I just happened to talk to the medical assistant at my LLND's office and she said "oh, your Advanced Labs Lyme test is in". She emailed it to me and it's NEGATIVE. It says "Patient blood culture displays negative growth in long-term culture. Final Report".
OMG...I am so scared now that I don't have lyme and instead of something like MS. Remember, I have 20+ lesions on my brain and SO MANY of my symptoms are MS like!!!
Wow...here I go again.....
I wish I hadn't gotten this test done... Because now I'm scared.
For thos who don't know me, I've tested positive many times on the Igenex test with a highly positive Erlichosis test. My LLND said he wanted me to get this test done and that it will soon be the "gold standard" of testing.
Best advice I can offer: try to chill. I know it's hard, and don't suppress your feelings, but try to deal with them in a soothing way. A nice warm Epsom salts bath, a walk around the block, whatever is comforting.
And when you see the doc, ask point blank about MS and the doc's reasons for saying it's *not* MS.
The soles of my feet were sore long ago, when I think I had a "beginner's" case of Lyme or whatever infection, with just tiredness as the main symptom, plus when I got out of bed in the morning I would hobble around for a while till my feet settled down. Thought it was falling arches, age, bad shoes, whatever, till I later (after an apparent re-infection) got really ill and that got me to an LLMD eventually. After treatment for Lyme and babesia, my feet got fine and have stayed that way for several years now.
Remember to be skeptical of tests ... they aren't perfect and neither are the people who read them. Take the results to the LLMD when you next go, and put it into the mix. And DO have a good discussion with the LLMD about what to do to rule out Lyme. I'm guessing a SPECT scan may be next up, since it will differentiate between Lyme and MS, in that MS won't (to my understanding) show up on a SPECT scan. MRI is not a good diagnostic tool for Lyme, from what I've read.
Take care, have some soothing tea, put your feet up and meditate a little. It will get better! Keep us posted --
The gold standard by LLMD is igeneX test results. You do have Lyme, the blood culture shows nothing and is worthless.
Mainstream doctors do not know about Lyme.
I was in your shoes with all those regular blood tests and cultures coming back negative and being told I had MS and Lupus and more but went to LLMD and igeneX tests were positive for Lyme, Bart's and babs and there is a huge improvement in my symptoms now since starting treatment.
I tell this story just to make you aware, being told I had lupus and MS and other auto immune diseases, I was given steroids. The next thing I knew I woke up o a respirator, came close to death because of ignorant doctors.
I did have a SPECT scan a few years ago ordered by LLMD in SF and in was normal....
I have a some thoughts going through my head about all of this:
This culture test could be a false negative. I found this wording on a website:
Some doctors consider a bull’s-eye rash diagnostic and don’t require further tests. Others, however, require laboratory confirmation before treatment.
Culture is the “gold standard” test for identifying bacteria. A sample of the organism is taken from the patient is allowed to grow in a medium and then identified. Culture is accepted as proof of infection. While culture is used to diagnose many infections, it is not practical for Lyme because the bacteria grow too slowly. There are no commercially available culture tests for Lyme.
I also read that lyme bacteria hide in the joints and brain. Is it possible that the small amount of blood they took does not happen to contain lyme bacteria?
When my symptoms first started, I had symptoms come on like crazy....numbness, tingling, vibrating, hugging feeling around torso, the shakes, much much more. Is it possible that the a lot of the abatement of symptoms after starting the ABX just so happened to coincide with a remission of MS (if that is the case?)
Could this be another autoimmune disorder such as RA or Lupus? I was tested for these when first seen by UCSF and they were all normal/negative. Is it possible that I was not in a flare when first seen? I have not had any of these tests repeated since that first evaluation.
If this is lyme, wouldn't it stand to reason that I would have accumulated more lesions since my first MRI which was almost exactly two years ago? I have had three MRI's total and none have shown new lesions.
All these things started abruptly about 3 years ago (had this for about a year prior to my first MRI). Is it at all possible that all these things are Menopause related???? I doubt it....
Could this be heavy metal poisioning and toxcity. I've read that mercury poisioning can also cause lesions.
Do I do ABX treatment and risk that this is lyme and getting worse?
Well, those are some of my thoughts (and I have many). This is all so very frustrating!
Well, I'm going to go home and have a Big glass of red wine. My hubby and I are going to Vegas this weekend and I'm going to try really really hard not to let this spoil my trip.
Oh, last week I decided to get a 2nd opinion and have an appt on Monday, 9/17/12 with a neurologist that came highly recommended to me. I think I'll feel better after that.
Also, I have my two year MRI check-up in December. So, we'll see I guess and time will tell. I just hate this wait and see. I want to move on with my life and stop worrying about all of this.
all you "thoughts" are valid and good that you are thinking and making lists of possibilities. too bad docs can't do all this research and actually get to the bottom of things..
try not to stress. stress is bad.
