posted
I have been sick for six months with an array of symptoms and have been to several doctors with no diagnosis. Today I saw a LLMD and he gave me a prescription for amoxicillin...
Im kind of worried to start a medicine with no definitive diagnosis, but I understand the complications with that and Lyme.
I have never been on any sort of ABX so I dont really know what to expect. I have been extremely sensitive to the Anti depressants other doctors have tried to put me on.
Doctor has prescribed 500mg of Amoxicillin 3 times a day for 1 week... Then 2 tabs 3 times a day for the week after that along with a drug called probenial (I think trying to read the Dr's writing) 2 times a day.
Is there anything I should watch out for? Could this hurt me? I hate medications and have never had to take them in my life so this is all new to me.
Doctor told me he is looking for a reaction either feeling better or worse in about 5 days. How worse can it get am I going to have to tell my work? Ive already missed so many days... Can you work through a herx? Is there a percentage of people who have a herx reaction to those who just get better?
Thanks sorry for all the questions.
Good luck and get well soon!
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
It sounds like your doctor is trying to confirm his clinical diagnosis by your response to medication. That's what they do when the symptoms point to Lyme but the tests are negative. Tests can confirm Lyme, but they cannot say you don't have it.
Probenecid is the second med. It helps the amoxy stay in your system longer.
I took way more than that, so I believe that even if you don't have Lyme, you'll most likely be safe on that dosage. I took 2500 3 X daily.
Some people get really sick during a herx. I was too sick to work whether herxing or not, so it depends how well you're doing prior to meds how hard it will hit you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Yeah, thats what he said the second medicine does... Will it hurt me in any way? Will it make other things stay in my body longer or just the ABX?
Yeah, Im pretty much out of it at work I try to just count down the hours till the days finished and I only work 3 days a week.
He told me the herx if I have one will prob last around 2-3 days so Im trying to plan starting the meds were those 2-3 days will fall on the days i dont have to work.
Any other pointers...
Posts: 286 | From St. Louis | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would also take something to prevent yeast while you are on the antibiotic. Avoid sugar helps. And
many eat yogurt to help protect the bowels. If you get really sick, you can drink electrolyte drink
mixes to give the body some of what is needed as you lose cell in the killing of the borrelia.
If you are going to be on longer you should use stronger prevention.
-------------------- 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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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Well....have you been tested for other pathogens such as HHV-6, EBV, enteroviruses, Cpn? They can all give the same symptoms as lyme...
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sutherngrl
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Member # 16270
posted
Lyme Disease is a "clinical" diagnosis.
Your LLMD may test you later to confirm that diagnosis. Sometimes after you treat for a few months, positive bands will show up.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
timaca.. Had high EBV to start but upon last test isnt high anymore.. I have this pressure in my face which my LLMD basically said is Bells Palsy... i have no facial weakness just this bubbly, tight sensation that runs along certain pathways on my face.
Can you have bells palsy with no facial weakness?
How long will the herx reaction last if I am positive for lyme? My doctor told me it will begin after about a week of taking the abx then last 2-3 days and it will be most of the symptoms I had when I started getting sick.
If this is the case then I could just plan out to start taking my abx's tuesday that way the herx should happen on days I dont have to work. Looking for opinions. Sorry I have to keep working... My work has been so generous and has basically let me come in three days a week.
Once again is there anything I should watch out for while on the meds?
Thanks for all your replys... This is all so confusing to me I dont know how you all lived with this so long. Im confused even more cause now my other doctors want to run my 6th CT scan of my chest and abdomen... I dont get it. They tell me its not lyme but they cant tell me what it is..
The Infectious disease doctor I was seeing was sure it was lyme till the test came back neg... She even ran a Babesia and Eurichela (sorry for the spelling).
Has anyone else never had a positive test and got better after the ABX? This whole thing is very scary to me that no one can give me an exact answer of what is going on... I mean why do these people make so much money all they ever tell me is whats not wrong with me?
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
The length of a herx and how bad it may be is somewhat fickle. I don't think any doctor can say when it'll occur, or for how long, or how bad it may be.
Doxy causes me a herx, for instance. It usually starts within a couple of days, and lasts about 2 weeks or so. I can still function, just not so well -- extremely tired, muscle pains, neurological issues, etc. For some people a herx will be much worse than this.
And for others, they may never herx. Or just feel a little flu-ish for a day or two.
And maybe ask your doctors for MRI scans, instead of CT? No radiation from MRIs, while CTs will radiate you.
Posts: 584 | From NY | Registered: Feb 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Ahodge01,
I had a tick and a bull's eye and symptoms starting 3 days later, so there is no doubt in my mind I have lyme.
But no doctor (I saw 8 docs in 9 months) believed me because I tested negative for lyme and coinfections 3 times.
Then I found my LLMD who gave me a clinical diagnosis of Lyme and Bartonella. He said Bartonella and Babesia often go hand-in-hand, so he's treating me for all three. He said it won't hurt to treat for something if I don't have it (like Babs) but if I do have it and am not treated for it, I won't get better.
I've been in treatment since Jan. 24 and he started me on Amoxy too. Then 4 weeks later he put me on 2 other abx. I'd say 5 weeks into treatment, I began improving and now I'm at least 1/2 way to normal. So now I know I was right, for why else would I be feeling better on these abx?
Those first 5 weeks, I felt much like I had before treatment started - Yuck! Each time after taking meds (breakfast and dinner), I felt worse for about 3 hours. But it was all the same kind of stuff.
To help, I drank a large glass of water with the juice from 1/2 a lemon squeezed into it. I did that once or twice a day. And I faithfully rubbed my body with a towel (dry rub) before getting in the shower. I always felt a little better after a long shower.
I had a hard time trusting in the beginning too, but please try. Do everything he tells you to do and try to relax. It's worth it!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
And then there are those that simply cannot
function at all and exhibit nausea,vomiting,jerks,
etc. etc. there is no way to know if and when and
how long...Sorry but that is the nature of the beast.
-------------------- 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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Thank you that was exactly what I was looking for... I believe I am going to talk to my infectious disease dr tuesday when I see her.
Im going to tell her I got a prescription for amoxy to treat lyme based on a clinical diagnosis. Unless she has any probable reason to not do it then I am going to see how it works. I will do the CT Scan but this is the last one.
I can only hope I am one of the lucky ones who dont herx bad... Also, my llmd ran another test I guess he sent it to Igenex from the research I have done on him so maybe that will come back positive.
I would love to ask my dr for MRI but I dont know what they are looking for... The only things that fit my symptoms I have found are lyme and sarcoidois... I have had a lot of CTs of my chest and abdomen and nothing has ever came up in the sarcoidois area.
Thank you all, feel better soon and have a wonderful Easter.
Posts: 286 | From St. Louis | Registered: Dec 2009
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