posted
He didnt say i for sure did not have lyme BUT ...
He did say Igenex were a bunch of crooks with looney doctors, and that the patients there are begging for a diagnosis or something like that.. and he said lyme doesnt really exixt in my area ( southern indiana)
he asked if I have cats (i have 2) and asked if I have rabbits (i used to a LONG time ago) and if I ever had a rash (I had a horribly painful itchy rash on my neck last summer that literally took months to completely go away. i have no idea what it is (was) NOT poision ivy etc.
he requested a bartonella test, among other things. And to re-test for lyme at the local lab (i guess because he doesnt trust igenex) I had about 8 vials of blood taken at least...
we will see what the lab results show, he wants me to come back in two weeks... my temp was 98 degrees btw which seems normal enough.
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
SO....
He said that lyme doesn't exist in your area, but then later told you he did have a few lyme patients every summer?
If you think you have lyme, and want to go long term treatment with abx, you will need to get a lyme literate MD, which unfortunately, there are none within a 8 hour drive, so you would have to travel (most of us do...)
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Also, FYI, IgenX lab has passed numerous tests, including from New York, which has very high standards. You can go to IGeneX website and download the information.
And your MD should be careful, because what he is doing is slandering the lab.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Probably that they are cured with a round of doxy.
I hope he's not the one who almost killed a friend of mine with 3 mths IV treatment. He did
get cured with a 106 fever and 2 weeks in the hospital. Seizures, organ failure, comatose. He is a very lucky man.
When you get done with him, tell him ticks can float, be carried in the winds and on animals
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
He doesn't know what he's talking about in regards to Igenex. I've said this countless times, and I'll keep saying it. They are "officially" CLIA and Medicare providers. They have passed a number of independent (blinded) laboratory analysis via other labs, and been issued proper Health Department liscensure in 1/5th of the United States.
Their testing was also scrutinized heavily in the 90's and earlier in the decade, only to find their tests were in-fact superior and accurate. They were not "perfect" -- but they earned a rightful place as an officla research laboratory.
Anyone who criticizes their credibility is simply foolish and hasn't investigated the facts.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Just to prove I'm right -- which I usually am -- let me put a final nail in the coffin of his argument "There really isn't any Lyme is Southern Indiana."
The offical home page for your state, located at www.in.gov states:
"Lyme disease is the most commonly diagnosed tick-borne disease, both in Indiana and the nation. It was first recognized in the United States after a high incidence of arthritis was observed in children around Lyme, Connecticut in the mid 1970s.
Lyme disease has been identified in many states, but 90 percent of cases are reported from approximately 100 counties located along the northeastern and mid-Atlantic seaboard, from Massachusetts to Delaware, and in the upper north-central region of the U.S., including Wisconsin and parts of Minnesota.
Since 1990, there have been 280 Lyme disease cases reported from 70 counties in Indiana, 19 percent of which involved individuals less than 15 years of age. The age range for these Lyme disease cases is from 1 year to 89 years of age. Some Indiana residents were infected while traveling to high-risk states, but most were infected around their home, on the job, or at outdoor recreation sites around the state. "
Here is further proof, an official map identifying the CDC recognized cases in both Southern as well as Northern Indiana.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Your state website goes on further to say:
'Early Lyme disease responds to antimicrobials such as doxycycline, amoxicillin, or azithromycin when prescribed for two to three weeks. Treatment for late or chronic Lyme disease often requires the use of intravenous antimicrobials, usually ceftriaxone or penicillin, typically for two or three weeks. The prescribing of antibiotics to an individual with a history of a tick bite acquired in an endemic area, but who are not symptomatic is controversial.
While Ixodes scapularis, the deer tick, has been found in 59 Indiana counties, the risk for acquiring an infection appears to be quite low even in the counties where a high number of ticks have been identified. Indiana counties that are judged to have a moderate risk of exposure to Lyme disease are Jasper, Lake, LaPorte, Newton, Porter, Pulaski, Starke and Vigo. All other Indiana counties are considered to be low risk or minimal risk. To view the national risk map prepared by the Centers for Disease Control and Prevention (CDC), click here. "
Note your state even accepts the reality of "Chronic Lyme" disease." In-fact, it mentioned that Lyme is a "clinical" diagnosis on your own state website. Their treatment parameters are incorrect, and their numbers are minimized since they're following CDC reports. For every case that gets reported their are probably hundreds that aren't. (That's a guess, not a fact)
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
XxDarkEuphoriaxX, you didn't mention anything about your symptoms. I can only say that I've recently come to appreciate the great overlap between bart and lyme and how easy it is to mistake one for the other.
