question about Bells Palsy

[PhillyPA]

The problem is that rashes occur with viral and bacterial encephalitis as well as Lyme disease. Positive test results make decision making so much less complex.

[PhillyPA]

Lyme Mom, I hear what you are saying. Everyone has their own journey. When my son got sick I refused to put him on steroids for a full year. I thought it was Lyme. He was treated for Lyme with IV antibiotics even though his Lyme doctor said he tested negative for all tick borne diseases. This was a "just in case" treatment. More mental torture in my own brain. Me thinking it was Lyme. All test disagreeing. I test for Lyme all of the time. I talked to his lyme doctor and he said stop it. Go down a different path.

 

For my son steroids are awesome. They do reduce the swelling and I am sure it does some other stuff to the immune system too.

[911RN]

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.

 

 

I agree with everything you are saying here:0) The 20 year old kid we had come into the ER did not come until about 5 DAYS after his facial droop!! 5 DAYS! He was running low grade fevers, had jaw pain, body aches etc. He was Lyme positive. Never had any history of tick bite, EM rash but he did come from a high prevalence LD state. Not that he appeared to be the sharpest knife in the drawer- not sure he was looking for or would have noticed the tick or rash??? He basically came in because he was having difficulty eating and drinking- stuff would dribble back out of his mouth- OMG! I was like when was your first clue there was something wrong- day 1 when you started to look like you had a stroke or day 5 when you are having problems eating!I agree- my experience has been if you have the classic symptoms and are treated as close to the actual LD exposure- seem to have good recovery with no long term negative effects.

[911RN]

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

 

Glad she is doing better. The fatigue can last up to 6 months or a year- just like with Mono. Glad she is seeing Neuro- this was an acute event. Most acute events get full work up, diagnostic certainty of diagnosis,treatment and best case recovery by docs. Easy fixes- what they are best at doing:)It's those vague, long term, muddled cases (like some of ours) that have us all pullling our hair out trying to help our kids to gain medical recognition of the symptoms and treatment!

[FallingApart]

So, two inputs here:

 

I was actually in the hospital when my BP came on and was treated absolutely immediately. And I am one of the lucky few who has not recovered!!! So, I don't know that you can say that quick treatment necc helps. Hopefully it will for others but it didn't help for me. I'm still hoping it may come back but it has been almost 6 years!!! .

 

I can't believe you all know so much about BP. YOou are a wealth of knowledge that I was unfamiliar with and I thought I knew a lot about BP. Can the pp who said something about Lyme being in the blood and/or spinal fluid elaborate on that? I have other neuro issues as well. We have considered doing a spinal tap on me 3 or 4 times but have never done it due to scheduling problems (2 young kids and no family around to help out). What else should I know?

 

Thanks!

FA

[lyme_mom]

How long were you treated and was it by a llmd? It took my son about four months to get rid of the palsy. He was on much higher doses of antibiotics than my pediatrician would have prescribed and he had a picc line. Having the right combo and dose of antibiotics is important. Also BP can be caused by bartonella so maybe they should try treating you w rifampin to see If that helps. Our llmds determined by process of elimination that my son had bartonella and it may have caused the palsy-we will never know. After a month of a picc line w rocephin my son still had headaches so they assumed he had bartonella, added rifampin and within days the headaches went away. All bartonella testing was negative for him repeatedly. I would just get another opinion from a llmd to see if you can get rid of the palsy. If you still have other symptoms you may not have been treated long or thoroughly enough. My son needed 2 yearsand 3 months of treatment even though the palsy went away in the first six months. You treat until all or most symptoms have been gone for two months. You may already know all this. You need two antibiotics to kill the Lyme, often three actually. Doxy kills it in the blood but it can burrow in tissue -like in the brain. Iv rocephin is good because it crosses the blood brain barrier well but it is not enough if there is bartonella. It's very complicated but a good llmd will know what to try next for you.good luck!

[911RN]

So, two inputs here:

 

I was actually in the hospital when my BP came on and was treated absolutely immediately. And I am one of the lucky few who has not recovered!!! So, I don't know that you can say that quick treatment necc helps. Hopefully it will for others but it didn't help for me. I'm still hoping it may come back but it has been almost 6 years!!! .

 

I can't believe you all know so much about BP. YOou are a wealth of knowledge that I was unfamiliar with and I thought I knew a lot about BP. Can the pp who said something about Lyme being in the blood and/or spinal fluid elaborate on that? I have other neuro issues as well. We have considered doing a spinal tap on me 3 or 4 times but have never done it due to scheduling problems (2 young kids and no family around to help out). What else should I know?

 

Thanks!

FA

 

Have you not recovered from the Bells palsy symptoms or LD? Spinal taps are often done for more definitive rule out for LD, however, I have read this is still not 100%. I have not seen spinal taps done for BP unless docs were concerned with possibility of meningitis, encephalitis etc- fever, neck pain, persistent headache. BP can be a manisfestation of MS- has that been considered since you state you have many "other neuro issues?" Have you had an MRI? Can take 10 years for diagnosis of MS- from insidious onset of symptoms to clear cut diagnosis. Not that I would wish MS on anyone:(

 

Recovery from spinal tap should not be longer than 24 hours. Lie flat as much as possible after test to prevent spinal headache etc.It may be worthwhile to try to schedule. Testing can provide needed answers. Knowledge is power.

[philamom]

Well, the mom's appointment today went like this-

 

You don't need to worry about lyme because:

-your daughter is getting better, not worse

-only 10% of ticks carry lyme

-your daughter's ELISA test came back negative

-the more you test, the more likely you are to get a positive result

 

ELISA results:

IGM 0.79 (range 0.00-0.79)

IGG 0:23 (range 0.00-0.79)

 

Doctor will not order Igenex. Doctor will not prescribe antibiotics.

[FallingApart]

philamom, that makes me so mad for that mom! What is she planning to do?

 

No, they aren't wanting to do the spinal tap for anything related to the BP or Lyme. This is my regular Neuro. I have such severe migraines and they can last up to 6 weeks. I was hospitalized for 2 days with the last one for continuous treatment and even that didn't break the migraine. THey have considered me for MS, Lupus, menengitis, and an anyuerism. With each one they have want to do a spinal tap. I'm not planning to pursue the BP or Lyme any further with the Neuro, I am just v interested in this discussion.

 

THanks so much!

[lyme_mom]

Well, the mom's appointment today went like this-

 

You don't need to worry about lyme because:

-your daughter is getting better, not worse

-only 10% of ticks carry lyme

-your daughter's ELISA test came back negative

-the more you test, the more likely you are to get a positive result

 

ELISA results:

IGM 0.79 (range 0.00-0.79)

IGG 0:23 (range 0.00-0.79)

 

Doctor will not order Igenex. Doctor will not prescribe antibiotics.

Oh that is so frustrating!! Sorry to hear that. I just heard of another case of a very young child developing bells palsy and the doctors giving the child steroids only to discover that the child has lyme. Those screening tests are worthless unless the child is glowing with lyme. There is only so much you can do to try and spare people the nightmare of dealing with a long term treatment for lyme, especially when their doctors tell the parents that they have nothing to worry about. My pediatrician repeatedly told me I had nothing to worry about either and we missed the early signs of lyme six months before the palsy developed. Now I will always get a second opinion from an alternative source like our llmd or holistic md.

[philamom]

It is frustrating! I don't know why the doctor wouldn't at least be open to the idea of re-testing. The ELISA is at 0.79, only one digit away from being positive. I hope she is willing to get a second opinion. It's amazing -- you can have acne and easily get antibiotics...but a rash and bells palsy - nope.