Lyme Disease Community
Could it be Lyme?
About This Community:

This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Could it be Lyme?

Over the years I have had positive Lyme screen tests (B. burgdorferi Ab, IgG, IgM) but then the ensuing Western Blot tests to back it up were both negative. The lab indicated that this could mean I have autoimmune disease causing a false-positive Lyme, but my CRP and sed rates are always normal so I was told I could not have autoimmune disease.  After quite a while I was referred to an "infectious disease specialist" and that @$#% just sat on his keister and told me (without examining me or doing any tests) that I could not have Lyme disease because it is "not a chronic disease."  Meanwhile, I am deteriorating with neurologic symptoms that are like a textbook case of ALS - but the doctors just blow me off.  I have muscle wasting, but no joint paint.  No pain at all except when my neck muscles get so tired of holding my head up.  When I use a neck brace, the pain goes away.  I have extreme weakness, fatigue, muscle cramping, weakness in cheeks, mouth, arms, legs, neck. Walk with cane.  Falling.  Nighttime breathing issues. Choking on saliva sometimes.  Etc.

Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions??  If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today).   I'm in Utah.  Thanks for any insights.

Weakandfalling
Blank
Avatar_f_tn
Welcome to MedHelp Lyme --

I'm so sorry your docs are doing what too many of mine did too:  just blow it all off.  What's good is:  you aren't giving up finding out what's going on.  I admire that spirit.

Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers.  Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.  

There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening.  It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme.  There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme.  He recovered.  If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.  

About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services.  Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you.  Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities.  Also, if you get an LLMD that just doesn't seem right somehow, then switch.  Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

The first one, ILADS, is the main organization for LLMDs.  Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  Well worth reading if you're up to it.  

The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)

Best wishes to you -- stay strong, and come back and visit with us, okay?

and PS about your tests being negative:  the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves.  Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme.  Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system.  Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine:  history and exam, then tests, to come to a diagnosis.  Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.
Related Discussions
24 Comments Post a Comment
Blank
Avatar_f_tn
Welcome to MedHelp Lyme --

I'm so sorry your docs are doing what too many of mine did too:  just blow it all off.  What's good is:  you aren't giving up finding out what's going on.  I admire that spirit.

Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers.  Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.  

There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening.  It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme.  There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme.  He recovered.  If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.  

About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services.  Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you.  Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities.  Also, if you get an LLMD that just doesn't seem right somehow, then switch.  Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

The first one, ILADS, is the main organization for LLMDs.  Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  Well worth reading if you're up to it.  

The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)

Best wishes to you -- stay strong, and come back and visit with us, okay?

and PS about your tests being negative:  the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves.  Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme.  Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system.  Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine:  history and exam, then tests, to come to a diagnosis.  Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.
Blank
867582_tn?1311630997
Thank you so much for you insightful and highly informative response!!  I plan to use all the information you so kindly posted!!

I agree with you that modern medicine has it backward!  I think we could do without our modern med schools which seem to dumb down all who enter.  Med students would do well to get out of their ivory tower classrooms and apprentice with really good established MDs, spending lots of time with patients so they can readily relate symptoms with diseases rather than rely on memorized one-size-fits-all lists of disease symptomatology requirements out of their med school textbooks (which are often wrong).

You said that you were blown off too:  How long did it take you to get your answer?  I'm going on 6 years of looking and bouncing from doctor to doctor.  I'm tired.

Thanks for your terrific post!!

WAF
Blank
Avatar_f_tn
You're so very welcome.  I think I had Lyme, a very low level case of it, for a few years, looking back on things.  I was just tired all the time and had odd symptoms, like the bottoms of my feet hurting in the morning when I got out of bed.  Then we were back east travelling around lots of leafy places, and I got suddenly and dramatically ill about 4-5 years ago.  I made it back home to Calif. and started on the trail of docs to try to figure it out.  I ended up in the ER twice in a week with serious heart irregularities, and the second time the doc, after being really nice at first, came in and rather roughly took the IV out of my arm and told me to leave.  I figured out much later that she must have called my regular doc, who thought I was just low on hormones, and he told her I was attention-seeking or something and to ignore me.  

