Numbness

Has anyone ever have a problem with numbness on the left side of your face? I have been having this numb feeling. It started in my lest eye n went down the left side of my face n the side of my bottom lip. It feels like when u go to the dentist n they numb u n it starts to ware off.

Does that side of your face look like it's drooping? That's called Bell's Palsy and is common in Lyme disease. A lot of people diagnosed with lupus find out later they have Lyme disease.... the problem is that the current blood tests for Lyme disease only catch about 50% of actual cases. Very inaccurate. You have to see a Lyme-Literate doctor (LLMD for short) to be accurately diagnosed. If you want to find one in your area, contact turnthecorner.org, they can help.

Good luck!

JoAnn

I don't have numbness in my face but I do in my left arm. I am going for tests on my lungs and heart on Monday. What next, honest, I am sick of this !!!!!!!!

I know me too! It just never ends. I was tested for lyme n it was normal but my lupus came back positive my ANA was for times higher then its supposed to be. I also heard that Lupus can cause inflammation on the brain that can cause numbness on the left side of your face. I have had Lupus for 10 years.

What is ANA??

YES, Mine was overnight about 3 yrs, ago, and came with bad temporal pain, but on the right side of my face, it was SCARY, and I went to a Neuro. doc, which is when my sed rate was HIGH for the 1st time EVER! I was told I had vascular issues from the "Autoimmune Issue".....Def. GO SEE A DR. SOONER RATHER THAN LATER, Rachel, is right, any NUMBNESS is a reason to get medical attention regardless what it is from! No Joke!Feel Better & Keep us informed!!! Prainyg fo you! Suzie :0) XO

I also have had numbness off and on for all 20 plus years. I have had the nerve tests done and shown something was going on but they did not know what....this was back in late 80's. I get tired of tests at times...and as long as they checked for serious things and came out okay....than i just let it go.

But my neighbor had problem with face dropping and was not Bells palsy...but some kind of nerve thing...she had to get shots right in the nerves involved....Plus her fact hurt a lot she said. With the shots, it made it much easier to live with..pain was tolerable with aspirin.
She was seeing neurologist i recall for it...sorry cannot recall the name of it. But it was common so doctor should know about it. good luck with it.

Hi Beanzie, thankyou for writing about this. I do have this every so often where i wake up with a frozen face, feelings of numbness all down one side, and my lips are numb on one side, it also feels slighty swollen sometimes. I have been to the doctors about it, and he said to me mine was some form of bells palsy that can come on with the Lupus. Bells Palsy can make any one side of the numb and sometimes it is caused by having a stoke, or Lymes disease and one other which i have forgotten now. But my doctor said it can come on because of the Lupus, and People who have Lupus and have the APLS, Antiphospholipid Syndrome, are more likely to get it. Bells palsy works on numbing the nerves in the face, hence why it might feel like we have been to the dentist. The first time i got it, i was really unnerved, as it looked as though my side of my mouth had gone down a very small amount, and because i have had two strokes i was worried it might be that again, so i was relieved when i found out it wasnt that, but this Bells Palsy. Its just an idea, i would get it checked though. I have just noticed that Jo Ann, down below my comment has said the same thing. It is abit unnerving when it happens, i have had it a few times now. I have just seen the comment Jo Ann has also made about having Lyme's disease, maybe i should get that checked too, seeing as i do have recurrent times when i get Bells Palsy. Anyway i hope this helps, take care, look after yourself, love and hugs Astrid40xoxo

Hi Suzie D., i agree with you that it is best to get it checked. I have also had times where i have had Bells Palsy because of the APLS and the strokes i have had too probably, its so unnerving when i notice one side of my face has gone numb, and my lips look like they are dropping if only a tiny amount on one side, it always rings warning alarm bells after what i have been through with having the strokes, i expect you feel the same way about this. Anything like this should be checked, everyone is different. When we ask about what something can be, it could be that we have the same as someone else, but there are so many different things with the same symptoms, its always best to get whatever it is checked, and more so with something like this. Anyway hope you are not too bad at the moment, take care, love and hugs Astrid40xoxo

Suzie D. said:

YES, Mine was overnight about 3 yrs, ago, and came with bad temporal pain, but on the right side of my face, it was SCARY, and I went to a Neuro. doc, which is when my sed rate was HIGH for the 1st time EVER! I was told I had vascular issues from the "Autoimmune Issue".....Def. GO SEE A DR. SOONER RATHER THAN LATER, Rachel, is right, any NUMBNESS is a reason to get medical attention regardless what it is from! No Joke!Feel Better & Keep us informed!!! Prainyg fo you! Suzie :0) XO

