posted
As people get treated for Lyme and its co-infections, what is the typical progression for getting better?
Do some symptoms diminish more quickly than others?
Do some symptoms take longer to treat?
Has anyone ever outlined the stages you go through from beginning to end while in treatment?
Posts: 9 | From Illinois | Registered: Jun 2011
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posted
Everyone is different and sometimes when you start to get better it is so subtle you don't notice you have had a few good hours. We are all so programmed to feel lousy, tired and painful because we do all the time that sometimes when you start feeling better, you can miss it if it is just for a short time.
What you want is slow steady progress. Expect to hit some bumps in the road, as that is part of the progression to getting better.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Faithful is 100% right. It's completely different for every one of us. Some symptoms ease up and new ones appear along the road of treatment.
I once referenced feeling like it's a disease the plays "cat and mouse". My symptoms began to ease up after 3 months of abx, then I herxed, severly.
I still haven't gotten anywhere near that place again of feeling decent. I've since developed new symptoms and added to my line up of abx and supplements.
Detoxing is also important and you'll find so much useful info. on this site to help you along.
Hope you feel better soon!
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In general, the newest symptoms will leave first and the oldest symptoms will leave last.
Also, each time you start a new med, you will feel lousy as the new med is killing germs that were not killed before.
After being on a medication combination for a while, you will generally improve. When you stop improving, the doctor will then likely change your medication combo, go after a new disease, etc.
Each time the meds are changed, you will get sick again. So, the way it goes, generally, is that you feel lousy when you first start treatment (initial herxheimer reaction) and you then see some improvements. Then, you change meds and feel lousy all over again. Then see some improvements. So, it is one step back, two forward, and then stepping back each time meds are changed.
If your doctor goes after one disease at a time, you will notice the untreated diseases getting worse. If your doctor goes after 2 or 3 diseases at a time, it can be rough due to all the killing, but you won't notice the other diseases coming to the foreground.
When you target a disease, the symptoms of that disease get worse at first (due to the killing of the germs). Some diseases flare at regular intervals, and some people notice this. For example, when treating lyme, I could readily see a 28 day flare cycle. I would mark on my calendar when a flare started and count forward 28 days and predict the next "bad day." That gives you a heads up not to plan anything on or around that day. Also, when that date comes and you feel lousy, you know why, and that is a BIG help psychologically. Otherwise, people can panic and think they are backsliding/getting worse, the disease is progressing, etc. (You can get new symptoms during flares and the symptoms you have get very much worse.)
When treating babesiosis, I had a very prominent 7 day cycle. Horrendous sickness every 7 days. Each of these flares lasted 48 hours. So, 2 really sick days each week. If you keep track of these cycles and report them to your lyme doc, treatment can be adjusted to take advantage of the flares. In my case, artemesinin was added on the days of the flares and that reduced the flares to practically nothing.
If you are getting good treatment and can detoxify your body along the way, you should make steady progress when looked at overall. If you cannot detoxify (get rid of all of the dead germs in your body), you will feel worse and worse as the treatment progresses.
You have to have a doctor who can figure out what is going on if the patient continues to get worse.
As long as you don't have complications like inability to detoxify, need to stop meds for high liver enzymes, etc. you can continue to make progress. The thing is, you usually forget about the symptoms that have left you as soon as they leave. Your long-standing major symptoms continue to plague you the longest, and you keep looking for relief of these. That takes a long time and happens very slowly.
Progress in general is slow. This is a marathon and not a sprint. You notice some times of feeling better along the way, and these times give you hope that there is light at the end of the tunnel.
But, it all depends on having a top notch doctor who knows how to diagnose and treat you for all diseases. Once sick with lyme for at least a year, you are dealing with more than one disease. You may have 3 diseases, or 5, or more. You won't feel better until every disease you have is addressed.
Dr. H likes to say that if a person comes into the doc's office with 13 nails in his foot and the doctor takes out 3, you can't expect the person to feel better.
