As part of my treatment plan for Bart/Ehrlichia/Babesia I am going to take 400mg of Doxy per day [200mg twice a day], just wondering if anyone has taken this dose for months [3-10] on end? Is it safe to take a dose this high long term provided one is taking probiotics to protect the gut? Are there any known side effects from a long term dose this high? Should I opt for 300mg per day instead if for some reason I can't tolerate 400mg? Thanks!
Posted by ohioperson22 (Member # 47837) on :
A possible side effect is increase intracranial pressure (also called benign intracranial hypertension, or pseudotumor cerebri).
This is when cerebrospinal fluid pressure increases within the central nervous system. It is very bad.
It usually presents with swelling of the optic disk in the eye, but may not, along with very bad symptoms, like loss of vision, severe headache, etc.
It can be treated with a spinal tap, as well as acetazolamide, but you don't want it to get to the point where either of those are necessary.
You should google the topic "doxycycline intracranial pressure" and educate yourself about the matter.
I don't think it is very common, but some articles note that ANY headache with doxycycline is suspect for increased intracranial pressure.
Having said that, many people do take doxy (not at that dose, though) for years on end for acne.
If a patient has coxiella endocarditis, they may need to be treated for up to four to six years with doxy.
Posted by TexasBartonella (Member # 47977) on :
Ohio, is that side effect only typically seen in high 400mg doses? What about lower 200-300mg doses? Keep in mind I'll be taking other drugs with it as well [mycobutin, zithromax, plaquenil and malarone]
Posted by Keebler (Member # 12673) on :
- To safely tolerate treatment . . . and good liver support can also help minimize cranial pressure so that toxic inflammation does not build up. Addressing infection can also do a lot to relieve cranial pressure.
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages -
Posted by ohioperson22 (Member # 47837) on :
quote:Originally posted by TexasBartonella: Ohio, is that side effect only typically seen in high 400mg doses? What about lower 200-300mg doses? Keep in mind I'll be taking other drugs with it as well [mycobutin, zithromax, plaquenil and malarone]
I don't really know about that, but it would seem logical to me that a higher dose would make that side effect more likely.
For reference, I've been on doxy 200 mg/day for three months so I'm not saying don't take it. I'm just saying keep your eyes open, so to speak, about severe headaches and other symptoms which may need urgent medical attention.
Posted by TF (Member # 14183) on :
Doxy is NOT the drug you want to take during the summer. At 300 and 400 mg, the chances of getting the dreaded doxy burn are great.
This is a chemical burn that often affects the hands. See this thread:
You are going to have to be extremely careful if you take this med during the summer and in Texas to boot.
You will have to wear light cotton gloves when you drive for any length of time, a hat any time you are in the sun, and really will just have to avoid being in the sun at all.
Here is Burrascano on the dosages of doxy it takes to kill lyme:
"There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen." (page 14)
At lower doses, doxy just stops the lyme from multiplying, but does not kill it. (It is "bacteriostatic" at lower doses.)
Because of the side effect of the chemical burn, most lyme doctors do NOT prescribe doxy in the summer. That is the safest thing.
Posted by TexasBartonella (Member # 47977) on :
TF- thanks for the post. I have no choice, I need to get well ASAP, so I will take the Doxy this summer. Hopefully I won't get burned, and I will take protective measures such as zinc oxide sunblock and clothing. Obviously if I keep getting recurrent chemical burns I would drop the Doxy this summer but hopefully it wont happen.
BTW- I dont think I have lyme but rather Ehrlichia and maybe Bart. So I'm taking the Doxy mainly for the Ehrlichia...hopefully even lower doses will help with that if I can't tolerate the 400
Posted by Keebler (Member # 12673) on :
- Glad TF caught the "sun" so to speak. From my file notes, hopefully of help:
Doxycycline cautions:
1. Even autumn or winter sun, even early morning or late afternoon sun can burn. "Doxy burns" can be very rough.
avoid sunlight on your skin (even "bounced" sun - or through a window) even for weeks after stopping doxycycline if you go onto a different antibiotic.
2. WATER - drink enough water so it washes down well into your stomach right away and not lodge in the esophagus.
Food with doxy is vital to protect stomach. But no dairy. Do not take with any multi minerals, either. The condensed minerals in supplements will lessen the medicine level and make it not as effective.
A substantial meal, in the middle with some food before and after the doxycycline really matters.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after
Avoiding gluten can help with the stomach, too.
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down.
PROTECT EARS / HEARING - when taking certain Rx, the ears need protection. Ear plugs with a hair dryer . . . decibel rated muffs with a blender, vacuum, lawn equipment, etc.
Careful around loud music and best to avoid in the ear pods. There is a link in the Liver Support thread that explains why.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
EAR / HEARING PROTECTION note of vital importance, too.
PROBIOTICS also vital, take a couple hours away from antibiotic (both clock directions) -
[ 06-11-2016, 05:49 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- You cannot risk even ONE Doxy sunburn. These are like none you've ever had.
