posted
My teenage son has always had low WBCs (around 3.0) and they fall lower with treatment. He is able to keep them in an acceptable range using corriolus.
His platelets go low periodically... like around 120 to 140.. But never below 100. He had to stop treatment before due to this and they came up. But it seems like they just bounce around, unsure if it's medication related.
His RBCs are starting to go low now.... Like 2.3, 2.5 range. And his platelets on the last blood draw (Saturday) are 110, the lowest they've been.
He's currently taking rifampin, septra, malarone, minocyclene and plaquenil. His LLMD called me last night and said stop all antibiotics. My son really doesn't want to do this. Even though he's herxing hard and could use a break, he's worried about Bart and Babs developing drug resistance.
This is the first time he's treated Bart directly. He had done a year of zithro and mino... which some LLMDs use for Bart. This is the first time he's treated Babs.
He's been on these meds for about 10 weeks. The herxing has been really rough. But he's been managing, working really hard at this treatment.
His bone pain has decreased dramatically as has light, sound and touch sensitivities.
I really hate to stop these meds because he's getting relief from bone pain that had been his worst sx for months!
I also can't say for sure that it's the meds causing the low blood counts. If I knew for sure it would make it an easier decision.
He took some IV EDTA last week to do a heavy metals challange. I've been reading that EDTA is used to clot platelets and can mess up the platelet count.
Anybody have low blood counts with treatment? with any of the meds listed above? Have you found that it was related to your antibiotics, or related to an immune response from a cytokine storm, or any other ideas?....
Posts: 18 | From Maine | Registered: Dec 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
If it was my young son, I would listen to the Doctor.
quote:His LLMD called me last night and said stop all antibiotics
That’s a LOT of very powerful med’s he taking, see below>
Septra - Low Blood Counts due to Bone Marrow Failure - Decreased Blood Platelets - Deficiency of Granulocytes a Type of White Blood Cell - Decreased White Blood Cells
plaquenil - According to the New Zealand Dermatological Society, Plaquenil can cause abnormalities in blood counts. An abnormally low number of white blood cells can lead to infection, because white blood cells defend the body against bacteria. Low platelet count (thrombocytopenia) can lead to easy bleeding and bruising. Aplastic anemia can lead to fatigue, shortness of breath and weakness.
posted
Thanks Steve. Yes, I am being careful and doing what the ND says. BTW that mino website you gave has spyware attached to it.
Found out the RBCs are not that bad. It was the WBCs that were down to 2.5.
I just wonder what other doctors have you all do... when agressive treatment is required but your CBCs get thrown off.
Posts: 18 | From Maine | Registered: Dec 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When my white blood cell count went low during treatment, my lyme doctor had me take Transfer Factor.
After 2 weeks, he retested my blood, and my count was normal! It was like a miracle to me.
So, next time, the WBC went low, we did the same thing. The third time they went low, he told me to just stay on the Transfer Factor until I completed treatment.
The Transfer Factor enabled me to continue my treatment uninterrupted.
This was 9-10 years ago (I completed treatment 9 years ago and am still symptom free). The brand was 4Life. The main ingredient was bovine (cow's) colostrum.
It is expensive, but it works so well, or at least it did for me.
Hope you can get some and get him back on his treatment soon!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
That's a great idea. I've always wondered about transfer factors.
Way to go with the remission TF.
I also found a study that indicates high dose fish oil decreases WBCs. Having DS take a break from that as well and hoping his counts come up soon.
Posts: 18 | From Maine | Registered: Dec 2013
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posted
My platelets are generally around 60K. That's without any medication. For me it may be Lyme related or it may be autoimmune or who knows what. Low platelets for around 12 months or something get categorized as an autoimmune disorder called ITP.
Dr.'s get anxious about platelet counts and used to treat patients with higher counts than they do now. I think the current practice is to treat people with steroids if their counts fall under 20k. The medications typically only bring people up to a stable count of 50K so anything above 50k is not treated.
There's the Platelet Disorder Support Association which has an active and helpful discussion group. Many members are walking around with 2k-10k and not seeking treatment as the drugs are harsh and make them feel worse than just having low counts. Though they're not feel great at this number either.
I think 90k is considered safe for surgery.