I went through 20+ other docs over the next year or so.  One very sympathetic endocrinologist ran a bunch of tests including Lyme, and it came back mildly positive.  The doc said it didn't mean anything, but I took the test results and made an appointment with an LLMD ... got diagnosed ... and tho it's not been an easy road, treatment was well worth it.  And it's not cheap, depending on what kind of insurance you have.  But I couldn't think of anything more worth spending money on.

Personally, I think med schools are not looking for the right kinds of people to be future MDs:  today's MDs are mostly all science and math wonks, which makes sense, but if their wonkiness gets in the way of their ability to connect the humanity dots, then IMO they are practicing science, not practicing medicine.  I say this as someone with family and lifelong friends in the medical field -- I appreciate and respect what they do, but their blindspots are not just annoying, they are dangerous.

[Stepping off soap box now.]  Don't give up -- you will find the right doc ... and then still have your antennae up for what the doc is saying and doing:  even the best docs miss things and make mistakes ... they need feedback from us on everything, or they don't have all the data they need.  It's when they ignore what we tell them that it goes wrong.

You hang in there!  The internet is a treasure trove of information and connections, so we have that on our side.  Do read Weintraub's book, esp about Dave Martz.  The scientific parts of it were too much for me the first time, but they're not long and they don't interrupt the story, so you can skip them if they make your eyes cross.  Later on when you're feeling better, then they will make more sense.  Which reminds me, I've been meaning to read the book again ....

Take care!
Blank
428506_tn?1296560999
I know that JackieC mentions him above, but to reiterate, the name that comes to mind in regards to ALS/Lyme is Dr. David Martz.  He was diagnosed with ALS, but was treated for Lyme disease and improved.  He was featured in the Lyme disease documentary "Under Our Skin," and I also found this online video of him:

http://vimeo.com/2074932

I think that his case was an exception and not a rule, but it is an amazing tale.  If you want to research more about possible Lyme/ALS connection/misdiagnosis, his name may be a good lead.  I believe that he is retired now, but I think he did treat a number of ALS patients with antibiotics.

For what it's worth, I tested negative for Lyme over and over, including in my spinal fluid.  I went forward with an ILADS physician, who made a clinical diagnosis of Lyme and co-infections, supported by non-standard tests.  This course was against the advice of my primary care doc and about a dozen other docs/specialists.  I was skeptical, but it seemed like a relatively low risk with a potentially high benefit.  The treatment has paid off for me in a big way, and many of my neurological symptoms (I had lesions on MRI, but was never specifically diagnosed with a neuro condition) have resolved.  I've resumed a challenging full-time career, and have regained a great deal of quality of life.
Blank
867582_tn?1311630997
Wow!  I'm amazed!  JackieCalif, I can relate to your experience of having one of your doctors discourage another doctor's inquiry into your condition, but have never heard of anything as severe as what you experienced:  An ER doctor yanking out your IV and telling you to leave when you had serious heart irregularities??? Hope you weren't billed for that (but bet you were).   Unfortunately another horrible trend I have noticed in American medicine is doctors feeling they are omniscient and can tell when someone is faking it or is a malingerer.  Often they will assign that label to a patient when the doctors can't determine what is wrong.  Or they may call a patient, "narcotic-seeking" just because he/she keeps asking for more pain medication (hint:  the current dose or medication may not be adequate).

Wonko, thanks for your input!  Maybe I've been "barking up the wrong tree" pursuing ALS diagnosis and ignoring Lyme.   The thought of "regaining quality of life" is intriguing!

Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?

Do you think Johns-Hopkins is a good place to investigate?  I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no."  Please let me know your opinion on Johns-Hopkins.  I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.

Thank you both for your helpful posts!


WAF
Blank
867582_tn?1311630997
This will be my last post for a while.  Meant to mention that a couple of years ago I was put on antibiotics for something and actually noticed that I was beginning to have more energy than usual and was starting to feel back to normal.  I wish I had pursued Lyme then.  I have heard that once Lyme goes on for too long, the damage can be irreversible - correct?

