Topic: Red blood cell abnormalities - Babesia/Alinia
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
For the first time in my life, I have elevated Hematocrit, Hemoglobin and Red Blood Count.
I've been on Alinia and Biaxin for six weeks. I will be adding Malarone soon. Also on Cryptolepsis and Smilax.
I have Babesia Duncani. Just started getting air hunger (been in treatment five years for the other tick diseases, just turned positive for Duncani).
I know Babesia bursts red blood cells. I've been reading Schaller and Singleton books, etc.
My question - do you think this is due to the Babesia itself or Babesia die-off from Alinia?
I have left messages for my LLMDs. My internist is against Babesia treatment for me because it's hard on the liver, etc (former liver damage from Ketek) so I'm trying to get some answers for my internist to calm him down.
Is there anything I can take to help protect my red blood cells? I know Bea here on Lymenet has mentioned Red Root tincture for capillaries. I know it helps detox lymphatics.
I read that elevated hematocrit can be related to hypoxia (lack of oxygen in tissues). My air hunger is very bad - from nothing to very bad quickly. Wonder if this is why the hematocrit is high.
Thank you! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
He does have some of the symptoms. He also had a stomach ulcer at age 12.
At his next LLMD appt I am going to address this. Not sure if he will listen but am concerned.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Amy,
Thanks for the info on Polycythemia vera. I was not familiar with it. I don't have many of those symptoms (no h. pylori - but five years of burning since the tick bite, and yes, possible hypercoagulation although most Lyme patients have that, especially Babesia).
Because I'm very positive for Babesia Duncani, and my red blood cell abnormalities began only after Babesia treatment, I think that is the relationship for me.
I will post when I hear back from my Lyme doctors.
I haven't had the Fry test done yet, although one doctor has the kit and thinks I should - I'm just trying to come up with yet more money!!
Did Babesia show up in any of your son's testing?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
posted
No Babesia didn't show up. But Mycoplasma did and I think that also has to do with the red blood cells. I can't remember what I read?
I think both Babs & Myco get into the red blood cells? Something like that.
So I wondered if it could cause another condition? As we all know Lyme & Co's can do!
I have that Fry Lab test sitting here too for myself. But with 3 of us sick I am last to get it done. Money reasons too. Kids come 1st!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Amy,
Bart is involved with red blood cell and vascular issues, too, according to one of my LLMDs.
I don't know about Myco, but it sounds like you have researched that and it's another red blood cell issue.
One of my LLMDs emailed me and said not to panic yet, get the test redone in two weeks, perhaps I'm growing some new red blood cells. But given this all happened with Babesia treatment, I don't know.
I'm awaiting to hear back from my main LLMD and will let you know what he says.
I feel like I'm finally herxing dramatically on Alinia so maybe that is all coinciding with the blood cell test results.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Where can I buy Alinia. My llmd told me to buy it but he does not know where to get it.
Treated lyme/babeisa for 7 years without cure. Now have drug induced lupus and off medication. Slipping.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Wait, so your RBC's are high then, right? You said elevated? Babesia is supposed to cause lowered RBC's.
I am interested in this though because my RBC's are always on the high side of normal. I had elevated ones as well, I think my crit was 17 or 18 back in 2003 when my anxiety was through the roof (didn't know I had Lyme yet, just thought I had terrible terrible anxiety constantly).
My crit is about 15.6 now.
Anyone know what can cause high RBC's? My doc said I looked anemic and being vegetarian, she checked it and that's when she found it so elevated. I was only a couple of months postpartum and have always been told I don't lose much blood at all in childbirth, so maybe it made it higher, but you'd think it would still be in the mid-normal range.
If anyone has any idea let me know, I've wondered for years. It does tend to go down to 13-14 during my pregnancies though.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Ocean, that's why I'm perplexed. Babesia should have lowered things, not elevated them as in my case. I'm waiting to hear from my main LLMD. My local LLMD thinks maybe my body is making new, but small, red blood cells - I guess to replace the ones being destroyed? She isn't sure.
