posted
I'm not sure if I will get 100% better with the dose of abx I'm taking right now because of the oral immunosuppressant's I was given within the first 45 days of getting sick. The doc I'm seeing says 500mg twice a day for at the least 4-6 months untill I feel as I did before I had gotten sick and at that point another 4-6 weeks after that. He only did blood the first time I'd seen him (neg). 2nd time no blood, I didn't ask what tests he did the 1st visit other than was he looking for coinfection (he stated YES). LYME-neg COINFECTIONS-neg
From time to time I still feel problems with heart, head, legs, back & most of the listed problems that come along with the lyme, but its nothing like it was. My left arm and neck are getting better, muscles are no where near what they were.
My biggest fear is the immunosuppressant's 6-5-4-3-2-1 that I was given might have put me at the point of no return (crashing after abx) once again..
Is there more I or the Doc I am now seeing should be doing to beat this lyme..
[ 12-11-2011, 08:43 AM: Message edited by: Cracker Jack ]
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
Well theres no point in worrying about the immuno suppressants, cause whats done is done.
I would get an LLMD and I can tell that you don't have one by the things youre saying. An LLMD would never give you a timeline. Some of us are sick 5 months and some 5 years-- with no difference in circumstances. also 500mg of what?? There isnt one pill that fixes everyone, and most people take several different type of meds at the same time.
So basically I would get a new Dr...and learn as much about Lyme as you can.
Posts: 844 | From CA | Registered: Apr 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Cracker Jack,
Here's the thing.
You could have been given everything from totally nothing, to immunosuppressants, to 4 kinds of antibiotics, to 6 gallons of wine and a dozen bananas, and no one can predict if you or any of us will recover, when we will, and to what extent.
There is no known universal cure for Lyme disease. There never has been.
There are no studies showing certain elements (drugs, herbs, whatever) will attack and kill all of the spirochetes and other organisms entrenched in our body. There isn't even a test capable of determining if we've been "cured".
What we are doing is the best we can... which is throwing all we have available at Lyme and tick borne diseases to hopefully gain some ground and work toward finding a cure, or at least get to a point where we have a reduction in symptoms.
We are trying to do it using the absolute best available science and more importantly, clinical experience, and trying to always follow the rules as best we can-first do no harm- but truth is, we don't have a clue and we don't have a cure.
My point is I REALLY REALLY REALLY don't want to see you or anyone worry over what could have/should have been done.
Live for today and enjoy today. What will be, will be.
Don't waste one precious moment living with worry about this crazy situation. I can assure you that worry will not cure Lyme disease. If it could, I'd have been cured years ago, as would have many others.
What I know is we must keep going and keep trying to do what we can to lead as good of a life as we've been given.
Take it from a wise person who once said...
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up."
I believe that wise person was YOU- it's there in your signature.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There is nothing you can do about the past use of immunosupressants, so try not to worry about it. Having that in your history just means to me that you need the best lyme doctor you can possibly afford, because steroid use makes your case more complex (more difficult for the doctor to treat successfully).
Here are some quotes from Burrascano about the antibiotic you are on and the dosage:
"CEPHALOSPORINS must be of advanced generation: first generation drugs are rarely effective and second generation drugs are comparable to amoxicillin and doxycycline both in-vitro and in-vivo. Third generation agents are currently the most effective of the cephalosporins because of their very low MBC's (0.06 for ceftriaxone), and relatively long half-life. Cephalosporins have been shown to be effective in penicillin and tetracycline failures. Cefuroxime axetil (Ceftin), a second generation agent, is also effective against staph and thus is useful in treating atypical erythema migrans that may represent a mixed infection that contains some of the more common skin pathogens in addition to Bb. Because this agent�s G.I. side effects and high cost, it is not often used as first line drug. As with the penicillins, try to achieve high, sustained blood and tissue levels by frequent dosing and/or the use of probenecid. Measure peak and trough blood levels when possible." (page 14)
"*Cefuroxime axetil- Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens.
Adults and pregnancy: 1g q12h and adjust." (page 18)
The second quote tells you that Burrascano says to take 1,000 mg of Ceftin every 12 hours. Adjust the dosage as necessary.
