posted
***edit, this thread was orginally about some bogus info i got on HIV and ELSIA
That has been resolved
Now its about me having Kaiser and no being able to get proper treatment. Thus far***
So, long story kinda short ive been suffering from Lyme related symptoms, from what i can tell, 8 years now. Even put me in the hospital once for pericarditis.
Anyhow, since ive been sick i was tested for HIV at least 2 times. Both came up negative. They were at least 6 months apart.
Well, this last week, ive finally tested positive for the western blot (lyme). I was fairly excited to finally know what the problem is. Finally.
So, i had another question i posted somewhere else. The fact of the matter is i dont trust my HMO. The original question follows.
"Ive come up positive for both tests. I haven't gone in since i tested positive for the Western Blot. But in the past, my HMO, Kaiser, refuses to treat me for anything.
Now im scared when i go in they are still going to try and give me the run around even though i exhibit 27 symptoms of the disease and 'passed' all the tests and i believe all my MS results have come back negative.
Im freaking out cos my health keep getting worse yet they do nothing.
I have an appt on Monday to see the infectious disease doctor.. but again, i can just imagine them picking 1 thing out and saying i dont have Lyme even though the tests and symptoms say i do.
Im wondering how much stock i can put into these tests if i have to argue with them about treating me."
And to that someone said "I thought a positive ELISA and Western Blot meant HIV?"
Which made me freak out inside. Since ive tested neg for HIV since ive been dating my current GF you can imagine my horror to think that this might be true.
But im not sure if the ELSIA for HIV looks for something differnt then the BORRELIA BURGDORFERI ANTIBODY.
These are my exact tests. And make note the the end of the Western Blot says i have lyme. Am i freaking out for nothing? (at least about the HIV)
BORRELIA BURGDORFERI ANTIBODY B BURGDORFERI AB, EIA, QL Positive - A B BURGDORFERI AB, EIA, QL 1.83 H
Additional Lyme disease testing ordered, qual Has been added -
(so that says lyme, nothing about HIV).
The western blot is as follows..
Component Your Value Standard Range Flag B burgdorferi IgG band pattern, Ser, immune blot Positive Negative- A
B burgdorferi 18kd IgG, IB Reactive - A
B burgdorferi 23kd IgG, IB Nonreactive -
B burgdorferi 28kd IgG, IB Nonreactive -
B burgdorferi 30kd IgG, IB Nonreactive -
B burgdorferi 39kd IgG, IB Nonreactive -
B burgdorferi 41kd IgG, IB Reactive - A
B burgdorferi 45kd IgG, IB Reactive - A
B burgdorferi 58kd IgG, IB Reactive - A
B burgdorferi 66kd IgG, IB Nonreactive - B burgdorferi 93kd IgG, IB Reactive - A
B burgdorferi IgM band pattern,,Ser, immune blot Positive Negative- A
B burgdorferi 23kd IgM, IB Reactive - A
B burgdorferi 39kd IgM, IB Nonreactive -
B burgdorferi 41kd IgM, IB Reactive - A
LYME (Borrelia burgdorferi) interpretation
So, it says nothing about a test for HIV. My docs, in the past year have never mentioned HIV.
Am i stupid to be freaked out by some random person telling me wrong info?
posted
That makes me feel better. The 'funny' thing is i care more about my girfriend then I if it was HIV. The horror.
PLus, dont docs have to make you sign a waiver to test you for HIV? I know everytime ive been tested for HIV (in Colorado), which has been about 6 times (as i always get tested when i date someone new, for them and me) they always made me sign a waiver. So i cant see how they can do a different test for HIV, and not the standard one, and not make me sign a waiver.
Posts: 47 | From Denver | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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My eyes went a bit blurry on the first go-around and I mis-read it.
I just saw this in your note:
You said: " . . . I have an appt on Monday to see the infectious disease doctor.. but again, i can just imagine them picking 1 thing out and saying i dont have Lyme even though the tests and symptoms say i do. . . . "
Uh, well, it's not that simple.
