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Posted by METALLlC BLUE (Member # 6628) on :
 
I've never responded so harshly to a drug other than Bactrim when it came to debilitating herxheimer reactions. Normally, I am chronically ill at about 35% function, meaning I'm homebound but I can move on my own and exercise, but I have trouble going outside or extended distances by foot.

With the Rifampin, I'm now experiencing crippling pain, stiffness, intestinal upset, zero appetite, and my face is killing me with nerve pain. Psychologically, I feel confused, unable to focus and as though I'm not "conscious" per say of all I'm doing. My vision is also blurry and seems pixelated, a bit like a television when no station is available -- static. It's not total static, but rather appears to have this light overtone of static interfering with typical visual activity. Items also are more difficult to see from various distances.

The Rifampin is also causing anxiety and incredibly debilitating insomnia. My medication for sleep isn't even remotely touching it. The Seroquel helps me sleep but I wake up so hung over that it doesn't really make a difference since the end result is the same.

I'm also getting pain at the site of a previous surgical site where I had surgery on a perianal fistula. I can't tell whether it's a reactivation and a potential mess coming, or if it's just inflammation and causing a similar discomfort.

I feel sad, confused, then fine, then very anxious, then panic, then anxiety. It doesn't seem to progress into full blown panic. In-fact it's about 30-40% of the type of Panic Attack that would likely send most of us to the ER. It's also not persisting, but rather comes in spurts.

These symptoms aren't intolerable to the point where I will discontinue, but it's definitely pushing me to the edge. If I drop another 5%, it's time to call the doctor.

I've only been on it for 4 days. I began on the 6th of Dec, it's now the 9th, although I haven't taken the pills for today since it's 1 in the morning.

I suspect with such a sharp increase in symptoms that this drug is potent and absorbs quickly through the entire body. Is this right? Does this constitute Bartonella or (One of the infections Lyme patients typical respond to who have this unusual unknown pathogen?) Dr. B called it BLO? At anyrate, I was on Levaquin and still am, but I didn't see any results, so my LLMD added the Rifampin and felt it might create a synergistic effect.

Well, it's definitely a crippling Herxheimer, that I can tell. I don't get these reactions with other drugs. Tetracycline and Doxycycline for example take at least 2 weeks to cause this reaction. Bicillin caused minor symptoms of a herxheimer reaction too but that also took a couple weeks.

So, tell me what do you think? If it persists it will be life threatening eventually. Not eating, being unable to move, and systemic inflammation will lead to severe consequences. I suspect it will end, but I'm quite serious in that it's borderline tolerable. Obviously I will end it once I feel it's gone from potentially, to "actually dangerous."
 
Posted by coltman (Member # 21272) on :
 
How much did you start at? - ramping it up gradually helps. I also been taking it 1 hours before bed - helped avoid most sides

I had more sides from it than I had from any other drug so far, but after 2 weeks it kinda became milder. I do not take it right now because of different regimen but I will defintely be back on it - I think its good one if used as a combo (sadly you cant take bactrim...- best abx to combo it with)
 
Posted by METALLlC BLUE (Member # 6628) on :
 
I may be able to take the Bactrim. We're going to re-expore it. We might as well, the risks of other treatments are just as insane at this point. If I react, I simply stop it.

The doctor told me to start at 300 x 2. I expected a strong reaction, but just not so soon. That leads me to think it's hitting another infection and that it absorbs quickly.

I take the Rifampin early. I wake at 8 a.m. and take it, then I take it again at 4 p.m. I do this so I can at least attempt to sleep, but it doesn't seem to be working.

Thanks for your input. I also have insomnia and loss of appetite from Levaquin, so putting them together was pretty much doomed to end in this result. We knew that from the start.
 
Posted by springshowers (Member # 19863) on :
 
Rifampin was my biggest nightmare. I will not even think about trying it again.

I so feel for you..

I could not tolerate it and I TRIED> I stuck in there and NEVER got to feeling better on it or after being on it.

