I have Chronic Lymes for years. I've been taking Plaquinil for many months. My LLMD says that most patients are on it.
I was wondering who out there is also taking Plaquinil, and if so, do you feel better while on it?
I'm not medically trained, but here's what I find on the internet for your consideration:
Plaquenil is a drug used to treat malaria and also in autoimmune conditions such as lupus and rheumatoid arthritis.
The references I have found as to using it in Lyme treatment combine Plaquenil with another medication at the same time.
I wonder if your doc is treating you on the assumption that you have an auto-immune disease and not a bacterial disease -- ? That is the position of many MDs, based on the traditional view of Lyme as easy to cure, and any leftover symptoms are an over-reaction by your immune system to a disease that is no longer there.
I can't access the ILADS [dot] org website at the moment -- it seems to be down for maintenance -- so can't look there.
I would ask your doc if he sees Lyme at your stage as an auto-immune condition. If he does, then he's likely not an ILADS-style physician.
The following is from wikipedia, under 'hydroxychloroquine', which is the generic name for Plaquenil:
"===> Side effects
"Side effects are difficult to anticipate, and should be reported to a doctor immediately if new symptoms develop or old symptoms change in intensity. Generally side effects are not common, but can include (for short-term treatment of acute malaria) abdominal cramps, diarrhea, heart problems, reduced appetite, headache, nausea and vomiting. The symptoms for prolonged treatment of lupus or arthritis include the acute symptoms, plus altered eye pigmentation, acne, anemia, bleaching of hair, blisters in mouth and eyes, blood disorders, convulsions, significant vision difficulties, diminished reflexes, emotional changes, excessive coloring of the skin, hearing loss, hives, itching, liver problems or failure, loss of hair, muscle paralysis, weakness or atrophy, nightmares, psoriasis, reading difficulties, tinnitus, skin inflammation and scaling, skin rash, vertigo, and weight loss. Hydroxychloroquine can worsen existing cases of both psoriasis and porphyria.
"The most common side effects are a mild nausea and occasional stomach cramps with mild diarrhea.
"One of the most serious side effects is a toxicity in the eye (generally with chronic use), and requires regular screening even when symptom-free. The daily safe maximum dose for eye toxicity can be computed from one's height and weight using this calculator.
"Toxicity from hydroxychloroquine may be seen in two distinct areas of the eye, the cornea, and the macula. The cornea may become affected (relatively commonly) by an innocuous vortex keratopathy and is characterized by whorl-like corneal epithelial deposits. These changes bear no relationship to dosage and are usually reversible on cessation of hydroxychloroquine.
"The macular changes are potentially serious and are related to dosage and length of time taking hydroxychloroquine. Established maculopathy is characterized by moderate reduction of visual acuity and an obvious "bulls eye" macular lesion. End stage maculopathy is characterized by severe reduction in visual acuity and severe atrophy of the retinal pigment epithelium.
"A type of enzyme deficiency (enzyme G6PD) found most frequently in those of African descent can develop into severe anemia and should also be monitored. Children are more sensitive to hydroxychloroquine than adults are, and small doses can be potentially fatal.
"Hydroxychloroquine generally does not have significant interactions with other medications but care should be taken if combined with medication altering liver function as well as aurothioglucose (Solganal), cimetidine (Tagamet) or digoxin (Lanoxin). It will transfer into breast milk and should be used with care by pregnant or nursing mothers.
"===> Overdose symptoms
"Symptoms of overdose can occur within a half-hour of taking the medication. Overdose symptoms include convulsions, drowsiness, headache, heart problems or heart failure, difficulty breathing and vision problems."
My LLMD had me on plaquenil, and I've read several Lyme patient testimonials stating use of this medication to treat Lyme and co-infections.
I was on it for awhile during my first year of treatment. I had a very strong Herx reaction and stopped taking it, as advised by my LLMD. I was on it a second time later in treatment, but only temporarily. My LLMD tends to have me rotate and change treatment, depending on my symptoms and reactions to medications.
To my (limited) knowledge, Plaquenil is an antimalarial and also is known to have an anti-inflammatory effect. The later is why it is used in lupus and RA management, while both properties can make it useful in treating TBI. The anti-inflammatory properties are not, to my knowledge, due to any steroid effect.
I know my LLMD Rx's it to many of his patients. While in the past I was too sick to tolerate it, I've debated asking about it again since my bloodwork keeps showing systemic inflammation (through c-reactive protein and SED rate). Regular OTC NSAID don't touch my inflammation, and I would love to have a better solution as it causes me a lot of discomfort and symptoms.
My chronic Lymes caused neurological and autoimune problems. I have systemic inflamation. I guess it might be similar to Lupus but I don't have Lupus. My rheumatologist and LLMD diagnosed me with "Autoimmune Phenomenon". I doubt there's a code that that.
