Topic: Quinine experiences for Babs ? New IDSA may give me Complete Blood Exchange Transfusi
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I found more crap moving around in my blood. I took it to this new infectious disease doctor. He was quite impressed. Actually gave me credit for my Igenix testing for PCR Babesia.
He wants me to try oral quinine and clindamycin. He says if I have trouble taking the medications which has been my experience in all of this, then he would admit me to the hospital and do the complete blood exchange transfusion while also giving me these drugs.
So, I have not been able to tolerate Mepron at full dose. I am wondering what the quinine will do to me.
posted
Blood exchange?? YIKES! never heard of doing that for babesia or lyme or ....
I took many many rounds of clindy/Q .. off and on for two years. Be sure not to take too much Q or your ears will ring .. and it can become permanent.
I didn't win my battle until I took ART and zith.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Even the idea of a complete blood exchange transfusion brings with it a lot of study.
I would never, ever do this as we all know they don't screen the blood supply for lyme or most other tick-borne or chronic stealth infections.
The risk for contracting an infection is just too high, especially for patients whose bodies already can't fight off stealth pathogens.
Is there some new method of being able to guarantee that the blood is free of infection & parasites? There are just too many to even test and adequate testing really has not yet even been developed for most.
Therefore, to assume that whatever Rx treatment you would be getting would address whatever else might have been introduced with the multiple donor infusions, well . . . it just gets risky.
Do they shine UV light on it (not sure if that would even work but I would want some major assurances)?
Infection permeates body tissue and bone. You can't be squeezed like a sponge to get everything out.
Not withstanding the infection possibilities, what kind of stress is that to a body to have total fluid replacement? I would think it would be a huge shock. -
[ 02-13-2012, 06:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pinelady
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posted
Saudi is building the worlds largest dialysis facility in the world...500 at a time....
They know the need and suspect many are working on new technology to filter and like Keebler suggested Light Therapy...Even heat therapy.
But I too would want to see the studies..
Artemesia is proving to be one of the best drugs for Babs and Malaria.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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merrygirl
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Complete blood exchange isnt easy and risk free. You mention it like youre going for a haircut!
You would be at risk for DIC if i am not mistaken.
Among all kinds of other badness.
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randibear
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posted
uh i don't think so. just because you get new blood doesn't mean that lyme is not in the muscles, bones and organs.
even going near a hospital or medical facility is risky.
i'd be extremely careful.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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merrygirl
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Babesia can ho in bone marrow. What would you do for that?
At some point you have to say enough
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Summer3
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posted
From the research I've done, this seems to be an "old school" way of treating babesia which has a lot of risks. Why did you decide to go with an ID doctor? Had you already seen a LLMD?
I was told about the quinine, clindamycin combo as well. However, this was from an MD who admitted that he knew very little about Lyme and virtually nothing about co-infections.
The blood exchange is not something I would ever consider doing unless it was for an illness that had no other options.
lymetwister
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posted
I will have to wait and see what happens. Right now I cannot tolerate any of the medications anyway. This seems like a viable option being an RN.
If it does happen I guess I will be the guinea pig once again. the idea is to bring down the bacterial load. Once you bring down the bacterial load, the infection is less, therefore it becomes easier to treat, thus less of a die off reaction
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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posted
Forgot to mention that I would also get Antibodies that I don't currently have.
Sure there is risk for things like picking up infections, DIC, etc., but IMHO, the benefits outweigh the risks and I don't have much of a life right now as it is and alot of suffering, so I would jump on this in a NY second.
I'm surprised that none of you would support this, but to each his own.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sammy
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posted
Complete blood exchange transfusion is a well documented treatment for babesia that is resistant to other treatments.
Yes it is "extreme".
But isn't suffering from a terrible infection worse?
I want to get well. Lymetwister, I want you to be well too. Do whatever it takes...
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manybites
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If you are fighting for your life do not hesitate like me.I was after the car accident almost dying from babesia.
I delayed the blood transfusion and stayed on their antibiotics as I was afraid that I will get infections from the blood transfusion.The delay almost cost me my life.