I wish you could see what we call a LLMD. Most infectious doctors think lyme is no big deal. I would cancel the appointment - or at least consider doing so - until you find one who is up on ILADS research.
posted
HIV patients show a low white blood cell count . That coupled with their life style would then merit a full HIV test.
If you have'nt put yourself at any risk since your HIV tests then all should be ok . Check me out on this if you wish . Its a more accurate test than Lyme I believe .
Hope this gives you some peace of mind .
Posts: 153 | From England | Registered: Jun 2008
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posted
Problem is im rather broke so i have no choice but to go with Kaiser. Im under the impression that some of the antibiotics are cheap.. but others are expensive.
I have to ride it out with Kaiser, my HMO, until either January rolls around or if i take my GF up on her offer to marry her so i can get on Blue Cross/Blue Shield in August.
But my symptoms over the past month, the paraestesia i have spread in my body and I feel i cant wait much longer as i dont want to pass the point of irreparable damage. Although i think that is already the case with my right hand.
So, what im trying to do is get as much info on what treatment is good before i go in to see the doc so i can ask for it.
(the second number is the normal range)
Posts: 47 | From Denver | Registered: Jul 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
ELISA and Western Blot are TYPES of tests. There is an ELISA and WB for HIV and for Lyme and they have nothing in common. I am not clear how you decided that you had HIV? Did I miss something in your test results??
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I also want to add, that when i say i was tested for HIV 2 times.. there were after way after i started getting Lyme symptoms bad enough that it put me in the hospital. So, i would guess they were a year ago and six months before that. Not 8 years ago or anything.
All my life ive probably been tested 6 or more times.. all more or less in the past 6 years.
Posts: 47 | From Denver | Registered: Jul 2006
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What it boiled down to was i asked the question about my HMO not treating me and the relbility of the tests, that i quoted in the original post, and someone came back and said they thought ELISA and WB tests, together, confirm HIV. SO, i freaked. And could find nothing online that told me if there were 2 differnt tests for those but both using WB.
So, what you are saying, is that there is indeed 2 differnt tests using WB. One for HIV and one for Lyme?
Posts: 47 | From Denver | Registered: Jul 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
You can release the HIV fear with regard to the tests you had . They are not the same tests.
You are correct too, that you would know if you had been tested for HIV. Not only that, your doctor would likely not have given you the test results without some serious talking.
Now you get to move on to Lyme treatment.
BTW, I do know a few people who have had their orals covered by HMOs, so it is possible. Hopefully your meds will be covered too.
Editing to add that there is an ELISA and a WB for HIV. Same type of test but they are looking for infection with HIV. Your test was looking for infection with Lyme (borrelia).
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
your WBC is a lot higher than mine. I run very low around 4.1
HIV tests are pretty accurate, i was tested twice too.
I had one infectious disease dr say i had lymphoma hiding out somewhere just had to find it.
-------------------- "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
I think they will cover the orals or any meds.
But from what ive read.. since ive had it for so long and suffer from nerologic disease from it.. ive read the recommendation saying im supposed to have Ceftriaxone 2g a day, intravenously.
And please don't get upset with me if that is wrong.. its just what i read.
But im just concerned if my HMO doesn't try to deny me treatment in the first place.. they are going to go the cheapest way possible even if it was covered by my insurance. All this assuming that medication, or another, is expensive for them.
Its sad when i read treatments for this disease, and i think even on the CDC website and they precursor alot of stuff with "A cost effective treatment is"
What the heck does "cost effectivness" have to do with my health? Makes me angry to read that.
posted
And thank you, thank you, thank you, thank you, all for taking the time to alleviate my fears and give me some good info. Its almost as hard staying positive with this disease then getting it diagnosed and treated.
Posts: 47 | From Denver | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
[edited to add: in the time it took me to compile this post, many people have answered some of your questions. I can't go back and delete stuff that may echo their ideas. So, forgive repeated material.
I also see, now, that you are not new to this. Ohhhh.
Oh, and when you post here again, it would help many here if you had short paragraphs of around two lines (that would be four lines as composing). Many can't read without lots of white space.
thanks.]
