13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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adamm
Unregistered
posted
Well, he knows more about it than most--I'd still get an ILADS
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
It's good to know that you got at least somewhere with the VA. They laughed at my brother when he mentioned lyme and refused testing of any kind so at least you are getting a test albeit a useless test.
My understanding is that most LLMD's don't bother with an ELISA because they miss something like 70% of the lyme cases. My ELISA was indeterminate but my doctor (non LLMD) ordered an IgeneX WB at the same time as he ordered the ELISA. Most non LLMD's order an ELISA first and no other tests so I'll hold my judgement on your doctor until he actually orders a useful test.
BTW - IgeneX is a better lab for a number of reasons, one being that they test for 2 strains rather than one and they are better able to detect those who have chronic long term lyme infections.
The VA sent my brother to a rheumatologist but he was no help at all. The VA has been dismal when it comes to helping my brother. I'm sure he has lyme since I do and we have similar symptoms as do all my siblings and my mother.
I pray that you get better results than my brother but if they won't go further with testing or clinical diagnosis, be prepared to go to an LLMD and be fully evaluated for lyme AND co-infections.
If you are disabled and get Social Security you may be able to get that insurance and find an LLMD who will take it. It does cost money though and by the time you are done can be quite expensive for the insurance and the prescription insurance. Before you go that route though you will want to find an LLMD who actually takes social security and sees new patients on Social Security because that is not easy if you live in most parts of the U.S..
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I understand it's rare for an ELISA to come back positive. I had a positive Western blot through Igenex, and then a rheumatologist sent out for an ELISA and it came back negative. The second line on the ELISA sheet said a negative result does not necessarily rule out Lyme disease.
I believe Igenex is the best suited to pick up infection. But even then, two people here who I know with Lyme did not test positive even tho they have it, and are being treated clinically.
Posts: 13171 | From San Francisco | Registered: May 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, he sounds more hopeful than most.
However, I would AVOID going to a rheumatologist if possible. They're notoriously anti-lyme.
Most doctors have no idea how tragically BAD the ELISA test is. As other posters have mentioned, LLMD's won't even use it. Some have been really lucky and gotten a positive ELISA. But over time the odds go down drastically.
Also, if you have lyme you need a doctor knowledgeable about coinfections. Now, that is RARE!!!
Best of luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Sounds like a nice guy. I know a lot of nice docs that could not help like an EXPERIENCED LLMD can help. I ditto "stay away from the rheumatolgist."
Do you want to be the one figuring this out or have the help of a doc that has treated hundreds of other lyme cases?
LLMD is my vote.
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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tailz
Unregistered
posted
The fact that he is referring you to a rheumatologist, along with the fact that he's waiting for an Elisa to pick up Lyme before doing anything else, negates everything good you said about him. Also, did he test you for any coinfections, or is he awaiting a positive Lyme first to even consider those?
I don't give any doc an inch today unless he earns it.
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I too agree that your doctor sounds a lot more accepting than the doctors I had encountered when trying to find out what was wrong with me.
With that said, I also agree that when we are discussing our health, a specialist is pretty important. If I had heart problems, I'd go to a cardiologist, if I had cancer, I'd go to an oncologist, so it makes since that I would go to a specialist for lyme as well.
I noticed that you are from Maine. If somewhere along the line, you decide to go the path of an LLMD, drop me a P.M. My LLMD is from Maine and I highly recommend him.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Brian,
An Igenex WB only costs 190.00 for tests 188 and 189. (IgG and IgM)
It may seem like a lot of money, but I always ask myself
Is my health (or sanity) worth it?
BTW, my husband had a positive Elisa Via Quest.
However, was not CDC positive on the Western Blot from Igenex.
Darn. I was so hoping to count him to make our Parish endemic.
I don't know about the rhuemie. Don't they just hit you with steroids?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I think that's great that he even considered it! To me, that's a BIG deal! My PCP thinks Lyme is "very RARE!"
I know ELISA isn't very accurate, but at least he is ordering tests for you. Lots won't even consider it. So, that is a good thing.
I think he'd laugh at me if I asked him about Lyme. I do agree though, that you should pursue an LLMD. You PCP may be a good person to still have though, so he can be your, well, PCP. I think it's important to have one, in case you need him for something non Lyme related.
Posts: 215 | From Student | Registered: Oct 2007
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quote:Originally posted by hshbmom: I'm sorry Brian, but if your doctor truly believed what he told you about testing, he would have prescribed antibiotics immediately.
He's waiting to decide what to do based on test results.
Get a LLMD and save your health, time, and money.
I agree wholeheartedly. even if he is remotely considering treating you IF the tests come back positive,
he will consult with an infectious disease dr and the next time you see him he will totally change his tune and be anti-lyme
then he will send you around to a gazillion specialists and do a bunch of worthless invasive expensive tests.
then when the tests all come back with nothing, they will refer you to a psychiatrist and tell you its all due to stress, anxiety or all in your head
trust me on this one, i have been to 50+ drs in the last 3 years and wasted a lot of valuable time.
even with symptoms like fever, sweats, cranial nerve palsy, carditis, and every single symptoms on the list I still was told it was stress or just old age (I am 43)
get to an LLMD and get on treatment ASAP. even if a dr does give you anything it will only be 30 days of doxy. a LLMD will know which co-infections you have and need to be treated for
Posts: 615 | From maryland | Registered: Oct 2007
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posted
In my opinion, doing the worthless Elisa is all the confirmation to him that he go no farther, no matter how hard he tells you he's there for you.
quote:Originally posted by roro: do i sound cynical enough???
Oh yeah!! But we do it out of concern for brian!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I don't know about your situation Brian but my brother is on VA disability and has VA insurance and no other insurance. Having the money to fly out of State (we have no LLMD's here) and pay to see an LLMD and pay for all the tests and all the medication is simply out of the question. There is no money for it.
That said, I agree with others, an LLMD is the way to go if there is any way possible for you to manage it. The other option is as I mentioned before about getting SS disability medical insurance. Even with that coverage, treatment is expensive and not doable for some people.
Some people have to make due with what they have because there is simply no way to come up with the many thousands of dollars that it costs to get treatment throught an LLMD.
I hope that's not your situation Brian and I really hope you can see an LLMD but if not, do whatever you can to get whatever help you can from whoever is willing.
I also agree with others, your doctors approach does not seem hopeful. AND the fact is, most non-LLMD's do not know how to deal with lyme or the co-infections appropriately. If you are stuck dealing with this on your own, your best bet is to educate yourself as much as possible and make a plan...
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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