who diagnosed you and with which test?

[deseperate]

was it a general physician or LLMD.. I mean when you went to LLMD were you already diagnosed or he did that for you ? how many doctors you saw till you got diagnosed, and for how many years till they diagnosed you ?

if not a LLMD, which doctor specialty you feel is more knowledgeable about Lyme other than LLMD ?

which tests, blood work  other than Igenex can give an insight on the presence of Lyme ?

I heard that lumbar puncture can sometimes be used to detect lyme in the spinal fluid.. is this accurate ?

also, which is better LLMD, LLND or integrative doctor, functional medicine  to start with ?

[JackieCalifornia]

You're very welcome, and it really is a team effort here.  I've been helped a great deal here in my battle with Lyme and babesia, and I'm glad the site is helping you too.  Hang in there!

[deseperate]

Jackie you are really great
Thank u so much
The most sincere kind person I have ever met online and always ready to help and write in details
God bless u

[JackieCalifornia]

Sorry, we get in the habit of using abbreviations without remembering that not everyone knows what they are.
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CDC = Centers for Disease Control:  US government affiliate that keeps an eye on diseases that can be passed through the population, like flu and measles .... and Lyme.  The CDC does research as well.  
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PCR = polymerase chain reaction:  The technical definition is "an enzyme that brings about the formation of a particular polymer, especially DNA or RNA [which are genes carried in our cells]".  

More specifically, in Lyme disease diagnosis, a 'PCR test' is used to see if someone who may have Lyme has bits of Lyme DNA in their blood.  If the test is positive, then it is a strong indicator that the person has Lyme disease.  

Other, older tests more commonly used in Lyme diagnosis are called Western blot and ELISA.  These tests don't look for the presence of Lyme DNA (as the PCR test does), but instead look for the immune system reaction to the presence of Lyme bacteria.  

The Western blot and ELISA tests are still useful, but if they are negative for Lyme, it may well be a 'false negative', meaning the test says 'no Lyme' but you can still have Lyme.  Why does this happen?  Because the Lyme bacteria have the sneaky ability to suppress the immune system, and as a result the test can too easily come back negative, because the test looks only for your immune system reaction.  Some docs still rely only on Western blot and ELISA, but Lyme specialists often use them and *also* use PCR testing.
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abx = shorthand for 'antibiotics', just like tx = treatment, sx = symptoms, and some other similar abbreviations docs and nurses often use in medical records
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Hope that helps!  Glad you asked.  

[deseperate]

Sorry but what are all these abbreviation
CDC
PCR
abx

[JackieCalifornia]

So no PCR test at IGeneX?

[wonko]

I was diagnosed by an LLMD mainly by symptoms, my igenex western blot was negative by CDC standards.

I saw about a dozen other doctors before seeking an LLMD, all vehemently denied I could have Lyme.

[Ricobord]

I stumped a dozen doctors, mostly specialists, and none of whom considered Lyme.  A pulmonologist failed to consider Babesia (which I also have).

I figured out myself through research and the relative of a friend who was diagnosed a few months before me. Once I spoke with her on the phone, I was convinced I had Lyme and Babesia. We just had too many unusual symptoms in common.

I requested Lyme testing from my neuro. He admitted he hadn't thought of Lyme because we're in California. He said he thought it was only on the East Coast and occasionally in the upper midwest.

I was negative on antibody screening tests on both blood and CSF so he told me it wasn't Lyme. So did another neuro, a hospitalist, and a GI doc. (The GI doc completely missed multiple signs of Bartonella in my liver.) The head of ID at the hospital refused to come see me, telling the hospitalist that I didn't have Lyme because the CSF test was "highly accurate."  No one took my claims of Babesia seriously and there was no accomodation made for the fact I'd recently had steroids, which suppress the immune system.

LLMDs say that somewhere around 30% of people with neuro Lyme test positive in their CSF. One researcher showed that the bacteria just curl up and go dormant in the spinal fluid. They just don't really like it. I can't find any study that indicates that neuro Lyme patients always have CSF antibodies. I think it's another one of those pronouncements from a self proclaimed expert that is really just an opinion.

