posted
If labs indicate NO Co-infections found, would it be safe to say Non Exist?? Or are these tests just as shady as Lyme elisa and WB??
Daughter has Positive IGG & IGM 41 but all co's are Neg....Lately she has been having headaches at night sensitive to light and noise, increased anxiety and Nauseous... this SCREAMS CO-Ifection to me!!
she's 11 and being treated with ceftin 500mgs for the past 2 weeks under my llmd.
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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posted
Aww I am sorry about your daughter. It breaks my heart when i hear about little ones dealing with this. I am 28 and I hate the fact that I am dealing with this at such a "young" age.
I was wondering about your exact question.
Looking forward to answers
How long has she been ill before getting diagnosed?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Not ill very long....just maybe 6 months with vague symptoms that an 11 yr old shouldn't be feeling.
Blood test revealed positive IGG 41 after her dr reluctantly told me this news....said not to worry, it doens't mean anything!!
I ran to my LLMD because I know that's why she's not feeling well, so we are into 2 weeks of treatment and her symptoms are increasing...which is a good sign of herxing.... just can't tell my pediatrician because he doesn't beleive in any of this...tells me the tests are ACCURATE!
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Costly and unreliable, IMO it's better just to treat.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
What are you daughters symptoms?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Jenn, the coinfection tests are just as unreliable as the lyme tests.
To get around this, my lyme doc ordered a number of tests for each coinfection.
So, for example, my IgG and IgM for babesiosis microti were negative, but my FISH for babs was positive. So, that meant I definitely had babs. It was seen in my red blood cells through a high powered microscope.
These are all Igenex tests I am talking about.
So, if lyme treatment doesn't get her well, then start treating the coinfections.
In my experience over about 8 years, it is the rare person who has lyme and does NOT have both babesiosis and bartonella.
Do some babs treatment and you will know right away. If you have it, you will have a reaction to treatment.
Some quotes from Burrascano:
"PIROPLASMOSIS (Babesiosis) GENERAL INFORMATION It had been thought that Babesia microti is the only significant piroplasm affecting humans. Now it is believed that many of the over two dozen known species of piroplasms can be carried by ticks and potentially be transmitted to the human. Unfortunately, we have no widely available tests for these non-microti species. That is why, again, a clinical diagnosis is required." (page 22)
"DIAGNOSTIC TESTS Diagnostic tests are insensitive and problematic. There are at least thirteen, and possibly as many as two dozen Babesia forms found in ticks, yet we can currently only test for B. microti and WA-1 with our serologic and nuclear tests. Standard blood smears reportedly are reliable for only the first two weeks of infection, thus are not useful for diagnosing later infections and milder ones including carrier states where the germ load is too low to be detected. Therefore, multiple diagnostic test methods are available and each have their own benefits and limitations and often several tests must be done. Be prepared to treat based on clinical presentation, even with negative tests." (page 23)
Bartonella
"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore.
Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment." (page 24)
Posts: 9931 | From Maryland | Registered: Dec 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
My tests were negative but I am 99% sure I have both babs and bart, and I tested pos for ehrlicia. My symptoms point to babs/bart/lyme and the myco/C. Pneumonie I tested pos for.
I'm sorry your daughter is going through this, I'm scared everyday my kids will get sick and I never want them to have to experience this. I guess the only good thing about us (parents) getting it first is that we know what to look for and get out children treated quicker than most.
posted
My daughter's initial co-infetion panel came back negative. She has such severe symptoms that she can't even go to school or hang out with her friends. She is basically bed-bound.
After 2 months of treatment we went to a new Dr and she wanted to do another co-infection panel. Sure enough, this time she came back positive for erlichea. The darkfield test showed that she had severe bio-film and bart.
She still hasn't tested pos. for babesia, but has been clinicaly diagnosed and we are treating.
Only a handful of strains have been identified and from what I have learned there are many more strains that one can be infected with and still not test positive.
She has been infected for 10+ years and just recently diagnosed. My thought on it, even as un-scientific as it is, is that all of the different infections have many years to hide, change and morph into who knows what to evade detection and erradication.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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