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Posted by brian123 (Member # 14534) on :
 
Well, I just met with my primary. He did not

dismiss Lyme. He took into account all my valid

concerns. He did order a Lyme test be done, but,

I guess the way he or the Veterans Hospital does

it is the order an ELISA first. He wanted to see

the results from that first before going further

or ordering a WESTERN BLOT. He also advised me

that numerous times they have FALSE NEGATIVES.

So, this atleast told me he has an open mind to

this and is aware. He also stated that most of

teh diagnosis is Clinical and that the blood tests

"back up the diagnosis". I was with him on that.


I inquired at the lab where they mailed the

tests and they told me "WEST ROXBURY"???


I assume that may be a VA hospital. I did ask the

Primary if I should spend the 400 bucks and get a

test from IGENEX. He said not to waste the money

and lets see this test first. He did state that


just because it could come back negative, does


not mean he will not proceed to the next step,

whether its more tests and a Lyme diagnosis or

that it could be something else. He sent me to

the lab for a full series of blood work and an

ELISA test and also is having a Rhumatoidologist

contact me.


He does seem to be very thorough.

What do you guys think?
 

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Posted by Tracy9 (Member # 7521) on :
 
West Roxbury is in Massachusetts. I think there is a big VA hospital there.

Well, it's kind of frustrating he didn't order both tests at the same time, but his take on Lyme sounds pretty good.
 

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Posted by adamm (Member # 11910) on :
 
Well, he knows more about it than most--I'd still get an ILADS

LLMD if I were you, though.
 

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Posted by TerryK (Member # 8552) on :
 
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
 

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Posted by Robin123 (Member # 9197) on :
 
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.
 

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Posted by Michelle M (Member # 7200) on :
 
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.

Read up on ELISA's here.

Also, if you have lyme you need a doctor knowledgeable about coinfections. Now, that is RARE!!!

Best of luck.

Michelle
 

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Posted by robi (Member # 5547) on :
 
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
 

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Posted by tailz (Member # 10014) on :
 
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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Posted by tdtid (Member # 10276) on :
 
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
 

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Posted by Geneal (Member # 10375) on :
 
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
 

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Posted by knshore (Member # 13451) on :
 
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.
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Geneal:

An Igenex WB only costs 190.00 for tests 188 and 189. (IgG and IgM)

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Exactly what I was going to point out. Well worth the money if that pathetic ELISA comes back negative, like they usually do.
 

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Posted by hshbmom (Member # 9478) on :
 
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.
 

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Posted by roro (Member # 13383) on :
 

quote:

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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.

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quote:

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Originally posted by roro:

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

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BOY IS THAT TRUE!!!
 

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Posted by Meg (Member # 22) on :
 
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.
 

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Posted by roro (Member # 13383) on :
 
do i sound cynical enough???
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by roro:
do i sound cynical enough???

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Oh yeah!! But we do it out of concern for brian!!!
 

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Posted by TerryK (Member # 8552) on :
 
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
 

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Posted by Lymetoo (Member # 743) on :
 
Where is Brian???
 

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