I am on the 9th week of treating Babs with Primaquine-- (its the treatment for malaria- Google-- WHO Primaquine Chloroquine )
I am feeling almost Fantastic most of the time-
Except for the Killer herx I had when I first started taking the Primaquine there is not any side effects--
On my last visit to my LLMD I had liver tests done and they came back Great--
The Only babs symptom I still have is insomnia and it seems to be getting Much better also--
I am now sleeping 6 to 8 hours a night-
I have been able to take naps in the day time which is something I have not been able to do for over 10 years --
I dont have any night sweats but I do still sweat alot when doing activities -
This could be caused by me being so out of shape - I hope so anyways --
Overall I am Super Happy with this treatment-
I only have to take One Primaquine pill per day-and it costs $1 per day --
I had been sick for 20 yrs with both Lyme and Babs-
I was Super Sick close to death when I started treatment a little over 3 yrs ago--
I had done Most of the Babs meds threw that time and I did get Much better
but I Always had problems with my supply of babs meds and this caused me to have to start and stop my Babs treatment --
I would Relapse -
Starting and stopping babs meds is a Bad thing to do - So dont do it -
Anyways - My progress on the this Babs treatment has been Great -
I will keep you posted on progress -Jay-
[ 12. January 2009, 11:04 PM: Message edited by: groovy2 ]
Posted by seekhelp (Member # 15067) on :
I may ask my LLMD about this treatment. Thanks!!
Posted by btmb03 (Member # 18394) on :
Thank you so much for posting this, for a newcomer to the lyme world it is truly inspirational. Congratulations for getting your health back, many of us dream of feeling "fantastic', I think I've forgotten even what it feels like to feel 'OK'. Enjoy your holidays with your nenwfound health!
Posted by Annxyz (Member # 9097) on :
Jay ,
SO GLAD TO HEAR THIS ! Thanks for sharing . Jay, have you had bad side effects with this ? How long can you take this drug for babs ? Is it toxic ?
Is this drug hard to get ? How long will you stay on it ?
Your progress reports benefit many . Babs seems almost like a hopeless pathogen. This is great to hear !
ann
Posted by psano2 (Member # 11711) on :
Hi Jay,
It's great to hear how well you're doing. Is Primaquine the only babesia med you're on right now, or are there others?
I know you've been on almost everything for babs. I would love to get off of Mepron due to the cost. It sounds like you're not on Mepron anymore. At what point did you get off of Mepron and on to Primaquine?
Patti
Posted by groovy2 (Member # 6304) on :
up
Posted by lymielauren28 (Member # 13742) on :
Hey Jay,
Well your post was perfect timing for me! I'm having a hard time getting rid of babs and am searching for something new.
Do you just take Primaquine by itself or are you taking abx with it? How long do you plan on staying on this?
I'm so glad this is working for you and that you're feeling so great - you deserve it!
Lauren
Posted by Brussels (Member # 13480) on :
There was another person in this forum (lou something I think) that used primaquine for babs.
She had been fighting babs for MANY years, with many treatments, massive amounts of mepron, never could interrupt drugs, and primaquine did the job for her. She was the first who posted on that.
Do you remember who she was, Jay?
She stopped posting long ago, I think her babs problem was solved for good with a combo using primaquine and something else. Wasn't it chloroquine??
Posted by lou (Member # 81) on :
Maybe you mean liz?
Posted by groovy2 (Member # 6304) on :
Hi All--
In this treatment both Primaquine and Chloroquine are taken in the beginning-
You take both for the first 10 days then you take just the Primaquine for the rest of the treatment--
After a few weeks of taking the Primaquine only I added in 2 Bactrim DS per day -
About 3 weeks ago I added in 324mg of Qualaquin per day split into to 2 doses-
I added these meds just to make sure that as many babs bugs are being killed as possible-
In 2 weeks or so I am going to stop all of the Babs meds to see what happens --
I will have been on these meds for close to 4 months by then--
Overall I feel Great and have Zero babs symptoms but I do still have Insomnia but this has been getting better also--
I have been getting 6 to 8 hours of sleep per day now and am getting deep sleep and have Dreams while sleeping-
I quit taking Mepron when I started these meds months ago-
The normal WHO Malaira treatment with these meds lasts about 2 to 3 weeks-- and is 90% effective even with long term Malaria --
The other person that I know of that has used this treatment was Lizz 28 -
I think she took Primaquine for about one month as far as I know--
Someone PMed me and said she had relapsed at some point in time- but I dont know how long it took for this to happen-
This is why I am taking the Primaquine for a extended amount of time --
I have had Zero side effects and my tests come back clean --
The only real draw back is the Extreamily Strong herx that happen when I first started these meds--
When treating Malaria the same Strong herx happens at the beginning also--
Both of these meds seem to be widely available now in the US --
Primaquine comes in bottles of 100 ONLY - and cost around $100 --
The Chloroquine comes in bottles of 25 ONLY-- and cost about $120 to $140 -
Make sure you doctor writes your script for these amounts because you are going to have to pay for the complete bottle so you might as well get all of what you payed for-
Walgreens carries these meds but there prices are higher --
Dont buy Primaquine from a unknown source because Primaquine is widely counterfeited -
I have been feeling Great and Almost Fantastic Most of the time--
I did feel kind of bad on my First monthly Babs cycle but it was not real bad and only happened the first babs cycle and has not happened again -
I have to warn you that the Herx that happens is Very Strong and somewhat scary--
ALL of your Babs symptoms Flair up alot for the first 2 days or so --
My herx was jerking around - shakes bigtime- Heart beat was Very high and blood pressure was Real Low--
Real Dizzy- Brain fog- blurred vision -
My Body temp was 89F for about 35 hours- get the blankets and space heaters ready because you will need them --
Have someone on hand to watch you -- and drink Gallons of warm Green tea -
My Herx started within 4 hours for first dose-
These meds HAVE to be taken at certain times ( X hours between doses )-
Its a little compacted to explain here but if you PM me I will explain it to you -
Overall I have had Great results with this treatment --and No side effects--
Only time will tell how successful this treatment is -- Jay --
Posted by mandy614 (Member # 16524) on :
Hi Jay
You say starting and stopping babs meds are not good...I ran out of mepron and will have been off mepron for a month before I get more.
