Going to the doc, please help.

Hi all.  I'm new to this forum, but very active in another.  I have recently had exacerbation of several symptoms that I cannot figure out.  After careful consideration, I am assuming that, no matter how bad menopause is, these can NOT all be cause by it and I am tired of being labeled.  I have had symptoms for many years and when I Googled some of late, Lyme disease keeps coming up. One of the symptoms, facial tics, and actually a few others, are steering me in this direction because they are so unique.  Although I do not remember ever having a tic bite, I used to camp when I was younger.  I had one of the standard Lyme tests years ago, which was negative, but I am wondering how accurate it is.  I really seem to be having more than 80% of the symptoms and I am getting worse daily.  I know of no other disease that can make you feel this bad, this quick.  I am an RN so am fairly knowledgable about most disease processes.  This one is a mystery.

So, can anyone tell me which test is the gold standard with accurate results and, if I AM positive, is the road ahead as awful as I have read about?  I am a full time oncology nurse and cannot afford to lose my job or have my mind affected. On the other hand, I won't last long like this......

[JackieCalifornia]

Welcome to the Lyme corner --

A few quick responses to your questions/comments:

"After careful consideration, I am assuming that, no matter how bad menopause is, these can NOT all be cause by it and I am tired of being labeled."

We hear you.  This happens a lot.  If a doc doesn't understand Lyme, then they reach for the nearest possible diagnosis they DO understand, and in women, 'hormonal' is near the top of the list.

"I have had symptoms for many years and when I Googled some of late, Lyme disease keeps coming up. One of the symptoms, facial tics, and actually a few others, are steering me in this direction because they are so unique."

Lyme is indeed a grab bag of symptoms, and it seems to manifest differently in everyone to a greater or lesser degree.  That's part of what confuses the docs.  Also, because maybe half of those with Lyme also have co-infections with their own set of symptoms, it throws the presentation off even more.

"Although I do not remember ever having a tic bite, I used to camp when I was younger."

Many of us (including me) do not recall being bitten, and the requirement that a tick be attached for X hours/days and a spreading circular rash be seen is misleading in trying to make a diagnosis.  I also suspect that for some/many of us, cumulative re-infection eventually takes its toll:  the immune system suppresses the illness until it is overwhelmed, sometimes by a competing illness that uses up the body's resources, and sometimes by a Lyme reinfection.  I suspect that happened to me ... I recall an odd illness I got on vacation, left me persistenly a bit tired afterward, and the only other symptoms was ... sore soles of my feet when I got out of bed in the morning.  I thought it was falling arches, but it really wasn't arches, it was my whole foot bottom.  Not enough to cause one to suspect an infection, let alone Lyme.  Then a few years later, on vacation back East, I came home very ill, confused, very tired, aching, an odd selection of symptoms.

Twenty docs (of all varieties) and a year later, one kind doc ordered a Lyme test, which came back mildly positive, but she assured me I could not possible have Lyme, because 'I have patients with Lyme, and they ... are ... all near death.'  I took the test result and headed for an LLMD, who diagnosed me with Lyme and Babesiosis (like malaria).  He was surprised that my test results were so positive, because the immune reaction (which the standard W. blot and ELISA tests rely on) fades after a fairly short while, since most infections are eradicated fairly quickly ... but not Lyme.  It is persistent and forms biofilm colonies in the body in which it hides from the immune system.

I was then treated first for the Babesia, and then the Lyme.  Lyme treatment is not the two weeks of antibiotics that are common in other bacterial infections, but nonLLMDs do not recognize this.  Lyme has a slow reproductive cycle, as Hansen's disease and TB do, so lengthy treatment is necessary.  (When Lyme is treated with a few weeks of abx and symptoms persist, nonLLMDs call it 'post-Lyme syndrome', a supposed autoimmune reaction to the now-gone infection.  In fact, it is a persistent and unresolved Lyme infection.  Lyme can also in some of us go dormant for long periods of time, which makes it look like we are cured, but then the symptoms pop up later due to stress or other illness or reinfection.)

"I had one of the standard Lyme tests years ago, which was negative, but I am wondering how accurate it is."

