After 3 wks of IV, my symptoms seem worse, not better, especially my speech and energy level.

Another symptom is a weird thing going on with the air flow with nose and mouth, which also causes my voice to be very nasally. Anyone experience this? Is that part of Bells Palsy too? Normally, I have a very deep voice that projects. I wonder if I'll ever get it back again.

I've also noticed a difficulty to breathe through my nose - like my nasal passages don't allow as much air through or something.

I am happy to say that after 2 1/2 yrs of having it all the time I am finally only getting it on occasion. The IV anti really helped me with the Bells palsy but I remember not noticing much changes until awhile after I was done with the IV's.
I also have trouble with my tongue. I can not stick it out all the way and move from side to side. Unfortunatly this has never gotten better. The nasal stuff... all I had was a lot of shortness of breath but not what you are describing. I have learned over my 4 yrs of treatment that LD can and will affect all the cranial nerves and this probably explains the nasal problems.
The slurred speech also comes and goes.. it seems to worsen if I am tired or forget to take medicine to help with the tremors I get. It's kind of like it's hard to form the words you want to say so everything comes out garbled!

hope this helps some... hang in there

lynne

PS After 1 1/2 yrs off anti i am scheduled to start IV treatment in about a month. I have had a recurence of many symptoms so here I go again.

Hi ALSLYME,

Just want to encourage you about your Bell's palsy & speech. It does get better.

I can empathize with you totally. In my early research of LD, I only came across a few stories of LD with speech problems until I found Lymenet.

I went 13+ years without a diagnosis. I've had about 20 months of ABX including l80 Rocephin injections for my brain.

Also, have had 2 bottles of Mepron & Zithromax for Babesia. (Probably need more)

I'm now on Minocycline for my brain, but am ever so slowly ramping up to 200 mg daily. I also take Amantadine (anti-viral) which also helps dopamine in the brain; daily B12 injections.

While you're on ABX, try to remember your LD symptoms will worsen. (Sorry if I'm repeating stuff you already know.) That's a sign the meds are working. I would worry more if nothing happened.

But that's what's so hard------to get meds to the brain. There are few meds that do penetrate the blood brain barrier.

Sometimes improvement is not seen until you've completed the ABX. My symptoms are affected by each new treatment.

Also, ABX themselves make you tired. My now retired LLMD jokingly told me he could fix my energy problem by advising me to quit the ABX, but that would send me spiraling back down.

The important thing is with IV meds like Rocephin or Doxy, is that it's going to the brain. Then, of course, there are neurotoxins to deal with eventually.

Add all that to the possible tick borne co-infections, mycoplasma, viruses, possible heavy metal toxicity like mercury, lead or aluminum & there's a lot going on .

Babesia can affect the brain and Bartonella causes severe neuropysch problems.

LD damages the blood brain barrier & ultimately other stuff passes through that shouldn't be there.

Anyway, I'm rambling, but I wanted to say to give it time. Things will gradually get better.

My speech problems came on very insidiously in the late 1980s. My voice was like a battery that was running down. The longer I talked, the weaker my voice became.

I was clipping off the ends of my words; or, my voice would catch. And yes, it took a great deal of energy to get the words out-----like I was straining from my chest to get out the words.

Lack of sleep and hunger worsened it. Stress would knock my voice right out. I still hate the telephone.

Believe me, I've had more than a few looks because of my voice. The minute you open your mouth-------folks don't think you're too intelligent. It hurts alot.

I was eventually diagnosed with essential tremor of the head and voice by a movement specialist disorder neurologist in Houston.

I read in Hanna Kroeger's Vitamin-Mineral Locator book that sulphur strengthens the voice.

I went to the health food store & said, "Where's your sulphur?" I had just started reading nutrition books.

I tried the sulphur-based amino acid, NAC, N-acetyl Cysteine with Vit C & B6 on empty stomach. It did make my voice stronger though I didn't know why. (It also builds your immune system.)

Later, I learned it chelates mercury. So I had my mercury amalgams removed sequentially by a biological dentist. I also did chelation therapy to get rid of the mercury, lead & aluminum.

I'm sure I need to do more now, but I can only pay for so much treatment at a time.

I was better, but the face & left ear pain grew worse. Only ABX have helped this.

I still take NAC to detoxify the liver & love it.

I wrote about my 13 years of facial pain in the link below. It's way too long, but typical Lyme writing style----rambling on & on.

http://flash.lymenet.org/ubb/Forum1/HTML/027505.html

Hang in there. It really is worth it. If I can help, let me know.

