Update!

[soanxious89]

Hey guys,
Well I couldn't find an LLMD in my area, but I found an infectious disease doctor in Sterling Va, and I called and talked to his office and they said he treated Lyme with long term doses of antibiotics, and sometimes even IV antibiotics if need be. So I drove 3.5 hours to see him. I brought all of my blood work and everything and he just looked at it, saw I had one positive ELISA at one time and said that I should not feel this way at 22 years old. He said that doctors should not rely so much on such unreliable tests. He didn't even take anymore blood, and just by looking at my old blood work and by my symptoms he thinks I should be treated for Lyme. So he gave me 2 months of Cefuroxime Axetil (generic of something) 500 mg. And I'm supposed to take two a day for 2 months. I'm supposed to go back in two months after this course of antibiotics and if I'm not feeling better he said he might have to put me on IV antibiotics. Has anyone ever heard of this antibiotic? And by his treatment method does this sound like an LLMD to you guys? I didn't ask him directly if he was an LLMD but his treatment method is way different than any other doctor I've ever been to. Do you guys think that I've found a means to an end for this hell I've been going through? I hope so! Please pray for me guys. Your feedback would be greatly appreciated, thank you!  

--Soanxious89

[nutrinut_bob]

And I might add, again from experience, that there can be some paranoia in addition to anxiety.  I don't think this is a good place, and certainly not a good time, to be shying someone away from possible treatment, especially when it isn't just her we're talking about, there's the spouse too.  Dr. Nicolson's book is old news, Texas is old news.  How can they be hiding anything anymore?  For a diligent researcher, there's so much information now available on the web about mycoplasmas.  Want to know how long they can live fed optimally? 84days.  I'm sorry, I think you're a good researcher, I don't doubt that you might have some interesting information.  But, there's a time and a place, this is neither.

[nutrinut_bob]

I hope you didn't tell her not to go there, anymore than what you did above.  Who cares what they tell her she's got, as long as she gets some treatment that works. I mean to tell you, an encephalopathy is nothing to play with!  I'm as tough as tough comes, and I barely lived through it.  She needs prompt attention and you can't tell me that if she goes into an Army hospital she isn't going to get it.  The people who work there have to know what they're dealing with, the general public might be in the dark, but you can bet whatever you want to that the people who deal with it daily are not!

[ewford]

VERY astute post Jackie.  Just to let you know, I agree with 99.9% of what you say here from my own research mirrors yours.  I am just angry of the cover-ups going on and what is happening to the Gulf War soldiers.  I did not mean to be sound obtuse, but I have a relative with gov't TS clearance and while they never divulged a secret to me, was told to look for things that have been buried.  kinda like getting a treasure map from the maker, so to speak.

In regards to going to Walter Reed, Don't even go, in my opinion.  You are gonna be told its ALS, or Lupus, MS, etc.  This cover-up goes to the top.  But Bob is correct, Dr Nicolson state family members will eventually become infected, even pets.  This can be passed sexually, as well as from aspirations (cough-sputum)  Remember, its a bacteria that acts like a virus.

[nutrinut_bob]

Noted that your husband is in the military, you should be getting free care, cause in all likelyhood what you have is Gulf War Syndrome.  It's not unusual for spouses to be infected.  I suggest you contact Walter Reed Army hospital, or the nearest large base hospital, doesn't matter what branch of service he's in.  We take care of those who serve, and their loved ones.  The military should know the most about treating mycoplasmas, they made some of them.  I posted this elsewhere, but I don't want it to be missed by you, and I know your mind is racing, been there.  In helping you, they'll learn more about the problem, and they can see it to that your husband is treated too, so that he doesn't bring it back home with him.

[JackieCalifornia]

Carrie,

Well said -- thank you.  That's an important perspective to have.

J.

