posted
I just had my first appointment today with an NP who practices along ILADS guidelines. She upped my doxy to 400mg/day total, and prescribed the following:
Azithromycin, Flagyl, Ocuflox Mepron,
My stomach doesn't like antibiotics under the best of circumstances, and I'm worried about the side effects of all these meds. I've read things about all of them, here and other places, but I just can't put it all together--does anyone besides me think this is an awful lot of medication?? I expressed my concerns to her, but she just didn't seem to think much of them. Right now, I'm feeling pretty scared. And I don't even know exactly why.
Kiwi
**** edited to remove dosages, please see Loub's post at the top of medical questions ****
[ 12-05-2010, 08:12 AM: Message edited by: sixgoofykids ]
Posts: 19 | From Hudson, WI, USA | Registered: Nov 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I am sorry you feel frightened. That's very understandable. But I have to tell you that treatment is not nearly as bad as no treatment. With the right kinds of support supplements and excellent self-care, you have a good chance at life.
Apparently, you are also treating babesia. That's important.
This does not seem too much, really, if you want to treat successfully. But, yes, you will feel it, sorry.
Are you also taking some good liver support and adrenal support supplements - B vitamins, Fish Oil, magnesium, too?
As the typical liver support, milk thistle is usually avoid with mepron (at least at the same time) there are other things but the NP would be best to guide you with that. Liver support is the main feature that helps you lessen the reactions. Superb nutrition, rest and just the right amount of non-aerobic movement that you can enjoy.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
hang in there, it gets tough but this is what it takes...
yes, detox and vit/mineral support are a must. so do find a ND to help. naturapathic sp? got lyme brain!
the number of 'pills' in a day you will take is CRAZY! but it will be the only way to be well. put them in a container for the day and keep them with you.
I was given permission to take weekends off from the meds. I can endure a lot but did when "I just needed a break" and many protocols are based on 5 day week.
best
Posts: 40 | From CT | Registered: Dec 2010
| IP: Logged |
posted
I was on intense protocols like that. Start one med at a time, wait three days or so before you start the next, that way you can tell which med it is if you have a reaction.
That is an intense protocol. Hang in there, it will be tough, but it sounds like you have a good doctor who is going after both babesia and Lyme in all three forms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I know the feeling. Im a very overwhelmed person to begin with. and I'm only on one antibiotic and my stomach is already so messed up.
but you know what? this is what we have to do to get to the goal. And theres SO many people on here who have been thru this. these boards are GREAT advice. anytime you need help just come here and ask people. alot of people on here have been there done that
just know youre working your way to good health. even thru the ups and downs.
Posts: 995 | From somewhere out there | Registered: Oct 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
An erasable white board can help.
Especially if you are lyme brain.
If you write everything down you know what you are doing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
I think one of the things I hate the most about these illnesses is those ups and downs...I've had three good days in a row, and I'm so inclined to think that I'm getting "better"...but based on everything I've read, I doubt that that's the case at all.
My NP did outline a pretty thorough regimen of vitamins and other supplements (cod liver oil, B vitamins, probiotics, herbs, etc.) but she also told me to be taking milk thistle w/everything...didn't say anything about taking it opposite Mepron. I suppose that's something to look into...?
And speaking of Mepron, is it really as bad as what I've been reading? I'm not one to believe every single thing I read on the Web, but I've seen some people say they "want to die" after they start it. Can anybody offer a less frightening opinion?
Posts: 19 | From Hudson, WI, USA | Registered: Nov 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Less frightening? It may be a bumpy ride but it will work out to be okay, with good planning.
My regular GP would not prescribe mepron for me (and I had no LLMD) so I can't say how bad it can be. But living with untreated or undertreated infection is hell, too. I would have rather had a solid treatment plan than suffer for decades trying to figure this out on my own. Mepron's cost of $800. a month then was far out of my reach. I don't know if my alternatives worked or not.
I have read this: by treating the babesia early on, treatment for lyme has a far greater chance of success. As I recall you also deal with anaplasmosis. So, addressing babesia will also help make treatment for that easier &/or more effective.
