posted
I am wondering if anyone here has ever been refered to a blood specialist.
My llmd put me on heparin at my last visit, based on my blood being soooo thick they could barely draw any. (not based on blood test)
I went to my pcp here at home and he wanted me to have a hypercoagulation test done first before I started my heparin shots. I did the test and then started the shots.
I got a call today, one week later. That my bloodwork was in and looked "normal". The pcp said I should continue on with the heparin as directed by my llmd and that he recommend me see a blood specialist.
I received a copy of my test results and it clearly stated that I had no thrombosis (sp?) but suggested low levels in a few other areas. One being RBC.
I could give you all the exact results if that would help.
My question is.. Number one, what do I need a blood specialist for?? and do you all think that it is necessary or will it be similar to seeing an ID duck??
I really dont want to waste my time or money or want to have someone make me feel like I have nothing wrong, etc.. But I honestly do not know if it is necessary or not. I didnt even know that there were blood specialist before.
Any advise or suggestions here.
By the way, the name of the blood doctors office is HH Cancer Center. (kinda scary)
Thanks for your input.
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
My quack wants me to see one. I am not sure of the specific reasons. Melissa
Posts: 3905 | From USA | Registered: May 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had the same thing happen. i just started taking wobenzyme.
another referral to another doctor who didn't believe in lyme..
not worth it, but this just my opinion....others may differ.........
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hi Sal, I was sent to the hemotologist for my low iron. He is a hemotologist/oncolgist, and my PCP made a point to say 'now don't freak out.....' about the oncology part.
Silly me, I thought a hemotologist was a blood specialist.
He said he thought that my low iron was from my 'monthly menses'.
When I asked if it could be my active babesia, (red blood cell parasite that can cause hemolysis) he said 'I think maybe you need a specialists for that'
(hemotologist? blood specialists? Ohhhh a red blood cell specialists? Infectious disease?) It was frusterating for me, but caused a turning point. That is when I decided to go out of state for a LLMD.
In his defense, he did get me an iron IV, which helped, and has been open to learning about babesia......
I still see him on a yearly basis, and take him a short article each time about TBA infections.
Von
[ 22. July 2007, 01:18 PM: Message edited by: von ]
Posts: 258 | From Washington State | Registered: Nov 2005
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posted
I was referred to a hematologist for low WBC and RBC. He was planning on doing a bone marrow biopsy I refused. We talked about Lyme and I remember saying cant you look at my blood under the microscope and tell me if I have erlichiosis? (I had very low WBC for years) or Babesiosis.
He suggested (nicely) that I get see a therapist. PS. 3 months later I convinced my 2nd LLMD to test me and the erlichiosis was positive. By that time my rbc had gone back up.
In my case It seemed that the hematologist was only interested in finding a pre -cancerous condition which he told me was untreatable anyway. So why go through the pain of a bone marrow test I asked. Who needs therapy?
[ 21. July 2007, 09:09 PM: Message edited by: MarsyNY ]
Posts: 465 | From New York, NY | Registered: Aug 2005
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ByronSBell 2007
Unregistered
posted
I saw one of the better hemotologist in the country and he basically did a huge battery of tests (17 viles of blood) and only found that I have hypercoagulaton, low iron, and some other weird thing... someties the tests they run are not that good, so be careful.
Sometimes your hypercoagulation results can be in the normal range but can still be off and may need heparin. I just take my b-vitamins and multivitamins which help with it some. Asprin wil do nothing for it and make other things worse
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posted
randi what is wobenzyme? and what did they say you needed that for?
Von, yeah my pcp told me the same thing about not freaking out. Obviously HE KNEW IT WOULD!! Doesnt low RBC mean you are low in iron?
Yeah, Im with you Marsy. Unless by no other choice would I do bone marrow testing either. I heard that is very painful.
Byron; I wasnt sure about why I would continue with the heparin if my bloodwork said I didnt have hypercoagulation. The results said positive non thrombosis. But did also say to run other test if other conditions were present. So, I would have to agree with that. I seen how thick my blood was.. it didnt even run back in forth in the vile when they did finally draw some. That was scary.
I dont know if it would really make a difference to go see a hematologist (i learned a new word) especially seeing I am already on heparin and that would obviously been thining my blood. Maybe I will go to the first appt and see what they say, and/or what type of test they want to do. I will just keep in mind that they are probaly similar to uneducated doctors regarding lyme and not go into too much detail with them about that. I dont want them to say something stupid and **** me off! ya know how they can be.
Posts: 73 | From phoenix, az | Registered: May 2005
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posted
Dear Sal, You did right getting copies of your lab work. If you are like me, you are tired. So I am sorry to say welcome to the disease where you get to diagnose your self.
Get copies of every lab work. Look up everything that falls out of the normal range, regardless if your PCP is concerned about it or not.
I use answers.com as a starting point. Even for lab abbreviations.
RBC can be related to anemia, and there are many kinds.