I wish I could give you better hope but based on my experience uhghhhhh

I have had it rough with many meds and though I have been able to try to revisit it later.

LIke I said.. This is the Only drug.. that I would not even try to put in my system ever again.

I do not know what it is about that drug.. but it was severe..

I would not try to endure it at that level of severity. I do not think it is worth the risk.

JMO

I hope you feel better.. Whatever avenue you choose.

Drink a ton of water and try to detox as much as you possibly can.. Baths. Dry Brushing..Enemas.. etc.. DO it all....

When I am in horrible herx mode I have to do those sorts of things a few times a day sometimes.. Not the enemas.. .. too much of that is not a good thing.. but.

As much as you can do or think of is all that ever helped me during major herx episodes..

Or stop or take a break from the medications

Good Luck.. Mike

THinking of you
 
Posted by Lauralyme (Member # 15021) on :
 
Are you taking it with food? An empty stomach increases the effectiveness of rifampin.

Have any charcoal on hand?

If it feels like it is getting too rough can you half the dosage rather than stop it completely?
 
Posted by Hoosiers51 (Member # 15759) on :
 
Is this your first time taking Rifampin? Did this happen last time?

Hope it gets better....
 
Posted by Tracy9 (Member # 7521) on :
 
I'm about to start this. I've been on Bactrim for a whole year and it's definitely time for a change. My bart titers have gone up.

I can't do Levaquin; tendonitis.

You guys are scaring the crap out of me!!!
 
Posted by landerss (Member # 17732) on :
 
Add terrible insomnia and totally screwed up hormones, and I could have written your post! I lasted 12 weeks total on Rifampin, 10 weeks at 300 and 2 weeks at 600, and I had to give up. Was never sure if I was herxing or experiencing bad side effects.

From what I've read, the drug can increase SHBG, thus decreasing the availability of sex hormones. Plus, it's a notoriously difficult med for anyone with any type of porphyria.

I'm 3 weeks off and the nasty headache is slowly subsiding. My hormones are still out of whack, though - ughh!

Good luck with whatever direction you decide to go with this one!
 
Posted by swedish lyme sufferer (Member # 14579) on :
 
Sorry you are suffering!

It is hard to tell if its a herx or not.

I had the exact same experience with rifampin, and I thought I was herxing, but in the end it was all side-effects.

No improvement after I finished and I stayed on in for 5 months.

5 horrible months .....The side-effects are harsh with this drug.

I felt better when the rifampin wnet out of my system.

BEst luck!!
 
Posted by Nicole_Denise (Member # 20620) on :
 
I started Rifampin two months ago, and it was really hard on me too- and I'm only taking 300mg once a day!

I wasn't as sick as you to begin with, so I had more room to get worse, and I used a lot of it! I didn't hit bottom until about the 2 week mark, and didn't start feeling better until 6 weeks in.

Not meaning to get you down- but just I'd keep a very close eye on things, and make sure your doctor knows how you are feeling. You might not react the same way I do, though.

But can you not start at a lower dosage? What does your doctor think of all this?
 
Posted by seekhelp (Member # 15067) on :
 
It drove to the brink of insanity MB. I had to stop it. [Frown]
 
Posted by kday (Member # 22234) on :
 
I will agree with a lot of the people here. It made my brain/body trip out: I felt like I was going to die 24x7 a week or so into it. Had a day with disturbed, confused thinking, anger, rage, and intense anxiety. The next day I ended up in the E.R. the whole day with a body temp of 93 and very confused. I was only on 300 mg at night.

After this incident, I tried to continue taking it a day later, but I thought I was going to lose my brain, so I stopped all my meds. It's been a week or so off, and I am recovering.

To be honest, in my case, I think it was the infection. I've had the same reactions to other meds, just not as intense.