[carrie235]

Hi Anxious:

I'm glad to hear you ordered a kit from Igenex.  But JackieCA is right...find an LLMD...and here's why and I'm sorry I didn't mention in my previous email.  My symptoms started almost a year ago.  I went to my regular family doctor at the time with my Igenex kit...she threw it out and ordered a regular lyme from a regular lab.  Came back negative.  then, off to UCSF I go..anyway, long story short, no MS but I do have 20 lesions on my brain which are not typical of MS but doc says "have you had lyme"....so there you go.  (I said no because at the time, my Lyme test from my reg doc said "no")

THEN, in November, I started wondering about Lyme again and ordered another kit from Igenex, found a different family doctor and got tested.  The tests go back to my doctor who then says she thinks they are negative but says she isn't sure how to read them but would call the lab.  I never got a call back from her.  I go and pick up my paperwork and they looked negative to me.  THEN, about four weeks ago, I pulled out my test, started looking at again and realized, OMG...it's positive!!!  I made an appt with an LLMD immediately.  Keep in-mind that these docs are REALLY booked up so make an appt asap.  It just so happened that my doc had a cancellation and I could make it that day, so it all worked out.

I shudder to think what my future would be like if I hadn't relooked at my test and relied on my family doctor who told me it was negative.  I have spent a year of my life worrying and crying EVERY DAY that I had MS.  I'm not happy to have Lyme, but I'm relieved to know that I know what is going on with my body and that I'm in treatment for it.  My life is sooooo much better now that I know.  I'm soooo sorry for all the people that are being mislead and don't know where to turn.

The internet has been awful to me (I have conjured up so many bad things from it) however, if it weren't for the internet, I would not have known about Igenex or found I I hade Lyme and my health would have continued to decline.

Bottom line...find an LLMD asap.

Sorry for rambling and sorry for any typos....my mind goes way faster than my fingers!

Good Luck and keep us updated!

[JackieCalifornia]

I know you're trying hard to figure all this out, but you really need to find an MD who can guide you through this.  Diagnosing and treating Lyme disease is not a do-it-yourself project, as much as I would like it to be.

Mainstream (nonLLMD) docs do not believe the Igenex tests are valid.  Mainstream docs rely on the Western blot and ELISA tests because that is was mainstream organizations like the Infectious Disease Society of America (IDSA) say is the appropriate thing to do.  If you get the Igenex test run, you still won't have an MD who will understand how to read the test results.

It's like having a hybrid gas/electric car and taking it to a regular mechanic because something's not right.  The mechanic doesn't know about hybrid cars, and if he believes that hybrid cars are just wrong to exist, you won't get anything useful out of him.  You might as well have stayed with your old gasoline car.

The problem with Lyme is that we need a doc who understands the equivalent of a hybrid car, and that takes an open mind and additional reading and studying to comprehend what the Lyme docs understand.

Worse is that regular docs have been told by the IDSA that Lyme docs are not just wrong, they are stupid and maybe committing malpractice, which the regular docs don't want any part of, for good reasons.

To sum up:  a regular doc won't be able to read and understand the Igenex test results UNLESS s/he has a very open mind and is willing to learn.  I am sure there are some docs out there who would be that open-minded, but most of them honestly believe that LLMDs are wrong about the testing, diagnosis, and treatment of Lyme, not to mention other diseases that often come with Lyme (co-infections) that regular docs often don't even test for.

You may have Lyme and/or one or more co-infections, but a doc who is not trained to look for these things or to test and diagnose the way an LLMD does is not likely to 'get it.'  

Have you searched/googled for "LLMD Miami"?  I just did and got 10 pages of hits.  Some of them are irrelevant, but many are links to discussion boards like this one.  

Here is one that has some conversation about LLMDs in the Miami area:  www [dot] roadback [dot] org / forum / viewtopic [dot] php?f=1&t=3532

Best wishes --

[soanxious89]

I just ordered a IGeneX "test kit" over the phone. The lady did not give me any information about what to do but read the kit, and all the information is in there. Could you please explain this test kit to me? And what I should do once I get the test kit? PLEASE HELP ME! I'm trying so hard to get to the bottom of this nightmare.

