Lyme without classic symptoms?

Hello online Lyme world! after 4 months of something weird going on, I found this site and am looking to all of you experts for advice.

I have had panels and panels of blood tests thyroid/STD/liver/autoimmune/CBC/metab panels...etc, abdominal CT scan, MRI of Brain, Endoscopy, colonoscopy, 2 abdominal ultrasounds, 2 months off work, everything is normal.

I don't feel normal though!

For the last 4 months:
*coldness in eyes/eyelids
*coldness in forehead, worse with exercise/low body temperature <---VERY bothersome, i get REALLY cold, even to the the touch, in my eyes/forehead head area with any aerobic exercise so I can't really go play too much (docs have no explanation) :(
Starting 2 months ago:
*left eye and full body twitching 24/7
*over sensitivity to sound in left ear
*itchy eyes

4 months ago I did have an insect bite on thigh, and 3 small bites on ankle without rash (from Austin, TX or New Orleans)
2 months ago I had a adult black legged deer tick on my calf in Birmingham, AL (black with red but) there was a small red mark where she was, but no blood and she was not attached/engorged, and I am absolutely certain she was not there for longer than an hour or 2.

How long should I continue the "wait and see" approach? is Lyme likely?
Is it possible to have these neurological Lyme symptoms, without having the joint pain/rashes/fevers/night sweats...etc?
Should I be thinking lyme and consider testing through an LLMD?

What do you all think?

[JackieCalifornia]

Greetings.  Well, if I were in your situation, I'd find a Lyme specialist for a work up.  I'd take all my previous test results and a written one page summary of my symptoms and medical history ... since my memory is pretty much shot sometimes.  Even if the doc doesn't want to read the summary, you can use it to refer to while you tell him/her what's up, and then s/he can put it in your file.  Lyme docs tend to understand when somebody's memory isn't working too well ... yours may or may not be.  Everybody's different.

I wouldn't get too hung up on the tick incidents not being exactly the right shape red mark or how long attached.  (Do you ever hear medical people say that you don't need to worry about getting the flu unless you were within exactly X inches from someone with the flu for exactly 15 seconds or longer?  No.  This 'how long attached' the tick was strikes me as similarly dense.)  Also you could have gotten bitten another time and never seen the tick or had a rash ... happens to a lot of us.

It's your physical symptoms that count, and a history of being exposed to ticks or having possible or verified tick bites helps, as do test results.  But the tests have to be the right ones, interpreted by a doc up to date on Lyme .... which many docs are not.

The tests you had run are good to rule out other stuff, but may not rule out a diagnosis of Lyme.  It's like giving you a strep throat swab test and telling you you're okay, without bothering to look at the festering sore on your foot.  No correlation.

The Lyme tests are not awfully accurate, but they are useful in the hands of a doc who can read them in light of your physical symptoms and history.  That means an LLMD.  Also you may have other diseases carried by the same ticks that carry Lyme, and that takes different tests and different treatment.

As to your symptoms, everyone is different, both in what symptoms they get and in how the symptoms change over time.  That's why an experienced LLMD is needed.  I know someone with Lyme who has a lot of physical symptoms that I don't have, but they have no neuro symptoms.  I have neuro symptoms sometimes, but little joint trouble and intermittent muscle involvement.  I also know someone who was simply a little tired all the time and found out by chance about having Lyme and a coinfection.  I personally never had a rash or a tick the first time I got Lyme and babesiosis, but had terrible fatigue, brain fog and body pain.  The second time I got Lyme and Ehrlichiosis, I found the tick, but it wasn't a tiny deer tick, it was a big dog tick stuck in the back of my leg for a week or more, and I had a terrible headache, bloodshot eyes, itching all over, pinpoint [petechial] bruising, and other symptoms.  Same person, different diseases, different symptoms.

About the coldness, Lyme bacteria have a little trick of affecting the endocrine system, including lower body temp, perhaps by interfering with thyroid function. My body temp was constantly 95 to 96 deg for a long time.  The bugs like it chilly inside.

The muscle cramps might be caused by low magnesium levels, so I read.  I take magnesium supplements, anything ending in "-ate", like magnesium malate, orotate, etc.  But see a Lyme doc as soon as you can.  Don't give up -- you know you're sick, and there's gotta be someone who can help you.  I went through 20+ docs before getting a diagnosis, and that's not uncommon.  

