posted
Hi....I am officially diagnosed w/Lyme disease as evidenced by most of the symptoms & an extremely positive IGENEX test. Have done just about every tx. available incluidng 8 months of IV Rocephin......all w/o appreciable improvement
I have been on Placquenil (and antimalaria drug) for years, as I was originally dx. w/Lupus. Placquenil has been an exceptional drug for me & reduced by arthralgia by at least 90%.
Recently stumbled upon an article by a well known Lupus Dr. advocating the use of Quinacrine being used in conjunction w/Placquenl as they have a synergestic effect.
Quinacrine is no longer available in the US, as it went out of fashion when Placquenil came along, but is available by a compounding pharmacy. It's cheap.
However, there seems to be a lot of renewed interest in this drug. It has some amazing properties:
Strong aniprostaglandin action
Platelet aggregation inhibition
DNA, RNA polymerease inhibition
Antioxidant effects
Antihemolysin activity
Neutrophil and lysosoe stabilzation
Na-Ca exhange impedance
Hormonal interactions: antagonism of prolactin and insulin. (also some though that it helps process the bad estrogen more effectively)
Don't let the title scare you off (it's an article written about lupus). I believe the benefits of this drug can apply to many Lyme symptoms.
Even though it is no longer available in US, a compounding pharmacit can make this drug. Unbelievably, my insurance company even covered it b/c it is an approved drug for skin lupus.
The effects so far have been short of amazing. More energy, less fatigue, less arthralgia & less depression.
There is one potentail side effect that might detract potential users. Quinacrine contains a dye that has could turn your skin & urine yellow.
Most of the testimonials I have heard from people though indicate that it is very faint & not noticeable OR that it makes them look like they have a pretty suntan. Sometimes it stains the nail beds.
Thus far, I haven't experienced any yellowing of the skin, just improvement in my symptoms.
I have nothing but praise for this drug & I haven't experienced one negative effect.
Has anyone else tried this. Thoughts on this drug?
Johnniebear
Posts: 6 | From Overland Park Ks | Registered: Jun 2004
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treepatrol
Honored Contributor (10K+ posts)
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Keep us posted Thanks
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Has anybody else taken this ? I have the opportunity to try it and curious about side effects ,benifits etc..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Rumigirl
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posted
Holy crow!! I looked it up; it's Atabrine. I took this for a bad case of parasites (Giardia) in the '80's, after not being diagnosed for too many years. Got the parasites in India.
BUT the side-effects can be BRUTAL! I couldn't sleep more than a couple of hours a night for weeks on end, so ended up with drug-induced psychosis, which is a known side-effect for many. I know at least 3 other people who had the same side-effect.
I knew something was wrong, but was so far gone, I didn't know what was wrong or why. My poor husband had to come and pick up the pieces.
It also turned me yellow.
It's no wonder it's been off the market in the US for many years now. Maybe it will help some, but . . . be careful. If you do take it, warn your spouse/significant other, etc. to be on the look-out for such side-effects, as you may not know what hit you.
I didn't have adequate warning when it was rx'd. Although the doctor did rx a benzo in case it was needed. At that point, I didn't want any more drugs, so didn't take it.
Posts: 3770 | From around | Registered: Mar 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It may be that since you are using a compounding pharmacy, the dose &/or other things that go along with this might be mitigating factors for risks. Still, be sure to consider your ears / balance and become aware of any warning signs.
It's great that you report some welcome decrease in some troubling symptoms, still, be careful. Be sure the effects are from core anti-microbial effects and not just some masking effect by CNS stimulation. Take care.
Good luck.
Ototoxic drugs can cause permanent damage to hearing & balance.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Prevention; Precautions; Safety -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Since lyme & other tick borne disease can so often cause seizures . . . and damage to the nerve fibers any drug that is CNS stimulant can be a double edged sword and may not be worth it. Amy more CNS stimulation can be seriously dangerous for those with lyme / TBD.
Magnesium MIGHT be something to help balance that yet it's just a hunch I have. Usually best to avoid such CNS stimulating Rx and look for other options that don't have this effect.
It's much more likely that it's the drug, itself - not the coloring - that can cause the yellow skin as an indicator of serious liver damage - or kidney stress. Even if one's skin does not turn yellow, this is still something to consider.
Dyes can have far reaching effects, too, aside from the liver / kidneys.
Cross search various independent science sources for any possible hepatotoxicity & renal toxicity concerns - as well as for eye issues.
Never rely solely on the manufacturer's detail. Never rely solely on any one source or even just on a few.
[see detail about porphyria in thread below & how it often can be involved for those dealing with lyme]
Last Review Date: 9-14-2006
There are often safer options for Rx that may be too risky. If so, great. If not and a short time on a potentially risky drug cannot be avoided, there MAY be ("may" being the operative word here as it's not guarantee) some things we can do to help offset risk.
Where porphyria might be involved, avoidance of the drug is the safest action. There are nearly always other ways to approach any infection that don't include drugs that could trigger porphyria. Yet there are also safety preventions to consider as well.
what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . .
Some links here are expired yet you can find the detail by searching with article titles / authors. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Oh, my. THE DATE, the DATE - of this thread.
This is the last post that Johnniebear posted. I had hoped to read up on progress & found no further posts - so was surprised to figure out after a few double looks that this is ten years old.
Still, the comments are good to have here just in case others might consider it but had I realized it's ten years old I might have saved my tender hands & tired mind. I would hope that everyone knows to always consider ototoxicity for anything they take.
bluelyme,
As you brought this up with questions for others who may have taken this, I hope the links are of some help to you.
Rumigirl's reply is an excellent account of why you may do better strolling down some other avenue. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bluelyme
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posted
Thanks rumi and keebs ...i just got unpurpled from my bout with bactrim yellowizing doesnt sound fun ...i found some old army stuff on it kinda scary ..its a acridine molecule but i wonder about why they use it for chemical sterilization ..eeek sound caustic
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Why take it when you can take something less dangerous? What specifically were you thinking of taking it for? For parasites, like Giardia, Flagyl is usually used instead.
With Flagyl, of course, take nystatin, or something else, to prevent Candida, plus, of course, probiotics in between meds.
It's off the market in the US for good reasons.
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bluelyme
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Ya did tini ,herbs, alinia just wanna be done with it but doesnt sound worth it
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Rumigirl
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quote:Originally posted by bluelyme: Ya did tini ,herbs, alinia just wanna be done with it but doesnt sound worth it
What's the "it?" Parasites? Lyme? Everything (kind of big pot there.
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bluelyme
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Dx giardia , toxo like organism ,unconfimed babs (those are known apicomplexians ...and idk if i got rid of ascaris...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Rumigirl
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quote:Originally posted by bluelyme: Dx giardia , toxo like organism ,unconfimed babs (those are known apicomplexians ...and idk if i got rid of ascaris...
Do you have a doctor directing/overseeng your treatment?? You certainly should if you are treating Giardia and using meds! As I mentioned, Flagyl is one of the meds used for Giardia. But I repeat, you should have a doctor working with you on this!
Posts: 3770 | From around | Registered: Mar 2008
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Thanks rumi , reg gi doc was useless (didnt acknowledge test as it wasnt from quest) alt doc wanted 1k for herbal treatment .llmd is a tool .(gives me regular labs like cbc etc) The fnp that gave me the script said the neuro stuff/yellowing is rare and goes away?
I will ask kinesiologist but i have some old tini and alinia. In all truth we are are own docs. Lymenet has served me better than the 35 providers i have paid!
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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