posted
My mother who is 80 was bitten by ticks several times in Florida years ago. It seems like she has had various health issues. She has had atrial fibrillation, collagen disease, high liver enzymes(brought under control with milk thistle), sciatica, neck pain, etc. My sister and I have always thought she had lyme disease but she would never have it checked. In April her blood work showed good iron levels but her hemoglobin, hematocrit, and red blood cells were showing a decrease. They have been decreasing ever since (Aug). The doctors were decreasing a medicine she was on but that didn't help. They gave her a blood transfusion at the beginning of August which helped a little. The 22nd she was so weak she could hardly walk. She went to the ER. They gave her a blood transfusion which perked her up. I visited her today, on Saturday, and this morning they gave her another transfusion. They had done a colonoscopy and endoscopy and found nothing. She is having dark stools. Monday morning they want to put a small camera down her to check her in the small intestine to see if something shows up there. They think she has hemolytic anemia. I feel the cause is lyme - babesia. Don't know what to do. I am afraid she is going to die. On blood transfusions she is fine, talks fine, moves fine, eats well, laughs and acts like nothing is wrong. The doctors are puzzled and groping for answers. Why won't they think of lyme disease? Family members have it and like 5 co-infections. Any suggestions as to what to do. Time is running out. Afraid the hospital is going to say there is nothing more we can do for your mom and stop the blood transfusions. My father died 2 years ago of a respiratory problem like COPD where he was weak and was losing oxygen. The hospital tried everything for 3 weeks and then said there was nothing more they could do and that they had him on so much oxygen he would need a truckload to leave there with it. We said our good byes and they slowly withdrew the oxygen and gave him pain meds to keep him comfortable. I don't want them to repeat this with my mom. Any suggestions?? We are in a large hospital with specialists.
Posts: 20 | From Pennsylvania | Registered: May 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Breaking this up for easier reading...
My mother who is 80 was bitten by ticks several times in Florida years ago. It seems like she has had various health issues.
She has had atrial fibrillation, collagen disease, high liver enzymes(brought under control with milk thistle), sciatica, neck pain, etc.
My sister and I have always thought she had lyme disease but she would never have it checked. In April her blood work showed good iron levels but her hemoglobin, hematocrit, and red blood cells were showing a decrease.
They have been decreasing ever since (Aug). The doctors were decreasing a medicine she was on but that didn't help. They gave her a blood transfusion at the beginning of August which helped a little.
The 22nd she was so weak she could hardly walk. She went to the ER. They gave her a blood transfusion which perked her up. I visited her today, on Saturday, and this morning they gave her another transfusion.
They had done a colonoscopy and endoscopy and found nothing. She is having dark stools. Monday morning they want to put a small camera down her to check her in the small intestine to see if something shows up there. They think she has hemolytic anemia.
I feel the cause is lyme - babesia. Don't know what to do. I am afraid she is going to die. On blood transfusions she is fine, talks fine, moves fine, eats well, laughs and acts like nothing is wrong.
The doctors are puzzled and groping for answers. Why won't they think of lyme disease? Family members have it and like 5 co-infections.
Any suggestions as to what to do. Time is running out. Afraid the hospital is going to say there is nothing more we can do for your mom and stop the blood transfusions.
My father died 2 years ago of a respiratory problem like COPD where he was weak and was losing oxygen. The hospital tried everything for 3 weeks and then said there was nothing more they could do and that they had him on so much oxygen he would need a truckload to leave there with it.
We said our good byes and they slowly withdrew the oxygen and gave him pain meds to keep him comfortable. I don't want them to repeat this with my mom. Any suggestions?? We are in a large hospital with specialists.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry your mom is having so many difficulties. And worse, they don't seem to know the cause of the symptoms by what you are sharing. You must be hurting and I feel for you.
Not to state the obvious here, but have you spoken to any of the doctors or hospital staff about your tick borne disease concerns? Have they refused to consider the possibilities?
You might consider once she leaves the hospital to go home- or in advance of that time- make her an appointment with a doctor who knows Lyme ASAP.
For now it may be best she is in the hospital. At least they are still actively looking for something that will help her.
Caring for her the way you do means a lot to her I am sure. She is lucky to have you for a daughter.
posted
Tincup, I am so sorry for not breaking up my post. It has been some time since I have posted on here.
And forgot all about the need to do this.
Thanks for doing it for me.
We have not mentioned lyme to the doctors because was just letting them do their thing.
Kind of afraid to because know that is the last thing they would think of if at all and everyone looks at you like a monster when you do mention it.
Posts: 20 | From Pennsylvania | Registered: May 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You will likely get no help in a hospital for lyme and company. They have no clue about lyme, babs, etc. I would book her an apt with a lyme literate specialist fast. Bea went through hell with the hospital her husband was in. They would not recognize his babesia, even though she told them he had it. Sadly, he passed away.
LLMDs are booked out so ask to be put on their cancellation list (explain your mom's situation). Be sure you get an ILADS specialist, and I would go for the best she can afford (worth it). Then get your mom out of that hospital in time for her apt. Babesia, lyme and other co infections hardly ever show up in a blood test. Therein lies the problem with evidence based medicine (our current system). This is why a positive blood test for babs is important, especially for someone going downhill (hospitals won't accept the diagnosis without it).
There are babs herbs your mom can take. The hospital won't have a clue about them, nor will they administer them if they don't think she has it. Even if they test her, which they could try, it can be difficult to get a positive test (but might be worth a shot).
Your mom can try artemisinin (art) and cryptoleptis (crypto). Most babs patients are on artemisinin or artemesia. Stephen Buhner has more recommendations too. I've taken mepron, art, and now malarone and art for mine, and sometimes crypto.
If my mom was going through this I would pull her out fast and put her on herbs until her LLMD apt, but that's me. I'm no doc, but know more about babs than any hospital does because I have it and am being treated for it. The hospitals just follow idsa guidelines, which are obviously antiquated to say the least. Follow your gut, and be strong. You can do this.
www.lymediseaseassociation.org will email you some names. Be sure to check the ILADs box or pick one who is ILADS affiliated.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I would sure suspect babesia in cases of people with previous untreated tickbites and current hemolytic anemia. Why not ask the hospital to test for this, and then move on to lyme doc as fast as you can if they decline or the result is negative. Tests do not pick up all cases, and typically they will not even look for both microti and duncani species because they still think duncani is only in the west (not true).
Taking artemisinin alone can lead to resistance....better to be on two drugs.
And just a note of caution. It is now realized that people are getting babesia from transfusions too.
Not sure I would give this article to hospital because they are saying most cases in NE and upper MW, so they might discount tickbites in FL. But then the official word is that lyme and babesia don't occur in the south. Wrong, of course.
As far as transfusions are concerned, I have the impression that blood collected in one area might not necessarily stay in that area. If this is the case, then one could get transfusion babesia anywhere.
Posts: 2888 | From USA | Registered: Mar 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I agree with Poppy, except that I was on art and mepron and still became resistant to art, then eventually mepron. The key for me has been to pulse it, for example 3-5 days on and 2-3 days off. I would check out Stephen Buhner for herbs. He has some great books out too. http://buhnerhealinglyme.com/
Poppy also brings up a good point about the transfusions. I'm not sure they are doing her a bit of good. She's getting whatever is in the blood--all sorts of bugs are passed through blood that people don't even know they have.
I've made the most progress with parasite herbs, tinctures, and parasite meds (babs is a parasite, so this makes sense). There is a great thread here called THE PARASITE WARRIOR'S THREAD with lots of info on it.
Also, hemoglobin, red blood cell and hematocrit have been low on me for years (part of babs).
Hang in there Bonbon. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
If she has hemolytic anemia, a transfusion would be indicated for sure, so I disagree about the transfusions not being helpful though yes, they are risky (people *get* babesia from transfusions: the blood is tested for babs but the tests are likely not that accurate and do not test for all strains). I would definitely suspect babesia, and possibly babesia duncani. If you look on PubMed there are various abstracts about hemolytic anemia and babesia. You should show the doctors abstracts and urge them to test.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
If she has hemolytic anemia, a transfusion would be indicated for sure, so I disagree about the transfusions not being helpful though yes, they are risky (people *get* babesia from transfusions: the blood is tested for babs but the tests are likely not that accurate and do not test for all strains). I would definitely suspect babesia, and possibly babesia duncani. If you look on PubMed there are various abstracts about hemolytic anemia and babesia. You should show the doctors abstracts and urge them to test.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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