Thanks Astrid,That's right, be both have the APLS, maybe she should also be checked for those antibodies also? Maybe it has something to do with them? Ya never know, although WE NEVER REALLY KNOW w/ all ofthis, right?! I am hangin' in, hurting from snow coming in tomm & also getting a virus too....so a lil' crappy today, but I will be OK! Hope u r doing Ok to my friend!!! TTYS! Have a GR8 Weekend!!! Suize Xo :0)

astrid40 said:

Hi Suzie D., i agree with you that it is best to get it checked. I have also had times where i have had Bells Palsy because of the APLS and the strokes i have had too probably, its so unnerving when i notice one side of my face has gone numb, and my lips look like they are dropping if only a tiny amount on one side, it always rings warning alarm bells after what i have been through with having the strokes, i expect you feel the same way about this. Anything like this should be checked, everyone is different. When we ask about what something can be, it could be that we have the same as someone else, but there are so many different things with the same symptoms, its always best to get whatever it is checked, and more so with something like this. Anyway hope you are not too bad at the moment, take care, love and hugs Astrid40xoxo

Suzie D. said:

YES, Mine was overnight about 3 yrs, ago, and came with bad temporal pain, but on the right side of my face, it was SCARY, and I went to a Neuro. doc, which is when my sed rate was HIGH for the 1st time EVER! I was told I had vascular issues from the "Autoimmune Issue".....Def. GO SEE A DR. SOONER RATHER THAN LATER, Rachel, is right, any NUMBNESS is a reason to get medical attention regardless what it is from! No Joke!Feel Better & Keep us informed!!! Prainyg fo you! Suzie :0) XO

Hi Suzie D., Thankyou for your message. Yes it might be worth getting it checked. There are so many things that we wont know about. Well done for hanging in there, i have had one of those weeks where i have been so tired and not be able to do alot until late in the day and i mean late, its so frustrating, but i have to just let it happen, as there is no point stressing over it. I had one of those days where i did have to get out today, and i woke up early, only to fall back to sleep until 12 midday. I did manage to get out, but it killed me if you know what i mean. I was so glad to get back in and sit down and have a nice long drink, and then go back to bed, i was so shattered, i still didnt do everything i needed to, but i say hey so what, it can wait. I have learnt that we have to be kind to ourselves sometimes. The snow is hard work, they say we might be due some here, i definately wont be going out then, as i worry about falling, I am bad enough on my feet without added slipperyness to worry about. I am sorry you are feeling abit crappy, there is no other word for it really. Anyway have a really good weekend yourself, take care, look after yourself, love and hugs Astrid40xoxox

Thanks Sweetie!!! Feel Better! Rest, rest, Rest!!! :0) Suzie Xo

astrid40 said:

Hi Suzie D., Thankyou for your message. Yes it might be worth getting it checked. There are so many things that we wont know about. Well done for hanging in there, i have had one of those weeks where i have been so tired and not be able to do alot until late in the day and i mean late, its so frustrating, but i have to just let it happen, as there is no point stressing over it. I had one of those days where i did have to get out today, and i woke up early, only to fall back to sleep until 12 midday. I did manage to get out, but it killed me if you know what i mean. I was so glad to get back in and sit down and have a nice long drink, and then go back to bed, i was so shattered, i still didnt do everything i needed to, but i say hey so what, it can wait. I have learnt that we have to be kind to ourselves sometimes. The snow is hard work, they say we might be due some here, i definately wont be going out then, as i worry about falling, I am bad enough on my feet without added slipperyness to worry about. I am sorry you are feeling abit crappy, there is no other word for it really. Anyway have a really good weekend yourself, take care, look after yourself, love and hugs Astrid40xoxox

Hi Joann, I actually just really read thru this thoroughly, I was 1st told by Gen. Doc. That I most likely had Lyme's when my face numbness occured. ( He said it happened to a family member of his, Bells Palsy, just like u said) I was tested & it was Neg. then. but personally living n the country & dealing w/ many animals i think I do HAVE a form of Lyme's....a way back , my antibody tests for it were some pos & some neg,,,, so the Doc was like Oh..... you most likely don't have it! BUT my Epstein Barr was waaaaaay positive , like off the roof, high!!! So, they said it all comes w/ the "Lupus-Like" thing.....what else is knew, right?! lol....Anyways, after reading what ur advice was, it dawned on me that YES, they said Lymes first to me, before the I went to the Neuro. after.......Hmmm, food for thought....this is all so intersting & ANNOYING TOO! ;) Have a Good Weekend Joann!!! Be Well, Suzie :0)

JoAnn O'Linger-Luscusk said:

Does that side of your face look like it's drooping? That's called Bell's Palsy and is common in Lyme disease. A lot of people diagnosed with lupus find out later they have Lyme disease.... the problem is that the current blood tests for Lyme disease only catch about 50% of actual cases. Very inaccurate. You have to see a Lyme-Literate doctor (LLMD for short) to be accurately diagnosed. If you want to find one in your area, contact turnthecorner.org, they can help.

