Aa
What to believe?
My ID Doc called this morning. I had e mailed my nurse about how I still think i have Lyme or Barts even though they do not think so. He said I don't have Lyme, He said I already treated you for Lyme.
(He tested me with a WB and it was negative in April? but i asked for doxy anyway and did that for the month of june..)
.that Igenx is not a trust worthy lab and they are in the pocket of these so called llmd's. the FDA , something about the pCR bla bla bla.. i was just waking up and he was talking fast.. he is going to continue pain meds, my bone pain and joint is very very bad, so that is good news .. but what i want is an answer..to be off drugs.
I asked about Bartonella and the bone pain. He said yes it is possible but he was trying to tell me not to waste my money on the igenx tests.
Well i went this morning and had the blood draw and sent to igenx. and am going to try to forget about it until the results come in in a few weeks.
interesting note. when i was at the pharmacy there was a flier about tick removal.
At the top it says
U.S. Army Center for health promotion and preventive medicine
at the bottom
Entomological Sciences program aberdeen proving groun Maryland october 2003
"pathogens require the tick to be attached for several hours...
in the spring, a diferent pharmacy had a flyer and it said the tick had to be on for at least 36 hrs...
my husband had Lyme last year and the tick was on for only about 4 or 5 hrs.
all this misinformation
on the igenx lab slip under Bartonella it mentioned the disease
Bacillary Angiomatosis
I looked it up...i have HIV BTW

"The largest series of BA cases involving bone was reported by Baron et al,(60) but others also have reported osteolytic lesions.Osseous BA was documented by biopsy or culture for several of these lesions, but the majority were believed to be BA because of concomitant presence of cutaneous BA lesions and the dramatic response to antimicrobial therapy. Bone lesions are usually extremely painful and most frequently involve the long bones, especially the tibia, fibula, and radius. Other lytic lesions presumed to be due to BA occurred in a rib, vertebrae, calcaneum, and skull. A soft-tissue mass with or without an erythematous, cellulitic plaque in the dermis may overlie the osseous lesions . Radiographs usually show well-circumscribed osteolysis, sometimes with periostitis.
Technetium-99m methylene diphosphonate bone scans are always positive at the site of the lytic lesion. Osseous lesions may occur singly or at multiple sites and may precede development of cutaneous disease. Although lytic bone lesions in several HIV-infected patients have been attributed to KS, there are few diseases of HIV-infected patients that cause osteolysis, and thus BA must be a primary consideration in the differential diagnosis of any lytic bone lesion."
(He tested me with a WB and it was negative in April? but i asked for doxy anyway and did that for the month of june..)
.that Igenx is not a trust worthy lab and they are in the pocket of these so called llmd's. the FDA , something about the pCR bla bla bla.. i was just waking up and he was talking fast.. he is going to continue pain meds, my bone pain and joint is very very bad, so that is good news .. but what i want is an answer..to be off drugs.
I asked about Bartonella and the bone pain. He said yes it is possible but he was trying to tell me not to waste my money on the igenx tests.
Well i went this morning and had the blood draw and sent to igenx. and am going to try to forget about it until the results come in in a few weeks.
interesting note. when i was at the pharmacy there was a flier about tick removal.
At the top it says
U.S. Army Center for health promotion and preventive medicine
at the bottom
Entomological Sciences program aberdeen proving groun Maryland october 2003
"pathogens require the tick to be attached for several hours...
in the spring, a diferent pharmacy had a flyer and it said the tick had to be on for at least 36 hrs...
my husband had Lyme last year and the tick was on for only about 4 or 5 hrs.
all this misinformation
on the igenx lab slip under Bartonella it mentioned the disease
Bacillary Angiomatosis
I looked it up...i have HIV BTW

"The largest series of BA cases involving bone was reported by Baron et al,(60) but others also have reported osteolytic lesions.Osseous BA was documented by biopsy or culture for several of these lesions, but the majority were believed to be BA because of concomitant presence of cutaneous BA lesions and the dramatic response to antimicrobial therapy. Bone lesions are usually extremely painful and most frequently involve the long bones, especially the tibia, fibula, and radius. Other lytic lesions presumed to be due to BA occurred in a rib, vertebrae, calcaneum, and skull. A soft-tissue mass with or without an erythematous, cellulitic plaque in the dermis may overlie the osseous lesions . Radiographs usually show well-circumscribed osteolysis, sometimes with periostitis.
