posted
My husband and I saw the new LLMD today and just as I suspected, it's like starting all over again.
His biggest concern (and I guess it's appropriate) right now is the blood clot that landed my dh in the hospital last week. The coumadin levels are still not therapeutic and so he's focusing on getting that taken care of.
But he's also doing testing all over again . . . at Quest. (ugh) He works with insurance companies so he follows their rules and I just feel so discouraged that there is no way we'll get positive tests from them.
He also sounds like he believes you can have permanent damage from lyme and still be symptomatic and not have a current ongoing infection.
He also said that 90% of babesia is taken care of by the body with no treatment at all but he treats because you never know if you might be in the unlucky 10% that need it.
He wants my husband to see an orthopedic doctor for his back pain and nerve problems in his legs. I'm guessing it's to rule out that as the cause.
But we went for years and years (16 total) to doctors to rule out other causes.
I really am feeling discouraged. This is a LLMD who is a member of ILADS. But he's not willing to say that my husband has lyme or any other TBD currently at this time.
My husband in the past tested positive at MDL labs using the PCR for bart and positive at Quest for erhlichia and babesia. He's never had a positive lyme anywhere . . . not at Quest, not at MDL and not even at IgeneX.
I don't know how to feel right now. I'm numb and sad and confused.
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry for all your troubles. I can understand why the top concern is the blood clot. As far as a lyme diagnosis, it's good that he's cautious but...
It's probably not good enough that he is a member of ILADS if he does not follow their guidelines.
"When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot�) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management."
I may be mistaken but I'm pretty sure that quest does not report on all the bands.
I would not feel comfortable that he follows insurance company rules since that typically means IDSA rules. Whatever is the cheapest for the insurance company. Also, I hadn't heard that insurance companies dictate that one must be diagnosed using quest labs but I suppose some probably do.
I would wonder about his status as an LLMD. Is he new to ILADS? Perhaps he is just learning about lyme?? If so, maybe you can help to educate him or insist that he check with ILAD's about appropriate labs.
If it were me I might give him another visit at which time I would bring up the ILADS info and ask him if he follows their guidelines.
I know it's a lot of trouble but if he doesn't work out, keep looking. There are others out there who know what they are doing. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Actually he's been around for a long time. I've been sent some messages from other boards with people concerned that they felt that they were inadequately treated by this doctor.
The only test he really considers helpful is the PCR. He said it's definitive when it comes to the co-infections so that if you get a negative, you don't have the disease.
He said it's not quite as definitive for lyme disease and there are other ways to diagnose.
His attitude towards other LLMD's was less than complimentary as well.
Since he takes our insurance, we're gonna probably stick with him until it becomes apparent that he won't treat aggressively enough. At least it won't cost us a small fortune.
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I guess we can't rely on membership in ILADS to substantiate the status of a doctor.
I wouldn't consider him an LLMD if he doesn't subscribe to even the basic testing guidelines since that is one of the big area's of difference between our LLMD's and ducks.
For your sake, I hope it works out. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
If you're not satisfied, get a 2nd opinion.
My 1st LLMD said Babs doesn't become chronic would't treat me for Babs even though I had all the clin sxs.
I switched, was treated & made significant progress. 2nd LLMD said testing for co-infects is also unreliable.
It's your life & body and we're not getting any younger.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Im in your area, and im pretty sure i saw the dr you are talking about.
PM me if you want to compare notes.
I was told the same thing about babesia.....and post lyme syndrome.
i left the office discouraged as well.
hang in there. Are you able to travel, there are a few good dr in NJ.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
hi there, as a newbie i guess i'm a bit confused by your post....if your husband never tested positive for lyme why do you think he has it? i realize your seeing a llmd but it sounds like your looking for a positive lyme since there has been no other official diagnosis?
i'm new to this site and definately ignorant but when i see a post like this i like to respond because i do not want to spend 16 years not kowing what is wrong with me. i don't know if you know what i mean but since cyperspace has so much information when i see people post that they're negative but pursue lyme i am curious as to why i guess.
sorry if this post sounds crabby, i don't mean to be, i'm currently trying to figure out if what's wrong with me is lyme or not so i'm posting more out of curiosity. i know their are many people suffering from chronic lyme but i am realistic to know that not "all" posters have lyme
sorry if i'm being pessimitic i guess i'm just confused.
karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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posted
hi there, as a newbie i guess i'm a bit confused by your post....if your husband never tested positive for lyme why do you think he has it? i realize your seeing a llmd but it sounds like your looking for a positive lyme since there has been no other official diagnosis?
i'm new to this site and definately ignorant but when i see a post like this i like to respond because i do not want to spend 16 years not kowing what is wrong with me. i don't know if you know what i mean but since cyperspace has so much information when i see people post that they're negative but pursue lyme i am curious as to why i guess.
sorry if this post sounds crabby, i don't mean to be, i'm currently trying to figure out if what's wrong with me is lyme or not so i'm posting more out of curiosity. i know their are many people suffering from chronic lyme but i am realistic to know that not "all" posters have lyme
sorry if i'm being pessimitic i guess i'm just confused.
karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, fpn, and welcome to Lymenet.