-----------------
There's a lot of homework ahead of you before your appointment on Monday.
I hope you have good personal support and understanding around this.
This also means that you should not give blood. And, if babesia is present, that would be a life-long stipulation. That is just one reason that babesia should be ruled out.
TERMS
co-infections / TBI (tick-borne infections) but TBI can also mean traumatic brain injury so you'll most often see TBD for tick-borne disease.
abx = antibiotics; sx = symptoms (here, I would not put that anywhere else as it may mean different things); tx = treatment or therapy.
(and I hate to do this but you are on a crash course here - if you see the term "ducks" it means a doctor - even an infectious disease specialist - who goes by the IDSA guidelines for lyme + co. (lyme + co = lyme plus co-infections).
But the IDSA "ducks" will call the ILADS' members the same thing.
IDSA - INFECTIOUS DISEASE SOCIETY OF AMERICA.
see Savely article below; and Atty. Gen. of CT's press release. Realize that most IDSA members (nearly all the infectious disease doctors in the U.S.) really have not read beyond what the IDSA says about lyme. They really don't know.
Some know it's more complex but, for some reason, can't move past the old school thought. Oh, and that's what is still taught in medical schools.
ILADS - INTERNATIONAL LYME & ASSOCIATED DISEASES SOCIETY www.ilads.org
All this is somewhere in the NEWBIE LINKS
===============
Please contact your local support group ASAP to see if your doctor has treated any of them and how you might make it the best appointment possible. Or - if there might be another Kaiser doctor whom you should seek out.
=============
Can you order right away this book from Amazon? The Lyme Disease Solution - by Singleton, M.D.
I don't know if you would get it before your appt.,though. And, beware that the next day deliver ad at Amazon is a fee based club.
You might find another source from whom you could get it by the end of the week.
===============
You should also be evaluated for co-infections. If they are present, the treatment protocol would vary. And, mono-therapy is usually not advised by ILADS doctors. You can download the ILADS treatment guidelines here:
www.ilads.org ILADS INTERNATIONAL LYME & ASSOCIATED DISEASES SOCIETY
Also see other articles and presentations. One important article for you is one that discusses MS and lyme:
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:
`` . . .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.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
There are many groups by similar names. Some are ILADS based; others are IDSA based. It's vital to know the distinctions. The previous articles and links, hopefully, have helped in that.
PubMed - for medical abstracts from around the world.
You can search for lyme or borrelia or borreliosis and come up with a different number of abstracts all about the same thing, but perhaps different strains will appear in some abstracts.
Also, know that there are over 300 strains of lyme. The U.S. only tests for one. But, you've got your test (which still a doctor may say is a false positive - so just be aware).
===============
In the meantime, be sure you have none of this in your food plan (even in your chewing gum): aspartame/Nutrasweet/Equal or MSG by any of it's "googlable" names. But you probably already know this. All those are excito-neurotoxins.
Eat healthfully and when you get the Singleton book you can learn more about that. There are other good books, too, it's just that for the first appointment, this one by an MD - and one that is very current - may be a good start.
posted
An other note. Anyone know of any good resources for successful lyme treatment? I know every case is different and different meds.
But i really need to know what i should be looking for when the Docs on Monday suggest meds.
(if they don't decline treatment.. which i can emphasize enough that i think they will do - Im bringing my GF ( soon to be wife in (once my health is treated) to tweak out on them if they decline).
I think your best bet is to get the info from a good llmd or from people on this board.
don't listen to people who have NO CLUE about molecular biology techniques.
Whomever told you the nonsense about the western blot and ELISA is obviously uneducated and has no right to place doubt in your mind.
Listen to your body and trust your instincts. You know yourself better than anyone.
With the right doctor and a good support group (loved ones, good friends and lymenet ) you'll be on the right track to recovery.
I wish you the best.
~Green~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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daise
Unregistered
posted
Hi Halbowitz,
I think all of the above is very good advice, too. I'm sorry you're hurtin'. That causes extra stress. We worry ... "Who do I believe?"
Sounds like money is an issue. There is nothing new about that, for me and for many others here!
