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Avatar universal

Getting tested again...sigh.

So I've been on an epic adventure with attempts to figure out what's wrong with me for about five years now.  MS was pretty much ruled out after having been the prime suspect for a number of neurological causes.  Many MRIs, two EMGs, an EEG, evoked potentials, EKG, an allergy test, and various other forms of human experimentation haven't really shown anything wrong, aside from having been diagnosed with cluster headaches.  I've had tons of blood tests--CBCs, hormone levels (thyroid, testosterone, free testosterone), HIV, Lyme, ANAs, Rheumatoid factor, sedimentation rate, some kind of inflammation-detecting test...all normal.  Most new doctors I've gone to have been freaked out when I tell them about this stuff, but then they see my labs and basically act as if I am insane.  I have seen a psychiatrist monthly for four years largely because of this, and she tells me I am not insane or imagining it, but has no idea what it is and just works with me to manage anxiety and depression.  My current neurologist told me the last time I saw him that there is definitely something wrong with my body, but that with the labs as they are, there's no way to know what it is and we'll just have to wait.  

My first symptoms were numbness and tingling in my feet, legs, hands, and face, hearing loss in my left ear and blurry vision on and off and dizziness.  Those waxed and waned, and about two years ago I started getting severe pains in my shoulders, elbows, neck, even my jaw sometimes.  My left leg is stiff and uncoordinated now and then.  Still have the ear and eye problems...and extreme fatigue.  I also have a lot of skin irritation, sometimes itchy, sometimes burning.  Sometimes I can't think clearly at all--brain fog is an apt description--which is a problem for an editor, and several months ago, out of nowhere, I was sipping coffee in the morning and had a sudden attack of vertigo more severe than I've ever experienced.  I had to crawl to the bathroom because I couldn't even stand up, and it felt like the floor was moving under me.  I threw up several times, and then lost consciousness.  The doctor did a blood test and an EKG and told me I'm fine.  Which is kind of great news, except that I'm SO far from fine.

My mother says that I was diagnosed with Lyme around age 18, just before I was admitted to college, and that the doctor gave me antibiotics and then said I should be fine.  I don't remember that at all.

My questions/discussions for people here are twofold.

First, for those of you who have been positively diagnosed with Lyme, do your symptoms come and go as they do in multiple sclerosis?  Sometimes I feel pretty much fine, and then suddenly I am hit with all these symptoms at once and feel like I imagine a 90 year-old might feel after a tiring day.  Except that I'm 36.  I know that Lyme symptoms are as variable as MS symptoms, but do they also come and go?  The fact that I go through periods of "remission" and "flare up" might rule out Lyme after all if that's not a characteristic of it.

Secondarily, at this point I am trying as hard as I can to will myself back to life, and I'm willing to try practically everything.  After reading a bit about Lyme and how difficult it is to diagnose (and to treat with antibiotics), I started reading about natural treatment with supplements.  Since they're natural--I'm talking about herbal extracts, not colloidal metals, chemicals, etc.--I figured it probably couldn't make things much worse if I tried them.  So I bought a bunch, from astragalus root to olive leaf extract, to teasel root tincture, and I've been taking those for about a week.

I've read that sometimes Lyme has to be treated *before* it can be detected in blood tests.  I started taking these supplements about a week and a half ago, and I'm getting another Western blot test tomorrow, but I'm not holding my breath.

I've read a lot about "herxing," as well, and about four days after I started taking these supplements, I got the left ear hearing loss, numbness and tingling that I get sometimes, and then I woke up with severe soreness and pain in my shoulders, neck, knees and back, and I've had all kinds of issues since then.  I know that "herxing" is different for everyone, but for those of you who have gone through that, does the timeline sound familiar to you--about four days after treatment for it to begin?

I'm not a detective, but I am doing my best to figure out what is up with my body based on the resources I can find.  

So anyway.  I'm ranting here, and I apologize for that.  I guess I am just here (again--I was here on the neuro and MS forums a lot four years ago or so when all this first started) hoping for some answers.  Thanks to anyone who might have some.
23 Responses
Avatar universal
Welcome -- you're in good company here.  Many and perhaps even most of us have been through some version of your 'epic adventure.'  

Given the workups you've already had, and that you're now here on the Lyme site ... let's talk Lyme and its possibilities.  You know the old story of the elephant and the blind men, where each man describes what the elephant must look like, based on the one part of the elephant he happens to be touching?  What an apt metaphor for Lyme!

The docs focus on the symptoms that fit a paradigm familiar and comfortable to them, but they never manage to pool their impressions and 'see' the bigger picture.  In Lyme, the neurologists focus on the nervous system; the infectious disease docs focus on rashes; the shrinks focus on mood; and on down the list.  And it sounds like you've been through the whole clown circus of docs.  

Because Lyme is a relatively recent arrival to the infectious disease world, different groups of docs have focused on the symptoms that are most significant to the area of medicine that each doc specializes in.  Thus they keep looking at the details and fail to see the big picture.

