When I first got my IgeneX lab results back, showing I was positive for Lyme Disease, my doctor at the time gave me a prescription for doxycycline for three months at 400 m.g. per day, divided into two doses at 200 m.g. each.
I took the doxy for six weeks, then, the day after Thanksgiving, I developed terrible gall bladder pain, so I stopped the doxycycline to see if that helped the gall bladder pain, and I then felt better.
I got a gall bladder ultra-sound diagnostic test, to see if something was wrong with my gall bladder, but I don't have the results back yet.
A few days ago, I started getting constant muscle twitching in almost every muscle group in my whole body.
I am not on any antibiotic now, so I don't understand why I am getting the muscle twitching.
My husband has Lyme Disease too, and he has also been taking the same dose of doxycycline, also for six weeks.
He stopped his doxycycline, in order to prepare for taking his new antibiotic, penicillin, which his new doctor said he felt would work a lot better.
Today, my husband, too, started to get muscle twitching in his quadracept muscle, which is similar to how mine had started.
I am so scared, and confused, and I wonder how typical this is with other people who have been on our medicine, at our dosage, for our period of time.
I am wondering when this will go away, and what I can do about it?
I take a lot of supplements. I take potassium, CoQ10, magnesium, and also about one hundred other supplements, but none of them is helping this muscle twitching.
Please help--my husband and I are both TERRIFIED and so so confused!!!
Thanks-- Zeitgeist
Posts: 44 | From Indianapolis | Registered: Sep 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
How long were you untreated after infection? 6 weeks is not considered to be the gold standard for Lyme treatment, even if caught the day of infection. Does your Doctor know that you ceased your medication? Do they have an alternative for you? Are they willing to change up your doseage to make it easier on your gall bladder, etc?
Lyme invades the muscular tissues, nervous system, etc. very quickly - in some studies of mice it was found in the brain 48 hours after infection. It's not something to treat lightly. One of the most common symptoms with Lyme is muscle spasms and twitches. If there is any relation to the Doxy it is because you stopped taking it, or you had taken it just long enough to cause a Jarisch-Herxheimer reaction.
I don't know how much you know about all this yet, but I am happy to try and answer any questions you have, and there are many others here that are very helpful. I would reconsider your Lyme treatment, and hopefully you can discuss your treatment openly with your current Doctor to see if he or she can be flexible with your medication and doseage.
If they are unwilling to consider alternatives, you may need to find a Doctor who is a bit more up to speed on its treatment and can help you understand what to expect both during treatment and just the disease itself. As far as I have learned, Penicillin is not considered a strong or all that effective treatment (comparatively)- it is usually used for children because they cannot take the stronger antibios.
I can understand your antibiotic concerns, especially when it comes to your gall bladder. There are supplements and herbs that you can take which can assist your body in removing toxins (Lyme creates toxins during its lifecycle and also when it dies) and help process the medicines out of your body more effectively. There is also a drug (the name of which I forget at the moment) that is made to assist the gall bladder specifically - many of those on IV antibiotic treatment take this to save their gall bladders.
Doxy is one of many antibios that are available for treating Lyme, so perhaps another class of antibios is in order for you, or even a lower dose starting off - you may have too ingrained an infection and need to start out slowly like many others. If you have a strong infection it can cause much bigger Herxheimer reactions.
Thank you for your concern for me and for my husband. We are so new at this, and so overwhelmed, and everything we read confuses us even more.
We went to a support group at a hospital, for those with Lyme Disease who live all throughout Indiana, and nobody there seemed to know as much as my husband and me, and we only just found out the definition of Lyme Disease two months ago.
Two months ago, my husband and I were watching a t.v. show, and a girl on the show, who was just out of high school, was suffering from sumptoms her mother said were symptoms of Lyme Disease. Her mother said she had tested positive on a Lyme Disease blood test.
After the show, I kept thinking about how this girl reminded me of myself in high school. I started high school in 1983, but had my first experiences of leg and feet pain in 1982.
I did a little research on the internet, and I felt like I related to the symptoms I was learning about.
I heard there was a brand new book out, written by a doctor who had Lyme Disease himself, named Ken Singleton, and that the book was called "The Lyme Disease Solution."
I bought the book, and read it, and decided to order the test-kit from IgeneX, like Ken Singleton had suggested.
I asked my brand new doctor of osteopathy, who I had just met, and who had been treating me for whiplash and neck pain and stiffness after a car accident a year and a half ago, where I had been rearended, if he would sign his name for me to do this IgeneX Western Blot Lyme Disease test.
The doctor knew nothing about Lyme Disease, but willingly signed off on the papers.