Let us know how you do.  If you need help finding an LLMD, try referrals from:

ilads [dot] org (this is the main organization for Lyme docs and has good info under 'About Lyme'/Diagnostic Hints and Treatment Guidelines by Dr Burrascano.

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

     and if you're in Texas:
standupforlyme [dot] org (I think this is a Texas-oriented website)
txlda [dot] org  (txlda I think is short for Texas lyme disease association)

Best wishes and let us know how you do, okay?

[Taaahoe]

Thanks for replying, I'm going to ask for a Western Blot tomorrow at my PCP...Will that help a little? at least show which bands are reactive? There isn't an LLMD anywhere near here who takes my insurance so that makes it a little tricky...will the Western Blot show the same thing as an IGENEX test? not positive or negative, but the same bands? how long does a Western Blot take to get results?

[JackieCalifornia]

Western Blot and another test called ELISA are often given together, because one has a high false negative rate and the other has a high false positive rate, and between them give a fair guess as to whether you have Lyme.  Igenex can run these tests; other labs like LabCorp can too, but I understand that Igenex gives specific readings instead of a general yes/no answer -- like getting your temperature taken and being told that your temp is 101 degrees specifically versus being told 'you have a fever' without any idea of how much of a fever -- Igenex gives the specifics that help an LLMD better evaluate your symptoms against the tests.  I have heard that other labs just give a yes/no, but not sure, since my LLMD uses Igenex.

Igenex also offers a PCR test that looks for little bits of the bacteria DNA, a whole different kind of test than Western blot and ELISA.

The Igenex [dot] com website has been upgraded recently and has useful information on the tests available and other data.  Check it out.

To answer your specific question 'will the Western Blot show the same thing as an IGENEX test?' -- Igenex is the lab, not a specific test.  Western blot and ELISA can be run at other labs like LabCorp and others, but LLMDs sometimes prefer Igenex and it also offers tests that other labs don't.  

The test results usually take a couple of weeks, as I recall.  Not immediate.

Many LLMDs don't take insurance, but your insurance co may reimburse you at least partially for what you pay.  Insurance can be the least of your worries if you are sick enough.  If you don't have a doc who can properly interpret the test results and are willing to prescribe the necessary meds, the best tests in the world won't do you much good.  

Sorry to be a downer, but sometimes there aren't any shortcuts, and a lot of docs just don't understand Lyme and won't know how to read the tests or your symptoms.  May I quote you:  "I have had panels and panels of blood tests thyroid/STD/liver/autoimmune/CBC/metab panels...etc, abdominal CT scan, MRI of Brain, Endoscopy, colonoscopy, 2 abdominal ultrasounds, 2 months off work, everything is normal."

These docs may not know what to make of even a positive Lyme test, and if they believe the test, they well treat with the usual couple of weeks of antibiotics and then pronounce you cured whether you are or not.  So keep your eye on the ball:  your health is what counts.  **I'm not medically trained; these are simply my personal opinions based on my personal experience and reading.**

We've all been where you are, so I can appreciate your situation.  Best wishes --

[JackieCalifornia]

And PS I've been told not to have blood draws done on Fridays, because then the blood samples sit around all weekend and get strange somehow.  I try to go earlier in the week just to be sure.

[JackieCalifornia]

and PPS  --  remember that the tests mentioned above do NOT detect coinfections that the Lyme ticks can bring, sometimes in up to half of all Lyme patients, so I read.  In other words, it's not a rare occurrence.

Getting tested for Lyme may get you only half the story, and the treatments need to take into account what other diseases you might have, both in which meds and in which order to attack the diseases.  

[wonko]

Lots of folks with Lyme fail to show the classic symptoms, or to even recall a tick bite.  I'm in that group:  I'm an avid indoorswoman, don't recall a bite or any rash, and the first symptoms that noticed were neurological, not the classic arthritic problems.

It's been covered that the tests are not that reliable.  A big factor on your side at this point is that your illness, whatever it is, is only a few months in.  The tests for Lyme look for antibodies, not for the bacteria directly.  Many Lyme doctors speculate that the reason Lyme is tough to diagnose in late-stage cases is that eventually, your body kinda quits fighting effectively, and less antibodies are produced.  Therefore, people very sick from Lyme can have negative tests!  

