Is this lyme disease? Part 4! REAL final post!

[DeeMarieee]

Im very sorry this is so long. If you took the time to read this, I very much appreciate it. Im in tears right now because I just feel so hopless and afraid. Everyone is telling me I am not dying and that Im fine, but they dont know what I feel every single day. I do not feel Fine, in any way. My boyfriend tells me to 'suck it up' but I cant! Im scared for my life every second of every day. My poor mother is stressed out because she is trying to do eveything she can for me including taking me to see all of these doctors. Thank god for her great insurance. I dont know what to do anymore. I felt perfeclty FINE AND NORMAL up until May of this year! I am definitely not myself anymore. Everyone says it and I feel it. Im a totally different person and not in a good way. I wake up everyday hoping this is all a terrible nightmare and I will feel like myself again. Im begining to lose all hope. So sorry these are all out of order!!! I am copying an pasting. Hopefully you guys arent too confused :(

[mojogal]

I have learned to carry my Igenex test results in my purse in case I wind up in the ER or a doctor's office to prove to them I am CDC positive for Lyme and Bartonella. Very sad to have to do that.

[JackieCalifornia]

Good for you for plowing ahead and sorting things out.

Did the doc who ran the test give you a full copy of the results, not just a summary page (or none at all)?  I think you are entitled to full copies of all the tests run, not just a summary page of the results.  What looks like a negative response on these basic tests may look very different to another doc.

Docs who are not Lyme specialists often use the older, basic, and often not-very-accurate ELISA and/or Western blot tests, and I would not be surprised if your doc ran one or both of those on you, and also not surprised that the test(s) came back negative.  These ELISA/W.blot tests rely on your immune system reaction to the presence of Lyme bacteria in your blood:  if your immune system doesn't react in the test, then the test is said to be negative, meaning 'You don't have Lyme.'

But wait!!  These older tests (ELISA/W.blot) react to indicate positive for Lyme disease only when your immune system is producing antibodies to fight the infection.  That makes sense in many infections, but Lyme bacteria have a special trick:  Lyme can (and often do) suppress your immune system and prevent it from making antibodies against Lyme.  Result:  no antibodies are found in your blood, which the test says means you do not have Lyme -- but because Lyme can and does prevent your immune system from producing Lyme antibodies, the 'antibody' test often comes back negative, meaning 'you don't have Lyme.'

Docs who are not Lyme specialists often (even usually) do not understand this at all, and the doc can conclude as yours did:  "your test is negative, therefore you do not have Lyme."

Well ... the doc can well be wrong, for the reasons stated above.  There are other tests (especially one called a PCR test, offered by IGeneX Labs) which do not work the way the the ELISA and Western blot tests do.  The PCR test does not measure your immune system reaction, but instead looks in your blood for DNA (genetic material) of the Lyme bacteria themselves.  The PCR test is a direct test, not an indirect test relying on your possibly suppressed immune system.

The PCR test is relatively new, and docs are still taught to believe that the ELISA/W.blot tests are just fine, thank you, so patients often get the same response you got:  the ELISA/W.blot test(s) are negative, therefore you do not have Lyme.  The genetic PCR test is often not used at all, because the older docs have been taught that the ELISA/W.blot tests are just fine.  Uh, no.  

Your current doc may or (more likely) may not want to run a PCR test, because many many MDs believe that the ELISA/W.blot tests are just fine.  

What to do?  I'm not medically trained, but I did have Lyme a few years ago, and after seeing 20 (!) MDs and getting only negative tests ('you do not have Lyme'), I was finally tested with the IGeneX PCR test, which came back strongly positive for Lyme.  I was then treated for Lyme, and now some 5 years later, I am still clear of Lyme disease.

In your situation, I would find an LLMD (patient slang for 'Lyme-literate MD'), who would likely use the IGeneX PCT test and go from there.  You don't say what part of NJ you live in, but you can email to ILADS and ask for name and contact information near you ('within 20 miles of Newark NJ' or whatever is accurate') and then get an appointment for a work up.  Search online for 'ILADS' and you'll find them.

Many Lyme specialists do not take insurance, to avoid hassling with the insurance companies who think Lyme specialists over-diagnose Lyme, but you can pay the Lyme doc yourself and then submit your paid bill to your insurance company.  Often the ins. companies will reimburse you at quite a high rate.  All this is part of the politics of Lyme, and it's just the way it is for now.

You can also search online for something like -- LLMD Newark NJ -- or whatever city you are near -- and see what pops up in the search results.

Other search terms such as  -- NJ lyme disease -- will bring you to many sites and links online.  Lyme is a relatively new illness, and the medical community is still confused, but finding a good LLMD is definitely worthwhile and the way to go.  It took me many MDs to finally run a Lyme test that was positive, but Doc #20, who saw the positive result on my Lyme test, told me I could not possibly have Lyme disease (!).  I knew better tho, and took the test results and went to an LLMD without delay.  I was tested further and treated for months with specific antibiotics, and now 5+ years later, I have no signs or symptoms of Lyme or any co-infections.