Have you applied for SSI from Social Security? That you get in a few months and it's not much every month, but it's something.
Being approved for SSI often gets you state Medicaid!
With state Medicaid, you usually chose your insurance company from a list. At that point, choose wisely for Lyme treatment!
While getting SSI you can also:
1.) Apply for SSDI (Social Security Disability)yourself.
2.) Or get a lawyer to help you get SSDI. You have to decide whether you want to go with a lawyer or not--it's hard to say. However, if you do go with a lawyer you have to do that before you sign one piece of SSDI paperwork with the Social Security Office.
SSDI lawyers are free--their fee is paid by Social Security.
Have you applied for foodstamps?
If your situation is otherwise, perhaps this link will help, to Prescription Hope:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
That link is to the IDSA guidelines.
If you are using the IDSA guidelines - is that because
* that is the guideline you choose for yourself?
* or it's because it the guideline you know your doctors will choose?
I hope you can download the ILADS treatment guidelines at www.ilads.org
You might want to study both sets, know their similarities and their differences. I assure you that the ILADS set of guidelines has far more serious research behind it.
However, if you have a doctor who is member of the IDSA, there is usually no changing of their mind - no matter how much research you have with you.
On the other hand, sometimes, an IDSA member doctor is aware and helpful.
This is where your local support group is vital - to provide patient experiences.
========================
You mentioned you had been in the hospital for pericarditis. I hope they treated you well. If something else comes up that seems unrelated, this sort of search may help:
Yes, I agree, go to the ILADS website and click "Treatment Guidelines." Print both the ILADS Guidelines (which offer help and hope!) and beneath that, Dr. B's 33 pages of tips for 2005.
posted
I didn't look at the link above (yet) so this might be relevant.
But i do make a good amount of money. So i doubt i can qualify for anything.
But i live by myself, so with the mortgage, credit card bills, food, and all of that, it doesn't leave me with much at months end.
Does anyone think its a good idea to see the LLMDi had an appt with before Kaiser? I think it would be best to see him after Kaiser.
That way kaiser can hopefully prescribe me the expensive meds and i can tell him what they prescribed and he can augment it.
Only problem is that he is a resident this month, then taking a month off, then hopefully starting his 'own' practice come August.
So, its either this Thursday or a month 1/2.
Plus the fact that he is a resident kinda scares me. And he like to use Muscle Reflex (or something else sounding kinda like that) to determine infections. Which im not sure sounds right to me.
Posts: 47 | From Denver | Registered: Jul 2006
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posted
"If you are using the IDSA guidelines - is that because
* that is the guideline you choose for yourself?
* or it's because it the guideline you know your doctors will choose?"
Its just cos its what i found online that suggested treatments. I will research what you had suggested. Thanks deeply.
I really need to go in there Monday with documentation and suggestions.
Posts: 47 | From Denver | Registered: Jul 2006
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Dawnee
Unregistered
posted
Someone got to it before me... but I wanted to relieve you of your HIV fear also. The test is not the same as the one for HIV.
You do, however, have a positive Lyme Disease test. (did I miss it... where is the result for band 31???) I would skip the ID doctor for sure... you will find out soon enough that Lyme Disease is surrounded by politics and most regular doctors are downright snide and hateful about dxing Lyme Disease and treating it properly.
You need to go to the Finding A Doctor forum and find out the closest LLMD to you and get in to be seen. You need to get your blood sent to a lab called IgeneX for more accurate testing.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You said: " . . . I really need to go in there Monday with documentation and suggestions. . . ."
--
Even still, I had 3 postive western blots for lyme, babesia and a erhlichia. I'd been ill for years with CFS, etc.
My neurotologist told me to get tested for lyme. Elisa was negative; doctor would order no other tests. My naturopathic physician ordered the labs through Igenex and I paid a lab to draw & ship and paid myself for the tests (thanks to my Dad).
But, as the tests were done behind my doctor's back, she was not thrilled. She would not even consider lyme as - existing.