The standard ELISA/W.blot duo are not very good at all, because they measure antibodies, which as said above will fade in a very short time.  An LLMD will sometimes give a short course of abx and retest, bec. the abx stir up the bacteria and they are easier to locate.  A better test, tho also not perfect, is put out by IGeneX Labs in Palo Alto CA -- it looks for Lyme DNA.  IGeneX gets a lot of sneering from nonLLMDs, but then again, so do we the long-suffering patients.  You will need an LLMD to read all the tests with an educated eye, taking into account your history and symptoms along with the tests, which are NOT all that accurate.  You know, like medicine USED to be when docs had to think and interpolate instead of just reading whether the test says + or -.

"So, can anyone tell me which test is the gold standard with accurate results and, if I AM positive, is the road ahead as awful as I have read about?"

I felt no worse in treatment than I did while ill, and actually began to feel better slowly but surely.  Fear not.  

In my nonmedically-trained opinion, you need an LLMD, patient slang for Lyme-Literate MD, to test and diagnose you.  That's what I would do.  Don't be dissuaded by ignorant docs.  

ILADS [dot] org is the main association for Lyme docs, and there you will find Burrascano's treatment guidelines, which will give you the background you need to chart a course, as well as a lot of other good data.  That you are medically trained is a great bonus for you, because you will be able to make educated decisions going forward.  But first you need an informed doc.

Penn. is definitely Lyme country, and there are Lyme docs thereabouts.  I just googled

lyme pennsylvania

and came up with many good possibilities.  Because Lyme docs are at risk from dissident local and state medical boards, many of them practice verrrry quietly.  I don't know how bad the harrassment factor is in PA, but in some states it's to the point that LLMDs cannot be found.  Texas, for instance.  California has freedom of conscience protection for docs, hallelujah, but I don't know about PA, or which part of the state you are in ... you might be closer to another state with a good LLMD, so snoop around on the internet and see what you get.  Also check the ILADS membership list for doc's names ... I think they are accessible there.

Also, you could post a new message here saying "Need LLMD near Scranton" or wherever you are and see if you get a response.  We have lots of members here who don't necessarily post very often, but do check in quietly.

As a cautionary statement, tho, keep your RN antennae up when choosing an LLMD:  because Lyme is the wild West of diseases, there are some terrible quacks out there with some harebrained ideas, but I'm sure you will figure that out without too much trouble.

So ... good for you for continuing to try to figure this all out.  It's cruel that we are so ill and have to then fight the medical profession to boot, but that's the way it is.  Let us know how we can help, and also how you do, okay?  You go!  I was so ill, and I now have my life back.  I wish the same for you.

[JackieCalifornia]

PS a couple more things

-- The twitching you are having may be due to the Lyme bacteria using up magnesium ... they apparently need it in their reproduction process.  As an RN, you know better than I that low serum Mg doesn't manifest till it's WAY down.  I still take a form of Mg with three varieties in it:  citrate, aspartate and orotate, tho I have also taken just malate.  Whatever is best absorbed.

-- The IGeneX test is PCR-based.  IGeneX has a website with lots of good (scientific) information on it that you as an RN will understand better than I.  Easy to find by online search for igenex.  They are VERY nice people there, unpretentious, small company.  NonLLMDs really trash the whole PCR concept, but I have zero idea why.  If you figure it out, let us know!

PCR testing is as close to gold standard as they come.  Not perfect, but better than the antibody tests.  

-- Also there is an interesting website by a doc in Maryland who calls himself LymeMD and posts on his own little page at blogspot.  He posts stream-of-consciousness ruminations about Lyme -- I find it very informative, and with your medical background, you will take away even more than I do.

[mkh9]

Culture is the gold standard. The public health lab in your area can probably do the test but there is no commercial culture test for Lyme though because it is so slow growing. Yes they do have a PCR test (DNA amplification) that sounds ok. I would have to find the sensitivity and specificity of the test to recommend it. The CDC would also probably have more testing but it takes forever to get results back from them when the lab sends out the specimens to the CDC. The first thing as you know, is to get diagnosed. If you have more questions I'll try to help.

[JackieCalifornia]

The CDC is in the tank for IDSA.  Therefore don't expect anything but the same old/same old from the CDC.  

Here are some Q&As from the CDC website I just copied down:
==========================================

"Q -- Is it true that you can get Lyme disease anywhere in the U.S.?