When I got the test back, and when I talked with the CEO of IgeneX about the meaning of the results, he said my results showed that I have had Lyme Disease for a year at least, and that's all the test can show.
When I think about it, I can see Lyme Disease symptoms going back as far as 1973, when I was five.
I had a weird rash in 1980, which the doctor could not explain.
Joint pains didn't start until Spring 1982.
I got a terrible headache, and had to drop out of college, after camping in the catskill mountains in upstate New York in 1982.
Doctors said nothing was wrong with me physically, and that my headache was caused by "bipolar disorder," and they said I would have to take lithium for the rest of my life.
The doctors were not listening or respectful of me, so I stopped trusting them. I stopped the lithium after one year, because I didn't think I had the symptoms of bipolar disorder, especially when I met other people who had bipolar disorder.
In 1999, I had a strange painful cystic boil on my leg, with the color purple on the skin next to it.
The doctor didn't diagnose it, only drained it and gave me two weeks of antibiotics--septra or maybe cipro.
Shortly thereafter, I developed extremely painful nerve and tendon pain in both feet, across the top, and the achillees.
I thought I had "compression neuropathy" from an accident involving an inversion table to hang from your feet, to elongate your back, hanging upside-down. The feet padding on the unit had hardened over time, and my body weight was hanging by my feet.
The doctors diagnosed me with an accident injury occuring from doing the inversion table.
I thought it would heal after a few months--but the pain continued for years and years.
This made me research alternative therapies and nutrients.
That led me to a functional medicine doctor who tested me for vitamin/mineral/amino acid statis, gave me supplements, then re-tested me.
This helped a little--but not enough.
I took over 100 supplements for a year.
After the whiplash injury, she prescribed hyperbaric chamber sessions in a soft-sided hyperbarid chamber 4 hours per week, for a year, to heal the whiplash injury to the soft tissues.
My neck felt better and better with the hyperbaric, with chiropractic, and with supplements.
Three months ago, my husband bought me a new bike.
After my first bike ride, the next day, I felt horrible shooting pain in the bottom of my right foot.
I thought I broke my foot riding the bike.
But I read it was a Lyme Disease symptom--so I haven't x-rayed it yet, but I have a prescription for an x-ray.
There are no doctors in Indiana who treat Lyme Disease, and they all also say that there is no Lyme Disease in Indiana.
I couldn't get in to see anyone till three weeks ago in Wisconsin. Doctor M. He is a LLMD.
My husband couldn't get in to see anyone till yesturday in Pennsylvania. Doctor J. He is a LLMD.
After my appointment with Doctor M, he said he couldn't treat me, until he saw some results of some tests. Now also, there are ultrasound results from a gall bladder ultrasound, a kidney ultrasound, and a uterous ultrasound.
I am supposed to talk to him on the phone tomorrow, but I only have fifteen minutes to ask all my questions--and I have hours and hours worth of questions---how are we supposed to discuss everything in only fifteen minutes???!!!
He had said he wanted to start me on two new antibiotics, together, and also diflucan, every day, for a month.
But I don't want my organs to be damaged!!
I am so scared, and so confused, with no friend support and no family support, and my husband has no friend support and no family support.
All the doctors in Indianapolis just say: "I know nothing about Lyme Disease...you'll have to get yourself a specialist somewhere else."
Our drives to our doctors had to be done by us ourselves, and we had to drive over eight hours to get to our doctors. It took everything out of us, and that was when we only had just started treatment.
We are supposed to return every couple of months.
We are terrified, and we need all of your prayers.
I don't know what is going on, or how to get any other support...
Any advice would be so greatly appreciated!
Thanks, Zeitgeist
Posts: 44 | From Indianapolis | Registered: Sep 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi Zeitgeist,
I'm posting a quick note to let you know I have not forgotten to respond, I am just not doing so well the last 2 days. I am composing my reply offline as I can and will get back to you as soon as possible.
This is one reason I hardly ever post here, as I can't depend on feeling well enough for any stretch of time. But then I have improved greatly because I used to never even be able to read posts much less consider replying. Take care.
Hopefully others will come along and have some advice as well. You are not alone!
posted
zeitgeist: Your problems with your feet sound very much like a toxic action of cipro. See these two non commercial sites where it is explained in depth: www.fluoroquinolones.org www.fqresearch.org probably both sites will help you a lot to trace back many of your problems.
And your current problems with doxyciclyne seem to be another toxic reaction. That antibiotic is a very toxic one, although some times it is worth the risk to take it. In fact it is one of the very few that is not recommended by the international organizations to use in children.
Unless you both are allergic to penicillin, it is a much safer antibiotic, although your doctor should check its effectivity against the illness.
Sometimes we harm a lot ourselves in the process of seeking for a pharmacological cure. In other cases, people are so fortunate that it seems they get cured with no important side effects.
Posts: 94 | From canada | Registered: Nov 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
The same thing happened to me with the doxy. I was fine on it, twitching started going nuts when I quit. I have been told it's because I have bartonella, and the doxy suppressed it without curing it/me. Thus the twitching began in earnest. Just my .02.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Bless your hearts!!!! It is scary when you find out that y'all have something like this, but become a little confused as there is soooo much info. out there!!!
Nenet is really giving you some good advice!
Unfortunitally you suspecting and discovering that you have Lyme by doing your own research is probably how 80% of us were diagnosed!! Good for you for persuing it!! By the way, you made a good choice in the book you have.
As Nenet has given you and it looks like will give you more good advice, I can maybe just share my experience with you.
I was infected 18yrs. ago and I started having the twitching about 5-6yrs. later. (I was not diagnosed until about 2 1/2 yrs. ago) I almost hate to say this but I want to be honest; although it would calm down at times, it continully got worse. I now have muscle twitching, full blown muscle spasms and siezures.
Please keep in mind that I was misdiagnosed for many years, put on steroids for mis-diagnosed auto-immunne diseases which makes lyme worse.
I am finally seeing a wonderful LLMD. Mine is so severe that he wanted to make sure they were controlled before started IV. I take Lyrica 25mg. a.m. and 150mg. p.m. (for nerve pain and paired with the following works well for seizures and spasms) Lamictal 25 mg. a.m., 75mg. p.m.. This is the first thing that has worked pretty well for me.
Some feel that Lyrica is a questionalbe drug, but I have to say that my feet and others areas that burning so badly are 10x better. So for me, it's well worth it!
These two drugs my LLMD said they work well in conjuction for spasms, partial siezures and full blown seizures.
My son's experpience is exactly like yours! He was born with it but not dx until Jan. 08. What y'all share is that he never exprienced the twitching until after stopping the Doxy. He is know on Zithromax, Plaqinuil and Mepron.
However there was a several month break between antibiotics due to his severe 'brain herxing'. His mood swings and depression go much worse.
It's only my opinion, but I think, well I know that when you start antibiotics after having it for some time, you stir up the bacteria/wake it up more----ie: herx reaction.
If you stop them without completely being rid of it, your syptoms can and usally do get worse.
You need to share the fact the your worried, don't understand this disease and all of your concerns with this LLMD. He/she should and needs to listen and help y'all through this!
You will always have support on this site; I'm glad you are using it!
Take care, read all you can and post as many questions and concerns on here as you want! We have all the time in the world for you and it's free too!!!!
posted
Nasty muscle twitches, especially in my calf muscles, were one of my first LD symptoms.
Also had burning skin & floaters in my eyes. My LLMD says its neuro LD. He calls it a "not atypical form of atypical lyme."
After almost 3 years of abx, the muscle twitches & burning skin are much better--but not 100% gone--so treatment continues.
Sounds like you stopped the doxy much too soon. Once the LD gets into your neurological system, it takes some time to knock it out. Won't happen in a matter of weeks.
Good Luck.
Posts: 213 | From ohio | Registered: Jul 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
hi zeitgeist - are you still around lately? I am new to this posting thing since I only recently have had the energy or mental wherewithal to read AND write here haha. I totally forgot where it was I had replied to you, so it took me a while to find your thread.
I am having a little trouble remembering all that you might have asked in your last post, so I will try to keep my reply simple.
Please don't be afraid for your organs - you have complete control over what goes into your body.
Next, you have a LLMD, and you can come to an arrangement qwhere you can get a local doctor to work with your LLMD to order urine tests each month to check on your kidneys, gall bladder etc.
Second...wait, third! You have several different options available to you for treatment. Not only several different antibio choices and doses and modes of taking, but also:
You didn't mention whether you are doing anything to manage toxins in your system - this may be one of the most important factors to getting well. I don't think I would be improving well at all if not for the herbs that we make a tea from that I drink twice a day - they really do help bind the Lyme toxins and help remove them.
Also you need to be taking a very good probiotic, like Theralac, to keep your good flora alive.
My simplest advice to you is to not stress out about your treatment - there are many opportunities for getting better, and many people here and elsewhere that are very happy to share what they know. The fact you have found an LLMD and gotten a diagnosis is HUGE. You are wellon your way to getting better!
Please let us know how you both are doing and if you have more questions. Take care and happy holidays!
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