Saturday, November 14, 2009

Bells Palsy or Lyme

This photo was taken six months after I came down with Bells Palsy before I knew that I had Lyme, they said I would NEVER recover, but I truly now have about 90% of my face back. I did Alot of acupuncture twice a week, I was barely able to make it to the appointments due to exhaustion. I don't have many photos of myself during this time because I wasn't sure myself if I would recover. It took about 6 months for me to train myself to blink again, the blink was slow and delayed but now almost 3 years later my face it not as swollen and if I don't smile really big you wouldn't really know, but one eye is still smaller now and I am still working on it.

60 % of people with Bells Palsy actually have Lyme - I knew mine was different when I first got my Bells Palsy, the extreme fatigue, pain, etc. was not normal. When I first came home from the hospital. I felt as if I had bugs inside of me, it felt as if I was part of a germ warfare experiment......turns out I was pretty right on.

The doctors were not able to diagnose it, I had three false negative tests....most of the current testing available is worthless, unless you got to the right lab. I first requested my blood go to the right for the most accurate testing (right from the beginning) the unfortunate thing is the lab tech decided to send it in to a more convenient cheaper lab.

A year after I got the Bells Palsy I came down with Graves disease, I am really a healthy person ( I know that seems hard to believe but I am, that was another reason none of this made sense) and that is why when they told me that I had another problem it just didn't feel right, I knew that there was another bigger problem and these were symptom of something else. Before I knew what was wrong with me I was traveling again I thought my fatigue was just my body trying to recover.

In 2008 when I returned from New Orleans and North Carolina I mentioned to my class travel experience along with why my face still was disfigured etc. when one of my students mentioned that I might have Lyme. That finally felt right, I knew that had to be what it was, that is when I started my journey of diagnosing myself. I ordered a test kit from the lab and started using my doctor as a vehicle to get things done, my doctor was at such a loss she was willing to do whatever I wanted. Most doctors around where I live don't believe it is here they think it is only on the East Coast...anyway long story.

I felt like a crazy person, I was doing much better but still pursued the testing etc. It took another two months to get the results, a month for the test and another month to get it read, the doctors, neurologist, endocrinologist etc. couldn't read the test. so the only person I trusted then was the director of the lab. I got a copy of the results myself, my current doctor thought the test was negative but I saw one small positive and asked my doctor what that was, she didn't know.

I felt crazy because I finally felt good but was still pursed this testing thing. I recognized that there would have been no way I could have done it while in the midst of all of my fatigue.

It seems perhaps that people that have Bells Palsy without severe pain and fatigue just have Bells Palsybut there are certain signs to look for that help show the difference. Anyway everything is a blessing if you choose to look at things that way and now I can help others.

Since then they have published a few of my articles in the local papers to help make our community become more aware.

19 comments:

  1. Birgit, My heart goes out to you as we know the struggle with a Lyme disease diagnosis. My son, now 24, was diagnosed as a six year old. Thankfully, we stumbled into the care of the wonderful Dr. Audrey Stein Goldings, an early voice of warning to Texas of the disease back then. My son got aggressive treatment fairly early and, thankfully, is now a robust, healthy, USNA-Annapolis grad serving our country on the U.S.S. Alaska. He was seriously ill for over a year, but it doing well now! Please know you will be in our prayers for a full recovery. I am thoroughly enjoying your wonderful book/dvd. Your beautiful artwork is inspiring!!

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  2. Dear Devoted Mom - thank you for your comment. What an amazing story about your son ....What an eye opening education this has been. I am off of my IV picc-line that I had since April and all other antibiotics that I have had since 2008. I understand about aggressive treatment and I believe that is what it really takes to deal with this little bugger. - I am really hyper aware of bugs and germs now. I have just finished a 8 week program of detoxing from everything what another little adventure that was headaches, joint paint etc. but everything seems to be settling down again. I will probably do another round of detoxing after the holiday - From what I understand you need to do whatever you can with the treatments then try to get your immune system to wake up and kick in again.

