Tuesday, November 13, 2012

Positive Lyme Test Finally! & Hormones Influence on Lyme Test Results

Part I

Ever since I first got very sick four years ago, the lyme question has haunted me.  Although my intuition told me I had it and that lyme was the silent, insidious bacteria inside of me that was keeping me from getting well, my continued negative test results made me doubt.  The negative test results also kept my doctors from treating me, except for one doctor in the beginning.  But that treatment didn't get me 100% well.  I have, at this point, probably seen more than 25 doctors.  Even my current doctor, who is amazing and treated me for babesia, never treated me for lyme.

But still, I just keep having a hunch that the current state I am in, though well, isn't good enough.  I am also one of the lucky ones who has amazing family and friends around me, "you know who you is," who keep encouraging me to listen to my intuition and to keep seeking answers.  So many don't have this support which makes them even sicker, because being denied one's own reality is maddening.

I read about Advanced Laboratory Services because another lyme patient tells me about it.  The best, most informative information has come to me mostly through other patients.  I had asked my doctor months ago to get these lab test kits and he did it right away, even though he hadn't used them with anyone else.  I am so appreciative that he is so open minded.  I don't remember why we didn't test me then, but I think we got side tracked because I asked to be given something for bartonella, thinking that I was possibly dealing with that.  Also, because I am relatively functional about two weeks out of every month now, it's easy to get distracted and forget how much pain I'm in during a flare.  Advanced Laboratory Services test also requires that one be symptomatic for the blood draw and so each time I didn't get tested during a flare, I had to wait for another one!

(A sidebar regarding lyme tests:  lyme tests are UNRELIABLE.  The two tiered standard approach with the ELISA and Western Blot are known to often return FALSE NEGATIVES.  These are the two tests I was tested with many times in the beginning.  What these tests are looking for is whether or not the patient has created antibodies to the lyme bacteria.  However, depending on the timing of the test, the patient's overall immune system and other factors, oftentimes the result will be negative.  My weakened immune system, hormonal fluctuations, adrenal fatigue and timing of the tests I did previously all contributed to negative test results.  Even Igenex, the gold standard for lyme tests which also tests for the antibodies the patient has made in response to the bacteria (not the bacteria itself), returned a negative test for me.  Advanced Laboratory Services tests for the bacteria itself.  And, I had blood taken while I was symptomatic.)

The last flare I have is incredibly painful and debilitating.  I am on the couch for days and it hurts to just breathe.  I can't eat for three days either because I am so nauseated.  This is really hard on the body too because any weight I've gained during my "healthy" days I immediately lose and thus lose strength.  I will myself to get to the doctor so he can do a blood draw while I am so sick.  And hallelujah, the test comes back POSITIVE.  I have read that a woman's menstrual cycle (hello, I have been saying this ALL ALONG) influences not only her flares but the probability of a positive or negative lyme test.  There is a great article about Dr. Marylynn Barkley, out of UC Davis who did research on hormones and how they influence the lyme testing that you can read here - Marylynn Barkley, Lyme Fluctuations, Tests, and Hormones.   If you are a woman who is experiencing painful lyme symptoms that are flaring around your period, or you feel crazy and your doctor isn't listening to you, read this.  And no, you aren't crazy.  You are sick and need to be treated.  LISTEN TO YOUR INTUITION.  I have been kicked into "early menopause" but now, because of this positive test, I can't help but wonder if I get treated and actually get better if my hormones won't regulate themselves.  And I am sending a copy of my positive lyme test to all of the doctors who told me I was wrong.

Part II - the protocol to eradicate these nasty bugs from my body...coming soon! 

Monday, October 15, 2012

Neurologist, Low Level Light Therapy, Monthly Flares & A Mammogram!

I go to see a neurologist because of the horrible nerve pain in my shoulders, neck and head.   He is nice enough and listens as I try to give him my history, but about half way through he checks out.  I know it's overwhelming for a doctor to hear my history because it's long and detailed, but never a good sign.   Despite having spent the last three years DETOXING my body from whatever tick borne illnesses I was dealing with, the antibiotics used to rid my body of said tick borne illnesses, heavy metals, viral infections etc, his recommendation for the headaches is botox injections.  Um, yeah, no thanks.  He does suggest an MRI, which I get, and I am happy that it is normal.