Technetium-99m methylene diphosphonate bone scans are always positive at the site of the lytic lesion. Osseous lesions may occur singly or at multiple sites and may precede development of cutaneous disease. Although lytic bone lesions in several HIV-infected patients have been attributed to KS, there are few diseases of HIV-infected patients that cause osteolysis, and thus BA must be a primary consideration in the differential diagnosis of any lytic bone lesion."
Very well said Rico. In addition, all the tests that mainstream doctors use show false negatives thus in their minds proving them right.
When I was at my worst and my so called TX LLMD told me the western blot test showed previous Lyme infection and I was now cured although I was so disabled I couldn't even think. My support group at the time said you are not cured if you are so sick. It took someone calling me and explaining it to me for me to finally understand that, since my mental capabilities were so bad. So their thinking outside the box is not one of their strengths.
When I was at my worst and my so called TX LLMD told me the western blot test showed previous Lyme infection and I was now cured although I was so disabled I couldn't even think. My support group at the time said you are not cured if you are so sick. It took someone calling me and explaining it to me for me to finally understand that, since my mental capabilities were so bad. So their thinking outside the box is not one of their strengths.
I am confident that the vast majority of docs believe the medical "facts" they are taught by their professors, supervisors, subject matter experts, or that they read in a medical textbook. They will choose to believe those "facts" even when evidence in front of them contradicts it. They will go through all kinds of mental gymnastics to either explain or dismiss the contradictory evidence, rather than to question the "fact" they are assuming is true. It is nearly impossible to argue a person like this out of their opinion.
One argument they can't disagree with is that the mainstream belief that a month of abx cures all Lyme is that they cannot actually prove a person is cured. They just BELIEVE a person is curred = an assumption. Even the biggest Lyme deniers like Steere, Wormser, & Shapiro must admit they cannot PROVE a patient is cured. They state it as if it were fact, which confuses the masses into believing it is scientifically proven, when in reality, it is just their opinion.
The problem with a PCR test of joint fluid is that it is only useful if you actually have Borrelia in your joints. (I have no joint pain and never have...any joint test for me would surely be negative.) Your best bet for a joint fluid test is to take the sample out of a joint that hurts at that moment. But it can still be false negative, as the sample taken might not have enough to show a positive. On the plus side, if it's positive, it's definitive!
Is your ID doc familiar with a CD57? Although that might not be useful for you as both Lyme and HIV are known to suppress it. But maybe it would be helpful. How would he explain a low CD57 if your HIV levels are undetectable?
I hope your IGeneX tests are helpful!
If any of your Bart tests are positive, then I suggest you find some information online from an authoritative source that your doc will believe, information that describes symptoms and disease progression. I did this to convince my neuro to test me for Lyme. I gave him a detailed symptoms list and I highlighted everything I had, which was over 20 at that point.
There's definitely stuff out there. On dictionary.reference.com, I found this definition:
Medical Dictionary
bacillary angiomatosis n.
A skin disease characterized by raised, red lesions, caused by bacterial infection in individuals with weakened immune systems, and treatable with antibiotics, although potentially fatal if untreated.
On a quick search, I found this document from the UK (1993) that talks about both b.henselae and b.quintana, so this isn't exactly brand new information.
http://www.hpa.org.uk/cdr/archives/CDRreview/1993/cdrr0893.pdf
One argument they can't disagree with is that the mainstream belief that a month of abx cures all Lyme is that they cannot actually prove a person is cured. They just BELIEVE a person is curred = an assumption. Even the biggest Lyme deniers like Steere, Wormser, & Shapiro must admit they cannot PROVE a patient is cured. They state it as if it were fact, which confuses the masses into believing it is scientifically proven, when in reality, it is just their opinion.
The problem with a PCR test of joint fluid is that it is only useful if you actually have Borrelia in your joints. (I have no joint pain and never have...any joint test for me would surely be negative.) Your best bet for a joint fluid test is to take the sample out of a joint that hurts at that moment. But it can still be false negative, as the sample taken might not have enough to show a positive. On the plus side, if it's positive, it's definitive!
