I really didn't want to have any photos of myself during this time, especially since the doctors said that I would never recover. I only started to have a tinniest amount of improvement 3 months after I first got the Bells. These photo's were about 5 months into it. I was still horribly exhausted but was starting to think I might be able to finally blink and needed to take a photo so I could see for myself. What I was actually doing was rolling my eye up. You can see I was trying really hard to close my eye.
What doctors don't tell you or maybe they don't know is that 60% of Bells Palsy patients actually have Lyme disease.
The Bells Palsy effect is the Lyme moving into the Acute or Chronic stage. Many doctors especially out here on the West Coast don't know much about Lyme or even give it merit.
If you have Bells Palsy you need to have a good Lyme test to rule it out, even then you may not have an accurate test. I had two negative tests.
If you have Bells Palsy they may want to put you on anti viral medications or steroids. One or both of these will contribute to a negative result for a Lyme test. Standard testing is not recommend. This means the testing that you get where the results come back in three days. You need extensive testing (a FULL PANEL test) test # 6040 from Igenex http://igenex.com 800.832.3200 you can have the test sent to you and Igenex will pay for the test to be sent back return shipping the cost is approx $ 450. But other tests are "really worthless" and produce huge numbers of false negative and false positives. For more information you can do a google search.
The results from the Igenex testing take about three weeks to return, then hopefully your doctor has an idea of how to read them. Get a copy for yourself and look at the numbers if you see any ( + ) instead of a ( - ) there is something going on with you. If you see ( IND ) next to the numbers that should cause pause. Your doctor may see ( IND & - ) and say you are negative. But the (IND ) indicates you may need further testing. This means a small coarse of antibiotics then retest in a couple of weeks to allow for a possible die-off that can then be measured in testing, this may be another blood or possible urine test.
did u ever recover
ReplyDeleteAbout the Lyme or Bells palsy - they are both big subjects.
ReplyDeleteTo be honest with you - it was an incredible battle to get where I am now.
I approached it as war and not to let up, I thought I would never recover and that it was the end of my world, my life and career. My decision was to go after this full throttle and made the decision that nothing will have the best of me. When possible I was teaching even with a pic-line due to how expensive the treatment is for this disease.
I am in remission - but it is always on my mind and very aware, I don't forget where I have been and hope to share the journey with others in hopes that it can help just one other person. There were times where I thought -God- if I was in a accident or some other event, I just didn't have the energy to pull through it, the fighting takes it's toll. I have always tried to stay positive laughing at the craziness, and the difficulty (still lots and lots of tears and how hard ridiculously hard the fight is to get the right treatment, I even the lab tech that had me in tears because she thought the testing I was having was not necessary - you know what, that is not her job and she was only a tech not a doctor.)
If possible you truly need an advocate but someone that truly understands the disease but how do you find one - so in reality your have to find own way through and it is not easy.
I came to a point where I thought I am done with this disease and "I am not my disease" and not to fall into the victim role which is easy to do after fighting for so long and so hard it has been almost 2 years now and I am doing great, I am making plans for the future and making commitments years in advance and have decided if I end up wit any problems I will deal with the then and not to live in fear.
So many people are afraid to say that they have this disease I am not sure what anyone is afraid about - being labeled what? and I think that is part of the problem because many people still think it is only an east coast problem.
Symptoms - You name it I had it, along with the co-infection of babesia I could have easily listened to the main stream doctors and turned my life over to them and if I did I would not be where I am now.
As far as my Bells Palsy it's going on 5 years years I still try to isolate my muscles and work with the occasionally - it's about 95% better if you didn't know me you would think that is what I always looked like - but alas it is not, I feel fortunate to have what I have and it is pretty darn good. Remember if you are only consider about your face there is always someone else that has it worse.
Nothing about this disease is easy. I wish you all the best and I am here
My Dad had Bells Palsey. At the time it was blamed on Herpes Zoster, and he may have been given an antibiotic....there was fear he'd lose his eyesight. Every major health symptom he has ever had was NEVER suspected to be Tick caused altho his environment pretty much the whole of his life equaled max exposure, locales, known tick country. He is 90 and has never been tested, likely our whole family has lyme, "generationally". Doctors should ask about one's history (ancestrial), surroundings, your chores, your hobbies, and they don't.
