HealingWell
Search Close Search
☰

ups and downs during treatment

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/31/2014 9:20 PM (GMT 0)
I am trying to have a positive attitude that I will get better and that this will pass. But there is a part of me that fears it will not pass. I hope it will. It is such slow progress. If anything, since starting treatment I feel many symptoms more than before. I mean I do feel generally better than before, absolutely. But I still feel some symptoms so much even 45 days into treatment and it can be discouraging.

I almost did my first day off of rifampin today, as the doc suggested. But at the last minute- a 1/2 hour ago, I felt my ear symptoms returning and got nervous and took the rifampin. Now I feel the symptoms even more so and finally see that the doc is probably right., it would be better for my body to take a break for a few days. SO I will take the next three days off.

My ear symptoms had been much better. It is so frustrating to think a symptom is gone and then it returns. Makes me discouraged. Especially because I felt the ear symptoms returning today even before I took the rifampin.

I am trying to tell myself I will get better. I had lyme about 7 months before treating and many symptoms did not get too bad. But

I hear so few stories of recovery and so many of discouragement.

Can anyone offer me some encouragement that I will get better?

Right now I am just sitting here with the clogged pressure slightly hurting ear thing that I have not felt for a while. ugh.

 

Posted 5/31/2014 9:50 PM (GMT 0)
I am still undiagnosed, so I can't speak from experience.

But, from what I've read - most people do get better with time. Those that don't - maybe they've given up, or maybe run out of the funds needed to finance treatment...
Many people have Lyme for years and you've been less than a year before treatment...so i think you have a very good chance to get better.

Hang in there!!
Posted 5/31/2014 9:52 PM (GMT 0)
Thank you. Do most people really get better? I look on all the forums and fb pages and people are asking for success stories and a few trickle in but not many.

 

Posted 5/31/2014 9:56 PM (GMT 0)
Don't be discouraged. Most symptoms are the result of toxins in your system. If you kill bacteria the symptoms will return because now the level of toxins in your body is higher. The key to this is not to kill more than you can detox. I do colonics 2x week and green coffee enemas on days I don't have a colonic. I take Cholestyramine for mold but I find it's a really good toxin binder. I also take Essential Pro liposomal glutathione 4-16 caps per day depending on how toxic I am. I do FIR sauna 5x per week and Epsom salt baths, I also jump on my rebounder. So returned symptoms=increased toxin level=you are killing the critters=must detox. Good luck!
Posted 5/31/2014 10:03 PM (GMT 0)
Thank you for the insight. Yeah I will take the three days off rifampin like my doc suggested, but I am still on minocycline and now malarone every day.

I take liposimal gluthion ( spelling may be wrong) every day, baths every day, drink as much water as I can and try to exercise ( did some today but don't do enough) and I rest a lot. I also take alka seltzer gold. I don't think I am over the anxiety enough yet to sit in a sauna right now. There is a place near me I can pay to use their sauna if I get the courage up.

We are moving in 2 weeks to a brand newly built house- with no bad air quality or anything. Currently living in a house that is kind of musty and has old wall to wall carpet that is musty so that isn't great- but our new house is wood floors and all new so that will be healthier.

Not sure what else I can do to detox but it is good to remember that I am klling a lot of bacteria and need to give it enough chance to detox.I just don't quite know how to detox more other than adding saunas. I don't think I need enemas right now. I have no constipation or anything.

These two little bump things on my skin today are new and I don't like them. I know my body is overrun with toxins, I hate it. I just don't quite know what to do to detox more even though there have been suggestions, other than what I do what can I do to do it more?

Posted 5/31/2014 10:09 PM (GMT 0)
I hear of success stories on this forum - some complete, and some not complete, but certainly better so they can function in life.

I do believe that we are stronger than the critters...and we just need the right mix of abx and natural herbs.

So, you're 45 days into treatment? That's not really a long time in my eyes. Especially after being sick for 7 months.
Posted 5/31/2014 10:17 PM (GMT 0)
Colonics and enemas have been essential in me turning a corner towards getting better. They are not about constipation but about removing toxins out of your gut before they get reabsorbed. In other words, your body excretes toxins into your colon, on their way down they are the first thing that gets reabsorbed. In order to prevent that you do a colonic. I encourage you to try it, they make a huge difference. It is the number 1 thing I have ever done for my health and I will continue to do them after I am well. I have learned so much about my body since I started doing them! The colonic therapist I see is extremely knowledgeable and your colon health is absolutely related to the health of the rest of your body. You cannot have good health if you do not have a healthy colon. Someone else posted about doing enemas 3x day. That is also done in Gerson therapy for cancer and I guess I know why they do it. So I really encourage you to give it a try, they made a world of a difference in my recovery.
Posted 5/31/2014 10:51 PM (GMT 0)
If it makes you feel better and want some statistics there was a survey for statistical purposes saying 10% of people that got chronic Lyme disease are in complete remission with no symptoms and finished with treatment. So that 1 out of every 10 people that got it. But that is from late stage or chronic Lyme which is defined as going 1 year with symptoms and no treatment. Apparently if you treat it within a month and it is just a localized infection it is much easier to cure. Then there is the grey area that is early disseminated infection and initiating treatment 1 month to 1 year after infection, the infection did disseminate but treatment was initiated early and they treated to 2 months symptom free. Most of these people won't relapse and successfully eradicate the germ but some will.

The reason why this goes chronic if it not treated as soon as possible is they start building biofilm areas in protective niches of the body. When they start doing that they are basically creating safe haven zones that just spawn new spirochetes when the coast is clear.