Good luck!

JoAnn

Suzie, the fact that you live in the country and work with animals, you did have some antibodies to Lyme show up in your blood test, plus your symptoms.... I'm not a doctor but I think you need to see an LLMD, not your regular doctor or even a neurologist.

Don't go to an Infectious Disease doctor either, they don't know how to treat Lyme. Where do you live? I may be able to help you find a good Lyme doctor. BTW, most people with Lyme disease show viral loads (Epstein-Barr, CMV, etc) that are off the charts! Also, you should be aware that it's possible to contract more than one nasty illness from a tick bite..... I have Lyme, Babesiosis, Ehrlichiosis (HME) and Bartonella. :(

There's a free documentary online called "Under Our Skin" which explains a lot about the mess in the medical community re Lyme disease. The URL is http://www.hulu.com/watch/268761/under-our-skin

You have a good weekend too! Wishing you the best of luck with everything!

Take care,

JoAnn

Hi Joann, Yes, I work w/ lots of animals, I live in the country NW NJ, lt has lots of deer and wildlife, my youngest son had lymes 2 yrs ago which presented w/ a bulls-eye so we caught it fast, THANK GOD! 1 month of STRONG Amoxicillin, poor baby :( .....So yes, it s bad where we live!! WOW, I was not aware that it causes ALL of that other stuff too!!! CRAZY......BUt u r right, w/ all my symptoms it does seem very likely. That doc about hmmm, 5 rs. ago, after my lil' guy was born & I flared, said I had "some" of the antibodies w/ the Lymes test, BUT NOT ALL...I aid, "So that is it then, no other testing needed"?? She said NO, it was fom the Autoimmune...Their excuse for everything!!! So aggravating!! That is when my EpsteinBarr was VERY HIGH!! The numbess was about 2 yrs after that......then went t Neuro he did bloodwork, neg. basic lymes, but HIGH SED RATE...said it was Autoimmune vascular....My husband swears I have Lymes, I show about 98% of the symptoms of advanced Lymes too....and I was not aware it caused other problems as u said either??! Thank U SOOOO Much for the link....sooooo appreciated & I think I need to get this looked into much further. I will let u know!! G'Night!! Suzie :0)

JoAnn O'Linger-Luscusk said:

Suzie, the fact that you live in the country and work with animals, you did have some antibodies to Lyme show up in your blood test, plus your symptoms.... I'm not a doctor but I think you need to see an LLMD, not your regular doctor or even a neurologist.

Don't go to an Infectious Disease doctor either, they don't know how to treat Lyme. Where do you live? I may be able to help you find a good Lyme doctor. BTW, most people with Lyme disease show viral loads (Epstein-Barr, CMV, etc) that are off the charts! Also, you should be aware that it's possible to contract more than one nasty illness from a tick bite..... I have Lyme, Babesiosis, Ehrlichiosis (HME) and Bartonella. :(

There's a free documentary online called "Under Our Skin" which explains a lot about the mess in the medical community re Lyme disease. The URL is http://www.hulu.com/watch/268761/under-our-skin

You have a good weekend too! Wishing you the best of luck with everything!

Take care,

JoAnn

Hi Suzie D., its really interesting about the Lymes disease and what happens and the antibodies too, i wonder if i should get myself checked, as i did have alot to do with animals in the past, i used to work for an animal charity a while back fostering. I probably havent got anything like this. You were saying something about strokes aswell, does that have anything to do with it. I always have a high ESR lately. It went down once for a week, and we were just about to celebrate and it went back up, as quickly as it went back down. I have never had a remission from Lupus but i suppose that is probably as i have so many things going on with it. I am in a flare at the moment, which is driving me mad. I am fed up with feeling so tired all the time. I feel as though i am sleeping my life away at the moment. I rang the doctors for some test results, and the receptionist said i have to make an appointment to see the doctor as he wnats to discuss something with me. I was told that on friday, why is it they do this to you on a weekend so you think i wonder what its about. Anyway the receptionist tried to make me an appointment with no success as all the appointments were taken, so i have to ring back early tomorrow to see if i can get one of the so-called appointments they keep on standby for those who need it the most. They said they have about 4 appointments free for Tuesday and Wednesday, but they cant over ride the computer and give them out yet, so that means me phoning tomorrow and hoping for the best. Last time i had to do that, by the time i got through the appointments were all gone, so i am going to start ringing five minutes earlier in the hope i get through, wish me luck. I know i have an ear infection of some sort at the moment, so i have to go anyway to get something for that, its driving me mad, its so uncomfortable, along with everything else at the moment. Trouble is when we get an infection it makes everything else worse, and when i get the antibiotics, they will have an effect on how my pain killers work, making them less effective so you cant win really can you? Hey but still we have to keep going dont we? I am trying to remain positive but its not easy. Anyway you take care, look after yourself, love and hugs Astrid40xoxox