In my case, we think it was probably a combination of encephalopathy and neurotoxicity. Not exactly sure why the body temp dropped so dramatically, but it hasn't happened again. My doc guessed thyroid, but I've read the body can drop it acutely like that for neuroprotection; this makes more sense to me since it occured when my symptoms were the worst, and I am still recovering.

Listen to your body if it doesn't feel safe.
 
Posted by KimDC (Member # 20699) on :
 
My LLMD tends to think that when symptoms are that severe and that soon after beginning a drug, it's side effects and not herxing. Like you said, your herxes come on the 2nd week, not immediately. I'm beginning to think that too many of us tough it out thinking it's herxing, when in fact, we're having serious side effects from one of the abx/the addition of another abx.

I hope you feel better soon!
 
Posted by djf2005 (Member # 11449) on :
 
Mike, cut back to 300 1x day for at least 1-2 weeks.

Its not side effects, rifampin is extremly benign.

I experienced all the same things, but had to VERY slowly advance w/ it.

Him telling you to start w/ 600/day is foolish.

Don't kill yourself needlessly. It is an extremly effective drug and by your reaction Id say you are going to have great benefit from it.

It was one of the major reasons I went into remission last time, but the hell didnt start to pass until month 2-3 which was followed by rapid improvement.

You don't have a lot of options left and by your response I'd say you are definitley infected w/ some type of myco/blo bug.

I believe it will work if you can stick it out.

Also, you can cut the dose back to as little as 50mg by putting the powder in veggie caps which is what I did at one time also.

It is by no means fun and is one hellish ride but try to stick w/ it.

Hang in there.

derek
 
Posted by djf2005 (Member # 11449) on :
 
Also, the people posting on this thread are here because your thread title is "rifampin is killing me".

Say you had titled it "rifampin is helping me alot, then you would have gotten a lot of positive responses.

Just food for thought.

Best

Derek
 
Posted by Stacyb (Member # 13084) on :
 
Mike,

Sorry to hear the Rifampin is hitting you so hard.
You mention GI so you may want to ck your liver
labs IMO. I just re-read your post and you are on Levaquin too so I bet you are hitting Bart big time!

Maybe change the post title to Levaquin and Rifampin herxing so some of the folks that have taken them both
at the same time can reply...
 
Posted by pj1954 (Member # 11722) on :
 
most important thing is to detox while on this abx no matter which method you choose just do it.

rifampin is a wicked herx and if you add levaquin to it even more so mine lasted 25 of the 30 days I was on it.
 
Posted by mrpotto (Member # 15123) on :
 
Sorry to hear Mike but OTOH hopefully it is a wicked herx and you come out the other side feeling much better.

I took Rifampin 3 years ago and at the time my doc prescribed it by itself. As a result it didn't do anything for me.

I have it on my list to re-try in combo with something else.

The healing process for this can be so cruel at time.

Hang in.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Hello again all. When I have herxheimer reactions the same symptoms I'm having now appear, it's just that this drug is amplifying them heavily. I know the insomnia is obviously a side effect, but everything else is pretty standard. The fistula issue is not however, though I have had discomfort somewhat at some points.

If these symptoms don't relent I will have to lower the dose given I need to be able to eat. I'm also having difficulty drinking or doing anything else since the symptoms I'm having are systemic. When I have reactions to an effective medicine, my digestion goes to hell. I get nausea from pretty much anything. Last night I was taking a shower and I felt just like I did before I began treatment back in 2000. I felt like I was going to pass out and felt so sick that my head was spinning. Everything hurts too.

At any rate, while it's certainly killing me, it ultimately "won't" since I'll have time to stop if needed, so don't worry about me in that respect.

I am doing detox, but it's not even remotely touching it. I have to try to drink more water but it's very harsh. My urine isn't only orange and red, but practically brown from being dehydrated. I'll push to drink....

