testing for lymes

Hi All

been on this journey for a dx for 3 yrs went to a neuromuscular consultant today after being discharged from my MS specialist early this yr as he had done all the test and they were negative.

I had some blood test done but was surprised he had asked for a lyme test as i live in the uK and cant ever remember being bittian.

he is also ordering a ssep back to him in 3 mths.

what are your sx that you all have experienced with lymes and can it come up negative even if it is not.

sam

[JackieCalifornia]

You're not the first person to be diagnosed (mistakenly) with MS -- I give credit to your MD for running the Lyme test, because it seems many MDs won't even consider Lyme as a diagnosis.

Many of us don't remember being bitten or getting a circular (bullseye) rash, so that doesn't exclude Lyme as a possibility.

The standard Lyme blood tests are not terribly accurate and need to be interpreted in view of your symptoms, which often takes a Lyme specialist (which you will see called here an 'LLMD', or 'Lyme Literate MD,' meaning a physician who has a more progressive view of Lyme and its coinfections (the ticks that carry Lyme also often carry other diseases too).

To learn more about Lyme, I would suggest going to ILADS [dot] org, where there is a great deal of information including a long list of possible symptoms.  Lyme is sometimes called a 'great imitator' because it can seem like other diseases (e.g., MS), and reading down the list of Lyme symptoms seems like a full catalog of all the miseries to afflict humanity since the Flood...but that's how Lyme works -- it's a systemic infection that affects each person differently, and affect that person differently over time.  Thus the diagnosis is a hard one to make sometimes, especially when combined with a coinfection, which can change the whole symptom picture.

Hope this is helpful -- let us know how you do.

[wonko]

Lyme was not "discovered" in the US until the 70's.  It was not initially recognized to be an infection, let alone one that was already known to other parts of the world.  So while we call it "Lyme disease" in the US (named after the town where it was first noted), "borreliosis," as it is also called, has been known in Europe for much longer.  

Whatever you call it, it's difficult to test for, and even harder to find a doctor who takes it seriously.  And no, most of us don't recall a tick bite.  Infectious ticks can be as small as a poppy seed, and bites don't always cause the "bull's eye" rash, either.

There are 100's of symptoms of Lyme, and further more, ticks can carry other organisms that make us sick, making the presentation even more complicated and adding more possible symptoms.  

It's more of a pattern that develops in Lyme than a single tell-tale symptom.  With untreated Lyme, ppl become increasingly ill, yet will often have normal or non-specific medical test results.  As JackieCalifornia mentioned, Lyme is systemic, so it can affect your heart AND nervous system AND the joints, or ANY other part of the body. This can help distinguish it from MS, which is a disease of the CNS.

However, Lyme can cause a lot of MS symptoms, and can also cause white matter brain lesions.  I had a lot of neuro symptoms for a long time before I developed musculoskeletal involvement that pointed away from MS.  But I had tons of paresthesias, heavy clumsy limbs, eye pain/mild double vision, and white matter lesions.  My LP was negative.  I also have a positive Babinski reflex and some loss of sensation in my legs on neuro exam (like when they use the pins/tuning fork).  

Later on, I started to develop joint pain and sometimes had the "butterfly" rash that is often associated with lupus!  This after a year or so of worrying about MS.  That was kind of my clue that something fishy was happening to me...

I always tested negative on the screening test, and only had a couple of "bands" on a Western blot done by a specialty lab.  (If you don't know what that means, suffice it to say that most doctors would [and did] say that I don't have Lyme.)

I'm 9 months into treatment and have made big improvements.  So while I don't recall a tick, or even understand how a tiny bug could've made me so sick, here I am, responding to Lyme treatment!  

I hope that your doctor does follow up on this possibility, and that you get answers and help soon.
  

[uk2]

Thank you JC for your reply and wonko.

This seems a very hard disease to diagnose and even harder here on the NHS in the uk i think i will have to go private to sort this one out. Thank you JC for the link i will check this out i have looked at some of the sx but like you say they also match fibro and MS and others so that makes it hard, its hard enough being ill without trying to fight for a dx on top it wears you out emotionaly as the drs think its all in your head.

sam

[wonko]

I would also suggest you look up the website for the Lyme documentary "Under Our Skin."  The trailer is viewable online, and it contains people commenting on the very confusion you state.

Keep in mind that fibro is a syndome, not a disease.  It is defined by a cluster of symptoms, and has no known cause.  Likewise with chronic fatigue.  In the case of both sydromes, you'll meet several patients who ultimately discovered that Lyme was the underlying cause.  (Not that ALL cases of theses syndromes are Lyme, but Lyme patients are commonly misdiagnosed with these conditions durng the quest for diagnosis/treatment.)

