posted
6 March 2008, I returned to the Infectious disease doctor today.
I brought with me all the research I had done and my medical record which I had highlighted the entry from about a year ago when I had an INFECTED Insect bite (unknown insect).
(NOTE: the last time I saw him which was also the first time, he told me that I could not possibly have Lyme because I don't remember being bitten and it is not the season for Lyme.
He further told me to monitor my temperature and come back in a week. Ultimately he said I just have a virus that is lingering.)
I told him that I had found an entry I forgot about when I had an insect bite. HE TOLD ME THAT IT DOESNT MEAN ANYTHING!.
WHAT? The last appointment he asked about a possible bite and I couldn't remember; now I found something and it doesn't mean anything anymore?
I asked him if I could see the Western Blot that was done. He said once I tested positive with the ELISA test they sent the blood work to have a confirmatory test done, (which I assumed was the Western Blot) and he did not get a western blot result back (my first doc did not request the Western Blot).
I asked him what was next, and he said he was going to order all the blood work again.
He is thinking now that it is MONO, I was already tested for MONO, have no symptoms of MONO but he thinks it might turn positive after all this time has passed.
I told him to order the Western Blot; he told me I have to test Positive with the ELISA AGAIN before he can send it for the Western Blot.
I left the office and was HIGHLY upset. I went to the lab and donated a gallon of blood for fun.
Once I left the hospital I called my Insurance (Tricare) and asked them if I could go and see a specific doctor.
(I had a list thanks to everyone here)
The lady said she could send me if the docs were in the Tricare network.
OF course none of them were, interestingly the Infectious Disease doc my Military doc sent me to (which has to go through Tricare) was a non-network doctor.
I asked the Tricare rep. how this was possible and she said any non-network doc has to be requested for by my primary doctor. Well GEEZE that is not going to happen!
I know that she is not going to refer me again and I am not going to let this go.
I called the Patient Rep at the army hospital where my primary care is and told her what was going on and what I wanted to do(see an LLMD).
This lady told me she was going to give my case to the commander of the hospital and another doc to review and get back to me tomorrow.
I can already see were this is going. Wish me luck for tomorrow and hope I don't beat anyone up at the hospital.
Thanks everyone for lending me your ears. Or eyes I guess. LOL
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Sounds like a whole FLOCK of ducks quacking in the background.
Appears to be time to make up your mind,,,to go it on your own,,,and see a LLMD on your own buck!!
THEN take it from there!!being--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Two positive Elisas'?????!!!!!!????
That duck must be out of his mind.
Can't you call Igenex, have them send you the test,
And go to a local walk in clinic....have the doctor order 188 and 189 (WB IgM and IgG)
And take your blood?
Just a thought. Sometimes the only thing these specialists specialize in
Is Idiocy. Hang in there. Don't give up...
Unfortunately what you went through is just typical.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tuck this in your cap and use as needed.
You need to tell the insurance reps and anyone else who will listen that you need a doctor who treats "CHRONIC Lyme".
Since the IDSA and Infectious disease doctors don't treat CHRONIC Lyme.. and won't even claim it exists (even in their guidelines).. they CAN'T see you!!!! It would be like sending you to a foot doctor for a broken jaw.
This leaves ONLY your choice of a LLMD... which you give them the names when they say they can't find anyone who treats it.
And they need to call the places with specific instructions from YOU that say "CHRONIC Lyme".. or usually they will.. and they will admit they don't have anyone who can see you.
posted
Proud to serve, I appreciate your frustrations, so please don't take this the wrong way,
but you might want to abstain from donating blood when you think you might have an infectious disease.
That said, I do wish you the best of luck in resolving your issue. There are good llmd's in nj, that is the one up side to being in this state. I suspect that you will have to pay out of pocket though, sorry to say.
As to your doc looking at mono, I think he's really looking at ebv (the virus that causes mono), which I have heard can cause some false positive band (s?) on the WB. Check the viral testing thread on the medical postings for more info on viruses. I have not heard of ebv causing a false positive elisa, though.
