I got into the hematologist today. Due to our major snowstorm, he had cancellations and got me in.
Honestly, I have most certainly come upon the most inadequate, condescending, incompetent, uncaring Hematologist in the State of Connecticut if not the World.
I get there. He chastises me for being late. They called at 3:15 to tell me I could get in for 3:45. It's a half hour drive. I wasn't dressed and we are in the midst of a 14 inch snowstorm. I got there by 4:00 pm.
He had me expose my arm and asked me to point to where the blood clot is. Now I'm not freaking doctor, but if they had to do a two hour ultrasound to find the blood clot, what makes this guy think I can point it out????
I pulled out my notes and said "it is my understanding that it is in the cephalic vein of the left arm, mid distal segment."
He said, "yes I know, I have all the reports here."
He then went on to ask why I was there, I explained that since the radiologist had called my Lyme doctor on FRIDAY about this report, she had been calling me daily telling me I needed to be admitted to the hospital for immediate treatment of the DVT. She has repeatedly used the phrases "this can kill you" and "you can die".... but that the ER doc spoke to the radiologist and said it was safe to wait and follow up with the hematologist outpatient.
OK...so here comes the condescending "you know there is no such thing as Chronic Lyme Disease" speech, all the research shows, blah blah blah...I said "well actually the trend is changing and more and more doctors are realizing there IS chronic lyme, and there is plenty of research to show that."
So he SNICKERS at me and says, "YES it is changing, to more and more people NOT believing in it. But I'm not here to argue that" (GOOD BECAUSE I AM ABOUT TO FREAKING KICK YOU).
So next he says he will work me up for a clotting disorder but he is sure I dont' have that, anyone can get a blood clot from a central line.
I said, "Actually I DO have a clotting disorder and I've known this for years, ever since I had five miscarriages and they told me so."
(MAYBE YOU SHOULD HAVE TAKEN THE TEN MINUTES YOU JUST SPENT SPOUTING OFF AND LAUGHING AT ME ABOUT THERE BEING NO SUCH THING AS CHRONIC LYME DISEASE AND ASKED ME IF I HAD EVER BEEN DIAGNOSED WITH A CLOTTING DISORDER....I MEAN, THAT'S WHY I'M HERE, DIMWIT.)
So then he seems to actually be listening for the first time, and orders 13 vials of blood to evaluate my clotting disorder.
THANK YOU, finally there is something that made this worth my trip in a snowstorm.
He then tells me he will give me Coumadin but that it interferes with every single medication that I am on so (again smirkingly) says it's really not going to make any sense.
He asks me, "Don't you feel awful being on all these medications?"
I answer, "Not nearly as awful as I feel being off them."
He says he will see me again in four weeks when all the blood test results are in. In the meantime, he gives me THREE DAYS of Warfarin, but tells me I need to be treated for 4-6 weeks with it to dissolve this clot.
He says he is not going to treat me for this. He will send off this information to my PCP so he can treat me, and again reminds me it interferes with all the other medications I am on.
Of course, I had already SPOKEN to my PCP about this on Friday after the two frantic messages from my LLD and asked him to admit me to the hospital. He said no, he doesn't do PICC lines, doesn't know anything about this, doesn't treat blood clots, I need to go to ER to be admitted and be followed by a ..... HEMATOLOGIST.
So I went to CVS to fill the Warfarin. I filled a cart with 90 percent off Valentines Candy and have eaten two boxes already. (Okay, each box only had three pieces in it,but they were only 15 cents each!)
I'm not happy.
Gotta go, hubby got HIS PICC line put in today. The hospital REFUSED to give him his first infusion there as our doctor ordering it is not on staff. WHAT????? I just got one there a month ago and they gave me my first infusion.
So I'm about to infuse him.
I infused myself about an hour ago; my heplock was shot. I couldnt' get any blood return but jammed the line in the vein as much as I could and infused anyway. Now my arm is pretty swollen, but when I then pulled out the heplock, it was bloody and seemed to come out of the vein, and the vein bled a lot.
OH, did I mention this? Dr. HemaHole also said if I do indeed have a clotting disorder, which we've already established back in the day at the fertility clinic that I do, I can forget any kind of line....they will always clot.
So I'm stuck with the ne'er do well heplocks then for the duration.....months....to a year. So far I've had little luck getting any of them to last the week they are supposed to last...which has meant a trip to the hospital a half hour away every few days to get a new one.