It's good that MS has been ruled out; you can take it off your list.  Sounds like you've had a fairly thorough neuro evaluation too.  The wide range of symptoms and effects on both your joints and muscles as well as your cognitive functioning pretty much covers the waterfront.  The problem is that docs look at the bits and pieces instead of the whole person to seek a unifying diagnosis.  Given that your docs have ruled out all the obvious stuff, then Lyme is something I would look into more deeply.

Lyme is a systemic bacterial infection, in the same family as syphilis.  It spreads throughout the body and gives a long and lasting list of symptoms that don't fit neatly into a box.  In addition, Lyme often brings with it one or more other infections which not only increase the misery but also confusion the diagnostic picture, which is partly why MDs are so out to lunch.

The laundry list of testing and evaluations you have been through are sadly not uncommon.  It took me 20 docs to finally run a Lyme test, but when it came back positive, she dismissed it as inaccurate, because I didn't look sick enough.  (Actually, what she said was, "I have patients with Lyme, and they are all near death" -- and since I was simply dreadfully ill, I "couldn't possibly have Lyme.")

You say, "My current neurologist told me the last time I saw him that there is definitely something wrong with my body, but that with the labs as they are, there's no way to know what it is and we'll just have to wait."  Neuros are known to be utterly blind when it comes to Lyme.    

The list of symptoms you give ("My first symptoms were numbness and tingling in my feet, legs, hands, and face, hearing loss in my left ear and blurry vision on and off and dizziness....etc") are not inconsistent with Lyme.  The docs are all scared into obedience by the CDC (Centers for Disease Control) and the higher ups there and in medicine generally, and it's that senior level of MDs who have staked their licenses and reputations on Lyme being rare, hard to get, and easy to cure.  

That's pretty much how AIDS was viewed in its early days -- the head honcho at CDC went on broadcast TV [pre-cable] to state flatly that if you were not Haitian or gay, you could not get AIDS.  Full stop.  That same tendency to stupidity shows in the current dogfight over Lyme.

You say:  "My mother says that I was diagnosed with Lyme around age 18, just before I was admitted to college, and that the doctor gave me antibiotics and then said I should be fine."  That could be true, but ONLY if you have only Lyme and not the co-infections the 'Lyme' ticks also carry about half the time, because those other infections do not usually respond to the first line treatment for Lyme, which is doxycycline.  Doxy works early in a Lyme infection, and only against Lyme bacteria -- the problems being that none of us knows when we were first infected, and without careful workup and testing, the doc doesn't know what infections the ticks brought that don't respond at all to doxy.

To your questions:  

"do your symptoms come and go as they do in multiple sclerosis?"  Maybe.  Everyone is different, partly because some experience Lyme as mostly neurologic (including 'brain fog'), while others suffer joint and muscle pain -- no two cases of Lyme are exactly alike, partly because Lyme has a variety of manifestations, and partly because of co-infections that bring their own brands of misery.  Stir that around and it's hard to diagnose for anyone except a highly trained and aware Lyme specialist.

"I know that Lyme symptoms are as variable as MS symptoms, but do they also come and go?"  Yes, in some people they can.  That's part of why the medical community having such a hard time with Lyme.  It waxes and wanes in some of us.

You say:  "After reading a bit about Lyme and how difficult it is to diagnose (and to treat with antibiotics)" -- it's difficult only for docs who don't know what they are talking about.  It sometimes takes a bit of time for a doc to tease out co-infections that are hiding behind the mass of symptoms from Lyme and other co-infections, and a wise doc will keep watching as treatment progresses, to see what is unveiled.  The Lyme bacteria have the ability to go into hiding in slimy areas called biofilms, and the immune system can't kill what it can't see.  Mix that with the maybe 3 or 4 common co-infections, and it's definitely confusing and requires a subtle and careful doc to keep maneuvering.

"I started reading about natural treatment with supplements.  Since they're natural--I'm talking about herbal extracts, not colloidal metals, chemicals, etc.--I figured it probably couldn't make things much worse if I tried them.  So I bought a bunch, from astragalus root to olive leaf extract, to teasel root tincture, and I've been taking those for about a week."  These meds are chemicals, whether they come from the backyard or the health food store or Big Pharma.  Be sure your doc knows what you are taking -- ALL of it.  Some posters here have done well on herbal treatment, esp. those who can't tolerate antibiotic treatments.  I was fine on antibiotics, and they worked very well.  It takes a wise and experience Lyme doc to keep all this working together.

"I've read that sometimes Lyme has to be treated *before* it can be detected in blood tests."  It depends on the kind of test.  You might accidentally cause test results to be skewed by taking supplements that your doc does not okay, and thus confuse the diagnosis.  Always confer with your doc before starting or stopping any kind of treatment, or if you done so now, alert him/her to what you took so it can be factored in to the test results.

About herxing, it is different for everyone because of the different infections, the different meds, and your individual immune system.  Some people Herx badly and have to reduce or stop meds; others have no noticeable Herxing (I didn't.)  Important thing is to keep your doc in the loop on everything before and after you try it.