Recently I heard in the news that someone treated for ALS died, but on autopsy it was found that he really had Lyme!

Last I will say that the ALS medicos are currently testing antibiotics in relation to ALS - a clinical study.  Hmmmmm.  Wouldn't it be interesting if not only the symptoms of ALS and Lyme are similar, but also the curative treatment of antibiotics?  Wouldn't that be an incredible find for the ALS community!!

WAF
Blank
428506_tn?1296560999
Post away as much as you want, it is normal to have a lot of questions when on a new "lead" for a diagnosis after an ordeal such as yours, and with Lyme & Co. it is particularly difficult in that you really do need to make the conscious decision to go against the grain of mainstream medicine to pursue diagnosis and treatment for chronic Lyme and other tick-borne infection.

I believe that once you have exhausted mainstream medicine, it is appropriate to pursue an ILADS-physician for consideration of Lyme.  Any infectious disease doc at Hopkins will just tell you the status quo, that Lyme is "difficult to get, easy to cure."  If you want to go to Hopkins for *other* specialties, I'd give a green light on that.  But for the purpose of Lyme, as soon as you're considering chronic Lyme, you're through the looking glass so to speak and will not find any supporters of such a cause there.

Lyme patients refer to their doctors as "LLMDs," where the LL stands for "Lyme-literate."  This label does not stem from a particular training or certification, it is a patient-assigned label (most Lyme doctors actually don't care for it!) that we use to designate docs who will consider clinical diagnosis (that is, based on symptoms, not tests) and who will administer long-term antibiotics, often in combination, and supporting treatments (as opposed to the mainstream Lyme treatment of 2-3 weeks of a single antibiotic).

LLMDs treat largely based on their own clinical experience, built from their own patient care.  Of course groups like ILADS exist, so there is some formal professional organization, but by and large LLMD's are somewhat rogue and each approaches the diagnosis, treatment, and management of Lyme a bit differently.

Because these so-called "LLMDs" operate outside of mainstream and insurance guidelines, literally putting their medical licenses at risk, a usual path to finding one is to follow advice from JackieC above and take those links.  Some patient site are large enough, and span enough geography, to maintain regional lists that can be supplied upon request.  It is "taboo" to post the full names of LLMDs, again, because they are at risk and many prominent ones are, or have been, under scrutiny.  Sadly, this also means that most do not accept any form of insurance, and thus many Lyme patients need to pay out-of-pocket for some or even all of their care.  

Does it sound like you are joining a cult?  I felt that way at first, but is really not the case.  Of course, as with any group, there are some fringe members of the Lyme community (not the one here on MedHelp, I'm speaking in general).  But there are also lots and lots of folks such as myself, who knew we were sick yet fell through diagnostic cracks.  As I note above, for me trying antibiotic treatment seemed like a relatively low risk, high potential benefit situation.  As for cost, well, my health had robbed me of the ability to work much, and my then part-time position was about to expire.  So while I don't like paying out-of-pocket for office visits, I ultimately regained my health to support working, and in the end my ability to earn a salary is well-worth it to me.

As for the efficacy of antibiotics in treating other illnesses, I don't doubt it.  There are a multitude of conditions for which the cause is unknown.  I do not think that Lyme and MS are the same thing, but I do think it is possible that Lyme can trigger an MS-like condition (or a lupus-like condition, etc).  As far as I know (you seem to know much more), the cause of ALS is not known, so it could be that, in some cases, it is triggered by Lyme.


I was not as sick as some, but I think it's fair to say that I was very sick before treatment.  I was placed on steroids while undiagnosed, which is a big "No No" for Lyme, as steroids stop your immune system, allowing the underlying infection to get worse.  It took me close to a year of treatment to undo the steroid damage.  I'm just over the two-year mark treating, and continue to improve.  


