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LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 11/1/2008 11:04 PM (GMT -6)   
Hello All,
 
  First I want to really thank everyone on this forum! Around April of this year, 2008, I was online researching my symptoms and found some comments here that lead me to take a hard look into Lyme.  I live in the San Francisco bay area and was excited to read from you guys about the IGenX lab in Palo Alto.
 
  I'm an RN and for years have been telling people/my patients that Lyme is not here on the West Coast...........wrong!  It's alive and well in every county of California.  And so is medical ignorance of the disease, as I've painfully demonstrated. So I pledge to be an active advocate for those with Lyme and help educate the medical community so that less people will have to suffer.
 
  Anyway, my symptoms started Dec 07 with undiagnosed pelvic pain. I had every lab and diagnostic test done. The pain lasted a few months then went away.  End of April 08 I started having fatigue, dizziness, brain fog, memory loss, concentration issues, creepy skin sensations (notice the use of medical terminology), felt drunk all the time, weight gain, etc, etc. that all increased significantly by mid-may.  At first I thought I was just really out of shape. Then one night at work, I almost passed out having seizure like symptoms.
 
  Of course I had to try to self-diagnose, so I went to the best medical resource on earth - the WWW.  I found the list of Lyme symptoms, read up about what tests work and which don't and headed for my PCP (primary care provider).  It was obvious right off the bat that he was unwilling to think outside-the-box and insisted on taking another route.  After seeing him and having all the blood work come back negative or normal, I told him I wanted a neurology referral. The neurologist considered MS and ordered an MRI.  THEN, before I could mention it, she told me about this new lab, IGenX, that she just heard about that does Lyme testing. (side note: this is an answer to a very specific prayer before walking into the office).  The next day my husband drove me to the lab for testing.  July 3rd I recieved the positive Lyme results.  I got my new PCP to get me started on Doxycyclin (which ended up being the wrong dose and gave me severe sun reaction).  It then took me 3 weeks to find a LLMD whom started me on Biaxin and ordered more tests than I've had total my whole life. I'm 42.
 
  I'm convinced had I not been in the medical field and knew how to get what I needed, I would still be undiagnosed.  And it still took me 8 months of symptoms (3 months of serious symptoms) to get a diagnosis.  I feel very fortunate after hearing most of your stories of years and years of wrong treatments and diagnosis.  So I'm truly humbled by your testimonies!
 
  My co-infection panel came back all negative, but LLMD thinks I'm Erlichiosis + which I agree with. Here's my lab results:
WBC's - low and dropping.
Hemaglobin - low
Magnesium -low
Vitamin D - High
testosterone - low
Dysbiosis: Low stomach acid, yeast, bacteria, tape and round worm.
Gluten sensitivity (this really sucks!!!)
Lyme + (IGenX)
Food allergy reactions to: chicken, beef, soy, corn, rice, potato, tomato, almonds, banana, orange, eggs, milk, oats and wheat.
heavy metals: negative
bone scan: not done yet, have had two root canals in 2 years.
 
Advice needed:  what about physical therapy? does it help? What immune boosters are helping people? How long might this fatigue go on? Will I realistically be able to go back to an 8 hour job? Or will 4 hours be a good start?  (I've been off work 3 months and hoping to go back in 2 more months). Will the gluten sensitivity resolve itself? What about alternative therapy's: Rife, salt/Vit C, etc?
 
I've read the book "Everything you need to know about Lyme disease", but it doesn't really give any examples of life after treatment or practical experiences. Other than her own and her family's of course.
 
So I'd really like to hear how long others were on medications, did you use IM meds that made a huge immprovement, how long you were unable to work, how you did when you returned to work,  etc.
 
Med's I'm on:  Biaxin, hydrochlorquin, magnesium, Immune therapy, probiotics (3), multi vitamin, B complex, Iron.
 
Med's finished:  Diflucan, Nystatin, another antifungal I forgot the name of.
 
Sorry this is so long. Thank you for any suggestions and advice.
Lisa Lupner RN 
 
 
 
 
 
 
    

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 11/2/2008 8:20 AM (GMT -6)   

Hi Lisa, welcome to the board!

I am sorry you have Lyme and Ehrlichiosis, but it is good you have been diagnosed so you can get treated.  I wonder why your doctor is not treating Ehrlichiosis first?  Are you seeing Dr. S.?  Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective.  From what I understand, Doxy is the best choice for Ehrlichiosis, and it can be effective for Lyme also.  Doxy can cause severe sun-sensitivity.  I am sorry this happened to you.

You have probably seen the symptom list, but I will post it just in case you have not seen it. You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Are you aware of the Jarisch-Herxheimer Reaction (herx)?  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  Although this reaction can vary individually, many people experience this at the beginning of treatment and every three to four weeks.  

During treatment, it is good to document your symptoms daily.  One way to do this is to list the main symptoms you have each day with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It is important to do things to strengthen your immune system and detox.  Eating healthy, drinking a lot of water, and exercising whenever possible is very important.  There are many things you can to to detox including exercising, detox baths, saunas, and/or steamroom and taking certain supplements such as Milk Thistle and NutraMedix Parsley.  If you do a bath or sauna, try them for just a few minutes at first until you see how you react.  It may make you herx.  Sometimes Lyme disease can cause elevated liver enzymes.  As long as your liver is healthy, taking Milk Thistle can help.  If you click on the search button on the right side of the blue bar at the top of this screen and type in "detox" many posts will come up that you can read.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  He also lists diet, supplement, and exercise recommendations.  Besides the book  "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner,  I also recommend the book "The Lyme Disease Solution" by Kenneth B. Singleton MD.  I think it is very comprehensive.  "Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections" by Stephen Harrod Buhner is a good book about alternative treatment.

As you know, there is a lot of ignorance about tick-borne illnesses among the medical community.  The million dollar question is why.  No doubt that many medical professionals and/or their families across the county are also being affected by this.  We can only hope they will use their experiences to educate others in the medical community.  Have you heard of the Lyme documentary "Under Our Skin?"  You can see the trailer at http://www.youtube.com/watch?v=sxWgS0XLVqw  You can purchase the DVD on their website at http://www.underourskin.com/

I hope your treament goes well.


maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 11/2/2008 2:12 PM (GMT -6)   
LupnerRN
Welcome aboard. Sorry to have to meet you this way. This is an excellent site with information you can't find everywhere else. Don't be afraid to ask any question you wish, there is always someone available to assist.
Maggie

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/2/2008 4:06 PM (GMT -6)   
I have a question for you. You said your co-infections came back clear, then why the diagnosis of erlichia? Thanks D

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 11/2/2008 10:05 PM (GMT -6)   
Dowa, I think Dr. M is thinking erhlichia because of low white blood cell count and the come and go of my symptoms. erhlichia is a white cell buster. I should ask on my next appointment more specifically about that. I figured that the Biaxin hydrochloroquin combo would work for both.

ticker, thanks for the detox info. I'll try it for sure. And yes I've heard about the "Under Our Skin" film. I've ordered it and planning on having a few presentations here in the bay area. Including one for my coworkers at the hospital I work at.

thanks for you advice and comments!

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/3/2008 3:57 AM (GMT -6)   
Hi LupnerRN! Welcome to the forum! I hope your recovery is swift and complete! It's always great to hear about Informed medical personnel that can help change the tide for lyme recognition.

We are from CA too, and travel to the bay area for treatment. Please email me if you would like to compare notes. I am curious who you found to treat the lyme--an LLMD? I did not recognize the initial, so I think we see someone else.

Best wishes. bablymers mom
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