But, back to getting through this . . . it's okay if you feel icky, awrful, out of sorts, under the weather - however - but others have gotten through and their experiences can help you.
If you expect to feel ill (sorry, it's just the way it is) but also prepare your body to rest, eat as well as possible, figure out what kind of gentle daily movement is good for you (yoga or Qi Gong or Tai Chi sort of moves), massage, etc . . . being prepared and then enjoy whatever you can during that time (travel DVDs, art books, drives in the country, music - but not too loud on the ears, . . . .
You can control your environment and nutritional needs. It is going to be rough, but there are many things to help you manage that better. No doubt about it, how well you set this up can help manage better but it's still no walk in the park but it's for a limited time. Next December you could be dancing at holiday parties.
The language you use with yourself can help, too. It's okay to be honest with how you feel but the cells of your body will do better if you can be as positive as possible - or at least neutral with terms.
Feeling like you are "going to die" or "hell" are not terms that help so if you do feel that way, after the first few exclamations, see if you can just notice that it's a bit more rocky or less rocky than the day before or talk to your body a bit like it's the crew on a boat voyage. Not to sound to nutso here but everyone has self talk, affirmations, intentions, etc. So, I'm just suggesting that when done within reason, and not too yippy-skippy but cautious cheerful, that gives us some control.
When people ask how I am but it's rough day, I may say things like "crispy around the edges" and roll my eyes. I get a laugh and we move on. That's honest but sort of rolling with the punches.
I hope this does not sound preachy and I'm not verbal enough to really be precise or clear. Others could say all this in one sentence. But, I don know that I'm happier if I just accept that I'm not going to be on the Olympic teams today, or this week but, hey, it's a beautiful day and I love watching the clouds.
For symptom relief along the way, be sure to post questions and you will receive suggestions for what can help. If you are not sure what is going on, just ask.
� Protect your mood
Also be aware that mepron can cause a mood drop for some. If you are not caught off guard, that helps. B-vitamins, fish oil, magnesium can help with that but so can excellent foods. Maybe go through your music selections for the most uplifting tunes, etc.
� Protect your ears
The caution about not listening too loud and to avoid in-the-ear pods is that, when on many antibiotics, the ears are more susceptible to damage from lower decibel levels - and for up to a year afterward.
You need to know that Azithromycin (zithromax) can be hard on the ears in a couple of ways. Milk thistle is the best helper there but also be sure to protect your ears from noise. Even a hairdryer can damage ears. Wear ear plugs &/or muffs when around noisy appliances even if you don't think they are noisy. Try to avoid or sharply limit cell phone use, too. This really matters.
� Protect your liver
Re: milk thistle. Some LLMDs want patients to go ahead with milk thistle, some don't. Personally, I think it is best. The liver needs all the help it can get.
However, most supplements are not taken at the same time, but a couple hours either direction.
Probiotics are never to be taken with Rx or with most supplements (as some herbs have an antifungal property that will negate probiotics). Some don't. So, it's just good to separate out by 2 to 3 hours each direction:
Rx
Supplements (B-vitamins - especially B-3, niacin, are best with food)
Probiotics
(unless your doctor tells you specifically to pair up some things from those categories - this can also become complicated when something have to be taken with a meal and some on an empty stomach. Your doctor can guide you. -
[ 12-05-2010, 02:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- By reading how the liver works, it helps to understand what's happening to our bodies during infection and treatment regarding the stress. Just understanding all this helps so much in our ability to withstand the storm: -----------
� of the way down page one, there are lots of LIVER LINKS:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned your stomach. Yeah, the stomach often has a whole different travel plan than my body. Here's how I get it back in synch with the rest of me:
Ginger capsules are essential.
DGL, too.
Slippery Elm.
Quinoa Flakes are important to have in stock. Just add some boiling water and you have a bit of a meal that even the most jumpy stomach will accept.
GLUTEN-FREE diet often helps tremendously. Many LLMDs advise this.
===================
DGL, Slippery Elm, Marshmallow Root (from the plant, not the fluffy confection). And Gum Mastic.