Bottom line:  finding a good Lyme doc is the most important step.  If you need help finding one near you, let us know.  We do not post Lyme docs' names in public to protect them from sometimes rather vicious medical boards, but there are ways to do these things discretely.

It sounds like you are figuring things out and keeping at it -- that's exactly the mindset and approach that is needed in Lyme and its co-infections.  The most important thing is finding a doc to work with you in the same way.  Good for you for plowing ahead -- keep us posted!
Avatar universal
I too had and still have the.numbness and tingling in both arms and legs   Then it moved into my face and head. Mostly peripheral nervesI also get a few flare ups.  I have not tested positive for lymes, but my doctor believes clinically I have  it.   Based on symptoms and elimination of other diseases etc thru blood test.    I started on 200 mg. and within 2 weeks felt a difference.  I have been on doxy for 2 months and slowly! Feel milder symptoms.    
1763947 tn?1334058919
I was misdiagnosed with MS, lupus and several other illnesses before finding out I had Lyme and several co-infections.

I have gone through 2 years of antibiotics treatment and then a year of an herbal protocol.

I was feeling a lot better until Christmas time when my children came to visit, I over did things and am now experiencing a bad relapse.

So yes it is possible for symptoms to come and go. What really shocked me was how brain fog came back big time after I did too much. I didn't realize that could come back but it did. Now I am fighting to get back to where I was before the holidays.
Avatar universal
Jackie, thank you for the extraordinarily thorough and just plain extraordinary reply.  It's going to take me a day or two to absorb everything you've written, but I'll probably write more after I'm able to do that.

Aside from all these problems that have affected my life so severely, I'm really disturbed by everything I keep reading and seeing about CDC regulations and how doctors are being persecuted and prosecuted for treating patients.  It's getting to feel almost like a "Matrix"-type of rabbit hole that just fits all too well with a surreal experience I had with the CDC and the Census Bureau back in September, but that's another story entirely.

I know that I should ideally be under the care of a doctor.  Unfortunately, I just don't really have a strong relationship with a primary care provider.  When I moved into Washington, D.C. and needed a doctor, it took me literally three months to find someone who was even willing to see me...every single office I called said that they were not taking any new patients no matter how sick, with the exception of two that said they were only accepting HIV-positive patients.  I found my doctor's office through a coworker, but it's in an inconvenient location that is hard to get to given my schedule and location, and although they all seem very kind, they don't really feel like a case-management type of practice to me...more just to rule out emergencies and then send me on my merry way.  That's my excuse for trying some supplements; really, I think I am just hoping for a miracle to cure me. :-/

Jamie, I'm sorry to read about your troubles, but it sounds like your treatment is working...??  Mojo, yours is an interesting case...two and a half years of progress, and then a sudden "relapse"?  That's discouraging.
Avatar universal
About finding a doc to work with:  the first step for many of us seems to be recognizing the mess the medical profession is in when it comes to prevalence, diagnosis and treatment of Lyme and its co-infections.

I got my first Merck manual many years ago by chance -- it was on remainder at the Barnes & Noble outlet in lower Manhattan, and I just stumbled across it, having no idea there was such a wondrous book.  I still consider it a magic decoder ring for what the medical types say in assessing, diagnosing and treating a patient's situation, and it also taught me to watch for blind spots in the approaches docs take.  

I don't ever tell my docs I am a fan of the Merck manual, because they just roll their eyes and figure I'm going to freelance on my treatments -- but instead, my purpose and approach is to identify blind spots the docs have about my condition so that I know it's time to look for a second opinion.  Sometimes those blind spots are the size of Nebraska, and it's not only in connection with Lyme.  

(Some years ago, I had appendicitis but was assured I was fine by a half dozen MDs both before and after my appendix ruptured and permanently damaged a kidney, besides nearly killing me.  My favorite doc quote:  "I'd say you have appendicitis, but you don't look sick enough to me."  I guess only 'dead' approximates looking 'sick enough' when it comes to a ruptured appendix.  Sigh.  After I was kept overnight in the hospital and then discharged the next day [after my appendix had ruptured], one doc shook his finger in my face and said 'Don't ask for surgery you don't need.'  It was that doc and several others who did not believe I was ill, and that is a fine parallel to what is happening with Lyme today:  the nonLLMDs docs just don't perceive the seriousness of Lyme and its co-infections and the need to fully diagnose and fully treat each of those infections.)

So when I rant a bit here about the docs not paying attention or understanding Lyme, it's to flag for you all not to assume that all the docs work out of the same rule book about how to diagnose and treat whatever it is you've got.  The split in the medical community about how serious Lyme is or is not is not well known except among us the patients who have lived through it.

Lyme can (but likely won't) kill you, but it will mess with you and your life in very unpleasant ways for a long, long time if it is not treated, both Lyme and its nasty little friends, the co-infections.  As research progresses, I expect there will be more understood about the effects of Lyme on the heart and other necessary functions, but for now, most docs don't have a grasp of it.  