The next to the last sentence of the first quote tells you to keep a sustained high level of this med in your blood. You do that by taking it with probenecid or by more frequent dosing. The last sentence says that you should measure the patient's blood level of ceftin at its peak and at its low. This lets the doctor know if you dose needs to be adjusted (raised), because only high doses are effective.
Also, see the following quote from Burrascano which seems relevant to your case:
"Treatment of chronic Lyme usually requires combinations of antibiotics. There are four reasons for this:. . . " (page 12)
Those on this board have generally found that treatment with only one antibiotic at a time (called monotherapy) does not have a good outcome. I suggest you read the page of Burrascano where he discusses why (page 12). Lyme can easily evade one antibiotic at a time by changing forms. So, the best lyme doctors give the patient two different types of antibiotics to kill lyme in it various forms. Perhaps your doctor will add another antibiotic soon. But, you didn't mention any plan of his to do so.
I didn't get rid of lyme until I went to a doctor who did this. I wasted 2 years with a doctor who had me only on amoxicillin (with probenecid) and never treated me for coinfections.
Virtually every lyme patient has coinfections per Burrascano. So, you should be given some treatment for babesiosis and bartonella and see how you react to it. No lyme doctor should go by negative coinfection results. This is very important. It is quite common for a person to have negative coinfection test results and still have coinfections.
Doctors are to inquire about symptoms of coinfections and the best lyme docs just automatically treat every lyme patient for babs and bart along with the lyme. Doesn't seem like your doc plans to do any of that.
Also, you didn't say what lab did the tests. If it was Quest or LabCorp, their coinfection tests (and lyme tests) are practically useless. Burrascano always recommended Igenex.
Also, every lyme patient needs personal copies of all of the tests that are done on them. So, I suggest you request copies of all of the bloodwork. You need a complete file of your treatment. And, you need to understand the file. So, once you get the blood test results, study them and see what coinfections you were tested for, the name of the lab that did the test, and the actual results reported.
The more you understand about your tests and treatment, the better you will be able to evaluate the doctor's treatment of you. With lyme, this is very important. A patient who just sits back and waits for the magic to happen is often disappointed.
An educated patient will spot poor treatment or inadequate treatment and will know what to ask, what to ask for, and when to move on.
I hate to see people waste time with doctors who don't know enough to cure them. I stick around here to help people not waste time. I wasted 2 years in treatment with an inadequate lyme doctor. That's where I'm coming from.
The doc is the key to getting rid of this disease. The doc is the key. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. I suggest you STUDY Burrascano and then look for a doctor who follows that protocol.
It is a 4-pronged protocol:
antibiotics supplements diet exercise (1 hour of weight lifitng every other day)
Do not ignore any of the 4 prongs. They are all essential. The supplements restore to your body the things the lyme is depleting. The exercise strengthens your immune system which is essential if you are ever to regain your health. That is what my doctor told me, and when I did the weight lifting, I saw the truth of it. The diet is essential so that the high doses of antibiotics and antibiotic combos do not give you a yeast infection in your mouth and intestines. Nasty!
In March, it will be 7 years since I completed my treatment and I am still symptom-free, enjoying my life. I had undiagnosed lyme disease for at least 10 years.
Don't know where you are in pa, but maybe you are not too far from Maryland. We have a few good doctors here who follow Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
Just found a local group here in SE Pa, I made a call to them.. This is way to much for me to just manage alone.
Thank you all for your help. I hope one day to be able to help someone else hurting.
CJ
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you are interested in the Baltimore area lyme doctors who follow Burrascano, send me a private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I have a Pa list that was PM'd to me a while back. The doc I'm seeing now was on that list but with no comments/replys. I'll be making a appt with a LLMD with many good replys from that list. The only reason I went to the doc I'm seeing now from that list was he takes my INS. Now I'm willing to pay cash or whatever to get well. Also theres a local meeting coming up at the end of this month and I will be there.
Thanks.
CJ
PS you can send that PM (you just never know)
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
PM sent.
I suggest when you call other docs to make appointments, you ask if the doc follows the Burrascano protocol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
Finally got a appt to see a LLMD. 2 months seems like a long wait.
But none the less I'm a happy camper just being on some good LLMD's list..
Thank you all for your help.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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