posted
Hi, I got back lab tests from Igenix that showed my western blot igm was positive. i went to Dr. I today, and he said that based on my symptom...which is primarily Muscle Aches for the last 7 months (after a flu) ... he doesn't think this symptom is enough for a lyme diagnosis. Does anyone on this board have just muscle aches as the only sympom of LYME??
I am scared he may be missing something, and just saying I don;t have lyme, I am PRegnant Now and I dont want to miss lyme if I have it, and why was my western blot Positive if I dont have it???? ANy help please....
[ 15. August 2008, 10:46 PM: Message edited by: moongirl ]
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
I think this doctor is a lyme specialist, He is dr. I in Long island, Does anyone here think muscle aches in my arms legs, for the past 7 months could be lyme, he said he felt he cant make difinite diagnosis on that alone, he said he doesnt think it's lyme, but like I said the western blot is p0sitive...i am so confused??
[ 15. August 2008, 10:47 PM: Message edited by: moongirl ]
Posts: 21 | From queens, new york | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It sounds like Lyme to me; I would see another LLMD soon! Even if this doctor is supposedly an LLMD, you need a different one, because yours is showing EXTREMELY poor judgment and negligence during this crucial time.
You need to protect the baby. If the baby does end up having Lyme, hopefully it will be easy to treat, but you want to prevent that scenario if at all possible. You cannot prevent it without antibiotics. You need to seek out professional help!
Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Please do not post doctor's names on the site.
You could still have Lyme Disease. Do you know if this particular doctor is an ILADS doctor?
It is of critical importance that you find out for certain whether you have Lyme disease AND/OR COINFECTIONS because you are pregnant.
I would go to the "seeking a doctor" forum ont his site and ask for other doctors.
I doubt very seriously that your doctor is a genuine ILADS doctor considering that you came to him for unexplained pain and received a postive Western blot. This is a really, really big deal since you are pregnant.
Muscle pain alone could still be Lyme disease. I had pain only as a symptom for approximately 1 year (maybe 2) before other symptoms arose.
Posts: 129 | From Virginia | Registered: Feb 2008
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bettyg
Unregistered
posted
yes, DRS. LAST NAMES ARE NOT PERMITTED; correct to LAST NAME INITIAL ONLY **********************************
click PENCIL, 3rd box to right of your name in the 2 posts you have here showing LAST NAMES USED BY YOU.
delete last name; you can leave LAST NAME INITIAL ONLY! click edit send when done
then edit 2nd post where you show drs. last name.
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bettyg
Unregistered
posted
moongirl,
i see you do NOT follow any instructions!!
i asked you early this am to delete the 4 other IDENTICAL POSTS you started yesterday, and you have NOT done this.
so i'm done helping you; you want help but you will NOT listen !!
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posted
hokie, how do i know if a doctor is an ilds doctor, i was told this doctor knows about lyme, but i am very concerned becasue of the Positive Western blot.... the pain you had ...was it muscle pain????????
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
I dont know how to take off those other posts...i am not that computer savy...
Posts: 21 | From queens, new york | Registered: Jul 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Moongirl, if your Igenex Western Blot was positive then you have Lyme. The doctor you are seeing may "know" about Lyme, but not enough to adequately treat you and protect your baby.
You need to find a true LLMD and make an appointment ASAP. You can protect your baby during pregnancy if you are following the correct treatment protocol.
To delete your duplicate posts go back to the ones you want to delete. Open them and click on the pen and pencil icon at the top of the post, under the title. You will get an option to delete the post. Click delete then.
I can understand that all this must be overwhelming to you, especially as you are pregnant and learning about Lyme. Feel free to PM me for more guidance, if you don't understand any of this.
To send a PM just click on the letter icon at the top of MY post to you and it wil open a new window. Then you can type a message that will be sent to me.
Take a deep breath and you will be fine!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
you got a lot of replies at your posts from yesterday.
did you read those yet? Good information there and some answers to your questions.
and you had some replies from your July 7 post in "seeking doctor"
did you read those - and the PM's that people sent you ? ILADS doctors' names were sent to you. I hope you got that.