Someday this will all be sorted out, but for now, Lyme is very much misunderstood in much of the medical community, and recognizing that and finding a doc who *is* clued in is critically important.  So keep in mind at all times this split in the medical community, and learn to distinguish between docs who have an open mind about Lyme and those who don't.

Carry on!
Avatar universal
Specifically on the find-a-doc issue, you say:

"I know that I should ideally be under the care of a doctor.  Unfortunately, I just don't really have a strong relationship with a primary care provider.  When I moved into Washington, D.C. and needed a doctor, it took me literally three months to find someone who was even willing to see me...every single office I called said that they were not taking any new patients no matter how sick, with the exception of two that said they were only accepting HIV-positive patients."

If your insurance requires you to go through a gatekeeper/primary care doc in order to be referred out to a specialist to evaluate you for Lyme or other similar ailment, you could try appealing the decision on the basis that your PCP has not come up with a diagnosis that works or whatever the situation is, and ask for a waiver to allow you to see a specialist to evaluate you for Lyme.

If you are allowed to see any doc and not just one approved by your insurance (or in your in insurance network), then break open your piggy bank and ask family to contribute to pay for a consultation with a Lyme specialist outside your health insurance network.  

You can't force a doc who doesn't believe much in Lyme to suddenly start thinking like a Lyme specialist, but if you can get a diagnosis from another doc, at least then you will know what you have, and you can then appeal to your insurance carrier to pay for the other doc and your treatments.

If your insurance company won't do that, then your choice would be to go outside network.  Many policies will reimburse for at least part of out-of-network docs and testing and treatment, but the first step is a *diagnosis.*

Once you have the diagnosis, then go to the second step of finding a way to pay for it, whether through your insurance, from your savings, from your family, from your friends, or from a Lyme charity.

Whether you have a good relationship with your network primary care doc or not, think outside the box of the possibilities and know that you may have to pay for tests and care and meds that you don't want to pay for, or can't pay for.  At that point, your options are to (1) go into debt and/or (2) appeal to charity and/or (3) pass the hat among family and friends.  
Avatar universal
Well, yesterday was an absolute nightmare. I met an old friend for brunch a couple blocks from my apartment and then was planning to exercise and then visit family.  Instead, 45 minutes into brunch I started feeling lightheaded and hot.  Suddenly I had complete vertigo and my friend had to walk me to the bathroom (I couldn't stand on my own) so I could vomit.  She had to drive me home, and every time I opened my eyes to try to give her directions it triggered vomiting.  Had to pull over four times.  I cried from frustration and the humiliation of puking and staggering around my apartment complex before noon looking like a drunk (I had no alcohol--haven't for months).  We finally made it here and I got in bed.  I didn't sleep a single minute, just lay there in a rollicking nightmare.  I was extraordinarily uncomfortable but any slight movement to adjust my body or even opening my eyes a little resulted in  throwing up--over ten times altogether, all the contents of my stomach.  The light was kind of pulsing like a strobe light when I did open my eyes.  Eventually around 7:00 I could move around a little but was still very nauseated and felt a little out of it.

This exact same thing happened to me back in September for the first time.  I went to the doctor, who ordered another MRI and who did lots of blood work and an EKG--everything normal.  People suggested food poisoning but the doctor said that was unlikely due to not having had diarrhea and no evidence in blood.  She said it could be benign vertigo.  Hardly benign.  I was completely incapacitated.  If I had been driving, it would have been a dire situation.

There was no pain whatsoever; the only other symptom yesterday was buzzing and tingling in my left ear, which I've had for a week or two.  That also accompanied the dizziness in September.  Today I feel weak but not as dizzy and the buzzing in more pronounced and I have a mild numb feeling on the whole left side of my face and neck.

Some people i talked to last night suggested it could be the flu or some other virus.  Could it?  I have no sinus, throat, head or stomach pain.  I feel like this is definitely linked to all the other problems.  Could it be anxiety?  I suppose that is possible, but I really was looking forward to seeing my old friend yesterday and was in a very happy place.

:(
:(
:(

Do I go back to my doctor for them to tell me they did tests last time and can order them again but expect them to be ok and suggest I take a vacation?
Should I go back to my neurologist for him to tell me it could be x or y but I've been tested for w x y and z and so it's probably just stress and I should find a better job?
Should I go to my shrink for her to give me more antidepressants that don't do anything to help?
Should I jump off the roof so that these things will stop happening?
I'm kidding about that last one, but honestly how can this be my life in the mid-30s?
Avatar universal
I just sent you a private message through this website about finding a good doc near you for a work up.  One of the best known and highly respected LLMDs is in your area, and there are others too.  The info I just sent has names and contact information.

Navigating this website can be a headache all by itself when you're not feeling well, so if you can't locate the private message, let us know and we'll give more directions.

You've come this far -- now's not the time to give up!  You go!  
Avatar universal
The reason doc's names are usually not posted in the open here is because there are states in which the medical board frowns on ILADS-style aggressive treatment of Lyme and its various co-infections.  Those medical boards can cause problems for MDs who follow ILADS guidelines for diagnosis and treatment of Lyme etc.  

