Should I get tested?

[bwm441]

Hi everyone,

I have been having sensory issues for roughly 6 weeks now.
Symptoms include:
-Numbness, tingling in hands and feet, sometimes forearms and legs.
-Light sensitivity
-sensation of pinched elbows
-stiffness in neck, shoulders.

I have had an MRI, EMG, tons of blood work done, and everything comes back normal except for a high TSH level.
(doc gave me meds thinking- why not treat hypo thyroid- won't hurt)

My neurologist didn't test for Lyme since to my knowledge I haven't been bitten. However, I do hike through the woods and do have dogs.

What are the chances of contracting Lyme living in Ohio? What are the chances of having Lyme and not having a fever and rash?

Thoughts anyone?

[bwm441]

My 2-tier lyme test came back negative....
Spinal scheduled for July 6th.

Numbness is gone.
Still have sporadic tingling/burning/pinching elbows.

[lymiebrooke]

I had no problems with the spinal tap... but there is always that risk. I had lyme disease in every part of my body, and the spinal didn't pick it up. If I were you though just to rule out all possibilities and for piece of mind, I would go ahead with the spinal tap too. At least then they can rule out the things that you don't have... even if you are neg. for lyme though in that... don't stop there. If I would have stopped there I probably wouldn't be walking right now.

To answer your question, I guess it's pretty common for lymies to have brain fog/ dizzyness, etc... So I have a lot of hope that it will get better:)

[JackieCalifornia]

Can't disagree with your approach -- I too am a believer in pressing ahead on all fronts.  Knowing that I have Lyme+, however, has narrowed my focus, but that is just me.

The worst I have heard about a spinal tap is the possibility of a bad headache, but it's different in everyone.

Go for it!  Let us know how you do.

[bwm441]

Thank you all again for your support and comments.
It is so helpful.

I guess I mentally decided to go ahead with the Spinal because yet another symptom appeared this week. I worked out Tuesday night (I am VERY active- run, lift, aerobics, kick-boxing) and Wednesday morning I experienced a burning sensation down my back, butt, and my upper legs. It lastly for about 45 minutes. The weird thing- walking makes me feel better!? It happened again Thurs. Would that be the case for MS?

Then today- (since I am taking it 'easy') I hiked/walked my dog almost 5 miles. I have the endurance to do that- however, it seems anything highly aerobic cases me 'grief' the next day.

Lymiebrooke- thanks for your post-
Like I mentioned- I am really scared about the spinal. But, don't know what else to do at this point. I hate to let ANYTHING go unnoticed and let it get worse. Sorry to hear you are experiencing brain fog. Do the doctors think you will fully recover?

[lymiebrooke]

Sorry, I haven't posted for a little while... I have this really weird brain fog thing going on which is a new symtom in addition to my neurological tingling/ muscle weakness, etc... I just wanted to comment on the spinal tap. Again, I have a somewhat similar story to yours. Just to let you know, I have a serious case of lyme with every single co-infection, but both my western blot and my spinal tap both came back neg. for lyme back in Jan/Feb at our reg. clinic.... I had my spinal tap in Feb because that was what we needed to do rule out MS/ etc... I had asked the neuro. at that time if they could also test for lyme in my spinal fluid, since I had so many neurological symptoms. We'll, long story short, I had no red flags in my spinal fluid and now 4 months later I'm sitting here with a bad case of lyme that wasn't caught way back in Jan.


While the spinal didn't help with the lyme diagnosis, it did allow me to cross off some other major diseases/disorders. I basically went to a LLMD because I had literally exhaused all other possibilities and gave a last ditch effort by going to see an LLMD... and sure enough that is the doc. who is literally saving my life! Without that spinal though, I don't think I would have ever felt like some of the other big neurological things could be ruled out with certainty. So even though the tests for lyme might stink in spinal fluid and blood when done in the mainstream med. facilities, at least the spinal tap would give you some piece of mind ruling out other major things. It's not something to take lightly though, as I'm sure you know... like anything there can be complications.I still can't believe mine is lyme... and it was literally my last hope!

Hope to post on here sooner next time:)

[JackieCalifornia]

And a quick PS:  if your neuro wants to do the spinal tap for other reasons, that's a different ballgame.  But if it's to rule out Lyme, then I'd question that motivation, but he's the MD, not me.  (I keep my shoes under the bed, not in the closet.)

[JackieCalifornia]

I don't know about truthaboutlymedisease ... it's not a website I've spent much time at.

