Aa
news on cfids/ME
this was interesting. especially the comments at the bottom.
http://www.dailymail.co.uk/health/article-2204765/Viruses-blame-ME-Study-rules-old-theory-all.html?ito=feeds-newsxml
http://www.dailymail.co.uk/health/article-2204765/Viruses-blame-ME-Study-rules-old-theory-all.html?ito=feeds-newsxml
The whole insurance thing is a mystery the way they pay one time but not the next but let's hope your Medicare will pay.
I just checked my credit card. i was charged 35 for the blood draw kit at the naturopath/llmd office and have not been billed by igenx yet.
i have medicare.
cross my fingers!
i have medicare.
cross my fingers!
I have heard of doctors who will pay for the IgeneX tests and then bill insurance/Medicare/Medicaid and/or the patient. Sounds like you got a doc that does that, which is great! I don't think my doc does that.
Insurance seems like a cr*p shoot. I have done three Metametrix analysis tests. The first one I had to pay nearly half of $395. The second time, I paid around $50. The third time, I paid nothing. I have no clue why they covered more each time. At least it is moving in my favor.
Insurance seems like a cr*p shoot. I have done three Metametrix analysis tests. The first one I had to pay nearly half of $395. The second time, I paid around $50. The third time, I paid nothing. I have no clue why they covered more each time. At least it is moving in my favor.
I didn't pay igenex up front, my LLMD sent it in and somehow their bill was paid. I have Aetna and Medicare for disability. Maybe that is why? Not sure.
youvegotto be kidding..yeah i started with fibro. dxed Feb 12.. they put me on Lyrica...
.was on the research and forum path then realized i do not have fibro.
then went to CFIDS
then Lyme.
my nurse wants me to stop looking into lyme..
.was on the research and forum path then realized i do not have fibro.
then went to CFIDS
then Lyme.
my nurse wants me to stop looking into lyme..
Youvegottobekidding - I will bet you're right. I think there are a bunch of actual diseases, infectious and otherwise, that result in a condition that gets classified as CFS. It just shows how much doctors are enslaved to test results, and are afraid to try out treatments on a patient for fear of harming them. I am so sorry you went 28 years w/o a diagnosis. I guess you can old on to the joy of knowing it will get better, and that you aren't condemned to CFS forever!
Gibsongal - one clarification on IGenex, they do not take any insurance. You have to pay up front. However, most insurance companies will reimburse part or all of the cost. Mine reimbursed at their usual rate only because my PCP ordered the tests. (It would have been zero if the out of network LLMD had ordered them.) They also gave me an extra percentage because it was urgent, so I ended up getting about 2/3 back. I read about one person who said their insurance company would cover all of an IGeneX test cost only if it were positive. How is that for keeping their costs under control at the expense of the patient!
Gibsongal - one clarification on IGenex, they do not take any insurance. You have to pay up front. However, most insurance companies will reimburse part or all of the cost. Mine reimbursed at their usual rate only because my PCP ordered the tests. (It would have been zero if the out of network LLMD had ordered them.) They also gave me an extra percentage because it was urgent, so I ended up getting about 2/3 back. I read about one person who said their insurance company would cover all of an IGeneX test cost only if it were positive. How is that for keeping their costs under control at the expense of the patient!
Well said! I think that's why the docs use the weasel-word 'syndrome' about CFS, as a collection of symptoms rather than a condition with an identifiable cause. The docs figure (correctly) that if someone goes home with a name for what they have, it's less worrisome. I understand the psychology, but it should not be an excuse the medical profession hides behind to avoid taking the situation seriously. /end rant/ :)
Not to sound like a broken record but rather to save you from the heartache of being misdiagnosed the way most of us have been, you really need to see an LLMD. The regular labs gave most of us false negatives. You can get an igeneX kit and have your doctor draw the labs. IgeneX takes most insurance. Make sure they check for co- infections.
My Lyme brain thinks Rico went that route.
Otherwise you will waste time like everyone else, while getting sicker waiting for treatment, treatment needs to be longer than a month.
Keep us posted!
My Lyme brain thinks Rico went that route.
Otherwise you will waste time like everyone else, while getting sicker waiting for treatment, treatment needs to be longer than a month.
