Confused and need some input please

Hi, I am new to this site. The reason that brings me here is that I recently had blood work done to test for lupus and lyme. The western blot came back positive for lyme. 23KD(igm)reactive & 41KD(igm) reactive. All of the IGG came back non-reactive. I have had persistent mucle and joint pain along with memory loss, brain fog, words and sentences getting mixed up, along with other symptoms for about 2 years now. I do not recall getting bitten by a tick. Within the last month I was diagnosed with fibromyalgia. I was put on 21 days of doxycycline which I finished about 2 weeks ago for the lyme. I went to see an infectious disease doctor today, who said I do not have lyme. He said my symptoms are caused by the fibro. I am not sure that I should leave it at that. He said the doxycycline would have taken care of the lyme if I indeed was exposed to it. Shouldn't the doctor want to run more blood test's. That's it?? I should take his word for it that I do not have lyme. He said he will test again just to make me feel comfortable and will see me again in 2 weeks. Isn't there a better test to be used other than the wester blot. I really don't know in which direction I should go. Would I be better off seeking the help of another doctor?? Someone who specializes in Lyme?? Any info would be greatly appreciated. Thanks in advance

[JackieCalifornia]

Welcome to MedHelp --

Imho (and I'm not medically trained), you have analyzed your circumstances quite clearly and quite well.  Lupus and Lyme are not uncommonly two competing conditions considered by MDs, and it's good that your doc at least considered Lyme -- not all docs do that, on the theory that Lyme is rare and hard to get.

Did you get copies of the lab results?  I strongly suggest you do so, and always keep a copy for your files, because getting stuff later is a hassle and you're never sure you got everything.

There are different labs that do Lyme tests, and some are better than others.  The tests generally (regardless of which lab runs them) are also not very accurate, so that you got a positive test is (sadly) a bonus for you, because at least you have that -- a lot of us don't test positive despite having all the symptoms.

And here's the extra bonus:  the 23 band is specific to Lyme disease, meaning no other disease could cause that band to show up positive.  The 41 band may or may not be indicative of Lyme.  (The website truthaboutlymedisease [dot] com has a nice list of each band and what it means.)  

A more recent infection usually shows positive on IgM, and a longer established infection would show up with IgG -- which is consistent with your history of when your symptoms started (2 yrs ago).  There is no magical cut off date when IgM switches off and IgG switches on, but it's useful to an experienced doc.

Many of us never saw the tick that got us, and never got the famous round bullseye rash -- count me in that group.  So don't let the fact that you didnt' see tick/rash concern you.  What matters is how you feel, and your symptoms line up very well with what many of us report.

Fibromyalgia is a catch-all diagnosis so the docs don't have to shrug and say "I dunno!"  It may be that it's more than one disease process, or several related ones.  The University of Maryland Medical Center website (which I find quite informative) says:  "In the most common type of fibromyalgia, the causes are not known. Physical injuries, emotional trauma, or viral infections such as Epstein-Barr may trigger the disorder, but no one trigger has proven to be a cause of primary fibromyalgia."  In other words:  "We dunno!"

At the same time, the Infectious Disease Society of America (IDSA) has adopted the official position that Lyme is hard to get and easy to cure with a couple weeks of antibiotics, and therefore anyone who continues to have symptoms after a course of antibiotics (commonly doxy, as you were given) has something called 'post-Lyme syndrome', meaning the symptoms hang around after the disease has been eradicated, because the immune system continues to react to stimuli that are no longer there.

No, it doesn't make any sense to me either.

What the IDSA misses is the more current knowledge that Lyme bacteria have an exceptionally long reproductive cycle, and it is during reproduction that bacteria are most susceptible to abx.  This is also true in Hansen's disease (aka leprosy) and in tuberculosis, disease for which standard, accepted antibiotic treatment goes on for extended periods of many months; for example, traditional single-drug treatment for TB was at least 18 months (although newer treatment regimens may shorten that).  Therefore what should control the length of treatment for Lyme is the reproductive cycle of the Lyme bacteria, not what other bacterial infections are treated with, such as an ear infection with a couple of weeks of of abx....in my humble, non-medically trained opinion.

The IDSA will, I sincerely hope, soon reconsider its position on Lyme treatment, but until then, the MDs who do understand that Lyme treatment must last long enough to eradicate the bacteria.  My own treatment was over a year, and due to some other peculiarites of Lyme, it can take longer:  for example, Lyme has the ability to encyst itself inside the body, cloaking itself in a slimy shield that hides it from the immune system.  If you can't find it, you can't kill it.  Thus so-called cyst-busting meds, such as Flagyl (aka metronidazole) are often given in combination with other antibiotics which kill the exposed bacteria.