I'm just sharing my knowledge on platelet counts. I feel a little uneasy about hearing that drugs are possibly lowering blood counts. I would definitely have his counts monitored closely. A low WBC count could make him more vulnerable to all kinds of infections. Depending on how low it is it might be worth halting some treatment in my opinion.
What I found most disturbing about having a low blood count diagnosis was the realization that there's not a lot you can do when your bone marrow starts to fail you.
It made me feel like a dying plant or tree. I've tried to nourish the soil. Nutrition, clean water, exercise, positive intentions, healthier relationships, etc. It's all certainly made me feel a lot better but if anything the blood counts have only fallen a bit more.
Posts: 154 | From Boston | Registered: May 2014
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posted
Thanks Samlyme. I wonder if its bone marrow not making enough or destruction of what is made, or both. If bone marrow is failing I've got to consider cancer.
Anyhow...My DSs ND took him off rifampin for now. Going to retest and reevaluate in a week. Need to get these levels up.
It seems his levels go low with lots of herxing, suggesting an autoimmune component.
I had heard previously that 50 was when doctors really get worried about platelets. Have you ever considered IVIG, I see it can help low platelets too.
Posts: 18 | From Maine | Registered: Dec 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Mystic, when my white cell count went low, I was on Septra (Bactrim DS). My lyme doctor said that this happens because the body senses the antibiotics which are killing infection, so it believes that it doesn't have to make very many white blood cells (which kill infection).
So, based on that, I would definitely assume that it is the antibiotics that have made the white cell count go low, nothing else.
I asume you have no other reason to consider cancer. That just wasn't even on the radar when this happened to me during babesiosis treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, That really makes sense, what your LLMD said. Whenever this happens our LLND brings up cancer, I think it's because all of his counts drop at once, so he considers bone marrow problems.
Last time our LLND consulted with a hemoltologist/ oncologist who indicated it was the medication. But I sometimes wonder... maybe a need for a visit to a hemotologist.
Interesting it was the Septra for you.... LLND had DS drop rifampin but stay on Septra.
I called LLND about the transfer factor a couple days ago, but no return call. I'm looking into it and need a brand that is casein free.
I
Posts: 18 | From Maine | Registered: Dec 2013
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posted
Hi Mystictreeoflife, With ITP it is thought that the immune system is tagging your platelets as a virus and then your spleen - which is like a filter for your blood will remove what's old and dead and in theory will excessively remove these platelets tagged by the immune system as a virus. So it's thought that it is possibly an excess destruction issue.
Platelets only last 10 or so days and then you create more. The younger they are, the larger and more effective they are. I always had an excess of larger platelets so it seems like my bone marrow was always plugging away trying to replace what was lost.
I guess I just started to think bone marrow failure because I had lower but within normal range red and white blood cells and I didn't know I had Lyme disease so I just thought I was dying, especially with all the extra unexplained issues I had. I thought the exhaustion was from all the work my bone marrow was doing to make more blood… I felt a little better when my counts were higher. Now I'm wondering if higher counts meant a lower level of lyme or maybe some coinfection in the blood and that's why I'd feel better.
On the upside after being prescribed doxy at 200 mgs for 28 days my platelet count went up from 60 to 89. That's the highest it's been in five years!
I've never done any IVIG or any medication. Dr.'s get nervous at counts of 50 but all of the treatments available can only hope to keep you at a stable level of 50 so if you're already there they don't try to treat you. That's a new protocol. They used to treat people more aggressively until studies started to show that patients with lower platelet counts can have a normal quality of life and a determining factor for reduced quality of life had to do with the amount of treatment the patients were undergoing.
Posts: 154 | From Boston | Registered: May 2014
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posted
Thanks Samlyme. Interesting the doxy brought your up.... Sounds like infection induced thrombocytopenia.
My son has been off the rifampin for six days and is feeling awful! I guess that med was really helping him. This is the first time he has felt worse stopping an abx.
He's having a huge Bart flare: impaired thinking/ talking, much more fatigue, raging.
Need to figure out how to treat Lyme, Bart and babs simultaneously, without his CBCs going low. Any more thoughts?
Posts: 18 | From Maine | Registered: Dec 2013
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