Topic: b.duncani, babesia, having severe blood flow attack, now what??
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OK. SO. I have some huge revelation for myself and I am hoping someone else here knows something/anything . without going through my LONG history (some of you know some of it) , this is what just happened this past week. Last month I had center chest pa
ins which led me to ER which ruled out heart attack w/ incl. stress test, which then led to GI consult and elevated enzymes and inflammation markers which led to MRI that showed everything "normal". So now GI drs are baffled and next apt. is May 25. SO last night I woke to horrific leg cramps from hell that went from left leg then right leg in separate episodes.
I could feel then afterward my body feeling like a cold rush throughout incl. head, neck, arms, chest, legs, etc. I couldn't sleep so I started researching on line and found out some interesting info when I plugged ONLY SX as night leg cramps. Periferal Arterial Disease was listed- something I had never looked into.
I searched and found it sounded exactly what happened to me in the attacks. (and has been for years but not as bad until now). I then searched "Hematologic manifestations of babesiosis" and from there incl. search for "HLH" and "DIsseminated intravascular coagulopathy" which both seemed to be something I have. (w/ no jaundice).
I realized I had not taken my last 3 doses of Nattokinase (works similar to aspirin for blood thinner) due to my negligence š and I was in the middle of a babs freak out! This morning I feel like a train hit me and I am still having these cold spot feelings in my body. I am totally freaking out because I have no TBD dr. at the moment (put on hold to do testing for MCAS) and I now realize I need one ASAP.
Should I call infectious disease at the hospital??
How do I find a good babesia place??
I am so worried now that I let my babs TX go for a year that I am dying. For the first time in my life my ANA was elevated and I have the genetic lipo blood issue which im sure makes this all more likely. There seems to be no one near me! but now I realize this is my life at stake and I want to be alive for my daughter's wedding next month. This is the worst timing ever!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I will send more later- I have to go to work now..... but SOME of my my lab work (some) recent:
pos. ANA for the first time in my life! Complement C4a- 12,480
Pos. Smooth Muscle AB test
elevated liver enzymes incl. all Phos. at 400
GGT is high
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Yes, cause for concern, but I bet my bottom dollar that you will be fine once you get back on the natto full time.
Do you have a lot of other babs symptoms?
Some of us are left with changes in our bodies that we just have to deal with. Take care of what you can and keep on living!
My ANA was positive when I first began treatment 21 years ago. It has not showed up again.
I'll look up the GGT as I don't remember what it is.
Take care and take a deep breath!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks lymetoo im going on no sleep today also, so I am double tired. sleep tired and health tired.
I have a lot of symptoms. I just can't tell what is babs and what is mast cell any more. I am getting pains in my left side under ribs now after having high tside pain off and on for 20 years.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Ah, Lyme and company. . .our nemesis. . .never stops giving. Sounds like an active infection. You need a LLMD for guidance. I feel your pain and fear.
But you will fight this once again š
As for seeing an Infectious Doc, if only it was that easy. How hard is it to put a drop of blood on a glass slide and study it under a microscope??????? ID Docs rely on outdated antibody tests that only check for 2 strains., even when their patients are immune compromised and donāt produce antibodies. So I myself wouldnāt waste my time with a straight up denier. We are way past the abuse and incompetence.
Unfortunately it is up to ourselves, severely sick, to find the best doctor willing to help us.
I also have a raging active case of Babs. I have thrown the kitchen sink at it and no positive change what-so-ever.
Artemisinin (woodworm), black walnut, GSE, OLE, Pau DāArco, Black Cumin, Allium (garlic), Oregano, Bactrim, Arith,, Doxy, Plaquinel.
Mepron and Malarone work. But you cannot access it anywhere on this planet unless ordered by a Doc, namely a LLMD.
So back to the LLMD.
As for sleep, another tough one. You will not get well unless you get deep sleep. Of coarse you know this but your body wonāt cooperate.
I never dream because I never get into REM mode. Constant broken sleep. Always brain fog and absolutely no short-term memory. I get so mad at myself but have no energy to go into the kitchen and hit myself over the head with a frying pan to knock myself out.
My ANA was positive too and also have hyper-coagulation blood. Itās Babs baby.
Mepron and Malarone work.
We are probably the type of patient that requires open-ended treatment for life. At least thatās what I think because I canāt keep going through this, and you canāt keep going through this. We are all in this together. š
Posts: 2977 | From Florida | Registered: Nov 2016
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Do either of you have access to a rife machine? Rifing for Babs helped my hubby. He noticed a difference almost immediately.
He still needed other things to really hit it. Its been so long ago, I forget what all he took....
Posts: 2248 | From USA | Registered: Aug 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
BONNIE!!! I hear ya! awwwwwwwww
I am sorry you are suffering. you are right about everything you said. that is why I am in panic mode. for the first time I can FEEL a very bad thing babs is doing to me.
I can literally feel my blood being blocked and the rush of cold like someone sprayed my insides with the stuff drs. spray on your foot when you have a wart to get rid of.
mine has been active for some time and I put it off. so stupid!
I sleep better since having the "green" card- RX pot. it helps me dream. I am improving in so many ways for the last 1.5 years. and now this.
LYMETOO you are right about the nattokinase. I am taking 200mg four times a day right now starting yesterday and the symptom (this big one for me) is lessoning.
MannaMe I have no rife and forget all about how I'd get one, but thanks. I think I need a direct hit on this.
I did call my old LLMD who is functional med., but I think she is strung out right now from working solely and feel like although she knows SO MUCH she is kind of not willing to RX pharm. I think I need pharm at this point.
??? ISadly I have been so focussed on MCAS that I know nothing of what is currently being done for any TBD! My brain can only do so much anymore.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Maybe you can try a rife machine. I still have a phone number. You can get it for about $500 and it works.
I get left-sided pain also .. in MCAS you can have spleen and liver involvement.
I got rid of babs with artemisinin and zith. It went away in a few months. Prior to that, I had used quinine and clindamycin off and on for two years. (to no avail)
I hope you can get what you need very soon!
Bonnie too!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
A rife machine never appealed to me.
do you think that means I shouldn't try it? IDK....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so now my veins are acting crazy. last night I looked in the mirror and I could see so many blue veins all over my body/face/hands. the ones on my hands looked like someone injected lead into them and they were dark, bulging . this morning all smooth and normal.
The spot in my groin that I thought was a hernia I think might be part of all this too.
also getting feeling in neck like the right sided vein is pulsing once in a while like I can feel blood going through it for a second , like a lump.
When I had my MRI the other week after they put the contrast dye in, I felt a large gulp type feeling on that same area and with some pain.
I have no idea what to do! all the specialists make you wait.
vascular surgeon isn't for another week.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am thinking poss. I just reminded my rheumatologist that she wanted me to go to EDS clinic 9 norths ago but she never called them to schedule!
She said she would now.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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