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Bells Palsy / Facial droopiness / Look sick?

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Posted 9/12/2010 1:21 PM (GMT -5)
I'm wondering if anyone else has experienced facial droopiness or bells palsy with Lyme?

I was diagnosed with Ramsay hunt syndrome and had right facial paralysis and left sided partial paralysis. I've experienced the facial droopiness for 3 years on and off - now it's pretty much constant although I recovered from the full paralysis. I also look sick and my face swells as well. There is also severe pain through my face and body like electric shock sensations.

Does anyone ever experience these symptoms? My Lyme diagnosis hasn't been confirmed but I am on antibiotic therapy.

Post Edited (namaste44) : 2/15/2015 5:53:50 PM (GMT-7)

Posted 9/12/2010 4:45 PM (GMT -5)
Toxins, toxins, toxins cause all that..   If you are not on a strict detox regime you can read about it in the sticky thread called "New to Lyme?  Start here!"

Hope that helps,

Denise

Posted 9/12/2010 4:58 PM (GMT -5)
Hi Deejavu,

Yes my symptoms ALways get better when I'm on a cleanse (the doctors always laugh at me when I mention this). I'm always doing some sort of cleansing routine, but recently stopped taking the cleanse, I'm still taking a bowel cleanse, and drinking clorphyl, wheat grass juice, and aloe vera juice in the morning, as well as lemon juice. I cut back on the herbal cleanse since I just started taking abx and wanted to see if it was working or not. I feel worse but I'm not sure it's bad enough to classify as a "herx" or even if the abx are doing anything. We still don't know if I have Lyme although I pretty much have every single symptom and multiple white matter lesions on my brain and a positive Igenix test but it's negative by the CDC. Originally was diagnosed with a hormonal imbalance. It all started with losing my periods at the age of 28 - and I"m now 30 going on 31 and have osteoporosis and have basically gone through menopause. My symptoms weren't related to Lyme to begin with - all hormonal - then the neurological symptoms began with the droopy face, pains, nerve pains, migraines, aura migraines, numbness, joint pains/cracking etc... All doctors just told me it's "pychological" even though on top of that I am not producing T3 or Progesterone which is enough to cause problems and severe depression.

The past 3 years have been so devastating I can't imagine that some people have gone through this for 40 years as I've read on other posts! I feel so much for them - I can't imagine another year going through this - especially not knowing what's going on is the hardest. I just hope that this is the correct diagnosis and i'm being treated correctly, but I'm still not sure. But I definitely agree with you on the detoxing! It's the only thing I've found that's helped me at all - and colon cleansing. As for diet though I was put on a high protein diet to help with the hormonal imbalance, this is of concern to me because I'm wondering if that's made me actually worse than better? Any suggestions on diet?

Thanks for responding.
Posted 9/12/2010 7:04 PM (GMT -5)
Hi namaste (funny, we had a member here with a similar name),

Anyway, very interesting that your symptoms always get better when you are detoxing, that's pretty much your answer right?  Forget about the doctors laughing, it's your body, not theirs.   So do what you were doing since that works for you.. 

Are you doing the detox baths, foot baths and dry skin brushing? 

IgeneX comes close to being the most accurate, is there a reason you need to be CDC positive?  Most people who have chronic lyme are NOT CDC positive.  Most times lyme is a clinical diagnosis going by one's symptoms..  If it walks like a duck, quacks like a duck, then it must be a duck, LOL!

I suggest going back to heavy detoxing..  I am not a believer in antibiotics, I believe they do more harm than good..  that's my opinion.    As far as diet, I still stay away from all bad carbs and get my "good" carbs from veggies..   I am also on a high protein diet (again, no white flour, no sugar, etc.).   Organic is the best but I can't afford that..   Sorry you went through menopause at such a young age.. Wow!  I was a late bloomer when I finally entered menopause..  It's not fun! 

