Originally Posted by Tunaboy (Post 1136291)

Did you get tested through Igenex?

I am in the middle of trying to set up appointments with some LLMD's. The basic Lyme test is around $200. I just want reassurance that I am negative for Lyme. Not sure how I will proceed if it comes back positive though. Last thing I want to do is take tons of abx and make myself sicker.

It just surprises me that lots of people still get clinically diagnosed even with negative results. Some get better, and some don't. The only reason I am doing this is because when I had onset of my pn, i had night sweats and swollen glands which usually signifiy some type of infection. Also, my test results through labcorp showed equivocal result, and positive 41 IGG. I basically just want to test again to reaffirm I am negative so I can check it off my list.

Originally Posted by Neuroproblem (Post 1136507)

AS neuropathy, joint pains/issues is a symptom of lyme and other disease, its easier to point to lyme, because it is more treatable than an autoimmune(which requires lifetime vigilance on symptoms)
I requested the list, because i was considering, but now im not certain(though i have a small feeling it is lyme), furthermore, my situation made me "mentally" vulnerablly to chronic lyme people, who tries to convince me to take this tests regardless, Everytime i come across a new medicine,test, medical problem i was research it, i also was type "what if, and if this is reliable", thats how i found out that the whole controversy around lyme, is very questionable. No i did not get tested from igenex, i currently and on welfare(because i dont work, im a struggling student, shouldnt been an excuse though"), since on welfare, doctors technically work for a public hospital, and that is work for city government, and is most likely in contact with cdc. I GET THE feeling they are aware "chronic lyme beleivers out there", and they do call it disseminated lyme, instead of chronic.

I was already suspicious when people mentioned that i may have lyme, because alot of things dont fit, since Llmd, do no take insurance, neither that the tests they constantly profess as the gold standard of lyme testing.
I am also aware they will try to get you to get tested for coinfections associated with lyme(which is even more expensive than the lyme test through igenex).
LLMD can charge an absurd amount of money, as revealed by the OP, up to 1200/per visit, or some llmd can try to milk you, by x amount$/time can very high if you dont have that much income. Theres is a reason why there is insurance, so you dont get the bill for full cost of a medical procedure.

AS in my previous posted, i also noticed that people dont even get better even while under the care of thier llmd, some people got even sicker,(infections, convulsions, gastrintesnial problems) this is due to the antibiotics, and herbal supplements they are taking. But heres the catch, chronic lyme believers, say that if you are not "feelling any symptoms", it means you are still sick, once you feel symptoms, thats mean lyme is getting killed. I find this logic very twisted.

Clinical diagnosis is based off on textbook case symptoms, if fall under a certain amount symptoms, int his case lyme" bulleyes, joint pain, neurological disoder, this is excluding any blood test, imaging. lyme can be clinically diagnosied, if there was a bullseye, or if you fell ill after been in a tick area, or bitten by a tick.
Actually LLmd, ND are doctors, hence the MD in thier names. but these doctors chose a questionable path in thier career.
@healthgirl, low ferritan ca be a sign of iron -anemia deficiency, copper deficiency that needs to be addressed. Does the llmd want you to go back toto him? the llmd was considerate in thinking you may have problems unrelated to lyme

Originally Posted by Healthgirl (Post 1134938)

That doesn't matter. This dr. told me he treats clinically.
It seemed like the buzzing, tingling, burning, migrating joint pain was something he hears pretty often.

Originally Posted by Neuroproblem (Post 1134957)