There are exceptions, such as docs who publish and are already 'out' in the public eye as being LLMDs/ILADS-style docs -- but it is often very difficult to know exactly who those docs are and which docs are trying to stay undetected by the local authorities.  All very cloak-and-dagger, and someday it won't be this way -- but for now, we need to protect our docs by not naming them in public.
Avatar universal
Thanks, Jackie.  I understand, at least to a certain extent, about the challenges with the doctors.  I've watched the Lyme doc "Under Our Skin," as well as a number of other videos and have read a bit about the political situation.
Avatar universal
So I was just tested again for Lyme, and my results are negative.  The test result shows two categories with the following results:

Lyme IgG/IgM Ab     <0.91
Lyme Disease Ab, Quant, IgM     <0.80

It notes: IgM levels may peak at 3-6 weeks post infection, then gradually decline.

Because of the similarity in neurological symptoms, and because it's the one STD I don't think I've ever been tested for, I also was tested for syphilis (RPR, Rfx Qn RPR/Confirm TP), and that, too, was non-reactive/negative--which is a tremendous relief.  But it doesn't change any of the symptoms that wax and wane.

My next stop will be an ENT for the tinnitus/buzzing, occasional dizziness to severe vertigo, and this past weekend's extreme imbalance and vomiting.  Depending on how that goes, I'll then try to locate a Lyme specialist.
Avatar universal
I am unfamiliar with the testing you had done as many use Igenex labs which at present has one of the highest accuracy rates. That being said, my Igenex Western Blot came back Neg. I had pretty much all of the symptoms you have described, and yes they do come and go. Some even seem seasonal. Because some of the  +bands that are significant for Bb spirochete antibodies showed up on my tests, but more importantly because of my symptoms, a LLMD diagnosed me with Chronic Lyme disease. She told me that some of her sickest patients test Neg. There are several reasons for that, but one of the main ones being is that the spirochetes over time suppress one's immune system. So antibody formation stops. When you were originally treated for Lyme disease, you quite possibly did not receive treatment long enough, or perhaps you were put in to remission and something has brought it out again. I didn't know I had Lyme disease until I had surgery. After that the peripheral neuropathy and all the other symptoms flared.
I am happy to read that you are going to see a Lyme specialist. I think you will finally get the answers that you are looking for. Best of luck, please keep us posted!
Avatar universal
Were you also tested at IGeneX with a PCR test that looks for Lyme bacteria DNA?  To my understanding, that test is not based on measuring your immune system reaction (which as you note can be suppressed), but finding Lyme bacteria DNA in your blood.
Avatar universal
Two major developments yesterday.

1. I did keep my ENT specialist appointment.  Based on the pattern of hearing loss in my left ear and the vertigo I've experienced, I was diagnosed with Ménière's disease, which is when the inner ear canal holds too much fluid.  It can be disabling, as the two attacks I've had and the occasional intense vertigo I've had going back to around age 8 have been.  This is HUGE for me because it is an explanation, it is somewhat treatable, it's not something more serious like seizures, and FOR THE FIRST TIME in all these recent years, a lab test and a doctor did not refute my claim of what is happening with my body.  After doctors suggest continually that it might be all in your head, you start to think you might be delusional.   Never would I have thought that some kind of diagnosis like this would be such a huge relief.

2. Coincidentally, yesterday my mother found the photocopy she made of the prescription I was given for Lyme in 1997.  (I never knew, but she meticulously detailed all medical records!)  It was 100mg of doxycycline taken twice a day for 14 days.  That's it.  Given what I have read, the standard treatment nowadays is 100mg three times a day for 20-30 days for a new Lyme infection.  So now it feels like I really do need to look into this because I could have had this in my body for the last 20 years.

Regarding the tests I had, I really don't know.  I ordered the blood tests myself out of pocket because I feel like I need justification to visit any doctors, rather than the doctors ordering all the tests to screen me.  I know it's backward, but it is what it is.  The first neurologist I saw 4-5 years ago asked during the first consult if I had ever had Lyme and I told him that I didn't recall it, but my mother said I had it while I was in college.  His response was a weirdly aggressive/sarcastic "Oooookay, well that was a REALLY long time ago, wasn't it?"  I said, "you asked if I ever had it," and he said, "yeah, well if you were treated for it that long ago then you have nothing to worry about."  So it left me really insecure about even bringing it up, even when asked.

Anyway, I will paste the description of the blood lab test I ordered below.  I don't know anything about igenex or pcr or anything like that.  I do plan to see a Lyme doctor now to investigate further given the prescription my mom found.  It looks to me like I was under treated, but that's a better call for a doctor to make.

The Lyme blood test description:

Description: Lyme disease is an infection caused by the bite of an infected tick. The disease often begins as a rash. If you don't get treatment, the infection can cause serious nerve or heart problems as well as a disabling type of arthritis (pain and swelling in one or more joints caused by inflammation).