My Lyme serology was never definitive, and my LLMD speculates that another infection, also carried by ticks (referred to as "co-infections," as ticks can carry many diseases and bacteria in addition to Lyme) is my biggest issue.  Co-infections may only respond to antibiotics distinct from those used to treat Lyme, and this is another reason why some people fail to get better from standard Lyme treatment:  Not only may it be too short, but if co-infections are present, different antibiotics may be required to target them.  

So my bottom line is I don't really know what happened to me.  I do know it took years to progress, for a long time I had a series of symptoms that seemed unrelated, and none of which were serious enough to have much impact on my life.  But in time there was a snowball effect, and my illness was no longer manageable, and that began my year-long quest for a diagnosis.  Had I not made the decision to seek a Lyme doctor, I doubt very much that I would be where I am today.  If anything, I think I would have eventually been given an incorrect diagnosis for a condition like lupus or MS, for which there is no curative treatment.

So do I have Lyme disease, or some other chronic infection that smoldered in my body for years before trying to take over my life?  I may never have a satisfactory definitive answer for that.  I consider myself fortunate for my recovery, and do my best to move on with life.

I see above you note an absence of joint pain.  I do not think this rules out Lyme and co-infections.  I was actually mostly free of joint pain until after my steroid treatment.

Lyme is systemic, so rather than focus on joint pain, I think it's more general to look for systemic systems.  For example, neuro and heart symptoms, or skin problems and neuro symptoms, and so on.  Anytime you see a pattern in which the symptoms experience seem too broad for a single disease, that to me is the red flag for infection.  But again, at first it can be unclear, and I spent a year thinking I had a neurological disease because my symptoms were predominantly neurological.

As far as damage from Lyme being irreversible, I'm sure there is some truth to that but if you dig around for patient testimonies, you'll be amazed at from what point people return.  I was a wreck, and I thought I was either dying slowly or was doomed to retire by 30 and spend the rest of my life as a burden on my family.  I feel like the "Unsinkable Molly Brown" in terms of my ongoing comeback.

And in response to the side conversation, my trust in medical doctors has also suffered a terrible injury from my ordeal.  I try to not even think back to the dismissive attitudes I faced in the office of many doctors and specialists, as it was terrible to endure that sort of doubt and lack of validation.  I've grown to accept that the label of chronic Lyme I will never receive any validation from mainstream medicine, nor most people, some friends and family included.  In my life it works best for me to hide my condition and only share details with those I know to be capable of understanding.  For that reason, patient sites are of high value to me.  It was through such contact that I finally got the nerve to book an appt with an LLMD.  

Of course there is no guarantee that you have Lyme, but I'll repeat myself that antibiotic treatment is a relatively lost risk, high potential gain option.  
Blank
Avatar_f_tn
I agree with pretty much everything Wonko says ... and to answer your two specific questions:

1--Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?

I don't know -- my muscles aren't what they used to be either, and I think it's feeling so lousy that I don't do the things that I used to do, so I've lost muscle mass.


2--Do you think Johns-Hopkins is a good place to investigate?  I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no."  Please let me know your opinion on Johns-Hopkins.  I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.

I agree with your approach to find an LLMD first, and then if you get a clean bill of health, then go to Johns Hopkins for the 'big thinking' they do there.

Let us know how you do!  Best wishes for a good doc, a good diagnosis, and a full recovery --
Blank
867582_tn?1311630997
You have both given me excellent answers that will help me greatly in pursuit of a diagnosis!!  

Years ago when I saw that $@&%  "ID specialist" I also had felt that the risk of antibiotic treatment was well worth taking but he refused to pursue that route despite my willingness to do so. I would subject myself to almost anything to stop dying, to become stronger, to get back to almost-normal as you two have done.  

I know I am worsening, am dying - sometimes with very scary snake dreams.  My scariest time is at night due to breathing issues despite an elevated head of bed, side sleeping, and nighttime BiPap breathing support.  Without that breathing support, I'm sure I would not have been here now.

