Topic: Scroll to last post-I have Neutropenia & Leukopenia from abx & IVIG-expers/knowledge?
Rumigirl
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What do you guys know about, and what have you experienced with Neutopenia and Leukopenia from abx and/or IVIG? I've now become quite educated on it, but still . . .
2 weeks ago at my f/up appt w/ neuro for IVIG, he freaked out that I had Neutropenia. At that point my Absolute Neutrophils
were 1.6 (normal is 2.0 and above). My WBC's (& RBC's) were low, as they have been for quite a while. IVIG can cause low WBC's & RBC's.
He said that if my Absolute Neutrophils went to 1.5 or below, he was pulling me off IVIG. He also got really mad that I was on all the abx I was on: rocephin, rifampin, oral clindamycin, and Mepron.
(He used to be LL, but now is in the "Post-Lyme Autoimmune Disease" camp. And he was mad that I was taking rocephin twice a day 4 days/week---told me to only do it daily.
Blood tests from Fri. before last revealed that Absolute Neutrophils had gone down to 1.3, WBC's had gone down to 2.9
(normal is 4.0 and above).---and Labcorp screwed up so I didn't get the results until Wed. My LLMD never noticed the levels, even though I'd emailed them about the issue.
I saw a hematologist Wed., who was really concerned, took another blood test (the same level), and said to stop all treatment immediately, to not go away as planned, and to see him on Fri. for another test. He lost a colleague to Neutropenia very quickly, due to rocephin.
Friday, the WBC's had come up to 3.1, Absolute Neutrophils were the same. I go back tomorrow.
My LLMD"s office doesn't think that it's a problem clinically, and said the levels come up off abx. My neuro's office isn't replying at all---don't know if he's away, or just fed up with me (he gets mad very easily). Probably away, but sec'y hasn't told me that.
Off all tx abruptly, I'm crashing, and feel back to zero at least energy-wise.
So . . who is over-reacting vs under-reacting here? I sense both is happening (LLMD under reacting, neuro & hematologist over reacting). But maybe not over reacting.
I'm also having a viral infection outbreak for no apparent reason that was happening twice back to back recently---indicating immune suppression. Lord have mercy! It's a slippery slope.
[ 08-13-2012, 04:41 PM: Message edited by: Rumigirl ]
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posted
We are in the same boat. I got pulled off abx a week ago and I'm going down hard too. My WBC count is 2. I retested yesterday I hope it goes up quickly because I'm feeling so bad off abx. My RBC's are low too. I have low Neutrophils but high Lymphocytes. I was doing so well. Posts: 845 | From Northeast | Registered: May 2011
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posted
Several years ago hubby never had a problem with WBC's but at that time he was NOT treating very aggressively. When he finally got to the therapeutic dose on rifampin after ramping it up over 8 months his WBC went low -- can't remember the exact number. His LLMD wanted him to back off meds but hubby convinced him to wait and repeat the bloodwork -- I think we were doing it every 2 weeks back then. His WBC went back to normal the next time around and he did not have to decrease the meds at that time to correct the WBC.
But the last year or two is a different story. For hubby when he treats babesia aggressively not only does the RBC go low, but the WBC often goes low as well. Hubby just keeps monitoring it and so far we have not had to stop or even reduce meds due to low blood counts. They bounce around a lot.
You of course have the added complication of the IVIG to consider. But if it was me, I would go back on 1 or 2 meds -- the ones that you were on before the bloodwork went low and then just gradually add in more meds and increase the doses more slowly next time around.
Hubby is having bad herx reactions to IV flagyl (pulsing it 2 days per week) -- no herx to oral which makes no sense to the doc -- but per a phone consult this a.m. the doc suggested not stopping the IV flagyl but to just back down on the dose of that med only. The doc was afraid that totally stopping the IV flagyl and then trying to restart it later would could a much worse herx than just temporarily lowering the dose.
