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» LymeNet Flash » Questions and Discussion » Medical Questions » Went to ID dr today, said I may have West Nile

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Author Topic: Went to ID dr today, said I may have West Nile
JunkYardWily
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went to an ID dr today to make sure im not missing anything.

she told me that she thought i may have west nile virus. also told me that the 3 positive bands on my western blot were the same 3 positive she always sees and that it could be antibodies for bacteria in my mouth.

i stil believe i have lyme. i figure why not look to make sure nothing else is going on. ive been so sick this week and ive stopped my abx for a few days hopeing for some relief to no avail.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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canefan17
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ID docs suck and so do blood tests

You have lyme and co and a whole bunch of crap.

See an LLMD and treat treat treat

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Lymetoo
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quote:
Originally posted by JunkYardWily:
[QB] went to an ID dr today to make sure im not missing anything.

she told me that she thought i may have west nile virus. also told me that the 3 positive bands on my western blot were the same 3 positive she always sees and that it could be antibodies for bacteria in my mouth.


I'm glad you went, but what she said is SO typical and LAME. ID drs will deny Lyme to their graves.

If you have no problem with your gums, then band 41 means lyme, not gum disease.

Sorry you're feeling so poorly. Probably herxing badly!

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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the flim-flam man
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I went to an ID doctor. In 2005 I had a positive test and documented clinical symptoms. He said I have Lyme. This past December, I tested negative. With the same clinical symptoms (now worse and a few new ones) and a negative test, he says I don't have Lyme. I gave him a list of my symptoms which I thought may be associated with Lyme. He never examined me for them. He simply put them in a folder and declared the appointment over. Don't put your faith in ID "specialists".
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IckyTicky
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Interesting. I tested positive for Lyme and Mycoplasma. With antibodies to RMSF and West Nile.

--------------------
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.

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psr1
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My Neurologist also tested me for West Nile: I live in a Lyme endemic area but he thought that WN was a more likely possibility...really dumb
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canefan17
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They're all one and the same.

I gave up tryin to pin point what I have.

Just treat it all.

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JunkYardWily
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i stopped abx on friday and stil my symptoms are so bad makeing me think its not a herx. i just figured extra set of eyes couldnt hurt.

i am currently going to a llmd and believe i have lyme.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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Lymetoo
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Well, you COULD have both.

Hope you feel better soon, my friend!

--------------------
--Lymetutu--
Opinions, not medical advice!

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JunkYardWily
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quote:
Originally posted by ChuckG:
[Were the three bands 31, 34 or 39 and 41? IgG or IgM? [/QB]

off the top of my head i think it was 41 23-25 and something else...

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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Lymetoo
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Chuck, I thought 41 was the mouth thing. I think it had a different name than what you posted though.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Junk Yard... Make sure you read Dr C's WB explanation..... Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077


This was posted under the WB explanation:

The "source" was attributed to Lymenet member "Sammi." Not sure where she got it.

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients


PS from Dr C .. 83-93 is the DNA of the Bb.

--------------------
--Lymetutu--
Opinions, not medical advice!

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cheezhead
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quote:
Originally posted by JunkYardWily:
i stopped abx on friday and stil my symptoms are so bad makeing me think its not a herx. i just figured extra set of eyes couldnt hurt.

i am currently going to a llmd and believe i have lyme.

When do you see your LLMD again? Has he diagnosed you with Lyme or other co-infections? What ABX are you takng? how much?

Hope you feel better soon

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JunkYardWily
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thanks for all the help...

i am supposed to see my llmd again in march. i just finished up 500mg zithro a day. supposed to start flygal when im not feeling sick (my dr believes that herxes slow down your recovery and bad ones should be avoided not "faught through")

the reason i am going to ID dr is because i dont want to be like them and rule out any chance that something else could be going on. having tunnel vision on both sides of the arguement seems stupid and counterproductive

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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sutherngrl
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Find a LLMD that doesn't have tunnel vision! A good LLMD should consider "everything".

Also LD is a "clinical diagnosis", proving the stupidity of your ID doctor. The test are used to back up the clinical diagnosis, that ID docs are obviously too stupid to make.

3 bands is pretty strong if you ask me. 2 out of 3 positive IGM bands should equal a CDC positive.

It doesn't matter if 41 is the mouth thing or not. If you don't have an issue in your mouth, but do have symptoms of LD, then 41 represents LD.

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LightAtTheEnd
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Good luck, Willy.

At first I thought there had to be 2 sides to this question. Surely nearly the entire medical profession could not be completely wrong about this.

But they are. Have you read Cure Unknown?

ID docs will not give you an objective evaluation of your symptoms and then try to figure out what you have.

They will run through a list of the things they usually diagnose people with, and tell you whether or not you have any of them. Lyme is not on that list.

If they ever diagnose Lyme at all, they give you short term antibiotics and then undiagnose it a month later.

They somehow try to tell people that they are simultaneously completely cured, and that they never had it in the first place. Not sure how they can cure you of what they think you don't have.

The fact that they have ruled out Lyme before you get to their office means they will try to label you with something else that you probably don't have.

Or they might say, "I don't know," but don't hold your breath for that, haha.

This doesn't mean you couldn't possibly have something else--you could, but an ID doctor is not going to help you figure that out.

LLMD's are much better at teasing out the complications of multiple problems people have along with or instead of Lyme--other bacteria, viruses, autoimmune issues, heavy metals, allergies, etc.

They actually have followed Lyme patients over the long term, rather than sent them home after one visit as the ID docs do, so they might know Lyme when they see it, and have something to compare it to, to say if it does or doesn't resemble any Lyme patient they have had before.

I would trust an LLMD to tell me I don't have Lyme, but not an ID doc.

Wondering if "the same 3 positive she always sees" are the ones your ID doc sees in all her patients, who according to her don't have Lyme?

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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seekhelp
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I want to know these three bands your ID doc thinks.
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JunkYardWily
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ok got my wb here

IGG bands 18, 23, 41 reactive
IGM 41 reactive

both tests say negative. my LLMD (highly recommended) said i for sure have lyme

ID said she would not say that I have lyme

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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seekhelp
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That's absurd she said there's no chance of Lyme. Ask the doc if she would be willing to do a blood transfusion with your blood. Somebody, somewhere up high is pulling strings to make this disease stealth.
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JunkYardWily
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well 41 is a generalized band and 18 is unknown so im not sure how strong my WB is. im not saying i dont have lyme its just i have seen 0 progress and some bad neuro stuff over the last week. when bitten i was young and healthy and started treatment only 6 weeks after bite and my neuro stuff is this bad! i cant do anything and the fact is one of these two drs is wrong.

my parents (drs themselves) want me to see a psychiatrist because the doctors "have found nothing wrong and you've been on abx for months now" i dont know what to. i feel like i could drop dead any day.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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map1131
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An ID told me 10 yrs ago that I had toxic shock syndrome. Happened to mention vagina swelling closed like my throat during onset of illness, and bingo, tampon = toxic shock @ 40 yrs old.

He laughed out loud when I told him my PCP was treating and suspected Lyme Disease.

Did nothing for me. Told me to go back to PCP and have them test for staph/toxic shock of vagina. It was negative.

I guess West Nile is an acceptable illness? Oh yeah they realized that even WN can be chronic and have everlasting effects on percentage of those exposed to this "killer" bug.

Oh now you guys have gone and got me fired up with this thread on ID ducks.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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You had a tick bite .. and have Lyme symptoms and you have some Lyme specific bands. Right?

Could be you're feeling bad even off the abx because you have a coinfection, or because the abx you've taken haven't had time to knock it down enough.

Go ahead to the psychiatrist. He/she will say you are fine...right?

and YES, you can have bad neuro symptoms within days of being bitten.

From Dr C's WB Explanation:

18: An outer surface protein.

23-25: Outer surface protein C (osp C).

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. (from 1999)


From 2005:

The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.

--------------------
--Lymetutu--
Opinions, not medical advice!

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timaca
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Junkyardwily~
I'm sorry that you are so ill. Ask your ID doctor to test you for a few other things:

Focus Diagnostics Lab:

http://www.focusdx.com/focus/1-reference_laboratory/index.asp

40540 HHV-6
2420 EBV Panel
40543 HHV-7
41380 Parvovirus
41025 VZV
2385 CMV
40525 HSV 1/2 ELISA
40735 Mycoplasma Pnumonia
23000 Chlamydia Serologies

40795 Q Fever
40205 Brucella
40881 Bartonella


Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=26

For enterovirus testing, use ARUP lab:

http://www.enterovirusfoundation.org/chronicinfections.shtml

For more info on HHV-6 see: www.hhv-6foundation.org

Test for lots of things, and treat what is most obviously wrong.

Good luck,
Timaca

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JunkYardWily
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thanks for the info LT.

i had a bite never saw a tick. i have all the symptoms the only problem is that symptoms for lyme includes every possible thing.

i will go to psych, it maybe helpful. i hope he says im fine. sometimes i wonder. it hard being sick day after day not loseing your mind.

made an appointment with dr c for monday. i hope he will be able to answer some questions. ill ask about those other tests

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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Lymetoo
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I hear ya on the "losing your mind" thing!

Hang in there!

--------------------
--Lymetutu--
Opinions, not medical advice!

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LightAtTheEnd
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Get the DVD of Under Our Skin and get your parents to watch it with you, if you can. That helped my parents to understand all the uncertainty and not think I was crazy.

"the fact is one of these two drs is wrong."

Sorry to say it, but your ID doc is wrong and so are your parents.

Too many people on this board have been told that there was nothing wrong with them, it was all in their heads, or they had something else and there was no treatment for it, and maybe it would go away or they would just have to live with it.

As a result they got extremely sick and suffered for years.

Many who had a similar history as you went to an LLMD, got treated properly, and got better.

You are not crazy, it's not in your head. Listen to your LLMD. They stay in business in spite of everything stacked against them because they care whether you get better or not.

My GP, who is a good doctor who is open minded and listens to her patients, still tried to find any explanation for my illness other than the tick bite, even though I got sick 10 days later with Lyme symptoms.

I tried to tell her more about the tick bite, but she interrupted me, laughed and said, "You don't have Lyme disease. Lyme disease is extremely rare around here."

Pick your place, because according to most doctors, it's extremely rare everywhere. This is not surprising since they don't recognize Lyme when they see it in front of them. They really have never seen a Lyme patient.

First she said I must have caught a cold virus, twice within 6 weeks, in the summer, with no respiratory symptoms, and I should go home and take Advil and I would be fine.

Next visit ("you again?"), she wanted to send me to a rheumatologist to check for RA. Then she said maybe it was sciatica. She wondered if it was my thyroid acting up.

I said no to all of those after looking them up, because none of them explained all the symptoms together, and are far less likely than an infection to have a sudden onset.

I could not believe that I got bit by a tick, then randomly got sick with a cold virus (or maybe it was West Nile, LOL), rheumatoid arthritis, sciatica AND thyroid trouble exactly 10 days later for no apparent reason. And none of those explain my emotional symptoms.

Lyme comes from ticks like the one that bit me, and causes ALL of the symptoms I have. My Western Blot had IgG 41+, 83-93 IND, and IgM 41 ++.

The 83-93 IND is classified as a negative test, but it tells me that a tiny bit of antibodies to Lyme DNA were found in my body. Where else could they have come from but Lyme bacteria?