Combination of IgM and IgM/IgG testing has the potential to provide the earliest and the broadest time window for serological detection. This is the most comprehensive profile for Lyme disease testing, providing the broadest time window for detection and confirmation. Western blot confirmation is performed for positive results.

Includes: Index results for total antibodies and IgM positives; also includes Western blot analysis and result interpretation on positive.

This test is also known as Borrelia Antibodies

Estimated turnaround for results is 5 business days. If confirmation testing is required, the estimated time may be extended.
Avatar universal
My amazing mom also sent this link yesterday to a news story about how, as of 2013, Virginia doctors are required to disclose to patients that false negatives are common in Lyme testing.  It also states that 25% of local Lyme cases occur in Loudoun County, VA...where I spent most of the first 30 years of my life.  In reply to my mother's email, my sister wrote the she has a coworker who has Lyme and has flare ups regularly and she wrote "he always gets achy and brain fog. I always thought he was making it up..."  And then, "He always told me I have Lyme but I've tested negative several times. Even on the western blot(?) special test that's supposed to be more sensitive / accurate."  That's concerning because about 10 years ago, my sister suddenly developed an autoimmune disorder related to her thyroid, and she hasn't been able to carry a pregnancy to term--the first was still born and since then she has had at least 10 miscarriages.  Is there any relationship between Lyme and reproductive problems?  Just curious because no doctor has been able to tell her why she hasn't been successful, even with the autoimmune disorder--they just keep telling her to keep trying but she gave up because of the emotional and physical toll all the lost pregnancies have had on her.

http://www.nbcwashington.com/news/local/Virginia-to-Require-Doctors-to-Inform-Patients-About-Lyme-Disease-False-Negatives-199448441.html
1763947 tn?1334058919
I spent 35 years in Loudon County, VA and it's where I got bit. Lyme is an epidemic there.
Avatar universal
This is excellent progress -- with a special hurrah for your mother!

A few cautionary comments (remembering tho that I'm not medically trained):

-- Be sure your Lyme doc (whoever that may end up being) knows about all these developments, including Meniere's syndrome.  Lyme has a tendency to confuse the whole medical picture, and given how much Lyme messes with the immune system, I would assume that all your ailments are interacting with or affected by Lyme unless a competent doc declares otherwise.  Lyme is a disease that masquerades as many other ailments, and since MDs are taught in med school that Lyme is rare, hard to get and easy to cure, having a doc who understands Lyme and its co-infections and also has the whole array of your symptoms and history is critically important to getting a complete and accurate diagnosis, as well as appropriate treatment.

In other words:  don't compartmentalize.  You have no way of knowing at the present time whether all or some of your ailments and symptoms are connected or affecting each other.  In this age of specialized medicine, it is difficult NOT to compartmentalize, but a good Lyme doc knows not to focus in on just Lyme and ignore the rest.  It's a package ailment, courtesy Lyme and its evil little friends.

The doses of doxy you were given a while back (and whatever the medical profession is doling out now) are interesting data, but I would not rely wholly or solely on either one.  Doxy is not effective, from what I read, except in the earliest stages of Lyme, and you may have been bitten not only once some years ago and again recently, but at various times in between.  The ticks are so small and the rashes not always present that it is easy to be bitten and bitten again and again without knowing it.  In addition, since many of the 'Lyme' ticks (maybe half of them or more) also carry one or more separate other infections unrelated to Lyme itself that require separate testing and treatment, it takes a broadminded doc to know what to test for and how to treat each infection.

Bottom line:  don't close your data set yet.  Keep an open mind, because you well never really know when and how many times you were bitten.  Too many docs rely on seeing a tick and rash to make the diagnosis without considering how many times in addition each of us may have been bitten over and over.  I never saw a tick or had a rash, nor did others I know, but I sure had Lyme and babesia.

About the tests you had long ago, don't worry about them.  What matters is what your current docs do now.  If you have prior data, it's useful and give it to your doc for his/her consideration; if you don't have prior data, no big deal -- but don't make the error of assuming that the absence of evidence of historical events means that the events did not occur -- it just means you don't have the evidence.  (Have you heard the saying that 'Absence of evidence is not evidence of absence.'  So true.)  Here is where a wise and experienced doc is so critically important, to fill in the blanks to make sense out of the data and history that you do relate.  None of us has a perfect data set when we crawl into the doc's office, so just give the most complete data dump you can.  Before I went to my first LLMD appointment, I did a fairly detailed history and timeline of my ailments, as much as I could remember.  It was a place for the doc to start.  Work on it starting now, because if your brain fog was like mine, it takes a while and several efforts to dredge up the past events.  And my LLMD really appreciated the data -- too often if someone asked me a pointblank question, I would draw a blank and just say I didn't know ... but working on the history over time before seeing the Lyme doc for the first appointment really helped my dodgy memory fill in stuff as I reviewed and added to the history.  Don't obsess -- just do what you can do.  

