question about Bells Palsy

[philamom]

I ran into one of my daughter's classmates mom today who looked upset. When I asked her if everything was ok she told me her daughter (age 9) has Bells Palsy. I asked her if she was checked for lyme and she said she tested negative (shocking right). Her doctor told her it was probalby from Herpes Virus. I told her it may well be, but that she should not rule out lyme until she tests with a more reliable lab. She's going to call me over the weekend for the info. My question is- if from lyme, what stage does it usually occur? thx

[philamom]

She just sent me an email and I asked if I could post it here. You guys are so great with explaining this complex disease - could you help me out with some responses? Thanks everyone!

It's my daughter's birthday so I am busy with b-day plans and also have relatives coming on Sunday from Florida to stay with us for a few days. Can someone post a link explaining how a rash doesn't need to look like a bullseye--for lyme. thx again!!

 

 

Hi Melinda:

 

Here is how everything started.

 

Before end of the school, Rosie came home and her left hand was swollen triple size, I asked her what happened, she told me she did a card well (don't know if I spell it correct or not) on the school yard (lawn) and got a thorn. Her hand got better within couple of days. The second week she came home her left hands swollen triple size again, she said she did a card well on the school yard. I thought she might got poison ivy. Then summer starts, one day she said it was too hot and she wanted go to the sprinkler, she laid on the front lawn for about 15 mins. At night she started developing bad rashes, and it got really bad that she has to stay home. I took her to see the doctor, the nurse practioner told me that she might have allergic reaction to some thing she touched because the rash looks like hives. So she told me to give Rosie allergy medication, and I did, with the medication she got better after 2 days. then two weeks after the rash, Wednesday she complained to me that her neck hurts and she had some fever at night, Thursday she said her neck still hurts little bit, but she started to have cold sores in her mouth. I did not pay attention and through she was too tired because of three days gymnastic class at night. Sunday night she told me she can not close her left eye and her face was drooping. I took her to CHOP ER on Monday morning; she was diagnosed to have Bell's Palsy. because of her cold sore (the HSV virus is one of the cause of BP and so is the Lyme disease) and her rash, ER requested test of lyme disease and HSV virus, HSV virus came back positive but Lyme disease came back negative. So she was treated by prednisolone and acyclovir, the two typical drugs to treat the BP. right now she is done the medication and starts to recovery (today is her 12 days). for some reason I still have the feeling that she might have lyme disease because it matches the lyme disease symptom, rash first then couple of weeks late she has BP. That's typical symptom of lyme disease. but her rash does not look like lyme disease rash (bull's eyes). she has been very tired and sleep like 11 to 12 hours a day. I tried to talk to doctors (ER and pediatrician), but did not get much information. If you have more information about lyme disease and how to diagnose this, please let me know. Thanks a lot.

Edited July 29, 2011 by philamom

[lyme_mom]

First of all no more steroids!!! My son had Bells palsy and Lyme and I was told that BP in children is almost always Lyme. They never considered giving my son steroids fortunately but we got a lot of bad advice from regular doctors. BP fro

Lyme means u need two antibiotics to corner the Lyme-doxy and ceftin for example. In our sons case it was too little too late and he needed a picc line. Get to an Ilads llmd immediately and do whatever you need to keep her on antibiotics until u get there. The palsy went away and my son recovered from Lyme but it took 2 years and 3 months. Sounds like ur daughter got bitten by a tick while doing cartwheels in the yard. I would take every precaution that this is Lyme until proven otherwise. Definitely nonmore steroids tho. Good luck and feel free to pm me w questions.

Edited July 30, 2011 by lyme mom

[wesimkins]

I dont have any experience with a child and Bells Palsy, however I was diagnosed with Bells Palsy in April, along with many neurological symptoms that came in the upcoming weeks. I was told it was most likely MS ( mother has it ...maybe Lyme?) anyway I also slept for ridiculous amounts of time that first month. Recently was diagnosed with Lyme via Igenex. This was after a negative Western Blot ordered by my MD. I would suggest the Igenex test. I hope she finds a doctor who can help her soon.

[MichaelTampa]

I have also heard from more than one doc in the lyme world that bell's palsy is essentially/almost always lyme, and so do recommend assuming that unless/until there is very strong evidence to the contrary. As far as what stage that means, I have not heard anything about that, but, generally, lyme can progress very slowly or very quickly, and I can't think of why development of bell's palsy would be different in that it could happen early on or late into it.