Is your ID doc familiar with a CD57? Although that might not be useful for you as both Lyme and HIV are known to suppress it. But maybe it would be helpful. How would he explain a low CD57 if your HIV levels are undetectable?
I hope your IGeneX tests are helpful!
If any of your Bart tests are positive, then I suggest you find some information online from an authoritative source that your doc will believe, information that describes symptoms and disease progression. I did this to convince my neuro to test me for Lyme. I gave him a detailed symptoms list and I highlighted everything I had, which was over 20 at that point.
There's definitely stuff out there. On dictionary.reference.com, I found this definition:
Medical Dictionary
bacillary angiomatosis n.
A skin disease characterized by raised, red lesions, caused by bacterial infection in individuals with weakened immune systems, and treatable with antibiotics, although potentially fatal if untreated.
On a quick search, I found this document from the UK (1993) that talks about both b.henselae and b.quintana, so this isn't exactly brand new information.
http://www.hpa.org.uk/cdr/archives/CDRreview/1993/cdrr0893.pdf
Exactly, I complained to state medical board of Texas, they agreed with all the mainstream docs. Frustrating.
Sad to say, the state medical board probably agrees with your docs. "Mainstream medicine." Bah.
my id doc, who i do like and is very smart and teaches at dartmouth, said that pcr tests were most accurate if they take fluid from the joint.. but didn't offer to do that. nor an mri..
what happens if my Barts comes back positive.
how will he treat me.? physically and emotionally. i get so mad at these multiple docs i have seen.
i can report them to the state medical board, then write an article for the papers.
what happens if my Barts comes back positive.
how will he treat me.? physically and emotionally. i get so mad at these multiple docs i have seen.
i can report them to the state medical board, then write an article for the papers.
I think most of it have been through that where the doc just doesn't believe in Lyme or they are afraid that their medical license will be revoked which has happened many times. Something has to be done to change the mainstream doctor's minds so we don't have to go through all of this torture.
thanks rico
yeah when i was talking to my ID doc on the phone i was asking myself,
why does he insist i don't have lyme and not to use igenx? why does he not test me for barts. i kep thinking he is wrong..
I may be wrong but no one has an answer for a year and i saw 5 , DR's
yes i got both the B. hen and B. quint. i think i read that erythromycin is the ABX for that?
bad shoulder and elbow and arm bone pain the past few days..
yeah when i was talking to my ID doc on the phone i was asking myself,
why does he insist i don't have lyme and not to use igenx? why does he not test me for barts. i kep thinking he is wrong..
I may be wrong but no one has an answer for a year and i saw 5 , DR's
yes i got both the B. hen and B. quint. i think i read that erythromycin is the ABX for that?
bad shoulder and elbow and arm bone pain the past few days..
I have heard several stories like yours where an IDSA doc bad mouths IGeneX. I am confident that it is pure rumor spread at their conferences, and in reality, they have no clue what they are talking about. That can't talk about the science of it as IgeneX would prove they are wrong about so many things. The CDC would never allow a fraudulent lab to stay open, and IgeneX has passed every CDC audit and even successfully jumped through the extra hoops required by New York state.
It is even worse in Canada where a high level health official said something like, There is a lab in California that will give any Canadian a positive Lyme result for a fee. After the loud outcry, he admitted he couldn't prove it, but he said he still believed it.
I never cease to be amazed at the mental contortions such educated people will go through in order to cling to the "truth" they have embraced and espoused.
Do you have symptoms of BA? It sounds painful. Did you get tested for both b.henselae and b.quintana? The crushing shin pain apparently was documented in WWII as part of Trench Fever, later determined to be b.quintana.
The whole question of number of hours for a tick to be attached is really a sign of how ridiculous the situation is about Lyme. Nobody really knows how many hours the tick has to be attached, as only one study was ever done, and it was flawed. It concluded that no mice with adult ticks attached under 24 hours developed Lyme. (I have no idea where the 36 hour number comes from. I have a friend whose doctor told her 18. Hunh?) But some say they necropsied the mice too soon (one month later) and might have missed some cases. Also, nymph ticks feed in less time and are responsible for more cases of Lyme than adults. But no one has ever done a study with nymphs. I think the fixation on 24 or 36 hours is more about the politics of Lyme and the IDSA and CDC insistence that it is rare, mild, and hard to get. Why else would they promote a policy of No Antibiotics for a tick bite unless you turn up sick later?
When I was in the hospital, my internist expressed disappointment at the money I had spent on IgeneX blood tests (we didn't have results yet) and he expressely discouraged me from seeing the "Lyme specialist" I mentioned. I asked him if there was anyone in network who was a Lyme specialist so I could either get diagnosed or rule it out and he said No. When I asked for an out of network referral to the LLMD, he said No. He discharged me with a bottle of Vicodin and told me to wait for my University neurology appointment. I cannot imagine what condition I would have been in had I listened to him. I certainly would have gone undiagnosed for several more months.
It is a weird feeling to be listening to a doctor knowing he is dead wrong, and that to save your own life, you have to "go off the reservation."
Hang in there! I got my Bart results back in under two weeks.
It is even worse in Canada where a high level health official said something like, There is a lab in California that will give any Canadian a positive Lyme result for a fee. After the loud outcry, he admitted he couldn't prove it, but he said he still believed it.
I never cease to be amazed at the mental contortions such educated people will go through in order to cling to the "truth" they have embraced and espoused.
Do you have symptoms of BA? It sounds painful. Did you get tested for both b.henselae and b.quintana? The crushing shin pain apparently was documented in WWII as part of Trench Fever, later determined to be b.quintana.
The whole question of number of hours for a tick to be attached is really a sign of how ridiculous the situation is about Lyme. Nobody really knows how many hours the tick has to be attached, as only one study was ever done, and it was flawed. It concluded that no mice with adult ticks attached under 24 hours developed Lyme. (I have no idea where the 36 hour number comes from. I have a friend whose doctor told her 18. Hunh?) But some say they necropsied the mice too soon (one month later) and might have missed some cases. Also, nymph ticks feed in less time and are responsible for more cases of Lyme than adults. But no one has ever done a study with nymphs. I think the fixation on 24 or 36 hours is more about the politics of Lyme and the IDSA and CDC insistence that it is rare, mild, and hard to get. Why else would they promote a policy of No Antibiotics for a tick bite unless you turn up sick later?
When I was in the hospital, my internist expressed disappointment at the money I had spent on IgeneX blood tests (we didn't have results yet) and he expressely discouraged me from seeing the "Lyme specialist" I mentioned. I asked him if there was anyone in network who was a Lyme specialist so I could either get diagnosed or rule it out and he said No. When I asked for an out of network referral to the LLMD, he said No. He discharged me with a bottle of Vicodin and told me to wait for my University neurology appointment. I cannot imagine what condition I would have been in had I listened to him. I certainly would have gone undiagnosed for several more months.
It is a weird feeling to be listening to a doctor knowing he is dead wrong, and that to save your own life, you have to "go off the reservation."
Hang in there! I got my Bart results back in under two weeks.
Bravo! It takes guts and you are right, no need to dwell on it until the answers come back from IgeneX.
Keep us posted.
Keep us posted.
Good for you -- it takes courage and pluck to go against a doc's insistence that way, and I would have done exactly what you did: get the tests done at IGeneX.
My view on ticks is ... if you see it, that's a helpful data point; if you don't see it, it doesn't mean you weren't bitten, and should not be used as evidence AGAINST infection -- at worst, it should be counted as a neutral point that the tick wasn't seen. And who knows how long the tick was on ANYWAY? They are so hard to see I'm surprised anyone ever does.
Keep us posted! -- sending you good mental vibes -- J.
My view on ticks is ... if you see it, that's a helpful data point; if you don't see it, it doesn't mean you weren't bitten, and should not be used as evidence AGAINST infection -- at worst, it should be counted as a neutral point that the tick wasn't seen. And who knows how long the tick was on ANYWAY? They are so hard to see I'm surprised anyone ever does.
Keep us posted! -- sending you good mental vibes -- J.
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