Sorry you are having so much difficulty getting feedback from your docs. Hubby and I know how much harder it is when you feel like you are all alone and have to make your own decisions about everything. We were very pleased that his current LLMD returned a brief phone call the same day we left a message.
Hope you feel better soon.
Bea Seibert
P.S. Have you thought about switching the rocephin to daily? Hubby had to go back to once per day on IV rocephin and once per day on IV zithromax. The 4 grams a day of rocephin caused too many neuro symptoms. He was doing some better on the 2 meds until we tried adding in the IV flagyl. He has been on that orally for months, but the IV reacts so differently even at only 250 mg per day.
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posted
Most LLMD's hubby has seen do not worry unless total WBC goes below 3.0 And very few even pay any attention to the breakdown of the components. Some do not even run a differential count -- only look at the total.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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RC1, I'm sorry to hear that. We should compare notes as we go along. Yeah, it's hard to suddenly go off everything at once.
In fact it had taken me many months to slowly work up to the meds and doses that I was on. Very tough, actually.
On the other hand, I was so fed up with all the constant treatment, and, even worse, the continual battles with drs offices, insurance co, labs, 2 different infusion co's, dentists, etc. that I needed a break---but not like this. Plus, I still have all the hassles anyway, just minus the treatment.
Bea, I had already gone back to rocephin once daily, as per the neuro. But even so, my WBC's and Absolute Neutrophils kept on going down (WBC's to 2.9).
Yeah, my LLMD would probably not have pulled me off anything. They have been so slow to respond each time. And nothing at all from the neuro for 6 days, despite numerous emails.
So, yeah, I had to make my own decisions, along with the hematologist, who put the fear of God in me. His colleague died after his absolute neutrophils went quickly down to .9 from rocephin. He said, "you don't want to go in the hospital!" And with an impaired immune system, no, thank you!
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Rumigirl
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I looked it up: ALL the abx I was on, IVIG, and at least one other med ALL cause neutropenia/leukopenia!! Yikes! Obviously, not in everyone, but . . .
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philly78
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My WBC hasn't been above 4 in YEARS. When I got admitted to the hospital a couple years ago, the lowest my WBC was, was 1.2 and my absolute neutrophils were around the same. I have been as low as 700...or 0.7. I've been having my blood drawn frequently since then and I seem to live around 3 for the WBC and 1.5 for the abs neutrophil count.
When I was in the hospital, I was on IV flagyl and Cipro and I believe that contributed to my even lower counts.
No one really seems to be concerned with this. I was kinda freaking out about it since I work in the ER. I thought it would make me more susceptible to getting sick but I haven't gotten anything on top of the lyme and cos.
When I was preggers, my WBC was 5.4. I haven't seen numbers that high in YEARS! But it is back down in the 3's again and I am still in the "mild range" for neutropenia.
Someone told me that colostrum would help and I did buy some but never actually started taking it. This was right before I found out I was pregnant and my numbers went up...albeit temporarily. Maybe I'll try it now.
Anyway, that is my experience.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Wow. Antibiotics can make your wbc and red blood count go down? Never knew that. Isn't neutropenia a form of sepsis? Cause sepsis is very serious and so is a low WBC. Interesting to read.
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Rumigirl
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Well, not only can the abx make WBC and neutrophils go down, but so can the infections themselves, and so can autoimmune diseases, which I have plenty of, thanks in large part to very long term Lyme
& co's, I believe. But my hematologist said "you already had the infections and the autoimmune diseases," meaning that my #s weren't that low until I was on all this treatment.
But what I wonder the most is if this is all a tempest in a tea pot. If my neuro hadn't freaked out (and then dropped out of the picture!!), and I hadn't seen a hematologist, and just stayed on everything, would I be fine, and would the downward spiral have bottomed out??
There is no way to know the second part. The first part, it sounds like is true from what almost everyone has said so far.
And now it is 7 days with no word from my neuro who started all this freak out. It took me 4 months or more to work up to this level of treatment, so I have no idea how, how much, and what I can go back on treatment with after this.