It all sounds crazy, I know, but that is where the medical community is stuck for now, though things continue to improve.  I'd suggest you go to the ILADS website and ask for referral to an LLMD near you, and also post a new message here to say, 'Need LLMD near ________, NJ.'  Ask a friend to help you if you are not feeling up to the calling etc.  It's worth it to be well again.

Many Lyme docs do not take medical insurance, but the doc and the pharmacist will give you detailed receipts to submit to your insurance company.  Insurance companies don't usually balk at this, and they usually reimburse a large amount of your expenses.

Keep us posted!  All good wishes to you --

[DeeMarieee]

Thank you for commenting! I got blood drawn to get tested for Lyme a few days ago and my doctor called me today and told me it was negative.. Now Im really bummed because I was so sure I had it and thats what is causing these strange and horrible sensations.. but apparently I dont have it. My question now is do I go get a second opinion? Or get tested again somewhere else ? I didnt go to a Lyme specialist, I went to my regular doctor and told her I wanted to get tested. I don't know where to go from here.. I dont want to give up. I need to figure this out.. What should I do?

[grdner]

DeeMarie,
You aren't dying - but I'm sure it truly feels like it. This darn spirochete can influence so many different things and make us feel so bad, with no outward signs.  Hang in there and find yourself an LLMD to help you.  Normally I wouldn't wish Lyme on anyone, but if you do have it then you can get started on treatment.  A light at the end of the tunnel, even if it's a long tunnel...

I know what you mean about looking fine but feeling terrible.  One day I was having some difficulty standing up and my coworker friend said to me that she was sorry my knees ached.  I said, it's not an ache exactly, it's more like someone drove a pickax into my knee joints and then poured boiling tar in after. (But I looked fine!).

I was able to help my body help itself at least a little by cleaning up what I put in it.  If you can find the strength to resist the cigarettes and alcohol your body will at least not have to fight those toxins too.

Good luck and keep us posted -

[mojogal]

In addition there are many great llmd in NYC. You are lucky to have parental support. I wish you the best. Let us know how it goes and BTW after 3.5 years of treatment I am still a nervous wreck at times. Part of the illness.

[JackieCalifornia]

Sorry to flood you with all this, but you might find some of it helpful.  Below is information from the web about Lyme resources in the NJ area.  Patient-focused groups can be VERY helpful in finding a good Lyme doc nearby.

Below are bits and pieces I found in a quick search for

  -- lyme new jersey --

Don't feel you have to read any or all of it, but it will give you an idea of the kind of resources near where you are.

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    Lyme Disease Association, Inc.
    www.lymediseaseassociation.org/

In June, Lyme Disease Association President Pat Smith presented a powerpoint, How A Tick Can Make You Sick, to the entire Wall NJ Intermediate School ...

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‎Doctor Referral System - ‎Doctors - ‎What is Lyme Disease? - ‎Photos
►
New Jersey - Lyme Aware
lyme-aware.org   /new-jersey.   html

He continues to discuss the disgrace of a few in the Infectious Disease Society of America who are an embarrassment to the medical society.

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Lyme Disease Association, Inc. (LDA)

https://www.   facebook.   com/LymeDiseaseAssociation

Lyme Disease Association, Inc. (LDA), Jackson, New Jersey. 6460 likes · 457 talking about this. You're great because now you're a fan of the Lyme...

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New Jersey - The Lyme Disease Network Support Groups ...
***************/    SupportGroups/    UnitedStates/    NewJersey/

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to ... 43 Winton Road, East Brunswick, NJ 08816 USA

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-- Support Groups - New Jersey Lyme Resource

https://sites.google.com/site/newjerseylyme/support-groups

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-- Lyme Disease Support Groups ... ten years in a church rectory in downtown New Brunswick, NJ near a well-lighted parking garage. ... Lyme Disease Association.

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-- Lyme Disease cases surge in Burlington and ... - NJ.com
www.nj.com/mercer/.../lyme_disease_cases_surge_in_bu.html
NJ.com

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-- Jul 25, 2011 - According to the Lyme Disease Association, a Jackson-based national nonprofit organization, New Jersey ranked fourth in the country for Lyme ...

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ILADS - End Lyme disease epidemic through education ...
www.ilads.org/

Apr 22, 2015 - The International Lyme and Associated Diseases Society (ILADS) has criticized the Lyme guidelines review panel of the Infectious Diseases ...
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[JackieCalifornia]

When you go see a Lyme doc, print out ALL these posts and take them to your Lyme doc to read.  