However I have read in other places that spinal fluid (what is withdrawn when a tap is done) is *not* necessarily helpful in a Lyme diagnosis.  Neurologists are not keen on the Lyme concept at all.  

Here is a brief quote from ILADS [dot] org, from a long article entitled "Evaluation of Antibiotic Treatment in Patients with Persistent Symptoms of Lyme Disease",
by Phillips S, Bransfield R, Sherr V, Brand S, Smith H, Dickson K, and Stricker R.
An ILADS Position Paper - April, 2003 (citations omitted; comments in [square brackets] are mine):

"Just as seronegative [that is, blood tests that are negative for Lyme disease] but active Lyme disease has been documented in the scientific literature, so has active central nervous system (CNS) infection despite negative spinal fluid tests for B. burgdorferi [which is the bacterium that causes Lyme disease]. Negative results are often obtained on cerebrospinal fluid (CSF) of known Lyme patients, including normal cell count and chemistry evaluations and absent Lyme antibody titers [meaning there is no indication of the immune system reacting to the presence of Lyme disease]. Consequently the absence of antibodies against B. burgdorferi in CSF cannot be relied on to rule out CNS infection with this organism. Given the foregoing, the diagnosis of B. burgdorferi infection should be made primarily on clinical grounds, with current serologies playing only supportive roles."

I personally never had a spinal tap, but had positive blood tests and clinical symptoms pointing to Lyme. I then responded to antibiotic treatment.  That's not an uncommon progression for many of us here.

Now for my editorial comment:  your neurologist, if he's true to the current standards in the neuro medical community, will rely on a negative spinal tap to prove that you don't have Lyme.  I see that like stating that if my sneakers are not in the closet, then that means I don't own sneakers -- never mind that I keep my shoes under the bed and not in the closet.

Personally, and this is just me, I don't want a spinal tap and am glad it was never suggested to me.  You can always get it later.  But it's of course up to you, and I'm not medically trained.

Good for you for being persistent and asking questions.  You gotta be!  Hang in there. Keep us posted, eh?  And be SURE to get copies of the blood tests for your own files and for your future MDs.

[bwm441]

Alright- back for more info.

Got my blood drawn yesterday for the 2-tier generic test.

My neuro. mentioned getting a spinal tap as another test to rule out MS. (even though my physical exam, Contrast brain/neck MRI, VEP, EMG, were normal).

I read that a spinal tap would also be an effective test for Lyme (vs. the generic blood test) on the truthaboutlymedisease website.

I am considering killing two 'birds' with one stone and scheduling the spinal tap?
Thoughts?
I am totally petrified over this procedure but need answers.

[JackieCalifornia]

Good for you for being pro-active!  

Do call and get in to the see the LLMD -- it can indeed take a while for new patients esp, and this is 'Lyme season.'

You're doing everything I would in your situation.

[bwm441]

Well going tomorrow for the 2 tier test.
Doctor didn't seem to acknowledge the other....IgeneX.
(like you mentioned).
Well at least I will get this process started...in some degree.
Will call other doctor soon.

[JackieCalifornia]

The IGeneX test comes back with little hashmarks showing different 'bands' that lit up on the test, all the way from no reaction on the band up through +, ++, +++, and ++++.  Each band means something different.  The website at truthaboutlymedisease [dot] come has a list of what each band signifies.  I printed it out and taped it to my wall for easy reference.

I hear what you are saying about getting the test while you wait for the other appointment.  Sounds like something I would do.  :)

[bwm441]

Well my hope is that I can at least get the labs done and get it sent to Igenx- as far as interpretation goes, I can try and schedule with the other doctor for a second opinion and/or post results on here to see if anyone could help.

[JackieCalifornia]

The only problem is:  even if your doc orders the Igenex tests, his interpretation of them may well be quite different from what an LLMD would say.  

Others here can explain better than I can, but there are real differences between the usual Western blot/ELISA tests and the IGeneX tests.  The standard tests vs Igenex tests are not like comparing a Ford and a Chevy:  it's more like comparing a car and a tractor.  I can drive a Ford or a Chevy, and I get that a tractor moves forward and back like a car does, but I don't have any idea how to OPERATE a tractor.  It's a whole different animal.

Yes, you go to a regular lab for the blood draw, and they ship the specimen to IGeneX in California.  I've been told not to get the blood drawn on a Friday because it just sits around all weekend and isn't as useful in the test.  I don't know that that is true, but it makes sense to me at some primitive level.