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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feelfit
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posted
All I can say is:
YIKES!! Posts: 3975 | From usa | Registered: Aug 2007
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Ocean
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posted
Oh goodness Tracy!
I think you DID find the worst Hemotologist in the world.
So Dr. HemaHole as you put it delicately, said he knows NOTHING about PICC lines, yet said you can never have a central line due to your clotting disorder?
Are you sure he knows what he is talking about??
Geesh, what a jerk, if he is part of a clinic or something, can you write a letter to the head about his behavior. He is a Hemotologist and doesn't know a THING about PICC's, BUT he is a specialist in KNOWING that Chronic Lyme doesn't exist.
Now that's interesting.
Sorry you found such a winner. I hope your husband's PICC works out OK.
Tracy9
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posted
No, my PCP says he knows nothing about PICC lines and wouldn't treat the clot or anything PICC line related. In fact he wouldn't even call in Blake's first dose of Rocephin to the hospital today; they wouldnt take the prescription order from our LLD who is not on staff there, so we just did it at home, even though the first dose is supposed to be in a supervised environment.
The Hematologist just said he won't treat me. He said I need 4-6 weeks of Coumadin but that "he doesn't follow that." What I read indicates I need more like 6-12 months due to my clotting disorder.
I don't know what to do. I just read this article and it leads me to believe that the clot can easily move from the Cephalic vein into one where it is more dangerous.
I guess I'll email all the info to my LLD and hope she guides me tomorrow. I'm not sure I shouldn't be inpatient getting a few days of heparin IV....not to mention I think I infused into the same vein where the clot is for two weeks, no one said not to.
UGH. Not so sure that 5 mg of Coumadin is enough for this situation.
Here's the article I read that concerned me about the clot easily moving to a more dangerous vein:
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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posted
Tracy, I'm confused. Did LLD ask you if you had a clotting
disorder and/or cover the issue before ordering a picc? I would
hope she did, which would mean she didn't think clotting would
be a problem. This is counter to Dr.Hemahole's counsel of which
you've decided to employ selective application?
Many of us have experienced similar arrogance and its close
cousin ignorance when dealing with doctors. It's very frustrating.
Just remember such a manner does not discount an underlying
desire to help. (Look at me! )
Also good to think about the Buddhist idea that if you get angry,
then the other side wins. (But sometimes when you gotta vent,
you gotta vent! )
Posts: 76 | From tolland county, ct | Registered: Jul 2008
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Tracy9
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Ahhhh, I'm not angry. No, she didn't ask me if I had a clotting disorder. I've seen three LLDs re: IV antibiotics and not one of them asked.
I would have told them, but I had NO IDEA clotting and lines were related. Plus, I was told about the clotting disorder by a fertility specialist years ago following 5 miscarriages; really never applied it to anything else in my mind.
I would have forgotten all about it if the ER hadn't asked me. It's something I was told about and believed only related to pregnancy.
As far as Dr. Hemahole, I'm not applying ANY application of his counsel. I filled the Warfarin and took two as prescribed, then sent my LLD a very long email asking her WHAT DO I DO NOW?????
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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Tracy9
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Oh, also to anwer your question Lymeric, here's what I've been told about clots and PICC lines:
1. Hematologist: It's very common
2. ER doctor: It's very rare to get a blood clot so soon after having a PICC line placed, I highly doubt you have a blood clot (this was the day after the line was placed, he came back and said he was wrong and I DID have a clot.)
3. LLD: It is very unusual to get a blood clot so soon after having a line placed.
So, I guess I have had several different takes on the issue. I reread your post and think you were asking about this. Of course all of this was Post PICC Clot.
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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Tracy9
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And lastly, here is the email I sent my LLD, hoping to get some guidance tomorrow.
Bless you to anyone who has actually taken the time to read all this and respond; I know it's incredibly long.
Here's the email I just sent to my LLD:
Hello Dr. L,
Thank you for following up so diligently on my blood clot issue. I am sorry we didn't connect by phone. I have been having an awful herx and sleeping most of the time since Friday, so I didn't even get your first message until Friday night.
I will try and recap for you what my follow up has been, and need your help on where to go from here.