Keep us posted!
I know I'm coming into this late, but I spent two years full time on a CFS forum (when I supposedly had CFS) and I am convinvced about 80 percent of them have lyme or bart or babs, about ten percent have adrenal exhaustion and about ten percent have various others like pernicious anaemia, thyroid disease, Addisons disease, syphilis etc.
I spent over 20 years reading about CFS and I just don't believe it's a single illness or that, indeed, it is an illness. It's what doctors say when they're too stupid or lazy to figure out what is really wrong.
If this construct of CFS as a dustbin for people with undiagnosed diseases had never been invented, I might not have had to wait 28 years for my lyme diagnosis.
Call me controversial if you like, but that's my opinion, and it's based on two decades of research, BTW!!!
I spent over 20 years reading about CFS and I just don't believe it's a single illness or that, indeed, it is an illness. It's what doctors say when they're too stupid or lazy to figure out what is really wrong.
If this construct of CFS as a dustbin for people with undiagnosed diseases had never been invented, I might not have had to wait 28 years for my lyme diagnosis.
Call me controversial if you like, but that's my opinion, and it's based on two decades of research, BTW!!!
rico such wisdom! you are cool! jackie..mojo thanks!
the nurse mentioned the "month of doxy" i had in june and i told her i don't think doxy works if it is later in the game. and she then agreed and said that late stage with neuro is a 1 month IV ABX.
i didn't say anything but agreed and say yeah and i really don't want to do that...
she wants me to stop thinking Lyme and i told her that is why i was looking into CFIDS because they are similar..
then i laughed and told her i probably have a brain tumor!
she laughed and said she probably has one too.
She really is nice and working to get me a neuro work up. She said that the ID doc did talk the the staff and no one had suggestions.
so on to neurology.
dare i ask for another WB on monday?
Meanwhile i need to find a PCP/ MD/ LLMD that takes my insurance that I like and is taking new patients. impossible!
when i tried to call around no one is taking new patients.
struck out on the 2 new LLMD's i called lately. one has a 60 person waiting list. the other doesn't even take names for a list..
this was my problem in just finding an MD. I called about 5.
The social worker at the ID office is going to see what he can do to get me an MD.
and so it goes..
best to you all sleep well.
Dee
===============
the nurse mentioned the "month of doxy" i had in june and i told her i don't think doxy works if it is later in the game. and she then agreed and said that late stage with neuro is a 1 month IV ABX.
i didn't say anything but agreed and say yeah and i really don't want to do that...
she wants me to stop thinking Lyme and i told her that is why i was looking into CFIDS because they are similar..
then i laughed and told her i probably have a brain tumor!
she laughed and said she probably has one too.
She really is nice and working to get me a neuro work up. She said that the ID doc did talk the the staff and no one had suggestions.
so on to neurology.
dare i ask for another WB on monday?
Meanwhile i need to find a PCP/ MD/ LLMD that takes my insurance that I like and is taking new patients. impossible!
when i tried to call around no one is taking new patients.
struck out on the 2 new LLMD's i called lately. one has a 60 person waiting list. the other doesn't even take names for a list..
this was my problem in just finding an MD. I called about 5.
The social worker at the ID office is going to see what he can do to get me an MD.
and so it goes..
best to you all sleep well.
Dee
===============
Even on the outside chance that an ID doc is willing to diagnose you with Lyme when you're CDC negative on blood tests, it is highly unlikely that any ID doc will treat you for more than a month as per the guidelines.
Someone from the IDSA recently admitted in an interview that while the Lyme guidelines are "optional," they do enforce their guidelines within their own organization. When probed further, this person stated that the organization has the right to enforce its standards within its own organization.
The big "Ah-Ha" in this statement is that the IDSA has finally admitted that they will not tolerate any members who stray from the guidelines. IDSA docs are the gatekeepers of IV abx in hospitals, so if you cross the IDSA, you could lose your ability to treat in a hospital. The other docs in your practice (if you have any) will probably kick you out so they don't get in trouble, too. You could be threatened or dropped by insurance companies, effectively crippling your ability to practice. You could also be reported to the state medical board by your fellow IDSA members, depending on whether your state still conducts witch hunts for LLMDs.
