posted
I got a positive duncani result through quest diagnostics. I am in treatment 1.5 years and I am a high functioning patient- I work full time, hike, travel, etc. I was not always this way, though. Yet, when I hit 3 months of being symptom free and I try to get off meds, the bone crushing fatigue sets in. I knew something was up and had read that duncani is a tough one to get rid of. I then decided to test for it and it was positive.
I am on tindamax, bicillin, levaquin, biaxin, mepron, and bactrim.
I am also on Byron White A-P, A-L, Crypto, Enula, Art, Cumanda, Houttynia.
I am curious about clindamycin, primaquine, and chloroquine.
I am also curious about others who have treated duncani.
HELP!
Posts: 77 | From Denver | Registered: Feb 2012
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gmb
Unregistered
posted
pp82
Looks like you got a lot covered. There's a dozen or so of us who post frequently and are battling some kind of tough Babs or Proto.
What dose of Mepron do you take? Most feel the higher dose is the way to go. If that don't work take a break and try Coartem, but you may have to back off most of your other meds during that time.
posted
You could try switching the tindamax to flagyl -- in my opinion flagyl is much more potent.
Also another possibility would be to add in or switch the mepron to malarone.
How long have you been on your current meds? That is definitely quite a list.
In my opinion the Bactrim is not a top drug either.
The easiest thing to do and the cheapest would be to add ivermectin. The horse paste from tractor supply will work and does not require a prescription.
EECG from green tea could be helpful but it requires very high dose and needs to be very concentrated form.
You don't say which form of art you are on -- the artemesinin or the artesunate forms are much better than the whole herb artemesia. Hepalin.com offers an artemisinin gel which is good or the artemix product combines several forms of art.
Cryptolepis is good but may require high dose. Buhner has new protocols that might be even better.
See the notes I posted on his conference in June.
I would be surprised if you can get a doc to prescribe primaquine and chloroquine. I do feel that could help but would hold off on those until at least 4 or 6 months of continuous treatment with other babs meds and herbs. Otherwise the herx could land you in the ER.
Some docs are pulsing babs meds but I do not feel that will work and the herxes could be horrendous.
Lariam is another possibility.
I do not feel that clindamycin is very beneficial without quinine.
If you are not taking it then I would also highly suggest adding in high dose lumbrokinase.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Gwb-thank You!!! I am on 3 tsps mepron. We are discussing coartem at next appt.
Bea-i have done malarone and mep at the sane time. I have also done ivermectin, albenza, biltricide, alinia for 4-6 weeks. Is iver used for babs? I have not seen that.
My doc does rx primaquine and chloroquine. My llmd is amazing.
I am on liposomal art that i get thru hopinkton compounding pharm.
Did you do clinda and quinine?
Posts: 77 | From Denver | Registered: Feb 2012
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posted
panicphreak -- I do not have tickborne illnesses -- my husband was the patient. Today is the one year anniversary of his death on 10/9/12 from ARDS (lung failure)and splenic infarction (blood clot in the spleen) due to babesia duncani or some as yet unnamed uncategorized strain(s) of babesia.
It is a long and complicated story -- Steve got 2 new tickbites 5 1/2 and 3 months prior to his final hospitalization. Nothing that had worked in the past seemed to work after the 2nd new tickbite.
For 8 years hubby thought he was allergic to mepron due to a very very severe reaction to trying that med in 2003. So we used other less effective nmalaria and antiparasitic meds and herbs for the next 7 years of treatment. Those treatments included artemisinin, low dose quinine and oral clindamycin, low dose primaquine and chloroquine, Bactrim, alinia, doxycycline, zithromax, plaquenil, cryptolepis, daraprim and coartem -- meds and herbs in various combos and doses. I probably left a few off the list.
When he finally was tested for babesia duncani after being sick for 10 years his titer was 1:2048. After 4 rounds of IDSA/CDC dosing with quinine and IV clindamycin in conjunction with oral malarone at 6 tablets daily the titer came down to 1:512.