[911RN]

but her rash does not look like lyme disease rash (bull's eyes). she has been very tired and sleep like 11 to 12 hours a day. I tried to talk to doctors (ER and pediatrician), but did not get much information.

 

 

You can google EM rash of Lyme's and see examples. I know from my experience in the ER- when child/adult has developed Bell's Palsy from Lymes- their Western Blot tests have come back positive. I have had two recent cases in the last month- 1 in young adult in 20's, another in a young child about 9. Another child about 5 came in very ill- high fever etc. with what appeared to be hive like rash- multiple EM's without classic bull's eye appearance which actually ended up being LD. While, I understand folks are drawn to the Igenex testing, Western Blot is not a totally useless test. I certainly see enough WB positives in those we have high suspicion of LD- confirmed by THIS testing. It is a screening mechanism and further testing/treatment/evaluation/follow up is usually indicated based on that result.

 

I would suggest a repeat LD testing in a month or so after completion of steroids just to assure a negative. Sometimes, it can take awhile to sero-positive convert. Then, if not convinced- go with the Igenex testing.If agreeable by doc- may not hurt to just have a 3 week course of antibiotics just to "cover" for LD. Most docs would agree with this tactic.

 

NOT all BP is LD related- viral infections are common triggers- HSV- as you said was the case for your daughter's friend or Epstein Barr Virus (same trigger for Mono). These viral illnesses cause extreme fatigue. They need to be allowed to REST for best outcome and full recovery. B vitamins may also be helpful for facial nerve recovery.

[philamom]

Thanks all! I met with her today and gave her the info for Igenex. She's going to start with just the Western Blot Igm/Igg. Her daughter is now complaining of some back pain as well, which I guess could be partially related to the nerve involved.

 

911RN- I suggested she request a copy of the labs they did in the ER. If it was a negative Elisa they may not have ordered the Western Blot, and the Elisa tends to miss most true cases. Do they typically run both the Elisa & WB in the ER?

Edited July 30, 2011 by philamom

[lyme_mom]

I have also heard from more than one doc in the lyme world that bell's palsy is essentially/almost always lyme, and so do recommend assuming that unless/until there is very strong evidence to the contrary. As far as what stage that means, I have not heard anything about that, but, generally, lyme can progress very slowly or very quickly, and I can't think of why development of bell's palsy would be different in that it could happen early on or late into it.

The reason bells palsy would worry be more than say knee pain is the high possibility that the lyme is in the spinal fluid. And of course facial paralysis is pretty horrible compared to joint pain. My son started to get tingling down his right arm while on oral antibiotics for BP and that is why Dr J advised a picc line, to stop it. Of course it could be bartonella and we will never know whether my son's was caused by lyme or bartonella. THey told me that you need to kill lyme in the blood and in the tissue to get at the lyme in the spinal fluid/head. We presume my son had bartonella and he responded to bartonella treatment so our llmds believe that either could have caused the BP. Of course you can develop BP overnight or after having lyme a while. In my son's case he likely had lyme a while but had recently gotten a bug bite behind his right ear. The location of the bite matters sometimes and often affects what is closest to it.

[philamom]

I have also heard from more than one doc in the lyme world that bell's palsy is essentially/almost always lyme, and so do recommend assuming that unless/until there is very strong evidence to the contrary. As far as what stage that means, I have not heard anything about that, but, generally, lyme can progress very slowly or very quickly, and I can't think of why development of bell's palsy would be different in that it could happen early on or late into it.

The reason bells palsy would worry be more than say knee pain is the high possibility that the lyme is in the spinal fluid. And of course facial paralysis is pretty horrible compared to joint pain. My son started to get tingling down his right arm while on oral antibiotics for BP and that is why Dr J advised a picc line, to stop it. Of course it could be bartonella and we will never know whether my son's was caused by lyme or bartonella. THey told me that you need to kill lyme in the blood and in the tissue to get at the lyme in the spinal fluid/head. We presume my son had bartonella and he responded to bartonella treatment so our llmds believe that either could have caused the BP. Of course you can develop BP overnight or after having lyme a while. In my son's case he likely had lyme a while but had recently gotten a bug bite behind his right ear. The location of the bite matters sometimes and often affects what is closest to it.

Oh...for some reason I thought BP was a symptom linked to Bb(lyme). I know you usually don't just have lyme, but I didn't realize it could be a symptom of a co-infection. All of the co-infections?

