I have been trying to figure out why I am getting more and more enemic with every test. Over the past year my blood values are getting worse. I am now down to 10.0 Hemoglobin, and 33.3 Hematocrit. The MCV is now 74- below normal. The RDW is 18- above normal. The Ferritin is also on the low side,15 on a scale of 10-291. Has anyone else had this problem? I am trying to read all I can about this, but I am only getting more confused. I'd love some input on this.
Posted by sadie420 (Member # 9294) on :
Are you still menstruating? IF so, you may need an iron supplement.
Sadie
Posted by Dolores (Member # 10009) on :
Yes I am still menstruating, but my doctor says that it's not enough to make my blood levels drop like this. I've been taking iron, but it isn't helping at all.
Posted by rcs2 (Member # 9663) on :
Hi Dolores,
Sorry for your problem.
Have you been tested for babesia? They live inside your red cells and they cause hemolysis.
Hope you feel better soon,
[ 27. September 2006, 02:02 PM: Message edited by: rcs2 ]
Posted by Dolores (Member # 10009) on :
Thanks for all your replies. No I have never been tested for any other bacteria. I was only tested for Lyme back in November 2005. It was positive for "active stage" Lyme. No antibodies at all. Also would a hemotologist test me for other bacteria or just treat the anemia with whatever protocol they commonly use?
Dolores
Posted by sadie420 (Member # 9294) on :
I second testing for Babesia as a co-infection. Best to have it done through a reputable lab. I think IgeneX best, some people use Bowen.
Sadie
Posted by savebabe (Member # 9847) on :
Also check for pernicious anemia. They found my anemia through a protein binding nuclear test. They believe it is related to my thyroid. Feel Better
Posted by DolphinLady (Member # 6275) on :
Perhaps you're not absorbing nutrients as well.
Also could be caused by internal bleeding, ie ulcer.
Posted by serendipity (Member # 8474) on :
Microcytic anemia (anemia with low MCV) most common causes -poor absorbtion of nutrients -excess bleeding (digestive system such as ulcer in the stomach or anywhere lower in the intestines) Bright red blood or tarry stools is an indication that you likely have bleeding somewhere in your GI tract. -excess bleeding during menstruation, fibroids -Babesia
These are the most likely causes. Have your doc check to see if you have blood in your stool. Simple test. The babesia can be present with negative tests (I had negative tests but herxed on herbs for babesia).
Has your doctor also checked vit B12 and folate leves (although deficiences are usually with a high MCV).
You need a good primary doc to look at this. Anemia can excerbate the fatigue associated with lyme. A hematologist would be even better. Unlikely the hematologist would check your for babesia, but you can raise the issue with him.
[ 29. September 2006, 10:56 AM: Message edited by: serendipity ]
Posted by hardynaka (Member # 8099) on :
The previous post explained most of what I wanted to say.
I just wanted to add I never had anemia problems before lyme, even with fibroids and excess of menstrual bleeding. It came out that after lyme, my ferritin levels dropped down to 6 (very very low), I had to take iron injections every 2-3 months or extreme fatigue would just hit me.
My doctor said that anemia would have appeared if I had left ferritin levels so low.
I got babesia too (I reacted to artemisinin strongly and to Riamet).
Now it seems babesia is not active (or dead), I'm still on iron supps, but my iron levels are still not wonderful, but I don't need the injections anymore.
I also take enzymes, Omega 3 etc, which make the blood thinner, so I think it causes more spotting than usual too (with my fibroids). So this could be the reason in my case (?).
Some people react well with homeopathics, when the problem is in iron absorption.
Good luck
Posted by timaca (Member # 6911) on :
Dolores~ Your menses CAN make you lose LOTS of blood. That was my issue. My ferritin was 5, and that was AFTER I was on iron for 4 months. I ended up taking 200 mg elemental iron daily. Yes, daily. You may need to do the same. Then have your CBC done monthly (and include a ferritin level). If it does not come up even a little in a month or 2, then you may need a uterine ablation or hysterectomy.
I ended up with a uterine ablation. The docs actually did a CBC on me before and after a period and where shocked by the blood values (they had dropped a lot). I was also checked to make sure I was absorbing iron (I was). It was all due to blood loss.
It took 2 years after the uterine ablation for my ferritin level to get to 100. Then my doctor allowed me to quit taking iron supplements.
Ask your doctor to find Dr. Barton's article in Conn's Current Therapy on Iron Disorders. I don't know the year of the Conn's...but it was in the last 3 or 4 years. He states that a ferritin level should be over 50 ng/mL NO MATTER WHAT THE REFERENCE RANGE IS OF THE LAB.
Good luck....Timaca
Posted by Aniek (Member # 5374) on :
Dolores,
Babesia is a parasite, not a bacteria.
While it is important to purse a Lyme/coinfection cause, I would also recommend seeing a hematologist. It's possible this is either unrelated or that the hematoligst can help you raise your blood levels.
Posted by AP (Member # 8430) on :
If you are taking Rocephin, consider switching to something else. Rocephin almost killed me while I was on it - even with 900mg of elemental iron 2x daily.
Primaxin worked wonders for me during my second round of IV therapy. I am still anemic (my ferretin level drops to 12, then peaks at 14 before going back down), but not on the verge of death, and I feel quite well these days. My LL hematologist has planned to keep me on high doses of elemental iron until my Ferretin is above 100 (it may take years to get there though).
Posted by timaca (Member # 6911) on :
AP~ Are you sure about the 900 mg of elemental iron???? That is a ton. The 200 mg I was taking was a lot...
It took me about 2 years to get my ferritin level to 98 ng/mL. Now I am just taking iron every so often (I do take a multi-vit with iron daily). And I will check my ferritin level every 6 months.
Timaca
Posted by AP (Member # 8430) on :
Yep, I'm sure... I've got a written RX for it.
Posted by timaca (Member # 6911) on :
AP~ Iron is measured in two ways...as ferrous sulfate or gluconate (what it's compounded with) and as elemental iron. My guess (and I could be wrong) is that your prescription is for 200 mg ferrous sulfate...not elemental iron.
I was taking 65 mg of elemental iron 3 times daily, equal to 975 mg ferrous sulfate. I was also taking a multi-vit that had 18 mg elemental iron in it.
SO...check to see what exactly you're taking. I would be really, really surprised if you are on 900 mg ELEMENTAL iron.
Timaca
[ 05. October 2006, 02:22 PM: Message edited by: timaca ]
Posted by Lisianthus (Member # 6631) on :
I also vote for Babesia.
Babesia symtom list:
20. What signs and symptoms would lead a doctor to suspect a Babesia infection in a patient? How many strains of Babesiosis have been identified and how many are commonly tested for in commercial labs?
The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue* Arthralgias* (aching joints) Myalgia* (muscle pain) Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* (enlarged spleen) Dizziness* Nausea and vomiting* Cough* Dyspnea* (difficulty breathing) Fever* Chills* Hepatosplenomegaly* (enlarged liver) Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* (low platelets in the blood) Hemoglobinuria* (red cell breakdown, with release of hemoglobin in the urine) Hyperesthesia* (over sensitivity to touch) Pulmonary edema* (fluid accumulation, swelling in the lungs) Encephalopathy* (alters brain function) Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia*
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.