Minocycline is usually switched out during sunny months for doxycycline.
As for having no choice other than to take doxycycline, there are other combinations to consider. You might address some infections with the minocycline now and use doxycycline later for the ehrlichia, for instance - or for whatever reason you are drawn to that
I would not think even zinc oxide would be wise if thinking of being out at a function or sitting by a pool. Best to just avoid all sun exposure.
Protective clothing / gloves / parasol helpful when walking to car, into a store, to the mailbox
and cotton white gloves in the car, too, can help. But also consider other options consider the sun and where you live.
Good luck. -
Posted by TexasBartonella (Member # 47977) on :
thanks keebler. do you or anyone else know if doxy on an empty stomach can burn a hole/ cause ulcers in the stomach if not taken with food? Ive taken it last couple days without food and felt fine but if there is a risk I will take it with food.
Posted by Keebler (Member # 12673) on :
- Keeping torso upright for a half hour is the major help.
Still, as for on an empty stomach, I would not risk it since you will be on Rx for a while and really need your stomach lining. You may seem to do okay with it now without but it can certainly catch up to you. So, yes, there is a risk, IMO.
Don't take with dairy as your food, thinking it can coat your stomach, they can make the Rx less effective.
Oh, if you do switch from doxy to mino, your skin can be subsecpible (sp ?) to the sun for a few weeks after stopping.
Good luck. -
Posted by Keebler (Member # 12673) on :
- I mentioned a sun parasol. It should be an umbrella specifically for blocking the sun. Regular umbrellas will not do. They must have a certain certification.
Even then, be mindful that bounced sun can do you in. The sun umbrella would be for the short times between your transportation and building.
Why go this far? Because of your eyelids, your scalp (part burns can be brutal, too), tops of ears and that no sunscreen can really match the protection you need but also that even zinc oxide just can't be put everywhere and it just can't work as we might think, either.
White cotton gloves can be found at most drug stores. Skin cancer groups would also have all this detail.
A sense of humor and creativity when asked about your new fashion accessories is essential, too. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TexasBartonella: thanks keebler. do you or anyone else know if doxy on an empty stomach can burn a hole/ cause ulcers in the stomach if not taken with food? Ive taken it last couple days without food and felt fine but if there is a risk I will take it with food.
- YES!! Protect your stomach at all costs!! You must have it intact or you cannot get well.
It is insane to take it on an empty stomach.
(sorry, rant over)
Posted by TF (Member # 14183) on :
See this webpage from a lyme book. It covers doxy dosage for ehrlichia and gives other treatment options for ehrlichia.
Usually, 28 days of doxy will do it for ehrlichia. I suggest you totally stay out of the sun when on doxy. Especially if you only have to take it for 28 days. Small price to pay to avoid the horrendous doxy burn.
Posted by micul (Member # 6314) on :
quote: do you or anyone else know if doxy on an empty stomach can burn a hole
If you have a sensitive stomach, or are prone to stomach problems, then you should take it with food.
If you decide to take high doses on an empty stomach, then be sure to drink enough water (8oz) with it.
You can alternate how you take it: empty stomach first thing in the morning before breakfast, and then with food at night.
Remember that Doxy alone will cause the ketes to go into cyst and other forms, so it is always best IMO to add a good cyst killer with it for 10 days in a row, then take 2 weeks off the cyst killer, and add it back with the Doxy in an ongoing regime for your treatment duration.
Liver support supplements like milk thistle, and all antioxidants will greatly reduce cyst busters performance, and should be completely stopped while taking drugs such as Flagyl, Tinidazole, Sectnidazole, and Ornidazole IMO
Posted by WPinVA (Member # 33581) on :
I did.
Of course it is natural to be concerned about the meds. But keep in mind, it's certainly not "safe" to let the infection fester in your body.
Posted by TexasBartonella (Member # 47977) on :
Lymetoo, do you have evidence/links that show Doxy can cause ulcers if taken without food? Just curious.
Does the food it is taken with need to be 100% free of calcium or magnesium? I often eat foods first thing in the morning with tiny amounts of those elements- is that a problem?
Also, avoiding the sun would be impossible without staying indoors 24/7...but as long as I run fast from my car to where I'm going I should be okay? [i.e. not staying to exposed outdoor sunlight for more than 60 seconds at a time]
Posted by TexasBartonella (Member # 47977) on :
Oh, one more thing- should I opt for Doxy Monohydrate instead of Hyclate? I've heard it doesn't harm the stomach lining as much? I can request that version instead if it can be taken without food/is easier on the stomach.
Posted by Keebler (Member # 12673) on :
- Calcium, magnesium naturally occurring in your VEGETABLES or small amounts of non-gluten grain-like wild rice or quinoa, should be fine but not in any dairy products (no milk, yogurt, cheese).