I got bit by a tick, my body is acting as if I have Lyme, and the test shows I must have had some kind of exposure to it.

And my very experienced LLMD who has seen many, many Lyme patients, and his assistant who has just as much experience, and who have both had Lyme themselves, both had no doubt that I have Lyme.

They wouldn't wish it on anyone after living through it, and they have more patients than they can handle already plus a waiting list, so they are not just in it for the money and diagnosing people from greed.

My LLMD charges less than some others, and only works 3 days a week--if he wanted more money, he could easily change that.

The only people who doubted I have Lyme are my regular doctor and all my friends and relatives, and sometimes me, LOL. I never met anyone with Lyme disease before now. It's what I thought I had from the beginning, but everyone's skepticism made me doubt myself.

Then my GP started offering me pain meds, muscle relaxers, maybe antidepressants? Anything to try to relieve my symptoms, since she didn't know the cause.

She did actually want to do something to help me, and not just send me home without any help (after the third visit, where I insisted that the antibiotics I got her to give me for 3 months had not made me well; she was surprised they didn't work).

By that point she had stopped laughing at me and started looking at the articles and books about Lyme I brought to show her.

She was skeptical of my LLMD, when I told her I found one who is 2 states away and doesn't take insurance, but she grudgingly accepted my going to see him because she really didn't know what else to do.

But she was wrong when she insisted I could not and did not have Lyme.

If a well meaning, open minded doctor who pays attention to her patients can be wrong about that, how much more so an arrogant ID doc who ignores what you tell her and even your objective test results.

My mom was wrong when she told me to stop worrying so much and "making myself sick." (She has now admitted she was wrong and apologized.) First I got sick. THEN I started worrying.

Maybe you do have West Nile, but what is the likelihood that you got bit by a Lyme tick and a West Nile mosquito on the same day?

In my case, Lyme explains all my symptoms so I don't need to have anything else. If I had, say, sciatica, it would explain the pains in my leg, but not in my neck and shoulders, and wouldn't explain the fatigue, hormonal issues or emotional ones.

So then I would need to look for other explanations for those. And what causes sciatica, anyway? Well, Lyme disease can cause it, for one thing. So that doesn't rule out Lyme.

In my humble opinion, you should start with the evidence in front of you, your own history which you know better than anyone, and look for the simplest and most likely explanation that accounts for everything.

I feel for your confusion and doubt, because I am barely past the point of accepting my own diagnosis. Good luck to you, listen to your LLMD's advice, and I hope you are feeling better soon.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Lymetoo
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quote:
Originally posted by LightAtTheEnd:
[QB] Get the DVD of Under Our Skin and get your parents to watch it with you, if you can. That helped my parents to understand all the uncertainty and not think I was crazy.

"the fact is one of these two drs is wrong."

Sorry to say it, but your ID doc is wrong and so are your parents.


Great idea!!!

I think it's here:

www.underourskin.com

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Light.. that IND on 83-93 is still very significant because an IND is a weak positive, not to mention that band 83-93 contains the DNA of the Bb!

JunkYard... Did the ID test you for West Nile?

--------------------
--Lymetutu--
Opinions, not medical advice!

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sparkle7
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A psychiatrist prescribes drugs... They will probably tell you are are ----- (fill in the blank) & give you some psych drug that you (probably) do not need.

Seeing a therapist may be helpful but it's not in your mind if you are physically ill. I've been through this before. Just trying to share my experience.

When I first got ill - my GP was practically throwing samples of Prozak at me... I didn't take any of them. I wasn't depressed - I was in pain.

They finally told me that I had Fibromyalgia. After 9 years, I got a Lyme diagnosis.

All of this is very difficult. It must be hard having parents who are "experts"... Try to go with your own feelings about your health.

Lyme & the co-infections are real. If you take an abx & you feel like h_ll - chances are that you are herxing. The tests may not be accurate but your body knows.

