beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I started Tindamax-and had increaseed leg pain/weakness and nausea. My nightsweats are pretty much gone. I never had headaches, or daysweats but I do have nausea which came back with the Tini.
I have been on babs tx for 8 months-first 2 months ramped up to a heavy duty protocol.
At this point I'm wondering if I'm just sick from the abx-I'm on mepron/malarone, biaxin, amoxy and Tini
Any advice?
Posts: 1276 | From maryland | Registered: Jan 2009
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RZR
Frequent Contributor (1K+ posts)
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posted
Hi Beth,
I am also having a difficult time knowing when babs is gone. I never had headaches either. I did have night sweats that increased with Malarone or Mepron.
I still have air hunger at times and a chronic cough. I also have mycoplasma pneumonia, which could cause these symptoms.
Sorry I don't have an answer for you. It's all so confusing.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My doc uses the ECP test to measure babesia. Mine is way down to 12 with below 10 being normal. My youngest is at 19 and my oldest 24. Both boys were in the 90's this summer before starting malarone for one and coartem for the other.
I think plaquenil kept my babesia down all those years I was on it for supposed lupus. I have only taken artemesia 10 days a month.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
What is the ECP test?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yes, I have never heard of that test. What is it, how do you read it and where do you get it done? Thanks.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I took Tindamax for 5 months and NEVER felt remotely good the whole time on it. I think there are some drugs that make you feel bad.
When the lead suit comes off, the babesia and Lyme are gone.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Up
I also would love to know what the ECP test is.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I had/have Duncani and never had nightsweats. When my stamina improved greatly I assumed I was done treating. Bartonella had taken over at that point so Im not sure if its gone or just overshadowed.
I too have nausea when taking a cyst buster. This recently came back and I wonder if nausea and flu like symptoms are lyme.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Six, I know that lead suit. That is a good way of putting it. I get the lead suit one day a week. R
Posts: 845 | From Northeast | Registered: May 2011
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jackie51
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Member # 14233
posted
Since I had never heard of that, I looked through all my lab results. I had this done some time ago.
It is the Eos Cationic Protein test (lab work). I'm pleased to report that mine is 5. Maybe I'm actually done with treating Babs, if what your doctor says is true with results being between 0 and 10 (this is the reference interval on my lab results too).
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
RC1, babs has a 7-day cycle and a 14-day cycle per my lyme doc. I experienced both.
If you get a lead suit one day a week, that is the babs 7-day flare. I suggest you take artemesinin the day before the flare, the day of the flare, and the day after the flare.
That is how my doc got rid of babs for me. He said to encompass the flare with the artemesinin.
After so long, I no longer had anymore 7-day flares, not even a hint of one. Then, the babs switched to a flare every 14 days. These flares were very subtle, such as an overwhelming need to go to sleep, no matter what I was doing. A half-hour nap did the trick. But, that is an example of how subtle the flare can be.
When I no longer had any symptoms at all on the flare days, that's how I knew I was finished treating babs.
Babs was the last illness I treated, so that made it easy to know when I was done treating. I felt completely normal 24/7.
I never had any sweats or any of the other typical babs symptoms. BUT, as soon as I started treating babs, I got the clock-work 7-day flare, and it was a doozy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, thanks so much for sharing that with me. It makes this a lot clearer to me. I hadn't heard of any one having these cycles like I have.
This is my last infection too (I hope) I had already treated it for 5 months, but it relapsed.
I am taking Malarone and Omnicef, not sure if that is the best combo, but it's the one I'm on. I just started it a couple of days ago, I did a round of Coartem prior.
I was doing Dr. K's Babesia protocol 500 mg Artemesinin with grapefruit juice 3x a day two days a week, when I first felt like I might be relapsing.
I thought it worked, and I was done, so I stopped, and it came back. I was treating Lyme and then later Bart at the time. I should have stuck with it.
I think the three days of Art. might be the ticket. Thanks so much for posting this.
Posts: 845 | From Northeast | Registered: May 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I do Mepron and Ceftin, very similar protocol to yours. My doc had me on art a while ago, but hasn't mentioned it in a while.
Glad to see it's your last infection. I've still got Bart to contend with.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thanks for posting your protocol Jackie, yes, they are similar. Good luck with the Bart treatment, you will feel a lot better when it's gone. R
Posts: 845 | From Northeast | Registered: May 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
eosinophilic cationic protein test
ECP is a protein released when eosinophils degranulate (explode). This happens during allergic reactions or during some immune responses to parasites. Since Babesia is a parasite, it is reasonable to assume the body sends eosinophils to attack the Babesia. And I know there is at least one case report about a person with Hyper-Eosinophilic Syndrome who was also diagnosed with Babesiosis. So it is possible that ECP levels can be used to give a rough indication of disease activity (more accurately, immune activity against the parasite).
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by ktkdommer: eosinophilic cationic protein test
ECP is a protein released when eosinophils degranulate (explode). This happens during allergic reactions or during some immune responses to parasites. Since Babesia is a parasite, it is reasonable to assume the body sends eosinophils to attack the Babesia. And I know there is at least one case report about a person with Hyper-Eosinophilic Syndrome who was also diagnosed with Babesiosis. So it is possible that ECP levels can be used to give a rough indication of disease activity (more accurately, immune activity against the parasite).
If you have other parasites (worms), would that affect test results also?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
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posted
up
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
I have been treating babs microti since Sept 2010 with mepron, malarone, criptolepsis, plaquenil and artemesia (not all at the same time but in combinations) and while my load has gone down and I am not as fatiqued as I once was, every time I go off meds the sweats and chills come back.
I definitely think its babs and my LLMD does too. I see a well known LLMD in New York and he has tried everything, but for some reason I can't seem to get rid of it.
Catgirl
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Member # 31149
posted
Wow. I am on bart meds (doxy/bactrim) and having herxes every other week. I guess it's babs coming back harder? I knew it was coming back, but these herxes are crazy. Or can lyme give 7 day herxes too?
-------------------- --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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RZR
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posted
Even though babs isn't gone, do some LLMDs go on and treat bart and then come back to babs at some point?
I was on Bactrim DS for bart for 1 year, and A-Bart for the past 4 months, along with babs treatment.
I still need to treat with Rifampin because bart is definitely a huge part of my illness.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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nefferdun
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Member # 20157
posted
I wonder too.
Catgirl, borellia has 28 day flares, not seven.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My LLMD told me bart can cycle 10-14 days
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
you know brucella can cause some of the same symptoms as babs, so if you treat and treat for babs and never get better, maybe you should test for brucella.
Posts: 908 | From Albany | Registered: Nov 2008
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As a pathology nurse supervisor its very important to me, to not be mistaken with details.
The problem with using the ECP is that while in only a few Babesia cases will the eos be high, affecting the ECP result; the eos may also be high due to other reasons as well. OR the eos can be normal and still have Babesia. The ECP doesnt "prove" Babesia at all. it simply "proves" high eos and therefore high amounts of broken eos, from any cause.
whats important to know is that the "Dr" associated with that "case study" has many peers questioning him, and his "results", AND that ECP cannot monitor, evaluate, nor prove existence of Babesia infections.
So far the best tests for Babesia diagnosis are PCR's and FISH ( which are special smears that look at and in the RBC where Babesia take up residence.)Plus the clinicals of exam, history and symptoms.
Once Babesia is in fact diagnosed or strongly suspected, ECP may be important in managing symptoms,only IF the eos become elevated; since the higher than normal eos can cause additional or worsening of existing symptoms. BUT only if and when the patient has abnormally high eos on CBC.
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