[911RN]

Oh...for some reason I thought BP was a symptom linked to Bb(lyme). I know you usually don't just have lyme, but I didn't realize it could be a symptom of a co-infection. All of the co-infections?

 

 

 

BP can be a manifestation or symptom of LD however, BP is a disease all in its' own that can be caused by others triggers (viruses, tuberculosis, MS etc.) The symptoms of BP are caused by irritability and inflammation of the facial nerve. It should be looked at as just that- a symptom for further evaluation AND disease that also needs treatment. As a symptom to be investigated that, perhaps, something else more sinister is going. As a disease (BP) that,itself, must also be treated (with steroids). Not often, but sometimes- permanent facial nerve damage can occur. Folks must also be concerned with developing corneal ulcers and eye issues if they do not use natural tears, tape lid closed at night etc. during the course of the illness. Steroids bring about quicker resolution of BP symptoms to limit the amount of facial nerve damage and any further negative sequalae with the facial nerve.

[911RN]

Thanks all! I met with her today and gave her the info for Igenex. She's going to start with just the Western Blot Igm/Igg. Her daughter is now complaining of some back pain as well, which I guess could be partially related to the nerve involved.

 

911RN- I suggested she request a copy of the labs they did in the ER. If it was a negative Elisa they may not have ordered the Western Blot, and the Elisa tends to miss most true cases. Do they typically run both the Elisa & WB in the ER?

 

[b]Our hospital lab does- I would think most hospital labs have this in place. It is pretty standard procedure. Lab does the ELISA screening which gives reference ranges for negative, equivocal or positive results. If equivocal or positive- it runs the progressive Lyme report or Western Blot. If negative on ELISA screening- it stops right there- nothing further is done.

 

I'll quote exactly what is written on every lab slip produced for Lyme titer:

 

"As recommeded by the FDA, all samples with positive or eqivocal results in the ELISA screening will be tested by Western Blot. Positive or equivocal screening tests should not be interpreted as truly positive until verified as such using a confirmatory assay. The screening test and/or WB for Lyme antibodies may be falsely negative in the early stages of Lyme disease, including the period when erthema migrans is apparent."

 

That's why I suggested since this was a BP symptom she presented (not classic Lyme sxs) to have testing repeated in a month or so to allow time for antibody seroconversion if it really was LD. Her docs thought BP was HSV related- which it very well could have been/is. It would still be prudent to "clear" Lyme as culprit. Mom is doing the right thing--she should be able to get affirmative or negative on the Lyme at this stage with WB IgG/IgM. 3 week course of antibiotics would do the same thing to calm fears and would probably be a lot cheaper:) Nip it in the bud if it was LD.

[philamom]

Ok--not sure why my responses are not posting. I apologize if this is a duplicate -or triplicate post (lol).

 

What I meant to ask - If BP is a manifestation of Lymes disease, can it be caused by one of the tick borne co-infections (bart,babes,echri), as well as lyme(Bb)? Now given, I know that Lyme usually doesn't travel alone. Wondering for testing purposes.

 

Thanks all!

[PhillyPA]

My son had a bells palsy when he first got sick. It actually wasn't an official bells palsy. It was more like facial twitching. My husband is a physician and when it happened he said it looks a little like a bells palsy but he did not have facial drooping. CHOP did a spinal tap on my son to check on for lots of things, one of them being Lyme disease. Logically, one would think that at the height of neurological symptoms, at acute onset, Lyme disease would be present in the spinal fluid. We didn't stop there and have had many Lyme disease tests since then but that is another story. Recently in June, we had his spinal fluid checked again at CHOP.

 

Anyway, my point to this reply is that many things can cause a bells palsy. My first reaction to this, seeing that she was positive for Herpes Virus, is that giving steroids was the right thing to do. Although I am well aware that Lyme symptoms and other disease symptoms overlap, we have to be cautious. Herpes virus, with swelling hands, with neck pain, could lead to Herpes encephalitis which can be devastating. I think she was right to go on the steroids quickly. If it turns out to be Lyme, she can cross that bridge later. My opinion is that you have to treat the worse case scenario first which is Herpes encephalitis. Has she had an MRI? I can't believe that CHOP wouldn't do an MRI to rule out possible Herpes encephalitis. That would be my number one worry at this point.