"A -- No. Lyme disease is spread through the bite of a blacklegged tick (Ixodes scapularis or Ixodes pacificus) that is infected with Borrelia burgdorferi. In the United States, most infections occur in the following endemic areas:

    "Northeast and mid-Atlantic, from northeastern Virginia to Maine
    North central states, mostly in Wisconsin and Minnesota
    West Coast, particularly northern California

"Maps showing the distribution of human cases are based on where people live, which because of travel, is not necessarily where they became infected. Cases are sometimes diagnosed and reported from an area where Lyme disease is not expected, but they are almost always travel-related."

===MY COMMENT:  Ticks cannot read maps, and it is the nature of infection to spread where there are not physical barriers (oceans, mountains) to stop them.  In this day and age of wide and fast travel of humans and pets, and even wild animals, it is naive to think that diseases stay isolated.  Ticks can't read maps and don't care where you live.

Remember when AIDS first came on the scene?  The CDC was on TV telling people they couldn't get AIDS unless they were (a) gay or (b) Haitian.  Riiiight.===

==========================================
"Q -- If I have been diagnosed with Lyme disease, do I need to get tested for other tickborne diseases (coinfections)?

"A -- Maybe. The blacklegged ticks that transmit Lyme disease can sometimes also transmit babesiosis and anaplasmosis. Fortunately, Lyme disease and anaplasmosis are treated with the same antibiotics, so if you are receiving treatment for Lyme disease, anaplasmosis will be treated at the same time (***Wormser*** et al. 2006). Babesiosis is a parasitic disease that is treated with different medications. If your Lyme disease symptoms do not seem to be going away after taking antibiotics, see your health care provider."

===MY COMMENT:  Wormser is one of the high-up honchos in the Infectious Disease Society of America (IDSA) who has built his career on denying the virulent and widespread nature of Lyme and its resistance to standard treatments for bacterial infections.  As I mentioned above, nobody at CDC denies the need for 18 months min. antibiotic treatment for TB and Hansen's disease (aka leprosy), but they deny it is needed for Lyme.  The CDC/IDSA folks like Wormser have staked their reputations on Lyme being hard to get and easy to cure, and they won't keep researching and learning.===
=============================================
[further comment from CDC website:]

"There is, however, a great deal of misinformation regarding tickborne coinfections on the internet. The possibility of having three or more tickborne infections or having pathogens such bartonella or mycoplasma (which have not been shown to be tickborne), is extremely unlikely."

===MY COMMENT:  These guys really hate the 'net.  It takes away their authority to decree things.  So Bartonella and mycoplasma have not been shown to be tickborne?  Wrong.  If you google/search "bartonella vector", the first half dozen entries list scientific journal articles in very respected publications (and the CDC, Centers for Disease Control in Atlanta, which usually parrots what Wormser and the IDSA say).  These articles list variously fleas, flies, ticks, and other vectors [carriers and transmitters of disease] as spreading ... Lyme.===

============================
More from the CDC:

"The chance of having multiple tickborne infections depends on your location. Several studies have looked at the prevalence of these different organisms in ticks, though methods and locations are very different. Studies have shown that the rate of coinfection in blacklegged ticks varies by region from 1 to 28%. The most common coinfection in ticks is Borrelia burgdorferi (Lyme disease) and Anaplasma phagocytophilum (anaplasmosis). The frequency of tickborne coinfections in Lyme disease patients from endemic areas ranges from 4 to 45% (Swanson et al. 2006). From 2 to 12% of patients with early Lyme disease may also have anaplasma infection, and 2 to 40% of patients with early Lyme disease may also have babesia infection, depending on the region (Wormser, 2006).

===MY COMMENT:  Gee, I dunno, guys, those rates sound pretty high to me.===  

=================================================
[more from the CDC website:]

"Q:  I heard that if I get Lyme disease I will always have it. Is that true?"

"A:  No. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely.

==MY COMMENT:  Seems to be an accurate answer.==

"Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment."

==MY COMMENT:  Maybe because they haven't been treated properly?==

"These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time."

==MY COMMENT:  To the contrary, Lyme can be cured when treated long enough, just like TB and Hansen's.  Lyme will not go away by itself, but may go underground and quietly wait for your immune system to crash from something else before rising again.  I had my family tested when I was diagnosed, on the theory that we had all been the same places and encountered the same insects.  Yep, positive for Lyme and babesiosis, tho showing no huge symptoms.==

====================================================
CDC and IDSA are Tweedledum and Tweedledee in the world of Lyme.

I would find an LLMD.  

Infectious disease docs (who almost certainly follow the IDSA [Infectious Disease Society of America] standards of testing and diagnosis, which agree with the CDC above.  As a group, they do not know what they do not know.

[mkh9]

Thanks for the info. I was just answering the question about what test is the gold standard. Despite it being the gold standard it is not widely used. They still have a long way to go. Yes, I LOL when you said ticks don't read maps etc. Same goes for viruses, parasites. When I worked in a research lab my supervisor said the bugs don't follow the rules. This is very true.The CDC is based on epidemiology and general info and is generally a good source but they are quite political lets say. Like most government and state agencies.
take care,
mkh9

[JackieCalifornia]

My LLMD didn't use cultures, but I hear you about how it would be strong evidence.

All my quotes and objections above were over my concerns that the CDC is not at all objective, and so to me, everything that comes from them is suspect as having been politicized.

As I reread my post, I thought I should apologize if it sounds like I was yelling at you.  I was yelling at the CDC to wake up.  You think they heard me?

... Nah, I don't think so either.  Oh well.

(Another of the statements on the CDC website is this, that I didn't rant about yet:  "The possibility of having three or more tickborne infections or having pathogens such bartonella or mycoplasma (which have not been shown to be tickborne), is extremely unlikely."  And on what do they base the 'extremely unlikely' conclusion?  In other words, they can't prove it, so they'll just guess instead.  Sigh.)

[mkh9]

No I didn't think you were yelling at me rather that you are "extremely" frustrated with the system and how you were treated etc. On an aside, I am frusted at the system regarding physical therapists (who badly injured me) and about the paucity of information about how to treat simple back problems and so forth. You can't imagine how I was treated in my 20's when I went alone to the ER over and over again because I couldn't get diagnosed for nighttime vomiting and abdominal pain. I went for  8 years and a bizillion tests and different docs and no one could help and some called me a drug addict for asking for pain meds in the ER. I got several doctors doing drug screens on me. One asked when I started taking valium (he didn't read my chart that I had been vomiting blood and they gave me demerol and valium for pain and the a endoscopy the night before). That one hurt me for years. I understand the frustrations people have when trying to get diagnosed. BTW I finally got diagnosed with a migraine variaint and had a positive EEG after all those years. Some doctors still question why I'm on Klonopin and don't believe it is for a migraine variant. But it is and it has worked for almost 20 years. They are so closed minded and put you in a box. I worked in a hospital for about 1994 so I am not biased rather informed. Anyway, sorry for taking up time on RNRit's post.
take care,
mkh9

[JackieCalifornia]

Not at all, glad you posted.  The more the merrier ... well, okay, maybe not 'merrier', but less isolated.  And I certainly don't have ownership of this site!  I was just feeling really cranky yesterday about the Lyme situation.

You've certainly been through the medical mill ... I don't understand how the supposed miracles of modern medicine get so off track, with no way around the roadblocks.  I guess that's why I rant about the CDC/IDSA etc. and their willful blindness about Lyme.  They are only human, but gee golly, so are we!

Glad you have things under control with the Klonopin.  Best wishes --  

[mkh9]

Sorry I ranted about my health problems sometimes I get down about them and it comes out in the strangest places. I meant to say I worked in the hospital system since 1980,  instead of whatever I said, to about 1994. So, I got both sides pro and con about the system. I am now unable to work due to tendonitis in both wrists due to too much pipetting in a biotech and then this back problem. Anyway, thanks for your comments. I didn't know that Lymes was so underdiagnosed and looked down upon as a diagnosis. I think they must have their stats wrong on these studies. I don't know why they would be so biased though except to make their grants look good...Most of the time I do trust the CDC and IDSA for general information. But, I am more informed than some due to the science background so I can filter information that I don't believe or trust. Just because someone writes a publication doesn't mean it is a good one or trustworthy. Oh well, bye for now.
mkh9

[JackieCalifornia]

I think the problem with the Lyme (lack of) diagnosis came about through simple human folly.  The docs who first got interested in it latched onto what they thought they knew and never updated their understanding.  Now they are so far out on that limb that they can't climb down, because they have gained a lot of glory and power in the IDSA.

I guess their moms and dads never read 'The Emperor's New Clothes' to them.  Heh.  

[mkh9]

LOL to the last reply. Yes doctors are very stubborn about change. Look at stomach ulcers some doctors still don't believe that Helicobacter pylori causes them. Oh well.
mkh9