1. I had the ultrasound as you know last Thursday, and the Radiologist told me that although the clot was still there, it was NOT an acute issue, I could go home and follow up with the Hematology appt I had for Wed, March 4th.
2. After I got your message, I called my Primary Care Doctor, Dr. *** and spoke with him. I explained I had two differing opinions from you and the Radiologist, and he said I should go to the ER for admission. He had immediate access to the report and read it while on the phone with me. However, he was not willing to call the hospital though he is on staff there and ensure my admission, because he said he "doesn't do PICC lines and doesn't know how to treat this."
3. I called the ER Friday night. The ER doctor reviewed my reports and spoke directly to the Radiologist. He said NOT to come down, I would NOT be admitted, and reiterated what the radiologist said about it not being an emergency.
4. I got your additional messages. On Sunday I called the oncall doctor at the Marino Center. Though you had given me your cell phone number and email address, I could find neither. The oncall doctor was very nice but said she had no way to get hold of you, and didn't know what to tell me to do.
5. Today, Monday, I called the Hematologist and they were able to get me in today instead of Wednesday. The Hematologist gave me a prescription for 5 mg of Warfarin per day for 3 days. He said he does not follow this, and won't follow me. He referred me back to my PCP, Dr. ***, who already told me he doesn't do this and I need to be followed by a hematologist.
6. The hematologist seemed very unprofessional and I feel very insecure about his treatment of me. He had me push up my sleeve and then asked me where the blood clot was. I was perplexed, how am I supposed to know where it was? If it takes a 2 hour ultrasound to find it, what would make him think I can point it out?
7. He referred to the report which described where it was, in the Cephalic vein of the left arm, distal area, then said he was sure I didn't have a clotting disorder, that blood clots are not uncommon with PICC lines. I told him I'd been told in the past after five miscarriages I DID have a clotting disorder.
8. The good news is he took 13 vials of blood and is doing a full workup for clotting disorders. He said it will take 4 weeks to get the results.
9. He said the Warfarin interacts with just about every medication I am on, and basically shrugged his shoulders and said he had no idea how I was going to be treated with all the other meds I'm on.
10. He was very vocal about not believing in Chronic Lyme and gave me quite a lecture on it. He openly disapproved of the medications I am on.
11. He said if I have a clotting disorder I simply cannot have any kind of line because it will always clot, and long term Warfarin isn't feasible, with the meds I am on.
12. I researched a little bit since this has made me feel so uncomfortable, and am attaching an article that I interpret to mean a blood clot in the cephalic vein resulting from a PICC line has a good chance of moving into another vein, leaving a 5-10% risk of a Pulmonary Embolism. I know you are the doctor, and I have tried to follow your advice and follow up on getting this taken care of from every angle.
I feel like I am at square one. I have three days of Warfarin with no follow up, and after researching I am concerned that I should be in the hospital for a few days on IV Heparin or however they dissolve these clots as you have said.
Please. please advise me on what to do. I will gladly present to the ER and perhaps they will admit me if you call them and request they do so. I could go to a different hospital, perhaps UMass Medical Center in Worcester which is a bit closer to you and a larger medical center, or Harford Hospital , another major medical center.
Today I also spoke to the Radiology Tech who agreed I should be in the hospital, and said your judgment would be more important than the Radiologists. He also said you actually SPOKE to the Radiologist, which I did not realize.
If you spoke to him, did he say he didn't think I needed admission when you thought I did? Because it was the Radiologist who blocked my admission Friday night.
I will wait to hear from you on how to proceed, but I do think I will need you to call whatever hospital I go to in order to get me admitted. I know that you don't need to follow me, and am aware all hospitals have Hospitalists now that follow inpatients. I just don't think I am going to get the right care without a call from you.
I am very sorry this has gone on for several days. I tried but have not been able to get anywhere with this. I really thought the hematologist today would be the answer, but I feel it was just another dead end.
Please advise; if you don't reach me by phone I am probably sleeping and don't hear it, or I have to go to Rockville Hospital tomorrow to get another Heplock placed. If you email me I will most definitely get it quickly, as I lay in bed on the computer a lot!!!
Thank you very much for all the wonderful care you have given me, and for being so caring and following up so much. I really hope I can get this taken care of; I really dont' want to take any chances with this blood clot....and who knows if it has moved since the ultrasound last Thursday. I am still having lots of pain in my arm and clavicle area now too.