I'm getting a CMP on Friday. I always check most systems when on new meds, so my liver will be checked. My specialist put me on Hepa 2 by Zhang, which is a liver support. I'm also on ALA, NAC, and Milk Thistle, so hopefully the numbers are normal. Last time the numbers were around 300 and 200 respectively, but again we weren't sure what caused it. If the numbers are shot this time, I'll definitely know it was the Rifampin and I'll simply stop. Fortunately the liver heals if you terminate a treatment like this within a safe period (a week generally).

There would be no way for me to endure 2 months, or even 2 weeks at this pace. It's not even a matter of will power, you know? I learned long ago that toughing it out beyond a certain time frame is "harmful" not helpful to the overall process. Like others have said, lowering doses and or stopping and restarting most treatments in pulse cycles are key. Rife treatments usually follow a pattern like this specifically for this reason. To much damage from the herxheimer itself will cause damage that can set back everything.
 
Posted by keltyl (Member # 14050) on :
 
First, the rifampin makes your urine a very dark color, they did tell me that ahead of time.

For a month, I took Rifampin,Malarone,Mino, and Plaquenil all 2x a day. Plus I was doing 2 gr IV rocephin 2x a day, 4 days on and 3 off.

I really began to wonder if they were trying to kill me. Needless to say, my 1st big herx, or maybe I was dying (felt like it).

Also had 0 appetite, anxiety, fast HR (which got really bad at the end). Oh and the insomnia really got bad.
 
Posted by djf2005 (Member # 11449) on :
 
Hang in Mike. I am on AIM if you need to talk.

Derek
 
Posted by Pam08 (Member # 19203) on :
 
I just wanted to respond to someone that said it probably isn't a herx if it happens right away. That isn't not always true. When I first tried Omnicef I had a very horrible reaction within 2-3 days of taking it.

I thought I must have been allergic to the medication or something. BUT my LLMD assured me it was a herx. We did stop the Omincief and did some other meds. Several months later we retried the Omnicef and I was perfectly fine with it. So it actually was a herx that first time and not side effects or an allergy to the med.

So a herx can definitely happen very soon after taking a medication and not just 2 weeks later.

Just wanted to add my experience so that people know it is possible to herx at any time.

I hope you can get through this med ok. It sounds very concerning. I would definitely lower the dose. Hang in there and be very careful!

Take Care!
Pam
 
Posted by Lauralyme (Member # 15021) on :
 
Derek gave you great advice.
I took rifampin 150mg 2X with minocyline 50mg 2X and it was the best drug for me. I didn't have any herxing I just got alot better.

Lowering your dosage sounds like the best. Like you said herxing so incredibly hard is just too stressful on your body.

Hang in there
 
Posted by Cadames62008 (Member # 16275) on :
 
Those were the same meds for me bactrim actually gave me when I was very sick stroke like symptoms.

When I took the rifmantin it was horrible I felt like well death at the time.

But I am doing 95 percent better now so it did help me ALOT
 
Posted by djf2005 (Member # 11449) on :
 
BTW, herxes can often present themselves in hours or less, it does not have to be a specified amount of time such as 3-5 days, etc.

The more sensitive the person and the more compromised their detox pathways are as well as their microbial load are all factors that determine how and when one will react to any given drug.

Since detox does not "appear" to be your issue, i'd say it's hitting something hard.

From my own experience, I herx within minutes to hours of medications, so there is no cut and dry rule for when one might herx.

I know you know this Mike, just clarifying for everyone.

Best

Derek
 
Posted by nefferdun (Member # 20157) on :
 
I am taking it right now with zithro. I built up slowly starting with just the rifampin at 300mg a day, then doing 600mg, then adding the zithro. I can't imagine doing levaquin and rifampin! They both cause me a lot of emotional herxing. A week ago I thought I was mentally ill. It seems like slow progress is being made but my headaches are gone and my hot flashes are subsiding. I would ask about backing off a little bit so you don't over stress yourself.
I also have the insomnia but it is a little better. I take the meds in the morning and can sleep better at night. I have vivid dreams on it. I use the herb corydallis which is incredible for sleep. It is in Zhang's Herbsom but you can buy it by itself online.