Lots of LLMD's go with Igenex because they provide a detailed report.  Some labs will only report "positive" or "negative" by CDC standards, which were developed to *monitor* known cases of Lyme, not to diagnose it!  (So the criteria for positive are arguably way too high, requiring many "bands" to show up on the test.)  Igenex will report all of the findings, even if only one band is present.  The test itself is subjective, bands can show up clearly if there is a lot of antibody or faintly if there is a lesser amount.  Igenex reports for each band on a scale from negative (-) up to positive (which itself is over a range from + to ++++), and also reports weak positives as indicative (IND).  

However, since Igenex is a specialty lab, most doctors will order testing through standard labs like Labcorp or Quest.  If that's what you can get through your PCP, it's still a good start, but keep Igenex testing in mind, especially if your doctors continue to not be able to diagnose your condition.

Hopefully, if Lyme is the culprit in your case, the testing will show it, from any lab, but do be warned that a negative test for Lyme doesn't mean you don't have it, and as noted above ticks carry other infections that don't react to the Lyme western blot, so you could still be sick from a tick even if the Lyme bacteria isn't the offending agent.

I know this can all sound a bit "out there" at first, in our culture we expect to go to the doctor, get diagnosed, and be offered a treatment.  However with Lyme the situation is more complicated, and the medical community can't agree on definitions, testing, diagnosis, or treatment of Lyme.  And as noted, very few LLMD's participate in insurance, because they treat outside of popular guidelines and in some cases, are actually risking their licenses to take on patients with chronic Lyme, which mainstream medicine denies to even exist.  

Don't let all of the mess and controversy stop you from pursuing what matters most here-your health.  Do continue to work with your standard doctors to rule out other conditions, and don't be afraid to work "in parallel," pursuing an LLMD at the same time.  If your illness is caused by Lyme or other tick born infection, the sooner you treat the more likely it is that you'll have a fast and full recovery.  One thing that all doctors agree upon about Lyme is that if it goes a long time untreated, the outlook worsens.  

Good luck & take care.

[Taaahoe]

Thanks for all the info...I've managed to do quite a bit of research thus far. Today my PCP ordered a "Lyme Antibody test" I am assuming this is the ELISA...he said if this is negative then they don't need to do any follow up tests.

Assuming it's been 2-4 months since infection, would a negative antibody test make Lyme unlikely?

If it does come back negative, should I ask for a Western Blot anyways?

I also read a little about Samento and the Cowden protocols...I ordered a bottle to try out. Even if I am affected...it will most likely be awhile before I get to see an LLMD and get antibiotics so I figure it can't hurt to experiment some natural stuff.

[Taaahoe]

PS

the test is through quest and i am going to take your advice and wait untill Monday for my blood draw :)

[JackieCalifornia]

Unfortunately the tests are not all that accurate.  The Western blot and the ELISA balance each other somewhat, in that one has a high level of false positives and the other a high level of false negatives, and between the two an experienced doc can have an idea, in light of your history and symptoms, whether you likely have Lyme.

I don't know how Quest gives its results, but if it's binary yes/no, that's not as useful as the - to +++++ range that Wonko describes above.  NonLLMDs aren't big on using IGeneX, tho.

I'm not clear on Samento vs Cats Claw.  I am taking the latter with good effect, but there are those who swear that Samento is better.  I don't understand the science behind the claim, however.

Best wishes!  Let us know how you do.

[22dreams]

Personally, I would not focus on the tests that much at all. The most important thing if you suspect lyme is to find a LLMD.

I've never tested positive for lyme according to IgeneX, or other labs Western blot. or positive with the CDC surveillance criteria intended for demographic reporting, not for diagnosis, that SO many doctors erroneously look to as a gold standard for lyme diagnosis. There is no doubt I was bitten by a tick and no doubt I had lyme even prior to seeing the tick.

My sister whose case progressed severely DIDN'T test positive the worse she got. Never had a rash. She did have a positive test 1-1/2 years prior. By some miracle, a visiting Md from NYC sent out for IgeneX when her std western blot returned with a negative. The Md had had a friend or relative with lyme and just *knew* she had it based on the clinical presentation.