I had all tests and the ILADS materials - and my doctor still said she thought it was all psychological (because I had startle seizures - she though I was just wrapped too tight). I tried to hand the materials to my doctor and she waved me away and put her hands in her pockets.
She also repeated: "We don't have lyme in this state . . . " She didn't bother to even find out that I've hiked in about 40 states and that we did, in fact, have lyme in my state.
Colorado doctors have also used that line. So, be prepared.
Don't expect them to honor you for your wanting to get the best treatment you can. No matter how you approach this, it could be an uncomfortable encounter. Don't expect too much. Just find out who's smart and who can help and who can't.
You can study up so you can make good decisions.
You will not be able to toss a bunch of stuff at them. Pick the very best of the best.
Then, prior to your appointment, quiet yourself and proceed from your heart, grounded in dignity and respect.
One more article and I'm out of your face - promise.
This (below) may be of help, at least in understanding the importance of prevention and early treatment (even if delayed, good treatment now can change your life).
========================
This explains a lot about chronic borrelia, etc. (with thanks to Sojourner for posting this at CpnHelp.org recently)
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
ELISA is a TYPE of test. WESTERN BLOT is a TYPE of test.
It is like you telling someone you have a CAR and then someone else telling you that they heard that Acura's will kill you.
Do you assume you have an Acura when you know you have a Mercedes?
You said you had the ELISA and WB for Lyme. Unless you had an ELISA and WB for HIV, then your positive ELISA and WB results are Lyme results, not HIV results.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hal...you're stressing out over getting documentation and treatment guidelines etc...it's just going to be a waste of time if you go back to that same inf dis doc. it's obvious by what he has already said to you he is not going to give you ilads tx...whether he is lyme literate or not.
i'm sorry to be the bearer of bad news...but better you know before you stress and waste time and money on him.
one way or the other you need to get tx if your symptoms are neuro and you have had it a few years.
there is some financial help and there are some herbal protocols...but by far the best thing is to get yourself to a real llmd. i tell people it's worth refinancing their house to get the best tx they can in the beginning. i guess you're young and probably don't own a house but maybe you can sell something or maybe your family will help out.
i'm pretty sure everyone here will say get to a good llmd asap. at least that is the best thing. if you can't -then just keep reading and searching and educating yourself...but as you already have seen. it is very complicated...very stress ful and hard for someone who doesn't have a lot of background knowledge and who's brain may be compromised.
good luck. lots of people here will try to help...but i really think you need good tx soon.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Halbowitz,
What exactly did your doctor tell you that freaked you out?
We all share your fear of the HIV test because most infectious disease dudes always throw that in as part of the regime of testing for every disease known to man.
I have had HIV testing because of insurance reasons in addition to the lyme tests.
What really freaked me out is when I checked my results, HIV negative of course, my T CD3+, TCD4+ (natural killer cells) cells were low, but my total WBC was within range. Well, everything you research online when you mention the body's CD3 & C4+ cells, it refers to HIV. And that scared me out of my wits.
My LLMD said that lyme can absolutely make your lymphocyte counts lower. (also autoimmune problems).
SO it was a great relief to know that my low absolute lymphocytes count was due my body failing to fight off something: as in lyme.
The best thing for you to do is see a LLMD in your area. If there are none, pick the closest one that is really good and make the trip. Infections disease doctors only do the minimum because of the CDC guidelines, and I assume because of the liability of mis-diganosing and mis-treating someone who may/may not have lyme.
A doctor in NJ was put in jail because she was treating a person for lyme and she actually had ALS. So, I guess they go by the guidelines, and they suck. Plus lyme is extremely hard to diagnose as there is no specific "lyme" test. Lyme is a clinical diagnosis, which means the test is unreliable, so they treat you according to your symptoms. And we know lyme is the "great imitator."
GOOD LUCK and hope you feel better! Posts: 1127 | From atlantic city, nj | Registered: May 2008
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"You do, however, have a positive Lyme Disease test. (did I miss it... where is the result for band 31???)"
Got me. Thats the whole list from the test.