I've really had it. Esp with how difficult it is to get a response from my drs. I'm paying them so darned much, there is no
excuse. My neuro may be even madder that now I have a hematologist on board superceding his word. But there IS no word from him!
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posted
Rumigirl, just an update from me. Got my test back today and went from a 2.0 to a 5.6 in one week my first day off the abx I had crazy night sweats, I wasn't sure if it was a Babesia flare or my immune system kicking in.
My neutrophils normalized and so didn't my Lymphocytes. My RBC's are still low but that has been pretty normal for me all along.
Hopefully you get back to your baseline soon too. This actually is the highest my WBC's have been yet. I did major renovations in my house for mold. Maybe I'm no longer immune suppressed?
Best to you. R
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Rumi, Thanks for the info. Its all very complex. I've been back to normal for so long now and its been a blessing. I pray you get this straightened out. I'm almost glad I did not know all this while fighting through the Lyme. My WBC and RBC have always remained the same with lyme and after at healthy numbers. I'm awful glad I did not require many abx. I know they not only can make you better.. But can also screw you up. Hang in there.
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posted
It is also possible to feel like you are crashing right after you stop meds, but it can actually be a withdrawal syndrome that goes away in a week or two.
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CD57
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I don't get it....how can IVIG cause those problems? It is supposed to augment the immune system, not deplete it?
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Rumigirl
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RC1, that's great! I wish mine was that robust.
I was wrong: at it's lowest, my WBC was 2.7.
Had another blood test today and saw the hematologist; my numbers are coming up. WBC is 3.5 and Absolute Neutrophils are 1.77.
He wants me to come back in a week and get another blood test. He said when the WBC comes up to a 4, I can go back on IVIG, then see how my #s go while on IVIG before going back to any abx. Plus, the whole time I was on IVIG, which is the better part of 2 years, my WBC's have been low. Sigh.
He's way more cautious than my LLMD, or even the neuro. He said if I went right back to rocephin, my #s could plummet, even lower than before. He also said that rocephin was famous for causing leukopenia (even though the other abx and IVIG can cause it also, he thinks not as much).
When I said that my Lyme dr didn't think it was a problem (except that 2 other drs did), he said that any hematologist who didn't think it was a problem would be a dope. He also said, my LLMD couldn't predict whether I would get an infection while my #s are so low, and that any small infection could kill me. Yeesh!
It's so weird that the LLMD's are so much less concerned. I guess they see these #s go wacky a lot and think it's relatively ok. But they also don't have the specific knowledge that a hematologist does (for better or worse---I don't know).
I am crashing horribly though. Am on the couch unable to sit up a lot, in spite of taking all kinds of stuff to try to keep going. And it took me 4 long, hard months to get up to all the meds and dosages, so that is really discouraging.
Hopefully, I will slowly get back on things eventually, but not as many meds, I'm sure. Still no word from the neuro. I have no idea if he is away or mad at me. I wish the heck I knew. He's the one that started all this.
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Rumigirl
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manybites, did you ever get rid of Babesia? What did you take for it when you were just treating babs? And what did you take when you were treating all 3 at once?
I was treating all 3 at once recently, until I had to go off everything, due to the really low neutrophils and WBC's (& RBC's, too). I think Babesia may be one of the worst offenders for me,
and the hardest to get rid of----although it's is hard to say which is worst, because they are all in there. Plus, the umpteen other infections that I have, most of which have never been addressed.
I still have very high #s of Anaplasma, too (IgG no less), so . . . What a mess! Every single time I have gotten on tx and started to make progress, I have a tx obstacle and have to go off all tx. Very, very frustrating.
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sammy
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Rumi, I'm surprised that your LLMD and LLneuro have not called you back about your recent lab results. Maybe they feel like you have already taken care of the situation by seeing the hematologist. Even still, they should call back if you have contacted them expressing concern.
