Ok, Ive got a problem that just popped up and Im curious as to what everyone here would do.
My LLMD who has been treating me the past couple months told me that my iron level was too high. He showed my wife and I some test results and said that they were 2-3x higher then he likes for lyme patients. I had a phlebotomy done that same day and was told to have another one done in 2 weeks.
Since I need to have blood drawn for the phlebotomy, I took the prescription for that procedure to my PCP in order to have them do the blood draw. They said fine, if, I could show them test results that prove I need to have it done.
I had my PCP call up my LLMD and my LLMD faxed down the test results. My PCP looked at the test results and said that I dont have high iron, Im within the normal range.
So now what?
Ive put in a call to my LLMD to ask what level I was at, and what level Im supposed to be at. Then I can callback my PCP to let then know what they said.
If the PCP doesnt agree with it, then what do I do?
My gutt says to have the blood drawn anyway, but, where do I get that done? I dont qualify for a free clinic apptmt, and Im not about to go to the Red Cross and donate blood knowing I have lyme...
I guess I could always drive back up to the LLMD and have them do the blood draw...but thats more money out of pocket, gas, and time for a long trip vs the local HMO doing it for a low co pay...
What would you do?...
ps: My PCP also questioned if I was having an IV for the neuro lyme, and I said no, Im using my LLMDs protocol which is the same as Dr.Bs from ILADS...
Geez, why cant doctors get along...!!
Im about ready to drop my PCP out of the loop and do everything lyme related on my own...argh...
Posted by hurtingramma (Member # 7770) on :
Why is you iron too high? Do you by any chance have hemochromotosis? My brother has that. He used to have the blood drawn by a local Dr., but now he goes to the Red Cross and they just throw it out as they can't use it. I'm sure they would do the same for you with LD.
I hear ya about Dr.'s getting along. Between the PCP, LLMD, gyno and hematologist, I spend half my time explaining things from one to the other. The other three don't always agree with my LLMD, but I'll trust his judgement over the other three any day!
Posted by Wimenin (Member # 15294) on :
Not sure why my iron was high. Im just going by what my LLMD.
The sad part is that Im not asking for expensive procedures for my PCP to approve via my LLMD. Im talkinga about taking blood and disposing of it.
I was going to call up the Red Cross, but not sure how to politely ask if they can draw my blood and dispose of it because of LD (Bb).
Any other thoughts??
Posted by granniela (Member # 17134) on :
Since my LLMD is in another state I have used independent labs to do blood draws. It's been hassle free and closer to home for me.
There's a list of labs in my insurance provider directory under "ancillary providers". Check out yours if you have insurance.
Another stray thought--hospitals have labs if the Red Cross can't help.
Take care and don't let 'em get to you! Grannie
Posted by tdtid (Member # 10276) on :
I have a bit of brain fog going on, so if I have misread this scenario, please forgive me.
First, I understand your frustration regarding our PCP's not agreeing with the protocols of our LLMD's, but that's not your question. I was just making a comment.
As far as getting the blood drawn, would it be possible for your LLMD to write up the orders and then you get it done locally?
I know that my LLMD is in another state and although he would take some blood in his office, he told me he would write up an order to have some taken at a local Labcorp for something else.
I just wonder if you could get past all of this by having it done locally under your LLMD's orders.
Cathy
Posted by Wimenin (Member # 15294) on :
Thats actually what happened. My out of area LLMD wrote the procedure order up and I took it to my PCP. The PCP is balking at doing the phlebotomy (and likely bloot test to follow), since he doesnt agree with my LLMD that my iron level is too high. LLMD says its 2-3x too high. PCP says its within standard ranges.
Im now trying to contact the American Red Cross and some local free clinics to see about a blood draw. But my family makes too much money and since we have insurace, the free clinics wont accept me.
What the hell good is a HMO and insurance if they wont do anything for you? Make too much for the free clinic. The HMO wont do the services. So the only result is a long drive back to my LLMD.
Its just frustrating....
Posted by Wimenin (Member # 15294) on :
American Red cross...negative...they wont provide that service.
So, either my PCP approves the blood draws, or, its another long drive to my LLMD to have it done there..
Drs are sooo like little kids...they're always right, never wrong, wont admit if they dont know something, and dont play well with others...
Posted by Lymetoo (Member # 743) on :
Can you get a copy of the blood test that showed the iron was too high??
Maybe your PCP would be willing to test you for hemochromotosis?? or is that the test you had?
yes. My wife and I requested all records from the LLMD, including tests, so we had it for our files. I never saw what the LLMD faxed the PCP, so I dont know what numbers they're both talking about. Im still waiting for a callback from my LLMDs office to discuss the test results.
I have a hard time believing that one dr would say high, one would say normal, but when it comes to lyme, and hmo drs, everything is possible...
Posted by Peedie (Member # 15355) on :
Your LLMD needs to provide information for your PCP regarding a "range" used to dx the higher than normal level. OR - Your LLMD's office can draw blood for you. However if you are going to your PCP and going through insurance - understand your PCP needs a legitimate reason for this dx. It needs to be HER dx. The insurance company could refuse the claim and question your PCP's diagnostic policy. You don't want to get the insurance company to start refusing tests and proceedures for you or the put your PCP in that position. Just provide the criteria your PCP needs and it should be okay. You might consider giving your PCP a copy of the LLMD seminar for MDs coming up in San Francisco with an $800.00 grant in October. Maybe your PCP would be willing to learn more? www.lymedisease.org/calda/educational_grants.html Good Luck
Posted by Lymetoo (Member # 743) on :
You know, different labs may have different criteria. The criteria should be stated on the test result.
Posted by Wimenin (Member # 15294) on :
Good stuff.. thanks for the advice. Im trying to provide my pcp with all the stuff he requests in order to allow the blood draws to happen. Its a delicate balance of keeping both drs involved...with the ultimate goal always being that my health comes first, regardless of what drs think.
Its interesting you mentioned that seminar. My pcp questioned the tx protocol I was following, and I told him I was following my llmds advice which was a direct protocol of DrBs.. I can sent him a link to Dr.Bs pamphlet. So Im trying to educate him.
We'll see what the two places say in coming days. If all else fails, next week Ill take the drive.
Posted by seibertneurolyme (Member # 6416) on :
Have you tried your local hospital? Their lab would probably do the blood draw since you have orders from an M.D. With regular insurance this should work, but maybe not for an HMO.
As you have learned the hard way -- always keep your own set of medical records. Once you give copies to the PCP according to HIPPA he can't give you a copy if the records came from some other doc -- so you have to go back to the original doc again to get the records.
Good luck.
Bea Seibert
Bea Seibert
Posted by Wimenin (Member # 15294) on :
Ok, I think Ive got it fixed...
I got a phone message from my LLMDs office. They said that my iron level was in the 150-160 range. Standard ranges go from 20-320. They prefer my level be closer to the 20-40 range because higher iron makes the liver work harder. Because of all the meds Im on, the liver is already working hard enough, so they want the level reduced to make it easier for the body to heal.
I then called my PCP and talked to their nurse. I relayed the same information. The nurse said that typically anything about 120 they consider getting high. She wrote everything down, and said that the orders were already approved by my pcp and entered into the system, so I should be able to get the procedures done there as scheduled.
My LLMDs office did say if the pcps wouldnt do it, they would do the blood draws as well. But its sounds like that wont be necessary now.
I guess at least I know everyone is paying attention to the test results...