I knew a woman who was able to get 4 months of IV abx for her late stage Lyme, but I can't remember if it was from a rheumie or a neuro. She felt great but 8 months later it was back. No one would touch her again telling her that she must have "something else" as 4 months would surely have cured her completely.
Nearly all the Lyme treating doctors' names I got from my state's Lyme Disease Assoc were family physicians. They usually don't have hospital privileges and are less likely to be scrutinized for long term antibiotics. The only ones who would do IVs, though, were the out of network LLMDs. (I knew I needed IV as I had previously been given prednisone and I had CNS symptoms. Not everybody needs IV abx.).
You would probably be okay with just orals. If you can find a sympathetic GP who will work with an LLMD and rewrite the prescriptions so your insurance covers them, that can greatly reduce the cost of an LLMD. I am lucky...my insurance covers regular prescriptions regardless of whether the prescribing MD is in network or not (exception for shots and IVs).
On POTS, the LymeMD blogger has mentioned it more than once in Lyme patients. However, POTS isn't well understood. Even if you got tested and diagnosed with it, it might not convince a doctor you have Lyme, unless that doctor already understands WB tests and that POTS can be a symptom of Lyme. It is useful to an LLMD, though, especially if your blood tests are equivocal.
Someone from the IDSA recently admitted in an interview that while the Lyme guidelines are "optional," they do enforce their guidelines within their own organization. When probed further, this person stated that the organization has the right to enforce its standards within its own organization.
The big "Ah-Ha" in this statement is that the IDSA has finally admitted that they will not tolerate any members who stray from the guidelines. IDSA docs are the gatekeepers of IV abx in hospitals, so if you cross the IDSA, you could lose your ability to treat in a hospital. The other docs in your practice (if you have any) will probably kick you out so they don't get in trouble, too. You could be threatened or dropped by insurance companies, effectively crippling your ability to practice. You could also be reported to the state medical board by your fellow IDSA members, depending on whether your state still conducts witch hunts for LLMDs.
I knew a woman who was able to get 4 months of IV abx for her late stage Lyme, but I can't remember if it was from a rheumie or a neuro. She felt great but 8 months later it was back. No one would touch her again telling her that she must have "something else" as 4 months would surely have cured her completely.
Nearly all the Lyme treating doctors' names I got from my state's Lyme Disease Assoc were family physicians. They usually don't have hospital privileges and are less likely to be scrutinized for long term antibiotics. The only ones who would do IVs, though, were the out of network LLMDs. (I knew I needed IV as I had previously been given prednisone and I had CNS symptoms. Not everybody needs IV abx.).
You would probably be okay with just orals. If you can find a sympathetic GP who will work with an LLMD and rewrite the prescriptions so your insurance covers them, that can greatly reduce the cost of an LLMD. I am lucky...my insurance covers regular prescriptions regardless of whether the prescribing MD is in network or not (exception for shots and IVs).
On POTS, the LymeMD blogger has mentioned it more than once in Lyme patients. However, POTS isn't well understood. Even if you got tested and diagnosed with it, it might not convince a doctor you have Lyme, unless that doctor already understands WB tests and that POTS can be a symptom of Lyme. It is useful to an LLMD, though, especially if your blood tests are equivocal.
thanks,
talked with the nurse today. they are going to get me into a neurologist.
they will try to set up the appointment soon.
finally a little more testing progress..
oh i can't find my igenx tests! probably put it in a "safe" place ha ha
will have to have a copy..
talked with the nurse today. they are going to get me into a neurologist.
they will try to set up the appointment soon.
finally a little more testing progress..
oh i can't find my igenx tests! probably put it in a "safe" place ha ha
will have to have a copy..
My LLMD will file my insurance and so far, even though she is out of network, they have reimbursed me 100%.
Good luck!
Good luck!
Most insurance will reimburse at least something for out-of-network docs.
Let us know how it goes with the ID doc and his reaction to the IGeneX tests -- fingers crossed for you! (X)
Let us know how it goes with the ID doc and his reaction to the IGeneX tests -- fingers crossed for you! (X)
Thanks ladies,
I don't know how to handle the ID doc. He has not seen my IGENX test yet. He thinks they are in co hoots with the lyme docs. He will see them on Monday. Just found my CD57 tests
% CD8-/CD57+lymphs 3.3------ref.range 2.0-17.0
abs Cd8-CD 57_lymphs 73 ref range 60-360
this was at labcorp. didn't have the results back when i last saw the ID doc.
I have some leads on some LLMD's that might take my insurance
The one i saw to get the IGENX tests does not take my insurance and am trying to figure out if i can afford to schedule with him..
$$$$
so if my ID doc is open to interperating the igenx tests then i will not have to pay the LLMD..
or round and round we go to find a doc that takes my insurance that is not a dumb A**
Making an appointment with my previous ID doc...I switched because he was at a loss..now with these tests perhaps he will know.
I don't know how to handle the ID doc. He has not seen my IGENX test yet. He thinks they are in co hoots with the lyme docs. He will see them on Monday. Just found my CD57 tests
% CD8-/CD57+lymphs 3.3------ref.range 2.0-17.0
abs Cd8-CD 57_lymphs 73 ref range 60-360
this was at labcorp. didn't have the results back when i last saw the ID doc.
I have some leads on some LLMD's that might take my insurance
The one i saw to get the IGENX tests does not take my insurance and am trying to figure out if i can afford to schedule with him..
$$$$
so if my ID doc is open to interperating the igenx tests then i will not have to pay the LLMD..
or round and round we go to find a doc that takes my insurance that is not a dumb A**
Making an appointment with my previous ID doc...I switched because he was at a loss..now with these tests perhaps he will know.
I had dx of fibromyalgia and CFS, even failed the tilt table test, lol but it turned out to be lyme and co- infections. I agree with what Jackie said above.
If your insurance covers things like a doc at a big hospital and tilt-table tests, then why not Lyme tests, if you are unable to pay for them out of pocket and if the reimbursement from your insurance is not enough to make it work for you financially?
IMHO, an ID doc who hasn't broadened his view of a possible Lyme etc. infection in ten months of treatment isn't likely to start now, so I'd be looking in to how I could get the Lyme+ tests done. The quote you pasted above even says Lyme should be ruled out before a POTS diagnosis can be made.
So I guess I don't understand why you are not addressing Lyme head on. Sorry to be blunt, but when the last place you see your car keys was on the kitchen counter, why ask the neighbors where your keys are?
IMHO, an ID doc who hasn't broadened his view of a possible Lyme etc. infection in ten months of treatment isn't likely to start now, so I'd be looking in to how I could get the Lyme+ tests done. The quote you pasted above even says Lyme should be ruled out before a POTS diagnosis can be made.
So I guess I don't understand why you are not addressing Lyme head on. Sorry to be blunt, but when the last place you see your car keys was on the kitchen counter, why ask the neighbors where your keys are?
once and for all ha!
"Many infectious agents have been cited as implicated in ME/CFS including EBV, Lyme, parvovirus, enteroviruses, Q fever, RRV, mycoplasma and HHV-6." National alliance for ME
I have been with my "new" ID doc for 10 months and he has not ordered any other tests. no stool sample to rule out other bugs, no MRI, no tests on my endocrine system ..nothing. And he is at a prestigious hospital DHMC. I see him on Monday. I will have to control my anger and tears and get some tests ordered.
So i keep searching for reasons why i am ill.
I want my BP done on a tilt table. test for POTS, when i get up just to get my morning coffee, at noon, and come back upstairs my heart is really going..
"POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS. A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made. Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed.[citation needed] A blood test may be performed to verify abnormally high levels of norepinephrine present in some POTS patients."
"Many infectious agents have been cited as implicated in ME/CFS including EBV, Lyme, parvovirus, enteroviruses, Q fever, RRV, mycoplasma and HHV-6." National alliance for ME
I have been with my "new" ID doc for 10 months and he has not ordered any other tests. no stool sample to rule out other bugs, no MRI, no tests on my endocrine system ..nothing. And he is at a prestigious hospital DHMC. I see him on Monday. I will have to control my anger and tears and get some tests ordered.
So i keep searching for reasons why i am ill.
I want my BP done on a tilt table. test for POTS, when i get up just to get my morning coffee, at noon, and come back upstairs my heart is really going..
"POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS. A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made. Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed.[citation needed] A blood test may be performed to verify abnormally high levels of norepinephrine present in some POTS patients."
Oh, yeah. And I forgot to mention...
I was really taken aback at the doctor's statement in this article that they have ruled out viruses as a cause for CFS "once and for all." The study merely looked for evidence of two particular viruses that had been previously linked to the condition. This study only disproved those two viruses as the cause, not ALL viruses!
It reminds me of the studies done to test a second month of Rocephin for still-sick Lyme patients and concluding that extended abx offers no benefit. Hunh?
Have medical schools around the world failed to ensure their students can follow basic logic and deductive reasoning before graduating them as MDs?
I was really taken aback at the doctor's statement in this article that they have ruled out viruses as a cause for CFS "once and for all." The study merely looked for evidence of two particular viruses that had been previously linked to the condition. This study only disproved those two viruses as the cause, not ALL viruses!
It reminds me of the studies done to test a second month of Rocephin for still-sick Lyme patients and concluding that extended abx offers no benefit. Hunh?
Have medical schools around the world failed to ensure their students can follow basic logic and deductive reasoning before graduating them as MDs?
CFS/ME and Fibromyalgia actually have disease definitions, and exist outside of Lyme. I know one person with each, and neither of them has Lyme. CFS goes away in some people. Fibro generally doesn't, but has flares. I have only read of one person recovering from Fibo, and it was anecdotal and second hand. Supposedly the guy took lots of antibiotics, antivirals, and antiparasitics. Obviously, this person had a sympathetic doctor willing to try anything...a spouse or parent, perhaps?
Unfortunately, since the causes aren't known (both are thought to be associated with viral infections, a dysfunctioning immune system, and an unknown genetic susceptibility) and there are no tests, doctors use them as a default when they can't find anything else. What is really unfortunate is when there are symptoms that don't fit the disease/condition, and they give the diagnosis anyway because they don't know what else it could be.
IGeneX recently worked with Stanford University's CFS group to study the proteins in the CSF of late stage Lyme patients and CFS patients. They found hundreds of differences, concluding that CFS is a separate condition from Lyme. (Stanford has become somewhat sympathetic to Lyme patients as they were finding quite a few in their CFS clinic who ended up being diagnosed with Lyme.)
If we could just get the CDC to change the disastrous two tier testing protocol for Lyme and instead, look at any Lyme specific antibody on a WB, the tests would catch a lot more cases of people who would be otherwise "diagnosed" with Fibro or CFS/ME. We also need to require an ILADS-style full work up for Lyme before a diagnosis of CFS or Fibro can be given.
If only all the symptoms of CFS and Fibro weren't also on the list for Lyme! At least all have something in common...a messed up immune system.
Unfortunately, since the causes aren't known (both are thought to be associated with viral infections, a dysfunctioning immune system, and an unknown genetic susceptibility) and there are no tests, doctors use them as a default when they can't find anything else. What is really unfortunate is when there are symptoms that don't fit the disease/condition, and they give the diagnosis anyway because they don't know what else it could be.
IGeneX recently worked with Stanford University's CFS group to study the proteins in the CSF of late stage Lyme patients and CFS patients. They found hundreds of differences, concluding that CFS is a separate condition from Lyme. (Stanford has become somewhat sympathetic to Lyme patients as they were finding quite a few in their CFS clinic who ended up being diagnosed with Lyme.)
If we could just get the CDC to change the disastrous two tier testing protocol for Lyme and instead, look at any Lyme specific antibody on a WB, the tests would catch a lot more cases of people who would be otherwise "diagnosed" with Fibro or CFS/ME. We also need to require an ILADS-style full work up for Lyme before a diagnosis of CFS or Fibro can be given.
If only all the symptoms of CFS and Fibro weren't also on the list for Lyme! At least all have something in common...a messed up immune system.
And the conclusion is ...... "Experts believe there may be a genetic cause for ME, or it may be triggered by a traumatic event or a weakness in the immune system."
No mention of Lyme bacterial infection (e.g., Lyme+)!
"None so blind as those who will not see .... !"
Thanks for posting this.
No mention of Lyme bacterial infection (e.g., Lyme+)!
"None so blind as those who will not see .... !"
Thanks for posting this.
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