You say:  "I ordered the blood tests myself out of pocket because I feel like I need justification to visit any doctors, rather than the doctors ordering all the tests to screen me.  I know it's backward, but it is what it is."  I think it was a perfectly rational thing to do.  

When I had my first indication that I had Lyme (through a positive test a doc blew off as not accurate), I straight away made a first appointment with a Lyme doc, and also made an appointment for a family member who had *not* been screened for Lyme or anything else -- we had both been all the same woodsy places and felt lousy (tho I was worse), so Lyme needed to be ruled out, given how indistinct the indications of infection can be.  

The Lyme doc humored us, and golly gee, we both were positive for Lyme and babesia.  Being overly cautious is not a bad thing, esp. when the risks of untreated ailments like Lyme are extremely high.  Untreated syphilis (which is first cousin to Lyme) is nothing anyone would shrug off, yet a possible infection of Lyme is routinely ignored by too many in the medical profession.  Bottom line:  ***Good for you*** for pursuing the possibilities.  

About the neuro you saw 4-5 years ago, a lot of his response is likely due to the fact that neuros as a group do not 'believe' in Lyme.  That's the kind of ignorance to watch out for.  You say, "So it left me really insecure about even bringing it up, even when asked."  Totally understandable, esp. when one actually does have Lyme and is on shaky ground physically, emotionally and mentally due to the direct and indirect effects of Lyme.  You did good.

You say, "I do plan to see a Lyme doctor now to investigate further given the prescription my mom found.  It looks to me like I was under treated, but that's a better call for a doctor to make."  I would *definitely* get a from-the-ground-up work up from a Lyme specialist, and be sure to relate your earlier undertreatment.  If the first doc you see now blows you off, go see another one till you are satisfied.

Regarding "The Lyme blood test description":

"Description: Lyme disease is an infection caused by the bite of an infected tick. The disease often begins as a rash. If you don't get treatment, the infection can cause serious nerve or heart problems as well as a disabling type of arthritis (pain and swelling in one or more joints caused by inflammation)."  This is accurate as far as it goes, to my understanding, BUT notice that they don't mention the endocrine aspects of Lyme:  mood, thought process, memory, and so on.

[see the rest of this message continued in the box below -- it exceeded the space limit]

Avatar universal
[continued from message above]

More from the quote in your post:  "Combination of IgM and IgM/IgG testing has the potential to provide the earliest and the broadest time window for serological detection. This is the most comprehensive profile for Lyme disease testing, providing the broadest time window for detection and confirmation. Western blot confirmation is performed for positive results."  

Western blot is one of the tests that rely on your *immune system reaction* to determine whether you have Lyme.  W.blot and its companion test, ELISA, are not bad tests, as mentioned in previous posts here -- but they often don't find true infections, because Lyme bacteria can and do suppress your immune system.  Suppressed immune system can mean a false negative test, because the test is measuring the reaction of your immune system.  That is why seeing an LLMD who uses not only W.blot/ELISA test ***but also PCR tests*** is important.  See previous emails on this site.  This situation is critical to understanding why the standard W.blot/ELISA tests are accurate when positive, but may well be INaccurate if negative.  

====
About the comment:  "[My coworker] always told me I have Lyme but I've tested negative several times. Even on the western blot(?) special test that's supposed to be more sensitive / accurate."  See above, concerning the fact that the Western blot and ELISA tests can indeed result in a false positive, because Lyme bacteria can and do suppress the immune system.  No immune system reaction?  False negative result in someone who actually has Lyme.  

You say, "about 10 years ago, my sister suddenly developed an autoimmune disorder related to her thyroid, and she hasn't been able to carry a pregnancy to term--the first was still born and since then she has had at least 10 miscarriages.  Is there any relationship between Lyme and reproductive problems?"  Your sister might consider consulting with an LLMD just to be sure.  I would do so.  (I just did a quick search on line for   ---   lyme miscarriage  ---   and got quite a few hits.)

Best wishes to you and to your sister -- Lyme is surely a misery, but one that can be beaten.  Keep us posted!
Avatar universal
New question re: Lyme doctors...or one in particular, anyway.

For those who have been to Lyme specialists, have you performed any research on them first?  I'm considering going to one doctor in particular, and patients appear to all give this doctor A/A+ reviews...however, two medical boards have censured the doctor for having treated Lyme.  So the question is: if Lyme MDs have been penalized by their boards, how do we know if the doctor is actually a competent doctor?  I'm torn on what to think because:

A) Medical boards exist to ensure that qualified and competent doctors do not engage in malpractice, etc.  
But...
B) If Lyme is a legitimate epidemic, as it appears by all information I can find to be, a physician who treats patients against the board's wishes could well be a valiant professional who is heeding his Hippocratic oath.

But how would any patient know which case applies for any given doctor?
Avatar universal
Welcome to the ongoing war between 'traditional' medicine and progressive Lyme docs.

I haven't done deep research on this, but my understand is that some states (like California, where I am) allow MDs to have 'freedom of conscience' in how to treat patients -- meaning:  a doc who has gotten through med school and hasn't lost his/her license due to proven malpractice is okay to practice however the doc thinks appropriate.  Other states put docs under the thumb of the medical 'establishment' and set up rules and directives about how thou shall and shall not diagnose and treat patients.  