Unlike you, my symptoms do not run outside the parameters of one certain disease:  ALS.  My symptoms actually actually fit quite nicely within the parameters of ALS. For instance, among other symptoms, my mouth and cheeks currently feel so very weak! I'm eating all the "forbidden" and favorite foods now in preparation for the time when I may require a PEG tube for sustenance.  Sadly, there is currently what appears to me to be nation-wide suppression of ALS diagnosing!! It is pathetic that individuals afflicted with such a horrendous disease as ALS are being deliberately lied to, stalled, kept in a medical "holding pattern", and denied diagnosis (especially if they are in their mid 50's to about age 67).  Once past the maximum age of being able to get governmental disability, diagnosing is easier to come by.  It is a national shame!!   MS diagnosis is also very hard to get now unless you have exactly the right number of lesions on MRI in exactly the right textbook-prescribed places.  I am even aware of someone with MS symptoms and the perfect MRI image of MS who was denied an MS diagnosis because of his age (60s).  Others have had their legitimate MS diagnoses taken away from them.

Wonko, I'm glad you were able to recover from the damaging steroids!  Maybe they thought you had MS. Steroids can bring on diabetes!!  I hope you didn't develop that. Like you used to believe, I strongly feel my condition is neurologic.  

JackieCalifornia:  Our muscle wasting occurred differently:  Yours was from disuse whereas mine was from actually using the muscles involved which caused  their wasting.  I traced it to a month-and-a-half of my folding up my treadmill because that action used exactly the muscles which then withered.

An excellent book I recommend reading (for anyone with illness not being properly treated through the conventional medical approach), is "Lean On Me" by Nancy Davis.  She has MS and her diagnosing doctor told her to just "Go to bed for the rest of your life."  She proved him wrong by using various alternative approaches to treating her MS.  Currently, she is on no official MS medication and she is a beautiful and strong woman, still with MS.  Doctors wanted to put her on steroids, but after researching and finding the steroid-diabetes connection, she refused.  She advocates patient knowledge and the patient's having the final say on any medical treatment as well as using various sources of treatment - not just the conventional medical approach. Her book is empowering and worth reading!!  Your library may have it or it is available on Amazon.com really cheap.  You have already done what she advocates doing - thinking for yourselves, researching, and finding your own way to a cure!  She might suggest an avenue you had not considered - so I still think her book is still worth your reading.

I'm going to have my ALS investigated, again, soon, but doubt I'll be diagnosed whether or not I have it (due to what I have already stated above).  Sometimes, doctors have even refused to do the diagnostic testing needed to confirm diagnosis of ALS in the presence of  a classic, textbook ALS symptoms.  My opinion is, neurologists are being pressured not to diagnose ALS (until the final stages).  ALS is not that hard to diagnose - for example, Lou Gehrig was diagnosed with ALS after 6 days of testing and he was not that far advanced -  he could still play baseball!!  

Once denied ALS diagnosis, I'll look into Lyme (what else can I do except that or go outside this country for perhaps a more honest answer).

Anyway, I treasure your responses! Sometimes when I realize the huge amount of money and effort I have already spent on medical inquiry without any answer, without a diagnosis, it makes me want to just give up and let death take me.  But knowing that because you persisted despite being rebuffed medically, realizing that you were not crazy, that your symptoms were real,  that you found your truth, the answer, the key which allowed you to regain your quality of life (Lyme is treatable - which I find thrilling!!) I will continue, will not give up, until I, too, have either found that what I have is not treatable or am restored to my former quality of life!!

Thank you, again, for your kind insights and suggestions!!  I will use them to go forward!!

Hugs to you from WAF!      
Blank
867582_tn?1311630997
I just read Dr. Martz' story!  Sheesh!!  If his idea about Lyme/antibiotics had not serpentined relentlessly through his mind he would be dead now!!!  Amazing!! Inspiring!!

I visited the CALDA site and read that interesting info.  One thing:  I don't have pain of any kind (except when my neck muscles get tired of holding my head up - goes away with a brace).  Still not sure it's Lyme (but hoping it is - so can treat).

Thanks again!

