2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I'm in need of a crash course.
I get Lyme. It goes into cystic form, and must be retreated each month until all the ketes in all the forms are removed (or low enough,depending on who you talk to) or three months symptom free.
But what about the parasite. I read that Malaria is treated in children within 3-7 days using Malarone (and with a children's dose).
When I think Malaria....I think wow.
Why is Babs worse and take longer?
When should one expect to see improvement on meds?
I don't understand this beast. Maybe someone can give a few one liners, so as to avoid a bunch of research.
Thanks Much,
2roads
ps-Alv, your box is full again, and I wrote to check on you and send well-wishes.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
It's hard to get rid of because we have lyme weakening our immune system. So the strategy ends up being, beat down the babesia as much as you can while you get rid of the lyme and whatever else is kicking our butt.
In a perfectly healthy person babesia wouldn't be such a big problem.
Posts: 499 | From Indiana | Registered: Oct 2007
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I don't know....
Is that the only reason?
Look at some of us who seem to only have coinfections.
It is still a long process whether it be Babs or Bart.
Isn't there anything related to the organism that gives it longevity other then our immune systems from Lyme?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm just not sure I buy into the longevity thing with co-infections as my LLMD is said to be world-class and treats it for 10-day cycles twice. Babs isn't treated for months and months and months with mega-doses. Bart isn't either.
My personal theory is these LLMDs may be treating unknown things and guessing wrong on Babs/Bart and people see some benefit. They don't test and testing is 'supposedly' unreliable so no one can prove it wrong.
Why would people so highly recommend this LLMD and others who follow the protocol(s) IF none ever improved w/o killer protocols? Something isn't adding up iMO. Maybe LN is just an anamoly and 99.99% of people with these co-infections aren't bothered by them or they go away in 10-30 days?
Seriously, what could I be missing? If these co-infections were so brutal, how could modern medicine not even know what they are? I have yet in over 25 docs I've been to, had one care or know what Babesia / Bartonella is. They looked at me like I was a complete moron.
I think docs like Dr. F need to do 10,000 free blood smears to random populations and see what shows up. That would be one interesting story!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I can say something about that.
My daughter was treated for lyme for over a year.
Bartonella sustained itself, because her tummy pain was not improving. Bipsies showed it in the gut.....even after all those meds.
.....was she on antibiotics that were not right for her Bart only lyme (as she was also CDC pos)....maybe. Could be why. But, it still took 4-6 months to erradicate the pain and move on in life.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lymeberry
Unregistered
posted
I think anyone with babs should talk to their LLMD about also adding in some Tonic water. One person told me they recently herxed from drinking some. You can find tonic water now with agave instead of sugar.
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seekhelp
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Member # 15067
posted
Lymeberry, why bother asking your LLMDs permission for tonic water...it's OTC and $0.60 a bottle at Wal-Mart. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
hey lymeberry an even better idea is buying quinine powder from either rain-tree.com or ktbotanicals. I used that stuff and it kicked the babesia (duncani) outta me. I did use it with clindamycin though.
I looked for decent tonic water, but it all either has a ton of sugar which we don't need or the poisonous artificial sweeteners which our liver doesn't need.
Posts: 499 | From Indiana | Registered: Oct 2007
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lymeberry
Unregistered
posted
Q Tonic uses agave which is still sugar but a better form. You can google them and go to their website and they will direct you to a supplier near you if you send them an email.
Quinine powder sounds good too. Sometimes I get tired of having to order so many different supplements online when I could drive to the store and just pick up some Q Tonic while running errands. I get lazy and unmotivated.
I have zero financial connection to Q Tonic.
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
up
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yeah,
Maybe someone here wants to ante up the funding? Where is this money for testing supposed to come from since the medical profession has never heard of these diseases? And there is virtually zero funding for TBI research as it is.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
While we are on the subject of babesia, has anyone read any material on how fast they reproduce in the body? I have looked online for some information on that but haven't found any.
Posts: 63 | From eastern Washinton state | Registered: Jan 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My bloodwork routinely shows high levels of babesia ducani.
biaxin was very effective in stopping symptoms but did not lower the infection. Mepron also seems to be holding the symptoms at bay.
The only thing so far that did lower the infection level was MTE-9. An herbal IV. After 4 weekly doses, I got mine one and only negative babesia test. I didn't keep up the shots and the babs quickly returned.
I can only hope the Mepron/zithromax combo I am currently on will clear babs completely. When I read the LLMD doctors, it has a 98% success ratio but when I read experiences here, 0 success.
Are we skewed on this board?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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losferwrds
Unregistered
posted
Mostly co-infections are oppurtunistic, the key is getting to the immune system to react properly to everything, but that is the million dollar question to lyme and just about every other autoimmune related illness.
The other problem is decent testing. With out decent PCR methods you have no way of knowing what you kill or have or had as the elisa anitbodies can be present post infection/exposure,
Simply said the treatment for this is in the dark ages, thats why people are resorting to alternative treatments like rife and salt/c cause to be honest modern medicine is clueless about treating this, the best they can offer is remissions IMO.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
These statements of 98% success can't be proven just as the IDSA can't prove Lyme isn't chronic. It's all words. We all need to take things with a grain of salt (or 20 gr of salt/C).
I'd take remission in a heart beat if it's achievable. The issue is seems like LLMDs put 2% into remission and 98% remain symptomatic if I use LN stats.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hi, thought I would chime in my 2 cents on the original question. My response is not "official" and it is only what I have gleaned from reading articles, comments, medical websites over the past year. Classify what follows here as "hearsay evidence".
