HealingWell
Search Close Search
☰

HELP! I'M GETTING WORSE INSTEAD OF BETTER AND THESE MUSCLE SPASMS ARE DRIVING ME CRAZY!!!!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/1/2011 10:34 PM (GMT 0)

cry   This is day 24 of antibiotics and I feel worse.  How is this possible?  I thought I was healing just a few days ago and then yesterday severe fatique set in and now it's taking everything in me just to get up.  Is this normal? 

Also, I know twitches are somewhat normal with this disease but I'm beginning to think something else may be seriously wrong!  My leg collapses from under me.  I don't understand why!  Is anyone else out there experiencing this?  Please help!

Posted 1/2/2011 1:24 AM (GMT 0)
Hi Willie,
First of all, I'm sorry that you are feeling worse! Unfortunately, I believe what you are experiencing is quite normal. Forgive me for not remembering, but this is your first round of abx, right?

My brain is really not working clearly tonight, so forgive me if I don't get this quite right, word for word. blush

Lyme Disease has three phases in it's life cycle, spirochetal, L form, and cyst form. about every 3 or 4 weeks, it's starts it's cycle again - as the spriochetal form.

It is in this form that the abx can kill a bunch of them. As they die, they release toxins. These toxins that are being released are what will either increase symptoms or can bring on new ones.

This is why I always suggest those infected with tick-borne illnesses detox, dry skin brushing daily (a soft, gentle brushing), and drinking all of the water that you can (well up to 4 quarts anyway!), preferably with lemon juice.

There are other ways to help your body to detox as well, but the things listed in the thread titled, "New to Lyme?...Start here!" are easy on the body, easy to do & most likely you will have what you need to start already in your cabinets.

The muscle twitches & spasms could be from either the infection or from the die-off from the abx doing their job.

I had & still get sometimes some pretty "good" muscle twitching & spasms from time to time. Twice I've managed to give myself a black eye!! smhair - Man! Was I ever embarrassed explaining that one!!

My legs will give right from underneath me from time to time as well, but since I was untreated & undiagnosed for many years - I have a ways to go.

There are medications that can help with that, but I would suggest that you do the epsom salt/peroxide bathes & soak - building up to 30 minutes at a time. At the bare minimum - they are relaxing to the muscles, at best it may greatly reduce them - without you having to take more pills!!

I do hope this helps some.
Posted 1/2/2011 11:41 AM (GMT 0)
If it helps any, my doc says the worse you feel now, the better you will feel in the long run. Here's to you feeling better.
Posted 1/2/2011 3:09 PM (GMT 0)
My leg also gives way from under me and it is scarey! I too feel horrible now and then but can pretty much tell when it's the cycle again and I've been on antibiotics for 20 months. however I too had for a long time undiagnosed so I have a ways to go too. But I do feel ALOT better overall so there is a light at the end of the tunnel. Try and think positive - it helps.
Posted 1/2/2011 9:42 PM (GMT 0)
Thanks Traveler for your response and your explanation about the cycles. It made it easy for me to finally understand how this disease sort of works. This is my first round of abx. I don't really know when I became infected, but I remember a rash about three years ago.

I laughed for the first time today when I read about the black eye you gave yourself! I'm sorry, but I thought it was so funny. I think I can laugh because I can relate. I've laughed at myself too. I've had a horrible time with my memory. I've left my car on and walked away three times! Just before Christmas I called my ex and told him he never have me one of our son's Christmas gifts. When he insisted that he did I accused him of not knowing what he was talking about. I looked everwhere in my truck and had him searching everywhere because it was expensive. On Christmas morning the first gift my son opened was the one I thought I never received. Not only did he give it to me, but I wrapped it myself the same day I called him to say it was lost. I wasn't sure whether to laugh or cry when my son waved the gift at me.
Posted 1/2/2011 9:49 PM (GMT 0)
Hello Springsjean! Thanks for your response. I can't believe you'be been on antibiotics for 20 months! I didn't even know that was possible. I know so little about this. Others on this forum seem to know so much.

I guess it was ignorant to think I was healed a few days ago. I felt so much like my old self only to then relapse and feel worse than ever. It was somewhat shocking.

You mentioned being undiagnosed for a long time. Would you mind telling me if three years is considered a long time with this disease? I sincerely don't know. How long did you go undiagnosed.

