Rumigirl
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posted
I've had a problem since early July, and even earlie,r of having my WBC's & absolute neutrophils going very low due to treatment. I had to be off all treatment for a month during the summer due to it. During
that time, I slid back to below zero. And my absolute neutrophils never did come back up, except a little temporarily, only to fall back down again.
This time my WBC's are 2.3 (in the Alert range) and absolute neutrophils are 1.0 (4.0 is the cut-off for normal). 1.0 is getting dangerous. I am now pulled off all treatment again.
I had added in frozen colostrum and high-dose niacin, which had finally done the trick to bring my numbers up, although the WBC's never came up to normal. I was thrilled.
And now I'm worse off than ever. It's clearly because I was doing rocephin 4 days a week twice a day, and had begun to add in one dose of IV flagyl. My results would likely be lower today than Friday's blood draw, because I had 4 more doses since then.
My hematologist was curt with me and said, "no rocephin for you ever again!" He never wanted me to go back on it, as he lost a colleague to neutropenia from rocephin.
My IVIG neurologist, whom I see tomorrow is going to have a fit, too, and I will be off IVIG again, due to this. He is mad at me that I am treating the infections, as according to him (who used to be
LL), all my positive test results are "false positives" and I have "Post-Lyme Autoimmune Disease," despite not a lot of treatment and illness of most of my life.
I am going to order Transfer FActor, as now the colostrum and niacin are not enough. Plus, I won't be able to do such intensive treatment.
I have been mostly off treatment for years and years, due to one treatment obstacle after another. I'm really upset and discouraged. ANd I will have to continue to "manage" my neurologist and even my hematologist, who is actually on my side.
I still have Anaplasma, which along with Bb, etc. can cause this, in spite of treatment. Sorry for the long post!
[ 10-03-2012, 06:50 PM: Message edited by: Rumigirl ]
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poppy
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So would another drug, instead of rocephin, be less of a problem in this area?
Since this can also be associated with B-12, folate, and copper deficiency, what is your status on these?
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BoxerMom
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So sorry for this situation!! Lyme feels like two steps forward, three steps back, for many of us. Just keep going. That's all you can do.
And it is totally lame that we have to be/manage our doctors. Lame and exhausting.
Rumigirl
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posted
Lame and exhausting is right! I am NOT looking forward to the visit with the neurologist tomorrow! He has lambasted me numerous times on this issue. My husband is coming with me, thank goodness, as a buffer.
I just emailed THE Dr. B about this. He said that the Transfer Factor may not bring the count up, but can help with the immune response. He also suggested hematology looking for unrelated bone marrow problems (God forbid!).
I was trying go see what is the best brand and version of Transfer Factor, he said to research it, but he used Research Nutritionals.
Yes, I guess I'll have to try another IV abx when I'm able to return to tx, but MOST of them cause leukopenia/neutropenia! Flagyl is apparently also a bad cause of this (had one dose before the test and 2 more doses since). And mino, which I was supposed to start for Anaplasma also does in bold! Arghhh!
Now I've got 2 docs mad at me over this, when it isn't my fault. Although the hematologist didn't want me to do rocephin again.
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posted
I had to go off abx again too because my WBC dropped to 2.3. My counts came back after about 5 days. This is my second time in 3 months. My LLMD had me start Coriolus it is a mushroom extract, it's supposed to raise white cell counts, I think I might do the Transfer Factor too. I hope you can find something that works.
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poppy
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Would pulsing do anything? Since the counts come up after discontinuing, maybe days off might make this less of a problem?
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Rumigirl
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posted
Maybe so. I looked up IV claforan and clindamycin, the most likely other meds to try, and they have leukopenia/neutropenia as side-effects in bold as well. Sigh. I may have to pulse.
And how the heck can I target more than one pathogen at a time, when even one gets me in trouble! I have Lyme, Anaplasma, Mycoplasma, Chlamydia Pneumonia, and clinically (strongly) Babesia & Bartonella. NOt to mention lots of viruses and God knows what else.