Take Care,
Jan

Many of the symptoms - there were times when I could not swallow and that caused severe panic.

Thank God and my good doctor, it is all gone now. But let me tell you, it only cleared up totally when I addressed my dental issues:

mercury fillings, bridges, crowns, root canals and dental infections/cavitations in the old wisdom teeth sites.

It all took several years and a lot of detoxing. My antibiotic intake was limited to 6-8 months spread over several years. Not more.

My husband went a similar route. I passed the Lyme to him after my tick bite. He ended up with Parkinsonism in a wheelchair. When we finally addressed the teeth issue, he got well. No more wheelchair, no more walker. He is doing all things of everyday life, driving, gardening, happy.

Inform yourself. Also read some of my posts.

The left side of my tongue, and even my throat feels numb. I also have left-sided weakness in my body.

I have been on oral abx for a little over a year, and the Bell's Palsy is better - but at times it gets worse too, when my other lyme symptoms flare up. But I do see improvement.

ALS was something my LLMD talked to me about on my first visit - not that he thought I had it - but that he believes that it could be untreated lyme.

He said my fam. doc probably would have ended up diagnosing me with it because of the symptoms I was having.

It didn't affect my voice but with lips that didn't work and a numb tired tongue it was hard to talk. It affected my sense of taste too and my hearing was turned way up.

I got a lot of help from some BP discussions found via a google search and various Links on peoples online BP diaries.

My face started to recover after about 4 weeks. My eyelid and lower lip woke up first. I had lots of pain when this happened and took tylenol with codeine for a week. It was very intense but I was so happy to be getting a symetrical face back. I read postings of similar experiences having pain even though Drs said there wouldn't be any.

My upper lip, nose, tongue and cheek are still finishing their long wake up process 5 months later. No real pain though. People don't notice anything and think I look totally back to normal. I notice slight differences and still feel funny.

When I'm tired or stressed my eyelid gets heavy and my tongue numb & shaky. It is getting much better though and I'm continuing to improve. Improvement comes in unpredictable spurts and then sometimes reverses and gets worse before improving again.

Seeing the Chiropractor regularly helped a lot. I would get some feeling in numb parts immediately after an adjustment. I have no doubt that without the Chiropractor my recovery would have been much slower.

Be patient, Good Luck!
h&s

i have to be thankful that i had a bout of bells palsy because that led me to a neurologist who did a western blot test.

i knew about bells palsy because years ago my mother's friend had it. she had it for a long time. my facial muscles started twitching for a couple of days before it got numb.

i was very lucky as i went to the doctor the next day, and started treatment immediately. the right side of my face was paralized. the neurologist put me on some anti-malarial drug and a steroid (3 days) and something else - an anti-viral i think.

in my case he treated the bells palsy as a reactivation of the shingles virus (herpes zoster, same as chicken pox), though he suspected lyme disease. it only lasted about a week or 10 days.

he said if it is caught soon enough and treated within 3 days, the outlook is very very good, as he proved with me. funny, my cousin had it at about the same time. we both showed up at the family reunion with an eye patch

he did not see a doctor for a week after his symptoms started. his doctor gave him the same treatment i believe, but he didn't get over it for a couple of months. and had some residual pain for a while after that.

the key i believe is to treat it quick.

the bones in my face and head are a little bit different now i suppose from the muscle tension on one side only for that time. i have had some cranial adjustment done and need more.

the sinus cavity on the right side does not drain now because of the bone positioning - i think - so i use a sinus rinse every day. a kit, an 8 oz bottle and salt packets. got mine at the drugstore for $10. it seems to be helping.

the brain scan showed the sinus cavity was completely full so i am taking extra care there. also inhaling some essential oils and herbs once in a while.

that is probably something you should pay attention to.

one strange thing i thought was that for a couple of days before the twitching started, my husband complained about my breath smelling like chemical of some kind. i think my case was possibly a neurotoxin but i am guessing.

good luck to you, and everyone else suffering with it. it sucks, plain and simple. i am so glad i got to a good doctor, quick, and my suffering from it was short.

God Bless. lori

(gigi) The dental issues are there too! It was my Dentist that referred me to a neuro not understanding why my speech was still slurred and my tongue sluggish. I've had so much dental work done over the last 2 yrs and my Dent. didn't understand, after everything, why I still felt like there was infection & pressure in my jaw/tooth area - even after my tooth was extracted. I'm planning on getting my fillings replaced too. I will say after ABX, I no longer have the jaw pain or pressure, but the slurred speech has yet to improve.