I have Hashimoto's, inflammatory arthritis, my skin gets inflamed as did my pancreas and liver, my bladder gets inflamed, etc.
I also want to add that I have a positive RA Factor.
My LLMD tested for Lymes and it came out positive. He is treating me for the Lymes, Candida and my low immunity. He always tests for CD57 which measures your immunity status. Mine dropped 100 points in one month and was low. He has me on supplements and is trying to build my immunity so my body can fight the disease without the use a very nasty medications. When I correct my Candida problem, I have to go back to antibiotics. I think that most patients with Lymes develop autoimmune issues due to the fact that Lymes reduces immunity. Unfortunately
once the autoimmune process starts, you can't shut if off.
Yes, I've read that low CD57 is a symptom of Lyme. My doc treats the Lyme, and the CD57 levels rise as a result. It sounds like your doc takes the opposite approach: give supplements with the goal of raising CD57 levels so that the Lyme can be treated.
Sorry but you have it wrong. My LLMD plans to treat my Lymes with antibiotics when my Candida is under control. If I get antibiotics now it would make my Candida to grow wild. My doctor treats Lymes and builds the body's immune system at the same time. He uses the Horse and the cart at the same time.
When you get Candida do you take anti-fungal meds? How long did it take for you to get rid of your yeast problen? I'm on Dyflucan and Nystatin at the same time. The doctor also put me on a very strict diet and I cannot cheat. No yeast products, no milk products, no red meat and no fructose. This also means no fruit.
He also says that Lymes patients should not eat milk products and to go gluten free.
It took me at least several months to get on top of the yeast infection ... I had been taking antibiotics against Lyme+, and my LLMD also prescribes a yeast-based probiotic called Florastor (generic: S. boulardii), to avoid the very serious problems that can occur when 'good' bacteria are wiped out of the gut by antibiotics, allowing 'bad' bacteria (such as potentially life-threatening C. difficile) to take over. Unfortunately I seem to be genetically susceptible to yeast infections, which is pretty rare, but does happen (tho most docs don't ever consider it.) My symptoms were similar to Lyme: brain fog, fatigue. I was also very bloated in the gut, but several other nonLLMDs missed the whole problem, and it was my LLMD who figured it out finally.
I was on then put on hefty doses of Diflucan, tho not given Nystatin. The two meds act differently, I think, so taking both doesn't seem unreasonable. I did not realize that the Diflucan (which I took for several months) can cause hair loss, and a lot of my hair fell out. It's all grown back in now, no big deal, just fair warning. Small and temporary price to pay for getting rid of the yeast infection, which can be very dangerous.
I put myself on a very strict diet similar to yours: 'greens & proteins' I called it (that is, vegetables and protein). No dairy, no fruit, no grains, and I tried to stay away from high-sugar vegetables like corn. I felt like h*ll for the first couple of weeks, while all the yeast was dying off, I guess ... and I dropped a lot of weight (from ~180 [which had crept on while I was sick and trying to eat to get energy] down to a more normal 120 for me). The weight loss happened too fast, but I was running scared of the yeast infection, which can be dangerous. So I overdid the whole thing, but eventually it all worked out. It's been over a year, and my weight is holding in the low 120s.
I have since then (after the yeast got under control) added back to my diet fruit and some grain -- some rice (not white rice), and esp. quinoa, which is a unique grain that has all the essential amino acids in it, which no other grain does. I think quinoa is actually a seed and not a grain, and you might have to look a while to find it, tho I see it in more stores now. It's pronounced KEEN-wah.
I'm not clear why red meat would be bad, tho I don't have a taste for it, gave it up years ago. I get protein from salmon, chicken, eggs, and grain/legume combinations like beans and rice, or beans and quinoa. Personal favorite: a big bowl of quinoa and canned [organic] garbanzo beans from Safeway and fresh blueberries with salt. Mmmm.
I have American Indian blood in my family, and I have finally realized that brought with it lactose intolerance, so I stopped all milk products and feel very much better. There are other ways to get calcium. I never liked milk, but was a cheese-a-holic, and I don't even miss that now. Do I miss ice cream? I thought I would, but I don't. I get my chocolate fix by sprinkling unsweetened chocolate powder (Ghirardelli makes a good brand) over a sliced banana.
Part of an anti-yeast diet is to alkalize your body, pushing the pH over to the alkaline side. That takes some doing, since the standard US diet is strongly toward the acid. I was told by my current nonLLMD doc that organic foods are best, including organic beef, to avoid more junk burdening your body.
I do take a load of supplements every day, some indicated by my doc. I take an NSI product called 'DIDA Clear', which used to be called 'Candida Clear', and there are still some of those old labels on the store shelves; it's all the same product. The capsules have herbs that are active against candida.
