I want to make this as short as possible, and hope to get some insight.
After 6 weeks of IV Roceph and ONE day before I was to have the PICC line removed I developed blood clots in my leg and was in the hospital for 11 days over the holidays. I am now on Coumadin and my levels are not staying up.
While I was in the hospital my LLMD had me on Ceftin 1000mgs a day for the 11 days, but that affects the Coumidin levels, so right now I am off the Ceftin and only on Valtrex for EBV.
For months and months my left leg has been getting numb. Over the years I have had many MRI"S for MS. Three brain lesions, but read out as unsignificant. Also spinal MRI's negative. My brain fog and cognitive thinking is whacked !
Could the clots be from the PICC line and what other alternatives do I have ?
For the past year I have been on every antibiotic and Mepron for babesia.
My new LLMD thinks I have a false positive and has not been treating me for babesia for 4 months.
I was on Mepron and Zithro for 5 months along with Art, and my babesia still shows postive.
The leg and brain symptoms bother me the most and cannot sleep thinking I have MS or ALS.
I am white and pasty with dark circles.
I confused as to a new avenue. My doc drew another babesia and I will see him on Tues, to discuss further treatment with that.
Feel like I am slipping away a little more each day but am aggravated because I don't know what to do !
I am so open to any suggestions. Geez.........it took me a half hour to type this!
Posted by gopats (Member # 5218) on :
Sorry about the blood clots. Glad you caught them in time. I wouldn't worry about ALS at this point. How long have you been sick? I was diagnosed with ALS originally - almost 10 years ago. I have gained strength and muscle mass and that diagnosis was reversed. MS and Lyme seem so closely related.
What is the plan of action by your LLMD and your other docs?
I have to say I've been going through a bad spell for a couple of months and the doc gave me some things to try to get through it. But I used to feel horrible 24/7 and was bed ridden for YEARS.
Posted by typhoon_sheri (Member # 10325) on :
No plan of action, just continue the blood thinner.... Looking forward to some answers..... Thanx.....
Posted by Jellybelly (Member # 7142) on :
Something your doctor may not have been expecting or looking for is hypercoagulation. The blood clots you have had are one form, but there is another form that people with chronic infections like us deal with.
It is caused by a buildup of fibrin due to the chronic nature of this illness. If you are even prone to clotting just a little bit, excessive fibrin can fire up the clotting cascade.
I have dealt with this and there are some who feel that as many as 75% or more of us deal with this form of hypercoagulation.
Whenever I am being treated with ABX, the hypercoagulation problem gets worse. Like you, I used to be very pasty white, and I had bluish undertones. I was fortunate that I never had any clots, or at least any that I was aware of.
Hypercoagulation can cause a whole battery of problems, and really should be dealt with as a part of the healing process.
Here is a link to a discussion that was had this summer on hypercoagulation due to excessive fibrin and how it is treated.
Sherri: Dr. Z doesn't treat hypocoagulation but is not against taking something for it. He mentioned the Lumbrokinaise one time when I was there. He seemed pretty open about it.Ask him about it when you go there on the 16th. I think I'll mention it again next time I'm there. It may help me since I seem to be going backwards (mostly due to stress)
Posted by bigmamma (Member # 7181) on :
Babesia is known to cause hypercoagulation.
You may have immune system activated clotting due to your infections, but having a PICC definitely increases your risk as well. It is a known complication.
Also consider a genetic predisposition for clotting. There are many inherited conditions that cause clotting.
Posted by typhoon_sheri (Member # 10325) on :
Thanks for your time and suggestions...... Every bit of information is appreciated !!!!!!
Molly....let me know how you doing after you see Dr. Z. !!!!!!!!!!!