WAF
Blank
Avatar_f_tn
Keeping a good thought for you -- let us know how you do!
Blank
867582_tn?1311630997
Thanks!  I just came back from an appointment with a highly-recommended Lyme-savy N.D.  A very professional and interested doctor - spent almost 2 hours with me!!  I never felt more listened to and she was very thorough in going over all my lab tests.  She says my symptoms seem like either Lyme or MS.  She really zeroed in on all my prior studies - didn't miss anything!!  Put together a plan for me starting with re-testing for Lyme after stoking my antibody production.  I'm very excited about being on my way to possibly getting a real answer and treatment for my symptoms!

One question for you:  Have you ever had a Herx reaction?  What is it like?  Can you be laid up in bed from a Herx reaction?

Thanks JC!!

WAF
Blank
Avatar_f_tn
Congratulations!  Finding the right doc is the most important step imho, because without that step, the rest is all much much harder.  Don't fall in love too hard, tho, because docs are after all only people, but this one sounds like she has wings and a halo!  Yay!

Most of us have Herxed, and it's different for everyone and different in the same person at different times.  For me, it's a worsening of symptoms, sometimes just enough that I feel like I'm coming down with a cold or a bug, kind of draggy, achy, dull.  Then a day or so later when I am coming out of it, I realize it was a Herx!

I also feel that same way when I'm just having a flare up of symptoms, so it's hard for me to tell the difference.  

If the meds you are on are really giving the bugs a pounding, the Herx can be stronger, deeper and longer, and a severe Herx can, so I read, be dangerous, but I've not read that I remember of anyone being really hurt from it long term, tho I suppose that could happen.

What's happening in a Herx is that the meds are killing the bugs, and when their evil little bodies explode, the trash they leave behind is an irritant to your body, and it take a couple of days for your body to take out the trash and get the place tidied up.

Your doc may tell you if you get really bad Herxing to let her know and she will decide whether to cut back on the meds dosage, but that should always be done with your doc's okay, not on your own decision, because keeping steady levels of meds in your body may be important.  (Some treatment schedules use 'pulsing', in which meds are given at higher and then lower doses and then higher and then lower, in waves.  That's something your doc would talk to you about, and I wouldn't do pulsing on my own without medical guidance.)

Personally I found the disease much much worse than any Herxing I had, but for some people, the Herxing is not that easy.  Bottom line:  don't worry -- you'll get through it.

Let us know what happens and how you do -- pretty soon you'll have to change your screen name (from Weak and Falling) to Up And Dancing.  :)