I was told that it was a shame I'd already spent so much money on IGeneX testing (still pending at that time) and I was discouraged from the LLMD appointment I'd already booked.

Shortly after going to the LLMD, my IGeneX results came back.  Only the IgM Western Blot was IGeneX positive. Other Lyme tests were negative.  I am one of those late stage cases with a weak IgM response and almost no IgG response.  The PCR was negative, which is common. (It's definitive when positive, but frequently false negative.)

So officially my diagnosis came from the LLMD. Lucky for me, my GP believes the diagnoses and is supportive.  No mainstream doc would have diagnosed me with the test results I had.  None of them even asked if I'd been out of the country. (I got it overseas... a big part of the reason I tested negative. U.S. based testing was designed for early stage New England based Lyme with swollen knees and a bulls eye rash.)

You'll have to make your own decision on what kind of treatment you want. I concluded I was too sick for the natural approach and I needed powerful antibiotics. I was right. I have only improved with shots or IV meds. On most of the orals I've tried for Lyme, I just got worse.  (Note: I don't think this is true for most patients.)

I have chosen the integrative approach. Antibiotics alone can wreak havoc on a body already messed up by Lyme and coinfections. The supplements have been a very significant part of my treatment. I recommend experienced ILADS affiliated practitioners.  There are unknown numbers of doctors out there who are willing to treat Lyme who really don't understand the illness or know what they're doing.

[kathloj]

I saw 2 ortho surgeons (had knee surgery for damaged cartilage), several visits to my GP in the past year, a neurologist, chiropractor, physiotherapist.....and none of them could figure out the cause of my symptoms. After doing much research on line (my nursing background helped!) and corresponding with people on different Lyme forums including this one,  I convinced my GP to order a Lyme blood test. Unfortunately Canada uses the faulty 2-tiered Elisa blood test which has a very high inaccuracy rate. It came back Neg but I was still not convinced of those results. I then took the Igenex test and saw both a LLMD in the U.S and a LLND here in my own city. Both diagnosed me with Lyme and 2 co-infections (based on clinical diagnosis of symptoms backed up by lab work). So from the start of symptoms it took me about about 8 months to get an official diagnosis. What kept throwing me off in my research was the "bullseye rash" that so many sites indicate you have if you have Lyme disease. Not the case at all! So presently I am being treated by a Naturopath. That was just my personal choice at present. Once she gets my immune system built back up, I may then do some antibiotics but I'll wait and see how the herbal antimicrobials and other supplements work first. I've corresponded with quite a few people that have had success with those alone. Good luck!

[deseperate]

You are great.. Thx a lot

[JackieCalifornia]

Good questions!

Others may well have different answers, but here are my comments, based on my own experience:

     --- You ask:  "Who diagnosed you and with which test?"  

The 20th MD I saw looked through my records (I brought all my previous test results with me, to avoid paying for and waiting for having the same tests done over again) and the only thing she didn't see that had been tested for was Lyme.  

She ran the standard Lyme tests that nonLLMDs tend to use:  Western blot/ELISA.  The test came back somewhat positive, but the doc said soothingly that I couldn't possible have Lyme because I didn't look sick enough.  

So this doc actually DID diagnose me, but didn't believe her own diagnosis.  She said "you don't look sick enough" to have Lyme.  Riiiight.

     --- You ask:  "was it a general physician or LLMD.. I mean when you went to LLMD were you already diagnosed or he did that for you ?"

The doc who ran the test that came back positive but didn't believe it herself was not an LLMD, just another doc in the caravan of docs I was working my way through.  I don't recall at the moment, but she was a specialist of some sort.  Endocrinologist?  Maybe.  

     ---  You ask: "how many doctors you saw till you got diagnosed, and for how many years till they diagnosed you ?"

I went through 20 docs, before this last doc said very kindly, on seeing the positive test results:  "Oh, you couldn't possibly have Lyme.  I have patients with Lyme ... but they are all near death."

Honestly.  That is the exact quote.  She was trying to cheer me up, that I wasn't going to DIE.  Unreal.  It took me over a year to work my way through all those docs.  Maybe a year and a half.  

I had a college friend who had Lyme long ago, the first time I ever heard of the illness.  I knew it was serious and real, but I didn't know anything else about it.  

     --- You ask:   "if not a LLMD, which doctor specialty you feel is more knowledgeable about Lyme other than LLMD ?"

LLMD is not a specialty -- it's more of a ... state of mind.  There is no test to take to be an LLMD, and no organization that confers the title.  It is a made-up term used by patients to differentiate between docs who think bigger and wiser thoughts about Lyme than the so-called mainstream docs have.  

If you ask a doc if s/he is an LLMD, they will likely say 'no' and look embarrassed.  There is no degree or diploma that makes anyone an LLMD -- it is just slang terminology for a doc who has a more progressive and aggressive stance when it comes to diagnosing and treating Lyme.

I know, it makes them sound like crackpots.  But the real crackpots, imo, are the mainstream docs who blow off Lyme as no big deal.  That will change eventually, but not soon enough for my taste.

     --- You ask:  "which tests, blood work  other than Igenex can give an insight on the presence of Lyme ?"

There are other labs that also run Lyme tests.  Which lab the doc chooses depends on what the doc is relying on the test to evaluate.

For example, the first round of tests may be Western blot and ELISA tests through a regular lab like LabCorp.  Basic stuff.  It is possible to test positive for Lyme on those tests, but they often miss a true Lyme infection and come up negative, because the Lyme bacteria know how to turn down the operation of your immune system, and these two basic tests (W.blot and ELISA) are looking for your immune system's reaction to the presence of Lyme.  Therefore the problem is that Lyme suppresses the body's immune system, so the tests that rely on immune system reaction can well be negative, even though you really do have Lyme.

My doc was surprised that my immune system was still up and fighting, because I was positive on one or both of the Western blot and ELISA tests, which I learned later was not common.  I just have a strong immune system, it seems.  But many with a real case of Lyme come back with negative Western blot and ELISA tests.

          ----- You ask:  "I heard that lumbar puncture can sometimes be used to detect lyme in the spinal fluid.. is this accurate ?"

It is sometimes used, but Lyme specialists do not generally use it, from what I read.  I haven't done much reading on it, and my Lyme doc didn't do lumbar puncture (aka spinal tap), I think because there are less invasive ways to test -- like through a blood test -- that are just as accurate.  

Lumbar punctures are invasive (sticking a big needle into the spinal column, between the vertebrae, to collect fluid to look at under a microscope).  The side effects of a lumbar puncture can include severe headache and are more risky generally than a simple blood test looking for Lyme DNA in the bloodstream.

There may be times when a spinal tap is called for, but I am not aware that those are common or on what basis the decision is made.  In someone with a case of neurological Lyme, perhaps there is a greater reaction on the lumbar puncture test than otherwise, but I don't know that that is what the decision is made on how to test.  It's my impression that spinal tap is used less often these days.  If your doc wants to do a tap, I would make him/her justify the recommendation, because there is some risk in a spinal tap that there is not in a simple blood test.

--- "also, which is better LLMD, LLND or integrative doctor, functional medicine  to start with ?"

LLMD = medical doctor who thinks more broadly about Lyme diagnosis and treatment.  My doc was an LLMD, an immunologist who had a medical degree (Doctor of Medicine, or MD) from a good medical school and decided to specialize in Lyme and related illnesses.

LLND = a naturopathic doctor who specializes in Lyme.  I had an LLMD, so didn't look into an LLND.  Depends on whether you are keen on herbal treatments (naturopathic) or antibiotics (medical).  I'm big on antibiotics, but I also take vitamins and supplements.  I can see benefit from each approach, and blending them in some way may work, but only if your doc is on board with it, to avoid potential medicinal conflicts.