Deglycyrrhizinated Licorice, also known as de-glycyrrhizinated licorice, or commonly referred to by the acronym DGL, is typically used as an herbal supplement in the treatment of gastric and duodenal ulcers. It is made from licorice from which the glycyrrhizin has been removed.
The usual dosage is 760 mg, chewed, 20 minutes before a meal. Studies of DGL in humans and animals against placebos showed that DGL significantly reduced the size of gastric ulcers and hastened healing, with 44% of the subjects obtaining complete healing, as opposed to 6% of the control group.
DGL has also been found to be an effective treatment for duodenal ulcers. In another study a group of 40 patients who had duodenal ulcers for 4�12 years were treated with 3 grams of DGL a day for 8 weeks, or 4.5 grams a day for 12 weeks, with all subjects showing vast improvement, with the higher dosage being the most significant.
An additional study shows that DGL's therapeutic effect is equal to the effect of cimetidine (Tagamet). . . .
. . . There are no known drug interactions with drugs used to treat ulcers. In Europe, South Africa, and Canada, DGL is marketed in a medicinal preparation called Caved-S. In the U.S., DGL is marketed as a herbal supplement.
DGL has also been reported to help treat aphthous ulcers (canker sores).[1]
WHAT IT DOES: Licorice root is sweet in taste and cooling in action. It detoxifies poisons from the blood and liver, and reduces general inflammation and pain.
It moistens and heals the lungs and digestive tract.
Excerpt:
. . . Almost 50 years ago, a scientist by the name of Revers reported that licorice paste reduced abdominal symptoms and caused radiographic evidence of ulcer healing.
However, about 20% of patients developed edema, headache and other symptoms due to overdose, leading to a loss of enthusiasm (Schambelan, 1994).
This led to the development of DGL (deglycyrrhizinated licorice), a form of licorice that does not contain the agents responsible for the side effects such as electrolyte changes.
The de-acidified DGL tablet or capsule form used in Europe and America is therefore devoid of any major side effects, and is effective for healing the intestinal membranes. . . .
- Full chapter at link above.
-=============
Just is just one of several similar products out there. DGL has saved the life of my stomach and can stop reflux within a minute.
If CANDIDA is causing the pain or reflux, in addition to PROBIOTICS, I have found OLE (Olive Leaf Extract) to be fabulous to help heal the gut from fungal issues. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Massage. I want to give that an honored category all its own.
If at all possible, get professional massages each week. There are so many reasons this will help and so many styles. Ask your local support group for good LMTs names.
More than even the detox factor and the central nervous system relaxation factor - and even the fact that massage lowers stress chemicals - is that massage can be a life-line regarding mood stability.
Acupuncture can help in all those ways, too. However, in my experience, massage was always most helpful. Although, due to cost, if none of this is possible, you might gather trusted family and friends and hire a LMT for one or two sessions to teach everyone some massage basics - maybe just feet, hands, shoulders. They you will have a wide circle for massage trades.
Only licensed LMTs should be working on the spine and jaw. -
[ 12-05-2010, 03:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler - that is some REALLY fantastic information, particularly from your first post. Not preachy, just very helpful and supportive. What helps is that so many people tell me the same thing: it's hard, but ultimately, it will work out in the end with good planning and, as you stressed, a good attitude.
Regarding B vitamins, is it preferred to take them separately, or can they be taken as good B complex? I'm not planning on taking any shortcuts because of cost, but it would be nice to buy one instead of a group. Not to mention taking a couple less pills.
Thanks for the quinoa recommendation...I have some here at home and will give it a try.
I'm going to formulate a plan for starting these things...I haven't even been taking a multivitamin for a couple of months, so this is going to be a bit of a shift for me. Earlier in this thread, it was suggested that I add the new meds gradually, and after this morning, I think that is a terrific idea. I took my second dose of increased doxy this morning, without taking other meds yet, and had a terrible bout of vomiting about an hour and a half later. I'm hoping that it doesn't become a routine thing.
Posts: 19 | From Hudson, WI, USA | Registered: Nov 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/