so heres the deal, bit in the end of june 05 started doxy on July 5, 05....3 weeks....... felt great, it was over......wrong..wrong... so i relapsed or whatever you want to call it, insufficent treatment more likely.
became very ill, had the bullseye, all symptoms in the book and then some, got pretty bad pretty quick.
went back on doxy for 5 months, then amoxy for a month, then ceftin for a couple of weeks, then tetracycline for 3 months.and recently a month of fluconazole.
so here i am, almost a year later, much better when compared to last year for sure, i was seeing a local llmd named Dr. K here by the shoreline and then went to see Dr. P in wilton based on a reference from my friends at lymenet.
my remaining symptoms are burning eyes, red and hot cheek, (mostly left side) and migrating back pain and wrist pain and neck pain, comes and goes.all of these symptoms are very fly by night except for the face thing.
I experience this almost daily for hours, or more very strange.My temp last year was always really low, or 99.5 for months, now it is like 97.9 in the mornings and 98.3-98.6 the rest of the day.
i have managed to work out a few days a week, i have energy again and i think i am ready to go back to work, all good right..................
So here is my thing, those who know me here, know that i have been trying to move back to colorado for quite some time, i stayed for my gram and she passed a couple of months ago, i am ready to reclaim my life again and stop being this dredfull disease 24-7.
Dr.P called yesterday, and wants a follow up, dont get me wrong he is truly a talented person, but i am paying out of pocket and i just dont know what to do, i have been off abx, for almost 6 weeks and on the fluconazole for a month no new symptoms, no relapse, just the same lingering crap.
what to do know, any ideas, he said the ball is in my court, but i dont feel confortable with that, he said that of course he shoots for symptom free for at least two months but he also wants me to listen to my inner voice as what to do, this is strange since i pay 10 dollars a minute to him for his opinions. `
so here is the ultimate question, for the people who are really bad off still, or who have made progress and for all of you that have been playing the game of lyme a lot longer than me.
If i stop everything now and see what happens, what should i expect, is it a night mare waiting to happen, do i need to step back up to the abx highway or what. I caught this really early, i saw the tick, the bullseye and have been sick for under a year.I know this is a minority group here on the site but any ideas?
When is enough, .......enough, is there such a thing as no symptoms for two months....is there a possiblilty that you get to a point of treatment where you are as good as it gets or what.......
thanks for reading my novel of a topic, and i hope to get some good advice from you good people, i know your not doctors, but you all have lyme and i trust you folks opinions almost more than a lot of the dr.s in my life.
THanks.....DJ
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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Just my opinion, but I noticed 2 things from reading your essay.
1) Don't see any treatment for coinfections -- don't know if you have them or not.
2) Again, this is totally my personal opinion and NOT medical advice -- try some herbs -- specifically Artemesinin for Babs and
Andrographis for Lyme -- if you have a reaction you will know you need additional treatment whether it be antibiotics or herbs.
At this point I would be trying things that have never been tried before -- I do believe that these bugs become adept at avoiding antibiotics -- especially ones which have the same mechanism of action.
Or you could try Colloidal Silver.
If you only have Lyme, from what I have read it could be months or even years before your major symptoms come back. Stress seems to be a major trigger.
I know that if hubby ever gets to this point in recovery we will probably continue with herbal treatment for a minimum of 6 months or even indefinitely at a reduced dose.
Good luck and I am really glad that you are making such rapid progress towards a full recovery.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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well, i guess i did forget to mention the co infections.
i tested negative twice for all of them and lyme test lit up, so i guess i was lucky here, and after all this time, i do know that the testing is far from accurate. So i know that negative doesnt mean anything.
i could try going down this road next, i suppose or i could try herbs. I do have some doubt in the fact that i only have lyme and by the many things i have read here, people seem to think that it is really uncommon for someone to just have lyme and no co infects. Is this true? thanks dj
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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BostonLyme2005
Unregistered
posted
Hi DJ,
Treat for co-infects! Ask your LLMD to treat you for co-infects, that may the what is bothering you.....
Also, If you can, try another month of Tetracycline....If you herx like crazy, then there you go......Still have Lyme!
If I were you, I would continue with the abx, and I would try the Tetra to see what happens....
It made me feel like crap, but I did manage to get 11-12 good days also, over 6 months....
If you STOP now, you are making a HUGE mistake!!
It does not matter what anyone believes, what is fact, is what you want and need!
DONT STOP THE ABX!
Ask yourself this ?..........
Do you want to go through this torture all over again????????????????
Also, are you going to have a great LLMD in CO.?
If not, you should stay right where you are.
Maybe have the co-infects tests done again.
There is no such thing as you are lucky, with this disease!
Get the meds today, you will be happy you did!
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I would say you are not free of Lyme and still need to be on Antibiotics. The herbs will definitely help. I have been on Antibiotics for over 4 years. I wasn't diagnosed early like you were. My daugher was diagnosed early, treated for three weeks like you were. She got pregnant about 5 months after and her baby was born with atrophy of the optic nerves. He is quite visually impaired. He was to the doctor almost every month of his little life for some infection. I called it his monthly sick check. I began to suspect he had Lyme after about a two years. About 2 years later he began having what sounded like petit mal seizures. That scared her enough to decide to have him tested. He had Lyme. She was then retested and was infected. She has been very sick and had to quit her very good job due to her inability to drive. Her story is very long. Don't stop treatment until doc says you are ok. Ann
-------------------- Ann Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
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I agree with everything the others have said so far. Your burning eye thing could be lyme but it could also be low Bart. I am currently on cipro for bart and after my 2nd does it went straight into my left eye and it started to burn. sure it could be lyme too. Babs is also so hard to test with blood tests. You might want to think about a zith run with some Art and see what occurs. Zith is pretty darn good at getting at the lyme so that should not get any upper hand on you.
Posts: 582 | From milwaukee wi | Registered: May 2005
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