I've had abnormal blood counts (WBC and RBC) for the better part of my 4 year lyme journey, but for the past 2 months they have been hovering in the danger zone.
So I am off IV abx AGAIN (i'm a little frustrated...) and scheduled for a bone marrow biopsy first week of April.
I am to be off meds until then, that will be 5 weeks with no abx and I'm terrified. I've been off 2 weeks already and I am relapsing...fast.
But my question is if anyone has had a similar problem with blood counts as a result of lyme or coinfections? And has anyone had a bone marrow biopsy? What can I expect?
My doctors are stumped by this, which isn't comforting
Any input would be greatly appreciated!
~mae
Posted by bettyg (Member # 6147) on :
Mae, sorry to read about this. 3 thoughts come to my mind:
1. do a search for each of these topics separately in the MEDICAL section and those 2 names only in TOPIC LINE vs. entire message for any date and enter.
I know I've read others comment on bone marrow, but search wasn't working right now for me. I think ?? it was lymetoo who had one, but I read so many posts; I could be terribly wrong.
She'll look at the topic, and if it applies to her, you'll get a response from her on this post. She's extremely active on the board like I am.
2. We have quite a few RNs on board; hopefully, my bringing this to the top; they will see & respond to you.
3. check TREEPATROL'S NEWBIE LINKS top of medical.
Posted by lou (Member # 81) on :
I have heard of several cases of bone marrow biopsies where lyme was found. Assume that they sent the sample to a lab where it could actually be found, in the correct preparation, whatever that is. Do your doctors know how to do that? Not sure I would undergo such a biopsy unless they were prepared to use the results correctly.
Have you been given a reason for this biopsy? As in what they expect it to tell them?
I have had bone pain throughout my illness. It responds to treatment for lyme.
Posted by lymeout (Member # 8045) on :
I am interested in response to this also. When my daughter's platelets dropped to 49, the hematologist wanted to do the same biopsy IF they did not go up. Our LLMD said NO BIOPSY! She is out sick, so I can't ask her why.
Posted by lou (Member # 81) on :
Mae - I have had low WBC for several years now, think it is lyme caused. The low RBCs, though, sound more like babesia. Have you been evaluated for that co-infection? Do you have night sweats, chills, air hunger?
Lymeout, here is a previous thread on low platelets:
Hi- I was VERY interested to see this post. Especially the one from the woman with the daughter with the low platelets. I have been suffering from ITP (low platelets) for three years now and am convinced it is all related to this Lyme disease. I really think I was infected the first time 3 years ago when I had the rash, hives, bad flu, etc., which then started this decline in my platelets and gave me the ITP. At the time, the lyme test from the walk-in clinic I went too was negative, but I wonder since I really have not felt "great" since then. It seems that when I start to feel really bad with the lyme symptoms, my platetlet counts crash down to 15,000 and under. I am now on IV antibiotics and my platelets seem to be stabilizing more than they have in months, although it is still too soon to tell. Regarding the bone marrow biopsy- I have had one- it is not so bad. I went to a concert that evening and was just a little sore. The worst part was waiting for the results,which was when they diagnosed me with ITP. MY weekly CBCs usually also show my WBC as being high.. I still think there is a relation with the lyme and the ITP.. Regards, Natalie
Posted by Lymetoo (Member # 743) on :
Nope, wasn't me. Maeflower, I'll be praying for you and hope things go well. I was wondering too whether or not you'd been treated for babesia as it affects the RBC's.
Keep us posted, OK? Posted by bettyg (Member # 6147) on :
breaking this up for readability for us neuro lymie...
quote:Originally posted by nat: Hi- I was VERY interested to see this post.
Especially the one from the woman with the daughter with the low platelets. I have been suffering from ITP (low platelets) for three years now and am convinced it is all related to this Lyme disease.
I really think I was infected the first time 3 years ago when I had the rash, hives, bad flu, etc., which then started this decline in my platelets and gave me the ITP.
At the time, the lyme test from the walk-in clinic I went too was negative, but I wonder since I really have not felt "great" since then.
It seems that when I start to feel really bad with the lyme symptoms, my platetlet counts crash down to 15,000 and under.
I am now on IV antibiotics and my platelets seem to be stabilizing more than they have in months, although it is still too soon to tell.
Regarding the bone marrow biopsy- I have had one- it is not so bad. I went to a concert that evening and was just a little sore.
The worst part was waiting for the results, which was when they diagnosed me with ITP.
MY weekly CBCs usually also show my WBC as being high.. I still think there is a relation with the lyme and the ITP.. Regards, Natalie
Welcome Natalie to our special 24/7 support & educational board.
Please hit enter often when typing so we neuro lymies will be able to read/comprehend what you have typed and may be able to help you too...thanks!
Posted by maeflower21 (Member # 4379) on :
Thanks for all the suggestions everyone.
One of the main reasons for the biopsy is to see if lyme is present in the bone marrow.
I'm don't know what lab they plan to send the sample to though, I will look into it.
I have been treated for babesia in the past and we thought that we had eradicated it, but then again there is a possiblity that it is still present.
I just had a babesia FISH test sent out and I'll know the results in a couple weeks.
The good news is that after some begging and pleading with DR J he is letting me start IV Zith again today, because I am relapsing so fast.
So we are all keeping fingers crossed that my counts hold up for the next couple weeks until we get some answers from the biopsy....
Thanks again for the replies, this is such a valuable resource. Posted by Lymetoo (Member # 743) on :
quote:Originally posted by maeflower21: I have been treated for babesia in the past and we thought that we had eradicated it, but then again there is a possiblity that it is still present.
Very few people eradicate babesia with one round of meds...even if it was several months worth. Glad you had another test, but realize that the tests are not conclusive.
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