 

A friend of my family had a bells palsy and a bulls eye rash all in one weekend. Within 24 hours she got so sick she thought she was going to die. She was violently ill. It came on so very quickly. I can't believe that she didn't go to the emergency room. That she waited until Monday to go to the doctor. People just don't get the seriousness of Lyme disease. My God, If I saw the bulls eye rash and my face started to droop, I wouldn't continue to make dinner and wait it out. Luckily, she is all better now. She had a course of antibiotics that took care of it. I find it so interesting that for some people a regular old course of antibiotics take care of Lyme and for others it is a battle. I know at least ten people who got the bulls eye rash and then recovered quickly with antibiotics. I think you are lucky if you get the bulls eye rash. I think that means that you have a working immune system and that you will respond well to antibiotics.

[philamom]

Thank you 911RN and PhillyPA. I appreciate your input. I will mention the Herpes encephalitis. She has an appt. with a neurologist next Friday so I will tell her to bring it to the doc's attention. Her Mom said the entire side of her daughter's face was drooped down 2 inches. 2+ weeks later her face is doing better-only noticable when she smiles and eats, but she is very tired and is complaining of back pain. When it first happened she had neck pain and a severe sudden pain at the back of her head (where men have a bald spot) but it went away. I didn't mention anything about the steroids at this time. She (and I) just can't understand why they won't do a round of antibiotics to cover all bases. We live in PA (#1 state for lyme cases right now), there was a rash (just not bullseye), and it was an optimal time for getting lyme (June). My daughter said many kids were getting ticks on them at the end of the school year...I even posted it at the time. There is a partial wooded area that butts in to the play area. Many of the children go into the perimeter. I think I'll have a talk with the principal.

 

thx again

Edited July 31, 2011 by philamom

[lyme_mom]

My son had a bells palsy when he first got sick. It actually wasn't an official bells palsy. It was more like facial twitching. My husband is a physician and when it happened he said it looks a little like a bells palsy but he did not have facial drooping. CHOP did a spinal tap on my son to check on for lots of things, one of them being Lyme disease. Logically, one would think that at the height of neurological symptoms, at acute onset, Lyme disease would be present in the spinal fluid. We didn't stop there and have had many Lyme disease tests since then but that is another story. Recently in June, we had his spinal fluid checked again at CHOP.

 

Anyway, my point to this reply is that many things can cause a bells palsy. My first reaction to this, seeing that she was positive for Herpes Virus, is that giving steroids was the right thing to do. Although I am well aware that Lyme symptoms and other disease symptoms overlap, we have to be cautious. Herpes virus, with swelling hands, with neck pain, could lead to Herpes encephalitis which can be devastating. I think she was right to go on the steroids quickly. If it turns out to be Lyme, she can cross that bridge later. My opinion is that you have to treat the worse case scenario first which is Herpes encephalitis. Has she had an MRI? I can't believe that CHOP wouldn't do an MRI to rule out possible Herpes encephalitis. That would be my number one worry at this point.

 

A friend of my family had a bells palsy and a bulls eye rash all in one weekend. Within 24 hours she got so sick she thought she was going to die. She was violently ill. It came on so very quickly. I can't believe that she didn't go to the emergency room. That she waited until Monday to go to the doctor. People just don't get the seriousness of Lyme disease. My God, If I saw the bulls eye rash and my face started to droop, I wouldn't continue to make dinner and wait it out. Luckily, she is all better now. She had a course of antibiotics that took care of it. I find it so interesting that for some people a regular old course of antibiotics take care of Lyme and for others it is a battle. I know at least ten people who got the bulls eye rash and then recovered quickly with antibiotics. I think you are lucky if you get the bulls eye rash. I think that means that you have a working immune system and that you will respond well to antibiotics.

 

Yes bartonella can cause bells palsy too and it is just as hard to test for. Lyme does not always show up in spinal fluid and our llmds did not advise us to get a spinal tap for our son w bells palsy because he had very positive Lyme test results. They told us that they would treat for lyme regardless of whether or not the spinal tap would come back positive for Lyme. You can get false negative results for Lyme w a tap. I think the tap is looking for antibodies to Lyme, not the bacteria so there r many reasons why it can be negative. He did get a scan in the ER when he developed BP-a cat scan I believe. The ER dr took one look at our son and said it's probably Lyme and hewas not Lyme literate.Pamela Weintraub discusses the possibility that persons who get a Bullseye rash may have a milder form of Lyme. That is interesting because there are 300 types of Lyme and it continues to change apparently. Of course an individual's immune system status is also very important as u point out. I am glad my son didnt get steroids because he was so sick as it was. I don't understand how steroids are helpful? Is it to stop swelling?