posted
Hi All I have not posted in quite some time. Not that I have been feeling well, but sometimes you just need a bit of a break from reading all the lyme disease problems. Anyway, I had lyme in 1994 and was treated rather quickly after the first few symptoms arose. I had only two weeks of iv Rocephin which I believe ws the norm back then. Then around 1999 I started to feel achey, lethargic, palps,and I went to a lyme specialist who diagnosed me with lyme after my spinal tap came out positive for it. I then had 4 weeks of IV Rocephin of which made me feel great. I had another spinal a week before the last treatment week and it was negative. Once I reached 4 weeks that was it - no more abx for me since the spinal was negative. Well right after that it was downhill. I have been quite frustrated for 5 years. I did proceed to find another doctor who is great and gave me some oral abx but Ihav not seen him in over a year (not very close to me and quite a trek to get to). I am now going to make an appointment because I feel lousy. I have the same horrible feelings as the second time: lethargic, achey, woozy etc. I have had all tests concerning the tinnitus: MRI, MRA, MRV (for the arteries and veins in the head) and an ultrasound of the neck arteris and veins which was fine. My general bloodwork is fine. Also I just found out I have some nodules on my thyroid. Can lyme cause this? Do you think I need further treatement? My dr. does use the more advanced labs in testing (not quest) so I am confident I will get a positive diagnosis. What are the best labs nowadays? any advise will be appreciated thanks
Posts: 11 | From Douglaston, ny | Registered: Mar 2005
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lyme_suz
Unregistered
posted
Hi,
We used to live near Douglaston.
Sorry you are going thru all this.
My understanding is that repeated relapse indicates treatment is incomplete.
You need to get to real lyme dr. There is an excellant on Long Island you can get info over on Seeking a dr.
Western Blot is best lab test, most reliable but the longer you have had lyme, the harder to get postive. (Unfair, right?) You can learn about tests on Newbie links. Check into co-infections.
But in my opinion, Lyme Literate MD is crucial as so many can only get diagnosed clinically and you need someone who knows what they are doing.
Waitlists for the good drs. Consider finding a dr. to give you good dose antibiotics while waiting to get in.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Even after over three years of abx, I, fully believe that I will be sick again...been in a remission since over a year now.
For one thing, I believe that we really have no way of actually knowing if we have gotten it all or not. So, live as if it's gone, but, expect it to raise it's awful head at any given moment. (it, being the spirochete bacteria) \
The above is just my opinion and not to be taken as fact...
posted
Hi, Mispy, Sorry to here the bad news. As you've no doubt noticed from reading this board, lyme-etc. is particularly nasty, and relapse is common. So they just dropped you in the ice water after the 4 weeks of ceftriaxone? Didn't you have metronidazole or tinidazole to break up the cysts, along with another antibiotic to finish them off? And what about co-infections? Was your doc really lyme-savvy? Believe me, I know how much of a drag it is to be sick despite all those antibiotics. Read Dr. B's treatment guidelines. And Dr. Z's notes on chinese herbal treatment of tickborne diseases. These guidelines were key in helping guide my long fight against lyme etc. But "don't take anything as 'gospel'". as they say. Fight the nasties on every level, even down to organic food and good water. "Everything counts in large amounts". I have confidence in Bowen labs. They seemed into the science and not just the slick "pr". But the best "lab" is your body. Your symptoms are like a stain that turns green with lyme disease, that's indeed turned green. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am one of those people who kept relapsing, because I was never adequately treated. Maybe it's impossible to get rid of all the little buggers, maybe not, but you really must be symptom free before you stop the antibiotics.
I think Igenex is a great lab. They finally "found" my LD, long after other labs couldn't.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Thought I'd come back and post the address of Dr Zhang's pages But they're gone..I should have archived them, I guess.... Here is a fairly informatiinal reference to them, though. The original pages are gone, probably due to misguide personal, or corporate (inherintly misguided) greed.
DaveS
Always fight for ease of information flow! The BENEFITS far, far outweigh the, uh, ...'risks'... ...!!!
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
My husband and I have been relapsing, despite aggressive tx for Bb, for almost 20 years.
It appears the culprits were babesia and bartonella, undiagnosed and untreated until the last year. We seem to still have Bb, so I don't know if the coinfections somehow inhibit Bb tx, or give Bb a place to hide, or what.
I'm trememndously much better now. I, too, will never assume I'm cured. But I think I'll be able to be well and to control what remaining infections I do have.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
It is also possible one is getting re-bitten. A friend of mine who kept "relapsing" has stopped relapsing after they moved out of their house essentially onto "concrete". She hasn't taken abx in a year. Of course that is a short time I guess and theoretically she could relapse later.
Posts: 2276 | From united states | Registered: Jun 2004
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