    I am very happy that you have enjoyed the book - Happy Painting!!
    Birgit

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  3. You mentioned that there are certain signs to look for when you have bells palsey besides pain and fatigue? Could you please tell me what they are?
    Rita

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  4. These were my main symptoms
    Headache, migraine
    Pressure in the head
    Tingling of nose, cheek, face
    Twitching of facial or other muscles (motor tics)
    Jaw pain or stiffness (TMJ-like problems)
    Sore throat, swollen glands
    Increase in allergy symptoms
    Unexplained hair loss
    Pain in ears
    Ringing, buzzing, tinnitus
    Oversensitivity to sounds
    Upset stomach (nausea, vomiting, pain)
    Bone pain, joint pain, joint swelling, or stiffness
    Shifting joint pains
    Drooping shoulders
    Shortness of breath, can't get full/satisfying breath
    Diminished exercise tolerance
    Burning or stabbing sensations in the body
    Numbness, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Light-headedness, wooziness, brain fog, fainting
    Felt like I had Meningitis (inflammation of the protective membrane around the brain)
    I had a lot of these
    Forgetfulness, memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration, reading, or spelling
    Word retrieval problems (can't remember words, stop at mid-sentence)
    Dyslexia-type reversals, difficulty with writing
    Problems with numbers
    Difficulty with speech (slowed, slurred or stammering)
    Forgetting how to perform simple task
    Attention deficit problems, distractibility
    Difficulty with organization and planning
    Difficulty with multitasking
    Slowed speed of processingExtreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
    Swollen glands, swollen/painful lymph nodes
    For a full list please visit my Lyme symptoms link
    http://bellspalsylymesdisease.blogspot.com/2009/04/lyme-symptoms.html

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  5. Hi Birgit, I started searching this subject when my mom asked meif I had been tested fo Lyme Disease. I havent.I had Bells Palsy in June of 2009 and still have some residual. I myself had the severe pain with my Bells Palsy. I have been stubbling, forgetting my wordsI am about to speak, dizzy and lightheaded. I am interested in learning more about how you went to find out more.

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  6. Hi Brandy -at the onset of the BP I went to the hospital thinking it was a stroke, the ER doctor told me when I got back home to make an appointment with my GP and at look into Lyme - he was from the east coast and this is a very typical symptom of Lyme.

    I went to my doctor and asked for a Blood test - the tech sent it to the wrong lab where they performed the standard Lyme test, the problem with that is there is at least a 50% or 70% false negative reading. - I tested negative- so they didn't look any further.

    I continued to be dizzy, couldn't multi task, felt like I was having early Alzheimer's, was clumsy and would bump into walls, headaches, nausea (thought I was allergic to certain foods) was Very tired (that is a BIG sign) I took it as - well I guess this is a big deal to recover from..but actually it was much more then that - (it was the Lyme that was active).
    About a year later I had thyroid problems and thought - I have always been so healthy that something else must be wrong. was tested again and was still negative...

    not too long after that one of my students said - I think you have Lyme, I told her about the negative results and her response prompted me to contact the lab where I thought my blood had been tested - which it hadn't. Spoke to the lab, got the right test, ran it through my doctors office, I fedex'ed the blood back to the lab --YOU WILL NEED TO BE YOUR OWN ADVOCATE AND MAKE SURE THAT THE BLOOD GETS TO THE RIGHT LAB....

    EVERY STEP OF THE WAY can be a battle to diagnosed.

    After I received my results my doctor couldn't read it and thought they were negative, my other doctors neurologist and endocrinologist were not even interested in looking at them and didn't believe Lyme was eve in this area. I had to fight with the Lab to get them to even test me for co-infections...I am telling you this because you will have to be prepared not to passively accept what they are saying.
    DO NOT GO to an Infectious disease doctor - they have a different way of treating and I do not think they understand the scope of what they are dealing with, they follow standard guides which are limited.

    You will need:
    A Lyme literate doctor- and make sure that they understand about co-infections and when they treat they go beyond standard guidelines, the director of the lab told me that you will need an integrative doctor or if you are treated with only antibiotics you can very sick.

    Blood work through IGENEX lab - most lik a Full Panel test
    about $ 450 - this is very through, if you test negative the doctor should give you a dose of antibiotics to see if they can create a die off reaction then have your pee tested through the same lab to see if they see the die off.

    You will need to go to specific labs Hunter or Lab Corp - for them to draw the blood these labs know how to send the blood work in to IGENEX - or- once you have the test kit from IGENEX you can have your doctors office draw the blood and fed ex it back yourself - you will need to follow it every step of they way to make sure it makes it back to the correct lab.