You can herx immediately from a drug. I herxed within hours of taking doxy - my first abx.

I hope this is knocking it out for you and you get relief soon.
 
Posted by Nicole_Denise (Member # 20620) on :
 
Just to clarify- I think Rifampin is working for me better than the other things I have tried. it was just tough for the first 6 weeks.

Also- I was wrong. I am on 600 mg, not 300 mg
 
Posted by Toppers (Member # 20083) on :
 
PM me if any of you want to sell your rifampin. It's my favorite drug and I wish I had a stockpile of it going right now.
 
Posted by sixgoofykids (Member # 11141) on :
 
Hey, Metallic, I was the same way when I started Levaquin for bart. Bart herxes were very, very tough, but in the end, it was the first treatment that gave me clarity.

My mind had been foggy and my body weak, but the bart treatment pulled me up quite a bit and I felt the first breakthrough in my treatment.

Mine lasted 6 weeks before I started getting steady, fast improvement. By 12 weeks I was sooooo much better than before the drug and was switched to Rifampin. By that time though, the bart was no longer an issue for me.

Hang in there, you might make some real progress. Epsom salt baths and Vicodin were my lifesavers at that point. That was one of two times during treatment I needed strong painkillers just to be able to tolerate the treatment, not to actually feel good.

Keep in communication with the LLMD .... don't push yourself to a point where you're in danger.
 
Posted by swachsler (Member # 18155) on :
 
rifampin through me into a horrifying collapse that, two years later, i still haven't recovered from. and i was on it A WEEK.

the horrible symptoms started within a couple hours of taking it. every time i took another dose, i felt like i was murdering myself. it was a nightmare.

i went on the full-strength dose right away, which i will never do again on any other drugs. i have learned my lesson, bec i alw herx horribly.

my LFTs shot up at that time, too, so i went off it, and i still don't know if it was the mother of all herxes or if it was really poisoning me.

ask ur doc if u can cut back ur dose! rifampin is hard core!!!

-sharon
 
Posted by METALLlC BLUE (Member # 6628) on :
 
It's now 2 a.m. the 5th day of treatment - 24 hours after having written the first post. The Insomnia is brutal, but it appears many of the previous symptoms from the herxheimer reaction have alleviated and I am back to 30% function. We shall see if I remain here tomorrow. I am going to get my blood work done tomorrow or the next day. Side effects of that nature would not simply come and go. I did drink more water and continue the detoxification the doctor had me on. I didn't do much though, I tried to get at least 16 oz in, which is pitiful, but when you're as sick as I was, that's like consuming niagra falls.

If a herxheimer reaction can take me down that strongly, it would probably kill most people, so yeah I definitely don't recommend people start at full dose or "push through" for too long. For me, I can tolerate severe abuse (no food or little fluid) and intense pain and symptoms for no more than 1-2 weeks. Beyond that it would have been obvious that slowing down would be crucial. There is a line. You do have to push hard, and it may feel unbearable for a period, but yet there also has to be a smart "cut off" where you realize the risk to benefit is over the edge.

Hopefully my liver enzymes come back normal when I test. If I had such a potent response, I suspect with continued use I may start seeing improvements. I have to start LDN and Lariam in the next few weeks. I'll cross those bridges once I know where I stand with this Rifampin. If the Lariam works like the Malarone, Babesia may not stand a chance and will go on it's merry way straight to hell.

It's amazing to think I went from pushing hundreds of pounds on a bench press to barely being able to lift a cup to my mouth to drink, and yet I did it all while sick the entire time since childhood. It's as though it just slowly eroded my mental and physical resources. It is an insidious disease, truly terrifying, destructive and corrosive. It truly can break the strongest will and destroy lives, and literally take lives.
 
Posted by springshowers (Member # 19863) on :
 
Hi Mike
Glad most of it has passed for you. .I hope it does end up helping you.

I was curious how you formulated that you are at 30 percent.