Thank you so much everyone for all the great advise. I will keep u updated n let everyone know what happens. Xoxo

Suzie, there is a Lyme doctor in Howell, NJ: Dr. Steven Streit, 732-■■■■■■■■. Several people have spoken well of him. Other popular Lyme doctors include Dr. Eugene Eskow in Flemington, 908-■■■■■■■■ and Dr. Leslie Fein in Caldwell, 973-■■■■■■■■.

I can't stress enough how important it is to find a real Lyme-Literate MD, not just some random infectious disease doctor! Only a LLMD can truly diagnose (or rule out) Lyme disease.

Again, I wish you the best....thanks for keeping us posted!

JoAnn

Well, OK, this may turn out to be WAY more information than anybody wants.... but I feel obligated to share what I know about the current blood tests used for diagnosing Lyme disease. This is a complex but important issue, and currently very controversial in the medical community; please excuse my bluntness and verbosity!

The ELISA test is usually the first test ordered by general practitioners or other doctors who have no real clue about Lyme disease. It's probably the most useless test around, extremely inaccurate....it is supposed to detect certain antibodies formed in the blood stream against Lyme bacteria, but it is not sensitive enough. It misses most people with Lyme disease, giving false negatives more often than not. If you test negative with the ELISA test, 90% of doctors will tell you, "Well, it can't be Lyme. The ELISA test was negative". Of course, it could still be Lyme.....

Let's say you really do have Lyme (I hope NOT, of course!), and you happen to be lucky enough to test positive with the ELISA. The next step is for your doctor to order the Western Blot test, which also detects antibodies, but is much more sensitive than the ELISA. Most labs do Western Blots, but the problem is the set of *criteria* the standard labs like LabCorp, etc, use to determine what is "positive" and what is "negative" was formulated by a very biased committee of the Infectious Disease Society of America (IDSA); several members, including the committee chairman Dr. Gary Wormser, were in cahoots with the health insurance industry.

I'm sure you can see that it would be to the advantage of health insurance companies for blood tests to come up negative for Lyme disease using the IDSA/CDC criteria, as then they could refuse to pay for medications to treat it! This has happened to me, so I know a lot about this topic.

The Western Blot blood test detects antibodies to specific proteins in the bacteria that cause Lyme (Borellia burgdorferi). Some of these proteins are ONLY found in Lyme disease spirochetes, others are found in all spirochetal bacteria, including common spirochetes which cause dental infections. The "bands" represent various antibodies that your body could make in order to fight Lyme disease, and the numbers are their molecular weights.

Western Blot Bands description (note: cross-reactive means it could indicate other spirochetes, specific means it ONLY happens when Lyme disease is present. Borellia or Bb is Lyme disease.):


18 p18 flagellin fragment
20 cross-reactive for Borellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb

28 outer surface protein D (OspD); Oms28; specific for Bb
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb

38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borellia
55 cross-reactive for all Borellia
57 cross-reactive for all Borellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borellia
66 cross-reactive for all Borelia, common in all bacteria
83 specific antigen for the Lyme bacterium Bb, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients


The band numbers are actually the molecular weights of the corresponding antibodies in kilo-Daltons (kDa). I've highlighted the antibodies in red which most agree are very specific for Lyme disease.

The IDSA current set of criteria state that your Western Blot is NEGATIVE even if the test shows that your body is manufacturing antibodies to the Lyme spirochetes UNLESS:

(a) Your IgM WB has at least 2 of the following three bands positive:

OspC (22-25), 39 and 41.

OR
(b) Your IgG WB, has at least 5 of the following ten bands positive:

18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.