    If you are on certain meds - you may still get a false negative - since it is so hard to get a good reading - some doctors are now looking at not only your lab results but your symptoms then treating

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  7. 60 % of Bells Palsy Patents test positive for Lyme - Bells Palsy is a very common symptom of Lyme

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    1. The symptoms of Lyme disease is very difficult to diagnose and therefore can be really dangerous for someone's for life. Lyme disease is common across the United States.

      Lyme disease

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  8. I have Lymes and got Facial Plasy also. Mine started coming back at around 3 weeks but at 6 months ( yesterday) I still have symptoms. I was very tired for a lot of the summer and blamed it on depression form losing my Dad in February on Sept 2nd I had a spot on the left side of my head that hurt really bad. I have had symptoms like this before, Trigemianl Neuralgiaish. Thses symptoms would last 3 or 4 days. This time was different, it kept getting worse and then started to itch terribley. I was treated for a zoster infection of the 5th cranial nerve. The pain got terrible, i had swollen glands and my face was swollen. On Sept 17th, the plasy set in. After blood work results showed lymes,I was finally dignosedwith lymes on the 26th of Sept. I did so much research and did find that the best thing is B12 injections. Evey other day if possible, if not. Methyl form is good at 60 to 80 MGs ad day. That is 2 5000 mcgs 6 to 8 times a day...Sublyngal ( sp)...I didn;t belive it was Lymes because I didn;t think I had symptoms. When I started to read aobut it and think back I had so many symptoms. First let me tell you that I read that lymes runs 3 ways, that is in the joints, neurologically or to the heart. The symptoms I had were first, hip pain, then for about a week straight I had full body burning and shooting pains so bad that it would wake me up at night, they are both symptoms, I had cenral face numbness... I kept telling my husband that it felt like I was touching someone elses face when I touched my nose or the left cheek area. I had a hug welt ont eh side of my left breast, my bulls eye I'm sure. I was also so, so tired. I really don;t remeber much of August. We have a pool and I spent very little time out there.. the heat was too uch and i was just plain exhausted. I would liek to tell eveyone to not let the symptoms get away from you...get checked right away. 2 other things I read were that dog ticks, fleas, and biting flies are now also carries of lymes... not just Deer Ticks...and another important thing is that it is important to take more than just a 10 treatment of Doxcy, Lymes gose dormant ever and can do so evey month or so, and if it is ormant, it can;t be detected or treated... I did 60 days of antibiotics, I do have ll my energy back but still haave soem hip pain. I was retested and it is still active..my numbers ere ariginally 3.91 and is down to 1.67 but still active... not just antibodies. If anything I have told you of my run with this horrific disease helps just 1 person, I am happy. Thank you for this site and all of your knowledge of lymes....My father started to have communication problems in late 2006 and this slowly turned into what the doctors called Vascular Dementia. I would bet anything that what he really had was undiagnosed Lymes. It breaks my hear tto think that I tried to prove everyway I could that it was something other than dementia... I wish I knew more about Lymes back then. One Study I read about showed that out of 1000, 33% of pelople with ALS, MS and Alzheimers were cure after being treated for lymes.... That amazes me. There ae so many people I have toalked to who have become disabled due to untreated lymes... please be careful and do't take any symptoms with a grain of salt.... :_) Good luck to all...

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    1. Thank you for your comment, you are helping others by sharing your experience

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    2. Hi Birgit, I hope things go well with your treatment. I had bell's palsy in 1988. Then the joint pains. Then i started getting the bulls-eye rash. I have also researched, because doctors just don't get it. They think you have hypochondria. Everything that I have read in your article is everything I have been experiencing for 25 years. I used to be so bright and intelligent,and little by little, I can't keep a sentence together without forgetting what I was saying. It's heartbreaking. I have went to 5 or 6 different doctors and my bulls-eye rash, they don't know what it is . I have printed the symptoms from your article to take to my family doctor. Thank you for sharing. Maybe now I can get some results.

