posted
Hello, I'm new,I am a Vet and have been going in circles with this for over fours years with them alone. And still have no answers what I have.
I could go into my symptoms with you but to make it easier, I'll just say I match everything on the lists you can possably find for lyme.
With the exception of hair falling out.I finally got the Neuro to check for lyme by doing a wastern blott IgG, he told me it wouldn't be nessesary for the IgM part of it.
Because I have had this for so long now the IgM part is only for the begginning stages of Lyme. I don't really agree with him on that,especially when reading about lyme.
But at least I got him to do the test, finally after four years he agreed to do it he said, just to settle my mind about it.Nice of him......
I really don't trust the V.A. medical care system and not sure if they will do it in house or through a outside lab. But I have a feeling that even if it showes pos.
I wont get told about it either.Or even know the reading's of it. Or even if it will be done correctly. The V.A. uses alot of Interns and medical students So accuracy my play a big role with the results.
I have been told I had everything from ALS to Whippels desiese, Alpha-betlical...lol...And all the tests show either neg. or not difinative / non specific enough.
So My main question is, If this test shows neg, where will that leave me now? I live in a small town in Iowa, and Doc's here are just not Lyme litterate.
I feel I'm in the late stages of lyme and when I ask doctors around here for a referral to see a lyme specialist they tell me it's not lyme and there is no such thing as chronic lyme.
I reply to them that the mayo clinic says my condition is chronic because it has lasted for over a year and I will not get an appointment from them to be seen because it is there policy to not treat chronic patients.
So what is the medical asertation of Chronic? A diesease or condition that goes untreated or undiagnossed for a period of longer than one year?
It's been over four years for me. So I guess I'm Chronic...Wow...blows me away....
-------------------- I love my Country,But I don't have to love my Gov. Posts: 6 | From Dubuque, Iowa | Registered: Apr 2013
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posted
I'm very sorry you have had to come HERE for help .. since the VA is not helping you. This happens all the time, whether it's the military or the mainstream medical system. Both are pathetic.
I will come back to add a quote from this link regarding the IgG and IgM. Your Dr made a big mistake not running both parts of the test.
I have a list of LLMDs in Iowa and will send that to you. You will have to pay out of pocket like nearly everyone else on this board. Most Drs don't take insurance anyway.
Lyme can go chronic in a matter of months if it is not treated...so.. you are there.
Quoting from the link above:
"One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Do you know about the vets lyme forum? Maybe they can shed some light on your situation with the VA. Have heard it is very hard to get treatment thru them. http://health.groups.yahoo.com/group/MilitaryLyme/
Have you contacted support groups in your region to get doc referrals? Click on support groups line in green menu box left side of this page, then go to your state and nearby states.
You are right about the IgM portion of the western blot. Typically this is said to reflect early disease, but actually in lyme which is relapsing, you can have a positive IgM even in late stage disease. And you can test negative on all tests and still have lyme. Most testing involves looking for antibodies, and chronic cases have sometimes stopped producing them. PCR is not an antibody test but is not very good either. Culture test finds more positives, but not all of them, and rather expensive.
You need a doc who understands this. Did you post in seeking a doctor list on this website?
Posts: 2888 | From USA | Registered: Mar 2004
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I hope you understand that though you may have finally gotten the Dr. to test you for lyme, the problem isn't testing or not testing.
It's the interpretation of the western blot. Almost every Dr. will say negative. You'll still need to see a lyme literate dr. or post your results here.
For instance if you show a 31 or 39, your doc won't understand those are lyme specific. He will tell you negative when it's actually positive.
Best thing to do, is get the results of the tests, and post them here. There's enough experience here to at least give you a good idea if chronic lyme is a probability, which it sounds it is.
Today I will have my first visit with an LLMD, So I'm Off to see the wizzard.....I don't know what to expect, I googled his name and it really has me worried, that I maybe going to the wrong guy here. I hope not,Don't need a wasted trip....Says he a physic. doc. So This my very well be a wasted trip...But,he's the closest one for me. I've had my fiar share of Physic. Doc's, and it was not very pritty or helpful. I'm not depressd, distressed, maybe.
I just wish a person could talk with the LLMD first and talk about things, before you make the trip. when I called to schedule an appointment the receptionist said it's a walk in type of basis. And I was told that he was going to evaluate me first, to see what stage I'm in. That could mean What stage of depression as well, Man I'm really skeptical about this. At least I'm not dealing with the V.A. here, and can walk away if it's not what I'm needing or expecting here.
If in fact I'm seeing the right guy here, I'll assume that he will want to run tests of his own as well. So here goes nothing.......
-------------------- I love my Country,But I don't have to love my Gov. Posts: 6 | From Dubuque, Iowa | Registered: Apr 2013
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Gee, I'm back and confused more now than ever....I never even got to see the guy and I'm not even sure if he is a LLMD.... don't know if this is just part of the game play here or what? But they told me I won't be seeing this guy until june 6 th....
I'm really wondering here because the lady that talked to me just did a kind of physic. eval thing and she started asking me some very specific questions like are you just wanting medication or and it felt as if she was trying to see if I would divulge stuff that I really didn't want to,and in order to protect this guy. I didn't say or mention " I needed to see the LLMD Doc.", I just siad I need to see,Dr. Such and such...
Iv'e got a real concern here,It seemed like they knew why I was there but, didn't ,if that makes sense. This whole thing is so secrative and stand offish you don't know what to say and to who say things too....I just felt that I wasn't going to say too much until I meet this guy and lay it out to him first before things go sour.
I guess the real questions here is did I make a wasted trip and Is this guy for real or not......I kind of got left in the dust here,I even asked the lady if doctor patient confidentiality is applicable here before I state anything spacific. She kind of blew that off and Avoided this subject.
she did how ever make sure, in a very weird way, that I got an appointment to see this guy specifically. And when I got out of the office she was kind of waitting at the door to see me off so to speek. That could just be her kindness and concern but still have to wonder though. That never happened before and the exit was a long way from the office too.
-------------------- I love my Country,But I don't have to love my Gov. Posts: 6 | From Dubuque, Iowa | Registered: Apr 2013
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Man I gotta tell you, it makes ya feel ,Here we go,,,another dead end with this as well. Or dam I just wasted time and money just to go all the way here, and didnt even get seen by the guy I was supposed to..that really makes ya wonder. Really....Anything, a sign, a wink, or simply pull you outside and talk, or slap ya or something that you aren't wasting your time or money here.
Even a simple phone call would be something here.I mean hell they got your phone number and stuff why not use a payphone and do a simple phone call even afterwards. This was really a bad experience for me.
E-mail, would work here too.I feel like I just got sent home with the I just got pumped in the rear with this whole thing.Took the money and ran thing...Even a letter would be nice.....
Now i'm left with , should I stay with this ? or, go somewhere else ? or, give up ?, or just try and live like this and just accept that this is my new normal ? and just try to keep adapting to this as it keeps getting worse ? where will I be in five or ten years with this if I do nothing at all ? Wheel chair bound ? bed ridden ?
Die from it? Sad, really sad....that this whole thing has to be so complicated and go this way.....
-------------------- I love my Country,But I don't have to love my Gov. Posts: 6 | From Dubuque, Iowa | Registered: Apr 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Yes, you need to make sure you are going to the right kind of doc. And one way to do that is to contact support groups, like was already suggested. They will know the docs in your region. You need to put this visit into context, understand the politics of the disease, or none of your doctor experiences will make any sense.
Posts: 2888 | From USA | Registered: Mar 2004
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