I'm doing low intensity light therapy now.  My doctor recommended it to help heal the cells in the muscles of my shoulder and neck.  Within two sessions the severe pain I was dealing with is going away.  One thing that has drastically changed is that when I used to turn my head from side to side it would creak and crack.  I also lost the ability to tip my head back because of the muscle pain.   After a few sessions my neck doesn't hurt like that anymore and I can do yoga poses that involve moving my neck around without pain.

Despite getting stronger on a daily basis, I am still having monthly flares.  I'm on progesterone and estrogen so we are not sure still if it's hormone influenced or lyme flaring in a four week cycle.  I am going to get tested at Advanced Laboratory Systems (ALS), which does a direct culture for the spirochetes, as opposed to testing the antibodies that one makes to the spirochetes (all of the other tests).  From the ALS site it says that it is best to draw blood for this test when one is symptomatic, so I have to wait until my next flare to do so. 

I had my first mammogram during all of this and unfortunately there were microcalcifications.  From Wikipedia - "Microcalcifications are tiny specks of mineral deposits (calcium), that can be scattered throughout the mammary gland, or occur in clusters."  Now they want to do a biopsy.  I wonder how many other women fighting tick borne illnesses have had this happen and if the chronic inflammation  from the bacterial infection contributed to these calcifications?  Menopause can also apparently bring these on, and because of this illness I have been kicked into early menopause.  None of the doctors I've asked has an answer as to what really causes these.  This seems to be a theme in my journey. :(

Wednesday, August 15, 2012

I am still in the lyme lands. Since treating babesiosis last year I have gotten better, but not well. I live in lyme limbo, well enough to get through my good days, but cycling every month with bad days of incapacitating flares of nerve pain so deep I can't breathe. The symptoms have completely changed their nature; where I had classic throbbing migraines before, I now have headaches that start in my nerves. I also now have lower rib aching, spontaneous scabs on my body, eye, scalp and all over body itching, vagus nerve pain and thus a gag reflex and hot flashes.

Dr. X and I are still doing a multi-pronged approach. Finally my hormones are being addressed. After a month of testing my estrogen and progesterone every week, it is determined that I am at levels so low they are almost unable to be registered. I had been asking doctors to test me every week for a month since I first got sick 3 years ago. The endocrinologist tells me I am in early menopause. I don't entirely believe this though. I think it's because of being so sick, all of the meds I've been on, and the fact that I've lost 20 lbs. because of the illness. I'm doing estrogen cream, along with the progesterone, and am to start supplementing pregnenolone (the mother of all hormones) soon.

A friend in the know tells me she thinks I have bartonella. I suspected this a few months ago because of the rib pain, but like every step in this journey I am at first in denial and then finally acceptance. It is now time to treat the bartonella. Dr. X. prescribes Cipro, but I am STILL battling candida so I can't do antibiotics again that will wreak havoc on my gut. I have upped the intake of pro-biotics and am still doing grapefruit seed extract. An herb, houttynia, is recommended to me to battle bartonella.  I try Byron White's A-BART, and do only 1 drop.  However, I react strongly two days later and stop taking it because it throws me in to a flare. 

I see an immunologist who guesses that I am having a reactivation of the Herpes Virus 6 (the virus that gives one chicken pox). I had a bad case of chicken pox when I was younger, so this makes sense. She tests me and it does come back positive but for the IgM, which indicates previous infections.  I really think the Bell's Palsy (7th cranial nerve inflammation), the Herpes Virus, hormones and tick disease are all playing off of each other, and it is just a domino effect of events.  My eyelids are inflamed sometimes and my eyes feel sticky, particularly before a flare.  I remember when I had bell's palsy my left eye felt that way.  I think either the tick borne disease, the herpes virus or both are now in the nerves in my neck and head and during a flare this is where the pain is.

I use zomig nasal spray (which is for migraines) during a flare.  It is now giving me a bad rebound headache that is almost worse then the initial headache I took it for.  Also, I have found that I can't let any of the spray run down my throat into my stomach.  It is toxic and if I let any get in my stomach it makes me almost vomit a couple of days later.  Need to find a neurologist to talk to about alternative therapies for these nerve headaches.

The journey continues.