I seem to be in the same situation as yourself. Sick since 2007, MRI's stayed stable until last year. New symptoms, told most likely not MS, but don't know what it is. Neuros said certainly not Lyme after all these years.
Facial pain and bilateral tingling in both hands, feet and face. Migraine Auras without headache. Anxiety kicking in big time. Positive Babesiosis test in 2007 from Quest, so definetly tick exposure but not bullseye. Certain bands positive thru Igenex but not definitive.
Neurologists are generally not believers in Lyme as a persisting illness, and MRIs are usually not the first choice for a reliable diagnostic tool to rule out Lyme.
It's not necessary to have a bullseye rash to have Lyme -- I never had one, and neither did others I know personally.
If your neuro is the one reading your IGeneX tests, then he may be reading them too narrowly, tho neuros are not usually interested in IGeneX tests in the first place.
And the bottom line is that you have a known tick bite with a proven co-infection and common Lyme symptoms -- but your doc says you couldn't have Lyme?
AND you have a positive IGeneX (Western blot?) test but not "positive enough" -- although immune system response, which the Wblot measures, fades over time -- and your bite was 5 years ago?
You didn't ask for advice or comments, but in your situation, I would take all those past test results (if available) and go find an LLMD for a second opinion. I would not hesitate for a second to do that.
I didn't mean to highjack this thread, but I can understand how Carrie is feeling. I have seen 3 very good LLMD's and thought I put this behind me. Got better substantially on antibiotics for roughly a year, but never got to 100%. Was told was probably residual damage and nothing more left to do.
Went on my merry way for quite some time until last year when I began to have an major increase in my migraine auras (no headache) and tingling of my extremities. That scared me because that never happened to me earlier. So in essence, this was a new symptom. My MRI's changed last year when I started with the tingling and 2 new lesions. Tingling went away after roughly 6 weeks (remission from MS?). Now the end of June, I woke up one morning with cranial nerve pain, otherwise known as atypical Trigeminal Neuralgia. I have now had pain bilaterally which is a big pointer towards MS.
My neuro (not a big fan) actually believes in Chronic Lyme but feels too many people claim this who don't really have it. She dismissed me and said go back to my LLMD and gave me a consult to the local MS clinic here in CT. She said she doesn't believe it is MS, but have them take a look. Who knows, just tired of fighting the fight and this facial pain is brutal.
I am just looking to get some answers and want to know what is actually going on.
My 1st LLMD did my Igenex testing and I had several positive bands. 31 and 39 were the big ones, but not enough to get a positive out of Igenex. Doctor called it positive and treated my anyways. I should have stuck it out with that doctor who was brilliant, but I was terrified of the controversy and high doses of antibiotics at the time. Unfortunately, that doctor stopped practicing last year for medical reasons and appears to not be coming back. Saw Dr. F in NJ for awhile, but not much progress besides my intial stuff. I am seeing my local LLMD again but her regimine is Biaxin and Plaquenil. Broke out with a rash on my face that started covering my body and she had me stop the Plaquenil, so I am just on the Biaxin. No changes yet.
I guess I can really understand Carrie's plight because she her story sounds so very similar to mine. The MRI's, lesions and symptoms sound familiar. I know the horrible anxiety of not knowing what is wrong and the fear of an MS diagnosis. Actually, the MS diagnosis doesn't scare me as much as the Trigeminal Neuralgia does. The thought of never getting rid of this facial pain is wearing me down mentally. I can see why they call it the "Suicide Disease." Not that I am contemplating that, but I have been horribly depressed and anxious over the last 6 weeks and overwhelmed with the scary prospects of my future. That horrible feeling that your life will never be the same and constant dark clouds is not good. I never thought I would be back in this place again like I was 5 years ago not knowing. I thought this was done.
I apologize to Carrie for highjacking her thread and for the length of this post. Thanks again.
No apologies necessary -- we're all in this mess together.
There are others here who know more than I do about the ins and outs of different medications, but I know I've read that two antibiotics are needed to treat Lyme: one of break open their slimy shields (aka biofilms or cysts) and another to kill the bacteria. Biaxin is the latter; the former for me was Flagyl (metronidazole). Trying to kill the bacteria without a cyst-buster is like trying to get the car into the garage without opening the door.
The trigeminal neuralgia may be a passing effect -- it's nerve irritation, and with treatment may resolve. Did a doc tell you differently? Pain meds should take care of that until the cause is resolved.
I'm not medically trained, but if I were in your situation I'd track down a new LLMD and have a work up from the ground up. I see you're in CT, a short train ride from Columbia U, which has a Lyme research center and if they don't take patients could perhaps guide you to one.