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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Tracy9
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Haven't done those yet but THANKS SO MUCH for reminding me.
I'm hoping anyone will point out things I may be missing here.
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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TerryK
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Tracy, I think you are handling this all very well. You have done as much as a patient could do given the runaround that you've been getting.
I'm so sorry you had to deal with an arrogant, ignorant hematologist. I have a hard time holding my tongue when dealing with doctors who have an attitude such as his. Sounds like you did a good job of holding your own while stifling your urge to smack him around.
Hopefully your LLD will have some good advice. Can you call your PCP and ask for his advice too or do you think he's washed his hands of it?
Please ask your LLD if you should be giving yourself IV infusions at all right now. Do whatever you have to do to get proper treatment even if you have to go to another hospital.
I can't beleive what a fiasco this has been for you. My thoughts are with you for a safe and quick resolution.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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pamoisondelune
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Some people take nattokinase instead of coumadin. It's an alternative with a good reputation.
Here's a quote from a blood clot forum, where they had nattokinase wars, when i used to read it:
I think Nattokinase is great!!! I believe it has saved me from many clots, and has made my Post Thrombotic Syndrome almost disappear. I don't take coumadin.
Tracy9
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posted
Thanks, I'll check out the blood clot forum, and I will be calling my PCP today too to see if he is going to follow this. The Hematologist was going to send everything over to him.
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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Tracy9
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No word yet from Dr. L., but just spoke with my PCP's office and that went well.
They WILL follow me on the Coumadin, and have access (all in the same network) via computer to all the tests I had done yesterday. The nurse said they will tell me when I need blood draws, and it could be every two days, once a week, or once a month, depending how I do. She said it must be done in the morning and then they adjust your meds by the afternoon when I get the results.
I asked her to order them as a "home draw." The hospital comes out and draws if you are homebound. I told her I can get there if I am up to it but if I am called for a blood draw on a very bad day, it could be almost impossible for me to get to the hospital.
So that part of my immediate treatment is covered at least; again if Dr. L feels this is adequate treatment of this blood clot.....since I have no trust in the hematologist's opinion.
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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seekhelp
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posted
This is going to sound crazy, but consuming a significan amount of hot pepper powders thins blood considerably. I have a friend who lowered his Coumadin by 40% due to this! It's been proven with lab work for him. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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Thanks for keeping us updated. Very glad to know you are being closely followed by someone.
I wonder if you could get a second opinion by another hematologist? Still feel a bit worried that this treatment is not aggressive enough + you need to get some long term plan in place so that you can get the treatment you need for lyme with the least risk and trauma given your clotting disorder. Seems like the current hematologist would not be all that concerned with on-going lyme treatment issues given his attitude.
Maybe your LLD knows of a lyme friendly hematologist?
Please keep us posted when you can.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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seekhelp
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I'm sorry Tracy about the issues you're having. Why are so many docs egotistical jerks when they hear someone is treating for Lyme? Geez.. It sickens me so much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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oxygenbabe
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Well I've been following your case. I guess I feel, you are taking too many risks with yourself.
Let's assume doctors are going to be rushed, inadequate and make mistakes. I feel you have been very lucky not to have a worse outcome, waiting for a month with the clot in your arm and swelling and pain.
Secondly, you talk about problems with the heplock and shoving it in, in spite of leaking blood and stuff.
Tracy, your life is more important than insisting on IV therapy at this time.
It would be good to work with a *really* good ND who understands clotting disorders. The country's expert on nattokinase is Martin Milner, N.D. Look him up. Coumadin will not dissolve the clot per-se. Nattokinase and other approaches can but this must be done under supervision with bleeding time tests to monitor.
There may be a way that working with a doctor experienced with nattokinase and lumbrokinase etc, you would be able to get your blood into a state where clotting was not as likely or risky.
As it is, you have been very very lucky. I am glad for that but please take more care with yourself.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Tracy, sorry to hear about that Hematologist. If you are going to start on warfarin therapy, you really, really need somebody to keep a close eye on you, at least until your INR is stable.
Warfarin does react with many medications, both prescription and non-script. It functions by limiting the use of vitamin K in clotting factors, so you need to maintain a steady diet of certain foods as well.
Please be careful - warfarin is nothing to fool around with, too large of a dose can cause cerebral hemorrhage (stroke). Do you know what your clotting disorder was found to be previously (APS, Factor V Leiden, etc)?