I also take the following each day, but everyone should check with their doc to be sure these don't interfere with other meds or medical conditions (all are over-the-counter except as stated):
thyroid supplements (by prescription)
(my thyroid quit on me a few years ago, maybe some connection to Lyme, dunno)
Evening Primrose Oil
Astragalus (immune support herb ... I can only do a little bec. it drops my blood pressure)
Grapefruit Seed Extract
Oil of Oregano
Multi-strain probiotics, and I switch up brands and blends every time I finish a bottle
Selenium (added this when my hair was falling out, but might not need it anymore)
Coenzyme Q10 (helps heart)
Fish oil (instead I take vegetarian DHA, since fish oil upsets my stomach)
Biotin (not sure why I take this -- ha)
B complex vitamins
Natural Vitamin E
Sublingual Vitamin B12 (also looking to add sublingual B6)
I was never one to take vitamins before all this, but it's working.
My Lyme doc isn't a vitamins-and-supplements kind of doc, which is too bad, so I was pretty far down in a hole by the time I found out about the systemic yeast infection and went to another doc to rebuild my immune system. I don't regret having taken the antibiotics, but wish I had not had this detour into more misery.
Stick with the diet -- if you are as scared as I was, you will do it and not miss any of your old favorite foods. I marvel now at the junky modern diet and am not surprised people are so sickly and overweight. I eat all I want, all the time, am never hungry, and maintain current weight without any effort at all.
You hang in there, and if you want to try any supps, do run the list by your doc to see if he objects to any of them just to be on the safe side.
I don't remember exactly how long I was on the antifungal meds, maybe a couple of months? But I changed my whole diet at the beginning of the treatment, and have stayed on the diet ever since, and intend to do so going forward.
I started the alkaline and candida diet when I started the meds a little over a month ago. I take Boniva,Calcium and Vit.D supps that were given to me by my Endocronologist. My LLMD is giving me the remainder of all my supps. It's a lot. I also take Biotin (5,000mg). It's a difficult diet! I just saw my MD a couple weeks ago and after one month of the diet and meds I thought I was going to get a blood test to see if my candida was under control. I figured it would be and was anxiously waiting to eat some fruit. I was told I need to go onto Nystatin also and was also told it will take a few months. Ouch! Not what I wanted to hear. I have no choice but to take care of myself.
Yeah, yeast not an easy thing to get rid of, but it's worth doing -- I feel SO much better now.
I'm glad your docs are watching out for you on this point. Keep reminding yourself that the diet will be over sooner the more careful you are now to stick to it. I would have liked to take Nystatin too, but none of my docs offered it to me. I think it works by direct contact against the yeast on mucous membranes (like the gut), while the Diflucan works through the blood stream, so it's a double whammy.
I know how hard it is, but it's definitely worth it! Hang in there, okay? Let us know how you do --
My LLMD did say that the Nystatin works in the intestines as did the pharmacist. So yeah, I'm getting a double whammy.
This week I had a new symtom that I never had before. I have had dry mouth and eyes for quite awhile off and on. It's gotten really bad and a few days ago I got a really bad salty taste in my mouth. Nothing would help and I drink a lot of water. Yesterday it went away and today I got it back somewhat but not too bad.
Hmmm, don't recall at this point. If you look up Diflucan and Nystatin on the internet at a detailed site like drugs [dot] com, it will give you the rundown on possible symptoms from the meds. I tend to read the sections meant for docs, because the ones for patients are less scary but also rather bland, and I like the details.
I do remember feeling pretty ragged while on the Diflucan, but I had also just stripped a lot of stuff out of my diet (as have you!) and my body thought I was stranded on some tropical island with no coconuts.
Drinking a good amount of water is one thing they might suggest, to keep the meds flowing through your system and washing the bad stuff away. I try to always re-read the drug information a couple of times while I'm on the meds, so I can keep track of any new symptoms and keep a neutral point of view about the effect of the meds.
As always, if you have any doubts, that's what your doc is there for. Take care!
I haven't been on here for a while and I just saw this placquinal question. I was told I had Lupus and I was put on that medication and prednisone. A doctor, who has Lyme himself said to get off that medicine along with prednisone because it can badly affect your already compromised immune system. I felt better off of them.
I was told by a doctor who has Lyme himself that Plaquinal and prednisone, which I was put on for a false diagnosis of Lupus, he said to get off that stuff it can screw up your immune system, I went off and felt better.
Good point. I just went and did some more reading, and it looks like Plaquenil does have steroid-like activity, which would not be helpful to fight a bacterial infection, for which an active and not suppressed immune system is needed. Haven't seen Lori707 post here recently, i don't think, but you might send her a private message through this site.
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