I am alive because of the 2 bags of blood.If you are really very severe than go for it.but please start the treatment right away.After 1 year and 1/2 in treatment now I was able to each the double dosages of mepron.Clyndomycin made me have clostridium difficile in the first 3 days I could not take it.
Posts: 1379 | From disable | Registered: Aug 2011
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Tincup
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posted
Sammy is right. The transfusions are the way to treat babesia when it is severe and medications are not working. The other option is death, which isn't my first choice.
The purpose is to remove infected cells and replace with healthy ones to prevent organ damage or toxin die-off that is destructive.
Is there a risk for getting an infection? Yes. But you already have one or two or three, so what the hay.
Will it cure the babesia? Possibly not, but the point is to remove the number of parasites and reduce the parasitic load so the patient gets better and the left over parasites can then be addressed.
Theory- it is easier to deal with and clean up a house that has been flooded with 2 inches of rain water than it is to clean up a house buried under 6 feet of water.
As a side note- twister... have you ever been checked for the MTHFR mutation? This may explain why the meds you are taking are so hard to do, like with me and many others- a subset of patients with Lyme, et al.
IF this is the case for you, you may see substantial relief by treating it. Here is the info.
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Tincup, I do have 1 of the 2 MTHFR Mutations as well as the "dreaded" HLA DR genetic mutation for detoxing. Will def. check out your link. Thx
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I support it 100% lymetwister, sometimes you gotta do what you have to do.
Your video says a lot your crawling with disease.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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A friend of mine's mother had babesia real bad too and was near death when she had to be hospitalized and had a blood transfusion - that was 15 years ago and guess what - she is alive and well.
The blood transfusion plus the meds worked for her and she's in her 80's now, but she is healthier than I am! If you think this is right for you - I say go for it! I would do it if my LLMD suggested it!
seekhelp
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Member # 15067
posted
Oh I don't think may are in a worse place than us who have contributed to the blood supply so really what's it matter? If the donators had/suffered with TBIs, they'd probably trade places in a heartbeat. You don't see many people on a lung transplant list refusing them right?
quote:Originally posted by Lymetoo: I can't imagine taking on the blood of other people .. who knows what diseases they are carrying? You know they don't screen for everything.
but I support your efforts to try to get well
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Amanda
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Is the idea that you would do the transfusion first, thereby reduces the protozoa load, then treat what is left with with the clinda/quinine?
I ask because larium (a quinine related drug) is much more effective than mepron for me. So when I first started teh larium, I had a major die off reaction from it. It was much worse than anything from the mepron.
So if your concern is the die off, keep in mind you might be one of those for who the quinine causes more die off than the mepron.
Personally, the Babesea makes me feel so awful, I would rather die than have it go untreated, and if I though for a second a transfusion would help me get rid of it once and for all, I would do it.
When you say you don't have antibodies, can you be more specific? I ask becasue I have extremely low Igm antibodies, and have often wondered if Babesea wasn't the cause
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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lymetwister
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posted
I'm saying that I would get Antibodies from the Transfused blood that perhaps I don't have.
I do have Babs Duncani Igg Antibodies and they were elevated, but my immune system wasn't working, or so it seems.
However, since that Paleo diet, which I'm still on, I had that huge Candida die off and have had daily low grade fevers now x about 4 weeks, where my voice gets hoarse at about 2pm and I go from 99.2-100.0, again this is daily like clockwork. My throat doesn't hurt when the voice changes.
Alot going on and unlike before, where I would jump out of bed, out of breath, no I can hardly wake up, no longer out of breath, don't have to run for the Klonopin anymore. Very strange, but I have no energy all day long. Can still get in the car and do what I need to do, just very sluggish.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Hey , Can you please pm me or email me the name of your dr ? Thank you, sending healing thoughts .
-------------------- gatorade girl
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If the donators had/suffered with TBIs, they'd probably trade places in a heartbeat. You don't see many people on a lung transplant list refusing them right?
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