Has anyone else been diagnosed with blood clots after being diagnosed with and/or actively treating Babesia?
The reason I ask is that I just got out of the hospital after 6 days, with a diagnosis of multiple blood clots (small and medium sized) in both lungs.
I am actively treating babesia and just got off a 2.5 week course of an intense cyst buster and babesia killing oral antibiotic regimen using Dr. J. (Wash DC) pulsing protocol.
1. The only symptoms were shortness of breath with low activity, to severe shortness of breath on exertion. I did not have classic symptoms of calf pain of jabbing/sharp pains in lungs.
2. My oxygen saturation was always within a normal range, even during my extreme, asthma-like episodes of shortness of breath during heavy exertion.
3. Shortness of breath, at least the mild parts was easy to explain away because Babesia can cause shortness of breath. It was the extreme shortness of breath that was starting to erk and scare me!
I waited 6 days, 3 of those 6 having gone shopping or out to dinner with my fiance and experienced the extreme shortness of breath. I finally called the Lyme nurse triage line out of frustration and was hoping to get some peace of mind that the shortness of breath was a normal reaction to a large kill of babesia.
The Lyme triage nurse said shortness of breath was never normal, even with babesia and I needed to be evaluated. My local doctor concurred.
In the ER my D-dimer blood test was elevated and that was the saving grace. I was then put in a cat scan and the blood clots found. If the blood test had come back negative, I would have been sent home.
I am now on Lovenox until my coumadin levels come up to therapeutic levels. When will my health start stabilizing!?1?
-Edessajarrue
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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posted
Blot clots in the lungs are technically called pulmonary embolisms.
Bloodclots in the heart are called myocardial infarctions.
Bloodclots in the spleen are called splenic infarctions.
I have just been rereading the CDC reporting guidelines for babesia.
Myocardial infarctions are listed on the Babesiosis Case Report Form as a rare complication of babesia.
There is mecical literature mentioning both splenic infarctions and splenic ruptures in babesia.
As far as pulmonary complications -- ARDS -- which is a form of lung failure -- is listed as a rare complication of babesia on the Babesiosis Case Report Form.
I know there have been reports of other pulmonary symptoms of babesia in the medical literature, but right now I don't have all my files transferred over to my new computer.
It is my understanding that any infection can cause hypercoagulation. The Hemex lab -- not sure if it is still around or not -- used to have a test called ISAC -- Immune System Activation of Clotting.
I would also ask your doctor to test you for genetic clotting defects.
I am so glad that you did not ignore your symptoms and that the docs are monitoring you closely.
Babesia is a very hard infection to treat. And it can be a chronic relapsing infection. All I can advise is to monitor symptoms and try various cocktails of antimalarials, anitparasitics and killing herbs. And of course continue to monitor your clotting issues.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you Lymetoo, Carol and Bea for your supportive replies. It has been a rollercoaster of research for me since I got home.
I had to personally request a Hematologist from my in-house hospitalist doctor who wanted to get out of my room as fast as possible. I asked questions. He didn't have answers. Run away, Run away! Pathetic!
My hematologist/Oncologist in the hospital said that she hadn't heard of Babesiosis causing blood clots specifically.
Her Colleague, who is isn't a hematologist but is an Oncologist, said that sludge in the blood from killing off bacteria could be a cause of blood clots. Anything bacteria related/parasitic related in the blood could do this she suspects.
Bea: I do have a copy of each of the MHTFR gene mutations which I have read that can be an indicator of blood clotting disorders.
My GP, is inclined to keep me on coumadin until my tx is complete for Babesia.
I do know my spleen is grossly enlarged, but as far as we are aware there has been no splenic clogging (to use real technical terms here LOL) or blockages. The symptom list is in my head for if I start feeling any pain in this area.
What scares me the most is that the hospital stopped all my supplements and probably would have stopped my antibiotics if I hadn't been on my week off of them.
A year ago, I had to fight for certain medications that were prescribed for me. Forget about most of my vitamins, even the ones that work in synergy with the medications for the MFTHR mutation.
I told them to send in the doctor to talk with me directly about why they needed to keep dosing me during my stay. I think they got scared because they started dosing me again instead of coming to talk to me.
Bea, if you have continued to read this, I can only hope that I have someone as strong and knowledgeable as you fighting for my as you did for your husbands life, if ever need be.
And I hope if I am ever put in your position of fighting for a loved ones life, should I have the strength, determination and will to keep on fighting, even when others think 'game over'.
-Edessajarrue
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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poppy
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posted
The trouble is that very few non-lyme docs are going to know anything at all about babesiosis. And if they run to their computers after seeing you they will see that the CDC says a short treatment will knock this out. So, can't rely on much help except for specific issues like you had.
Posts: 2888 | From USA | Registered: Mar 2004
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I just had to have a chest X-ray as my pulsox is way too low due to Babesia.
Hope it doesn't take too long for the doctor to get the results.
Being on oxygen to be able to breath is scarey!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Dogsandcats
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I was tested for Factor V Leiden when I was first treated for Lyme. It can increase the chance of blood clots, usually in your veins. You can get one "copy" from your mom or dad or a "copy" from each which gives you two copies. I tested for two copies.
It was explained to me what this had to do with Lyme, maybe you could ask your doctor if it would help to be tested?
Sorry I can't remember. Kind of creepy knowing I have two.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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payne
Frequent Contributor (1K+ posts)
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posted
my major life threatening prob lem is :
Thick blood is the result of fibrin being deposited in the small blood vessels. Fibrin formation is the last step in the clotting process that stops bleeding when blood vessels are cut. Normally, long strands of fibrin weave a mesh around platelets and blood cells to form a clot that plugs the break in the wall of a vessel.
A very complex series of reactions activates the clotting process. The release of thrombin ultimately results in the production of a substance called soluble fibrin monomer (SFM). SFM is a sticky protein that increases blood viscosity (thickness) and results in the deposit of fibrin on the endothelial cells lining the blood vessels. Normally, a single burst of thrombin would generate a large amount of SFM that would produce strands of "cross linked" fibrin, resulting in an actual clot. However, in CFS/FMS and other chronic conditions, continuous generation of low levels of thrombin can occur. The result is hypercoagulation. Causes and Development There are at least three possible causes or contributing factors:�Virii, bacteria, mycoplasmas, and/or parasites activate certain antibodies in the immune system that trigger the production of thrombin, generate SFM and result in fibrin deposits. �Genetic coagulation defects can lead to hypercoagulation. White people are susceptible to this and black people have a resistance to it. �Chemical exposure can result in changes that trigger the coagulation process. The results of this thickened blood are:�When fibrin coats the walls of the capillaries, nutrient and oxygen delivery to muscle, nerve, bone and organ tissue is compromised. �The fibrin coating the capillaries and producing thick blood can make virii and bacteria less accessible to treatment. �Thicker blood is harder to pump. �By depriving the gut of proper nourishment, hypercoagulation may be a major factor in IBS. If the bowel is deprived of blood, cells will die too rapidly. �The endothelial cells lining the capillaries are the source of heparans, the body's natural blood thinners. When fibrin coats these cells, the heparans cannot be released, reducing the body's ability to dissolve the fibrin.
Diagnosis and Tests
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Poppy! Scary for you!! I hope that they check for everything. Low oxygen levels are scarey! Keep us posted on how you're doing on the main/medical board so you don't get lost in this thread. Definitely want to know what they find or don't find. Big Hugs!
CatsandDogs - I've run across Factor V Leiden in my searches. I will make sure this is one of the tests that was ordered in my blood panel from the hematologist. Thanks! Does this also mean you are on anticoagulants for life then?
payne - Absolutely fascinating information on how our blood clots and that certain chronic illnesses can trigger an over-reaction of thrombin or fibrin releases on a consistent and constant basis.
Do you have any interesting links on this or is this what you've gotten by piecing together your own reasearch?
My next hematologists appointment is in about 2 weeks, I will definitely be better educated by then!
You've opened up a whole new area of research that I can delve into and arm myself with for doctors appointments. (Now won't they be lucky, LOL)
Ooops,just have to run for my wonderful Monday INR blood draw, so no time to edit this. Excuse my errors in syntax and such.
Hugs!
-Edessajarrue
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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springshowers
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posted
I just posted on other thread For babesia and Protomyxzoa Rheumatica I am put on aspirin therapy to prevent blood clotting And specially was told There is a risk ESP with Protomyxzoa Rheumatica
So people who don't know should talk to there Doctors.
Its a serious risk and during treatment I was Told even higher risk
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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payne
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Xarelto is new drug that no INR weekly is needed... after being on cumadin and hating the vit;K factor.. Xarelto you can eat anything anytime... so far so good, my LLMD loves the idea of the thinner the Blood the deeper the meds go.. in to all the tiny veins deeper penatration for antibiotics to get to the spiro's = better treatment.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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Dogsandcats
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I don't take any meds for Leiden. Amazing with all the surgeries I have had, that has not been a complication.
I had one Doc say take the baby aspirin and said not to.
Good luck to you!,,
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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I have also had multiple surgeries in the last 3 years. My fiance counted them up in his head one night (he has an amazing recall memory) and said it was over 30.
It wasn't until AFTER my booster tick bite in 2011 that I really started having issues with healing and now, blood clots.
Please be aware of your body and symptoms. If anything flares to an unusual point, get it checked out asap. Try not to be like me and explain it away.
As I'm prostrate in a chair trying to catch my breath from walking across the room, I'm telling myself that my shortness of breath was Babs; After all I had just finished a big pulsing of anti-malarials the last 3 weeks. I just *knew* my body was trying to speed up production of red blood cells that had exploded during the kill. LOL
I felt like a very smart rat in the maze of Lyme. Buzzzz! How wrong I was!
End note: Be safe.
Hugs!
-Edessajarrue
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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CherylSue
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posted
Any updates on blood thinners and hypercoagulation?
Posts: 1954 | From Illinois | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
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- PRICKLY ASH BARK
No links set for that but a few file notes below. Prickly Ash Bark is in many supplement formulas for lyme / TBD. Do not use during pregnancy or if taking blood thinning medications, though.
Then you can search what LL herbalist & naturopathic authors write about it and then talk to your LLMD or LL ND about it. Never add this before talking with your doctor - and be sure they know all the Rx you are taking, for any reasons.
Not sure if Stephen Buhner address this one particularly yet I'm sure he has addressed the topic in his articles / web pages / books. You might search there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CherylSue
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Thanks, Keebler.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Keebler
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- Hope it helps. And, studying this will lead to so much more detail, too.
We have so many choices, yet I know it's hard to find / access the kinds of doctors who are educated and experienced in the kind of medicine that I find most valuable.
Yet, many LLMDs are very much aware of various tools from all corners of medicine, too. Be sure to talk with your LL doctor. Good luck. -
[ 05-03-2016, 10:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Some good links from a search at Google for:
babesia "Prickly Ash Bark" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- As this thread is 3 years old, checking on Edessajarrue, good to see the rough patch passed. There are some recent posts by Edessajarrue about 6 weeks ago. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CherylSue
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Yes, I checked on her, too. Thanks.
Posts: 1954 | From Illinois | Registered: Aug 2007
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