i would like to add in here, i went to a lyme forum, from my understanding theres a whole population out there that believe in chronic lyme, dispite unable to show verifiable evidence, its almost like a cult. from my understanding these llmd that charges out of pocket, raises a red flag already, and they seem to agree and say what you want to hear as fact. They do have a few points that are correct, lyme is not easily treated when in the late stages. One other i noticed is that llmd chronic lyme believers use "chronic lyme", while other doctors use late stage-disseminated lyme disease, essentially means the same thing, but they say that to avoid probably legal issues.
-one of the tests that lyme doctors seem to use is IGENEX, they claim that it is accurate testing, but they were questioned by agencies, and only got the companies words "that our testing is sufficient within the laws of the state".
Heres the catch, even the lyme doctors and patients dont even believe that its accurate, they dismiss thier own test they promote, these igenex tests are very expensive, up to 200-1200 per test, the more expensive one is using co-infection panels. the lyme doctors claim they can diagnose lyme as symptoms and not by tests, there is something very wrong. so many diseases can mimic lyme, and lyme can also mimic diseases as well, so how can they tell the difference.
-Sometimes other doctors suspect lyme disease, but they will only do the tests that the cdc has put out.
- i contacted the igenex for cost of test, and was amazed by the expensiveness of the test. Igenex and some other labs will not be covered by insurance, so it can end up super expensive. Igenex and some other labs are rejected because of the reliability of thier test, and its not approved officially.
-the other big problem is that llmd and the patients are prescribed with antibiotic regiments that can last several months to more than a year, this is extremely hazardous, as long term use has side effects, and make yourselves vulnerable to antibiotic resistance, this is also promotes anti-biotic resistance as well. Many people actually get sicker while under this.
-also they proposed some wierd herb/supplement protocols which are also questionable.
When i question people about this, they become incredibly defensive, and start bashing me on the posts and calling me a liar(on other forums).
I think this is more like a conspiracy then a hoax, between the llmd and the lab test companies, because they know they can make money off of it.
llmd and lab tests that they order do not cover insurance. theres even laws protecting doctors/tests from being prosecuted or reprimanded for unethical conduct for being doctors.
When i first developed my undiagnosed cause of PN, i suspected lyme, but after few weeks of research i dont believe this is lyme, although i was in a tick area in the bay area, i took every pre-caution, wore chemical haz suits, gloves, deet sprays, "socks for the shoes". i was doing some conservation work.
You can go out of your insurance and pay out of pockets to see these doctors, but be warned do so at your own risk.
I also looked online about lyme doctors and thier patients, some of the lyme doctors caused deaths of patients with thier treatments, and some famous ones were even sued at one point.

Originally Posted by ellsac (Post 1135382)

Labs are unfortunately going to get things wrong.

I have autoimmune Addison's disease, so I get blood work every few months no matter what. Out of all of my blood draws with Quest-only once have I had an issue. Sometimes it depends on the specific branch being sloppy, but my experience with Quest in general has been a good one.

I had Lyme disease when I was 10 years old. I had it for a year before it was caught-because it really wasn't well known. This was around 1989, and I live in NJ. We lived next to the woods, and I had ticks on me all the time. I can say this much about Lyme. Doctors are really torn on it. Even a lot doctors who are not LLMDs consider Lyme to be different than your average bacterial disease. It is a spirochete, as is Syphilis, and both have shown to be more difficult to treat, especially in later stages. There has been medical research that shows that the bacteria can morph into more than one form, causing the treatment difficulties. I was on and off antibiotics for a year when first diagnosed, because I kept relapsing with symptoms.

That isn't to say that I don't think a lot of the Lyme Disease boards are full of very obsessed individuals that are misinformed and paying attention to large quantity of pseudoscience...or that I think huge and dangerous doses of antibiotics are really a good treatment, even if chronic Lyme disease were to be a real thing.

The other possibility is that chronic Lyme is more or less an autoimmune issue that got kicked off by a longer term Lyme infection. Most of my current doctors feel that my being very sick with Lyme as a child (I had a range of symptoms before finally getting diagnosed-crossed eyes, almost constant tinnitus, napping all the time, emotional issues, migrating arthritis, headaches-and finally I woke in the night unable to walk-my knees had completely frozen-this is what finally led to my doctor ordering the test, positive blood work, and diagnosis) could have set me up for health problems later in life, such as the autoimmune Addison's I got diagnosed with about 6 years ago.

Now I have small fiber neuropathy of unknown origin, and every possible cause has been explored. My doctors all know of my Lyme background. When I was desperate this past summer, I did go to a Lyme specialist and had three months of intensive antibiotics therapy, just to see if there was improvement. Sorry to say that this was not the case, and I am unwilling to take endless antibiotics hoping to be cured.

Even if chronic Lyme does exist, there is some real divide about how it should be treated. Some doctors-often the LLMDs-are very insistent on antibiotic therapy. I theorize that this probably did help some people who unknowingly had late stage Lyme disease for a very long time. It is entirely possible, especially if you live in the Northeast. Deer ticks are tiny, and can bite in places you can't even see. Not everyone gets a rash, either. I didn't have one as a kid. Blood tests for Lyme can sometimes be misleading in later stages as well, because it ultimately depends on the person's immune system response since you are testing for the antibodies, and not the actual bacteria...and often times in chronic infections, the immune response can become cyclical. There have been individuals who tested negative, but after a few weeks of treatment and retesting, tested positive. A theory for this is that the antibiotics woke up the fight in the person's immune system.