I have never in years of trying been able to be on any treatment for more than a very short time. And years of alternative treatments (rife, herbs, ozone, silver, etc., etc. only caused lots of herxing with NO improvement over 3 1/2 years).
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Rumigirl
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quote:Originally posted by poppy: So would another drug, instead of rocephin, be less of a problem in this area?
Since this can also be associated with B-12, folate, and copper deficiency, what is your status on these?
My B-12 level is really high (I take it orally in a b-complex and injected). This is likely due to not only taking it, but to methylation problems which may cause it to be unavailable. But I do do methyl b-12 injections.
Folate, I should take a special supplement, because of my methyaltion pathway blockages---I'm not taking it now, as it was really expensive. Not sure about cheaper versions.
Zinc and copper are in my multi's, but I just started taking separate zinc after you reminded me.
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posted
Thorne basic nutrient iv has Folate copper zinc and b12 and other things that help with methlylation maybe that would cut down on some cost?
I am sorry you are going through this. I have been on claforan iv for many months now along with zith Cipro and septra DS and my WBC and ANC fluctuates a lot. It is now low 2.5 and 1.4.
My doc said it could be low from erlichiosis and wants me to take rifampin? I really don't want to as I have a weak liver. Maybe you could ask your md if that could be what's going on with you?
It sounded like this may have been something that was gone over at the Lyme conference in Philly.
Hope things get better for you soon.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
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WBC count is low for many of us, even before treatment. So infection can do this too apparently.
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beaches
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I'm sure you know that the TBDs can also be the culprit of your low counts.
Have you tried LDN (low-dose naltrexone? I have been told that one should start at a low dose like 0.5mg or 1.0mg and work your way up slowly to the optimum dose, which ranges from 3mg - 4.5mg depending on the person. LDN is obtained through compounding pharmacies and a script is needed.
Rumigirl
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quote:Originally posted by poppy: WBC count is low for many of us, even before treatment. So infection can do this too apparently.
Yes, I know that. I'm between a rock and a hard place, because I need the abx to get rid of the infections, but the abx are causing the low WBC's & neutrophils to go so low, it's dangerous! Even my LLMD, who is more sanguine about this, has taken me off treatment.
In terms of LDN, I was on it, and need to go back on it. Thank you for reminding me. I went off, because I can't take it when I have to take Percocet for pain, and I was having to take that way too often for a long time.
Thank you, Lymetoo!
Spindleshanks, does the Thorne supplement you mentioned have the right kind of folate for methylation problems? Not just regular folate? I gather so, but not sure. Oh, just saw that's IV, too.
[ 10-02-2012, 01:00 AM: Message edited by: Rumigirl ]
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posted
Have you asked your doctor about taking neupogen?
-------------------- gatorade girl
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Razzle
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And yes, it has the active form of folate, L-5-methyltetrahydrofolate, in it, too.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Rumigirl
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quote:Originally posted by gatorade girl: Have you asked your doctor about taking neupogen?
Yes. I just saw my hematologist today. ANd my #s are ok today!! As of today my WBC's are 3.6 and ANC is 1.8, a huge improvement from last Friday. Last Friday, my blood draw was the day after my
IVIG, and that can cause leukopenia/neutropenia, although it never lowered it this much before. I"m sure it was the combo of high dose rocephin, IV Flagyl, IVIG, plus other meds that I take that cause this. In the future, I'll do my blood tests 5 days after IVIG to avoid this effect.
The hematologist considered giving me Neulastin/Neupogen every 3 weeks to keep up my WBC's, but said that he thought I would only need it if I started getting infections (other than the underlying infections). He said I could continue tx, knowing that my WBC's will likely go down and up like this.
I hope to hear from my LLMD tomorrow as to how he wants me to proceed. I'm so happy that they came up again. What a roller coaster!!
My IVIG doc didn't lambaste me after all, although he thinks I shouldn't treat the infections ("Post-Lyme Autoimmune Disease" and "false postitives)." Well, that ain't gonna happen! I'm sure that having my husband there was a help, as he's never yelled at me when he was there!
Thank you, Razzle.
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posted
Such good news! The supplement is by mouth it is called Thorne Basic Nutrient "Four" there are different ones...sorry for the confusion.
I have found it to be my most valuable supp so far. Love it. They have one without Iron if that is an issue. It is the folate for methylation.
pureformulas.com has no shipping and no tax
15% off with the code FALL15 from an email I got.
I am not connected to this website or product just trying to help:)
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sammy
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Rumi, I'm glad to hear that you are doing better and your appts went well. What a relief! Hopefully your LLMD will restart your antibiotic treatment soon.
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Rumigirl
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Now my LLMD is away until 10/9, and his PA is out today. I doubt that she will want to make the call on this herself. : - (
Last night I was reading yet more on Neutropenia/leukopenia, and I saw that I have been having some symptoms from it, that I didn't know were symptoms of it: chills (which I was having intensely), heat flashes (not hormonal),
burning on urination, inability to hold urine (which I had severely), mouth inflammation, and other symptoms, which are difficult to distinguish between this and the underlying infections.
The very abx that I was taking, or was about to take (minocycline) cause neutropenia. So unfortunately, I do think that we will have to moderate my treatment. It's not a benign condition. But it's a catch-22: I can't get rid of the infections without taking the abx that cause neutropenia. Unless I go back to rifing, etc.
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I also became very neutropenic and still am but my md doesn't want me to stop just add mino and eventually rifampin I am hesitant to change anything because I was doing so much better.
I am always border low but it was when I added lumbrokinase and artemesia annua when it tanked? Keep us posted:)
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Rumigirl
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I don't want to keep stopping! But my numbers got really low this time---again. I am going to have to modify the treatment, so as to not go so darned low. It's so frustrating. And, yes, the Anaplasma is a big deal in terms of lowering the WBC's.
The PA, who was not in the office after all today, emailed me back, and said that next week I could go back on rocephin once per day for 4 days, and then to wait until I've had 2 decent test results before adding in anything more. I'll see what the doc says on Tues.
One step forward, one step back, it seems.
I was supposed to be doing rocephin bid 4 days per week, IV flagyl for 3 days per week, and then slowly ramp up on oral mino for the Anaplasma.
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Rumigirl
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Spindleshanks, I presume that your numbers have never gone below what you posted above, right? Those numbers are still pretty low, however.
I would like to keep going, but at a certain point, you can't, or you risk death from a tiny infection! And the last thing I would want is have to go in the hospital, where one's risk of infection would go up exponentially, esp right at the time when you have next to no immune system due to the low WBC's!
BTW, the hematologist said that with the Neupogen there is a small, theoretical risk of getting leukemia from it. He said that he didn't agree with that opinion, and it would be very rare, but
. . . yikes! What a slippery slope. He's not inclined to rx it for me now anyway. Plus, he said insurance might not pay for it---it's very expensive.
Off tx again, my pain levels and migraines have increased again. I was up all night for the umpteenth time battling horrible pain and a bad migraine. It felt like my body had turned to stone. Arghhh!
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No that was the lowest they have been so far. Yes it is very scary and can be life threatening.
I hope you feel better and get back to your tx soon.
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momlyme
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Rumi - not sure if you remember me... In June, 2010 I found Lymenet after a horrific experience with taking my son to our family doctor for Lyme.
He was positive for Lyme but after 28 days of treatment, they dismissed him and said the swelling of his joints was "normal gout" and put him on prednisone.
Long story short, he got worse, started having seizures and we found LN and got with an LLMD. Although we did not see Dr. J, my son's LLMD was conferring with him once a week because my son was so sick... sicker than she had ever seen any Lyme patient.