On standard blood tests, they rarely check ferritin level or B12. Read about it and ask your PCP to order.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
wobenzyme is a systemic enzyme supposed to be good for hypercoagulation.
do an email and you'll find tons of information on it.
i buy mine at vitamin shoppe.
it's supposed to help with blood issues and stuff.
sorry, can't explain in technical terms....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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1Bitten2XShy
Unregistered
posted
Randi-
I too take Wobenzym-N. I have taken it since May. It helps alot with the pains/inflammation in my joints.
You do have to watch as it is a natural blood thinner, they do say tell your Dr. and stop 3-4 days before any type of surgery.
I take anywhere from 16-20 daily,, on an empty stomach. 45 mins before food or 2 hrs after food, otherwise it gets all used up digesting the food since it is systemic.
Look online, buying in the local shops is MUCHO bucks for it. I buy from a certain place, and only pay $ 98- for 800 tablets!!
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1Bitten2XShy
Unregistered
posted
PS
My LLMD put me on the Wobenzym-N. For the inflammation in the joints. I can tell if I miss a day without taking it.
My mother has terrible arthritis, and I told her about this. She went into her local herb shop and the owner could not tell her enough how great this stuff was. I am sure it works for some, not all. But maybe we can be one of the lucky ones!
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Sandra, I have been to 2 hematologists.
The first one to do testing for raised porphyria levels on a test my LLMD did. He never did do the testing and wanted to treat Hep C and thought Lyme was treated with steroids. What a jerk!
However, the second was a pleasure. I went to her to test for clotting problems. I was a bleeder as a young child. I was going for surgery and the surgeon wanted to know what he was dealing with before touching me.
I tested alright though may still have a slight defect in one of my clotting factors. I was cleared for surgery. She told me if I ever find myself bleeding or bruising more than usual to call and come right back and she will rerun the tests. She was a pleasure. She didn't talk down or disbelieve TBIs and explained and discussed everything throughly. I'd go back if need be.
I think the benefit to seeing a hematologist would be to see if there is a pre existing reason for the coagulation issue and to monitor your blood levels.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I agree that you should see a hematologist. Lyme can affect the blood just as it does other body systems. My daughter saw a hematologist after she had clotting problems with her picc line. He ran a series of tests for clotting factors, and she did show a protein S deficiency. It is supposed to be a hereditary condition, but my husbnd and I both tested negative. Her LLMD says that it is an "acquired" condtition in this case, caused by chronic infection. There have been studies on this. The hematologist wanted to put her on warfarin. The LLMD wanted lovenox. We tried the warfarin first, but ran into problems with other meds interfering with it. Tried the lovenox, and it worked like a charm. Now, she maintains with lumbrokinase, a natural blood thinner.
It can be a very serious problem if you aren't aware of it, My daughter did have a pulmonary embolism. It was tiny, and it moved through on its own, but it was very frightening. Also, blood clotting problems can be dangerous for women during pregnancy. It can lead to miscarriages.
Her hematologist also tried to do the bone marrow biopsy because her platelets were so low, but we declined. Platelets went back up as infection level went down. When infection intensifies, platelets go back down. Ugh!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Hi- interesting to see this post. I see a hemo once a week & I still think my ITP (low platelets) is associated with LD. Ever since being really sick, platelets are lower and lower and I have to treat in hospital every 2 weeks... Hey Lymeout- is your daughter now back to normal? Do her counts still go low? By any chance, did she test postive for Babs? Thx, Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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Our llmd referred my daughter to a hematologist because of her lab results. I think mainly because of the very low B-12 levels. Her platelets and RBC were also low.
I think our llmd is very thorough and wants to make sure he is not missing anything. Because he is out of state, we did not go to the hematologist he uses (I now wish we had). We tried making an appt with someone local.
All of the hematologists in this area are also oncologists, and apparently mainly do oncology. Some are not taking any new patients. When we found someone who would take a referral from an out of state doctor they had not heard of, they just wanted the lab results faxed. One look and they said "you're not anemic, no appointment necessary".
I would not rule out all hematologists, but do exactly what you are doing, ask for info and maybe you will find one who is open minded!
I second the advice to search the meaning to all your lab results online. We found that many on the results could be attributed to co-infections. Also found that some of the co-infections and the treatments can do things to your blood very similar to what chemo does.
Good Luck!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
Natalie, My daughter has not tested positive for babs but has been treated for it. She tested positive for Bb, bartonella and erlichia. I think that any chronic infection can mess with the blood though. If you google hypercoagulation, you will probably get some good information from a lab website as well as a doctor who has pioneered in this area. I am afraid to mention the sites because of the restrictions here, but I think you can find them. If not, let me know and I will PM them.
Her platelets still go low when infections intensify. There is almost a direct correlation.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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especially seeing I am already on heparin and that would obviously been thining my blood. Maybe I will go to the first appt and see what they say, and/or what type of test they want to do. I will just keep in mind that they are probaly similar to uneducated doctors regarding lyme and not go into too much detail with them about that. I dont want them to say something stupid and **** me off! ya know how they can be.
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