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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I'm new to Lymenet, but I'm in Mass., too, and have seen my share of M******* docs. This guy wins an award.
What an unbelievable nightmare (except it's all too believable, knowing that I and another Lyme friend have gone through with our docs).
I guess I have a clotting disorder too -- found out when my LLMD ordered an ISAC panel from Hemex labs to check for "hypercoag state." She said this could be due to chronic infection (Lyme, etc.), but it's also common in people with CFIDS (which I also have). I'm not on a PICC line (yet) but both LLMDs I consulted with, who also know about CFIDS and MCS (multiple chemical sensitivity, which I also have) said I should not go on Heparin or Cumadin because they're dangerous for MCSers.
So, I've been on Nattokinase for the last two years. I don't know whether it's helped or not, but it hasn't hurt.
There are many other natural/herbal blood thinners, but I can't remember what any of them are because I'm allergic to all of them (MCS issue, not Lyme-related). Hopefully someone will post a list or you can find it on a web search.
It's very upsetting to hear about what you're going through because three people in my life have had PEs, all with different consequences (one -- my mother -- came through it OK). So, you're definitely right that this is not something to mess around with.
I think you are doing a TERRIFIC job advocating for yourself while also remaining calm in a ghastly situation. I really hope your LLMD comes through for you. Goodness knows, you need a break. You're in my thoughts.
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
I have to say I am in agreement with Oxygenbabe about the PICC line and trying to get more antibiotics into that, with all the problems you are having. If it were me, I'd be going so far as to get that thing out entirely.
posted
Yes, Tracy's description of heplock technique made me uneasy and worried; about creating new clots for one thing.
Posts: 76 | From tolland county, ct | Registered: Jul 2008
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I know you want to continue your IV antibiotics, but I have to agree with some of the other posters. The bloodclot and treatment of that has to take priority right now.
I don't know exactly which meds you are on and how those interact with the Coumadin. It might be a good idea to call your pharmacist and have them explain exactly how the meds interact. I think this is something you really need to know.
Hopefully you can get this issue resolved quickly.
Take care.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sammy
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Wow Tracy, you've had such a rough time lately. I know what it's like being passed from doctor to doctor, no on knows what to do, no one wants to take responsibility. It's so frustrating. I completely feel for you here.
I just hope that in the end of all this mess you will learn more about your specific clotting problem, how to manage it, AND find an effective combo of meds to treat your Lyme and Co.
Take care Tracy, you are in my thoughts and prayers. Big hug to you too:)
Posts: 5237 | From here | Registered: Nov 2007
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Tracy9
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posted
Thanks for everyone's help. My LLD contacted me today and said if need be, she wants me off all abx for two months until this clot is taken care of. Again, she said this clot can kill me, and takes priority over everything else.
It is going to take four weeks to get the results of my blood tests. My PCP will follow me for the Coumadin in the meantime. I am having a home blood draw (which they set up) Thursday morning,and they will call me Thursday afternoon to advise me on how to adjust my dosage if necessary.
My LLD is contacting Dr. Horowitz to consult with him about the Coumadin and all the other meds I'm taking and I'm waiting for her to get back to me on that, and where to go from here.
Meanwhile, I didn't feel good today and didn't have enough energy to get to the hospital and get a new heplock, so no Rocephin for me today. My arm is pretty swollen where the heplock area was anyway.
I feel my head is spinning because this whole darned blood clot thing has been so confusing. When I first got it, they pulled the PICC right away in the ER, and said it was superficial, not to worry, it would just go away.
Three weeks later I mentioned it when getting my weekly heplock, pointed out my arm was still swollen and painful, and asked how long it is supposed to take for this to go away.
They promptly called Radiology, who said I needed another ultrasound if it was still symptomatic.
A week later I got the ultrasound, and that's when all this began, last Friday. Differing opinions, not sure how to proceed, lots of confusion.
I'm trying to read up on Coumadin and drug interactions but as the hematologist said, it DOES look like it basically interacts with everything under the sun.
I'll wait to hear from LLD.....ugh....if I have to go off all abx I am going go down hard and fast. This won't be good.
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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Tracy9
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Oh, and just to be sure I'm getting this all right, here is the email I got this morning from Dr. L. (English is not her first language.) Please share any feedback, thanks again.)