Denise

Posted 9/12/2010 11:19 PM (GMT -5)
Hi Deejavu, thanks for responding again. I've only been on the abx for not even 1 month now, before this i thought I was dealing with a hormonal imbalance and weakened immune system. I always suspected the Lyme virus but never had the test done until last year which was 2 negative Elisa tests, but had the positive Igenix western blot test. But before this I would do the Cleanse Smart cleanse and always feel better after doing this - the facial drooping, pains, weakness, brain fog etc... always lifted but it started working less and less and my symptoms have become worse.

I'm going to stick to the abx for atleast 3-4 months, as long as the doctor believes this is Lyme based on my mild reaction. I'm still hopeful that my periods will come back and this whole "hypopituitarism" will heal as well and will reverse this.

I'm going to try the detox baths and dry brushing starting tomorrow! I've only done the foot baths at the naturopath's that detox the body - is this what you are talking about?

I was doing acupuncture 3x per week and have only been using naturopathic medicine for the past 3 years and believe that maybe it could have worked if I hadn't had so much stress in my life. I've put it all on hold for the abx treatment for now.

As for diet, I keep feeling the need to go on a major cleanse / detox with only vegetable juice but worried about the high amount of carbs that would provide. Last time I tried juicing I felt pretty weak.

Thanks for the support.
Posted 9/13/2010 8:12 PM (GMT -5)
Yup, I have always been a little jealous of the peole with lyme who have had people say they look great. I don't (look good), when I'm sick with a bout of wonderful lyme. I'm prone to the bell's but also a long droopy exhausted look I scare myself if I look in a mirror.
Posted 9/13/2010 8:36 PM (GMT -5)
Namaste:
I wanted to welcome you. I am also on abx--a little about 5 weeks into it. I wasn't feeling anything until week 3-4. Believe me, when the herx comes, you will know! Detox as much as possible. I can't detox bec I am breastfeeding, but I do try to do things to make myself sweat to get the toxins out. Exersice will help you get the abx in and around, so try to do that if you can. The worse thing you can do is sit around.

What abx are you taking (Brand and dose and how many times a day)? Sometimes if you don't take a high enough dose, you won't kill much bacteria and you will not feel as sick as other people. I know I should take a higher dose, but I am breastfeeding, so I am feeling good, but I know I am not killing enough stuff, hence I am not herxing as much as other people.

I am numb everywhere at times--it keeps switching btwn face, arms and legs; and my lips get numb, too.  But not quite BP.  My face is swellen at limes, spec. in the morning when I wake up, one time I looked really scary.  And I do get the blue circles around eyes as well--they pretty much never go away.  Don't expect your WB test to be +.  It will turn + after you take tons of abx, even if it is -- now.  I hope you will post some updates soon.

Good luck!

Post Edited (Simela) : 9/13/2010 7:41:47 PM (GMT-6)

Posted 9/13/2010 9:31 PM (GMT -5)
Deejavu, I am so thankful that you always remind to detox because I seem to have an issue with doing this on a consistent basis even though I know I should. I don't think most doctors emphasize this enough.

Rose, I also envy those who don't look sick because although there are times when I can look pretty good for a few hours, most of the time I look almost as bad as I feel.

Namaste, I also have a slight palsey that seems to get worse at times...of course when I'm feeling worse overall.

Recently I too felt the need to do a vegetable juice cleanse because I was getting off track with my diet. Well, it made me feel even weaker and sicker and when I told my internist she said she never would have recommended I do that at this point because I need more protein. The problem is that lately I often have a weird aversion to food in general, but especially the foods I should be eating. I never seem to have a problem drinking (no not alcohol...lol) so I tried incorporating high quality whey protein shakes only to find out that I have yet another food sensitivity to boot....ugh!
Posted 9/14/2010 9:31 PM (GMT -5)
Thanks for all the responses, I guess it's sometimes nice to find commonality even if it's of negative things... it's hard when you feel you're the only one dealing with these things, but I wish us all good health and happiness soon!

Scorpio - I also have had an aversion to most foods recently - I'm having major cravings though for pastas, and doughnuts! Which I literally haven't touched in over 3 years! I was wondering if it had to do with my body really needing more carbs or the bacteria wanting sugar...

I was reading about going to the Hansa centre and I believe their treatment protocol consists of detoxing with vegetable juices, I've also looked into the Hypocrates centre as well which also advocates vegetable juices as part of healing illnesses. I'm so tempted to try one of the programs out. Has anyone had any experiences with either of these clinics?

Scorpio - have you tried Pea protein or rice Protein powders? I like the Vegan+ Protein powder when I feel I need to switch it up a little

Simela, I'm taking Apo-Metronidazole 500MG -2x/day + CO Azithromycin 250mg - 2x/day. I've heard that Doxy is being used and people have had better results with this? I thought it was only given if it was a recent infection. What Abx were you on?
Posted 9/14/2010 9:46 PM (GMT -5)
RosesinJanuary – just wondering if you had bell's palsy or if you have facial weakness that comes and goes? And if you do any sort of cleanse / detox do your symptoms seem to improve?

I had Bell's palsy that was diagnosed as Ramsay hunt syndrome - caused by the Varizella zoster virus (Shingles) I also had Mono at the time. Leading up to this and after my face was weak and drooping and when it was paralyzed I thought I finally found the answer to all my symptoms as they were all exaggerated during this time and was bedridden for 3 months. But the doctors couldn't account for my other symptoms such as severe pain throughout the entire body like I was being electrocuted, among others. There is no connection between those symptoms and the shingles virus and when I saw an infectious disease specialist afterwards she saw me for 5 mins and just said to deal with the symptoms and that they were an immune response after having an infection, other doctors pretty much just think I have CFS and depression!

I'm just struggling with this diagnosis - I want to be 100% sure this is what I'm dealing with.
Posted 9/14/2010 9:59 PM (GMT -5)
namaste44:

I am only taking amoxiciline 500 mg 3x/day. Knock in wood, in has helped me a lot. Prior to it, I was a mess for a few weeks (my second time dealing with this--I suspect a relapse). I can now function and take care of my baby. Prior to this, I could barely walk and the pain in my hands was so bad, that I could not lift her (she is only 15 lb) and I was wrapping my hands in elastic bands just to ease the pain. I am breasfeeding, so there is not much more I can do for now. I will be seing a LLMD for the first time on Thursday and see what he says. The amox was given to me by my new GP (#3), after the second GP did not treat me for lyme for over a year bec he thought my Lyme tests were false +. I was treated by GP#1 for 3 weeks. Took doxy for 10 days and I could not tolarate it. So I took 3 weeks of cefuroxime, instead. I was ok for a couple of months, after which all my symptoms came back stronger and uglier+new symptoms came about including memory problems. GP#3 (Current) treated me based on GP#2' test results (4 of them during the course of a year, while I was in his care). I pulled my records when I realized he was missing something and started my own research and dropped him.
Posted 9/14/2010 10:04 PM (GMT -5)
By the way, someone's husband that works with my husband studied ticks and got bit by one. I think he was doing his PhD studies on ticks when this happened. He recovered from bells palsy. It got so bad that he was taping his eye braw because his left eye would not open, but he recovered from it.

Good luck!
Posted 9/14/2010 10:15 PM (GMT -5)
Simela, I can't believe that doctor ignored your positive test results - it's one thing to ignore a negative result, I just can't believe how ignorant these doctors are!

I wonder if I'm on the right antibiotics to incite a herx response to confirm if this is Lyme or not - I'm almost finished one months worth and although I'm feeling worse - it's nothing I haven't felt before. Although my joints do seem to be worse than before.