"hal...you're stressing out over getting documentation and treatment guidelines etc...it's just going to be a waste of time if you go back to that same inf dis doc"
Not that it might work out any better but im going to a dif ID doctor. I actually saw her before but either i didnt tell her i thought I had lyme or it never crossed her mind. Think she just tested me for HIV.
Right now shes my only choice. The other ID doc i saw, whom refused to send my blood to Ignex and to look at a list of symptoms i brought in, had an earlier appointment available.
But I told the lady "There is no way im seeing that guy. He pretty much told i don't have what i just tested positive for."
In a 'needle in a haystack' question i asked the lady making appointments if anyone there had ever treated lyme.
And she said (regarding the lady i made the appt with) "Oh, she got her degree in Chicago. Im sure shes dealt with it."
And then my hope dropped even more of getting good care through Kaiser. I don't believe getting your degree in Chicago makes you Lyme literate.
Like i said earlier, i do have an appt with a doc who is LLMD. He said he was in the ILADS directory at one time but his boss didn't like him treating lyme and forced him to remove it.
He's also only a resident until the end of the month.
Then 'gone' until he hopefully starts his 'own' practice in August+
The odd thing, to me, is that he like to use blood work as well as biofeedback to choose what meds to use.
So, the combination of only being a resident and using biofeedback makes me unsure.
Although i guess he had lyme himself as a child.
As im sure is true that the wrong treatment could be as damaging as anything else.
How much water does it hold if someone says you react well to Cipro, and they are going to prescribe that based on the fact that you muscle-tested for Cipro and Benicar?
MAybe that does make sense. Maybe i dont know enough about Biofeedback. But, again, it makes me unsure.
Anyhow, i do have an appt with that guy on Thursday but i was going to cancel atleast until i see my Kaiser doc on Monday.
Then, after i get thats done i would try and find another LLMD (or just go to the one i listed above), pay for that out of my own pocket, and let them know what Kaiser is or is not treating me with.
This whole thing is really confusing. Getting treatment, then getting good treatment, and follow up treatment, seems like a long shot.
OK, im going to look at all the documentation you all had pointed me too. Time to break out the highlighter.
Posts: 47 | From Denver | Registered: Jul 2006
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posted
"What exactly did your doctor tell you that freaked you out?"
What i think your asking about wasn't from a doctor.
The question i asked (quoted in the original post), i obviously asked in the wrong part of the internet, and got some bad information.
Posts: 47 | From Denver | Registered: Jul 2006
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posted
This whole thing brings a new question to mind.
Assuming i do go see the Kaiser doc. Which im sure i will.
Lets say all the info i read on this disease, the correct treatment, the doc doesnt even come close to doing. BUt for arguments sake, lets say they do prescribe some meds.
Do i refuse the meds and tell them ill come back if need be and pray i can find a LLMD that will see me?
Or do i take the meds they offer and then go look for a LLMD that will see me? If i can find one.
Ive posted before looking for docs here. So far there is only 1. Hes only an hour and a half away. Do-able
But there is no gaurntee he is taking new patients or can see me in any 'good' timeframe.
And if he doesn't work out the next closest one i found was in New Mexico. Not sure how that works out if they have to give me the 2xs a day intravenous feed.
Ughhhh.. this sucks. Im sure you all know that though.
Do i have to pay dues to be a member of this club you have here? haha.. yea, that was a sad joke.
Posts: 47 | From Denver | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
See the infectious disease duck; beg for the maximum treatment he'll give and ask to be treated per the ILADS guidelines. Print 'em out. Be bold!
In the meantime:
Make and TAKE an appt. with an LLMD!! It won't be wasted! No matter if it's a bit of a wait -- it'll be worth it. He'll do and think of things the infectious duck will never do, i.e., look for coinfections, treat you for adequate length of time, switch up meds, etc. An hour and a half drive is a piece o'cake. Go for it. Some people hafta FLY to see an LLMD so you're lucky.
In the meantime, read everything you can lay hands on. Start with the Basics on the ILADS website. Read up on the newbie links. Don't let the ID duck bamboozle you.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I had an appt today with a Doc who treated Lyme. But they turned me away because i already had insurance. Just not any that they took.