You should check with the lab (like LabCorp kind of place) to be sure they have whatever kits or test tubes they need to ship to Igenex.  I always use the same LabCorp office here, because they always have a big supply of the right kits/tubes -- I went to different LabCorp one day and they didn't have the kits/tubes.  They can get them, but an MD who orders IGeneX tests may know which lab outlets are user friendly that way.

[bwm441]

Thanks again. I have a plan of attack!

So if my MD is willing to let me get the Igenex test- then how does it work exactly? Do I go to the normal lab to have my blood drawn and they send it to them....? Might sound like a silly question, just checking.
I can be pretty convincing- so I plan on talking my doc into the better test. (we will see)

[JackieCalifornia]

It won't hurt to get the generic tests done.  The question is how useful they will be and how they will be interpreted.  It's a judgment call, and I'm a believer in pursuing all options, so why not.  Ask your doc.

Many people with Lyme have coinfections that do not respond to the same abx as Lyme.  So there's no one size fits all.  But if your GP tests you and does a diagnosis of Lyme and prescribes abx, then again, why not.  Again, ask your doc.

Some Lyme patients don't sleep well.  Depends on the person, the season, and the coinfections.  It doesn't affect any two people the same way, which is part of what makes diagnosis so difficult.

Insurance cos. generally aren't as cranky about Igenex as MDs are, but it will of course depend on your coverage.  I don't think Igenex has been blackballed by insurance companies generally, tho.  Igenex will NOT bill your insurance, based on my experience.  You pay them, then you file a claim with your insurance co.  Many Lyme MDs work the same way.  Igenex costs depend on what tests are ordered.  In my experience, a few hundred dollars for several tests.  Depends on what is ordered.

[bwm441]

One more Q: does insurance usually cover the Ignex lab work? If not, what are the approx. cost?

[bwm441]

ok, a few more questions based off more research.

Went to the ILADS website and found a doctor within an hour away. ASSUMING it will take time to get in to see this doctor...would it make sense to get into my Primary Care doc and get the 'generic' tests done as early as this week (with the 'generic' interpretation?)

Also, if the early stages of Lyme are treated with common antibiotics, then why not prescribe them and see what happens? I mean doesn't every physician do that during cold/flu season anyway?

Are symptoms worse typically at night while sleeping? That has been the most consistent part about my symptoms. Sleeping prompts tingling, swelling, occasional numbness.

btw- I also have noticed I have a low body temp....also linked to hypo.

[bwm441]

Thanks again for the info.
I feel lucky to have your input!

[JackieCalifornia]

I agree with Wonko.  

We (the human race) are taught to believe in the rationality of science and the scientific method, but given that scientists are human, problems do creep in.  All tests are not created equal, and none of them is yes/no:  all require interpretation based on your symptoms, and a non-ILADS-oriented MD cannot or will not do that with an open mind.

Thus getting non-IGenex tests from a non-LLMD are less likely produce useful data, and non-LLMDs do not generally use Igenex tests and indeed sneer at them all too often.  The comments and attitude I have gotten from non-LLMDs are:  (1) LLMDs are quacks; (2) Igenex is a scam; and (3) I, the patient, am a fool for believing either an LLMD or Igenex.

Therefore if you ask your primary care doc to order the tests, it is likely (tho not certain of course, since there are enlightened MDs out there, and they don't generally advertise themselves as such) that s/he would order non-Igenex tests and interpret them under IDSA guidelines.  If s/he did order Igenex tests, s/he may not know how to interpret them under ILADS approaches or how to structure a treatment plan for you.

Long explanation, but the point that ILADS-oriented MDs and non-ILADS types just don't speak the same language and you can't generally make a crossover from one type to the other.  Someday when all this is straightened out, it will be possible, but right now we are where the AIDS community was in the early 1980s when the official position of the CDC and the medical community was that if you weren't Haitian or gay, you couldn't get AIDS.  Yeah, right.

Long story short, I agree with Wonko's comments.

[wonko]

PS-Most primary care docs will follow the IDSA-recommended 2-tier testing, which is a screening test followed by a Western blot.  They will only issue the W. blot if the screen is positive.  Standard labs that carry out the Western blot do not test for all bands and provide only limited reporting.  Most LLMD's order testing through Igenex labs, which test for more bands and provide a detailed report.  It's up to you who you see to get tested, but realize that the testing is not very reliable, and varies both in reporting and interpretation based on the lab and ordering physician.

[wonko]

My 4 neuros were also skeptical that it was even feasible for my symptoms to be caused by Lyme, and I was also warned about false positives.  

But at the same time, none of them could really nail down what this was, they just kept upping my dose of gebapentin and telling me to repeat my MRI's every few months.