--
How to delete a post:
just to the upper right of a post is an icon of an empty page.
Click on that to edit.
then, click on the "delete" box to the left of the edit page.
then, click on the "add reply" to the lower left border of the edit page.
Hi I just got back test results from Igenix, my regular md said based on the results that i don't have lyme.
SOme bands are positive, and I just wanted to know does this mean I do, or don't have LYme, I just found out Im pregnant, and don't want to worry about Lyme.... the following are the results :
WEstern blot IGM all bands Neg except 31 +
34 IND 41 +
WEstern blot IGg all negative except
31 IND 39 IND 41 ++
I also had some serum test neg
============ ============
Again, some of the answers at that post may help shine some light for you.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Keebler,
You are kind, gentle and caring.
Moongirl, lots of good information here, it takes a little time to get used to the website.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Moongirl.. Don't worry about deleting the other posts. We WERE concerned you were not reading them, however.
So good to see you back here today. Anytime you want to bring up a post, just REPLY to it and it will come back up.
You need to learn how to edit so you can delete the name of the dr. You can also delete a post by clicking on the "delete" box while in the edit function.
The edit function is accessed by clicking on the pencil/pad icon next to the date.
+++++++++++++
At any rate... back to your issue. This dr is NOT on my LLMD list and I therefore [at this point] would NOT consider him to be Lyme literate.
He sure doesn't seem to be LL if he is ignoring a positive IgM blood test!!!
And he is ignoring the health of your unborn child!!
PS.. My worst symptom was muscle pain. I had plenty of fatigue also, but I would think there are those who have only the muscle pain too. Lyme causes different symptoms in each of us.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dawnee
Unregistered
posted
Aw, lets not jump so hard on the newbie!
Moongirl... need to click on the paper thingy above the post that will say "edit post" and delete the Dr. name and only put his last initial and the State he is in.
It's to protect our LLMD's
I think you need to see an ILADS LLMD hun. Doesn't sound like yours is taking your results or symptoms seriously.
posted
Hi thanks to everyone for your responses, I was able to delete the docs name. Anyway, I am so upset.... I really don't want to deal with this now when I'm pregnant..... All these Lymedocs are so expensive too, I paid hundreds today, Hundreds for the igenix test, and the doc today just dismissed it, and didnt even pay attention to the positive western blot. He said only muscle aches not enough..then why do i have positive test?? Does anyone know can this be a false positive maybe...?? Maybe muslce aches are not enough?? I want to put this all off until after my pregnancy..it is stressing me out to much, and that is not good for the baby, so many people go years without diagnosis right..then maybe I can wait till after the baby, i am so scared and upset, is the only way to treat this with IV antibiotics..that scares me alot...especially when pregnant....
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
I would find an LLMD. I have 2 sons and I didn't know I had Lyme when I had them. Both kids have suffered from Lyme most of their lives. They are now 17 & 22.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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The Dr. I you went to is not a LLMD per se, but more of a cross over between an infectious disease doctor/general practitioner who just does happen to (thankfully) believe in Chronic Lyme disease. The last time I saw him he currently had only 3 Lyme patients in his whole practice---Lyme doctors generally have 50-100% of their practice consisting of Lyme patients.
There is another doctor on Long Island who is more knowledgeable, there is a doctor in Staten Island, there are 2 in Westchester who are both wonderful (only 40 mins. from Queens), There are MANY in NYC....Message me, I'll give you the names I know of...Please do not let this go unchecked. If a real solid LLMD says you don't need treatment, fine. I think your unborn child deserves the best medical attention possible, don't you?
God bless!
Posts: 371 | From CT | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I doubt it is a false positive because you have the muscle weakness!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hi, I donrt know how to message you, can you please message me with the docs names that you know of in long island,weschester, and nyc, I will see if any take my insurance,or if i can afford to go to one, i am really very concerned becasue of the positive western blot, and i see some docs consdier IND as positive, and I had that on some important bands...thank you...