MS is a disease that is of unknown cause, but is defined by the damage it does to the CNS.  The name literally means "multiple scars."   Those scars eventually show up on imaging or in the spinal fluid or in obvious neurological deficits on exam.   If your tests are all negative, yet you are very ill and have been for some time (years) with widespread symptoms, than MS seems unlikely.  (And yes, I did go through the same, seeing 4 neuros in 2008 due to "non-specifc" brain lesions, and incorrectly thinking that all mimics had been ruled out so it just HAD to be MS...Late stage Lyme is also a diagnosis of exlusion, because the tests simply fail in so many cases.)

[uk2]

What to then as they are the same almost in sx but not in cause and if i have the test the western blot and it comes back negative and i cant remember being bittian then how do i get a dr to take me seriously the lyme test they are doing in the uk on nhs is only 60 % right,i guess a private lyme dr is the only way forward if i want to put an end to this and i guess if he treats me and i respond to treatment i'll its not fibro but lymes.

how much damage can it do left untreated? its been nearly 3 yrs i've been ill.

[patsy10]

I have had symptoms for over 15 years since my bullseye rashes.  I do have permanent damage but I am functional and able to work.  I have pain and stiffness all the time which never goes away but I can live with this.  I had damage to my nervous system which has caused POTS.

[JackieCalifornia]

I agree with comments made above -- and if you can, I would suggest you see an LLMD even if you have to pay for it out of pocket (without insurance).  

Part of Lyme for me was being so confused and beat down that I couldn't think straight -- even after I got diagnosed, I didn't start medications for several months because I was afraid my minimal functional level would go down even more due to medication side effects.  Well, that was wrong -- the meds sometimes have side effects but nowhere near as bad as having the disease untreated.

You are only 34, and you have a long life ahead of you -- so if I were in your shoes, I would press ahead to get a diagnosis -- of Lyme or of whatever else it is.  MS is not 'curable' as I understand (tho its progress can be slowed considerably with modern medicines), but Lyme CAN be cured, tho for some of us it's not really a full-on 'cure' but rather a holding action that makes daily life better esp after a very long infection -- not everyone responds to the available medications, which is why LLMDs try different things on different patients.  

We each often have other infections brought by the same 'Lyme' ticks, and that changes the symptoms we have and the treatment we get, so it's not a simple thing to suss out and cure immediately like a broken arm.  It's a dirty trick that when one is so ill, one must also make these complicated decisions about which path and treatments to follow, but that's the way it is.

I went through about 20 MDs before I got a tiny positive on one of the not-very-good Lyme tests run by an endocrinologist -- she said she didn't think I had Lyme (as had all the other MDs who even opened their minds wide enough to consider Lyme), but she said it couldn't hurt to follow up.  She was totally puzzled at my illness, and she teaches at a leading university medical center!

I then found my way to an LLMD, and am so very much better.  All of us here know how hard it is to go through what you are, and we send you bouquets of courage.  

[im_ticked_off]

i am on iv treatment now for lyme i did not have a positive test come back,but i did see a lyme doctor and he told me that was what i have i had all the symptoms, i started oral antibods last april and made it til march of this year when i went into relapse.thats when i had the iv put in to me, is their anybody else out their that has been on iv treatment for this long i am still having major pain with my joints and my lymph glands are still very swollen, i am going to have a biopsy done on my glands just to rule out anything else, if anybody can help i would be grateful..............i'm ticked off

[Kaydey]

My doctor didn't want to even consider Lyme so I had to find a different physician that would listen to my symptoms and take me seriously...  so have many others on this list.

I have been bitten so many times and found ticks attached. But I never even thought about Lyme until a friend of mine was diagnosed.

I am just now being tested.....

It is coming upon 13 yrs of me being sick and finally finding a Dr. that has listened to me and believed me and is testing me.

[JackieCalifornia]

Wow, getting IV treatment!  That is hard to accomplish, because many MDs don't want to go there.

So that alone indicates your MD is focussed on your situation.

Were you tested for other infections (for example, bartonella, Babesiosis, ehrlichiosis, others) that are carried by the same ticks?  

[suezq6371]

I got bitten last year this time,gthe bullseye 1 one month or so after removing the tick.I recieved treatment and now I am having thee me symptoms without the bite, my doctor says I was treated early enough that it will t come back ......I wantknow it it really can comeback?????


n a lot of pain

[ree427]

To my knowledge, Lyme can return if it wasn't treated adequately the first time. Also be sure you were not bitten and infected again...In my case, I never saw the bite or had a rash.

[JackieCalifornia]

I am in the same situation as Ree -- didn't the bug, the bite or a rash.

Incomplete treatment suppresses the disease, which can lie dormant, and then jump up again when the immune system is down for whatever reason, so I read.