I once read "Don't take your Cadillac to a Ford dealer if you have Lyme disease," which is a sarcastic witicism summing up that if you want to be evaluated for Lyme, go to an LLMD.  Your symptoms are systemic and consistent with Lyme.  Treatment can be long & slow, and only gets harder the longer the delay to diagnosis.  So I'd keep that in mind, regardless of what the neuro says.  

As JackieCalifornia summarizes, the status of Lyme in the US is deplorable, and doctors are too busy disagreeing with each other to prioritize helping patients.

Good luck & take care.

[bwm441]

Thank you both for the feedback. I really appreciate the responses.

My neurologist seemed skeptical that it was even feasible for this to be caused by Lyme.
He also mentioned that many tests come back false positive? Do you know that to be true?

I have been getting copies of all my blood work, etc. I am learning to not trust doctors that much.

Is it ok to have my primary care doc order the test? Or do you recommend going straight to an ILADS member?

Thanks again for the support. I will keep you posted.

[JackieCalifornia]

Hi there, Ohio!  (I spent quite a few years there.)

Lyme is found in all 50 states and is the fastest spreading vector-borne disease (meaning carried by something like a tick or mosquito) in the US.  Woods + dogs = ticks.  Ticks --> Lyme and other diseases.

Many people don't ever see a rash (I didn't) and never see the tick that bit them (I did the second time because it was a big ole dog tick, but not the first tick.)  

Fever is not all that common in Lyme.  It's often the reverse, because the Lyme bacteria (Borrelia burgdorferi, or Bb) like it cool inside, so they hijack the neuro-endocrine system and Lyme patients often have a low body temp.  Mine is 96 or 97 deg. F. constantly, no matter what.  Part of that hijacking results in hypothyroidism; my MD has just given me meds for that but I haven't started them yet.  (I've had Lyme at least 4 years.)  So that fits with your symptoms (tho mind you I'm not medically trained.)

Neurologists are not trained to recognize Lyme outside very narrow perimeters that were developed for epidemiological tracking, which by its nature wants to track only true cases of a disease and sets the bar very high for qualifying as having Lyme.  Unfortunately practicing MDs tend to use that standard for diagnosis too, which is unfortunate, because Lyme presents in a wild variety of ways, not the same in any two people, and is often complicated by the symptoms of co-infections carried by the same ticks.  You need to be tested for coinfections too because the treatment is different than for Lyme for some of them.

There is a war going on in the medical community over Lyme.  Neuros and rheumatologists and infectious disease MDs for the most part do not like to diagnose Lyme, and the politics of it all have infected mainstream medicine with disregard for obviously ill patients.

The Infectious Disease Socy of America (IDSA) is the organization that sets up the Lyme diagnosis standards for so-called mainstream medicine.  Counter to the IDSA is the International Lyme and Associated Diseases Society (ILADS).  I suggest you take a tour through ILADS [dot] org and particular Dr Burrascano's treatment guidelines there.  Don't get bogged down in it all, but it will give you and idea of what it's all about.

I suggest you find a Lyme specialist, preferably but not necessarily an ILADS member, so you know which side of the political divide the MD is on.  There is a referral function at the ILADS website as well as other websites.  If you need those URLs, let us know.  truthaboutlymedisease is one.

I suggest also that you get and keep copies of all tests run on you, because it can be useful to the next doc you see.  It took many of us months and years of misdiagnosis to get to the point where you are now, so you're ahead of the game in some ways.

That's good!  

To answer your specific questions, the chances of contracting Lyme in the Ohio woods are quite good; the chances of having Lyme with no fever and no rash and no tick seen are also quite good.  You are doing the right things, so keep on going in pursuing this.  The sooner you are diagnosed (assuming it's Lyme+), the easier and surer is the cure.  Time is of the essence:  pedal to the metal.  Once the little beggars move in and get comfortable, they are hard to get rid of.

Let us know what and how you do and if you need anything else.  

Best wishes --

[lymiebrooke]

Your story is very similar to mine. I have went round and round with neuros/rheumos for 5 months now, and just recently said enough is enough and went to a lyme literate doc. here in WI. Come to find out, I have lyme disease with all of the coinfections that they can test for, but never remember being bit and I didn't have a rash. Believe me, lyme disease was not a rationale explanation in my mind. If nothing else will explain your symptoms, don't settle for that! Go to a LLMD whose testing and treatment is way beyond the scope of the reg. medical world (believe me I went to some top docs at MAYO, the U of M, etc... who couldn't explain what was going on.