My LLMD watches my labs closely and sent me to a hematologist when I started getting abnormal results routinely. Now that I am being followed by the hematologist, when my condition gets worse he calls and sends the results directly to my other doctor for review. Or sends me to the ER... Depends on the severity of the situation.
Your hematologist should continue to evaluate you to figure out why you have those abnormalities. Turns out mine are from the infections. So I can't stop IVIG or antibiotics, that would make me sicker!
I get labs done every week or two. For the past several months (had to look at reports) my WBC has run between 2.3-3.9, absolute neutrophils run between 1.1-1.5, RBC's are low too with Hgb less than 9.
I think that our LLMD's do worry. They are the ones that are trying to balance the risk vs the benefit of treating. They want us to get better. Sometimes it's difficult for them to figure out how to get us there safely when all these obstacles keep popping up.
Maybe you could try a slightly lower dose of IVIG? I wonder if that might be helpful since the dose for neuro is so high and the dose used for immune deficiencies is so much lower. Just a thought.
Sounds like you have a hematologist that truly cares. See if you can get him to collaborate with one of your LL doctors or at least recommend further treatment for you that would be more appropriate and safer.
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Rumigirl
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I am really unhappy that my neuro, who started this won't respond. But I have to lay low with him, or else he will dump me, which he already started to do in my last appt. He's extremely
difficult. And there is no other neuro for Lyme patients for IVIG. He would not be willing to collaborate with the hematologist at all, I'm sure. It's his way or the highway.
The hematologist has a plan in mind, but, of course, doesn't understand the effects of suddenly going off all tx that I had worked so hard to ramp up on. But he did it because he was worried that my life was in danger.
Off of all treatment now so suddenly, I am completely incapable of doing much of anything: can't sit up, stand up, no energy to eat (I force myself, but it's hard, esp when you can't sit up much), can hardly breathe or think.
I'm dosing myself more and more with all kinds of meds and supplements and caffeine to try to function a little tiny bit, but mostly no go, in spite of everything.
I'm utterly discouraged. It has been so many years of trying to treat, and getting no where.
We are supposed to go away for a 3 day weekend to friends'. We can't reschedule it, due to my husband's work schedule.. But I have no idea how I can manage,
except all of the above, a ton of caffeine, and a ton of pushing (which is the only way I do anything anyway, but this is way, way worse).
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rumigirl,my blood test just came in. WBC is 2. Neutrophils is only .2, critically low. My doctor said that the smallest infection could kill me.
I wondered if waiting is the thing I can do. How long does it take to go back up?
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Rivendell
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Well, I have had low WBC count, low neutrophils, and high lymphs for years. I only recently started with LLMD and using antibiotics for Lyme.
So, in my case, the antibiotics are not causing this.
My LLMD says the low WBC and high Lymphs indicate a virus involved. Had high titers EBV and HHV-6.
Also high C. pneumonia.
Doctor said low neutrophils usually means parasites and/or allergies. (Interesting, because parasites and cause allergies.)
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Rumigirl
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This week, my absolute neutrophils went way down again to 1.41. Who knows why. My hematologist wants me to wait in the IVIG, and certainly on the abx.
But I finally got the neuro to weigh in, he thinks it's ok to go back on the IVIG. (I found out yesterday that he usually lets people infuse down as low as 1.2 (or just above anyway)----contrary to what he said in my visit, when he had a fit because it went down to 1.6.
He also sent me a really snippy email over the weekend, not addressing the low counts I had had for 3 tests running. I am so tired of dealing with him; if there were someone else I could go to for IVIG for neurological Lyme, I would.
So I am stuck between 3 different dr's opinions. I went ahead with the IVIG Thursday, as I had scheduled it, thinking my #s would come up enough.
The hematologist is very conservative, and wants me to wait on everything, the LLMD thinks it would have been fine to stay on everything (aside from the concern of 2 other drs), and the
neuro had a fit when my #s went low, but I found out yesterday, he usually keeps people on treatment until down to 1.2 or below(!!??). What the heck?!