If you use a nut milk from a package, be sure it does not contain added minerals. -
Posted by bluelyme (Member # 47170) on :
That plaquinil may reduce immune sx and get regular eye exams ...bart and erlichia without lyme.?..it is likely borellia lonestarii and will not show up on test..you can see it via microscopy. Dobyou have band 41? Slow n steady wins rhe race its a marathon not a sprint .detox detox ,is what i have heard vets say..best of luck texas bart keep is updated ...look into all modalities ...
Posted by TexasBartonella (Member # 47977) on :
bluelyme, what is the standard treatment for borrelia lonestarii? never heard of that. Does doxy hit that one? What lab tests for it?
I do not have any pain, any bad fatigue, brain symptoms or joint issues- hence why I don't think I have classic lyme. My my main symptoms are GI problems, low NK cell counts, muscle twitches, sleep problems, numb hands when waking up, low body temp [97], and stuff like that.
Posted by TF (Member # 14183) on :
You may not have "classic lyme" as you call it. You may have a lyme-like disease called STARI or Masters disease.
See this webpage and this quote:
" In addition, the STARI patients were less likely than those with Lyme disease to suffer from accompanying symptoms such as joint and muscle aches, fatigue, headache, and stiff neck."
You treat STARI like you treat lyme. It is believed that the Lone Star tick transmits this disease. It is a large tick with a white dot on its back. These ticks are very aggressive and will run after a person and bite them.
Also, I believe that there still is no test for STARI. So, you get diagnosed based on symptoms and response to lyme treatment.
Regarding doxy, if you continue taking it on an empty stomach, you will get horrible reflux, eventually vomiting, and will have to stop the doxy all together.
So, good lyme doctors ALWAYS tell their patients to take the doxy in the middle of a meal. That is the only way you will be able to continue taking this medication.
Also, do not lie down for at least 30 minutes after taking the doxy. If you do, you could have reflux and the doxy will burn your throat badly.
Don't learn things the hard way--by experiencing them. Learn from others on this board who have had the terrible experiences. We are trying to spare you what we went through.
Read the insert that comes with the doxy. It will tell you that if the doxy upsets your stomach, you may take it with food.
The insert will also tell you the things you should not take along with the doxy.
Posted by TexasBartonella (Member # 47977) on :
thanks TF, I will look into STARI more- are there are any good sources on that besides what a google search will reveal? Would the high dose Doxy [and Zith and Rifabutin] I'm taking hopefully be able to kill STARI? It seems many LLMDs are not familiar with it?
Also, what's a good snack recommendation to take Doxy with? Can it be a heavy meal, or a meal with some magnesium/iron/calcium as long as its not a dairy product or beef [iron]?
Posted by TexasBartonella (Member # 47977) on :
I just took a dose of Doxy with Milano cookies and they have 4% daily Iron per serving...no good?
Posted by TF (Member # 14183) on :
You should not be eating cookies. If you do, you will get thrush (yeast) and have another problem to deal with.
Also, cookies are not a full meal. You need to take this very seriously or you are going to get very sick from the doxy.
This is what one website says about taking doxy:
"Do not take iron supplements, multivitamins, calcium supplements, antacids, or laxatives within 2 hours before or after taking doxycycline."
So, you don't have to analyze the food you are eating. Just don't take an iron SUPPLEMENT or vitamin supplement or calcium supplement or antacids with the pill.
Read the instructions that came with the doxy.
Have you read the Burrascano Guidelines? If not, that is where you should start to get your education on this disease. Be sure to read the anti-yeast diet rules, p. 34.
Just FYI. I don't know what most people take. That sounds like an awful lot to take for a long period of time. I've never taken more than 100 mg twice a day.
Posted by momintexas (Member # 23391) on :
I'm jumping in here late. MANY great points have already been mentioned from people with experience here.
I'm not sure how long you've been taking the Doxy, but consider starting slow.
If you have issues, try 50 or 100 to build up to the 400 per day. That can be a tough dose to start out with.
I always took it in the middle of my meal to avoid stomach upset.
Be sure not to take it before you lay down to avoid burning your esophagus.
I had to take Doxy during the summer in Texas as well and I am as fair skinned as they come.
I only had 1 issue on my hands from driving but it was bad and took a long time to heal.
For what it's worth, I was on it long term and had no issues come from it.
Posted by TexasBartonella (Member # 47977) on :
thanks momintexas. how long did it take your hand burns to heal? if i apply zinc oxide sunblock on every inch of exposed skin and don't even drive in my car for more than 8-10 min at a time should I be ok?
Posted by momintexas (Member # 23391) on :
It was quite a few years ago, but I believe it was a few weeks.
I would suggest gloves when driving. My hands were the only thing I ever had an issue with.
The beach trips I mentioned below, I was under an umbrella, zinc oxide all over, long sleeves, shorts, hat and kept my feet covered at all times etc.
Here's a reply for another post that I responded to: