Topic: need advice about LLMD appointment yesterday
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i went to see dr st in howell, NJ...a few people from this site recommended him. Im concearned today after giving it some thought......he did not give me an abx....and i have to wait until dec 3 for the test results....meanwhile my symptoms could get worse. when i asked about an abx he said he couldnt give me one right now because if i had a coinfection and he treated the lyme only it would not work.
Is this normal?
-------------------- "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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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Hmm....I dunno about this. I know that it's best not to take meds we definitely don't need, but I will say that at my treatment center (doc is well-known LLMD), diagnosis is based on symptoms, even though tests are run. If there's suspicion of a co-infection, they will treat. They use combos to attack everything, often from more than one angle.
Even co-infection tests are inaccurate. For instance, there are many strains of Babesia, but we can only test for two, I think. And in the East, it's B.Microti. What if you have B.Whatevertheheck? I have tested positive for Bart years ago, and I never received appropriate treatment. Now, my PCR is negative, even though I still have it. Antibody tests are fine if you are making antibodies; we don't all make them, at least not anymore. And they'll be negative if the bite was quite recent. PCRs are reliable if you get a positive; if you get a negative, there might not have been any DNA in the sample. Doesn't mean it isn't there somewhere, though. Confusing, huh?
If you want more information about my treatment group, I'll give it to you. [email protected]. I think we are in roughly the same area. Also, Dr. E in Jackson, NJ, is well respected. I once saw her, but I left for reasons unrelated to her acumen.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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posted
i can relate to your situation. I saw my lyme doc (one that came highly reccommended and really expensive) and she said she thought i had lyme but that she'd see me in 6 weeks. Well I didn't see her till early may because that was the earliest apt i could get. She got my results back and started treating me for mono and shingles and then a month later starting treating me for lyme with a very low dose of mino 200mg-five monthes later she put me on flaygl and i also have possible co-infections. My results were neither pos or neg so i probably have them. She explained to me in my last visit that this is a marathon not a track meet. According to her blood work from igenex is her basis for how she treats me and what meds she choses to use. I will say that I feel a lot better since starting treatment! Just be patient-be happy that u don't have to swallow an extra X amount of pills a day!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks smiles...
i will remember that..."it is a marathon not a track meet" i just wanted to make sure ths was normal.....thanks for sharing your story!
-------------------- "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
My LLMD put me on meds based on my symptoms right away. He uses labs but does NOT base treatment solely on them. He wanted me off all meds for 2 weeks (i was on from previous non-llmd) before drawing blood but as soon as the blood was drawn he prescribed 2 different ABX. Pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Glad that you got to see an LLMD, Can't! Out of curiousity, where in the world did he send your tests that takes till December to get results back?? YIKES! IGenex takes 10-15 days. Maybe one of the other good labs like MDL or Bowen, perhaps, takes longer...?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
well, i was set back 4 days already because i missed the igenex pickup...so they will pickup on monday. So 15 days from monday is the 29th :-( they did say they "might" be in thanksgiving weekend. But they also mentioned because of the holiday it may bump me back a week as well. MDL and the rest of the labs will be in sooner, but LLMD likes to wait until he has all test results....
-------------------- "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
So the blood will be sitting around for about 5 days before it is shipped out? That's not good at all. The blood should be drawn early in the week so it will not sit around over the weekend. It could skew the results.
Things don't sound right with your experience, but I hate to criticize a dr who is apparently willing to treat long term. It sounds like he's just very cautious.
here is info on the WB .. it explains things you will be interested in.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i know...i scheduled the appointment on wed because i thought it would be shipped that day....im starting to not feel so good about all of this....they said it is in the fridge but still that is a long time for blood to just sit. Also why dont these offices make you aware of the blood shipment cutoffs....