When you start killing pathogens - you get sick. They pollute your body & it makes you feel worse until you are able to detox them. This is not easy stuff...

For whatever reason, our society is in denial about Lyme & a few other illnesses like CFS, Fibro, etc. Do they tell people in a cancer ward that they are crazy & it's all in their minds? NO...

I don't know why it is like this but I have some assumptions. There is a possibility that you are treating something that you don't have but it's very hard to tell what is what in Lyme-world.

You have to carefully consider everything & make up your own mind. Good luck!

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JunkYardWily
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thanks everyone for your support.

LAtE- i thought it was funny how you said you got sick then started to worry, i was the same way. however i never did see a tick, just had a bite.

LT-yeah she tested me for WNV. will i survive if i have it?

sparkel- i do believe lyme is real. i just confused and scared. havent seen much progress and worried about WNV and MS

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purplemom
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"They somehow try to tell people that they are simultaneously completely cured, and that they never had it in the first place. Not sure how they can cure you of what they think you don't have."

lightattheend: I laughed when I read this. this was my experience exactly with my daughter's lyme---tick bite , followed by 6 weeks of fevers/muscles aches and bell's palsy--see an ID 4 months later due to more ticks bites and what do they say about her original CDC postive test "she probably never had lyme but if she did she is immune from getting it again..."

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Lymetoo
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quote:
Originally posted by JunkYardWily:


LT-yeah she tested me for WNV. will i survive if i have it?


Probably so!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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sparkle7
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I don't think that WNV lingers. If you have it, you get very sick & either you get well or you die.

Most people get well - it's the people who have other health problems who die - from what I have heard. I don't think it's like Lyme in that you stay ill for years.

I'm not a scientist - so, I might be wrong. I lived in NJ (near NYC) & it was very prevalent there when it was first "discovered".

Yes - this whole thing is very scary & frustrating. I can empathize... Things can be worse so try to hold on & don't get too freaked out. We all try to go on as best as we can.

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Robin123
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Your bands are Lyme bands. LLMDs will treat you. ID docs mostly won't. You need to see an LLMD.
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map1131
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Sparkle, yes there are many people with lingering sx of WN. Our local news has done many stories on people that were left with disabling sx after the "cure". Sound familiar?

Many sx were talked about but I remember many had auto-immune responses afterwards.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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JunkYardWily
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just got back from follow up apt with ID dr today...

no west nile, everything looks good

said must of had some infection (my gf said "yeah its called lyme") that takes a while to get over and now i sould start comming out of it

kind of a big waste of time, now she wants me to see a neurologist. [Roll Eyes]

it seems like everything i read from people on here turns out to be right. cant tell you how many times i saw the phrase "ID drs are a waste of time and money"

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sick since 9-09
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igm, 41 reactive

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randibear
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i went to the most expensive and "best" id doc in fort worth, supposed to be the best in north texas.

after wasting six months and tons of money she tells me "nobody can duplicate igenex, so we can't prove they know anything". and then when i left she says "i never thought you had lyme anyway and there's nothing wrong with you except stress and weight."

arrrghhhhh..

learned real quick i did!!!

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do not look back when the only course is forward

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Bugg
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For what it's worth, I had a tickbite and a bullseye rash and an ID doc at Vanderbilt in Nashville (where we don't have lyme, of course) told me I couldn't have lyme and most likely had West Nile Virus....So, it appears the antibody reactions might be similar...

However, this same ID doc, when I showed him my Western Blot with many positives on it, told me he didn't know what it was and didn't know how to read it....So, what I'm saying is that you cannot necessarily exclude the fact this is lyme based on an ID doc telling you he thinks it's West Nile..(Both cause antibody reactions and can present with similar clinical symptoms)

Hang in there...You will get through this....

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map1131
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Junk, didn't it make you feel better to know this ID doc told you it will pass soon. lol Well it's really not funny at all.