At one point his WBC was 0.8 I thought ANC was measured by anything under 1200 was bad... and my son was 700-900 for weeks at a time.
I took him off all antibiotics and started treating him for high mercury and lead levels according to Dr. K's HPU protocol.
After 3 months of this treatment he was still sick as a dog. I installed water filters, tested for radon, tested the water, changed toothpastes, changed hair products, he was gluten free, dairy free, sugar free and still his quality of life was a ZERO!!!
We tested our house for mold using an ERMI test which came back VERY high. We moved out and my son started getting better FOUR DAYS LATER!!!
Four months later, he was 100% and has been 100% ever since. Kids bounce back quick. Especially where he was only REALLY sick for 9 months and not years like many of us have been.
We have been out of the mold for 20 months and I am 100% too. Just got to where I feel 100% all the time about a month ago.
I am praying that you find the path that helps you most.
If you decide to move out of your home as a test... TAKE NOTHING WITH YOU. This is the only way you will be able to know if your house was making you sick. Anything you take from your house will keep you sick.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Check copper level....Vitamin C binds or chelates copper and facilitates its removal
[QUOTE]2012 Jan;19(1):58-60. Update on anemia and neutropenia in copper deficiency. Lazarchick J. Source
Department of Pathology and Laboratory Medicine, Medical University of South Carolina, Charleston, South Carolina 29425, USA. [email protected] Abstract PURPOSE OF REVIEW:
Copper deficiency is an under-recognized cause of reversible refractory anemia and leukopenia, particularly neutropenia, often misdiagnosed as myelodysplastic syndrome (MDS). Clinicians and hematopathologists need to be aware of distinct morphologic findings to distinguish these entities including cytoplasmic vacuolization of both erythroid and myeloid precursors, excess iron stores, ringed sideroblasts, iron incorporation in plasma cells, and variable marrow cellularity. In contrast, the findings in MDS do not include myeloid lineage vacuolization, abnormal nuclear lobulation of both erythroid and myeloid precursors, nuclear/cytoplasmic dyssynchrony, or dysmegakaryopoiesis with abnormalities of nuclear lobulation and size. RECENT FINDINGS:
The mechanism of neutropenia remains unknown; however, the study by Peled and coworkers suggests that copper deficiency results in the inhibition of differentiation and self-renewal of CD34(+) hematopoietic progenitor cells. A number of recent studies have reported on the association of copper deficiency with the development of concomitant neurologic deficits manifested as peripheral neuropathies and myeloneuropathy indistinguishable from the findings seen in vitamin B12 deficiency. SUMMARY:
Patients presenting with refractory anemia and leukopenia with or without associated neurologic deficits should have copper and ceruloplasmin levels measured as part of their diagnostic evaluation.
PMID: 22080848 [PubMed - indexed for MEDLINE]
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Rumigirl
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Hmmm, thank you micul and momlyme.
I doubt that I am deficient in copper, as it's in my multi, but I should have it checked---along with zinc. Blood levels don't give a good picture of minerals, however, but maybe with copper ok?? I color my hair, so right now a hair test is out (unless I grow it out).
On the mold issue: I DO have a mold problem in my apartment (I think you probably remember my posting about it, momlyme). I DO need to take care of it!! It's rather complicated, because we rent, we would definitely not be able to afford another apartment anywhere where we live otherwise (it's rent stabilized).
The things that need fixing that are causing the mold, some of them anyway, are expensive, and can only be done by the landlord. We have to deal with this, but it is such a huge undertaking, I haven't been able to get to it yet, although I started to in the spring.
When I've been away from home, my symptoms are no better. Of course, I can't say that I took nothing with me. I know it's an important issue, but I don't believe it's the whole story.
There are so many issues to deal with---all important! Arghhh!
I just started back on rocephin again finally, at a less level of treatment. We'll see how it goes.
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