I've had many of the same questions. Unfortunately, there is not nearly enough scientific research into human babesiosis. Most of the treatments are derived from malaria research, which is a similar, but not the same, type of infection. The doctors then apply the info to babesia. There are a few clinical studies, but treatment knowledge is filled in by trial and error. As far as I can tell, no therapies have been developed specifically for babs.
As several others pointed out, there seems to be a lot of differences in treatment success depending on the species of babesia present and whether or not there are coinfections. The symbiosis is not well understood. Some doctors fight them all at once; others fight them in a sequence; all seem to vary treatment based on symptoms.
Despite looking, I too have not found much info on the longevity of babesia in the human body. We know that it moves into the red blood cell and is able to hide from the body's defenses. The life cycle of a red blood cell is 4 months and I think that is where the minimum time comes from in treatment protocols.
Because of the frequency of relapse once treatment stops, people are looking for where this bug may be hiding. (Malaria is known to hide out in the liver and can also hang out in the blood for years. The 7 to 10 days of malarone doesn't always cure malaria. Sometime multiple treatment cycles are needed; not to mention the possibility of a resistant strain.)
Babesia species also affect domestic animals and the vet researchers are trying to answer these same questions for how to treat cattle, dogs. etc. One recent paper stated that the bug is able to change the cell wall of a red blood cell so that the cells stick together. The infected rbc's then form a plaque on the inside of a blood vessel. Nice, cozy place to hide out!
My teen has been fighting babs, bartonella, "probable" lyme, for almost 9 months. The LLMD is now evaluating whether there are other missed coinfections or some underlying immune disorder. Health is 80% restored, but the terms are still shakey.
Best Wishes,
Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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1Bitten2XShy
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posted
Seek...interesting what you say. My LLMD is well known as well and he treats Babs for (2) 3 week periods. I have not had what I consider any Babs symptoms return.
He also does only a 6 week intensive Bart round as well.
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Alv
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posted
Intensive treatment addresing this coinfections have been the only way to go -That is what I have found in my eksperince .And retreatment might be necessary when you see is comming back until you shut them up .
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seekhelp
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Member # 15067
posted
So the bottom line is someone is right and someone is wrong. Only time will tell, but if LN is representative of normal populations, some LLMDs appear to underestimate the severity of these critters severely.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I know there are so many variables.
I try to simplify to ask a question, but I realise it just can't be done.
It is horrific that we do not have more information on this infection.
I prey the next generation spits out a load of microbiologists, and perhaps some vested interest financial support, to get to the bottom of some of theres things.
Yes, the Malaria treatment of 3-7 days doesn't really mean it's cured...I read this today. We know that spin all too well....good old duration.
I don't understand treating for two short cycles or a few weeks.
Either I am using the wrong drugs, which is a possibility because I am limited by age, or immunity, coinfections, variious strains.....yada..they all play a role.
I wish I was the specimen...it wouldn't matter as much to me.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lymewreck36
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Member # 4395
posted
O.K. I couldn't help myself and had to jump in. I am every person's babesia horror story. I had been treated for 7 years for lyme/babs. I tested positive for both, and in 7 years, have NEVER had a negative FISH for babs.
IF I drop the babs treatment, the hallmark symptoms of babs run me over like a big mac truck.....migrains, night sweats....joint pain, and neurological stuff. Yes, babs can cause irregular heart beats and neuro stuff.
BAbs makes red blood cells sticky, so they clump together and cause thick blood and related problems. That is probably what causes the thumpity thump in the heart.
I have been on cleocin I.M./quinine.....zithro/mepron for years.....malerone/biaxin...artemisinin....you name it.
Now I have drug-induced-lupus and cannot take any medication without a full blown lupus attack. I'm looking into rife machines.
One doctor told me babs herxes are not as bad as lyme herxes. I told him they had to carry me off an airplane and put me in sick bay in the Zurich airport because I started a new babs treatment and had a huge herx from hell.
What I have is very aggressive. I don't know if I'll survive off all medication. Maybe this is my last year. I see my oldest daughter graduate from high school tomorrow. Hopefully, I will see the other two daughters graduate from high school.
By the way, all three daughters have chronic lyme disease, and two of them have babs.
Husband has chronic lyme.
I'm the only one disabled.
So, folks, it can take quite a while....and run away from any doctor that says you should be treated for 10 days.
Mary in Switzerland
Posts: 1034 | From North Carolina | Registered: Aug 2003
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I always enjoy reading your posts. You always read my mind and never hesitate to not question things or speak your mind. I appreciate that a lot. Without other opinions here, this would be like a cult.
I think we should all embrace questions and differences of opinion. Just wanted to add that. Thx!
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Oh Lymewreck,
What a nightmare.
I'm sorry for your suffering.
You will see them graduate from High School.
But, you make many interesting points.
I am especially curious as to why your children have Babs, but only you are disabled. Why do you think that is?
Is it because you think in time they too will struggle, or a different babs strain got you, or maybe they have their Dad's genetic response to Babs, or you are geneticaly lacking?
To me, research needs to be done to separate out your outcome from theirs. Perhaps you are a dramatic case whose answers can help you and us all.
What are your worst symptoms?
Thanks so much for everyones opinions and shared experiences.
Hugs
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Lymewreck, I too am so sorry about what you've been through. I know babesia can be stubborn (hence the title of this thread) but I can only imagine your frustration.
What is drug-induced lupus? Was it caused by one of your babs meds?
I hope you have success with rife!
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That would be one interesting story!
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