He did 2 more rounds of the IV clindamycin and quinine -- total of 6 rounds (4 ten day cycles and 2 twenty-one day cycles) in conjunction with the malarone again.
That is 4 rounds before the retest and 2 after -- combined with malarone both times.
I need to point out that all of this aggressive babesia treatment began in January 2011. 11 months later after switching to lariam and oral doxy and continuing with the malarone he still had a positive blood smear from Clongen for babesia.
That is when we added in artemisinin, oral flagyl and ivermectin. After 4 months on this 6 item combo he stopped all antibiotics, antimalarials, antiparasitics and killing herbs for the first time in 3 years. He was off meds for 2 months and did pretty well -- actually felt the best he had since getting sick 12 years prior -- but babesia symptoms were starting to creep back.
A couple of days before doing a planned med challenge and retesting he got the first new tickbite. We also did a live blood analysis with a phase contrast microscope around that time. Babesia was seen on 2 views -- I have a flash drive of this that was posted to you tube.
The hospital refused to believe that my husband could have babesia and refused to talk to his LLMD for the entire month he was in the ICU (3 weeks on a ventilator). On the day of his death we got the report from Clongen that found babesia on a blood smear. Subsequently Fry Lab found by PCR 3 different unnamed uncategorized strains of babesia like blood borne parasites that are listed in the GenBank.
I have recently had some communication with the Virginia Department of Health and still hope to get the CDC involved in testing to identify exactly what strains of babesia my husband had.
It should also be noted that during the 11 months of aggressive treatment for babesia in 2011 hubby was hospitalized 5 times with fevers over 102. 3 times they identified serratia marcescens in his blood and they could not culture a pathogen the other 2 times.
He started having titers to ehrlichia and anaplasma and even rocky mountain spotted fever during that time. We did not know of a new tickbite then -- Steve and I and his LLMD felt that the aggressive treatment for the babesia had brought out infections including the serratia which had been in hiding.
3 times during that 11 months he tried to switch to pulsing babesia meds. Each time within 2 or 3 days he started having increased headaches, increased dizziness/off-balance, increased nausea/vomiting/dry heaves, and return of Parkinsonian tremors and other movement disorder symptoms.
It should be noted that IV flagyl was the med that triggered many of the fevers in 2011 and what triggered the lung failure in 2012. Hubby could tolerate the oral med without problems but IV is much more potent.
From my reading of the medical literature ARDS in babesia patients has been triggered by the beginning of "successful" treatment of babesia. By this I mean treatment which was bacteriocidal and not bacteriostatic. If I understand it correctly severe die-off or a herxheimer reaction if you want to call it that triggers an immune response similar to a cytokine storm.
When babesia meds are continued after ARDS begins the survival rate is around 50 percent which is almost identical to the survival rate of all severe ARDS patients regardless of the cause of the initial lung insult.
I did get my husband one week of mepron and Zithromax while in the hospital by going to the medical ethics board, but it was too little too late. The splenic infarction occurred sometime during those last 2 weeks in the hospital.
I am not writing all this to scare you. I just want all tickborne patients to fully understand the potentital seriousness of severe babesia infections.
My husband had 3 days of shortness of breath before going to the ER. Air hunger had never been one of his babesia symptoms. He was initially diagnosed with pneumonia based on a chest x-ray. We thought that was strange because he was on IV Zithromax and factive and amantadine at the time.
The local hospital kept him on his babesia meds and changed his other antibiotics to treat empirically for bacterial pneumonia. 3 days later his pulse ox dropped very suddenly into the 50's I think it was and he went into afib. He was transferred by helicopter to the larger teaching hospital at that point and that is when things got really ugly.
That is probably way more info than you wanted, but hopefully I answered your question.
As to the ivermectin -- Dr F at F Lab is one of the first docs to suggest that med. He uses it in patients with FL1953 (hubby tested negative for that coinfection). Several LLMD's are now using ivermectin for all patients with blood borne protozoans such as babesia and FL1953.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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