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
Hi I just went to get my blood drawn at a local quest lab, lyme screen ,and Western blot igg and igm .....I am going to wait on these results....i am reallt DRiving myself Crazy,,,, and I am so scared if i do have LYme, can oral antibiotics get rid of it... It seems all the lyme stories I read are horror stories, of people on antibiotics for years at a time ...and are still sick. Has anyone here been cured with oral antibiotics, and I am very scared to take any medicine bieng pregnant....... thanks
Posts: 21 | From queens, new york | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Moongirl,
You can PM someone by clinking on their name. And, your PMs have probably caught your eye by now as a little icon will flash on your screen.
While I hope they do shed some light, I'm a bit concerned about the tests. You just went TODAY to get your blood drawn? Where will that be sitting for the next two days? Sometimes, that can make a huge difference. You will need to know.
Did they keep in the fridge - or go ahead and ship it out - and will it stay cool until the lab receives it?
Will they test for all the bands ? They think they do, but most labs do not.
-
In previous posts there was a lot of information about the specifics of testing, the timing, the labs, etc.
Tests are not that helpful at this point. the Savely article (from your previous thread explains why.
And, with the blood being drawn on a Saturday, it's not going to Igenex. I don't know about Quest's record, but if it is not handled correctly - and all the bands are not tested (which I am not sure any lab but Igenex will do) . . . then the tests are compromised.
If they come back negative, that still means very little with your symptoms. And, testing for co-infections is essential. That is an evaluation, first, by a LLMD.
You say the treatment scares you, but let me tell you what is scary: getting no treatment. Seriously.
You say we all scare you. Yes. I understand. It scares me, too. That happens because we know the horror of what no treatment - or too little treatment can do.
And, you see some of us struggle because, for the most part, we are on our own to figure out what to do and how to obtain and afford treatment.
Many here did not get treatment in time. Many here have never had the chance to see a LLMD. Many states don't even have one. You have several excellent ones.
Fear must not paralyze you but, rather, give you direction and focus - after taking a few deep, slow breaths.
You have no idea what TBD disease can do to you or an unborn baby.
With treatment, while still not a walk in the park, you will have a chance to walk in the park and play with your child.
We are not trying to talk you into having this, but you came here with symptoms and exposure and ask from experience.
--
Experience says the tests are not enough and that most labs do not do them correctly.
Experience says, especially if treated early, success is possible.
Experience says, get an EXPERT opinion of a doctor who has seen THOUSANDS of cases.
Experience shows that babies born with lyme/TBD are at a huge risk for developing heart and neurological problems. Treatment of a baby born with any TBD is hard. Not treating will result in an even harder life for the child.
All the experience says, if TBD's are present, it's vital to treat now.
--
As mentioned in a previous post, if the LLMD says TBD seems unlikely, fine. Great. They could probably then also help you figure out "what, then?" this might be.
But you need someone who has seen all of this before. It's too complex - and too dangerous - to just say it's overwhelming.
We are here to help with that part. So is your local support group. So are the books and articles. One step at a time, forward, we hope.
Please.
========================
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
-
[ 16. August 2008, 12:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
thank you for your reply, The tests i got done today are a lyme screen and wb igm and igg to confirm /deny what I already recieved from Igenix. they will be done at quest labs, i got the blood drawn right at the lab. I did have 2 co infection tests at igenix for Babesia Microti and Human Ehrlichiosis these 2 coinfection tests were negative. I know that My western blot blood showed up positive at Igenix, and it's really concerning me, I went to the doc yesterday paid a crazy amount of money and he saw the igenix test...but it looked like he was unfamiliar reading it..he saw the star band and thought those were all positive, I had to tell him they were just stars!!!!!! Yet he claims to be a lyme specialist,,,,, it is very confusing ,and he told me he used igenix and mdl..but it seemed from the way he was first looking at the report that he didn't know.... I really cant afford to keep going to all these docs.they charge Sooooo much, there is a doc in NY city that I heard was great ...but 900 for the first visit... , and it seems IV antibiotics are his treatment of choice,,,,,scary....I appreciate all your help
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
Hi, i am afraid i would already be in the long haul, becasue i think i got exposed to the tick last august...so it's already been one year,if i have lyme it's been in my system that long already......