But now I don't know what to think. If the neuro hadn't freaked out so much, I would have stayed on everything. I have been doing absolutely horribly off of everything. I have been feeling
like someone pulled the plug and drained out all my blood (not that I was doing great before, but I had improved quite a bit).
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Rumigirl
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I just saw the 2 latest posts before mine.
rainbowriver, whoa! Your numbers are so low, you could get one tiny infection on your finger and it could kill you! Do you know why they are so low? Have you been doing any treatment that could do this? What does your dr say? You should probably see a
hematologist on an emergency basis. I do mean emergency. They can give you Neupagen or other treatments to bring it up quickly, at least temporarily. Plus, you should be hospitalized, although that has it's own risks.
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Rumigirl
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Rivendell, that is interesting. I have been having horrible allergies lately, although I don't think it is to a particular substance, just reactive all around.
I do have really high viral titers when tested numerous times, including CMV, HBV, HV 6, etc. Also high C Pneumonia. None of which have ever been treated.
But in my case, although my #s might have been low before all treatment (not sure), they went super low from all the treatment.
Now I wish that I'd stayed on everything, although my #s just kept on going lower. If they had gone much lower . . . it would have been getting into the critical range. Sigh. Enough already!!
My friends at my Lyme Support Group last night were counseling me to just let myself crash, be bed-ridden again, and stay off everything until my #s came up. I'd already made the choice to go ahead with the IVIG, since I had assumed the #s were higher still though.
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Rivendell
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I would think the IVIG would help your immune system.
Many people get help with their immune system by taking cat's claw.
posted
I am very concerned about it. Will see a hematologist hopefully on Monday. I stay in my room and don't go out. My lymphs is very high 80 out of 14-46 range. I took Mepron for 2 days and got very sick. I also just had a viral infection. I don't know which one caused it.
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Rumigirl
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I am still really struggling off all abx, since this mess started. I am not only bed/couch-ridden since I stopped all treatment, but even with increasing the doses a ton on all my meds and supplements to keep me from passing out and to get me going somewhat, I still can barely sit up to even eat or drink. I again am "too tired to breathe," having sweats and chills in bed at at night, and day sweats, too.
It's been so bad that I again got really suicidal---got really, really close again this weekend. (I feel ashamed to admit it) It was a horrible weekend. My poor husband just about went out of his mind with it all, too. It's just hard to have any hope that I can get better, when it's been this bad for 7 years, and horrible for decades before that. And this with spending all my time, $, & energy trying to get well.
I just don't think i can continue off all treatment except perhaps the IVIG, which I just went back on last Thurs., against the better judgement of my hematologist.
I am majorly upset that I found out on Wed. that my neuro that started this mess was having a fit, not just because my #s were so low, but mainly, I think, because he was mad at me for doing the abx. And then, he stopped responding to me.
I am now not sure that I needed to stop everything. But even that isn't 100% clear, as my #s kept going lower. But i would have stayed on everything, had I known what the neuro's true cut off was!! Or at least, maybe just go off one med.
Now what?? I am going slow, due to what the hematologist wants, but don't think I can hang in there like this much longer. I feel so alone with it. Each dr has a different view of it (LLMD thought it wasn't a problem, neuro had a fit, but it turned out falsely so, hematologist was really alarmed, and wants me to go very, very slowly).
I feel like I'm being tortured to death by this blasted disease complex and all the continual set-backs and crises. I know I am hardly alone in this. But that is even more depressing. Not sure I will ever be much better. Sorry to be depressing, I could use some help in figuring out the best way forward.
I have an appt with my LLMD's PA on Thurs. made a long time ago. But I won't keep the appt unless I decide to go back on some abx now---which would be very much against the judgement of the hematologist. But he doesn't know these diseases or what going off everything has done to me! He's looking at it from his perspective. Arghhhh!
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my first day off the abx I had crazy night sweats, I wasn't sure if it was a Babesia flare or my immune system kicking in.
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