After years I am having trouble putting numbers on my current status because I think I forgot what it is like to be normal and i start comparing to my good days instead.. which is not accurate

I usually use numbers that give my doctor an idea by using the number of hours up out of my bed a day as opposed to a normal person who is up 16 hours and sleeps 8 hours.

Then I give a 1 to 10 rating on pain.
Then I give a 1 to 10 rating on fatigue.

And lastly I try to explain that being out of bed is step one and step to is what can i do when I am up out of bed. Meaning how much energy I have plus do I get burnt out and have to stop and rest after 2 minutes of vacuuming..? Or can i actually exert energy without feeling like dying..

Not sure what you call that.. but I try to explain to the doctor that just because I got to his office does not mean I will not get home and pass out for the rest of the day..

It is hard for the doctor to get a good view and idea when you are sitting on their table there and that is most likey looking our best? Kinda?

I mean I sometimes take a few hours to prepare to get to the doc office and I never set an appt prior to noon.. and i get dressed and try to comb my hair etc..

So anyway..

If your at 30 percent.. does that mean you are up out of your bed like 5 hours or so a day? Or?

How do you figure that number out?? That could help me.. in how I figure this out..

Thanks.
 
Posted by smiles132002 (Member # 7949) on :
 
i was the same way when i first started rifamphin. I felt like i was dying, couldn't think etc. You might want to take a look at your electrolites. Levaquin and rifamphin have a strange side effect which can alter the absorbtion of electrolites. You because dehydrated and then delusional.

I always use the rule of thumb of 4 days. If I feel as bad or worse on the 4th day I stop abx. Rifamphin and levaquin stay in our system for up to 6 weeks. Rifamphin kills all our red blood cells and it takes 4 months to do a complete reformation red blood cells but a year on rifamphin to really completely turn over all the infected cells. So going off it for a few days really won't hurt you.

Also it's super tough on the liver so make sure you're doing regular blood work. Rifamphin is not so fun but it does it easy. Some people also experience change in taste (ie food) which is part of the reason they have no appetite. For me everything tasted like salt.

Babesia can give you the illusion of fullness maybe bart can too but I know bart can hide in your gut so I experienced severe stomach pain and nausea.

Alinia,Rifamphin, and a lyme med like mino or doxy is a phenomial combo if you can tolerate it. I had a lot of improvement with that combo over 4 months and a lot of brain improvement after 3 months.

stick with it if u can because the benefits are really remarkable.
 
Posted by smiles132002 (Member # 7949) on :
 
my writing is atrocious...i have been off meds for 11 days and even I have a hard time reading the post i just wrote-but hopefully you'll get the jist.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Spring, the percentile concept is based on primitive outlines. I've described them to my physicians -- who also were very shocked at my seemingly simplistic "subjective" numbers.

They are even more surprised to realize they aren't subjective once explained.

0% is death

5% is dependence on hospital staff in the ICU and requires the patient be on machines to survive, including IV feeding, fluids etc, potential surgery and comprehensive testing. Loss of consciousness is a hallmark as a direct result of the infection. Fevers of excess may be present, but the condition is acute and dangerous.

10% Patient is still conscious but incapable of meeting minimal care, suffering is unbearable and medication intervention for pain, and other care is needed. The patient may have difficulty communicating by voice. At 10% function the patient does not require ICU care, but is hospitalized and usually requires IV care and monitoring to ensure basic needs are met to help them avoid sliding further down to 5% or death.

15%: Patient can perform one or a few minimal tasks, including lifting a cup to sip, eating small bites of sauce or broth. A monitor should be available to encourage or help if needed, since crippling fatigue or other neurological symptoms may impair them from "easily" accomplishing these minimal feats. Pain intervention is necessary, and hospitalization to monitor progress.

20%: Patient must be hospitalized, as food and fluid intake are too low for the patient to survive long without immediate medical intervention. Patient is conscientious of their inability, alert and concerned, but none the less, knows they must be hospitalized. Cognitive deficits and confusion, anxiety and pain are present. Patient will likely need a wheelchair

25%" Symptoms are intolerable without medication intervention, however while it may be debilitating the patient can generally eat minimal solid or mixed foods and drink a couple cups of water per day, they are not self sufficient and require a home supporter to cook, help them ambulate, and cloth them and bath them. A cane or walker -- or using the walls/railings to stay upright are needed. Patient may not be able to get up to take their meds alone, or be able to organize them. Monitoring is needed by a support person.

30%: Symptoms are tolerable but unpleasant. Patient can eat and drink enough to sustain self, fundamental survival is not threatened at this point. Emotional and physical symptoms are not viewed as separate. If suicidal feelings grow more intense, the percentage of function can significantly decline with that symptom alone. 30% is marked by declines in psychiatric care, including deeper depressions, burnout, exhaustion and other psychological conflicts that result from being between the world of entirely crippled, vs functional. 35% is also marked by frustration. A limbo of sorts. Surviving but not thriving. Suffering is tolerable, yet complacency and isolation require visits from family, friends or other supports within the home or via some other source, i.e. phone, internet etc.

35% Individual can generally eat a few meals per day, and meet the normal values of 64oz, and get at least 3-4 hours of "tolerable" sleep. They can walk, talk, and move around alone without a walker within a limited space. Usually homebound except on occasions when they must push to meet serious obligations such as seeing a doctor. The patient can do some exercise, anywhere from 15-60 mins of mild to moderate activity, depending on the individual activity chosen.

40%: No longer homebound. Fundamental survival is not threatened, social activity increases, cognitive skills are reasonable enough for others to assume you are in top health. Physically, appearance improves, pain decreases, and exercise can include walking outside, or even light short distance jogging, but the individuals tolerance for activity must be built to achieve it.

45%: Individual can endure social outings like concerts, even part time work, if they are stable at 45%, but the work must be flexible. The individual may start taking a class, or even carry on a new relationship. Normalization of cultural lifestyle begins to return, such as reading, going to movies, and mood and behavior are reasonably stablized.

50%: At this point, you're able to function like the average person who is having an "off" day. The average person can work full time on an off day, and so could a Lyme patient who stayed consistently at 50% function. They won't be the best worker, but they won't be the worst and they'll be able to tolerate it without feeling they're killing themselves.

55-75% are marked by subtle changes in improvements in abilities. As neurological changes and pain decrease, biological chemistry is restored, so sleep is long term, deep, restful, and the ability to perform mathematics, visual activity, sports, and full time schooling with also working part time -- are all accessible. There is less need to be hyper vigilant about "planning." Plans can be made knowing that deep deviations won't be likely.

75% and higher are marked by typical lifestyle of the average individual. Most healthy human beings without infection live day to day between 95 and 75% depending on environmental activity, social relationships, meeting goals and engaging oneself in purposeful and meaningful living.

100% is ideal, which is reached occasionally by everyone -- it is usually something we carefully prepare for, with discipline, such as getting deep sleep, preparing in advance for testing or physical activity like sports, or other use of skill sets. The average person is not disciplined and highly goal oriented in a fashion that requires feeling 100%, thus most people don't eat perfectly, don't sleep as much as would be optimal, and certainly they don't exercise as often as would be encouraged. Those who do these things, would see 100% function more often than the average.

Hope this provides you a run down of "objective" indications of functionality. I basically wrote out a list like this for my physician and I had them read it. I said "Ok, now whenever I say a percentage, from this point onward you will simply know what I am factually capable or incapable, and what my needs are. They found it quite useful. For them it was a bit like the 1-10 scale except comprehensive, identifying literal "function vs. non-functional" internal and external activity of the individual.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Writing down a "function" assessment that you give to every doctor you see, can help them understand exactly where you are and aren't in general. For more specific details, I write a summary report as well as a list of the symptoms. The symptoms are then broken down into a number of groups. I include a small legend next to the the list so the reader understands what each "group" means.