I'm obviously not in a position to say that you do or don't have one or the other, but if you have the overlapping symptoms it's a good idea to get tested for bart as well.
I kind of have to chip in with the others on the Igenex kerfuffle. An ID I've seen said the same thing, that they always tested positive even on people who never so much as saw a tick. This despite being presented with Igenex tests for my son and myself who have many of the lyme symptoms with negative Igenex tests. I'm not sure what to say about the cognitive dissonance there, it's just overwhelming.
Posts: 98 | From Maine | Registered: Jul 2009
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posted
XxDarkEuphoriaxX, PLEASE GET TO AN LLMD!!! Maybe your doc is influenced by the Infectious Disease Society of America. Their stance is that chronic lyme doesn't exist despite proof that it does. Try to get a CD 57 test to support a diagnosis of lyme.
The one infectious disease doc I went to told me my constellation of symptoms were all in my head. He went on to tell me all that was wrong in my life and that this had made me have pain etc. Well, that was 5 minutes into our visit. How could he assess my character with so little info in such a short amount of time???? In fact, I had some awesome stuff going on but I couldn't do everything because I was/am SICK.
Time is of the essence. Please move on before you get sicker.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
thanks for the comments. I am going to be going to a LLMD but my mom wanted me to go to a ID doc first which I agreed to... knowing that the visit might not be what I wanted it to be like.
posted
What a too familiar scenerio..Get to a LLMD - period!
sickpuppy; As a Psychologist, nothing rattles me up more then a non Psychiatrist MD playing Psychologist/Psychiatrist!!!!! You should have asked him where he earned his Ph.D in Psychology or did his Psychiatry Residency...Even those trained in mental health cannot and would never make a MH diagosis in 5 minutes!!! Drives me crazy when un-trained MD's do it. A shame that you needed to be subjected to that...TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Interesting how IgeneX is a crooked lab. Weird how they came up with bands + and a regular lab came up with the same bands plus one extra that IgeneX didn't catch.
Hmmm...IgeneX must be crooks *eye roll* lol
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
"Even those trained in mental health cannot and would never make a MH diagosis in 5 minutes!!! "
Gee, you would have loved the DUCK I saw before I was dx'ed.
He was brand new at the practice I go to, and I got thrown in to him because no other doc was available that day.
Well, he took one look at my charts (had been to the ER twice in a week), didn't even examine me, and told me I was just suffering from anxiety/panic attacks and only needed a good antidepressant and a psychiatrist.
I had to leave before I went postal on him.
Of course, that would have supported his claim...
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I went to a Infect Disease MD here, because he could see me right away (versus the 3 months of waiting for LLMD).
He mirrored what yours said-that IgeneX is a quack lab, and that i shouldnt research anything on the internet in regards to Lyme. RIDICULOUS!
The ID's diagnosis-chronic fatigue syndrome with "interesting neurological syptoms."
He told me to go to the Mayo Clinic. I got into an out of state LLMD's office as quick as possible. Why would we need to go to a top Hospital in the World for Lyme Disease...when they follow IDSA guidelines too?
The whole Infec. Disease profession is crooked. They run things like spinal taps to put $$$ into their clinics. Ignorance is high amongst these Docs. Be careful about how much weight you put into them!
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
LizaLu (and others) I see two wonderful ID doctors who believe strongly that we are ill, and are doing their very best to find answers and make us better. Trust me, these guys are working their tails off.
One thing that is happening is a website where you or a doctor can go to get good info on the various pathogens that can cause illnesses like we experience. When that is up and running, I will post the info. We hope it will help a lot of people.
Seeing an ID doctor is actually a good place to begin. No, most don't think like the LLMDs but they can begin to test you for all kinds of pathogens and rule in and rule out various infectious agents. Unfortunately, many LLMDs won't run all the viral testing that is becoming apparent that needs to be run. I hope that changes soon....and I think it will.
XXX~ It's good that the ID doctor thought to test you for bartonella, "among other things". Get a copy of those results. See what you were tested for and what you weren't. Consider getting tested for LOTS of pathogens, including coxsackie B and echovirus at ARUP lab. And HHV-6 and EBV at Focus Diagnostics lab. These are very good labs that no ID doctor should have a problem with. If you want to see everything I've been tested for, you can look at this link (you will need to be a member to read it: http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=26
Please don't knock all ID doctors. Some are truly wonderful. Believe me, I've been to my share of awful doctors....and I've written a book that is now at the publishers...and it has a chapter on doctors...the good and the bad ones. So, I know how you feel when you run across a doctor who doesn't understand.
But, there are some ID docs that do understand. Believe me they do. And in a couple of months you'll see the proof.