Is this too long and will I have to restart like when I first started the 2 bottles I just finished?
I'm going to ask my LLMD about your med combo. I'm glad to hear it's working for you!
Posted by Brussels (Member # 13480) on :
Lou, yes it was lizz.
Jay, bad that she relapsed, poor girl. I hope she's better now, I think she is one of the oldest here fighting babs without success.
Posted by groovy2 (Member # 6304) on :
Hi All
I have been taking Primaquine for about 11 weeks now
I am Babs Symptom Free -
I have been sleeping better and a few times I slept 12 hours perty solid -- Nice -->
I have been having several dreams threw the night too --
My mind is Perty Clear but it dose take a hour or 2 for the Brain Fuzz to ware off from the sleeping pills that I am still taking --
At the moment I am taking One Primaquine pill- 2 Biaxian and maybe a Bactrim if I remember to take it --
My Liver tests came back clean -
I took some Quinine pills for the last month so my ears were ringing constantly but it has stopped now that Im no longer taking it--
Over All I feel Perty Good -
No Pain -
Energy level is Perty Good -
I still sweat like a pig when I am doing physical work tho -
But this seems to have lessened a little in the last few days -- Jay --
Posted by CherylSue (Member # 13077) on :
Great for you, Jay! That;s wonderful to hear.
Is primaquine a form of quinine? I don't think I ever heard of it.
Best, CherylSue
Posted by groovy2 (Member # 6304) on :
Hi Cherylsue
This is what Primaquine is made of --
DESCRIPTION
Primaquine phosphate is 8-[(4-Amino-1-methylbutyl) amino]-6-methoxyquinoline phosphate, a synthetic compound with potent antimalarial activity. Each tablet contains 26.3 mg of Primaquine phosphate (equivalent to 15 mg of primaquine base). The dosage is customarily expressed in terms of the base.
I dont have a clue what all of that means but I sure Feel Good --Jay--
Posted by Rianna (Member # 11038) on :
Hi Jay,
My LLMD wants me to start this right away SCARY MARY
He said he has had very very good response with Primaquine when used with Clindamycin/quinine, he said as long as its not used as monotherapy its excellent.
trouble is I cant get it here in the UK so will have to try Spain/USA - any ideas anyone?
Thanks Rianna
Posted by psano2 (Member # 11711) on :
Groovy2,
Did you have any experience with Plaquenil? My Dr ordered this for me, and I think I got it mixed up w/Primaquine. I'm supposed to start it (Plaquenil) in about 3 weeks.
Patti
Posted by groovy2 (Member # 6304) on :
I have not used Plaquenil so I really cant comment on it--
I feel Great tho --Jay--
Posted by Hoosiers51 (Member # 15759) on :
Jay,
I wanted to mention to you....I recently started minocycline. I take 100mg per day twice a day, but I wokred my way up in 50mg increments.
Anyways, this drug completely turned my sleep around, and I no longer need sleeping pills. It changed my circadian rythms, but also enabled me to no longer use any sleep meds! It was like a mini-miracle.
This may be due to it's anti-inflammatory effects......who knows but worked for me!
Unfortunately, it hasn't helped me with anything else yet.
Just wanted to share this information with you!
PS---last couple days I overslept and so now my sleep schedule is messed up again, but I still don't need any medications to fall asleep. But, I have noticed when it gets messed up, it eventually re-corrects itself.....it has been hit or miss lately, but the mino is still to thank for no more Lunesta, Ambien, Xanax, etc!
Posted by Hoosiers51 (Member # 15759) on :
PS---that was really off-topic....sorry!