I just emailed with a Lyme friend who has been on intensive Mepron treatment several times and her counts have been low. So, yes, this elevation is weird.
I have Babesia Duncani. In the Schaller Babesia book, he said Duncani doesn't cause anemia, it can fill the lungs with fluid (lovely). So maybe this strain of Babesia doesn't lower the red blood cells? But obviously something is going on with me because I've never had abnormal red blood tests.
Lymewreck, we have an Alinia Group thread going - no one has posted for awhile but search it - it was started by Michael_Venice - and a few people have purchased Alinia from Canada and even India.
Some insurance companies pay. I have a positive Babesia Duncani test so that helps, I think.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Jill,
Interesting about B Ducani. I was told I have Babesia Canis (yes the one that affects dogs, but also can and does infect people) with electrodermal testing, but tested negative with Igenex, because it only tests for 2 strains, not B canis.
I have wondered if my body also makes 'extra' if they are being destroyed. Do you appear to be anemic? Is the 'pink' part of your lower eyelid very light? Pale skin? I have that.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Ocean,
I am extremely fair-skinned, but have never really looked anemic and have never tested anemic.
I'll definitely let you know if and when I hear back from the doctors - it usually takes awhile!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Jill,
I also have pale skin. I don't test anemic either, actually higher than normal. It's very weird. I would definitely like to see what you find out though, it seems I have the same problem. Do you know exactly how elevated the hemotcrit and RBC reading is?
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Ocean,
My elevations were only slightly out of range, but hematocrit being the worst of the three. I can dig out the results and PM you if you're interested.
My main LLMD just faxed me and thinks I was dehydrated and should retest. But I drink water non-stop from morning to night - I've even had doctors say I drink too much water. But my cardiologist said I'm dehydrated - she could tell from my pulse or something.
One of my doctors thinks I have that MSH deficiency or whatever Richie Shoemaker talks about in Mold Warriors because the constant thirst and dehydration is part of it (no, I'm not diabetic).
I still think it has to do with Babesia treatment because nothing else has changed except beginning that. I'm still drinking the same amount of water.
I'll let you know what happens when I retest in a couple of weeks.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
do you smoke at all? that can slightly elevate hemocrits, as can some kinds of breathing/asthma issues.
And also dehydration. I drink tons of water, and have at times still had a heck of a time staying hydrated. Goes right through me.
Posts: 322 | From Venice, CA | Registered: Sep 2008
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Michael,
No I don't smoke and I stay away from smokers.
I think the air hunger I recently developed is a possibility for the elevated hematocrit. I looked online and it talked about elevated hematocrit being due to various pulmonary problems (which I don't have) but also due to hypoxia, which is lack of oxygen in the tissues. All this air hunger, which suddenly came on, makes sense that my body is gasping for air due to the Babesia or die-off.
The dehydration issue is common in people with Lyme, CFS, mold, etc. I carry water everywhere I go, drink it all day long, drink almost nothing else, but am still dehydrated. It's something that the infections or genetics must be causing.
Have you noticed any lab test changes while on Alinia?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Jill E.,
My hemoglobin is 15.4 (range 11.5 - 15) and my hematocrit is 44.4 (range 34 - 44) so they are slightly elevated too. My RBC is completely within the reference range at 4.86 (range 3.8 - 5.1).
Hematocrit and hemoglobin levels are always a little high for me and I have been told it is probably a lab error, but I don't know. They are always that way. I have Babesia microti.
I am curious too.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
Your levels--they are just slightly elevated, right?
I've had odd levels of all kinds of things, ever since I got sick. Before the lyme diagnosis. It seemed every 2 months I had some result that could mean some catastrophic problem.
I had some elevated calcium for a while, and that scared me...and on and on. It seems common here, these various odd things.
Though, considering the damage some drugs have done to you, I think you're absolutely right in staying on top of it all.
Posts: 322 | From Venice, CA | Registered: Sep 2008
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Michael,
I didn't mean to worry you. I have my labs checked very frequently given my past liver issues. At least my liver is OK on Alinia so far!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic