Haven't posted in a few months, and wanted to update you on my situation, as well as pose these questions to the entire board...
I have been on abx for about 3 months now [1000 mg of Biaxin, and 300 mg of Doryx], but haven't noticed much of a difference. I still have intermittent blurry vision [been to an opthomologist, who stated there is nothing there], muscle twitches [prominent], dizziness [not Vertigo, but a feeling of imbalance], and sore throat. My second neuro [balance disorder specialist], stated that I have an inner ear imbalance, and recommended physical therapy to regain control of my balance function.
So, the bottom line, is that I'm still not certain of what it is causing these problems. I just read the thread on co-infections, and noticed I have several of the symptoms of Bart. I have never been tested for co-infections, since I immediately started the abx, and did not want to "skew" the results. I have a couple of questions for you...
1) Should the abx prescribed for Lyme, also take care of Bart, if I were to have it?
2) If I want to get tested for the co-infections, do I need to be off of abx before being tested? If yes, how long?
3) Are the blood tests for co-infections any more reliable than those for Lyme?
P.S. I am diligently searching for a good LLMD to take over care for me, but haven't locked down that "ideal" doc yet.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
Good questions. I'll throw in my two pennies...
1) my research on bartonella says the tetracyclines should get it but on the forum I often see Levaquin and other abx prescribed along with Doxy to kill bartonella
so I think the answer is probably not, you need something else to kill bart (and definitely other co infections)
2) not sure if you need to be off abx for co-infection testing - I just had a bartonella test and I did go off abx for 2 weeks before testing (also because I asked for another western blot for Lyme). I would ask your doctor.
3) I hear the blooed tests are just as dicey and often a clinical diagnosis is necessary for some co-infections. I also hear Frye Lab in Arizona is the "igenex" for co-infection testing.
Personally I wasn't up for shelling out money out of pocket for Frye testing so I went with my standard lab covered by insurance. Waiting for the results...
I, too, am questioning bartonella...
Nice to see you on the board again.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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Just thought I'd share that I got a positive test for Bartonella and I was taking Doxycycline at the time. I had the Fry test for Bartonella done.
I don't know whether it is advisable to be off antibiotics for these tests or not. I also have all of the symptoms you mention, as well as all but one of the symptoms on the bartonella questionnaire that I posted on this forum. I also have Lyme and Babesia.
I haven't started Bart treatment yet. My doc is trying to establish a good antibiotic baseline for the Lyme and then he says he'll go after the Bart. Since my body is weak from so many years of not being treated we're trying to be systematic, when possible.
The doc mentioned Rifampin and it's given in combination with other antibiotics. He also mentioned that there is a newer antibiotic (and perhaps better?) for Bart, but I'm afraid I didn't ask him what it was! I guess its actions are similar to the Rifampin though.
From what I've read here and in books and articles, the tests for co-infections can be problematic. People will get false negatives. Also, the tests for co-infections do not test for all strains of Bart or Babs. That doesn't mean that the tests are not worth doing though.
It's my understanding from the Lyme specialists I've seen, that the diagnosis for co-infections is ultimately a clinical diagnosis, just as it is in Lyme. That is, people can have these co-infections and still test negative on testing.
Hope this helps and I hope you feel better.
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
So far you've got good info.
I might just add that I would think that if you have Bart-like symptoms & the Doxy is not helping with them, you may have the Bartonella-Like Organism that Dr.B speaks of.
That one is treated with Levaquin.
How's your body temp been running? AM/mid-afternoon/PM? If you haven't noticed a pattern you may want to check it for a while.
I'll try to bump up treepatrol's post for you, there's a link to Dr.B's video on the "BLO". he also talks about it in his guidelines posted on www.ilads.org, (page 23).
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If you have a sore throat, I'd get tested for viruses. EBV often presents with sore throat, swollen and painful lymph nodes.
See thread on "Viral Testing" here at lymenet.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thanks guys. I appreciate all the info. I've discovered however, that I cannot handle Levaquin. I took this particular abx for a UTI, back before this whole Lyme possibility came about. Needless to say, I had some really bad side effects. Are there any alternatives to the Quinolone family?