Im just not sure why so many recomended him? I will check out the link. It seems this just might be one more frustrating thing to add to my ever growing list.
thanks
-------------------- "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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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am his patient as well,and that is exactly how I was treated. He is not going to prescribe antibiotics without having a better idea of what you're infected with. You might have co-infections. You will no doubt be on a regular schedule after your second visit of monthly visits for reassessment of your condition and blood work.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I would be uncomfortable with the amount of time the blood will sit around...this may cause clumping of the anti-bodies, making it harder to find them...rather than allowing them to be equally dispersed.(and easier to find)
Otherwis...I see the rest as a doctor with a plan.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Our llmd started with abx for lyme and then after a couple of months treated co-infections.
My llmd in SE Pa is taking patients again. PM me if you would like his info.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks, I just sent you a PM. I guess i should have asked if he would treat me if i had a negative result..
its so tough.....
-------------------- "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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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I'm so confused, not about what you said, but about what some are saying.
People are always saying, "It's a clinical diagnosis." And the tests are inaccurate. They can be a guide, but to base treatment solely on the results is absurd.
It's what kept me from getting some much-needed treatment at times.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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posted
I just got off of the phone with Igenex looking for my son's results and they stated that the delay would not change the results.
I sure hope they are right because the same doctor drew my son's blood on the 3rd of November and Igenex didn't receive it until the 10th. Needless to say I'm not to happy about a weeks delay. This is also my doctor and I was very happy until this.
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
thanks for the post, i was just wondering today how your son was making out. The delay doesnt make sense to me though. I thought the blood was shipped overnite... since the 3rd was a thursday you did miss the ship date...since they only ship on a mon, tues or wed. but i think the blood should have arrived on the 8th at the latest. I also think they should only schedule blood draws closer to the ship dates...like Friday, sat, mon tues draws...and very early wed.
I hope igenex is right, because my blood sat a day longer then your sons did.
Im going to call igenex and see if they received it..it was supposed to go out Monday.
thanks for the update
-------------------- "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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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
IMHO - if I was told I had to wait until test results were back, and I had to wait over 3 weeks for the results, I'd be flipping pissed. You're right - it does seem to go against a clinical dianosis. I can't believe he would be treating solely based on test results. Sorry, but coinfection testing is even worse than Lyme testing.
If you continue to be unsatisfied, there is an awesome LLMD very close to Dr. S. She put me back together (and I was mailed my IgeneX results in about 10 days).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I just called MDL they recvd my lab on the 10th (day after my appointment which is good)..its in the lab right now still being worked on..not faxed yet....I hate that this takes so long.
igenex hasnt received it as of right now but i was told to check back later today to see if it was logged. Then it will take another 7 days for processing. They said it was ok as long as the specimen was refrigerated because they keep it for 2 months that way.
I can only hope for the best at this point.
-------------------- "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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I had seen dr S in howell,NJ and waiting for blood results. He did not give any abx and he said lets wait until the results. can you share exp with him? How are you feeling now? I don't have lot of symptoms. He said may be 1-2 months of abx should cure me. ARe you still seeing him?
I just began seeing Dr. S in New Jersey. Any updates from his current patients in this thread. I have heard very good things about him... also sounds like he is waiting for results to treat possible co-infections first.
I am scared, and also have to wait 3 weeks, but heck, after being sick so long, what is another 3 weeks.
If you do not want to post the detailed info here... you may email me @ [email protected]
Thanks so much.. and cannot wait for my recovery to begin... he seemed like a very good, but cautious doc, but have only met with him once.
Thanks for any update. He also seemed very confident about my treatment, and recovery.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
It takes a few months for him to track how you are doing.
I'm pretty sure he just treats you for all coinfections eventually.
My husband and I love him. He is money well spent. I'm sure I would be much sicker if I had not decided to go to him.
I almost stuck with my "insurance" Doctor. So glad I didn't.
Keep us update and your test results and treatment plan.
How long have you been sick? What are your symptoms?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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liz28
Unregistered
posted
It's a little unusual, but at least you know he'll treat the co-infections. You can also take artemisinin supplements if you have babesia symptoms.
If you are taking doxycycline for acne, or for any travel you have planned abroad, you may be pleasantly surprised to learn it can help with both Lyme and babesia, keeping them from going too out of control. It is a very safe medication, except that it will increase your skin's susceptibility to UVA/UVB burning.
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