Also email to
contact [at] ILADS [dot] org
and tell them you need an LLMD in or around Conn.
And of course anxiety is not unwarranted in your situation (I'd be anxious too) but it's also a symptom of Lyme.
You say above: "My 1st LLMD did my Igenex testing and I had several positive bands. 31 and 39 were the big ones, but not enough to get a positive out of Igenex." Really?? Bands 31 and 39 do NOT show positive EXCEPT in the presence of Lyme. Your doc maybe didn't want to read it that way, but the docs are all over the place sometimes.
You KNOW you are sick, you have evidence of Lyme, you have symptoms of Lyme, and you even live in Lyme country, Connecticut!
Doctor called it positive and treated my anyways. I should have stuck it out with that doctor who was brilliant, but I was terrified of the controversy and high doses of antibiotics at the time.
I'm not medically trained, but if you were my neighbor, I'd be dragging you to a new LLMD. I'd wager your Lyme was not fully treated and perhaps you even have co-infections that were undetected ... OR given where you live, you could have gotten another dose of Lyme more recently -- docs never seem to think of that, but it happens!
Please consider calling Columbia for a referral or a work up! It's what I would do.
I can understand all your questions and thoughts. When I first heard about the culture test, my PA said that in their testing, 80% of chronic Lyme patients were coming up positive on the test. I just read an article by Burrascano on his history with Lyme, and he had access to MacDonald's culture back in the 80's. He would test patients who seemed well after some period of time of abx. They would test negative. Months later, some of them would be back with symptoms, and most of them tested positive on the culture. He concluded the bugs were hiding out somewhere in the body's tissues, not circulating in the blood where they are vulnerable to the immune system. If 80% of chronic Lyme patients were positive on the new culture in their testing process, that means 20% tested negative.
Even biopsies of tissues or joint fluid can produce false negatives as there might not be any spirochetes in the precise spot where the biopsy was taken.
And so, my thought is that you could indeed test false negative on the culture test because there weren't any or enough spirochetes in the sample they took. But then, an autoimmune disorder is certainly possible.
There is a theory that people who get brain lesions also have Bartonella. I also read about the HHV6 virus recently, and it is believed to cause brain lesions. Not everyone with Lyme or Lyme + Bart gets brain lesions. I am wondering if it is Lyme + HHV6 that is the culprit for lesions. If knocking down the Lyme enables the immune system to rev back up to fight off HHV6, that could stop new lesion formation.
I had a follow up MRI 5 and 6 months after my first one, and I had no new lesions. On the last one, the MS neuro said two of the lesions appeared a bit smaller, which gives me hope that some of them might heal. I definitely still have Lyme.
If a doctor who knows MS well is saying you don't look like an MS case, and an LLMD says you could still have Lyme, I personally would follow both of them. Antibiotics probably won't hurt you, but steroids certainly will. With MS like symptoms you would probably need IV meds. Orals may not be sufficient to penetrate the CNS.
I would also encourage you to stick with the LLMD. But given your history and your neuro involvement, you probably need Rocephin to have a hope of being cured. It could be that the orals you were on just weren't sufficient for you. From what I have read, patients who undergo Lyme treatment and stop before they are fully recovered nearly always relapse. My doc recommends orals for 3 months after recovery to catch any leftovers.
In other diseases, the expectation is that antibiotics kill most of the bugs, and then the immune system can clean up the few left over. Well, Burrascano says that this may not work with Lyme, as the few left over know how to dodge and hide out. It might be months or years, but eventually, they restart an infection.
I know well that abx are hard on a body. I am waiting to see a nephrologist to help me with my underperforming kidneys. But I am convinced that the challenges of getting through long term abx are better than the long term effects of a Lyme infection.
I encourage you to ask your LLMD about IV meds for you.
I am back from Vegas today and did not let this all bother me one bit believe it or not.
I am going to call my LLMD and make an appointment with him tomorrow. I do still believe, despite having a negative culture test, that I have lyme. (I'm saying that now, but knowing myself, I'll be doubting it again in 5 minutes!). I just wish so bad that there wasn't such a controversy over all of this!
The manager from Advanced Labs called me on Friday morning and said that he feels that if my infection was "current" that there is no doubt that my culture would have come back positive.
I saw my regular doctor today and told him about all of this and he told me that IGG on a test means that the infection is "current" and IGM means it is in the past. I was just looking over my old Igenex tests and my positive tests are dated and show as follows:
All the Positives are by Igenex standards..not CDC
11/4/10 (My first test..IGM Negative, IGG positive and Erlichosis 1:80 (anything greater than 1:15 suggest disease state).