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  9. I hope you continue to recover from this! When I was 14 I sat down for dinner one night with my family and my mom looked at my face saying it looked really strange. Next morning I woke up with complete paralysis to the left side of my face. My mom rushed me to my doctor were j was tested for lymes disease and also treated for pink eye since I couldn't control the muscles in my left eye. Less than a week later I was in the hospital and had many test performed as well as a pic line placed in my arm. After a month of heavy doses of medication my face slowly improved along with my lymes. It has now been 13 years and I am almost 100% improved. I know the pain and suffering it can cause. Unlike you I was fortunate enough for my test to come back positive the first time and I do live on the east coast so they knew the proper steps to take. I also kicked out in having a to notch neurologist. I can still see the effects of my bells palsy but most people wouldn't. Now I'm fighting the uphill battle of why I am experiencing all my pains again however

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    1. Thank you so much for your comment - I think many will find it helpful.

      It is interesting that you are experiencing some of the same symptoms. I am sure you know that we don't build an immunity to other tick bites and we can always be bitten again, or the other thing they say it never really goes away. Perhaps stress or a rundown immune system. I really don't know but I would be looking at some of those things. In fact I just had a huge workup again because I had some pains etc myself but the tests all came back good so I I must have just worn myself down a little. In general it's all good. You might want to get retested but as you know the testing is not always reliable - thank you again for your comment and I am wishing you all the best

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  10. hello, i have bp for 3 years now and im only like 40% recovered, most of my smile is still drooping! it seems like most of everyone that i hear from that has suffered from bp if fully recover!....Omg! am i going to stay like this for ever?? is there still recovery after years??....thank you for your input on this!

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    1. I feel your pain.. I am not fond of pictures of myself (maybe if I don't smile too much or wear my sunglasses it's okay) but gosh if I get too happy or animated and the camera catches me at that moment I get a little depressed and think like I look like Popeye- hate it

      All I can say is that it's a journey and I would like to think that we can still recover even after doctors say we can't, What can we do, they say it can takes years for the nerves to recover and then when is it too late to stimulate them?

      The right side of my face has over compensated for the left side making those muscles stronger while the other side is so weak. I try to be aware of is exercising the other side but not as much as I should- if I could only sit still long enough and look in the mirror and isolate my facial muscles maybe that would help but it's been years now and doubt I can do much more. But maybe I'm wrong and should do more acupuncture.

      I do know that I was still having recovery up to 5 years so you may still have some time to heal.

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  11. Just this past week I attended the funeral of a very dear friend and co-worker 75 years of age. Over 15 years ago she had BP and actually RECOVERED many months later from her drooped facial muscles on the left side of her face, however she did not like to have a photos made, due to her squinted left eye. When she retired, she became depressed, weak, dizzy and right hand and arm began to shake, not being unable to type as before, nor hold onto the phone, and eventually she became unbalanced when she walked. In the Summer of 2012 after many test, etc. her diagnosis was Parkinson's.. With no one home to care for her she was placed into a nursing Home in Virginia. So in less than a year and half she died. I don't know what medications she was being administered her during her horrible ordeal, but I know she never had an appetite, and lost lots of weight. I accidently stumbled across your Web site, and it appears it could have been due to Lymes Disease. I miss her very much. Nothing can be done now in her case, but I am just so fortunate to have more knowledge on this topic of Lymes Disease. Never crossed my mind that in many cases Lyme disease is the culprit.

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  12. Great post.........According to me Bell's palsy is defined as a one-sided facial nerve paralysis of unknown cause. Several other conditions can also cause facial paralysis, e.g., brain tumor, stroke, myasthenia gravis, and Lyme disease; however, if no specific cause can be identified, the condition is known as Bell's palsy.acupuncture nj

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  13. Really, Glad to know that you recovered from Bells Palsy. I want that every person should have good health. I think healthy living is the true happiness. I want to be a natural healer like all the master of Trivedi Effect so I can help all the persons to overcome from various diseases.

    I would like to suggest some food what to eat and what to avoid in Bells Palsy -

    Foods to eat -
    All meats
    Fish
    Yogurt
    Cheese
    Milk
    Eggs
    Apples
    Pears
    Apricots
    Avocados
    Pineapples
    Green beans
    Asparagus

    Food to avoid-
    Tomatoes
    Wheat Germ
    Brussels sprouts
    Cashews
    Grapes
    Pumpkin Seeds
    Pecans
    Blackberries
    Blueberries
    Peanuts
    Chocolate
    Sugars

    God bless you, I pray to god you will recover 100% from bell's palsy.

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