posted
My background: Completely healthy before bitten by a tick on may 2000. From July 2000 to July 2001 I took doxy 200mgs twice a day every day. From July 2001 to Jully 2002: I took biaxin xl 1000mgs once a day and plaquenil 200mgs twice a day every day. July 2002 to Feb 2003: Biaxinxl 1000mgs a day + plaquenil 200mgs twice a day + mepron 750 mgs twice a day every day!!! March 2004 to sep 2004 The same as above but adding flagyl (500mgs a.m and p.m) 2 days every week.During this period because of frequent urinary tract infections I had to replace biaxin for bactrim ds for 20 days , levaquin 14 days and cipro 10 days etc...depending on the UTI infection.
My current treatment after 3 weeks off abx is : Mepron & ketek every day.And flagyl 2 days every week. Diflucan only on yeast episodes. The thing is that 10 months a go floaters started to appear for the very first time and dizzy spells+vertigo are the same as always. My LLMD took me out from plaquenil more than 3 months ago to see what happen. The ugliest symptom 4 years ago was my lyme arthritis wich I don't have anymore (arthritis disappeared more than a year ago. So the symptoms that still persisting these days besides the floaters and vertigos include foggy brain and sometimes a slight numbness on my left cheek. This last symptom used to be worse and horrible before starting with the mepron. My initial bloodwork on 2000 igenex showed + for ehrlichia and babs. But babs was untreated for the first 2 years of treatment (My first Dr. wasn't LLMD at all) On year 2003 Nov (a year a go) every thing came 0 negative: for ehrlichia,mycoplasma, bartonella .I never developed antibodies for lyme. But althought babs was on the negative range (it showed 0.66.)my LLMD asked me to keep with the treatment. My candida albicans test came negative 3 months a go. Am'I cured even thought I have the symptoms that I have mentioned to you above? Could this be a lyme remainder or as my LLMD says :I should wait till I'm 100% symptom's free to get off abx.
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I dont think anyone can make that determination for you besides you and your LLMD.
Still having symptoms though, with positive tests,w ould tell me you still have active infection.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
The crime of Lyme: Yes , I agree with you nly me and my LLMD can take that determination...just wondering what other people think... About the tests..all of them are negative even babs is on the negative range but not with "00" (plain zero) as the other infections. Thanks for writing!!!! :-) I appreciate it! Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Virginia,
I really don't know either, but wanted to respond anyway. I am not that far down the line and experienced enough to even guess.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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have your immunological levels checked IgG and IgG subclasses. you may have an underlying immune condition from the lyme.
another test to run would be a CD3 circulating immune complex which will tell you if you are actively fighting an invader, if you have ruled out autoimmune (lupus, etc by ANA and RA panel).
you can either see an immunologist or have your LLMD or PCP run these, if they are up to the task. you may be a candidate for IVIG (gammaglobulin)
posted
I had 2 months ago everything checked! Well the basic blood test: Hepatic /liver panel,metabolic panel,t3,t4 etc . Everything came perfect. I had 1 month ago 2 ct scan one pelvis and the other abdominal everything was fine too. I even asked to my LLMD about going to an innmunologist and he said it is not woth it. I don't know but I have the feeling that maybe I have bartonella. Althought my test came back negative last year for this co-infection. I suspect bartonella because every time Ihave to take abx for my Urinary tract infections I experienced like herx reactions from bactrim and cipro wich Ithink are abx used for bart.
Confused,virginia
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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posted
why does your llmd defer your request to see an immunologist? what is the reasoning behind that?
that is absurd IMO. he should be collobarting with the possibility of ideas not discluding because of his personal opinoin.
the work of an expert immunologist can be outstanding, i would really really look into this.
as for bart to you have any positives for bart? you could do a month of levaquin or rifampin and see how that goes. definitely worth the shot before stopping abx alltogether.
posted
Hi I'd tend to believe your LLMD that you are not 'cured' or in remission until you are symptom free.
What does your CD 57 test say?...most LLMD's use this to detemine when the immune system is strong enough to tackle the infection itself.
