posted
Not sure how much confidence to put in the malarone versus Mepron idea. Do know that Mepron is more often prescribed.
My question -- has anyone with a positive Fry bloodslide or a positive Clongen bloodslide for the mystery bug taken malarone?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
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posted
I had a positive Fry slide very recently (January 2009). It showed a "few" of the mystery bug (I think 3 or 4 on the whole slide).
I had just gotten off 5 months of Mepron in November of 2008. I had pulsed artemisinin even days before getting the Fry smear done. (the artemisinin also overlapped some with the Mepron treatment).
The most artemisinin I would do in a day was 600mg. (indicating that if it's useful against the mystery bug, maybe higher doses are necessary, or maybe I just wasn't on it long enough)
But I have also taken Malarone. I only took 1 pill per day though (but I scarely weighed 100 lbs at the time). This was in spring-summer of 2007, and I took it with Zithromax and Cipro.
So to answer your question....i have taken Malarone (though at a low dose) and I did end up testing positive for Fry's mystery bug.
Posts: 4590 | From Midwest | Registered: Jun 2008
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cantgiveupyet
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posted
I was like Hoosier....also took malarone one pill a day due to weight issues, However I only was on it for about 4 months. I also tested positive for the Fry Labs mystery bug.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Hoosiers51
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Yes, 4 months is the length of time I took Malarone too. I should have added that.
Has anyone here taken Bactrim for a decent period of time and tested positive for either mystery bug? Clindamycin? Plaquenil with either Doxycycline or Minocycline?
Those are a few things off the top of my head that I have thought might be effective, based on things I have read about what kills blood protozoa, and LymeMD's blog.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hubby took Bactrim for 8 months I think before testing positive for the Clongen mystery bug.
Beginning to sound like there are either multiple bugs which respond to different meds or maybe LymeMD's patient was just killing babesia and not the mystery bug?
I honestly think hubby's babesia is gone -- not found when he tested positive for the Clongen mystery bug.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have a positive Clongen blood slide for the mystery bug/parasite from January 2, 2009. I took Bactrim, along with other things ( ), for about 7 months prior to this slide.
I have been on malarone since mid-January (along with amox,plaquenil,biaxin, and ART).
Do we have any idea if the Clongen and Fry bugs are the same?
Posts: 520 | From Maryland | Registered: Jan 2007
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I personaly think both labs are seing a parasite and not a bacteria. However, I think there could easily be more than one undiscovered parasite.
Looks like you are on meds that supposedly should be working. Any change in symptoms or herx since adding the malarone? How about the biaxin and plaquenil? How long on those and do you think they are helping either?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I am curious -- does your hubby test negative on Clongen's bartonella species panel? You mentioned that you think his babesia is gone. Do you think Clongen's species panels are a thorough enough test that we can count a negative as really negative?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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hiker53
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posted
I think Dr. F is speaking at a conference in Kansas City today and is supposed to talk about the mystery bug and may even have its genetic sequence now--but don't quote me on that.
You asked :Any change in symptoms or herx since adding the malarone? How about the biaxin and plaquenil? How long on those and do you think they are helping either?
I started malarone, biaxin, and amoxy on January 4. I had a spectacular two weeks, then started the ART. Almost immediately, three horrible weeks with increase in neuro stuff. Then 12 great days.
Started Plaq on March 4 and eight days later, anxiety, burning heavy arms and legs, stuttering at night.It has been rough since then. I am supposed to add something which escapes me as I dropped it at the pharmacy and forgot to write down what it was! I'll find out Monday, I guess.
Interestingly, my twitching has decreased very very significantly.
I have done two courses of Mepron and never had a response like this, either the positives or the herx.
We should all keep one another posted.Any news on the conference? Kris
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METALLlC BLUE
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I also think we're looking at a very persistent pathogen. It probably is a parasite. I've been on IV Vanco, Oral Pen, Oral Bactrim, Oral and IV Levaquin, Tetracycline, Biaxen/Plaquenil, Azithromycin/Amantadine, and it still showed up on Dr. Fry's slide.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
LymeCFIDS -- Hubby did not do the species panel PCR tests from Clongen. If we understood Dr K correctly the bloodslide should have found either babesia or bartonella if they were there.
We were saving the $ to have the 16S DNA sequencing done on the pathogen that was found. Since the lab was not able to sequence anything we will now use those $ to have a new Fry test done if it is available after the conference. Could not get an answer from Fry lab last week as to what if any new tests would be available -- still very hush hush.
As to PCR testing -- lots of false negatives regardless of what pathogen -- Clongen could not give me any stats on that. Have read somewhere that Lyme only shows a positive PCR something like 6% of the time -- meaning a false negative rate of 94%. Amazingly hubby did have a positive Lyme PCR years ago even though he never shows antibodies.