With the bells palsy I was also taping my eye shut, it lasted for about 3-4 months and is still not 100%, even still I'm dealing with chronic facial weakness.
Posted 9/15/2010 12:26 AM (GMT -5)
I wrote 2 messages and lost them, arrr! You will find a lot of info in the link below. Dr. B wrote the guidelines for treating lyme and many LLMDs follow his steps. You will find a lot of info on the "new to lyme--start here"--the first post on this lyme forum. I hope you'll get a chance to go through it, because you will find different protocols there for treating lyme, including tips on detoxing.

http://researchednutritionals.com/FactSheets/Burrascano's%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

about my tests: My IgMs were +, and this is a common mistake docs make--they assume that the IgGs should be + if there is a history of an old infection. THis is simply not true, I just didn't know any better at the time and appearantly, neigher did he!

MY OPPINION: I think BP is serious, I would be concerned.  The fact that your test was negative may mean that the bacteria is in your central nervous system and is not detectable in the blood.  I get a lot of numbness in my face, but no BP.  I am glad you are getting treatement. Are you seing a Lyme doc or your regular GP?  I do not have anything against natural remedies, my LLMD does a combination of both, I briefly spoke to his staff and I know what to expect. I believe abx are the answer for me for now, so that is the path I chose, it may protect the baby from getting sick. i do not put down natural remedies, but all people that I have met and are doing better now, did abx first and then natural remedies.

I do not believe someone can get well right from the start only with natural remedies, if they have been sick for a while, unless they take it as soon as they get bit or soon afterwards (my oppinion).  I have been infected for at least 2 years, not sure exactly because I never got the rash, so I can't take a chance to experiment with stuff, I need something to kill/kill/kill!  I think a combo may work better than one or the other.  I don't know anything about the drugs you are taking, so I can't comment on that.  Maybe someone else here that took your drugs can tell you how they work for them.  Dr. B lists doses and drugs recommanded for lyme, so if you read the article in the link I provided, you may find yours--too tired now to look at it, but I did read it and it answered many questions I've had.

Abx are harmful vs there are no/or very little studies about success with herbal treatements alone--there is no free lunch.  You will have to decide for yourself.

I am also looking into the rife machines.  Some people have had luck with them.  Again, no studies on this.

I hope you will keep posting and let us know how you are doing!

about your periods:  Did you test your thyroid?  I was getting 2 periods a month!  My thyroid meds have been adjusted again (oh, I don't know how many times have been adjusted so far, at least 10 times in 5 years)! and I no longer get 2, only one per month.  My OBgyn said Hypothyroidism can do that (and I do have Hypothyroidism).  I suspect I got lyme first and then started to have Thyroid problems, but I can't prove this.

Did you test for co-infections or just lyme? 

Post Edited (Simela) : 9/14/2010 11:56:05 PM (GMT-6)

Posted 9/15/2010 8:20 PM (GMT -5)
Namaste44, I'm going to try the powders you suggested...thanks! I hate to say it but I think your cravings are coming from the bacteria not the need for carbs. At least that's what my llmd always tells me.
Posted 9/19/2010 2:52 PM (GMT -5)
Simela, thanks for all the info! I read up on Dr.B's literature you sent and didn't realize how many different antibiotics there are! I still keep reading about the herx reaction which I don't believe I am having. It has been one months on the antibiotic combination i'm taking, the only difference is I had some more joint pain, but other than that I have felt this bad before - it's not a "new" feeling.

I believe the one antibiotic I'm taking is Flagyll - which someone had posted an article with FDA warnings about the serious adverse effects of the drug on the central nervous system - which is where I have issues already. It's so confusing to know what to do - especially when the diagnosis isn't confirmed 100%. I'm going tomorrow for my first follow up blood test after taking the abx treatment - so maybe this will help confirm the diagnosis.

For my thyroid I have low T3 which I'm taking natural T3 supplements for. I also take progesterone because I'm not producing it either, I was diagnosed with Hypopituitarism - and this is where it all started. I think having a hormonal imbalance made my immune system weak - and possibly allowed the Lyme to really surface and take over... just a theory if this is what I am dealing with.

I'm curious too about the Rife machines as I keep hearing about them. I'm also looking into buying a solo infrared sauna for detoxing? Also going to ask my doctor about referring me for Hyperbaric oxygen therapy as well?

Thanks again for the info!
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