Best, Timaca
[ 01-09-2010, 12:49 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Bet that doc doesn't even know what lyme specific bands are and that those other labs leave them out.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Timaca, have you met any ID docs who truly believe in Igenex and their superior accuracy? if these high quality ID docs you see believe they are scammers, it's not good as they seem very open minded. I'm just curious.
I had no idea you were writing a book! You must be a real big shot Timaca. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Timaca- Tell us the name of the book when it comes out!
Posts: 797 | From New York | Registered: Feb 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Seekhelp~ I've discussed Igenex just briefly with both ID doctors. They do not use Igenex for their testing. One of them is the director of a lab for a certain infectious disease (which shall remain nameless at this time). So, I know he knows what goes into making a good lab. I have not discussed Igenex in depth with him...maybe I will the next time I see him. I would be interested to know why he doesn't use that lab. I do trust his judgement. He's a smart man.
One thing that you all should remember is that you are looking for the right answer, not any answer. The reason that 5 out of 10 bands are required by the CDC on the IgG WB, is because some bands can cross react with other pathogens and other borrelia. So, if you are claiming you have lyme based on one or two IgG bands, you may really not have lyme. Even if those bands are "lyme specific."
Dr. F at Columbia presented a study that he did (which I heard) at one of the LDA conferences. He sent blood to all labs: Igenex, and some "regular labs" like Quest, Labcorp, etc. He sent blood that he knew was positive for lyme, and blood that he knew was not positive for lyme. And guess what? ALL the labs got the results right. All of them. But, it had to be CDC positive to be correct. Of course, Igenex was flustered by that presentation, and asked to give their side of the story, which they did. I'm sure some of you were there for those talks. At any rate, I'm not knocking or endorsing Igenex. I've sent lots of my blood there, as well as to Focus, ARUP, MDL and SUNY. I'm saying what I always say. Get tested for lots of things and treat the most obviously wrong.
Also, I am not a big shot (and I know you're kidding but just to make sure) ....I'm just someone wanting to share what I've learned in the hopes that it will help others.
All proceeds from the sale of the book will go to various places...lyme, enterovirus, HHV-6, and research and treatment for these pathogens. I will not be keeping any profits. The goal of the book is to help others and raise funds for infection associated CFS. That will all be set up on the website for the book. And yes, I'll let people know when it is available. And if some of you purchase it, and wish the proceeds to go to lyme, it will. There will be ways to let me know that on the book's website.
I'm excited about the book. I do hope it helps others and raises some funds.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I only have one question for that doctor, if Igenex is such a crappy lab, why does Medicare, a government insurance pay them for all testing? In fact they are the only insurance I know of that pays them for testing.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Timaca, yes, I was kidding, but that's great what you're doing. I really respect that. I would be very, very, very interested in your ID doc's opinions on Igenex.
I definitely will get your book.
That amazes me what you said about the lab work being sent to all of them and consistency. I know many on this board probably think I'm an ###HO## for questioning Igenex. I'm just doing a smell test. Nothing comes together for me.
For example, I read today the STARI strain is easy eradicated by Abx. This was from a doc who believes in chronic Lyme and will treat years. That said. one HAS to presume Igenex finds STARI in many people if they show positive while other labs show no bands. Intuitively, it's the best explanation for my sitution. BUT, they do not have a STARI PCR to verify. My Lyme is not being easily eradicated IF I have it though.
I do recall a poster going into specifics on how the WB is very complicated with many steps and precision is required. I can buy into this to a degree, but it should be fully audited by inspectors to confirm.
I just don't care about one 165 person study years ago. Sorry. It's something to factor it, but it's probably 0.05% of all tests done.
What was Igenex's explanation that day Timaca?
I feel Igenex AND other labs has a responsibility to clearly expalin on a patient's test result if other bacteria/viruses make a marker show up. They do with 31,34, but that's it. If they do w/others,then say it. Every band of a WB should show prevalence and specificness of Bb in it based on ALL labs results, not one. The data's flawed. Igenex confirms with Igenex only data.
There may not be a better method right now, but I hope so in the future. My gut tells me there are some very flawed assumptions happening.
Derek, going back to a comment you made earlier. You said maybe healthy people have Lyme and don't know it. Well, the opposite side is maybe us 'sick' patients are fooling ourselves thinking Lyme is the problem and maybe 5-6 other issues are. We can only do our best to attack what's obvious as Timaca says, but it sets the stage for some big guesses and expensive ones. I'm at the point where I have to say who cares and try as many of us.
I guess I just wish the CDC/IDSA would step up to the plate and help. I hate having to tell people I send my blood to a tiny lab in CA.
Now reading that other posters comments about how the top LLMDs in the country admit no one is cured after 5-10 years really has me thinking. It's a tough mental battle.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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