Trust me when I say these criteria are MESSED UP! Note that two of the bands which are very, very specific for Lyme disease (31 and 34), were left out of the IDSA lists entirely, while several bands that are also found in other bacteria WERE included!! In my opinion (and many people agree with me), if a person is producing ONE SINGLE BAND that is specific to Lyme disease plus the appropriate symptoms, he/she should be diagnosed with Lyme!

The problem is that people don't know anything about this stuff.... typically a person who is ill from Lyme disease goes to their doctor, they get tested, and then they are told, "Your blood tests were negative for Lyme disease". They trust their doctor and have no idea that the doctors and labs are following ridiculous guidelines deliberately created in order to make it VERY DIFFICULT to be diagnosed with Lyme. To make it worse, these guidelines are promoted by trusted institutions such as the Center for Disease Control and medical societies.

The positive bands from both my first and second IgM tests included 18, 30, 31, 34, and 41. Bands 23-25 and 39 were reported as indeterminate in the first IgM WB but only band 39 showed up as indeterminate in the second IgM WB.

The positive bands from my first IgG WB were 30, 31, 34, 41, and 58, and in the second IgG WB bands 31, 34, 41, and 58 were positive. In the first IgG WB, band 23-25 was indeterminate, and in the second band 39 was indeterminate.

In all of my IgG and IgM WBs, I ALWAYS tested positive for bands 31 and 34, which supposedly are ONLY made by people who either have or have had Lyme disease! But my insurance company insists that I don't have Lyme disease, even though I have the bands and the symptoms! I'm having to pay out of pocket for many treatments and medical tests because of the IDSA criteria. :(

If you want more info on Western Blot testing, please see my blog post at http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

I'm telling you all of this stuff so that you know that a negative Lyme disease blood test does NOT rule out Lyme, and also so that you see exactly why you need to go to a LLMD (Lyme-Literate doctor). Your average, garden-variety doctor is usually unaware of these issues.

OK, I'm finally done! Sorry about that, but I felt I had to post this!

JoAnn

You must live out somewhere like me!! l live about 1 mile at most from the town but totally in the country. Coyotes sing to us nightly....which has been driving our french mastiff crazy! My little 20!lb jack russell can imitate their yipping perfectly! I had no idea she could sing like an coyote...find it very cool but the mastiff, well he gets frustrated even more..poor guy.

About 15 years ago, I was tick bit..this was out in the country down near Napa since most of you now know where that is(hour north of SF)...i got the bulls eye. so i took antibiotics for i believe 6 weeks to prevent lyme's disease. I already had SLE, Ra and reynaulds plus intestinal issues going on ....the last thing i needed was another disease for the poor doctors to try and figure if i was just sick like normal person or one these diseases where behind it all.

I am so sick of insurance companies denying the facts...find a lawyer and sue. If your work picked this insurance company to be in their company...put pressure on them to drop them since they liars. Sad part is...there is very small text in the contracts which often let them off the hook legally.

Again...this is another example of why health care should not about profit but just to help people be healthy. Take the profit out but still pay people decent wages...not enormous ones as some insurance companies CEO's get...when their bonuses are in high 6 figures...and people are being told no we don't cover it...or they must keep raising rates till people with chronic illnesses no longer can afford them well all of that is wrong and needs to be stopped.

Here in my small town...we have email service that a lot of the more liberal side belong too....what has come out in it and this got more conservative people to join so we could all try to help one another....is that those with chronic illness who have to pay for their own insurance either from loss of job or self employed...all of them once they were diagnosed with chronic illness their rates kept going up monthly till they were over thousand dollars per month. Here in Calif if you go off your work insurance due to loss or quit...Cobra takes over for a year it is $600 month for one person! After that year than the company can raise it and they do ...again if some one has chronic illness. Just is not right!

So people here just go with out...only go see doctors in the emergency room or county health. Neither have specialists that can help those with auto immune diseases.

Just is sad and frustrating for me up here.

Also here...does anyone know if having auto immune disease can affect Lyme's disease tests...in other words create false positive or false negative? If that is true...that might be the argument the insurance company is going to use on you. Usually there are more hard line test you can do that will ultimately prove it one way or another. Like how SLE patients often due false positive on STD or TB tests.same idea as those.

GOOD luck ...i am sorry they give you such a hard time! lg

Rachel Simpkins said:

Elisa Test is test for Lyme disease,from what I've read,Garlic in large amounts is a Lyme disease antibiotic to HELP get cured along with treatment...this has really got me wondering because you open my back door and walk into a forest! We even had a deer running thru our CITY streets and it looked Pretty amusing seeing Rudolph in the middle of a main intersection at a red light.....