Gigi - do you think I'll pass lyme onto my wife? I've heard this, but didn't really believe lyme was sexually transmitted. Does everyone's spouse get ABX even if they show no symptoms?

Does anyone have an opinion on going to a speech therapist? My LLMD suggested it, but part of me wonders if this is because he wants me to learn to adapt to this, rather than giving me hope it will go away. I sound drunk and/or mentally retarded when I talk - this is not something I can learn to adapt to very well.

(Artnsoul) If it's the same article "Hidden Plague, People mag May 2003, I met that guy. He and I both were dxd with ALS, by 2 of the most renowned neuros in our area (he at Hopkins, I at GW), and neither of them even tested us for Lyme before telling us we were going to die of ALS. His story gives my wife faith that if he can get better, so can I. He happened to have bi-lateral palsy and was on a feeding tube before he got treatment. Today, you'd never know he was sick (3 yrs. later).

I am very thankful for this site and it does help me to hear your stories.

God bless us all!

Voice and swallowing cleared first with abx treatment, bells palsy is taking longer (20mos) while on flagyl and zithromax. I've done all oral abx.

I was a lucky one. Mine started to slowly reverse after only ten days.

Make sure you use the back of your finger to manually blink. Patch it at night or when it feels irritated with a self stick disposable eye patch and cotton ball to weigh down the lid. Use the gel eye drops found at any drug store and hold the eye shut until it kind of glues the eyelid shut before putting the patch on.

Always keep the eye lubed with artificial tears-not eye drops! The thick stuff seemed to keep the eye closed and soothed longer than the more runny lubricating drops. It seems unnatural but it works better!

Have an eye doctor check your eyes if they really hurt because it may be an indication of an infection or damage.

Don't try to exercise your face until you notice you are getting some facial muscle control back. It will only frustrate you. As you feel you can, slowly make faces and try to pronounce words right even if you can't. Every day practice two or three times for short sessions of about five minutes. That's all it will take.Whistling and p and f take longer to do. Most people recover fully.

I still have some strange hook up of my eye and the tympany nerve that occurred when the nerves were regenerating. Now, when I close my right eye, I hear a quiet rumbling sound in my right ear.

Other than that I'm over that...it took about a month for almost full recovery.

If you trust your dentist to do this work the way it needs to be done, don't put it off. You can still be on abx or whatever program you are on. Just, please don't wait but have someone very knowledgable take a good look. Someone that does this "all the time".

My doctor suggested to my husband "gently", way too gently, to get serious about the teeth. We did what we thought would do it.
It didn't stop the disease. He finally ended in a wheelchair and could not move any more. That's when we went to the best guy in the country to do the cleanup in the mouth. Seven months after that, my husband got out of his wheelchair and is now fine. It took a lot of work and it was expensive.
It's expensive, I know. But what is the alternative?

We learned that if the teeth are a major problem, though there were some ups in between, he really never was able to clear out the toxic load, neurotoxins of all kind, and therefore had no chance to get well.

I myself had the same experience, and once I addressed the dental problems, I started to improve and am now very well having a better life than ever. I am only posting on Lymenet to share what I have learned. Many people do not like it, but so be it. Some have benefited and that's enough for me.

Oh, forgot.....

Gigi - do you think I'll pass lyme onto my wife? I've heard this, but didn't really believe lyme was sexually transmitted. Does everyone's spouse get ABX even if they show no symptoms?

In my opinion, and also the opinion of my doctor for certain and without a doubt, it is passed on in body fluids. Even if you do not believe what I say, you know how to best prevent it.
My husband was perfectly healthy until about 1-1/2 years after I got an insect bite giving me the bull's eye, then he turned slower and showed the first symptoms and was diagnosed with Parkinsons. Our doctor of course tested him with ART; he had seen it already developing in my husband during our visits. After the first five minutes of ART testing, he found aluminum toxicity, five different metals in his mouth from different alloys causing electrogalvanism sending abberant signals to his brain, and Lyme.
But even at that point, it took almost six years to get all the majority of neurotoxins out and the Lyme from doing more damage.

My doctor treats numerous couples for Lyme and chronic disease. The only difference between us was - my husband had motor dysfunctions, little knee pain. I had major pain problems requiring morphine, but basically no motor dysfunction. I had a giant brainfog, my husband had none.

It hits the weak spots. My husband had a skull fracture as a young man. At that very spot the aluminum deposit was found, and the Lyme and microorganisms also were found in the same area. With ART testing this is easily determined.

Hope this helps.

Take care.