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
When i look at the explanation of the Western blot by doctor c posted on this site, it says clearly that my results are positive for lyme, why did the doc yesterday shrug off those resluts??????? it is so confusing!!!!!!!!
Posts: 21 | From queens, new york | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If it's been in your system for a year, that is still time to treat. Some people don't get treated for years - or ever. It's best to treat before symptoms become severe but, even then, treatment has helped many.
Go back over the SAVELY article and it will be clearer. It's political. It's not about medicine or patient safety, it's political.
By now, after reading all of the articles (especially SAVELY's) you can see that the IDSA doctors have very different ideas than the ILADS doctors.
You can see the research of the ILADS doctors, you can read their books, etc. Based on the available science, the IDSA doctors are sorely undereducated and their treatment plan is criminally negligent.
Are there concerns with treatment? Sure. But the IDSA doctors seem to have never heard of milk thistle or other ways to help protect the liver. If guided by a LLMD, and if self-care is excellent and certain complementary measures are taken, you have a chance.
The IDSA seems to have never learned of the destruction of a spirochete - or the various cycles and forms. The seem to not know that lyme and TBD can be fatal if not treated thoroughly.
Sure, we'd all like an easier treatment - and that may be on the horizon soon with some unique ideas - but for now, we must move forward and address the matters before us in the best ways we know.
--
For much more detail, get a copy of the DVD: UNDER OUR SKIN.
posted
Haven't been on LymeNet much this week, so I haven't read everything in your posts. Hope I'm not repeating too much.
You've received good information and excellent advice about your situation. I understand how overwhelming this can be, but you can do it, I'm sure.
Listen to those who have dealt with Lyme for a long time - both Drs and patients. They understand how complex the disease is.
Never postpone treatment - especially when pregnant. The longer you wait, the more difficult it becomes. Most of us did not get diagnosed for a looong time - decades for many people. That's why you've read about difficult cases.
[I had bull's eye rash, but NO symptoms developed for 10-15 years. Did not get diagnosis for another 5 years, so I've been on and off treatment for a long time.]
I'm no Dr, but since you only have one symptom that is bothering you, I would recommend that you NOT expect treatment to be that bad. Also, I believe that a positive attitude helps a person heal.
Those who understand Lyme know that NO TEST should be used to "rule-out" Lyme disease. Don't assume that ALL lab tests are reliable. A lab specializing in Tick-Borne Diseases will be the most reliable of all (ex: IGeneX)
My advice is to look at all the positive things you have going for you!!
1. It's possible that you've only had this about a year. 2. You had LD test done by a top lab. 3. Your test results - positive. (some people never test positive) 4. You are close to excellent LLMDs. (We're in South Carolina. My grandson goes to CT and I go to NYC for treatment) 5. LymeNet is a great source of reliable information and wonderful support. 6. You know what you have, so you can proceed with the necessary treatment - for you and your baby. Others don't realize they have Lyme and sadly they can pass it on to their child.
As for finances - Lots of people find it difficult affording a LLMD if insurance won't pay. Do everything in your power to see the best LLMD. If you don't get adequate treatment now, you will end up paying much more for medical care in the future.
Please don't waste more time and money on further Lyme testing or seeing doctors who are not experienced in treating Lyme. You need a Lyme Dr who has lots of "satisfied customers" I believe you've been given some names.
When is your baby due? Have you discussed Lyme with your Doctor?
When I was diagnosed with breast cancer in 2000, I didn't know what I'd do. I decided that since this was something I had to face, I needed to learn all I could. I talked with others who had been through it and they helped me make the decisions.
Lyme disease is so similar. Learn all you can, especially from those who have experienced it. Then face the problem with a positive attitude. Keep in touch. We care!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
To put things in perspective, many of us went untreated for DECADES before being dx'd, so a year is nothing in comparison. You can expect much quicker response than that group of us, to which I belong.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by moongirl: When i look at the explanation of the Western blot by doctor c posted on this site, it says clearly that my results are positive for lyme, why did the doc yesterday shrug off those resluts??????? it is so confusing!!!!!!!! [/qb]
Because, as someone told you, he's not a REAL Lyme specialist... only a wannabe.
Now... back to the issue of the child....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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