This is the scariest thing I've ever been through. I thank God for this forum. Until now, I had no one to comuunicate with about this.
Posted 1/2/2011 10:53 PM (GMT 0)
Willie0521,

Lyme's is the scariest thing I have ever been thru also. So many times I thought I was losing my mind and would have to be committed. Literally. Not something I talk about much.

I went undiagnosed for 30 years. Was told first I had low blood sugar, then severe hormone problems, then fibro, then thyroid,then severe hormones again, and then Lymes. I didn't 'fall apart' until 6 years ago. Had to quit my job, wasn't sure if at that point I was going to live. The first time I arrived at Hansa center (where I received treatment)the doctor wasn't sure I was going to make it either. It was very touch and go for me. I also had a lot of memory problems. Very foggy brained in the beginning.

There is a lot of ups and downs with this healing journey. Whether you choose abx or 'natural' treatment, there is still ups and downs.

You seem to have a wonderful attitude and a real desire to heal - that will take you a long ways.

thinking of you,
Wacko woman
Posted 1/2/2011 11:59 PM (GMT 0)
Hey Willie,
Please do feel right at home giggling with me! smilewinkgrin Sometimes, the only reason I post is to gt a little humor going!

Like you, I have had to live with the fact that I swore I did or didn't do this or that - I mean I would remember if I ate, right? Not always evidently!!! I have embarrassed myself sooo very many times!

I would like to heavily suggest that you down load the pdf version of Dr. Joseph Burrrascano's paper titled "Advanced Topics on Lyme Disease". It is fairly easy to understand, and it covers the co-infections a little as well.

The reason I am suggesting you read this is it will help you to understand soooo much about what is really going on & his suggested treatments. I didn't use his treatments, though.

Unfortunately 3 years is a long time to go un- or under-treated with tick-borne infections. Don't let that scare you though! Like Wacko woman, it has been many decades for me - four of them actually!! It is never, never too late to start treatment and to start to improve your health though!

Like a lot of LD patients (I affectionately call us Lymies), I had a time of severe stress that sent me into a tail spin with my health. Although before that I was plagued with smaller health issues.

Hang in there, Willie!! We are here to help you though this!!!
Posted 1/3/2011 5:04 PM (GMT 0)
Hi Wacko Woman! It scares me too. Especially when I have problems with my memory. I left my stove on twice and went to pick my son up from school. Thank God it was on low flame and I didn't burn the place down. It's also very frustrating when I can't remember how to spell certain words or where certain keys are on the keyboard. I'm normally an excellent typist and speller.

I can't believe you went undiagnosed for 30 years! I admire your strength! It's only been 3 years for me (not much in comparison) and It's been so difficult. I can't even imagine living with this for 30 years not knowing what is wrong. Kudos to you and to Traveler for your unbelievable courage!

I think it's even harder for us women when we're undiagnosed because for some reason most of our ailments are usually blamed on hormones. My mother kept telling me I was menopausal in spite of two OBGYN's telling me I wasn't. I am in my mid forties and I was told by someone else that it was old age. Can you believe that? I sort of thought about it for a while until I observed people who are 20-30 years older than I am living a full life with more energy and a better memory!

I read a little about the Hansa Treatment. I'm for anything that might work.

Thanks so much for your encouragement Wacko Woman!
Posted 1/3/2011 5:13 PM (GMT 0)
Hello traveler! I appreciate your sense of humor. It's nice to laugh about some of these crazy symptoms. As I told Wacko Woman "I admire your stength".

Thank you also for the suggested reading. I intend to look it up as soon as posisible. I look forward to learning more about what I can do to help myself and to further my understanding.

You mentioned going through a time of severe stress that caused you to get worse. Does stress do that to us "lymies"? I wasn't sure but it does seem to make me worse when I go through stress.

It seemed strange to me that you said three years is a long time to go undiagnosed after you went through 40 years! It's also somewhat encouraging because it makes me feel that it's definately not too late.

Thanks again for making me laugh..............................Wille
Posted 1/3/2011 6:18 PM (GMT 0)
Oh golly gee & shucks Willie - you're making me blush!! blush

My motto is "Blessed are we who can laugh at ourselves - for we will never cease to be amused!!" Actually that was on a card that my Mom sent me!!! smilewinkgrin It just fits me really well!!!

Stress does act as a trigger to bring out tick-borne infection symptoms. This is because while your body is "distracted" with handling stress, tbi's (tick-borne infections) take that opportunity to spread. It is very heavily advised

by quite a few LLMD's that anyone with tbi's not only reduce their stress levels, but to avoid it as much as possible. For me, should I get into very much stress (last time it was a family feud starting) and it put me into a tailspin.

Since LD can go 'chronic" in as little as two weeks - according to Dr. Burrascano's writings- so three years is a long time. I have been fortunate actually - I grew up with most of these symptoms (except testicular pain - giggle!!), so there has been a lot less "shock value" so-to-speak.

Boy, this post got long in a hurry - I must be in a talking mood!!! Poor hubby! smhair

Thank you again for your kind words. Please keep us informed on how you are doing!!!
Posted 1/3/2011 10:00 PM (GMT 0)
Hi Willie, I'm glad you've started treatment but sorry you're feeling worse.

Like the others have said, it's pretty normal to get worse before getting better.

The one thing I wish my LLMD would have said to me in the beginning is "This is going to take a long time to treat, maybe years". I thought I'd be better and back to work after 6 months; I wasn't. It's been more than 2 1/2 years now. I don't know when I was bitten and never had a known rash. After having a QEEG done that shows brain inflammation, several radiologist who read it thought I had 10 to 20 years of chronic inflammation most likely from the tbi's. This inflammation, depending on the areas affected, is what causes the memory problems (which I have also, and get worse with new meds), visual, balance, and all other neurological symptoms. It also messes with your pituitary gland and hypothalamus; which goes on to mess up all your other hormone levels. It's a vicious cycle!!

Muscle cramps are mostly caused by the Lyme infected bodies inability to us the magnesium we have. I am one very dependent most of the time on taking up to 1500 mg of magnesium daily or my legs will be in great pain and can't stand standing! I know when I need magnesium when my calves start cramping (restless legs at night) and my eye lids start twitching. It can also contribute to heart palpitations. These all get worse with die off or "herx" reactions after starting new meds.

And try to use all the kitchen timers you have while cooking to keep safe. I have one on my microwave and stove top that I'm constantly using. I was thinking of getting one of those little wind up ones too, but always forget to put it on my shopping list. Go figure!!

much prayers to you and your family -
Lisa
Posted 1/3/2011 10:47 PM (GMT 0)
I haven't taken any antibiotics in a year. I use an infrared sauna (portable that I bought on e-bay) and take baths in epsom salts and food grade hydrogen peroxide at least three days a week. I also take HH caps and Artemesia along with high doses of niacin (up to 5000 mgs a day). Since October I've been going to a doctor once a week that runs my blood thru ultra violet light, ozone and I also do a hydrogen peroxide and a vitamin B drip. My condition has been improving. I'm not cured yet but I am feeling better. I've also begun taking hydrogen peroxide (food grade) orally (1 tablespoon before bed). When I first started with the baths I herxed something awful. same with the UV & peroxide treatment.
Posted 1/3/2011 11:26 PM (GMT 0)
Hi LupnerRN! You took the words right out of my mouth! I wish my doctor would have told me at the very least that I may need further treatment. I was told I have Lyme over the phone and instructed to p/u my meds. Nothing else. I'm greatful for this forum because with every response I learn something new.

I have an appt. this Thursday and I hope he has something more to say.

Until now, I've been under the delusion that I too can go back to work soon. In fact I've been looking for a job for a while. However, it seems that when my phone rings with an unkown number (as mush as I needed) I secretly hope it's not a job offer. Deep down I know I can't handle one more thing, much less outside employment.

I don't know what I'm going to do. Currently we are living off of my ex husbands alimony and child support but I'm worried about my credit and my outstanding debts and I was hoping to get well soon and get to work so I can catch up and maybe even have a little extra to take my son out once in a while.

It would've been nice for my doctor to have taken the time to explain things a little so that I could plan accordingly.

Thanks for the information about magnesium. It makes so much sense. Thanks also and most importantly for your prayers. I'll do the same for you......Willie
Posted 1/3/2011 11:30 PM (GMT 0)
Sounds like your body needs some Magnesium Citrate, and like Traveler suggested, epsom salt and hydrogen peroxide baths. I believe this could be a big help to you. I had the same symptoms. The magnesium citrate has helped a lot and the detox baths give me tremendous relief. I do them three times weekly.

Are you seeing a LLMD? Is he/she making sure your getting the right supplements and probiotics, etc? So very important to get the proper supplements, probiotics (a must!) and detox as much as possible.

Gary

Post Edited (GWB) : 1/3/2011 5:12:08 PM (GMT-7)

Posted 1/3/2011 11:56 PM (GMT 0)
Hello Gary,

I was just diagnosed a few weeks ago. I went to my general doctor. I don't know if my doctor is an LLMD.
I have an appt. this Thursday morning. After a check-up where he found that my glands were swollen and I told him about my twitches he ran blood work and called me three days later with the results. He told me to p/u my antibiotics (doxycycline) and schedule another appt. after a month. That's it. Nothing else. I was left confused, relieved, (I thought I was losing my mind and I might have to die before any one figured out what was wrong with me) and I thought I'd be cured by now.

Thanks for the advise. I'm going to go out tomorrow to p/u epsom salt and hydrogen peroxide for the bath. I hope I remember. :) It's so frustrating. I can't remember if I took my medicine or not. Thank God tonight my son saw me and told me I had already taken it.

I'm afraid to take anything right now for fear of overdosing or somthing. I'm going to ask my doctor about the probiotics and the magnesium supplements.


Thanks for sharing with me some of the things that have helped you. Even though I've read a million times about the epson salt and peroxide baths I still wasn't convinced (I can be quite hard headed) but now that you've told me how much it helped you I'm looking forward to trying it. Take care Gary.................Willie
Posted 1/4/2011 12:38 AM (GMT 0)
Willie, I strongly urge you to see an LLMD. Your chances of conquering this disease is going to be much better if you see a doctor who specializes in it. Sadly, not many doctors do. In fact, not many doctors believe that Lyme disease is the serious epidemic it's become today.

Did you have a tick bite with a bulls eye rash? Have you had any testing that verifies that you have Lyme disease or any co-infections? A Western Blot test by Igenex would be a good test to have. However, Lyme disease is a usually diagnosed clinically, so any amount of testing you have done does not always confirm whether or not you have this disease. If you were bit by a tick, and had the bulls eye rash, that's the best indication that you have Lyme disease.

GP's are really not qualified to treat this disease. Lyme disease is nothing to play around with. The longer you go without proper treatment the harder it is to overcome. I urge you to find a LLMD and get the best treatment you can from someone who has the knowledge and experience to treat this disease.

There are a couple people here who will send you information to your email on how to find LLMD's in your area. Ask the moderator about this and she will make sure you get the information, however, you will need to put your email address on your profile in order to get this information sent to you because we don't post LLMD's names on the forum for privacy reasons.

I hope and pray things get better for you SOON!

Gary
Posted 1/4/2011 1:03 AM (GMT 0)
jc27 -

I am glad you are finding a treatment that works for you! I wish you continued healing.


Willie -

I am amazed how you take the time to respond to everyone and respond with an encouraging word. Starting a new job right now might be a bit much - as Traveler said stress can make Lymes (any disease really) worse. I know that debt can be stressful also - but try and give yourself some grace as you are in the beginning stages of treatment.

Your Dr. does not sound like one who is very familiar with Lyme's. It is really best to have a Doc that is knowledgeable about chronic Lymes'.

I will be thinking of you on Thursday.

Be Well,
WW
Posted 1/4/2011 1:38 AM (GMT 0)
THANKS GUYS! I HAVE TAKEN YOUR ADVISE AND POSTED A REQUEST FOR HELP IN FINDING AN LLMD IN MY AREA.

I HAVE ALSO POSTED MY EMAIL ADDRESS.

GARY, THERE'S JUST SOMETHING about THE WAY YOU WRITE THAT GETS ME MOTIVATED. I DON'T KNOW WHY BUT IT MAKES ME GET MY HEAD OUT OF THE SAND.

WACKO WOMAN, THANKS AS WELL. YOU GUYS HAVE ENCOURAGED ME FAR BEYOND MY EXPECTATIONS.....WILLIE
Posted 1/4/2011 2:33 PM (GMT 0)
Willie,
A word of advice - no matter what your Doc may say about probiotics - you must take them regularly if you will be using abx. I'm not taking any abx, but have issues with my intestines so I use Kefir (similar tasting to yogurt), although there are many different probiotics out there.

Abx will kill off not only the bad stuff, but the beneficial bacteria in your intestines also. I would also get more than just acidophilus. Some thing with at least bifidophilus also would be much better. Probiotics are a way to stave off even more health issues!
✚ New Topic ✚ Reply