"I am glad you wrote back! it is a very unusual circumstances. I did speak with a radiologist who originally called me himself to tell me you have a DVT and that means you need to be anticoagulated asap.
That is why such urgency on my part. and yes - it can move and created anything from pulmonary embolism to a stroke,etc... so... we do need to start anticoagulation. since I am not a specialist in this, we need to find sounds like a better hematologist - asap
and continue this anticoagulation - and if it means stopping all antibiotics for a month or two - that is fine too, since this condition can virtually kill....
I will email Dr Horowitz to see if he has any imput to this - but on your part - please, call a hematologist affiliated with a major cente - someone who knows what he is talking about and let's see him asap!!!!!
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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Tracy9
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Thanks for everyone's help. My LLD contacted me today and said if need be, she wants me off all abx for two months until this clot is taken care of. Again, she said this clot can kill me, and takes priority over everything else.
It is going to take four weeks to get the results of my blood tests. My PCP will follow me for the Coumadin in the meantime. I am having a home blood draw (which they set up) Thursday morning,and they will call me Thursday afternoon to advise me on how to adjust my dosage if necessary.
My LLD is contacting Dr. Horowitz to consult with him about the Coumadin and all the other meds I'm taking and I'm waiting for her to get back to me on that, and where to go from here.
Meanwhile, I didn't feel good today and didn't have enough energy to get to the hospital and get a new heplock, so no Rocephin for me today. My arm is pretty swollen where the heplock area was anyway.
I feel my head is spinning because this whole darned blood clot thing has been so confusing. When I first got it, they pulled the PICC right away in the ER, and said it was superficial, not to worry, it would just go away.
Three weeks later I mentioned it when getting my weekly heplock, pointed out my arm was still swollen and painful, and asked how long it is supposed to take for this to go away.
They promptly called Radiology, who said I needed another ultrasound if it was still symptomatic.
A week later I got the ultrasound, and that's when all this began, last Friday. Differing opinions, not sure how to proceed, lots of confusion.
I'm trying to read up on Coumadin and drug interactions but as the hematologist said, it DOES look like it basically interacts with everything under the sun.
I did find another hematologist, my son's teacher from last year was treated by her for Babesiosis. I am trying to get a hold of her to get scheduled with her. He says she saved his life.
I'll wait to hear from LLD.....ugh....if I have to go off all abx I am going go down hard and fast. This won't be good.
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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Tracy9
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Oh, and just to be sure I'm getting this all right, here is the email I got this morning from Dr. L. (English is not her first language.) Please share any feedback, thanks again.)
"I am glad you wrote back! it is a very unusual circumstances. I did speak with a radiologist who originally called me himself to tell me you have a DVT and that means you need to be anticoagulated asap.
That is why such urgency on my part. and yes - it can move and created anything from pulmonary embolism to a stroke,etc... so... we do need to start anticoagulation. since I am not a specialist in this, we need to find sounds like a better hematologist - asap
and continue this anticoagulation - and if it means stopping all antibiotics for a month or two - that is fine too, since this condition can virtually kill....
I will email Dr Horowitz to see if he has any imput to this - but on your part - please, call a hematologist affiliated with a major cente - someone who knows what he is talking about and let's see him asap!!!!!
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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Tracy, I do not necessarily think you will have have to discontinue abx or any other med. Consistency is really the most important thing in both diet and meds. If your MD agrees, you will probably need to watch your INR closely when you alter meds (start, stop or change dose).
For most Lyme patients the most important one to watch for is fluconazole (diflucan). Others that are probably less risk are probenicid, rifampin and Bactrim/Septra.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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Tracy9
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Yes, I agree with you.....I went to drugs.com and checked them all, and it seems like they will all be okay as long as I have my INR monitored closely.
My LLD did say in her latest reply that the blood clot had changed from the original clot, which I hadn't understood. It is much larger, and now a DVT and completely occluding the vein.
I guess I'm okay on the Coumadin for now; I have my first INR test tomorrow morning.
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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TerryK
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Seems like a bad idea to try to push more meds into the vein if it is completly blocked by a blood clot. Couldn't that possibly dislodge the clot, especially as it starts to disolve?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
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Yes, absolutely that is my thought...I'm think I'm lucky that I had two weeks of heplocks/IV Rocephin in that arm and didn't do that; hopefully wasn't going into that vein.
