NOT putting their names out in public.  

I know, it sounds quite complicated when you're not feeling well, but it's not too hard.  If you can't figure out PM, just post back here and someone will send you an explanation.  More about that if needed.

Part of having Lyme is 'brain fog' and being confused and anxious.  It's not you doing that to yourself -- it's a direct effect of the infection.  It will go away once you are diagnosed and treated for the right ailments, so in the meantime be kind to yourself and know that anxiety is part of the deal with Lyme.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I am trying to find a LLMD near Bard College NY. Can anyone help? I have one or two names but they charge between $900 and $1250 just for the initial consultation :-(
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Welcome to MedHelp Lyme --

The end of summer is when many people realize they may have Lyme and need a knowledgeable MD, so the prices do go up sometimes.  

Someone here may be able to post with specific names of Lyme docs (the names should be sent to you through the 'private message' function of this site, so the MD's names are not mentioned in public, to avoid hassle by local and state medical boards who don't 'believe' in Lyme).

Another approach is to email to the International Lyme and Associated Diseases Society (ILADS for short), which is the main voluntary organization for Lyme specialists.  The following email address will take you to that referral function (take out all the spaces in the URL):

http:  //  ilads.org/  ilads_media  /  physician-referral  /

If that doesn't work for some reason, just go to the ILADS website and in a few clicks you can likely find the referral page.
-------------------------
As to pricing, those number sound rather steep, and not all docs want an arm and a leg to see you.  If you find that every Lyme doc you can travel to IS wanting that much, consider checking online with LymeTAP and/or LymeLight Foundation, which I understand may help on financial matters for those without other resources.

Borrowing on credit or from family and friends is also necessary sometimes -- whatever it takes to get well.

If you are a student or on staff at Bard, you may be able to get some reimbursement from policies they offer.  

And there is Uncle Credit Card, always a friend when truly in need.

If none of that doesn't work, post back to us here and we'll try to come with other suggestions, ok?  

Best wishes to you -- let us know how you do, okay?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Hello,
I am 44 years old with unexplained fatigue, insomnia, joint and muscle pain, leaky gut, chronic diarrhea, some tingling and numbness in the extremities.  
I have been dealing with this on and off for about 2 years now.  The Diarrhea started 3 years ago after a camplobacter infection.   Since then a whole host of issues have come my way.  
I just recently did an Igenex lyme tests that was pretty much inconclusive.  My recent test results showed I have High level of EBV above 300, deficient in many vitamins and nutrients including B12.  I am currently doing IV vitamin treatments and getting weakly B12 shots.  I am also on an anti Viral and whole hosts of vitamins probiotics and under the care of a physician...  
After all this, I am still getting no relief.  I might even think I'm getting worse.   My lyme test is not conclusive so I have not started any treatment yet.  Very afraid of long term antibiotics that can further harm my gut which as is, is not absorbing any nutrients.  I eat pretty healthy.  Stick to a organic, gluten free, juicing everyday lifestyle.  
I am at a loss and don't know what to do and which way to turn.  I've been progressively getting worse since May of this year.  Any and every advice would be greatly appreciated..
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Sorry you are having such a hard time!  I understand that you have NOT started treatment for Lyme yet, correct?  That could be a big part of your symptoms.

If you cannot get your current doc to sit down and go through the concerns you have stated here in your post (and deal with them!), then consider finding another MD for a second opinion ... and I would make sure this doc is a Lyme specialist.  If you need help finding a Lyme doc near you, let us know and we can outline for you ways to do so.  

You might also consider taking a wise friend or family member with you to the doctor appointment who can be your advocate in talking with the MD.  When I was very ill, I had trouble collecting my thoughts and expressing my concerns -- it's the illness getting in the way.  

There are ways to treat with antibiotics that take into account your ailing digestive system -- this is something your MD should know about and take care of.  

You don't say what Lyme test was used -- your Lyme doc and your regular doc should be communicating about all this so that diagnosis and treatment are coordinated.  If the docs are not in close touch, then your friend-and-advocate should make certain the information is communicated between them.  

If you have a copy of your Lyme test results, would you share them with us?  When I hear that test results are 'inconclusive', it sounds like they are NOT NEGATIVE ... and in Lyme, 'not negative' can very well mean POSITIVE.  

Let us know how things go -- take care!  Sending you all good thoughts --
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Lyme Disease Community Resources