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son took 600 mg of rifampin daily with 200 mg of doxy (except not weekends)
On weekends he added zith to the rifampin.
He did this for 8/9 months.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I believe Dr.B lists the alternatives on p23 of the guidelines. I printed the guidelines out, dog-eared the page & brought it to my LLMD. You might want to consider that. Whatever strain of whatever organism it is, it usually turns up negative (I believe).
I wouldn't rule out Babesia either.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
my hubby has bart in head..has been on Levaquin for three mts..with zith this last mt..he has head and eye pain for 6 yrs...on other meds for 13 mts all together...so far no change.. he is in such head pain...no bad sids with the Levaquin so far...should he stay on it...how long has any one been on it??.we go to Dr. next week...just wondering if he should stay the course with it..thanks for andy sugestions...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
I have been on antibiotics for 6 months doxy and omnicef. My symptoms were terrible for the first 8 weeks. I have never felt 100% but I have felt much better.
Flaring right now and feel terrible again. In theory, if the toxins are what make you feel terrible you may be feeling bad because the meds are doing a good job killing the infection.
I had untreated symptoms for 3 years and my LLMD says 9-12 months on meds are normal before you feel better and are ready to try a "challenge" with different meds to see if you have really eliminated the disease.
Patience might be the answer here. Just a thought. Best of luck. I know even one extra day of living the the symptoms is awful.
Posts: 23 | From East Coast | Registered: Feb 2008
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posted
Thanks all. I truly do appreciate the info. I can't make sense of all this, being that I don't appear to be as sick as many claim to be on this site. I was on 200 mg. of Doryx for Acne, when I removed the tick. So, I was already on a regimen of abx at the time, although granted, it wasn't the megadoses I'm taking now.
It's frustrating to think I'm doing all I can, and it still might be enough. If it is this disease that I have, I just pray to the good Lord above, that it doesn't take my eyesight or hearing. So far, I'm free of any muscle weakness, pain, etc.
My major issues concern intermittent blurriness, imbalance issues, muscle twitches, tinnitus, and chronic sore throat. The problem, is that many of these things can also be brought on by other things. I have been to two neuros, an ENT, an Allergist, and a GP [although the GP didn't see me strictly for my symptoms]. All have given me a clean bill of health. I have been proactive, and opted for treatment, even though my test results weren't definitive. I didn't even think about Lyme, until other possibilities were exhausted [about 4 months post-tick]. But, at that time, I did start my present regimen. So while it wasn't as early as I'd like, I'm hoping my being on it at the time, might at least have helped if it is Lyme.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
I believe that my imbalance and sore throat were due to babesia. They have both gone away since treatment with mepron/zith or malarone/bactrim
Posts: 45 | From MA | Registered: Sep 2007
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posted
jmo- May I ask approx how long u had your sore throat? My dd has this symptom as well, it's very painful.
She did test positive for Strep, but she's been on meds for that and still is not clearing up. How long did it take you to see improvement on the Babs tx? Thx for any info SG
Posts: 269 | From VA | Registered: Jun 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I will agree with all the other posters.
Quoting from memory here,me bad, but think there is like 9 KNOWN strains of bart,,,and I believe the test checks for 2.
PLUS whatever amount of strains that are unknown!!!Unknowns are ALWAYS the point of contention!!
So tests are good,,unless they are worthless!!Sorta like a coin flip.
IF your having def. bart sx, and or stretch mark streaks tell tale tattle tales,,,then testing is almost a waste of money,,,
the BEST test is if strong abx for bart,,,like the levaquin or rifamphin/zith combo,,,working their magic.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
skigal- For me it took about 9 months and about 5 doctor's to figure out that I had babs (It looks like lyme now as well)... I constantly felt horrible but the long list of symptoms would come and go (I guess that's the norm). The sore throat always made the list and at the beginning doctor's thought it was mono. I think it took a good 3 or 4 months of treatment for it (sore throat) to go away... I still have some symptoms that just won't go away. I have been on abx for 7 months, it's been a lot of ups and downs... I'll feel good for a month or 2 and then not so good. I remember going to the doctor's a few times because my throat was so sore I thought for sure it was strep.
Posts: 45 | From MA | Registered: Sep 2007
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