I've been getting my heplocks and infusions in the other arm. I missed my Rocephin yesterday and today, too exhausted to go to hospital.
I did schedule with a new hematologist for next Tuesday, see my PCP tomorrow and LLD on Friday. Tomorrow I also will go to hospital to get a new heplock put in,
I hope missing two days of Rocephin won't set me back, but then I've been bedridden for a couple weeks now so I can't go much further down.
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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TerryK
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Glad you are set up to see a new hematologist. Very glad you aren't getting the IV in the same arm.
I know seeing all these doctors really wears a person out. Hang in there. You've been through so much over the past month what with your brother and the clot but you will get through it and things will get better. Keep in touch.
Thinking about you and sending big hugs, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy, I have been following your case through somebody else who has kept me updated. Don't think that I have forgotten about you.
I am so glad that it sounds like you are getting things taken care of. I am sorry about all of the ignorance you have been exposed to in the medical establishment as of late. It really upsets me.
Anyway, everybody has said everything that I could ever want to say but just know that I am thinking of you and wanting to know that you are ok every day, ok? Posts: 588 | From Rhode Island | Registered: Jun 2006
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It's Lisa from Healing Well. I had a little giggle from your posts here as you know we are going through the exact same thing you are with the clotting disorder. Only difference is that we didn't do the line first, had to go to our "Dr. Hemahole". What a sketch she is -- a character right out of Harry Potter.
Well, she does not want Marissa to have the PICC line for fear of a blood clot. Also, she does not want to put her on blood thinners.
The most amusing thing is that she had lyme disease herself, but when I brought up the fact that Marissa was herxing she didn't know what I was talking about. I caught her and the nurse practitioner making a strange face at each other. Come on . . . if you had the disease AND you are a doctor, you don't know what herxing is? So I defined it for them. That went over well!
Marissa has been approved for IV Rocephin, now we are waiting for her schedule. We will need to do an IV EVERYDAY for this treatment. How exhausting for her. I called the insurance company to let them know that I hadn't heard about her scheduling yet and was told that her doctor and the "hemahole" need to speak because my doctor still wants her to get the line. I DON'T want her getting it -- I don't care if they tell me that the clot you get in your arm isn't life threatening, etc., I am not going to take that chance. A clot is a clot and it doesn't belong any where in the body.
I wish you luck with your new hematologist. Hopefully he or she will be more understanding. I'm happy we don't have to return to ours.
Hope to hear you are feeling better soon. Write if you can -- send you an email earlier this week.
Lisa
Posts: 51 | From Connecticut | Registered: Sep 2008
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Tracy9
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Sorry I haven't written back; but why can;t she get a heplock like I have? At least that only needs to be changed once a week. It would be insane to stick her every day!!!
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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METALLlC BLUE
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Let me know who ends up being friendly to your cause Tracy. We need a Hematologist listed. I hope things get better for you.
--
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Tracy -- yes, you are right. If I can get someone to schedule this, hopefully for Tuesday, that will be my first question. Seven days a week is too much. Don't think she will have much to work with after a couple of week of IVs.
Lisa
Posts: 51 | From Connecticut | Registered: Sep 2008
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METALLlC BLUE
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Tracy, I can do an additional update On Dr. L if you wish to convey the amount of care provided during these emergency issues. Let me know via PM. Emergency responsiveness seems to be a critical issue for many patients..
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
Frequent Contributor (1K+ posts)
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posted
Mike I cannot say enough about Dr. L, please feel free to add that she is VERY responsive in emergencies and gives people her personal email address and cell phone number.
The Hematologist is Dr. Burroughs in Enfield, CT. She diagnosed Babesia in my son's teacher last year when no one could figure out what was wrong with him.
Geneal, I just finished ten months or so of Bicillin so it wasn't cutting it for me. I really need the IVs.
Right now my main concern is what are the spots on my lungs, gallbladder, liver and spleen and whether or not I have cancer....that has taken over any thoughts of Lyme treatment. I had a CT scan with contrast yesterday of the liver and spleen and ultrasound of the abdomen the day before. My chest CT scan with contrast shows two "ground glass nodules", so I am very worried about Lymphoma or lung cancer right now.
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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METALLlC BLUE
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Tracy, would you like to give a patient report on the Hematologist? Feel free to PM me with it, and I'll do the rest.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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