A quick response to your puzzlement: Lyme can suppress the immune system. Since the ELISA and Western Blot blood tests check for immune system response, it is quite possible to have negative blood tests, but still have Lyme disease.
That's why many Lyme-literate doctors (LLMDs) will treat based on symptoms, ruling out other diseases based on additional tests and patient history.
Even the Centers for Disease Control (CDC), which uses positive blood tests for its Lyme statistics, has stated that a negative blood test should not rule out Lyme disease.
Hope that helps you, Shaz
(tested CDC positive on Elisa and Western Blot through Quest, by the way....)
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Of patients with acute culture-proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For ``epidemiological purposes'' the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.
Posts: 6286 | From Oregon | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Dancer
I am sorry and can identify with your frustration.
If it where me I would look for another LLMD. This one sound questionable on many levels.
I agree with Shazdancer. LLMDs treat on symptoms,ruling out other diseases based on addtional tests. The CDC does state that a neg test should not rule out lyme disease.
Here is a link. How you can still have lyme and test negative:
posted
There are several reasons we believe my dh has lyme.
19 years ago when he first became ill, my son who was 2 at the time did also (and my sister). We'd been at an Easter egg hunt and they'd been looking through the ivy.
All three became sick within a few days with similar symptoms: muscles hurting and swollen joints, fatigue, malaise . . . we thought it might be a flu.
But then we found a bullseye rash on my son. His pediatrician said it couldn't be lyme. It was too large. Not knowing anything about lyme at the time, we believed him.
As my son got worse and worse, my husband saw another doctor and was diagnosed with Fifth's disease and treated with antibiotic. He became well. (or so we thought)
Son eventually saw another doctor who tested him for lyme, he came back CDC positive and was treated for 2 weeks with IV antibiotic and has been great ever since.
Hubby was fine for about 7 years and then began his journey in hell . . . from one doctor to another.
It was just last year that he was diagnosed with chronic lyme and we found a good doctor. We had HOPE of recovery. We knew it'd be a long journey but were up for the trek.
Then his doctor was in a major car accident and his office closed.
And here we are . . . I feel my hope has been stolen from me.
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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posted
I hate to give you the bad news but it seems to me that you are wasting your time and somebody's money. Maybe the insurance company's, maber yours. I would be looking around to see if I could find somebody else. It sounds to me like you are about to be taken for yet another ride. Good Luck. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I think I know who you may have seen. If you could PM me, I bet we could also compare notes.
I would definately move onto another LLMD.
For firepipernurse ( if thats the name, I forget already): there are TONS of different species of borellia and testing only shows three. You can be negative simply just because its not there to be found THAT day.
I think several posters have told you this in the past as well.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear "Danser",
Could you send me a private message telling me the name of this doctor. I am seeking a new doctor and don't want to run into this guy you are talking about. I already tried a guy in Alabama that says he is lyme literate, but would not treat until symptoms are gone. I don't want to go through that with my family again. All five of us have lyme.
Thanks and best of luck with the treatment. My advice about this doctor you saw is to run away as fast as you can.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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I have the Babesia that is hard to get rid of. It went misdiagnosed for a long time. Now it is showing up in Igenex FSH and IGM tests, and even Quest tests. Dr. B on Long ISland has been treating me for it for OVER a year. I had a bad relapse when I went off the malaria meds. Babesia is very dangerous and needs to be treated aggressively.
My best advice for you is to run away from that doctor and find another. He is wasting your time even if he works with your insurance. Have another Igenex WB done on your husband. My first one didn't show much last year even though I knew I had lyme from a urine PCR test and a stomach tissue sample. Finally, as I am starting to get better my last Igenex WB in the SPring had lots of bands and I was CDC positive finally. My body is finally making antibodies and recognizing the lyme is foreign.
I hope everything works out for you. I think we all have to perservere and not be satisfied until we find a doctor that truly will work for you.
Could you please PM me and let me know who that doc is so I stay far away? I'm in PA also!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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