[carrie235]

Hi,

It doesn't way where you got your testing done but if you really want an anwser on whether you have lyme, I would contact an LLMD.  Also, you could call Igenex directly, order their testing kit and they will overnight it to you.  Then, you will have to get a doctor to sign the slip (can be your family doctor if you are not comfortable asking the IF doctor) and then take the stuff to a lab and have your blood drawn.

Igenex tests for Lyme differently than other labs.  If will cost you some money out of your pocket, but definitely worth the cost when your talking about your health.  You seem very desperate (and I don't blame you!), so personally, this is the route I would take.  Igenex has a website too.  Just google it.

[JackieCalifornia]

Band 41 means the test detected bits and pieces of spiral-shaped bacteria which may or may not be Lyme bacteria.  However the Western blot and ELISA tests are notoriously inaccurate.

Ceftin is, so I read, sometimes used as an alternative to doxycycline in treatment of early Lyme.  If that is ineffective, some MDs go with IV antibiotics.  That treatment approach sounds to me not necessarily what an LLMD might do, but that doesn't mean it's wrong.

No one on a website can tell you if you do or do not have Lyme disease.  The best thing to do is find an MD who specializes in Lyme, if you are unsure of your current MD.    

[soanxious89]

PLEASE ANSWER MY QUESTIONS HONESTLY I REALLY NEED HELP!!!

[soanxious89]

Hi guys,
So what you are saying is that taking ceftin 500mg twice a day (1,000mg daily) for 2 months will not cure me of Lyme disease if I have it. The doctor I saw was an infectious disease doctor, not necessarily an LLMD, or at least he did not admit to being one. But he told me if I do not feel better after this 2 months of antibiotics that he might put me on IV antibiotics. The problem is I do not know if I have Lyme Disease or not. I've has one positive ELISA which was followed by a Western Blot that bands 41 only came up positive in Igm and Igg. So my doctor told me my test was negative. Ever since I have had about 4 Lyme tests and with only bands 41 in igm and igg positive. So every Lyme test that I've had was considered negative. I still have bad popping and cracking of my joints, servere fatigue, and horrible depersonalization. All of my doctors say I don't have Lyme disease and that I have servere anxiety and depression. PLEASE HELP ME GUYS! WHAT DOES BAND 41 MEAN? SHOULD I BELIEVE MY DOCTORS THAT I DON'T HAVE LYME DISEASE AND ONLY HAVE ANXIETY? HOW DO I KNOW FOR SURE IF I DO OR DON'T HAVE LYME DISEASE??? my infectious disease doctor did not give me another blood test, He just said I shouldn't feel this way at age 22 and then he gave me the antibiotics. He didn't say whether or not I have it for sure. PLEASE HELP ME GUYS! I CAN'T TAKE IT ANYMORE! DO I HAVE LYME OR NOT?!?!? PLEASE HELP ME! IM AT THE END OF MY ROPE :(

[ewford]

The ILADS society is the cutting edge.  Not the fly by night websites Jackie.

[JackieCalifornia]

It's true that different docs, including different LLMDs, have different approaches to dosing and selection and combination of meds.  Every patient is a different ecosystem of their very own, and one-size-fits-all medicine fits no one.

Some docs use steady dosing of the same amount every day; some use a 'pulsing' approach, taking meds for X number of days, then not taking the meds for Y number of days, then start the cycle over again.  Docs who don't use pulsing may rely on the use of some antibiotics which can penetrate the 'biofilm' that some bacteria like Lyme may create to evade detection by the immune system and access by the meds.  Flagyl (metronidazole) is one of those meds, and that is the approach my LLMD took:  abx every day, but also Flagyl every day.

It's my understanding that docs generally are opposed to 'pulsing' because it can have the same effect that not finishing a prescription of antibiotics can have:  it weakens, but does not kill, the bacteria -- which is why labels on antibiotics say "Finish all these meds as prescribed by your doctor".  Otherwise, there is a not inconsiderable risk of weakened bacteria living on and reproducing, this is time with the added problem that those surviving bacteria may have a small mutation that enabled them to resist the antibiotics in the first place.  The result can be antibiotic-resistant infections, which are on the rise.  