Usually docs and the medical authorities in their respective states are on the same page about what works and what doesn't when diagnosing and treating patients, but there are times when 'received wisdom' from earlier generations of MDs runs contrary to current conditions, such as newly emerging diseases that the older docs never had to deal with.  The most significant example of this situation was AIDS a couple decades ago -- people were dying, and the docs were in total chaos.  The CDC put a doc (complete with white coat and stethoscope) in front of a bank of TV cameras and microphones to state flatly that if you were not gay or Haitian, you could not get AIDS.  Balderdash!  That doesn't even pass elementary logic.  The CDC was trying to quell panic, but they did a miserable job of it.

You ask:  "So the question is: if Lyme MDs have been penalized by their boards, how do we know if the doctor is actually a competent doctor?"  By finding more information about the doc (the internet is your friend) and reading the details of the censure action (if you're so inclined) and know that docs rely on received wisdom sometimes when they ought not to.

My own doc got cross ways with a medical board some years before I was treated by him, resulting in allegations that he had cooked the data on some research (not Lyme related, I don't think) some years before, and that was used as a pretext by docs who now don't like the stand my doc has taken on Lyme.  And we thought politics were practiced only in Washington DC.  Uh, no.  

Lyme is a messy situation, and it came along at a time when MDs generally were feeling like they had a handle on All Ailments Forever.  So docs who believe in received wisdom and that Mother Nature will never throw a curve ball are the ones who are out to lunch.

Your question is a good one, and I would do all the reading I could about the dispute your potential doc was involved in, access any public documentation about the dispute, read what message boards like this say, and anything else you can get your hands on.  Then maybe take an initial appointment with the doc and see how you feel then.  The doc may not be willing to discuss that particular past situation with you for reasons of confidentiality obligations (among whom, I don't know, just speculating here), and go from there.

And if this doc is an ILADS doc, there are lots of non-ILADS docs who think he's a quack from the get-go.  When I was under treatment for Lyme and babesia, I saw a few other unrelated docs and always stated honestly what meds I was taking and that it was for Lyme.  I got the fisheye from a couple of docs, but mainly they were respectful and even interested in learning more.  

I understand the need for docs to be skeptical, but it would be nice if they were universally skeptical, including with regard to Lyme-deniers.

So how does one know which way to go?  Read all you can about treatment and the doc (google is your friend), check any complaints filed with the medical board (probably available online at a state agency, but I'm not sure, since I've never done that), and go see the doc and see what feel you get.  If you want to, you can ask the doc about the prior claims, but s/he might not be able or willing to discuss it for legal reasons.  
Avatar universal
That sounds alot like lyme disease.
Avatar universal
Look on YELP, sometimes lyme doctors are on yelp forums, peoples opinions can give insight to what the docs are like.
Avatar universal
Just figured I'd send in an update, even though there isn't really one.

I emailed a Lyme specialist a few weeks ago with a thorough overview of my symptoms, asking if he thought it would be worth a consultation.  He hasn't written back.

In the meantime, I randomly got into a conversation about Lyme via Facebook w/ a friend of an acquaintance, and she said she was diagnosed w/ Meniere's disease before she was diagnosed with Lyme...more motivation for me to try to find a Lyme specialist.

Also, I've been taking a number of herbal supplements that supposedly work for Lyme for about a month now...and all of my joint pain is gone, totally.  Still have tinnitus, hearing loss (Meniere's) and some tingling and I'm dropping things a lot, still, but whatever.  Those are the least worrisome of all the issues I've had.  Periods of "remission" have been regular since I started having all these random symptoms five years ago, but I am nevertheless hopeful and will continue to take these supplements (I'll list below.) for as long as I am feeling better.

Finally, I discovered a page on a website called Medscape (http://emedicine.medscape.com/article/330178-clinical) that includes more specific and detailed info about stages/phases of Lyme, and it connects even more dots for me.  I says that phase I can include conjunctivitis--and I had completely forgotten that I had inexplicable recurring pink eye for about 18 months in my early 20s; it eventually just stopped happening.  Around the same time, I had real trouble catching my breath and felt like I was having heart palpitations...the doctor didn't do any tests but told me it was anxiety and put me on Zoloft (which didn't help).  That eventually subsided, as well, and then a couple of years later I started getting blurred vision on and off, peripheral neuropathy pains, confusion, etc...those are the symptoms that really got my attention.  I never connected conjunctivitis or the asthma I had to any other issues, I guess because they seemed like totally different physiological problems than the ones that seemed to be neurological and cognitive.

Anyway.  My sister has a friend who has been dealing w/ Lyme for years and she gave me the name of his specialist...about an hour away from me, but I'm going to look into making an appointment.

That's all.  Just checking back in in case anyone who is looking for answers the way I've been doing for years might discover this one day and begin to connect dots sooner than I've done.
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