Good for you!!!
Blank
Avatar_f_tn
Hi there!
I've been posting for the past almost 4yrs. I got Lymes with the bulls eye rash and a postive test 24yrs ago. Unfortunately I was undertreated. A couple years later I felt awful again and got a Lymes test twice that came out negative. Six weeks after that my test came out positive. Then I received IV antibiotics. I felt better and went on my way. Fast forward many years later. Four years ago I started to have familiar symptoms of Lymes. I went to my doctor who specializes in Infectious Disease and asked him for a Lymes test. He said NO..I don't need it. Two weeks after that the world caved in on me. I was so sick like having the worst flu, the pain in my muscles and bones throughout my entire body made me scream and I had awful painful sharp pins and needles throughout my entire body. I went to many many doctors of all types and got admitted into one of the best teaching hospitals in Manhattan, NY. They did an entire work up on me just to let me go with a diagnose of "I need therapy and it's all in my mind". Please keep in mind that I was still begging for a Lymes test. One week after getting out of that hospital I was admitted to another teaching hospital for a week. No one would give me a Lymes test. I had bleeding ulcers in my descending colon but no colitis and my pancreas and liver enzymes were elevated. My blood pressure was eractic and so was my pulse. My pulse would go from 45 to 166 in a minute. Out of control. They gave me a heart catherization which came out clean. All this time my RA Factor was high and my ANA went positive indicating an infection. Then one day I brought my husband to my rhuematlogist and cried to PLEASE give me a Lymes test. He did. It came out POSITIVE!!  What's wrong with these doctors????? If they just gave me my Lymes test 4yrs ealier, I wouldn't be suffering like I am today! I had a PICC line put in and got IV Recefin for 28days. My doctor said all the parasites are dead but I won't feel any better. I found myself a wonderful LLMD who also has Chronic Lymes for 20yrs. This doc tested my CD57 and it was low meaning my immune system is low. Lymes made it low and caused me to have Candida Albicans in my blood which in turn made me very acidic. Lymes also gave me Hashimoto's Thryriodosis (autoimmune desease of the thyroid). I keep taking tests and my Lymes is consistantly positive, my RH Factor is high, my ANA goes positive then negative. My muscles are not the same!!!! I am not the same and I fear that I will never feel good again. My LLMD is trying to get rid of my Candida which will make my PH normal. Then the doc wants to restart me on the IV antibiotics. This will hopefully put me in remission again. I have Chronic Lymes and I will always have it. I was told that. I just have to stay in remission. The Lymes triggered an autoimmune phenominon which can't be turned off. I'm taking Plaquinil and anti fungel meds along with many suppliments and some herbs. I'm also taking Gabapentin (Neurontin) for my Neuropathies.
That's my story after being misdiagnosed with RA and being nuts. I have high hopes with my new LLMD which my other doctors disagree with . This doc looks outside the box like ALL doctors should.
Hope all of you are feeling better and have a Great Holiday and a Very HEALTHY and Happy 2011!!    
Blank
Avatar_f_tn
Forgot to mention....My new LLMD took tests for co-infections. Yep..got it.  
Ask you doctor to send your blood work to Igenix Labs in California. They KNOW how to test for Lymes!! And they also swab the blood and put it under a microscope. Now I know what shape may parasites are. AWFUL!! Other labs will probably come out negative while this CA lab would show positive.
Let us know.
Blank
867582_tn?1311630997
Hey, thanks for the valuable input!!

JackieC, thanks so much for the details on Herx reaction.  I'm a little scared about it, but my wonderful new N.D. gave me explicit instructions about taking the Cat's Claw - to drop back on the dosage if symptoms increase.  It's worth the risk to hopefully have a valid Lyme test.

Lori707 - thanks for the lab suggestion.  Will mention it to my N.D.  Lori, what you, too, have been through!!!  The expense, the nonsense!!!  Haven't most of us heard the psych-cop-out-conclusion from doctors who either can't or don't care to bother to find our real diagnosis!! Your unsuccessful request for a Lyme test reminded me of an unfortunate woman in our town who begged for treatment with Tamiflu.  She had been taking care of her mother, who was diagnosed with Swine Flu, and had developed symptoms identical to her mother's Swine Flu symptoms:  Duhh - A no-brainer, right?  Yet four days of pleading with hospital people trying to get them to give her Tamiflu and other traditional Swine flu treatment resulted in the hospital people just saying that her rapid flu tests were repeatedly negative so, despite obvious symptoms and the obvious 1+1=2 logic that it should, indeed, be Swine flu, her symptoms were ignored in favor of the negative diagnostic tests, and so they just let her die of what turned out to be, on autopsy, (surprise!) - Swine Flu.  That speaks reams about the state of American medicine today:  Big expense, over-reliance on diagnostics, arrogance coupled by little, if any, value for the money spent.  I'm beginning to think that M.D. means "mostly dumb" and N.D. means "not dumb."  That's all my opinion.

