posted
I also showed up with the Fry blo bug. I treated with doxy and flagyl for 5 months and did not see much improvement.
My llmd and I decided to switch to address the blo.
Dr. F says biaxin/plaquenil.
Dr. S (in one of his newsletters) says levaquin/mino (or doxy), bactrim/zithromax, rifampin/mino (or doxy), levaquin/bactrim.
I discussed all of this with my llmd and we opted for Rifampin/Mino because I am 61 and levaquin is not recommended for longer periods with 60+ patients. Also, he had a bad experience with plaquenil and will not prescribe it.
I have been on rifampin for almost 2 months and mino for about three weeks. I am seeing slow, but noticeable improvement. I have not had any significant side effects. I plan to stick with it.
Jeff
Posts: 43 | From Sacramento, Ca | Registered: Jul 2009
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This is about Artekin... I have no idea where to get it, though. We also don't know how similar malaria is to these co-infections. So, we don't know if it would work...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by karenl: chloroquine is the generic of plaquenil.
That means it is only one malaria component.
Actually, hydroxychloroquine is the generic of Plaquenil.
Posts: 819 | From East Coast | Registered: Apr 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Can someone explain the difference between bart and the BLO? Isn't the "Fry" protozoa the BLO?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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springshowers
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posted
There are still many people and doctors are still not up to speed on the Fry Findings.
The BLO orHEMOBART are the old findings and bacteria.
This last year the Protozoan was found and is now what is considered the culprit and the Hemobart is a tag along bug.
That is the theory.
So treating that protozoan has become the priority.
What is used and supposidly best response is seen so far is biaxin / plaquenil or Mino/plaquenil. There is still research going on and maybe new protocols will come up for this.
There is a new PCR test in develpment and research and patients being used to test.
Nice to see things progressing and moving. Of course treatment options that are specific to the bug would be great and that is always being worked on ..
SO. treating the protozoan... is key I think.... Using those meds or even some of the babesia meds and rife... or anything that might be used to treat blood protozoans might help... for now we got to do the best we can with this and hope for more information in the future.
Also.. remember ..the protozoans are hiding in biofilm clusters. If you get the smear test to test for the protozoan .. how it is viewed and shown will be in a biofilm cluster. Plain as day.
So add in anything you know of to try to eat away at biofilms too as you treat..
Take care.. all
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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MariaA
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posted
and what, again, is now thought to be useful on biofilms?
-------------------- Symptom Free!!! Thank you all!!!!
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
so the BLO is closely related to another protozoa babesia? Hemobart is red blood cell invader?
Certainly makes me wonder about myself. Darkfield (5 yrs ago) showed my RBC being invaded by unknown, but I've never really had babs sx for 10 yrs. Some of my earliest sx were babs like?
Spring if you have some easy reading for me, could you attach? I will test my rife on myself with babs freq to see if I get any hits.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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posted
spring, up for questions?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I read on a few earlier threads that the Fry protozoa was closely aligned with toxoplasmosis. Is that no longer a valid hypothesis by Dr. Fry?
The treatment for toxoplasmosis is daraprim (pyrimethamine) and clindamycin or sulfasalazine, along with folinic acid.
I have not tested with Fry labs, but have tested PCR positive for toxoplasmosis and equivocal for babesia, both protozoa/parasites. I felt that the toxo treatment was definitely targeting something, and would like to think it also covered the possibility of the Fry protozoa as well.
What are the latest findings springshowers; sounds like you are familiar with the latest information? Is it still thought to be similar to toxoplasmosis? Was daraprim/clindamycin effective in treating the fry protozoa?
thanks, nancy
Posts: 964 | From san diego | Registered: Oct 2009
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karenl
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Thank you all for your help, especially springshowers for clarifying the situation with the protozoan. Karen
Posts: 1834 | From US | Registered: Oct 2008
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kelmo
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posted
My daughter has done pretty well with mino/plaquinil with ketoconizole (anti-fungal). Keto kicks butt, and can only be taken once a week.
She is considering biaxin/plaq combo. Has been on mino for two years, and just dropped a med that was contraindicated with any mycin, so eager to switch it up a little.
Just for the record. She still has some symptoms, but the brain fog/confusion four years ago has gone away with mino. She is now competing internationally for the college forensics/speech team (memorizing ten minute speeches).
So...you CAN get better. Not in remission, yet, but getting a little life. That's good for a gal who was too sick to start a life.
Posts: 2903 | From AZ | Registered: Feb 2006
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MariaA
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posted
wow. congratulations- that's a fabulous personal achievement for anyone with tick-borne illness and it's cognitive disorders!
-------------------- Symptom Free!!! Thank you all!!!!
janice victorov
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posted
I was given plaquenil and zith.
However was switched to tindamax when my doctor heard some not so exciting news about plaquenil.
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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CD57
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posted
what was the not exciting news about plaquenil?