Antibody tests are unreliable because so much is unknown about the behavior of the lyme bacterium & the complexity of our immune system's reaction to it (does it cloak itself and hide from the immune system? most LLMDs say Yes. is the shape of the bacteria similar to the shape of other cells in our body and create and autoimmune response? et al). Even with the PCR tests where they look for the presence of the lyme bacteria(Bb) is problematic, because Bb does not favor the bloodstream but prefers to make its way quickly to other systems in the body. Like the Central Nervous System, heart, joints, anywhere and everywhere. We are each snowflakes with our own unique genetic makeup, environmental exposures, and how far the disease has progressed in us may be an unknown, without severe, consistent symptoms to put a finger on.

Like wonko I was an avid indoorswoman and also live in concrete jungle. Given my limited exposure to nature, even grass over the years, I was the least-likely candidate. But one day, when I came home from work to my urban condo, an engorged tick fell off of me onto the kitchen counter. I hadn't been to the suburbs, hadn't been to the beaches (i.e. Cape Cod, Mass), woods or mountains. No pets. I found several ticks and nymphs in my house that year. Figured out it from the overgrowth (bushes essentially) overhanging the stone wall lining the sidewalks in front of my complex.

Anyway, 6 weeks later, the neurological symptoms ensued. I never had a noticeable rash from that Known tick bite. Although a doctor noticed a "sandpaper" spot on my back. Disruption the same color as my skin. No joint involvement to speak of. Which lead me to surmise that the unexplained increasing fatigue & random, sporadic weirdness over the years that I rationalized away (or my PCP had) or forgot about because of their brevity, could easily have been attributed to unknown bites by infected ticks.

So would a non-LLMD look at my case and say that I have lyme? No. Would probably think that I was suffering from psychosomatic issues because of the "scare" of finding the bugs, if I found them at all. Because my sister already had lyme I could see an ignorant doctor having that notion---when actually I was thinking "what are the odds? right?" well it turns out that 80-100% of deer ticks carry lyme and/or co-infections. even the city ticks.

But, if we took all the supposed cases of "it's in your head" that would make hypochondria the number one illness in the country. what right does a non-psychiatric medical doctor have to make a psychiatric diagnosis anyway?

Personally, I wouldn't want a doctor looking at me and saying or thinking that it's all in my head. But that is FAR too common with lyme and other diseases and syndromes. Being invalidated is not good for one's health.

So to avoid the trauma of invalidation for what you are experiencing in your body: my advice is find a LLMD. They have the experience, they see it all the time and know it when they see it or don't see it. and then you can take it from there.

I did have an IgeneX western blot about 5 months after I found that tick. The delay was long to see a proper LLMD & over that time my symptoms worsened even though I was on lower-dose antibiotics from somewhat lyme-friendly PCP I found. Anyway, IgeneX came back with a couple lyme-specific bands with 1 or 2 "+"s or INDs. Not a line of ++++ for reactivity. I was Negative according to testing criteria..

before the results were even in my LLMD had started treating me based on my clinical symptoms and Exposure to ticks. but my LLMD was aware of the latest observations of other LLMDs she consulted with and research and the pattern they were seeing with these bands. so when she saw the IND or low-range positive on 2 specific bands it just backed up her clinical diagnosis. If I had been non-reactive across the board, she would not have retracted her diagnosis. Again: my sister at her worst was only positive on band 41 (can't remember if it was IgG or IgM) on Igenex Western Blot.

Although some people are easily reactive & test positive, from personal experience, I cannot emphasize enough that Tests are NOT a measure of the presence of the disease by any stretch of the imagination. the worse my sister got, the less reaction she had on the (IgeneX) western blot. She finally went on IV antibiotics. Several perfectly formed so-called "classic" bull's eye rashes emerged on her legs during treatment. Unmistakably text-book rash that she have never had - or perhaps just had never seen - before. Proof-positive of the presence of Bb. As others have stated, evaluation by a LLMD is needed not only for lyme but the cocktail of a dozen possible other bacterial and parasitic agents that ticks can carry.

One (different thought) given you mention that you are Cold in various ways: thyroid disease can be sub-clinical. Meaning the standard tests that are used to detect thyroid dysfunction, like lyme tests, do not accurately present a picture of what is going on in your body. Hashimoto's is common in lyme patients and people can have Normal-TSH but still have hashi's. and can still be hypothyroid or hyperthyroid for that matter.

If you Keep track of your body temperature--take it upon waking each morning and take it again at another point during the day--this can help a sav-vy Md determine possible thyroid and adrenal dysfunction. Check out the website Stop the Thyroid Madness for recommended lab tests. A LLMD or integrative Md is more likely to run these labs than a GP/PCP.

To make it easier, Temperature graphs are available for download and printing here: http://www.drrind.com/Default.aspx?PageID=1988524

I'll get off my testing soapbox now. Good luck on your journey. Report back on how things go.

[wonko]

Yes, your doc is following the standard two tier testing in which the western blot is done if & only if the screening test is positive.  Just realize that their is another school of thought which believes that method misses many cases.  My elisa was negative 3 or 4 times, then finally came back as "equivocal."

[wonko]

Oh, and having now read 22's post, I wanted to add that I too never had a clearly positive western blot.  Igenex found 1 Lyme-specific band, and the value was + (not ++++).  Other than that, I only had band 41, which does not correspond to a Lyme-specific antibody.  I also had a spinal tap while undiagnosed, and my spinal fluid tested negative for Lyme.  I would never have gotten Lyme treatment from a mainstream doctor, my PCP wouldn't even consider a one-week trial of doxycycline.

My LLMD thinks that my condition is more influenced by co-infections than by Lyme itself.  I've had the greatest response to antibiotics which target the co-infections.

I also appreciate the comment in the above post "So to avoid the trauma of invalidation for what you are experiencing in your body: my advice is find a LLMD."  I did feel invalidated when other doctors could not diagnose me, and went through a period of time when I blamed my illness/symptoms on myself.  During that time I put tremendous pressure on myself, continued to work full time and tried to deny/ignore my symptoms.  I was so glad when I finally got to an LLMD that I was taken seriously and could tell them everything that was going on and not feel vulnerable.  

[Taaahoe]

ok, drumroll please...ELISA test result says {NI}...

Western Blot: everything is "NONREACTIVE" except for IGG Band 58

what does this mean if anything?

if my symptoms are stable (not getting better or worse) for the past few months, should i still seek treatment and testing through an LLMD. I have an appointment in 3 weeks and am not sure if i wanna commit or not.

I know that our health is more important than $$$, lf I go to the LLMD i'm prob looking at thousands of dollars.

ahhhhhh, life is such a balancing act...thank you once again for all of you wonderful people and your input and time.

Taaahoe

[wonko]

Obviously, it is your choice how to proceed.

One option may be to try some natural antibacterials/antimicrobials and see if/how you respond.  Cat's claw (or Samento, they are related) are easy to obtain.  My LLMD had me take Samento for a few weeks prior to starting antibiotics, to help get my system ready, and I did notice the effects.  

There are other natural treatments, all of which currently slip my mind.  But if you are leaning towards a "wait and see" approach for now, as it sounds like you might, exploring some relatively inexpensive natural treatments may be a good option?

Good luck & keep us posted.

[JackieCalifornia]

In your shoes, I would keep that appointment with the LLMD.  Trying herbal supps in the meantime may help how you feel, the only downside of that is that it might obscure your symptoms when you see the LLMD.  The LLMD should be able to factor that in, but I don't know, not medically trained here.  Just be SURE to tell him/her that you are taking them and for how long and how you felt before you started taking them.  I sometimes don't want to tell docs that I'm taking herbs because the docs can get snotty about it, but they really do need to know.

I take Cats Claw and another immune-support herb (astragalus) but I believe that they only suppress my symptoms and do not effect a cure.  I will go back on antibiotics as soon as I can.

[anonymous680]

Hello, I lived in Tahoe when I got sick. I got a tick bite, and it went undiagnosed for 9 or 10 months. I had inactive Rocky Mountain Spotted Fever, Lyme, and Babesiosis. I was very sick, but doctors would dismiss my case as psychological as standard lab tests showed nothing significant.

While I do have Lyme Disease (as evident under dark field microscopy and lab tests), you may have CFS instead of Lyme. Perhaps you have both CFS and Lyme. I have both, and researchers are finding out that's not uncommon by any means to test positive for both.