It certainly didn't with me, and I have high EBV titers, but no positive lyme test. besides, you can most certainly have reactivated EBV, and Lyme at the same time. (as you will see if you check out that thread).
Best of luck again, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Demand to see your Western blot results. Labs always and only do a Western blot to confirm a positive ELISA.
Your doctor doesn't have to request a Western blot. It's done automatically by the lab when there is a positive ELISA. It's a 2-step process.
You had a positive ELISA....and I bet you also have a positive Western blot and this doctor is not willing to show you because he will refuse to acknowledge it or treat you. If he does treat you, it will likely be insufficient to kill the bacteria.
Demand to look at your medical record. Demand a copy of your Western blot. He'll probably lie and tell you it wasn't done or it got lost. You need to get YOUR test results.
I wouldn't let them test me again. They just hope you'll come up negative so they can deny you a diagnosis or treatment. You need to be tested for coinfections also.
You're wasting your health and your time on this guy. He wouldn't recognize Lyme because he has on blinders....you had a documented infected bite, a positive ELISA, probably a positive Western blot, a fever, symptoms and he's still denying your lab-confirmed illness??????
Get a LLMD and start the healing process.
When was your elisa test? ...and your infected "insect" bite?
..one year ago is tick season...they are active above 40 degrees...at least, and I've seen photos of them active while snow is on the ground.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Quoting lymemommy: "but you might want to abstain from donating blood when you think you might have an infectious disease."
When I said "I went to the lab and donated a gallon of blood for fun" I meant that I was sent there to have all of my blood work repeated and they took what seemed like a gallon of blood,
and it was just for fun because I know they are waisting their time and mine. Sorry for the confusion.
quoting hshbmom: "When was your elisa test? ...and your infected "insect" bite?"
My ELISA test was almost a month ago. and the insect bite was in FEB of 2007.
Please believe me I know I am waisting my time with this doctor. I have done everything in my power so far to get to an LLMD.
I WISH it was as easy as just paying out of my own pocket.
But as long as I am Active duty everything that I have done medically is recorded and monitored by the military medical system.
I am not ALLOWED to go and do whatever I want even if I pay out of my own pocket.
ALL I can do is submit requests and talk to the patient representative.
The Commander at the hospital reviewed my case and the patient rep called me back last night.
She said they think I have and auto immune disorder and they are sending me to a Rheumatologist.
My only hope now is to request that the Commander send me to a Lyme Literate Rheumatologist.
I know this is a long term illness and something that WILL have me discharged. So for that reason alone I will have no choice but to deal with the military medical.
I know you all may not competely understand how the Military medical system works but I am trying by best to help you understand my situation.
Let me give you an example: If one of my doctors do surgery to fix my right leg and cut off my left leg by accident, I have NO recourse. I cannot sue.
The doctor that did it might get a repremand or something like that but I would get nothing but a Discharge and a measly disability check.
I do thank you all for your help and it really helps me stay grounded to read all of your replies.
My next step is to call my congressmen and submit a complaint to him.
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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posted
proud to serve I truly appologize for confusion about the blood donor thing.
Hsbh posted an excellent link about lyme on military posts on you medical questions thread. IF I remember correctly, Earle acounted for 50% of the docmented Lyme cases in Monmouth County from 1976 to 1986. I have also read about them having those corn bin/insecticide applicators installed on the base to try to reduce the tick infected population.
This base is of interest to me, cause it is very close to where I live.
You are definately in a difficult bind, without a doubt.
Best of luck, I hope you can work this out!! KP.
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Dearest Proud -- Make an appointment with the Commander to plead your case. It is important that the Commander understands your side of the story, and he won't get it by reading the paperwork.
See if you can at least get permission to see a "specialist." Even better is if you can get the Commander to think it is his idea. I mean, after all, you have a positive test, so it only seems right that you see a specialist, even if you have to pay out-of-pocket, just to be sure. Surely, the Commander agrees?
Until you can get an appointment with the Commander, you are sadly forced to do their dog and pony dance. Which means seeing the Rheumy. And more gallons of blood given just for the fun of it. Sorry about that.
Good luck! I am sorry you are going through this.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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bettyg
Unregistered
posted
proud, sorry to read this.
i lost internet for 5 days till late tues. with luck; at library; 10 min. left; no time to talk!
IP: Logged |
posted
(also posted in medical questions : "I FINALLY GOT MY WESTERN BLOT RESULTS!!!"
I did like everyone told me and demanded my western blot results I now know what my doctor meant by "you only tested possitive in 2 of the 3 areas". Only she misread the criteria. It states "a positive result means 2 OR 3 of the bands are present".
The following is what I got.
LYME AB TOTAL . . . . . . . 1.44 H (0.00-1.09)
18KD . . . . . . NOT PRESENT
23KD . . . . . . NOT PRESENT
28KD . . . . . . NOT PRESENT
30KD . . . . . . NOT PRESENT
39KD . . . . . . NOT PRESENT
41KD . . . . . . NOT PRESENT
45KD . . . . . . NOT PRESENT
58KD . . . . . . NOT PRESENT
66KD . . . . . . NOT PRESENT
93KD . . . . . . NOT PRESENT
23KD IGM . . . . . PRESENT
39KD IGM . . . . . NOT PRESENT
41KD IGM . . . . . PRESENT
What do these bands mean?
according to the criteria on the blood work I am positive yet the doctors still dont agree. go figure.
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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posted
I did look at the thread on the medical questions board that explains the bands but I still dont know exactly what they mean individually or together.
I have heard other people say they are this band and that band.
What does it mean if they all ultimately mean Lyme?
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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posted
Proud to Serve, Please mail me at [email protected]. I to am in the military with Lyme. Chip
Posts: 3 | From va | Registered: Mar 2008
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If there is no answer to be had for my previous question. what about........
How long typically does it take for the more severe symptoms to start in?
I know alot of you have said it took many many years to be diagnosed. but how long after exposure or suspected exposure before severe symptoms set in?
As many of you already know I am in for a long fight just to start some kind of treatment. And not knowing how long I have to fight before this takes complete control of my body and mind is filling most of EVERYDAY with a sense of PANIC.
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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posted
It can take a long time for the "serious" symptoms to kick in. In my case, I got bitten when I was 11 years old. Throughout the years I had some strange things happen like bouts of fatigue, joint pain, sore throats, irritability, nervousness, rib cage soreness etc. It was all transient. A year ago(17 years after tick bite) I was hit by many neuro symptoms such as twitching, tingling, burning, eye pains, blurred vision, stiffness etc. overnight. After 10 months of antibiotics still having the excruciating burning/neuro pain. If it was me I'd move heaven and earth to get treated in time, knowing what I know now.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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bettyg
Unregistered
posted
[QUOTE]Originally posted by proudtoserve:
I did like everyone told me and demanded my western blot results I now know what my doctor meant by "you only tested possitive in 2 of the 3 areas". Only she misread the criteria. It states "a positive result means 2 OR 3 of the bands are present".
The following is what I got.
LYME AB TOTAL . . . . . . . 1.44 H (0.00-1.09)
23KD IGM . . . . . PRESENT
41KD IGM . . . . . PRESENT
What do these bands mean?
according to the criteria on the blood work I am positive yet the doctors still dont agree. go figure. /QUOTE]
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
posted
quoting hshbmom: "I wouldn't let them test me again. They just hope you'll come up negative so they can deny you a diagnosis or treatment. You need to be tested for coinfections also."
Well guess what the ELISA is now negative. I know you are suprised.
On top of that this doctor said I have a slight possitivity for MONO and my WBC count is still low.
I WENT OFF! on him. I asked him HOW is it that I was possitive on ELISA and WB and now I am negative.
THIS MAN actually tried telling me that the WB and ELISA is FALSE POSITIVE 50-70% of the time.!
After quoting the ADVANCED TOPICS IN LYME DISEASE for 10 minutes he tells me that he will give me 10 days doxycicline but I really only have MONO.
I told him to explain to me why he was sooooo convinced I didnt have Lyme and he stated that I didnt have symptoms.
WHAT? I gave him a list of symptoms and he came back with "well, when they say joint pain, they mean that the joint is large and swollen, you dont have that."
He Further stated "a bite from a year ago would not be showing symptoms now, you ONLY have symptoms a couple of weeks later"
At that point I told him he was a wack job and he said he would call my primary doctor and let her know what he thinks.
So I said you do whatever you want to do and I hung up on him. IT FELT GRRRREAT!!!
Anyway thought you all could get a good laugh with me.
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Oh man! I wish I went off like that on a few doctors. I don't know what I was afraid of. I bet it felt great!!! I'm almost tempted to call some of them now and do just that.
I went to a Neurologist in Boston before getting dx. He's supposed to be one of the best. So I go to this guy with major neurological symptoms like arms and legs going numb. He tried to tell me I was probably just sitting the wrong way and cutting off my circulation!!!!
So now my dx is Lyme and Mycoplasma (so far). Isn't it his job to know about diseases that cause Neuro problems?!!!!
You go girl!
Posts: 2541 | From Northeast | Registered: Jan 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am glad you got the satisfaction of telling off that duck.
Think of how many people don't research, don't look and just blindly
Accept what their doc tells them.
After finally getting my diagnosis, I spent some time writing letters to
The many specialists I had seen who refused to even test me for Lyme
Since we don't have that here.
You enjoy this moment and then go about the business of getting well.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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but telling that duck off must have felt good.... I know for me...just you doing that made me feel good!!!
hope things get better soon...... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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you asked how long it takes for the serious symptoms to set in. From what I've seen, it varies from person to person,
and it depends on whether or not co-infections are involved. (and which ones).
We think that my son was first bit in the summer of 2006, which is when he started having GI symptoms. In addition, he frequently made bizarre statements, like "I'm going to put you in a dumpster, mommy."
Then in spring 2007, the falling asleep at the lunch table, then July he got the high fevers, over 20 em rashes, and the cdc positive lyme test.
His LLMD has dx'd him with chronic Lyme.
His symptoms have included loss of sensation within the GI tract (until recently he couldn't feel when he had to have a bm) ocd behaviors,
mood swings, irritability, impulse control issues, too tired to walk, headaches, stomach aches, knee and leg pain, most recently severe
shooting pains in his legs that lasts for a few days (like he got stung by 100 bees, in his words).
So for some, they go a long time with minimal symptoms, for others they get pretty sick pretty fast.
His doc thinks that he has bart as well as Lyme, I also wonder about babs. The bottom line is even after many months of abx, he hasn't gotten all that much better.
I hope that you get treatment above and beyond 10 days of doxy soon, this is not an illness to mess with.
best of luck.
kp
ps, as to the mono thing, I know I mentioned it before, but EBV titers can become high in persons who have a chronic medical condition (including Lyme) which suggests a reactivation of the EBV virus. EBV has symptoms of its own, which are very similar to Lyme. I know that you are processing a lot right now, but eventually you might want to look into this.
posted
Lymemommy first my heart goes out to you and your son. I am horrified at the idea that my children could have lyme.
I pray that your son starts to improve. And I hope that you are well also, as a mother myself I know how stress can take a toll on us both mentally and physically, especially when our kids health is in jeopardy.
Quoting you(lymemommy) "ps, as to the mono thing, I know I mentioned it before, but EBV titers can become high in persons who have a chronic medical condition (including Lyme) which suggests a reactivation of the EBV virus. EBV has symptoms of its own, which are very similar to Lyme. I know that you are processing a lot right now, but eventually you might want to look into this. "
I did look into EBV, it is also a scary prospect.
It has been linked to many cancers and other diseases and syndroms.
The only thing I cant connect to my situation is the fact that the studies and articles I read say that a positive IgG is always present.
I was negative on my IgG but positive on IgM.
I dont know if I had the same test as required for mono. meaning I couldnt figure out if there is a diferent western blot for mono and lyme.
The first time they tested me for mono it was negative, and the second time I was positive.
For Mono or EBV as soon as you are infected or within days you will have a positive antibody test.
I was tested the first time for mono after 20+ days of a fever. and it was negative.
I can only speculate that since I have started having the fever and my WBC count is below normal.
That perhaps the mono test is NOW "slightly positive" because my immune system for whatever reason is not working and maybe I have picked up the virus sometime between the 20+day of fever and now.
Please let me know if maybe I interpreted what I read wrong?
It jsut seems to me that I could have anything at this point. Especially since my immune system doesnt seem to be working.
Proud
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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When docs test for mono, they usually do a mono spot. This is not the test that will show the EBV titers that are associated with reactivation
EBV does indeed have its own western blot type test, thats the one that gives the titers.
You are correct, the reactivation shows in IgG, not IgM.
Yes, the symptoms and associations with cancer are scary, but perhaps less scary for someone with a know illness that has compromised the immune system, thus allowing EBV to replicate unchecked.
I learned all this stuff because on top of having a sick little one, I found out through bloodwork done by my child's doc that I have high EBV titers (like cancer associated high), but I test negative for Lyme.
I got sent to a hemotologist and had a ct scan, no cancer, thank God. But I do feel really tired a lot of the time, some what I guess is neuropathy (i get sharp little pains like something is biting me) and I woke up a few times with numb hands and or numb legs from the knee down.
My hands swelled up a couple of ring sizes, I'm gaining wait at an exponential rate (this is not typical of EBV though) and I have had joint pain at times. Also I am hyper sensitive to bug bites.
My little one is ok most of the time, he seems to have a bad day every five days or so, which is a huge improvement over the daily episodes that we had at the beginning of the school year and in January after the holiday break.
I worry about the coinfection issue for him, as he is too young for many of the meds for coinfections.
I don't know if you are aware, but next door to the base that you are stationed at is a county landfill. On the other side of the landfill is a hazardous waste management site.
In addition to the four-legged critters that can carry Lyme and co, we have hundreds of birds circling constantly.
I dread to think of the nasties that these critters all carry!!!
Back to the EBV thing, don't be suprised or freaked if over time your titers go up, a lot of the folks here have had the same thing. Our immune system when healthy limits the reproduction of EBV (you can't kill it cause it's a virus). Because Lyme takes a toll on the immune system, EBV and any other viruses that you might be harbouring will start to have a party.
Timaca is our current viral guru, she has a thread on viral testing that gets bumped up regularly for those who have an interest.
I hope all of that helps, and thank you so much for your kind thoughts about my son. In my experience, lyme affects the whole family, both physically and mentally, even when the whole family doesn't "have" Lyme.
Do take care of yourself, and of course protect your little ones as best you can (no walks in the woods around here!!) Until they invent insect repellant body condoms in sizes ranging from 6mos to xxxl big and tall man, I am going to have some degree of tick anxiety!!
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Don't know if you got your answer about the different bands being positive. Each band represents your immune system reacting to a specific protein of the bacteria. Betty G. gave you the identity of the proteins as the outer membrane and the tail of the bacteria.
As for getting a month's worth of doxy. Couldn't you "develop" a case of acne that needs treatment with doxy. Ducks will prescribe months of doxy for acne & other skin conditions, but not for Lyme! Crazy, but it might get you the abx you need for your Lyme.
Posts: 81 | From Iowa | Registered: May 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Proud, I'm so sorry that you have joined in the circle and craziness of lyme & company. I hope you find your answers soon. I hope your treatment is a simple one.
Thanks for serving our country.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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