While the species PCR tests are the only way to currently test for many of the different strains of Babesia or Bartonella they do give false negatives. In my opinion there is no such thing as a false negative PCR test. It is just so expensive to repeat the test multiple times to increase the odds of getting that positive result.
Joysie -- Sounds like progress. I am assuming you have been told to pulse the artemesinin?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
What was the name of the conference that Dr. Fry supposedly spoke at? Do they have abstracts/papers posted to a website?
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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cantgiveupyet
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posted
asus-
this is the info Kelmo posted on another thread. I think we are all waiting for news from the conference.
Dr. Ryser to Hold Spring 2009 Conference in KC Lyme and Chronic Illness: New Tools to Promote Accurate Diagnosis and Treatment
Date: March 27 & 28, 2009
Synoposis: Lyme disease is one the most mis-understood diseases of modern medicine. Lyme disease is not a ``stand alone disease''. Lyme disease is a multi-systemic disease that affects all systems of the body. It is best understood as a tick-borne syndrome, a myriad of diseases including Borreliosis, Babesia, Bartonella, Rocky Mountain Fever, and many other diseases. In order to properly diagnose and treat Lyme Borreliosis disease, the physician must consider chronic illness as a whole and how the Borreliosis spirochete interacts with, influences and acerbates other chronic medical conditions. Successful treatment of Lyme disease must encompass all body systems affected. In this workshop, participants will gain a better understanding of the diagnosis and treatment of tick-borne diseases in conjunction with chronic illness as a whole.
Speakers:Carol Ann Ryser MD, Chronic Illness specialist, speaking on Chronic Illness and the Diagnosis/Treatment of Tick-Borne diseases; Steven Fry MD, of Fry Lab and developer of specialized testing for tick borne diseases speaking on co-factors affecting tick-born diseases and new lab developments; Reginald Dussing MD of Kansas University Medical Center specializing in SPECT Scan testing speaking on how the SPECT Scan can help provide a diagnostic tool; David Berg MA of HEMEX Lab and researcher on Hypercoagulation defect speaking on the mechanism of coagulation/ inflammation and chronic illness; Joseph Brewer MD, Kansas City Infectious Disease physician, researcher in transfer factors for infectious diseases, speaking on infectious disease treatment options.
Times: 8:00 am - 5:00 pm each day
Place: Marriott Hotel, 45th and Main in Kansas City, Missouri, just north of the Plaza (816-531-3000)
Cost:$300 prior to March 15 and $350 at the door
Conference Reservations: Contact Michael at Health Centers of America KC LLC (Phone: 816-763-9165); (Fax: 816-763-9208) or (email: [email protected]).
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Hmm OK. I hope they release some info soon.. :-)
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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bettyg
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posted
someone commented that notes were taken and will be typed up ASAP and posted on nat cap's site!
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METALLlC BLUE
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quote: I also think we're looking at a very persistent pathogen. It probably is a parasite. I've been on IV Vanco, Oral Pen, Oral Bactrim, Oral and IV Levaquin, Tetracycline, Biaxen/Plaquenil, Azithromycin/Amantadine, and it still showed up on Dr. Fry's slide.
Another patient in another thread who sees Dr. F said that Dr. F believes -- after going through the DNA -- that they're dealing with a protazoa.
This would explain why none of my treatments worked, but if those didn't, then I'm now on high dose (4tsp) Mepron, (6 caps Dr. Z Artemesiae) an 500mg Azithromycin. I probably won't see a response to this either since a lot of other patients still tested positive for the same thing even after a lot of treatment?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Do we have any idea if the Clongen and Fry bugs are the same?
Seems to me that the descriptions that Fry and Clongen provide are quite different - the Fry pictures seem to show small cocci adjecent to or inside erythrocytes, the Clongen results seem to indicate rod shaped or pleomorphic highly motile organisms.
Bea, did Clongen offer the possibility of a 18S sequence for the bug assuming it is protozoal?
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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cantgiveupyet
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Betty- There were two conferences on the same day. One was in DC and the Dr F one was in MO. Did they say it was the Dr F conference they would be posting about.
quote:Originally posted by bettyg: someone commented that notes were taken and will be typed up ASAP and posted on nat cap's site!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I have been on all the meds people have asked about and long, and still have a mystery bug apparently adhering to the surface of RBCs.
Wondering if there are multiple mystery bugs. And what the heck does it take to get rid of them, considering how many of us still have them.
Posts: 8430 | From Not available | Registered: Oct 2000
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CD57
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Metallic -- I think I'm in the same boat as you. Have done lots of anti-bacterial (Levaquin, mino, doxy, rifampin, Bicillin, now IV Rocephin) but nothing for parasites.
I suspect that when we do anti-protozoal tx we'll see improvement.
Posts: 3528 | From US | Registered: Apr 2007
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bettyg
Unregistered
posted
can't give up,
it will be the DC conf. about lyme bill hr 1179 ....
sorry ... 2 conferences same day ... uffda! no wander we get confused! uffda
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