posted
So my wife and I take the kids out Ice Skating and this disease is in my system is kicking my butt. I am supposed to go back to the doctor Monday afternoon. My wife does not seem to understand that "MUSCLE TWITCHING,WEAKNESS,SHAKING LEGS FROM WEAKNESS AFTER A FULL DAY OF WORK, OVERALL WEAKNESS, ACHING KNEES LIKE ARTHRITIS,I HAD A HAT ON TODAY AND FEEL LIKE MY NECK MUSCLES ARE DANCING DOWN MY SPINE OR SOMETHING. " I USED TO RUN CIRCLES AROUND EVERYONE" I feel like Im loosing this battle and I have not yet been clinically diagnosed with lyme. They did the ELISA TEST AND CAME BACK NEGATIVE. I have not lost any weight, muscle tone maybe a little mostly from not working out, RIDING MOTOCROSS, I am too young to feel like this. I am in Oklahoma and no Doc's here that do LLMD. So now I have to travel a long distance. I have taken 1 month of doxy 500mg twice a day. Now I feel like my center of feet are trying to cramp. The weakness overall is so depressing to me some days. WHAT WOULD YOU DO IF YOU WERE ME? Oh yea.. .My scalp was even twitching, muscle aches, muscle soreness and small movement with hands are not as precise. ANYBODY GIVE ME SOME FEEDBACK IM BEGGING
Posts: 29 | From Oklahoma | Registered: Nov 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am so sorry you are dealing with this. I have had many of these symptoms and I experience the weakness and fatigue that makes me depressed and unable to function.
It sounds like you know that it does not matter that the ELISA test is negative, that this test has about a 40-45% accuracy rate, and that the lyme tests are not meant to diagnose. These tests prevent many people from getting well because doctors accept the results as factual, which is horrendous.
You definately have not lost this battle, I do not know how long you have not felt well but please don't give up already...even though you cannot see an LLMD in your area, you can begin treatment by staying on the doxy if you can get your doc to prescribe more of it...
It is quite likely that the doxy is doing its job since you feel so horrible - this is the die-off of the bacteria which makes you sick, tired, and achy...among many other things.
Since you asked what would we do if we were you, I would respond that I would continue on the doxy (I would bring information to my doc explaining WHY I needed to continue it) and I would start on some supplements until I could get to an LLMD.
I would take Olive Leaf Extract, Fish Oil and Probiotics. I would learn as much as I could about this disease, and I would try to find a local support group.
What you are experiencing is horrible but unfortunately it is very common. It DOES get better, but it takes time and perseverance. You will find many people on this forum who will be able to help you with their own experiences. I highly recommend finding an LLMD and scheduling an appt -have you been able to locate one that you could at least travel to? Julie
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Going by weight....
About 400 mg per day would be the "normal" dose of doxy for a 200 pound person. You are taking 1,000 mg a day.
You may weigh 500 pounds, I don't know, but it does seem to be a high dose.
I LOVE Julies post above. Good work. My brain is on vacation and she replied with some very kind words and much information.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you read and study the Dr. Burrascano lyme disease treatment guidelines if you have not already done so. This document will give you your education on lyme disease and its coinfections and how they must be treated. I consider it the most important thing a person with lyme disease can read. It is here:
It also tells you about various supplements you can take for the various symptoms. Hope it helps you.
I found a doctor who follows these guidelines, and that is how I got rid of this horrible disease. Suggest you do the same. Ask if the doc follows Burrascano when you call to make an appt. If he doesn't, I suggest you call another doc.
Burrascano is the lyme guru in the U.S. and in the world. His are the only lyme treatment guidelines found on the ILADS (International Lyme and Associated Diseases Society) website. That says a lot.
Our families often do not understand or comprehend a disease that can affect us like lyme disease. So, come here to vent as often as necessary.
Also, a Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Perhaps if you have your wife watch this short video, she will understand that the negative lyme test means nothing. It may also help her understand your suffering a little more.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WildCondor
Unregistered
posted
That is a good dose actually. Usually it is more like 600-800...how does your stomach handle that much Doxy though! Ouch! ELISA means nothing.
I would travel to see a good LLMD. It's well worth it than mucking around down there where there anre no good LLMDs.
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Welcome to Lymenet! I'm sorry you're going through all this. There are a lot of people here who have been through it too and understand.
It is really not possible, nor responsible, for us to evaluate you. You need to go to a Dr. Many of us went to multiple Drs sometimes over years, and only came to lyme after EVERYTHING else was ruled out.
Why do you believe you have lyme? I mean, you may very well have lyme, but you could have other things too. What points you specifically to lyme?
Obviously the best thing you can do can is get to a LLMD for proper diagnosis. Very often ticks carry more than one disease so your symptoms may be from a combination of them.
Until then you should educate yourself on lyme and how the medical world sees it. Please read Cure Unknown: Inside the Lyme Epidemic by Pam Weintraub and watch the documentary Under Our Skin (Netflix has it) with your wife. And, as TF suggests, read the Burrascano guidelines.
The ELISA test is worthless. If your Dr is really interested in testing you get a test kit from Igenex Labs. They are the gold standard for lyme tests. (http://igenex.com) They will send you a kit and have your Dr draw the blood. The test may need interpreting since it isn't always clear cut. Even then, a negative test doesn't mean you don't have lyme.
So, if it were ME, and I had similar symptoms, and suspected lyme, I would do all that I mentioned. And that is exactly what I did.
Good luck, and let us know how you're doing.
James
Posts: 872 | From New York City | Registered: Jun 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
The others have given excellent advice.
I just stopped taking doxy and I was on 100mg twice a day. I weigh approximately 150 pounds. Please check your dosage.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would still travel to see a LLMD. You sound like
you could have low thyroid problems that go along with
a lot of Lyme patients. Many MD's do not check
that. Have you thought about disablilty?
I will tell you what my LLMD told me. Hire a
lawyer. Hang in there.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Be SURE to make that appointment with the LLMD in the nearby state! Your life and your lifestyle depends upon it!!
Here is the lyme disease and coinfection symptoms list. Check off the symptoms you have. You could be dealing with more than one disease. Doxy will not cover it all.
posted
my dr had me on 50 mg of doxy a day and said it would still make a difference..this was while being on heavy duty steroids,...the strongest steroid out there...decadron..and it was all downhill from there.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Steroids are a no no in lyme.
Our immune systems are already off and they just
compound it. The 50mg doxy may be a good start dose
but you need a lot more to actually hit it. Most
also take something to prevent yeast and biofilm.
So it is plain you need a LLMD to get you well.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
are you in eastern Oklahoma or southern ok.??
Southern you are closest to a LLMD from Texas,,,
drive as far as necessary to get to ONE however.
lots of people have to go much farther!!
I live a few states above you,,isnt the midwest grand??
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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i was as weak as you with all the twitching, etc...9 months into treatment i ran a 5K...you are not losing the battle. i agree with TF...follow Dr. B's guidelines...this disease is counterintuitive....makes you feel like you can't do stuff. You have to fight it and not sit down....check out my video on youtube under bald 5k lyme....maybe it will give you some hope.
i am still battling and some of my weakness has come back but i am still running 2 miles every other day and could barely walk at the beginning of my treatment.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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