At least my ID doc come to some kind of conclusion. He thought it was toxic shock syndrome, laughed at my PCP dx of lyme and sent me back to have vaginal tests done by PCP. My PCP laughed and said okay lets do a swab. Surprise, surprise no vagainal strep found.

My rheum doc told me 10 yrs ago all I had was a virus and when it left my body, the pain and other sx would disappear. I'm still waiting. Idiot!

I doubt the rheum will find your answers either. Just another frustrating road. But hey there is a possibly they might have a clue and are willing to help treat some of your pain.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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seekhelp
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Sometimes this fact does make me worry. I admit it. I don't know why I just can't nod my head to this as so many others can. Maybe I'll come around. [Smile]

quote:
Originally posted by randibear:

after wasting six months and tons of money she tells me "nobody can duplicate igenex, so we can't prove they know anything"


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JunkYardWily
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yeah i wonder that myself sometimes seek. they do test additional bands which i think all the labs should do. and i have 3 positive bands on quest which doensnt like to dx lyme. tack on hanging out at a park with tons of deer and a bite that didnt go away for a month and...

also map i have no pain at all. another reason why i question the lyme dx. my symptoms are not near in number of what everyone else has. its almost all neurological problems, numbness, buzzing. Also flu achy feeling, just feeling like crap all the time.

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igm, 41 reactive

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LightAtTheEnd
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JunkYard,

I don't have a lot of symptoms either, and mine are pretty mild. Joint/muscle pain, fatigue, and hormonal/emotional issues are my main ones, and I am pretty functional other than needing to sleep an excessive amount.

Originally I had the flu-ish feeling, and when it stopped after a few months, I started having the fatigue.

I don't seem to have anything that sounds like neuro or heart problems, and I'm not as bad off as most people on here.

But I definitely have Lyme, and have had for 9 months now, so it is not going away easily.

It can cause a huge range of symptoms, but may cause only a few in one person, and a different few in another person, and everybody seems to say they move around and come and go, which is my experience too.

Many people have said their symptoms changed or got worse over the years, or altered when they started a new medicine, so somebody with severe issues now may have had lesser ones at the beginning of their illness.

You can't rule it out based on your symptoms being different or more mild than somebody else. LLMDs who have seen hundreds or thousands of Lyme patients can give better advice about which symptoms could be Lyme.

There are many strains of Borrelia, and one strain can have different effects in different people. That's why it is so difficult for non-Lyme doctors to recognize a Lyme patient.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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LightAtTheEnd
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Forgot to mention, specific combinations of coinfections give people widely differing symptoms, too.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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JunkYardWily
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thanks for the input light, but i have to say that was one of the more dissapointing postes i have read on my condition.

i had hope based on the fact that i dont have as many symptoms, now you say some who are in terrible shape now started out this way.

my LLMD has treated over 7000 patients and is convinced its lyme and i agree. i just hear so much from others including my dr parents who say im killing myself with abx and i need to go to psyc.

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Lymetoo
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Junkyard.... Seems that many have mostly neuro symptoms and others have mostly pain .. it just depends upon our bodies and, I would guess, which strain of lyme we have.

Then add in coinfections, and that makes us all very different.

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--Lymetutu--
Opinions, not medical advice!

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JunkYardWily
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that is strange, i wonder which type has higher success rates from treatment.

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Lymetoo
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I think it's a toss up!

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Opinions, not medical advice!

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LightAtTheEnd
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I didn't mean to be discouraging. I only post on here at all because I need support, or because I hope I can help somebody else.

I only meant that you should listen to your LLMD's advice, because Lyme has the possibility to get worse if you don't treat it, and the treatment is more effective the sooner you start it.

Don't let another doctor convince you that you don't have Lyme, if your LLMD says you do and that agrees with your own instincts and knowledge of your symptoms. You know your own experience better than anyone else.