In fact, the first major CFS outbreak was in Incline Village, NV in 1985. It's been previously said by both CFS and Lyme researchers that many cases chronic Lyme and CFS are indistinguishable, which makes me think that Lyme may activate the newly discovered CFS retrovirus called XMRV and I think XMRV may be what is perpetuating illness in people with chronic Lyme Disease. We really don't know yet since XMRV was discovered this year.

In fact, using more accurate specialized testing generally not available to the public, CFS researchers found out that around 30% of people with CFS test positive for Lyme. It is believed that certain viruses and other bacteria may activate the infection as well.

Standard testing through LabCorp and Quest is not adequate. Your ELISA is likely to come back negative unless you were exposed to the original strains in the east of the United States AND you have a good immune response. The Western Blot is a better test.

If you have CFS (which is what I think makes Lyme chronic), Reno is the hub of all the research right now. The Whittemore Peterson Institute just opened their new facility, and if I remember right, I think they said they are going to start seeing patients real soon for chronic neuro-immune diseases (that includes Lyme). There is a test right now for XMRV called VIP Dx. The lab is located at UNR.

While you can get tested, tests are not covered by insurance yet, and as of now, there is no treatment for XMRV (since research is still pouring in). Treatment will likely start with certain HIV/AIDS drugs, and while I don't advocate treatment right now, there are some currently being treated with them.

XMRV is highly prevalent in the normal population (up to 10% I believe), but it only seems to activate upon requiring certain viral or bacterial infections that trigger a lot of stress.

I found that I felt better when I got out of the Truckee/Tahoe/Reno Basin and in lower altitude. I don't know why.

If you are in the Tahoe, I can recommend doctors and tell you doctors to avoid all the way from Truckee to Incline Village. I've probably seen them all, and the doctor that suspected it was Lyme used proper labs. I came back positive.

Send me a message if you want.

[JackieCalifornia]

Hi -- this is very interesting information -- I've seen mentions of XMRV but not looked into it.  Verrrry interesting.  

If you read more on it, would you post about it here?  

Hope you're doing all right!  Thanks  J.

[Taaahoe]

wow, thanks for all of the info...the local info is very interesting and i feel quite fortunate to be right in the heart of all of this new research...had no idea

Wonko-I think I may continue experimenting with some natural/herbal remedies as well as immune boosting/detox ideas. i just got a bottle of Samento that i haven't opened yet.

Jackie- I still have a week to decide to cancel or not...but i may end up checking out the LLMD and at least hearing their opinion and see what the more sensitive tests say. probably could get that far for $1-2k and then decide if i want to go anti bioX route or even need to from there.

kday, glad you found me...i am sending you a message!

i will keep yall posted on how things go...BIG THANK YOU AGAIN

tahhhoe

[anonymous680]

After XMRV was discovered and a kit was available VIP Dx, the lab was also offering Lyme testing. They obviously saw the connection between XMRV and Lyme.

Now the lab's focus is just XMRV testing after moving to the University of Nevada Reno.

Unless you have money to spend, I don't think it's worth getting tested until more is known and the kit is more developed.

The serology test is $249 and the PCR is $450. If you get both, the discounted price is $549.

Again, there is no recommended treatment for XMRV yet, so I would wait.

I am a believer that it's possible to reverse the expression of XMRV by addressing the infections. I say this because those with chronic Lyme can recover and Joe Burrascano is now saying XMRV related viruses are prevalent possibly 100% of chronic Lyme patients.

You can read the notes from the recent ILADS conference here for yourself:
http://betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways

[JackieCalifornia]

Thanks, kday!  The notes are very interesting, and I'll be doing more reading on it all.  

Much appreciated.  Hope you're doing all right --

[ree4tu1]

Thank you Jackie and Wonko...You have such accurate knowlegde about the disease and I am sooo thankful that you are helping everyone!  To anawer the above question, an abnormal CT Scan could indicate other things than lyme.  I would also investigate that a little further. Your symptoms don't sound typical of Lyme to me, but it doesn't hurt to be examined.

[ree4tu1]

I forgot to mention, have you had any tests for your pituitary gland?  Benign tumors on this gland may cause some problems you are having.  Was your MRI of the brain with contrast?  This makes a big diffference.  Good luck to you, but these symptoms do not sound typical of Lyme to me.