3/23/11: IGM Negative, IGG Positive
07/28/11: IGM Negative, IGG Positive
11/1/11: Both Negative
01/27/12 IGM Negative and IGG Back to Positive and Ercholicosis back to Positive too. (this test was taken a few weeks after starting on Flagyl which I think caused my symptoms to flare and back to positive.
Anyhow, Rico and Jackie, I am going to insist on IV ABX this time but I want to get back to my LLMD and really get his thoughts on the Advanced Labs thing.
I know for certain I had a tick bite and it was embedded in my belly button for probably a number of days before my tummy became sore and I noticed it.
Tina: Don't be sorry. Trust me, I feel for you and believe it or not, it does feel a little better to talk to people who are going thru similar circumstances.
Tina: What is a migraine aura? A few months before all my symptoms started, I was watching TV and suddenly, in my left eye, I started seeing all these different colors and had I guess double vision but in the left eye only. I had just taken a pretty big bunch of Vitamin C and D (I had been exposed to a virus and was afraid of getting sick because I was already dealing with gallbladder issues at the time). Anyway, it lasted maybe an hour or two and went away. I dismissed it as "wow, those vitamins were strong", but I often wonder if that was the first sign of something being "wrong". I've had my eyes/optic nerve checked and everything is normal...
Anyhow, I'm tired from being gone for three days and this is the first chance I've had to catch up on things.
"The manager from Advanced Labs called me on Friday morning and said that he feels that if my infection was 'current' that there is no doubt that my culture would have come back positive."
Yeah, well, that works only if you believe that the tests are THE word. Culture is supposed to be good, so I read, but your history and symptoms *have* to be taken into account, and lab person is likely to forget that.
Don't assume he's right. A lab test is a data point, not a diagnosis. Talk to your doc.
This might be helpful for explaining a migraine aura. It usually includes visual symptoms but can also include other sensory issues.
I have also read of other Lyme patients who experienced weird color and vision symptoms separate from a migraine.
What is interesting to me is that you went from. Negative IgG back to positive after taking Flagyl. It sounds to me that before the Flagyl, you had Lyme hiding out in biofilm colonies or in cyst form. Flagyl breaks them up so that the immune system or an antibiotic can kill them.
You can see why testing is so problematic! It is like someone knocking on your door and asking if you have a small needle hidden somewhere in your house. You can search for hours and not find it. But that doesn't mean it isn't there.
Jackie: Thanks for the clearing up on the IGG vs IGM...I knew I should have written that down when he told me that instead of relying on my memory! ha ha
Rico: Yes, I think you are right. I know when I started taking that Flagyl, my left foot had nonstop vibrating in the bottom of my foot. I got really scared about getting a permanent neourapathy from the Flaygl (because that is a possible side effect of that med) and went off of it. I don't know if that was the smart thing to do or not...I'm sure I was herxing and breaking up the cysts but I got too scared...
I'll call my LLMD today and make an appointment...going to do it right now.
Got my appointment with LLMD. Not until Dec 7th though. I'm confident though that I'll be able to get in much sooner.
I was taking Amoxcillian (20 pills total) for my tooth issue and then a couple of days after I completed, I went in for some Igenex testing. I didn't really think about it unfortunately, otherwise I should have waited. I wonder if that short course of ABX is going to effect my test? What do you think?
Don't worry about the amoxicillin ... just make a note to mention it to the Lyme doc so s/he can factor it in to you history -- what dose, for how long, on what dates. It may be meaningless, but the doc is the one who will know. I think of Lyme and its coinfections as a jigsaw puzzle as big as a city block, always with pieces missing and the picture obscured, but a good LLMD, with enough pieces of data, can make a good stab at figuring out what the puzzle looks like.
(And sometimes taking antibiotics before a Lyme test actually gives a better [more positive] result on a test. The abx stir up your immune system to attack the bacteria, and since the Western blot test measures your immune system reaction to the Lyme bacteria, instead of measuring the Lyme bacteria directly.)
It's all complicated, way more than it seems it ought to be, but that's why having a wise doc with an open mind to the mysteries and tricks of Mother Nature is so important ... and also why giving data to the doc [like being on amoxicillin for __ days up until ___ days or weeks before the Lyme test] is so important.
Also if your memory is a bit dodgy, you might want to make some brief notes, like one page long, of your history and your current symptoms and your question, giving a copy to the doc (and keeping one in your hand) at your appointment. Memory and concentration are often impaired in Lyme, and stress just makes it worse ... a Lyme doc understands that and likely won't think it strange that you're bringing a cheat sheet to an appointment.
You're headed in the right direction! Keep us posted.
While some antibiotics before antibody testing can be helpful, I believe that Advanced Labs says you should be off abx for a month before the draw for their culture test. I think it's because oral antibiotics usually kill spirochetes in the blood first, which means there aren't any or enough to culture.
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