Posts: 3528 | From US | Registered: Apr 2007
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karenl
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posted
janice,
I should take biaxin with plaquenil but my doc is also afraid.
I think the plaquenil does eye problems - I was on it for some days only, years ago, and got a stroke in the eye.
How are you doing on tidamax and zith.? Why not flagyl?
But zith. is azitromycin ? and this is very bad for kidneys. I am not allowed to take it.
Posts: 1834 | From US | Registered: Oct 2008
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springshowers
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Hello
Regarding Toxo treatment. I was on it and did really well for awhile. Really well. And then tanked and got worse. Others too .. So there is though that the Folonic acid supplementation (that you have to have with Darprim) might have been actually contradicting or making the bug worse...
So that treatment was stopped.
I got to admit I have not had such a positive reaction during that time that I was doing well but it just did not last. It was about month 4 that I went backwards quickly.. I still though think there is something to that treatment and maybe pulsing or short bursts might help. I dont know.
I do not have anymore new info to share...at this time.. I think that the treatments discussed here are all that are being used for the most part at this time.. I hope in the future we can get more targeted treatments.
I think Rife is a good option to play around with to try to find the numbers that could help.
I posted in The Rife Support thread as well as others some ideas for this if you are a rifer..
Biofilms treatments such as Bulouke or Edta or anything else that you have had success with is helpful.
For me.. To test what works on biofilm is by Taking your treatment that is to kill the bug without the "biofilm" treatment and then add it for a week and compare your herx. Or choose some timeframe that you feel comforatble that will give you a good comparison.
For me it was like night and day... .. I started without it and identified my herx. I did this for a month.. And I added the biofilm treatment I choose and compared. I herxed twice as hard.
Also it is good to take your biofilm treatment and take your ABX or Bug Killing treatment within 1 hour of it. I am taking an Oral K3 edta and got big herxes ... I started the orals after doing IV edta for months and it still increased my herx. Then after about 3 months I was no longer getting the same affect and got to what my doc said was a max dose. SO I added other things one by one like Bulouke and Wobenzyn.. I again provoked a bigger herx. I am not at the point where I can add the few items that I had to slowly ad and barely get a bigger herx.... So. Not sure what I will do next.
By the way this pertains to Rife too. >. Do your rife 1 hour after you take your biofilm treatment of choice.. .. and compare like I wrote above.. >. and monitor that difference.. Add other things or change it when the affects are not happening anymore.
It made a huge difference in my treatment. And for me there is not that many things that are so trackable and notable and obvious during treatment... ..
THis was a very big one for me..
....
I hope this helps even a little.. : )
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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quote: Regarding Toxo treatment. I was on it and did really well for awhile. Really well. And then tanked and got worse. Others too .. So there is though that the Folonic acid supplementation (that you have to have with Darprim) might have been actually contradicting or making the bug worse...
The very first day of treatmentment for toxo, I felt immediate improvement; my leg was no longer stiff, and I could feel loosening of head pressure immediately. For me, Daraprim was extremely effective.
You may be on to something regarding folinic acid. I reduced dosage to every other day, and still had elevated B levels with blood tests. Why would folinic acid aggravate the bug; is there a logical explanation?
For me, there is an overlap with babesia, toxo and maybe this fry protozoa. Or maybe, they're one in the same? Tindamax has been beneficial, and now Mepron, but nothing was as significant as daraprim. I can't help but feel that toxo treatment helped babesia, and vice-versa.
I agree with you on systemic enzymes. I take bromelain and lumbrokinase, and they have made a huge difference. You can take bromelain with antibiotics, and it increases the effectiveness and penetration.
thanks for your feedback. nancy
Posts: 964 | From san diego | Registered: Oct 2009
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springshowers
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posted
Hi Nancy.
Thats interesting that you had that sort of reaction to Toxo Treatment too.
I have not been able to get it out of my mind and feel that it is a treatment that was not given a chance and has not been researched or tried out enough.
I wonder still about it.. and why it worked so well.. for awhile.
So... how long were you on it??..
I agree there is overlap too between those protozoan infections and treatment. Overall I respond and have responded to protozoan treatments best... of all...
Interesting..stuff
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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If I have learned anything through this process, it is to trust my gut instincts. The fact that we both have been helped by toxo treatment is significant. I couldn't get anyone to treat toxo because they only treat those with compromised immune systems (another issue with lyme; we are viewed as not immunocompromised).
Why were you treated for four months? I was treated for six weeks, as I thought 6-8 weeks is the recommended guideline. It's all such a gentle balance to know what is enough, and when to switch-up treatment.
I am not really sure WHAT protozoa was being treated. I had a PCR test from VipDX that was positive for toxo. Then had an IgG/IgM from Quest that was negative. VipDX, reran the PCR test, and it was again positive for whole blood and serum. It's no different then lyme testing; no tests are ever accurate!
Posts: 964 | From san diego | Registered: Oct 2009
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