Of course I claim to be no expert, and have no idea whether real Chronic Lyme exists. I do think there are a lot of people who are being drained of their money and resources, and have become completely fanatical about it.

I do personally feel that if one DOES have Lyme disease, late stage, chronic, acute, or otherwise, there would have been a time in which you might be able to pin point when you got it-rash or no rash. I was sick with what was thought to be a flu for about 3 weeks, more than likely this was the initial infection for me, because it was summer, and certainly flu season. I had a very high fever, and was very ill. Once it subsided, the parade of weird, vague, coming and going symptoms began. There was no doubt that there was something wrong with me.

I'm not sure if this has even been helpful, but I wanted to share my thoughts on it any way.

Originally Posted by Neuroproblem (Post 1136155)

I actually emailed igenex, and they sent me thier test list, and cost, for different panels, they were very expensive, hundreds to more than a thousand.
tHE REASON why a non-llmd pcp/specialist, because the tests is not widely accepted, and igenex is a private lab, and thier motivation is to make pure profit, and the tests itself are not recognized by them. Most experimentation of science are done in peer-review journals, like new england of medicine journal, or something like nature or science magazines, these are technical data on experiments that have been done and verified. igenex or chronic lyme disease tests dont have this, there are sites out there claiming they can see lyme in multiple forums, but those are anecdotl, they dont show any evidence.

I had to ask the question: "why is igenex the only one, testing lyme and coinfections, and why a significant portion of thier tests are always positives?
-just another note, chronic lyme believers dont even believe in the accuracy of the test, they use, and instead believe that they have lyme, because thier llmd said so.

Originally Posted by Apollo (Post 1140944)

No, Neuroproblem, Igenex is NOT the only lab doing the more advanced "Western Blot" Lyme testing! For example there is "Stony Brook" among many other quality Lyme labs.

My personal Igenex tests in 2007 and 2008 showed a weak 30-31 band, which is Lyme specific, but technically the test result was considered "equivical".

The big Lyme testing game-changer was the revolutionary "Lyme Culture" which was developed by the folks at "Advanced Labs" in Philadephia and finally brought to market in 2011.

Here is a direct link to their website:


http://www.advanced-lab.com/


I did the Borrelia culture in late 2012, and it was positive for "Borrelia Burgdorferi" (the most common form of classical Lyme Disease).

Having a positive (and gold standard culture) then confirmed what I had strongly suspected since my symptoms began in ernest in 2007; namely, that I had Lyme.

I urge you to consider having the Lyme culture test done, and I know that the $595.00 price tag is steep but, if it is positive, then you can finally focus on treating properly the real underlying cause of your issues.

Thanks!

David

Originally Posted by EmilySH (Post 1140967)

Hi David,

I just wanted to rack your brain on my current situation, for you are very experienced in the Lyme world. I have been having a host of neurological symptoms since late Jan., burning feet much prior to Jan. Please refer to my past post if you have the time :) I was just recently diagnosed as having Ehrlichosis and possibly RMSF (I will be retested in a week or so, along with a Lyme retest). Would an acute infection of these two lead to neurological symptoms? I am not finding many resources online for the neuro complications associated with the Ehrlich. so now I am beginning to doubt my negative Lyme test. I tested negative for Lyme but now I am highly considering seeing a LLMD for more specific testing for the Lyme. I also just had a EMG/NCS, is there anyway nerve damage would show up or would a abnormal result point to Lyme?
I have read that co-infection is common, then I read it is rare? Any insight on the truth? I am terrified of having the Lyme and truly trying to focus on treating what I know I do have, the Ehr and seeing how I improve. Thanks so much,
Emily

Originally Posted by Apollo (Post 1141014)

Hello Emily, and I am sorry for your suffering.

Coinfections are the rule with Lyme Disease now, rather than the exception, and the most common co-infections are "Bartonella" and "Babesia".

Bartonella is always to be expected whenever neurological symptoms are predominant, such as with small-fiber neuropathy.

One of the better Lyme doctors out there is Dr. Joseph Jemsek, who is located in Washington, D.C.

Dr. Jemsek has a great website with a wonderful write-up on Lyme and its most common co-infections. Click on the link below, and then select "Knowledge Base" for either the long or short version:


http://www.jemsekspecialty.com/drjemsek.php


Feel better!

David


:)