ReplyDeleteTHANKYOU for sharing your struggle, here.
new subscriber, Laurie
Dear Laurie Thank you for sharing, that is an amazing story. All I am really trying to do is to bring it to everyone’s attention as something a possibility that should be considered, especially if you are basically a healthy person and then start to have these odd and unusual symptoms. Many doctors are not really thinking about it so you have to really be "YOUR OWN" advocate.
ReplyDeleteI had bells palsy years ago, and had SEVEN negative lymes tests before going to a neurologist who finally found out I was in 3rd stage lymes disease. It is such an embarrassing horrible thing. Especially at the age of 14 when I had gotten it. But yes....CANNOT STRESS ENUF about repetitive testing. If I didn't agree to finally get a spinal tap, would have taken years longer or never have known and maybe died.
ReplyDeleteI DID finally recover,after months of staying in the house and hiding from my teenage friends. (I was a ballet dancer and competiton cheerleader- neither of which I would do looking like that)
I still remember going from doctor, and my mother just sitting up at nite crying because she didn't know what was wrong with her only. child... it got to a point where I thought I would b like that forever and got very suicidal. (Which I an positive has something to do w lymes also. I was a VERY positive child and all of a sudden was going from As and Bs to Ds and Fs in school. PLEASE PLEASE KNOW THAT THERE IS RECOVERY.... I AM 100% BETTER NOW, and a happy healthy 34year old women. Good luck to u all and my prayers are w u
What did you do for treatment?
DeleteThank you Jessica your coment will be very helpful to others..:)
ReplyDeleteMy daughter is 27 and what we thought was shingles may actually have been from a tick. The Saturn like rash on her hip gave us little pause although the flu-like symptoms were rather uncomfortable. That was the end of December 2010 and then on February 11, 2011 the Bell's hit. She is about 95% better with that. The heart palipatations started in February of this year and the month long heart monitor proved she indeed have tachycardia. The BP med was given to control the heart from working too hard. Yeast infections followed with unexplained fevers, night sweats and odd dreams. The rashes come and go that look like heat rash but she is now on her fifth unexplained rash. She changed her diet to Gluten free works out but there is no weight change. Her knee joints ache and it seems to be a chronic thing now. We went to see the doc yesterday and it was the first time we heard of Lyme. The Lyme Striker Panel was ordered and she goes in tomorrow. Could this really be Lyme?
ReplyDeleteYes sounds pretty typical to me.. along with having a Co-infection, two or three. Babesia is notorious for night sweats, fevers and odd dreams along with many other symptoms
DeleteCONFECTIONS: A SYNOPSIS http://www.lymeinfo.net/coinfectionarticle.html
To give you a heads up on the Stricker panel when I last checked mine it was at 14 ..but I am doing GREAT. Some people with higher readings such as within the 150 -250 range can be much more sick then me. My doctors are now not too sure how much those readings are as important as first thought. They need to look at her symptoms and even if she does not test positive she may still have it, it's a tricky thing to find.
If they don't see a positive in a Lyme test (which they might not since it has been awhile - and most likely they gave her steroids for her Bells) they may want to give her Doxcyline for a week or so to try to stimulate a die off then test her urine, they may see a die off of the spirochetes there.
I had a full panel through IGENEX and most of it came back negative except for one tiny tiny positive ..my original doctor didn't know what that meant and assumed it was all negative - which it wasn't. I then followed through and went to another doctor that was Lyme literate and the journey began.
I would have the testing done through IGENEX and also consider the co-infection test. The treatment is a bit different for both. Some doctors like to treat co-infections before treating for Lyme. What I understand now is that some are treating both at the same time.
What you should know, is if they start treating her she will more then likely feel (perhaps) even worse. This is called a Herx reaction - or die off. This is normal. You doctor will decide on the correct treatment for her... I will just about guarantee she has Lyme...and needs treatment.
For myself I am glad that I did the oral antibiotics before I did the picline so I could cycle through some of the Herx reactions first before we brought out the big guns of a pic-line.Also her body is going to have to handle a lot and the longer they have it the longer the treatment- or from what I have seen it become chronic If I can add anything else let me know and best wishes to you all.
I was asked what I did for my BP here is a link http://bellspalsylymesdisease.blogspot.com/2011/03/bells-palsy-and-what-i-did.html
DeleteByron White Formulas is what I have been using. THey have detox formulas for the herxing and herbal formulas for the viral part. So many people I know have used these and have been helped. I thought I would share in case you needed some more alternative help with your battle. Good luck.
ReplyDelete