WAF
Blank
Avatar_f_tn
Wow! That poor women! Most doctors have to see something in black and white print before they react and UNFORTUNATLEY they DON'T look outside the box! This is just a business they're running. When the doctors changed their hours to 9-5 Mon.-Fri. like most offices, I said to my husband that it scares me! Most doctors don't want complicated cases because it's more work for them and they can make the same money on someone who comes in to see them with a muscle pull. They have the right to have a life of their own and spend time with their families but these people CHOSE to be a doctor and that means to HEAL people and CARE for them. I hope some doctors are reading this.
Blank
867582_tn?1311630997
I want to restate my position on MDs.  Having had so many bad experiences myself of being not listened to, deceived, and blown off by many MDs and then reading about Lori707's bad experiences and others' bad experiences here mobilized a tidal wave of negativity that caused me to speak possibly too harshly of MDs.  Yes, they should think outside the box (i.e. think beyond just the labs and other diagnostic results).  Yes, they should listen more to patients, trust us more, hear and realize the importance of our symptoms - which are real and not necessarily psychological - and they should understand the importance of our getting a diagnosis so we can receive appropriate treatment which might allow us to get back to normal again.  However, still there are some very good MDs out there, a couple of whom I have as specialists (yet I'm having trouble finding a good neurologist).  MDs aren't all bad.  I applaud the MDs who are doing right by their patients, those who are really trying to find answers, and who are not settling for just the easy cop-out.   I hope beyond hope that their numbers increase!!

WAF

Blank
Avatar_f_tn
Weak and Failing ...

I hear you.  A good rant cleanses the soul, as I have found through personal experience.  I have witnesses.  :)

You take care.  Thanks for the post.

Jackie

Blank
867582_tn?1311630997
Thanks for your understanding!

WAF
Blank
Avatar_f_tn
My 11 year old son has been sick for a year. After many tests and procedures I asked for referral to infectious disease Dr because ifelt his symptoms sounded similar to lymes symptoms. Screen test for lymes was positive but the western blot or whatever test didn't give high enough result for him to say my son has lymes. I'm so frustrated I want to scream. My son always ask me to fix his bokenness and he asked me once if he was slowly dying and I just cried. All I ever hear the Drs say is he just has such strange symptoms.  I'm not going to get any help going through the hmo hoops. Can anyone tell me who is lymes knowledgable in spokane washington
Blank
Avatar_f_tn
I too would get my kid to an LLMD.  

I not sure if we have anyone here who is from your area, but by doing some simple google-type searches online, you will find website with referral functions.  Here are two searches I just did that turned up some interesting possibilities:

llmd spokane

washington state lyme literate doctor

lyme disease association doctor referral

Also try ILADS [dot] org, the main voluntary group for Lyme docs.  They may have a referral function too, or a list of member-docs that you could browse.

You might also search Idaho, of course, since I know Spokane and Seattle aren't near each other.

Some states don't allow docs to practice according to their consciences, but I don't know exactly which are which ... if you are coming up dry in one state, try another search, but I think Washington is okay for LLMDs from what I've just seen online.

Don't give up -- don't give up -- don't give up!  Sending you all good wishes --
Blank
1763947_tn?1334058919
Hi, now  I am really confused. I take the gabapentin but for my neuro Lyme, I was told by a Dr who also has lyme never to take plaquinol or prednisone because it can help to destroy an already compromised immune system. Since he is a Doctor and has neuro lyme, I listened to him but it is all so confusing.
Blank
Avatar_f_tn
I don't know anything about gabapentin, but I think it's pretty well established that a bacterial infection (including Lyme) is not treated with immune-suppressing drugs like prednisone, because the immune system needs to be active to kill the bacteria.

I can't at a quick glance see what comment you are referring to, but my understanding is the same as yours.

There is some confusion in the medical world, because nonLLMDs will treat Lyme with a few weeks antibiotics, and any remaining symptoms are deemed 'post-Lyme', meaning that the Lyme bacteria are all dead and gone, so any continuing symptoms are your immune system over-reacting to bacteria that are no longer there.  (Like after you've been mugged, you'll jump when you hear the smallest noise while walking down the street.)

LLMDs take a contrary view, which seems more reasonable to me:  if you still have symptoms, you are still infected, and it means the treatment was not complete.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Lyme Disease Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Infectious Diseases Answerers
1763947_tn?1334058919
Blank
mojogal
Venice, FL
Avatar_f_tn
Blank
cave76
Avatar_f_tn
Blank
Ricobord
CA
Avatar_f_tn
Blank
JackieCalifornia
Avatar_f_tn
Blank
Elleon_arual
4451049_tn?1387157037
Blank
Ephedra