I personally have known people who would get sick, go to the doc, get 10 days of antibiotics, take 3 or 4 days' worth, and then stop -- because they didn't "want to get dependent on antibiotics" or something.  Granted that docs and pharmacists do not do a good job of explaining why taking the whole course of antibiotics is important, but people who don't complete the whole course of meds run the risk of creating antibiotic-resistant bacteria that then threaten ALL of us.  That is happening today, and the 'superbugs' that result are very very dangerous.

Docs who prescribe pulsing do so on a schedule that is apparently designed not to allow mutant bugs to proliferate.

My most significant caution is not to take medical advice from websites such as these.  If you do not trust your MD or your confidence in him/her has declined, by all means find another doc, and use websites such as these for ideas and understanding, but not for medical advice.  

[ewford]

Also check out this on the 2010 ILADS conference.  (International Lymes and Associated Diesease Society)

http://www.betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways

[ewford]

If you research the current problems associated with Lyme treatment, YOU CANNOT MEGADOSE THIS!  The bacteria when attacked by ABX like this "flip themselves" inside out and protect themselves with a biofilm.   All you are doing is causing them to go into a CYSTIC state, which the ABX will NOT penetrate.  Do some research before megadosing, Check out Dr Lida Mattman's (Nobel prize nominee) Yale PHD Immunology, Virology  video on youtube talking about the three forms of shape the Lymes bacteria can take (pleomorphic).  Youtube search her and watch a video of her explaining this.  It is worth it!!

[JackieCalifornia]

From what I understand, different docs (even those who are LLMD-type docs) have different approaches -- some pulse the meds on and off as you describe, while others prescribe continuous treatment.  And different docs use different meds -- part of which depends on what coinfections someone has.  The bugs are sneaky, so the docs have to change up their tactics, I think ... that and the whole treatment approach is still being developed as more is learned about Lyme.

I agree about finding an LLMD ... tho it's hard for those new to dealing with Lyme to know whether a doc is or is not an "LLMD", since there's no clear way to know, since it's an attitude and an approach, and not a credential.

Someday all this will be sorted out -- soon, but after we are all well, I sincerely hope!

[gettnbetter]

Hi there, I am new to the forum but saw your post and can relate because I spent many  many hours, probably days, looking for the right doctor before I chose one.  I now see one of the Top Lyme Doctors in the US, people fly from all over to see him, but for me it is only a 2 hour drive, he is in D.C.  I have been under his care for 3 months now.  My impression from my protocol (and also from Dr. Burrascano's protocol which is published on the web and very helpful to read through), is that 1 antibiotic 2X per day is a very very low dosage.  I am on 4 different ABX and I take 3 of them....2Xper day for 3 weeks then off a week, ON 3 weeks then OFF a week.  I have to do this for 6+ months.  I have a a herx already and expect more.  But IV ABX are extremely expensive.  
It may be more expensive to go to a top doc, but in the long run, you'll save a ton of money by staying away from average docs. It's a crazy road to navigate, but I know people who are symptom free.  Hope this helps.  Take care!

[JackieCalifornia]

From what I read, it takes a while for the meds to take effect, and it was only a few days ago that you posted about seeing the new doc and getting a prescription and a game plan from him.  I'd suggest that you call the doc's office and tell them your concerns and see what they say.

Lyme is hard to deal with in all kinds of ways, so I certainly appreciate how much you want to be well and put this behind you.  We've all been there one way or another.  Also, I've read that anxiety is a common symptom -- I've certainly been there.

Take care, call the doc, and tell them your concerns, okay?  

[soanxious89]

I do not know what to do now. Should I take the two month course of Ceftin and then go back to the infectious disease doctor? Should I ask him to run more Lyme test to make sure that it is for sure Lyme? Or should I just continue to take the antibiotic and let him treat me based on my symptoms alone? I just do not know what to do. I've been on 500mg Ceftin twice a day for a week now and I do not feel any different. Please someone help me. Tell me what I should do next. I feel so lost.

[soanxious89]

Thank you. It's called Ceftin. That's the brand name for it.

[JackieCalifornia]

Good for you for taking charge!