The IDSA does not believe in this approach, despite published research in respected medical journals to the contrary.  Why?  Because the IDSA is controlled by certain 'scientists' who long ago staked their careers on Lyme being simple and quick to cure, and as long as those 'gentlemen' are on the scene, little progress seems to be made.  We continue to hope, however, that scientific rigor will prevail.

There is also a controversy over what tests should be run and by which lab.  Lyme specialists (often called by patients by the slang term Lyme Literate MDs, or LLMDs) tend to use labs such as IGeneX in Palo Alto or sometimes other labs; nonLLMDs often stick with the regular labs and don't believe in IGeneX (which has a website explaining its testing approach, if you are up for reading.)

Another missing piece of the puzzle are co-infections, meaning diseases other than Lyme carried by the same ticks.  Coinfections are quite common and require separate testing from Lyme and sometimes require different antibiotics as well.  I personally had Babesiosis, which is a protozoan similar to the one causing malaria.  The meds for Lyme (including doxy) don't work against Babesia.  There are 4 or 5 of these 'bonus' diseases, and an LLMD would test based on your symptoms.

----------------------------So where does this leave us?-----------------------------
If I were in your shoes, I would see an LLMD.  It sometimes takes a while to find one, since they don't advertise loudly in some areas due to harassment by local medical boards in thrall to the IDSA line of thinking.  Some LLMDs are MDs, some are naturopaths and other kinds of doctors.  I went with an LLMD-type MD, but it's up to you.  If you search/google "Florida LLMD" you might get some data.  You can also try referral sites at these websites:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
  
Some of these sites may no longer be referring out, but you can take a look.  The first one, ILADS [dot] org, is the main organization of LLMDs.  At that website, under the tab 'About Lyme' is an article called 'Diagnostic Hints and Treatment Guidelines' by Dr Joseph Burrascano.  It is a classic work in the LLMD arena and while somewhat scientific is quite accessible to nonmedical folks like me.  

And when you're feeling better, there is a nonfiction paperback called 'Cure Unknown' by Pamela Weintraub, a medical journalist whose family got Lyme, and it's a fabulous book, weaving personal stories with science and the politics of it all.  My only complaint is with the title:  cures are known and doable.

So now what?  You can go back to the ID doc for another set of tests if you like, there's no harm in doing so.  (You could also pick up copies of the first tests if you don't have them.)  But in the meantime, I'd be finding an LLMD, and I wouldn't necessarily tell your current doc you are doing so, but that's up to you.  The scoffing and sneering and backing slowly away that occurs by a nonLLMD who learns you are going to see an LLMD is really something.  LLMDs are viewed as charlatans.  Some maybe are, but there are many who are fine physicians.  I never hold anything back from my doc, but have learned that Lyme changes things like that.

Please let us know if we can do anything else.  I absolutely agree with your reactions and inclinations.  Stay in touch and let us know how you do, okay?  Best wishes to you! ---

[bhasanewbug]

Hi Jackie, thank you sooooo much for your very detailed response.  I did get copies of the labs that were run.  The ID doctor, said that sometimes the labs will pick up proteins that will cause a false positive for lyme.  He said he deals with this everyday.  I left his office not being convinced at all.  Was a very quick office visit.  He did not examine me.  As soon as he heard muscle and joint pains and that I was recently diagnosed with fibro, he said this is why I am feeling the way I do.  My sed rate for inflamation (inflammation) was at 27.  He said that was not high at all.  I did have a case of ringworm about 3-4 months ago, which I was given oral antibiotics for as well as a topical cream to use.  It went away after 3 weeks.  I did tell the ID doctor this as well.  That is the only close to a rash symptom that I had.  So I will pursue finding a LLMD in my area, it will be hard to do so with the insurance that I have right now.  I lost my job 2 years ago, due to my health issues along with my good insurance.  I really appreciate you responding to me, any other info will be greatly appreciated.

[JackieCalifornia]

Some LLMDs don't take insurance, because having to staff up to handle all the paperwork is expensive and a hassle.  I know of LLMDs including mine who just take a check from you and give you a receipt to file with your insurance co. for reimbursement.  Some LLMDs do take insurance, but the most important thing is finding the right doc.

Lyme patients get the short end of the stick in a lot of ways, including losing jobs and losing insurance.  You're not alone in that.  Hang in there and focus on getting well!  

Let us know how it goes and what you find out, okay?  

[Bama_Lori]

MY   Lyme  Fibromyalgia, chronic fatigue, depression, IBS....all of it...was caused by
hyperparathyroidism,

After 12 years of sickness and treatiments, I finally HAD TO ASK FOR THE RIGHT TEST TO BE RUN TO FIND THE SOURCE OF MY PAIN:  HPTH  a tumor on my parathyroid gland wreaking havoc on my body...every system...is affected.

Ask for Vitamin D test, Calcium levels, and PTH...(parathyroid hormone)....this will tell the story...I do NOT believe in FIBROMYALGIA as a valid diagnosis that anyone should ever have to live with after my struggles with being MISDIAGNOSED>

My levels now:  Calcium 10.4, PTH 97, hypercalceimia, low vit. D (only 11), to top it off I have a cancerous looking nodule on my thyroid seen on ultrasound......

Let me say this.....I have been sick for 12 years....diagnosed with Lyme in 1998, western blot neg.  In 2008 in desperation...I paid for the DNA test from IGENEX to test for LYME again....It came up indeterminate,  Bands 31 and 41...so I went ahead and got me an LLMD I had to travel 9 hours to see....I am still sick after treatment   I was also treated for Babesia with Malarone in 2008.  I felt better for 6-8 months, then the decline again.....Must have been the "placebo effect".

In 1998...  they told me I was cured after two weeks of tetrocycline.   By Jan 2000 my life had gone to crap....feeling tired and achy all the time....I told my gyn I felt like I had PMS 3 weeks out of the month....she did a hysterectomy....put me in surgical menopause at 34....ever since then, all my symptoms have been blamed on menoapause, fibromyalgia, chronic fatigue, depression, IBS, u freakin name it, if there isnt a test for it, thats the diagnosis I got every time with a bag full of new FREE SAMPLE drugs that screwed me up even worse every time.

NOW....fast forward to 2010.   I am now diagnosed officailly with HPTH....there are few experts in this feild I have come to find out....and general doctors will screw you up even worse trying to raise your D and replace lost bone calcium.....wrong again....The ONLY fix is to have the parathyroid tumor removed.

I would not do any more pic line drugs for LYME...you will lose your gall bladder over it will all the antibiotics....

What I have learned is that all my LYME symptoms were actually caused by the parathyroid adenoma.  

I do not believe in any such thing anymore as fibromyalgia IBS and chronic fatigue....those are SYMPTOMS OF DISEASE and I don't care how many drugs, diets or exercise you throw at it, IT will NEVER GET BETTER UNTIL YOU FIND THE SOURCE!  

TRUST ME,,,,I TRIED IT ALL...I MEAN ALL.    The drugs nearly killed me several times for the "depression" rite.   Throw the drugs out and get a GOOD endocrinlongist is what I say.  Now my gall bladder is screwed up from the LYME meds!!

DRUGS are EZ money for the doctors and I feel they have cashed in on my symptom treating long enough dammit.

Please note me back, lets talk....right now, I am currently wanting to go to the Parathyroid center in Tampa...go to parathyroid.com and check it out.  Problem is...I dont have 2.000 for the trip and consultation fee....and I don't have insurance other than the VA....the veterans hospital wants to do a complete exploratory surgery on my neck...remove all my glands, including the thyroid....and put on "normal looking" parathyroid in my arm.....OMG...

What must we do to have these doctors just fix us without causing more damage....This will make me more than likely have low calcium...and no thyroid function......my symptoms will not get better I just know if I let them take everything out....it will be the same or worse....worse I fear.

I have been researching this HPTH for months.....seems like most of the doctors at the VA I have seen have never researched and are only going on OLD standard protocol.......like really OLD INFO>

LET me know how you are now...and whats up...

Sincerely,
Lori M from Alabama

[JackieCalifornia]

Lori

I agree that all possible causes of illness should be explored when current treatment is not effective.  

Given that Lyme is a bacterial infection spreading throughout the US and other parts of the world, and that hyperparathyroidism resulting from a tumor probably has other causes, I would venture a guess that Lyme is far more common than hyperparathyroidism.

Lyme is also known to have effects on the endocrine system, including thyroid function.

Therefore I would agree that anyone diagnosed with Lyme who is not improving should look further, at other infectious diseases (co-infections) carried by the same ticks as Lyme, and at other possible ailments such as you outline.

I would not however go so far as to say that a significant number of Lyme diagnoses are likely due to a parathyroid tumor.  

[lolo72]

Hi My name is Laurie,
I have been ran through the mill of tests for the last 2 years. my symptoms started several yrs ago and were so mild I just ignored them, then they got worse I started with upper GI stuff like GERD then I developed ongoing trouble with diarrhea, last year it got really bad and they blamed the GI stuff on my gallbladder which got removed in may 09. They said the diarrhea would go away guess what I still have it. Then new symptoms appeared like severe anemia, excessive dry eyes (feel like sandpaper) and thirty constantly (negative for diabetes) so my GP did a SLE Profile C for autoimmune disorder called Sjogren's Syndrome my ssa antibody normal my ssb antibody slightly elevated at 1.0 range is 0.0-0.9. She referred me to rheumatology but then decided I had lymes disease instead. So I did the test CD57 and all my IgG and IgM bands are absent but she is still saying lymes here's why. On my test my % cd8-/cd57+lymphs are normal at 3 reference is 2.0-17.0 but my abs.cd8-cd57 + lymphs is 48 range is 60-360 could this be lymes you seem pretty knowledgable what do you think. She wants to start me on 3 different antibiotics all at the same time but I am leary because the bands were all negative please help I am confused.
Thank You
Laurie

[JackieCalifornia]

Laurie, welcome to MedHelp.  I'm sorry to hear what you've been through.  Lyme is a bewildering disease, with different symptoms in different people, and changing in the same person over time.  

I'm not medically trained, so I can't give you advice in that regard, but I understand why you are skeptical of what you are being told.  Here are a few things I might want to consider and/or talk to my doc about, if I were in your situation:

I understand from what I've read that after a Lyme infection has been in place for a while, the immune system gets tired of reacting to the infection and stops making antibodies on the theory that the bacteria must be dead and gone ... tho Lyme has a trick of hiding in what are called 'biofilms', which I envision as a slimy hideaway where the bugs can kick back and the immune system can't locate them.  The usual tests for Lyme don't look for the bacteria, but instead try to detect the antibodies your immune system makes.  If the test is given some period of time after you have been infected with Lyme, there may not be enough antibodies floating around to cause a positive reaction on the test.  That's one reason the tests are an indicator only and not the last word on whether one has Lyme.  Doesn't sound like your doc did an antibiotic challenge, but additional testing after you start treatment might well serve the same function.  Dunno.

CD57 is a marker that LLMDs (Lyme specialists) often look to as an indicator of Lyme, and if the number is suppressed, it may indicate Lyme, from what I read.  It's good news that your doc is savvy enough to look at CD57 levels.

Were you tested for co-infections, which are 'bonus' diseases often carried by the Lyme ticks?  They need different testing and often different treatment than Lyme, and they complicate the diagnostic picture because of the mix of symptoms.  An experienced LLMD can usually ferret out an idea of what coinfections you might have and test for those.  For example:  I had Lyme and babesiosis (like malaria), then got bit again and got Ehrlichiosis (totally different from the other two diseases).  The fun never ends sometimes.

Every LLMD has a different approach as to what and how to treat, it seems.  Three antibiotics sounds like a lot, but may be warranted:  I don't know.  Some docs treat with sustained doses for several months; other docs 'pulse' meds, taking little breaks along the way.  There's no one single accepted approach, and much depends on what bugs you have and how your body tolerates treatment.

Sometimes Lyme does affect the GI system, as it may have done with you, causing your GERD etc.

When I got my second infection with Ehrlichia, my eyes were very affected:  red, swollen, veiny, dry, and when I have a little attack of it now (since I haven't treated it yet), the same symptoms show up again.  So my symptoms maybe match Sjogrens, but I have not been diagnosed as having it.  SLE is short for systemic lupus erythematosus, a systemic autoimmune inflammatory disease not related (as far as I know) to Lyme.  Lyme also causes inflammation, so maybe your inflammation markers are elevated bec. of Lyme.  Dunno.  You could have SLE *and* Lyme, but maybe you just have Lyme.  That's something I'm not qualified to say ... just throwing it out there for your consideration.

Sadly there are few absolutes when it comes to Lyme and its coinfections, so many things are possible, and the story may become clearer as you proceed with treatment.  As long as your doc has an open mind and is willing to change diagnosis and treatment as warranted as your treatment progresses, that's the best you can have.  Lyme is the wild wild west of diseases, so docs are all over the place with diagnosis and treatment.  If you're not comfy with the diagnosis or treatment recommendations, a second opinion might be in order, or at least further discussion with your doc.

I may have raised more questions than posed possible answers with this response.  Sorry if it's confusing, but that's Lyme+.  If you want to read more, I'd suggest going to ILADS [dot] org, under the tab 'About Lyme', and look at Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  It's long, but you can jump around and search through it looking for key words.  ILADS is the main organization for Lyme docs.

Let us know if we can help further ... sorry not to be more definitive.  Let us know how you do, okay?  Best wishes to you --