posted
I have a positive Igenex IGM result, Neg IGG even though I have been sick for 11 years. I have taken a couple of months of abx last year w/out herx or feeling better..I hate to bomb myself w/abx especially since I have lots of diarrhea/gut issues if I dont have lyme to begin with. It is hard to know what to do..Just wondered if anyone w/a positive result feels they don't have lyme>>? Thanks
Posts: 146 | From Midwest | Registered: Feb 2005
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I go back and forth all day long with those thoughts. Some days I believe it then the next I'm fearing that this isn't really "it". I've decided instead of obsessing about what "it" is etc I'm concentrating on getting myself healthy (ie eating right, exercising etc).
I've learned quickly that Dr's aren't going to help me save me, I need to start learning to save myself.
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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tailz
Unregistered
posted
Very few of us here only have Lyme.
There are so many strains of Lyme and coinfections, and the tests stink at detecting them.
My guess is that you have some sort of coinfection. I show only one band right now for Lyme (last year I had 4), but I'm sicker than ever right now.
So either I have some other version of Lyme that doesn't respond to the abx I'm on right now, or I have a coinfection.
I actually stopped my abx because I think I have bart and babs. Why kill off all my good bacteria for nothing? - I need my coinfections treated first.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I know I have Lyme. I felt bad the first couple months on abx ... no clear herxes because I just felt bad all the time. I had a tiny bit of relief when I started the meds for a couple weeks, but nothing significant ... I had always had fluctuations in how I felt.
I also have babs, so take meds for that.
I also have a bad bacteria overgrowth and no good bacteria in my intestine. I've been being treated for that for three days now and it's the first time I haven't had stomach pain and diarrhea for years.
I also am toxic for lead and mercury. My LLMD's PA said that I'm very low in heavy metals for a Lyme patient, but still they are treating it.
I do not have a candida problem, but am taking Nystatin and have made dietary changes to prevent it.
I take mega-probiotics to both prevent candida and to rebuild the good bacteria that I am deficient in.
A good LLMD will look at your health overall. Lyme is not simple. It disrupts your whole body. Just starting on abx and not building your immune system and addressing other issues will not get you better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I use to go back and forth with this in my mind a lot -but I know I have it, the antibiotics proved that to me with horrible herxes.
My sister also has LD and has had no herx, but is feeling better, a lot. But she gives more credit to the thyroid pill she was put on at the same time.
The antibiotics you were on for 2 months, first is not very long, but you should have herxed (although remember not everyone does). Secondly, your LLMD should have tried different abx. There are so many strains of LD and then the co-infections and endless combo's of antibiotics. One might make you herx badly another might not. Azithro nearly killed me with herxes, Amoxi was much milder.
As far as GI issues, were you on good strong probiotics? Very important.
I am not a big fan of this test, but it can be helpful, has your LLMD run a CD57?? If your results are low, you can assume your LD results are accurate, if the results are normal-high range then co-infections need to be considered.
posted
Having been on abx for 8 years I can say with a fair amount of experience that it takes a long time to turn this bug around.
I believe it was Dr. B in NY that said 18 mo before you will really say you can tell you are getting better. My neuro improved first (memory) and then physical things too.
Keep in mind that tests for Babs only tests for 3 strains of the 10 or so strains in existence so it is easily missed and should be considered possible by clinical dx.
It is extremely true that you must support the immune system. Much like a cancer cell, this bacteria can take the protein from your body, cloak itself in it making it difficult for your immune system to recognize and attack. It is a crazy, crazy disease that goes ANYWHERE in you body and requires abx for treatment. If you don't support the immune system w/supplements, your body won't either.
With gut problems you're a candidate for HPylori which has alot of false negatives and should be treated by sx. If you can handle it, long term abx usually will eventually work.
Good luck! Curley
Posts: 982 | From Florida | Registered: Feb 2002
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butchieboo
Unregistered
posted
Hey Suz...a positive IGM means you have an "active" infection....plain and simple....
If you choose not to treat it....that's your decision....but sick for eleven years....
quote:Originally posted by butchieboo: Hey Suz...a positive IGM means you have an "active" infection....plain and simple....
Read this all the way through, including replies. Western Blot explanation: http://tinyurl.com/ffn3x
and yes, try meds for bartonella!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by valymemom: I have read that GI issues are bartonella related.
Probably true, but also get tested for bacteria/parasites in the gut. I have a couple bad bacterias that are overgrown and causing my gut symptoms. Candida can also cause gut issues.
Now that it's getting treated, I'm feeling better in that regard ... except the Cipro seems to be causing a Lyme herx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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This is a question i ask myself every sick day of my life. Dont feel guilty for asking yourself. I juggle with wondering which of the following is my problem..or maybe it is a combination of a few of them...or maybe it just that my nervous system is out of whack.
I have many symptoms.
Candida (doctors say i dont have it but i would beg to differ). i took a stool test showing elevated yeast and disbiosis.
Adrenal fatigue...I dont have addisons or cushings so docs dont wanna hear about it. Again, i show all the signs
CFS ...a doctor diagnosed me with it and fibro. Of course, cfs CAN be caused by lyme, etc...but i also do feel that CFS is an illness of its own, often NOT caused by lyme.
MS....my doc believes i have this (although negative mri)
Lyme...doctors willingly tested me 3 times, on 3 different occassions all negative. ONLY my Igenex test was positive.LLMD says i probably have it although i have no tic exposure, no rash, neg so far for any coinfections, cd57 of 80 (lower end but in normal range).
Im very sick. I tried taking Zith...and about 1.5 months after my liver tests was abnormal and i had to stop! That was horrible. Feel free to write me...this might be a good time to have someone to talk to about what route to take...thoughts, etc.
Good Luck
Posts: 12 | From Los Angeles | Registered: Jun 2007
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posted
Thanks everyone for your replies so far. I really appreciate it. It is all so overwhelming, even after doing so much research, it is still confusing. I think I will have a CD57 test done to see where I am there, maybe that will lead me as well.
Posts: 146 | From Midwest | Registered: Feb 2005
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