Also another interesting bit of information is that 1 out of 2 people with Lyme disease have the symptoms that we have. Bizarre isn't it? So half of people that get exposed to Borrelia have no symptoms and their immune system holds it off and keeps it in check.

Bartonella and babesia are apparently also difficult to treat and can become persistant infections, but most people are able to completely get rid of these 2 infections completely with no risk of relapse.

Also there is currently no way to know for sure if you are truly Lyme free. You might not have any symptoms but still have a few germs in you. They say borrelia is one of the most highly evolved bacterias on the planet. Very very sneaky bacteria and it had so many tricks it plays with.
Posted 6/1/2014 1:12 AM (GMT 0)
If I am trying to detox do I take a few days or even a day off of my main antibiotics?
Posted 6/1/2014 1:19 AM (GMT 0)
I still don't really know if I shold expect to get really better or not. At this stage of treatment  I just don't know if I shold expect to get better or not. IT seems like a really long time to be on a lot of antibiotics and still having syptoms. And the herxing thing is confusing too. Since I am still 12 days into rifampin and right now experiencing ear pressure and aches like I did just before and at the beginning of treatment.

It seems like most illnesses there is a steady progression of getting better. And that 50 days of antibiotics would show significant improvement.

I wonder if what I am doing is even helping me? This is a frustrating and confusing place to be. I want people to be saying- yes, most people get better, and it just takes a while.

Even 7 months in I did not have that many symptoms.

At 7 months I had anxiety and ear issues.

The first 5 months or so I didn't have symptoms other than occasional anxiety stuff, or gradual increase in anxiety.

So I wasn't really sick for seven months. I didn't even know for sure if I had lyme, in fact I on;y thought I might a little. Then I got the igenex test to check and remember the weeks waiting for it, saying I was pretty sure I didn't have it.

Then I got the positive test, and started treatment and many things got much worse.

So I am not sure what I am supposed to think.I like my doctor and he seems to know his stuff, so I have to have some faith. I know I have to treat it since I have it but why is it that the treatment is making me feel so horrible? And how am I supposed to believe that this will get me better, when it feels like I am just toxifying my body and I still have ear issues now 50 days or however many in, just as strong as before?

I hope that taking three days off rifampin tomorrow will give some relief of symmptoms. I am so discouraged and afraid of what is happening to me, and feeling like my symptoms are worse in many ways than they were even before treatment.

And still not finding too many success stories from people. So I am discouraged.

 

Posted 6/1/2014 2:07 AM (GMT 0)
I am still feeling discouraged. I feel like I need more time talking with my doctor. HE is really expensive. My first visit was long and pretty thorough My second was 45 minutes which felt pretty good. This last one was 30 minutes and I felt very rushed. I feel that I want to ask all my questions, ask about every alternative of everything- and know exactly where I stand. Because I need that for my mental state to feel that I am doing the right thing. I may have to book another appointment with him just to talk aobut everything.He books out a while though. but I just feel so unsure of the treatment. Right now I am just on all these antibiotics and antimalarials. I guess it is up to me to exercise more etcetera. I just wonder if these long term antibiotics and things are even working. I have to have faith in the treatment but until I talk with the doctor more I am feeling a lot of doubt.
Posted 6/1/2014 3:25 AM (GMT 0)
Kate,
Ask your doctor for a few success stories. I'm sure he can tell you some. My doctor said not to freak out too much. Recovery is possible. I'm sure lyme doctors wouldn't want to be treating patients if there was no hope to get any of them well..
Posted 6/1/2014 4:22 AM (GMT 0)
Sometimes I wonder how much of my syptoms I am exaggerating -even to myself? I talked with my parents tonight and they were like- we know tons of ppl who had lyme and none that we know had the panic and anxiety like you have. They don't understand it. And especially since I don't have many other symptoms.

ugh

I am just confused about what the heck is going on with me. I am so glad I don't have tons of symptoms- I just wonder if I need to push myself more to get past the panic and anxiety? I don't have it every day or all day  mean= just lately when I go out.

also, this annoying house we ar eliving in for two more weeks ( been here 2.5 years) has mildew type issues- we can't see anything but it smells musty- I hate it. I think I will improve a lot when we move into a new clean house.

But I am just so confused about how I feel- how much of it is me being whimpy, how much is me reacting to the antibiotics, nd how much is the infection. such a weird experience. I know ppl who had lyme to he point where their knee was swollen and so sore- they had to go on iv antibiotics, and still had no mental issues like I do.

Plus, I haven't had much panic in the last couple of days- I wonder how much of it is just my far of having a panic attack rather than the actual panic attack? so confusing.

Posted 6/1/2014 5:08 AM (GMT 0)
Kate, for 40 years I had no idea what a panic attack actually was ...... when I took 2 weeks of doxycycline, and stopped - all hell broke loose ... I learned, the hard way, what a "panic attack" was ...

Of course, you must keep in mind that you WILL get well and stay positive ... but bartonella will cause panic and terrible anxiety ( with no trigger or origin ) even in the most laid-back person ...

I have never had any joint issues, arthritic pain or fatigue ... I have bad burning pain from my ear/jaw and neck, foot and shin and leg pain, red lines red streaks red dots - and bad irritability and panic ... I can't even watch a movie, although it is getting much better ( and this coming from someone who could be a couch potato thru 3 movies in a row )

It is the bartonella, NOT you !
Posted 6/1/2014 11:52 AM (GMT 0)
thank you-I just feel that I need to change my attitude to not be so scared and to be more courageous for my family
✚ New Topic ✚ Reply