My LLMD told me there is no reason why I shouldn't get well. [Smile]

People who have particularly mentioned getting worse in later years have usually been untreated and undiagnosed all that time, or diagnosed early, treated with 3 weeks of doxycycline, and then untreated for the next number of years but still sick.

So they might say they recalled a tick bite 20 years ago, and having flu, fatigue and joint pain after that, which they ignored or couldn't identify, but they didn't become bedridden or get brain fog or have other very difficult symptoms until 18 years later, and then they found an LLMD and got diagnosed and treated and started getting better.

(I am making this up as an example--it's not anybody's real story.) Then they say they were treated for one to several years by an LLMD, and got either completely or significantly better.

There are a few who have to continue treatment indefinitely, but they might not have had to if they had gotten diagnosed and treated years earlier.

So the point I meant to make was that there is a compelling reason to get treatment sooner rather than later, because there is so much hope of improvement if you do, and possibility of decline if you don't.

I didn't mean to imply that you will get worse no matter what you do.

I am pretty sure that the fact that I am being treated right now is protecting me from developing any worse symptoms I could potentially get if I were not getting treated.

I know they say that if an infected pregnant woman takes antibiotics for it while pregnant, then it is very unlikely to pass to the baby. So antibiotics inhibit it somewhat from spreading or advancing even when they have not managed to kill it yet.

I just think that it's worth pushing to get good medical advice from an LLMD and good treatment as early as you suspect you might have Lyme, because it can get worse over time instead of staying the same, if you ignore it and let it go.

I am confident right now that I am going to be much, much better before the end of this year, now that I have started good treatment with my LLMD.

I was very worried about the possibility of future relapse after I finally get to that point of feeling well, until I remembered that ticks are still hiding under every bush.

Even if I had never had Lyme at all, I would still have a significant risk of getting it in the future--I just didn't know that risk was there until I got sick, and I had no idea how bad it could be for those who get it.

So there is no point being anxious about it coming back one day. Maybe it will, maybe it won't. Now I am armed with knowledge that I didn't have before.

Once I have beaten it the first time, I'll know I can do it again if I have to. I'll recognize it more easily, and I'll know where to find a doctor who can help.

Some people kill it completely, and it never comes back. The trouble is, you can't prove that has happened.

So I know I will have to continue a healthy lifestyle for the rest of my life, to try to prevent a future relapse, even when I'm done with treatment.

But that is a positive thing anyway, which I was struggling to accomplish before Lyme. Lyme is giving me a chance to learn how to do it, and a strong motivation to keep it up.

Everything about this illness can be discouraging, but there are all kinds of reasons for hope, so please don't let something I say bring you down.

You have more than enough to cope with from others.

"i just hear so much from others including my dr parents who say im killing myself with abx and i need to go to psyc."

You and your LLMD both agree that it's Lyme. An LLMD who has treated 7000 patients must have many success stories among them.

You could be killing yourself to stop treating the Lyme. You are not crazy, and it's not in your head.

Of course you are dealing with all the stress of having this illness, and of being disbelieved and criticized by the people around you (as we all are), so maybe psych could help with that, but it couldn't kill bacteria for you.

At least your loved ones are telling you that they really want you to do whatever is necessary for you to stay alive and get better, even though they don't understand what that is.

When you recover, then they will be glad that you didn't listen to them about the LLMD and the antibiotics.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Lymetoo
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Light said,
"When you recover, then they will be glad that you didn't listen to them about the LLMD and the antibiotics."

--------------------

That's for sure... and if they keep harping on the psych .. go to one. I'm sure you'll be declared SANE!

--------------------
--Lymetutu--
Opinions, not medical advice!

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JunkYardWily
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thanks for the imput guys, light i wasnt trying to make you feel bad i was just take things too hard at times and i have kind of a negative attitude about it, im working on it.

lymetoo, i am going to a psychologist just started for the first time in my life 3 weeks ago. she doesnt think im crazy (although i have to wonder about some of her othe patients [Big Grin] )

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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