Even though i was going to pay cash/credit.
Jeeze, im so sad.
When i made the appt, i told them the story. I had insurance, but would be paying out of pocket.
They didn't say they had any issues with that and gave me an appt.
Now today i go to the appt and they turn me away.
They tell me that since i have insurance with someone else they cant see me, it would be against the law, and that it would be fraud.
I really feel like the world is conspiring against me to never treat this or at least not until it does irreparable damage.
Although I think it already has.
Im in a state, Colorado, who treat the disease like its a myth. I cant even pay out of my own pocket to see a doctor. Im stuck with Kaiser till the end of the year. And my symptoms are bad.
What kind of country do we live in where you cant pay someone cash to look at you because you unknowingly 'sold your soul and wallet' to another health provider?
Unbelievable.
Well, i have an appt with Kaiser on Monday. If they decided not to treat me, want more blood work, or anything like that...
I don't know what im going to do.
Wow. This really sucks.
Posts: 47 | From Denver | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Oh, my. Sorry to hear of such unbelievable experience.
I had a similar experience with Medicare.
I wanted to see a particular specialist and they asked if what insurance I had. I made the mistake of saying "medicare."
The did not accept medicare. I said, "well, I'll be a private pay patient."
They refused the schedule an appointment for me, even though I said I would pay cash up front.
They said it was against the law.
I called back the next day and spoke with someone else and tried to skirt the issue but, somehow, they looked me up on computer after I gave my name and they saw that I had medicare.
Same old "it is against the law for us to see you even if you pay yourself."
Now, I still don't believe them as I can't use the phone to call medicare and their web site is too confusing. But, these doctors just might not have wanted people like me. At my (younger than 65) age, medicare has a certain stigma in some people's eyes. And they made a point of asking my age right off the bat.
I did not know that other insurances had the same ropes attached.
---------
I do hope then, that your Kaiser doctor, may turn out to help if you are stone honest in your desire to read some materials and see if the two of you can work hard to work this out.
Bb first infects dendrite cells (Langerhans cells) and prevents them from displaying class II MHC..which prevents the antigen (protein) specific CD 4 T cell activation.
Follow? I hope so because this is Bb's biggest threat to us...the fact that it has a PKCD inhibitor.
Now let's talk about how to really activate PKCD..
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
quote:Originally posted by daise:
2.) Or get a lawyer to help you get SSDI.
You have to decide whether you want to go with a lawyer or not--it's hard to say.
However, if you do go with a lawyer you have to do that before you sign one piece of SSDI paperwork with the Social Security Office.
SSDI lawyers are free--their fee is paid by Social Security.
daise/all...
a clarification; ssdi lawyers are NOT FREE!
if they win your case, they are allowed up to $5300 or 25% of your 1st year of BACK PAYMENT.
SSDI/DDS will pay the lawyer their $5300 DEDUCTED 1ST FROM YOUR MONEY; then send you the balance in 1 of more payments to your bank's checking/savings acct.
if lawyers do NOT win; they don't get that amount of money.
they DO RECEIVE money for misc. expenses:
postage for overnight mailings to DDS of important documents; copying; if they pay out of pocket for your drs. medical records, etc.,
In my yellow pages, under "attorneys" (they spelled it wrong) and in the back of that section for specialties, there are several ads by the SSDI lawyers.
They say right in their display ads "Social Security Disability Claims."
But here's something new: "Fee subject to Social Security approval." This is something new, a direct about-face from last year.
Saw the infec diseas doc and she kept driving home the fact that although i do have Lyme that might not be my problem.
Anyhow, they did a PICC on me and ill be taking ceftriaxone, intravenously, 2g a day, for a month.
Which is good. From what ive read thats a good start if you have late stage Lyme with nero symptoms like me.
Then i saw my nero and he said its probably 60%-70% chance that all my problems are lyme related but still thinks i may have MS.
Throwing out random numbers, i guess he did 5 MS tests on me, 4 came back neg, and one came back positive. But not positive for MS (as he said there is no definitive test for that) but for residual evidence of inflammation.