Example:

Fatigue: Moderate + 1

Legend:

None: No symptom
Low: Mild and tolerable
Moderate: Tolerable, with intermittent intolerance
High: Intolerable without intervention
Severe: Intolerable with intervention

+1 means that since the last appointment, the symptom has moved from low (at the last appointment) to now moderate, such as in the above example. The number can be -1 as well, indicating that symptoms improved since the last appt, meaning instead of a symptom being moderate, it is now low. -2 and +2 are marked by the same trend. A step up two rungs or down. ie. -2 might mean a symptom was severe during the last appointment, but is now neither severe, nor high, and has thus become "moderate."

Since it's generally graphed, it's very easy to read and comprehend. Describing it with words can make it a bit harder to comprehend at first.

Bottomline, I always prepare for appointments and make sure the physician knows exactly where I stand, and by being prepared I don't have to actually explain much at all during the appointment since everything is written in a condensed report.
 
Posted by Rumigirl (Member # 15091) on :
 
MB,

Your system of sx tracking sounds fabulous! And I'm amazed by your scoring system of percentages of function. According to your system, I am way less functional in percentages than I have been giving the dr.

Could you post or PM me your system (aside from the percentages you listed); it could be REALLY helpful. I prepare an incredible amount of written material before each dr's visit, but your system sounds even better. Thank you!

In terms of your sxs from the Rifampin and levaquin, well, as someone else said, that's a double heavy duty whammy on Bart---not to mention other infections. So the Bart herxes will be awful, I'm sure. ANd, of course, insomnia is one of them.
 
Posted by Munch (Member # 11323) on :
 
I agree with Toppers -- I just LOVE Rifampin. It is my very most favorite of all of the Abx. I got a small herx then feel better than I've ever felt in years.

My brother on the other hand just HATES it with a passion. I think it just goes to show we are all different and have different strains of crud in our infectious soup.

Right now, I'm on 300 mg 2x a day of Rifampin but started out with 150 mg 2x and 1-2 Gr of IM Claforan + Cipro and Doxy. I have sarcoidosis, Bb, Babs, CPN, EBV, candida, mycoplasma pneumonia, and Bart and/or a BLO.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Rumi: [email protected]

I'll send you a summary report that I give my physician. You can do what you like with it. As far as the percentage report, you can use the one above. Just rewrite it based on common sense if there are individual things that are more of an issue for you. For example, pain alone can debilitate someone into begin bedridden and homebound even though they can walk, talk, and even think clearly.

If you're got crippling pain that leaves you bedridden, but you have no other symptoms, you're functioning at about 25-30%. Think about it, with that much pain, even if you could do the other activities, the pain alone would halt you in your tracks from attempting to.
 
Posted by springshowers (Member # 19863) on :
 
MB I think another good point is that we do this and be accurate..

A few years back i was making progress and getting better and.... I was nervous that when i say I am getting better.. then.. my doc would smile and when i left I would think.. Does he think i am Better better?? Like normal?

I did not give him something to go by... so I started to worry as I would read his reports that would just say. The patient is doing much better.

That could be interpreted in so many ways and in a way that could be very inaccurate..

So i agree with the rating systems...

I need to get better at taking them to the doctors office...

But. if your the same or getting worse.. then I do not worry so much.. ..

I should get more consistent with it.

One time I took a general rating.. a couple years ago.. and each year was a tiny improvement... and it was from 2000 to 2007. The doctor wrote all about how I had been making so much progress and doing so well.. But the increments were so small and I was really only sommewhat better and still disabled in relation to being able to work.. etc.

That also did not work out too well .. in my opinion.

So got to be careful if your on SSDI on how you portray yourself and be very clear and realistic.

I keep a notation on any reports on the bottom that states my abilities to keep house, personal care, and work.

Again if your on SSDI .. stating your abilities to do things is very important...
 


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