Posted by groovy2 (Member # 6304) on :
Hi All--
This is my 2009 Update --
I Stopped taking the Primaquine 10 days ago--
I Feel Great -
I have Zero Babs symptoms So Far --
A few days before stopping the Primaquine the extra sweating I was having while working - --Just STOPPED -- Like turning off a light -
Even my room mate that I ride bikes with Also noticed that my Extra sweating had stopped-
He said-- Dude your not dripping everywhere -
I have Not had Any Night Sweats for months--
At the moment I am still taking 2 Biaxian and 2 Bactrim DS per day --
Now I have ZERO babs symptoms --
Last Saturday Night I did the Midnight Fool Moon bicycle ride - About 250 riders showed up -
Was not a real fast ride but not slow ether - there was a few to many Hills tho
I had Zero extra sweat -I was Totally Dry -
By the time I got home I had ridden about 35 miles -- Last 5 miles into the wind--OucH
When I got home I was Perty Tired - The next day I was still Moving Slow- Muscles Not sore at all
Today I rode about 20 miles to pick up some sleeping pills that got left behind at the Pharmacy when I rode there last Friday -- OucH -
Over All -- I feel Great --Jay--
Posted by groovy2 (Member # 6304) on :
Hi All--
This is my 2009 Update --
I Stopped taking the Primaquine 10 days ago--
I Feel Great -
I have Zero Babs symptoms So Far --
A few days before stopping the Primaquine the extra sweating I was having while working - --Just STOPPED -- Like turning off a light -
Even my room mate that I ride bikes with Also noticed that my Extra sweating had stopped-
He said-- Dude your not dripping everywhere -
I have Not had Any Night Sweats for months--
At the moment I am still taking 2 Biaxian and 2 Bactrim DS per day --
Now I have ZERO babs symptoms --
Last Saturday Night I did the Midnight Fool Moon bicycle ride - About 250 riders showed up -
Was not a real fast ride but not slow ether - there was a few to many Hills tho
I had Zero extra sweat -I was Totally Dry -
By the time I got home I had ridden about 35 miles -- Last 5 miles into the wind--OucH
When I got home I was Perty Tired - The next day I was still Moving Slow- Muscles Not sore at all
Today I rode about 20 miles to pick up some sleeping pills that got left behind at the Pharmacy when I rode there Last Friday -- OucH -
Over All -- I feel Great --Jay--
Posted by Rianna (Member # 11038) on :
Jay - You are a Legend
your story gives all us babs sufferers real hope
THANK YOU Rianna
Posted by groovy2 (Member # 6304) on :
Hi All --UP
Posted by Lymepool (Member # 15827) on :
Greetings and thanks for sending the details of the protocol, Jay. Hope we don't have to go this route, but at least we can prepare, if needed. Your advice is much appreciated.
By-the-way, I got a message that your mailbox is full, so you may wish to tidy it. I'm not surprised, you are probably getting tons of PMs for questions on the details of treatment.
Best Wishes for continued good health! Posted by CD57 (Member # 11749) on :
Jay -- you rock! Come back often, ok? Watch out for those full moons....you never know what you're gonna do.
Posted by lymielauren28 (Member # 13742) on :
Jay, I am so genuinely happy for you and as Rianna said you've given us all hope - thank you for sharing and stay well!!!
Lauren
Posted by groovy2 (Member # 6304) on :
up
Posted by mandy614 (Member # 16524) on :
Hi Jay
Can you please advise on my new babs protocol? My LLMD has me on bactrim, biaxin, bicillin, mepron. I just recently added in clindamycin 1,200mg a day. I am taking my first pill of primaquine today. I could not get quinine sulphate the pharmacist said it is no longer made here. The chloroquine he did not write a script for...
So, for babs I am on clindamycin, primaquine, mepron. I am unsure this is the right combo, especially with the mepron and bactrim. Please let me know what you think!!!
Best, mandy
Posted by mandy614 (Member # 16524) on :
Up for help
Posted by Hoosiers51 (Member # 15759) on :
Mandy,
Jay doesn't come to Lymenet anymore, to my knowledge, unfortunately.
Could you please keep us posted on how you do on the primaquine though? It's something I would be interested in trying some day.
FYI, the Bactrim/Biaxin combination is also said to treat babesia, believe it or not. (even though they are abx and not antimalarials)
I was lucky enough to speak with Jay a couple times, and what he has gone through really persuaded me that babesia CAN be beaten. But it is NOT easy, that's for sure, at least it wasn't for him! He wasn't on as much at once as you are on though. Not as many antimalarials. Well, maybe it's a tie since you couldn't get the quinine.
Best of luck, and keep us posted!
Posted by mandy614 (Member # 16524) on :
Thxs Hoosiers
LLMD called and said I need a specific test run to see if I have an insulin abnormality or something...if I don't, I can start the primaquine.
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Thanks!!
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