I know I have lyme. I have nearly every sx on most check list.
All my lyme test have come back negative, with the excetpion of 41KND.
Iam going to beg my doctor to give me a trial of antibiotics just to see if I feel better.
Since he is not a LLMD which antibiotic would be best to try??
I think he will be open to this as he thinks I have something, so far we have ruled out MS, Lupus, rheum. arthritis......
Thanks in advance for any suggestions
Posted by Tincup (Member # 5829) on :
Hey cat...
Sorry you are having such a difficult time with diagnosing Lyme... or whatever it may be that ails you. It must be very frustrating and disruptive to not even know what is making you feel so bad.
To answer your question... since you can't possibly share your entire history and medical records... and we have no idea if you have Lyme and/or coinfections or not...
I'm afraid it would be impossible to name one antibiotic to try in this circumstance. It would be an uneducated guess at best.. and you deserve better.
May I suggest printing out a copy of Dr. Burrascano's guidelines for yourself and for your current doctor? From them, you can try to determine what might be good in your specific situation.
You might also want to read through Tree's post for new members. which is stuck on a post near the top of the medical section where we are right now.
I also hope you will take time to explore this site below.. which I feel is interesting and might give you a road to travel with your doctors approval.. since your specific diagnosis is not forthcoming at this time.
These results might pick up on complicating factors.. and again they may not.
But if any are experiencing problems in those areas and you can pinpoint the problems now... they can be addressed sooner rather than later.. and hopefully make your situation more transparent.. and get you feeling better ASAP.
If you have questions, there are a lot of wonderful folks here who would be glad to help. Just say the word.
Take care of you!
Posted by bernieb4 (Member # 14654) on :
cat65, If you have at least 75% of the symptoms of Lyme and live in an area where Lyme is prominent or if you remember being bitten, I wouldn't waste your money on the expensive Igenex Lyme tests. They aren't that accurate, even though they're far better than the standard Lyme blood tests. If you've gotten tested for anything else matching your symptoms and have ruled them out, and your dr. is willing to, I'd ask him to start you on some abx.
Look at Dr. Burrascano's 2005 guidelines -they're excellent. He outlines symptoms, abx treatment, etc.
Don't wait for a positive Lyme blood test, so long as you have ruled EVERYTHING else out.
Posted by sixgoofykids (Member # 11141) on :
First, I would find an LLMD to get properly diagnosed. I see you live in NY .... I traveled from Ohio to NY for treatment and took my daughter all the way up there to see whether she had Lyme. It's worth the money.
That being said, if you ruled everything else out, doxycyline (300-400 mg per day) seems to be a common abx to start with.
Without your symptoms and an LLMD to analyze them, the best abx cannot be determined. Plus doxy won't treat most coinfections. But you can see how you react to it for a month or two to help you decide whether to see an LLMD for proper treatment.
(This, of course, is not medical advice)
Maybe giving your doctor a copy of the Dr. B guidelines would help. It would be nice to "create" another LLMD!
Posted by webmeg (Member # 13647) on :
I agree with SixGoofyKids, ask for 300mg of Doxy/day for 6 weeks and see how you do. Keep a journal and note any improvements/worsening while on abx. You'll need longer than that if it's Lyme, but it's a start.
I take 100mg of Doxy 3 times a day which is pretty easy to tolerate.
Remember, you might feel worse before you feel better.
~webmeg Posted by Lymen (Member # 6882) on :
Or ask for 4 g (1 g every 6 hours) of Amoxicillian.
If you have Lyme you will herx after approximately 3 days. You won't miss it.
Herx is an exacerbation of your symptoms.
Posted by map1131 (Member # 2022) on :
I would start with Dr B's site and read everything he has written about including vitamins and supplementation. Consider all areas he covers.
I hope it's just one abx and you knock it out of your life. That would be the perfect world for you or anyone else in this lyme & company world. But I would guess you need to consider more than anyone particular abx.
I wish it was A+B+C=D for all?
Pam
Posted by adamm (Member # 11910) on :
You won't necessarily herx. I've been in treatment for four months
and haven't herxed yet.
Posted by Lymen (Member # 6882) on :
Most likely he will Herx. Exceptions are rare.
Posted by trish4 (Member # 14156) on :
Yeah Adam is right. I just started 6 grams of amoxicillin and havent herxed. Ive never had a herx reaction in my 4 months of treatment. Only a gradual worsening of cognitive symptoms.
Posted by sixgoofykids (Member # 11141) on :
My daughter had an equivocal lyme test, so we started a trial run of abx. We weren't only watching for herxing, but any changes as some have an improvement but never herx.
Sometimes some meds cause herxing and others don't, some people herx, others don't, we're all different.
Posted by TerryK (Member # 8552) on :
It is proven that some people are seronegative but still have lyme disease. The only way you can know for sure if you have lyme disease is to be evaluated by a doctor who knows what they are doing because it is a clinical diagnosis and not based solely on test results. Also many LLMD's use an antibiotic challenge which can often convert a negative to a positive test result.
Go to the seeking doctors section of this website and find an LLMD. You will be saving yourself a lot of time. In addition, it's possible to have what is commonly considered a co-infection without having lyme. Symptoms often overlap. Best to get to someone who can figure those things out for you.
Terry
Posted by sparkle7 (Member # 10397) on :
My ELISSA test & Western Blot were negative as far as NY state standards.
There are alternatives to abx... I herxed alot from an herbal supplement called Cumanda. You can order it from Nutramedix. That may be a way to see if you have Lyme if you don't want to go to a doctor who specializes in Lyme right off. You start off by taking 1 drop, twice a day - 30 minutes before eating. Every day you ramp it up until you are taking 30 drops, twice a day. Not everyone herxes - just like abx but it is a way to see how you respond without using drugs.
If you do chose to use abx - it's best to go to a doctor who really knows about Lyme. It doesn't sound like your current doctor is very well versed in the subject. The sooner after infection that you treat Lyme - the better.
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