But he said he that can also be caused by infections, and/or, MS.
And the last test he did on my spinal fluid was specifically for Lyme and he hadn't got that one back yet.
He never had to order that one before so he wasnt so sure on the time frame.
Then he basically said he wants to get some more MRI's over the coming years.
And if the Lyme test comes back neg or i develope new symptoms he may start leaning back towards MS.
So, good news on the meds. Bad news on them driving home the fact I still may have MS. Id rather have Lyme.
I guess time will tell.
Oh, but the odd thing is the Infec Disease doc didn't schedule me for a follow up to see how it was working out for me.
Weird. I think at least. I think im going to email her office and ask if she wants a follow up appt with me.
Posts: 47 | From Denver | Registered: Jul 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I didn't read all the other posts...but none that I know of - LLMD -lyme literate Md takes insurance anyway.
Most of us cannot use our insurance with our Lyme treatment.
See an LLMD outside of Kaiser and start treatment.
My son is w/Kaiser - I didn't even ask if they'd treat, I knew they wouldn't. So we had to get him to our LLMD and pay cash and he is getting well.
Kaiser can kiss off, I have had nothing but problems with them for years..finally we wil be free of Kaiser forever in the next 30 days. Thank God!
posted
Kaiser conveniently missed my diagnosis not that they did not have many chances to get it right. I no longer have Kaiser.
I know someone who lives in Calif. who has Kaiser. He was first told by Kaiser he had Lyme disease and then they changed his diagnosis to MS. It makes me wonder about Kaiser not that I was not already wondering about them.
Another person I know who had Kaiser in Calif. did get a LD diagnosis. Some how she even did get an Igenex test but all they did was give her doxy for months and she was getting worse instead of better.
I told her to get a real LLMD but I do not think she wanted to spend the money. She and her Kaiser family MD both thought that since her Igenex test was negative for coinfections that she did not have any. I tried to tell her it was a clinical diagnosis.
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I just got a call from the Infect Disease doc who, more or less, seemed shocked.
She said
"I don't now if you talked to your Neuro yet, but your Lower Lumbar punch test for lyme came back and its positive"
"I know he was telling you that he thought you still might have MS and he was waiting for this test to come back"
"Ive never seen this before" (referring to the positive Lumbar Lyme test)
"... its interesting that your test is positive but your symptoms predate all of this"
(that last part was verbatim)
Its not 'interesting' to me, haha.
Ive had symptoms for 8 years as far sure.. and the more I think about it, potentially, 20 years.
Anyhow, that weird thing is i kinda enjoyed her admitting she was surprised by the results.
After ive been telling the Docs for 2-3 years i think I have lyme it was kinda nice to have someone admit i was right and that they were 'shocked'.
Now the luke warm news... Ive been on the ceftriaxone for 1 week now and no change in my symptoms.
Although they aren't horribly bad right now to begin with.
Hoping this week is better.
Oh, and i also talked to the Infec Disease doc about a follow up after the month.
And she said she didn't think it was necessary as i can be positive for the antibody for years after treatment.
So retesting me didn't make allot of sense to her.
Then she basically said i would have to talk to the Neuro about it.
So it seems to me that at the end of my treatment, Kaiser will be done treating the disease. Maybe the symptoms, but thats about it.
I am going to see another doc, out of the Kaiser system, in Aug. (hopefully)
So, if they refuse to treat me anymore it wont be the end of the world.
Posts: 47 | From Denver | Registered: Jul 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Is the other doc you are seeing in August an LLMD? It would be worth your while to see an LLMD for proper treatment. HAve you been to the ILADS website and printedd and read Burrascano's Guielines? Please do that and you will see this requires someone with experience in treatimg chronic lyme long term.
I well meaning but inexperienced doc can cost you years of pain and suffering. Go with an LLMD that has the knowledge to help you feel better.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Yea, the doc is LLMD. He's opening up a new practice in mid august. Thats why i have to wait.
Although, i guess it will be semi-good timing as ill be recently off my current meds and we can see the early results of that.
Posts: 47 | From Denver | Registered: Jul 2006
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