There's no specific definition for an LLMD, no test they have to take, no particular guidelines they have to follow.  This is the wild side of Lyme treatment.

I have not had IV antibiotics, only oral, so I can't say.  I also have not taken the medication you mention, so can't comment there either.  The only thing I can think of that you can do is read up on Lyme treatment, for example at ILADS [dot] org, under the tab "About Lyme", in Burrascano's Diagnostic Hints and Treatment Guidelines.  My own LLMD did not follow Burrascano's approach precisely, but did follow one that seemed reasonable to me.

Did the doc say anything about possible co-infections, which are other diseases that sometimes are carried by the Lyme ticks?  

The doc sounds like he is broadminded, but whether he is the right one for you or has assessed your situation accurately, I really can't say.  If you have any concerns, you should perhaps see another doc, tho I know how hard that is to do.  I'm sorry not to be of more help.

I searched the name of the drug online, and at drugs [dot] com is the following section regarding use of cefuroxime axetil in Lyme disease -- the last section seems particularly applicable, perhaps:

==========================================================
"Lyme Disease

"Treatment of early Lyme disease manifested as erythema migrans.50 58 62 79 143 145 147 181 182 183 208 209 210 215 IDSA, AAP, and other clinicians recommend oral doxycycline, oral amoxicillin, or oral cefuroxime axetil as first-line therapy for treatment of early localized or early disseminated Lyme disease associated with erythema migrans, in the absence of specific neurologic involvement or advanced atrioventricular (AV) heart block.58 143 182 208 209 210

"Treatment of early neurologic Lyme disease† in patients with cranial nerve palsy alone without evidence of meningitis (i.e., those with normal CSF examinations or those for whom CSF examination is deemed unnecessary because there are no clinical signs of meningitis).143 208 209 Parenteral anti-infectives (IV ceftriaxone, IV penicillin G sodium, or IV cefotaxime) recommended for treatment of early Lyme disease when there are acute neurologic manifestations such as meningitis or radiculopathy.143 182 208 209

"Treatment of Lyme carditis†.208 IDSA and others state that patients with AV heart block and/or myopericarditis associated with early Lyme disease may be treated with an oral regimen (doxycycline, amoxicillin, or cefuroxime axetil) or a parenteral regimen (IV ceftriaxone or, alternatively, IV cefotaxime or IV penicillin G sodium).143 182 208 209 A parenteral regimen usually recommended for initial treatment of hospitalized patients; an oral regimen can be used to complete therapy and for the treatment of outpatients.143 182 208 209

"Treatment of borrelial lymphocytoma†.208 Although experience is limited, IDSA states that available data indicate that borrelial lymphocytoma may be treated with an oral regimen (doxycycline, amoxicillin, or cefuroxime axetil).208

"Treatment of uncomplicated Lyme arthritis† without clinical evidence of neurologic disease.143 208 209 An oral regimen (doxycycline, amoxicillin, or cefuroxime axetil) can be used,143 208 209 but a parenteral regimen (IV ceftriaxone or, alternatively, IV cefotaxime or IV penicillin G sodium) should be used in those with Lyme arthritis and concomitant neurologic disease.143 208 Patients with persistent or recurrent joint swelling after a recommended oral regimen should receive retreatment with the oral regimen or a switch to a parenteral regimen.182 208 209 Some clinicians prefer retreatment with an oral regimen for those whose arthritis substantively improved but did not completely resolve; these clinicians reserve parenteral regimens for those patients whose arthritis failed to improve or worsened.208 Allow several months for joint inflammation to resolve after initial treatment before an additional course of anti-infectives is given.208"
===================================================

If you have any doubts at all, please call the doc and ask your questions, or send him a letter with your questions and ask him to call you with answers.  You are the best guardian of your own health and welfare, and your doc is the next most important person in that regard ... Websites are just websites, and nobody here that I know of (and surely not ME) is medically trained.

I wish you the best, and again congratulate you for taking action to get yourself to a Lyme doc -- wish I could say more, but I'm not a doc.

Let us know what you do and how you do, okay?