I do not believe we can fully get rid of this bug (most Lymies at the York conference tested positive under microscopy even those who were in remission after aggressive treatment and including some asymptomatics).
Perhaps the best we can hope for is a reduced germ load that the immune system can handle or the Borrelia pushed into in a dormant form by treatment.
Just my thoughts on this, BW Emma
Posts: 37 | From Whitehead, Northern Ireland | Registered: Feb 2009
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posted
I agree with others to stay the course. Clinical symptoms have been more accurate than tests, at least, diagnostically. According to ILADS guidelines, no test can accurately determine the presence or absence of borrelia.
And to judge by what you report, you seem to still have neurological symptoms, e.g. foggy brain. The cheek pain may also be from nerve or neurological involvement.
It's great that you were caught early. The multiple infections may have made your case more difficult to treat, meaning, longer term therapy. And I hear that ketek is a good treatment. Haven't tried it myself.
While I had no co-infections, I will be wary the rest of my life. I'll consider myself cured when I go off antibiotics(if ever) and have no symptoms for the rest of my life!
[This message has been edited by Poochini (edited 26 December 2004).]
Posts: 548 | From Diagnosed 2003 | Registered: Jan 2003
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posted
By the way, when you say you have floaters and periods of dizziness and vertigo, how long do those periods last?
I had visual effects--spots of colors, dimming and brightening vision, flashes, as well as double vision, extreme vertigo in which it seemed the room was spinning.
It turned out I was having seizures. A clue was that the episodes never lasted more than two minutes, and afterward I usually felt very tired. After a nap, I was fine.
Posts: 548 | From Diagnosed 2003 | Registered: Jan 2003
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posted
Well, I agree about giving a try to the bartonella treatment before getting out of abx,even thought my one time bart test was negative. I agree too, that I still have persistent ,but in low intensity , neuro-symptoms thats why I'm still on abx even thought my husband thinks it is in mind!!! About the vertigo episodes they appear close to my period and last seconds ,ususally when I'm hungry or after eating. About my cd57 I haven't ask for it and my LLMD have never suggested this test. I'm so glad and happy that you guys take the time to write down your opinions.
Virginia!!!!
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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posted
Sorry ,I forgot to mention that when I take cipro or bactrim ds for my UTI's I feel muscle weakness wich is a symptom that I have never felt since I got bitten . Is like my muscles(legs and arms) are heavy or numb...I dont know how to describe it. Am I herxing from this abx for my UTI? If yes.....then could it be bart since these abx are used specifically to treat it??? OHHH man I'm thinking seriously about bart..maybe after 3 more months on ketek/mepron and flagyl I'll give it a shot!!
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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go after the bart now an then clean up with ketek and flagyl.
you may want to add amoxicillan or cefitn to the ketek/flagyl since it has extracellular activity whrereas ketek is intacellular and flagyl is getting the cyst form.
as the flagyl opens up the cyst the beta lactam abx (peniciilin, cephalasporin) kills them because they are bactericidal abx (inhibits growth of new spirochetes).
posted
ZIPZIP As I told you My combo is : ketek/mepron and add flagyl (500mgs am/pm) 2 days every week. Lets see what happen when my UTI appears... But your reasoning about co-infections first and then clean up with ketek and mepron I agree with you, but isn't the mepron for babs which is another co-infection. My question then would be: What is the right order to treat the co-infections in order for the treatment to be sucessful I know Dr B have written about this before and his opinion (before bartonella appeared as a TBI co-infection) was to treat babs first and then the rest of the co-infections. For now regarding my case I think after years with mepron I should try to get rid of bart if any on my body...just in case.. Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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posted
I wanted to tell all of you that in my original message for this post inline number 6 there is a mistake. I wrot� "July 2002 to feb 2003" . Instead of 2003 is 2004 so the line 6 should be: July 2002 to feb 2004.
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Virginia,
I don't know either, but I would stay with it.
You said, "My question then would be: What is the right order to treat the co-infections in order for the treatment to be sucessful."
Babesia as far as I know. It can be difficult to get rid of babesia, some people have to re-treat.
I hope you will be feeling better soon, hang in there, Beverly
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nly me and my LLMD can take that determination...just wondering what other people think...
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