One of the most annoying aspects of Lyme is that it messes with memory and concentration, so it gets hard to give a good history to a doc.  A Lyme doc knows that, so taking along your notes and history in written form can be very helpful to the doc.

One of my most common responses to questions from a doc was, "I don't remember."  That's pretty common in Lyme, so just outsmart the illness and take copies of what you have written on this site to hand to the Lyme doc.  Some docs will say, 'Oh, just tell me so I don't have to read it all' -- which is too bad if the doc doesn't understand how forgetful Lyme can make someone with Lyme.  

Any doc who is NOT interested in reading your notes is missing something important, so compensate for it by reading your notes out loud to the doc, or at least refer to them as notes like you would for giving a speech.

I would take diary/notes to my appointments with my Lyme doc, and I would give the binder of notes to the receptionist when I arrived, and the receptionistwho would give them to the doc ... who would go to his office and read my notes (took maybe 10-15 minutes) and THEN would call me into his office to talk and decide on next steps.

You will see the term LLMD, which is patient slang for 'Lyme-literate MD', meaning a doctor who understands Lyme better than docs who think Lyme = the sniffles.  If you find yourself with a doc who reacts like the doc you've already seen, then I would consider finding an ILADS-member MD ... it's a better bet to have an open-minded doc.

[JackieCalifornia]

and PPS, Lyme docs can be kind of expensive if they are not in your insurance network, but don't worry about that -- your insurance might cover some or all of the testing and treatment, and if not, then there are Lyme charities that can help those who don't have the $ to front to the docs.

What's important is getting properly diagnosed and treated.  After that, life starts looking a lot better again.  I've been there, done that -- it was worth all the hassle, truly truly truly.

[JackieCalifornia]

and PS ... feeling anxious and lost and confused is partly due to the biochemical effects of your body and your emotions reacting to the biochemicals the Lyme bacteria put in your body and mess with you.

It is NOT you:  it IS an infection that can be treated with the right antibiotics, chosen by a wise MD who really understands Lyme.  Go for it!  We're here --

[JackieCalifornia]

Thank you for posting all this -- it's very valuable information for you (to have a record of your symptoms and how you feel over time) and also extremely important to print out and take to a doc who would understand how all this fits together.

Do you know the old story about 'The Elephant and the Blind Men'?  It is about a group of blind men (duh!) who encounter an elephant for the first time, and as they touch the animal, each of them has a very different impression of what an 'elephant' much look like:  

    -- the man who touches the elephant's trunk says an elephant must look like a snake;

    -- the man who touches the elephant's legs thinks and elephant looks like a tree trunk;

    -- the man who touches the elephant's tail thinks an elephant looks like a rope; and so on.  

That story could also explain why today's MDs are so confused about Lyme disease:  many different symptoms that affect different people different ways, leading to confusion among the docs and continuing misery for the patients.

I had Lyme disease for the better part of a year before I was finally diagnosed with Lyme and another infection that came from the tiny tick that bit me and gave me Lyme.  Once I found an MD who truly understood Lyme and other infections that the 'Lyme' ticks often carry, the confusion stopped, a diagnosis was made based on symptoms and tests, I was treated with antibiotics, and after some months of treatment, I felt better and am completely well now, several years later.

People who have not had Lyme often do not understand why those of us with Lyme are so ill while looking 'so healthy'.  Well, I would just ignore that view from people who don't understand, and get myself to a Lyme specialist MD for an exam and some testing.  Lyme will not just go away by itself, and there are too many docs who don't yet understand Lyme or how to diagnose and treat it, so just know that and keep looking till you find a Lyme doc who understands the situation.

Summer is prime time for Lyme infection, and you are right in the middle of that time line.  I just searched online for

                     new jersey lyme disease association

and found lots of leads.  There are several organizations that will pop up in a search for the words above.  Many states and areas have associations focused on Lyme, and those are great resources to help you find an MD who really, really, really does understand how you are feeling and what to do about it.

Unfortunately, infectious disease MDs often do *not* understand Lyme, and there is a lot of friction among MDs who DO understand Lyme and those who only think they do.  That's why finding a patient-oriented group to guide you to an MD who truly understands how to diagnose and treat Lyme.

I know this is the last thing you have the energy for, but once you find a group that can help guide you to a nearby Lyme specialist MD, things will start to work themselves out.  Let us know how you do, okay?  It took me 20 MDs before I finally got a Lyme diagnosis, but I didn't know when I started seeing various docs that I might have Lyme.  Already suspecting you have Lyme puts you way ahead of the curve in getting to the right doc.

Please keep us posted -- we've all been where you are now:  miserable and unsure of next steps.  Find a Lyme patient group, and see how it goes.  If the first group doesn't have good leads to nearby Lyme specialists, then keep looking.  It's definitely worth the effort.  And the internet is your friend in the search to be well again.

Keep us posted, okay?  Take care --- sending you all good wishes --