Another general rule is the longer you are sick with these diseases before treatment is started, the longer it will take for you to feel better. I was sick for at least 10 years (the first 5 years episodically) before beginning treatment. I got lousy treatment for 2 years and then great treatment for 1 year and I was finished.
That was 8 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
If sick less than a year, you can expect a much faster recovery as your immune system has not yet been compromised by these diseases. They work like AIDS in that regard.
The best way to help yourself is to study the Burrascano Guidelines and comply with all of the requirements you will see in that document. It is here:
antibiotic combinations supplements diet exercise (weight lifting every other day for an hour)
In my experience, all 4 prongs are needed for a recovery. Those doctors who follow Burrascano tell their patients this. The exercise requirement is a MUST if you are to get your immune system back to normal and so recover and not relapse from these diseases when you stop treatment.
It took 6 months of treatment before I noticed any improvment at all in the horrendous fatigue. You have to have a mindset that will continue on and get through and not give up.
If you stop treatment before the diseases are gone, they will all just continue to progress.
The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. Lots of doctors treat lyme disease, but only a few know enough to get rid of it for a person. You have to find one of those few.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
When I first started getting treatment I thought that all of the symptoms would just diminish over time. Then over the past few months I have developed new symptoms and it really made me afraid that my body was being broken down from all of the antibiotics and I just mentally started to bottom out. Reading your comments about treatment and knowing things can get worse on the road to getting better is really helpful information.
Thank you!
Posts: 9 | From Illinois | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I was getting inadequate lyme treatment, I developed a new, horrendous symptom--trigeminal neuralgia. It feels like your face is being electrocuted. These attacks are unbearable.
I went to hear Burrascano speak, and I submitted a question on my case. The question was, "What do you think of a patient on high dose antibiotics who develops trigeminal neuralgia?"
His answer was, "If the therapy is inadequate, the disease will continue to progress."
That's how I found out that my doctor of 2 years was giving me inadequate lyme treatment. He had me on only one antibiotic (amoxicillin with probinecid) the entire 2 years. That was inadequate treatment.
After Burrascano's answer, I left that doctor and went to a doc who followed the Burrascano protocol. He put me on 2 antibiotics at a time for lyme, and I was rid of lyme in a few months (he added flagyl to the amoxi). He also tested me for the coinfections and began treating me for all that I had (babesiosis and bartonella).
So, the message is: study the Burrascano Guidelines and determine whether of not your treatment is proper. If it is inadequate, your diseases will continue to progress.
If your treatment lines up with Burrascano, then you can expect to experience what I wrote above.
When it comes to lyme disease, an educated patient is a must, as you can see from my story. That second lyme doc of mine (2 years on one med) told me it looked like I was just going to have to be on meds for the rest of my life! I knew his treatment didn't line up with Burrascano, and I saw in Burrascano many other things he didn't know and wasn't doing. That's why I changed doctors.
I strongly suggest you STUDY this document. It will tell you what I have stated above and lots, lots more. It will give you an education on this disease.
To read about the lyme cycles, just type in "cycle" in the "Find" box while you have the document on the screen.
You can search for any word this way. Any med, any symptom ("twitching"), etc. Answer all your own questions that way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Fatigue is the last symptom for me. I had pretty severe neuro lyme, babesia, myocplasma, and HHV6.
I would say I hover around 90% and have plateaued there.
I have an ILADS doc, but he may soon close his practice. Ugh! I've been to 3 LLMD's and he was the one that got me the farthest.
I'm trying to avoid sugar which may be contributing to candida which may be making me fatigued. That is my only bad habit. I take walks almost daily. I intend to work out with small weights for my upper body as TF suggested. Maybe, I'll work up to 100% healthy.
Oh, did I mention 6 years ago I was on disability and bedridden?
Posts: 1954 | From Illinois | Registered: Aug 2007
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