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Trying to figure this disease out in the long run

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Posted 4/12/2014 4:04 AM (GMT 0)
So I'm trying to figure this disease out in the long run... Unfortunately I just don't feel good tonight. My whole family has met at a big birthday and I realized I'm left all alone with this illness at home. I just don't have the energy to want to go out. I feel like I caught some kind of permanent life long disease kind of like HIV or Hepatitis C but I know I shouldn't make comparisons and that's a bad way of looking at it. Oddly this disease doesn't have any stigma attached to it and is relatively unknown to most people around where I live. But yet I keep it generally a secret in my life anyways. I'm really only slightly getting better each day but the progress is so slow. I kind of feel the ill effects on multiple levels not just the symptoms anymore but the way it's affected my personality and how it psychologically affected me. I realize this illness is much more complicated to treat than many others and I wonder how long will I be treating this for?

At the same time I'm kind of still in disbelief that this happened. The whole situation just seems unbelievable. That is a good word for it, unbelievable. So I am just trying to figure out how to cope and deal with it. Any suggestions?

Also is anyone able to change my perspective that this disease isn't chronic and can be cured? Success stories? Are people in remission just like whatever and having minimal symptoms or are they truly in remission and not getting any symptoms? I still have a hard time understanding the chronic ness of this illness and am trying to believe I can be cured. I guess I can live with it if I can maintain myself free of symptoms.
Posted 4/12/2014 12:02 PM (GMT 0)
You are right, this disease demands a complete re-assessment of your life and perspective. Continually, really.

I can't tell you what the future holds for you in terms of the this disease, but I can tell you that your frame of mind makes all the difference.

Over the years I have been fighting this I have been through cycles of being overwhelmed and then gathering myself and pushing forward to a better place. When I look back, I have made incredible progress and am so much better than I was.

But the journey itself has been a life-altering experience. I have been changed by it and have gained a truly different perspective. I guess I have accepted and value what this illness has taught me.

There is no reason for you not to have hope that you will get better. My LLMD is intent on treating me until I regain full health. It has been a long, slow road with some major setbacks and brief shining glimpses of how well I could feel when I am back to health.

I used to be super anxious to get off of treatment and even just up and stopped at one point (my husband and it seemed everybody thought I should stop treatment). I fell so hard and so fast, I was back on in a matter of weeks. As I started to improve again, my perspective changed and I feel now that if I have to be treated for the rest of my life, so be it, as long as I can do the things I want to do physically and my mind is clear.

Mostly, I have made the best progress when I have pulled myself up by my boot straps, resolved to fight this and gone about the business of getting better like I was saving someone's life. Which I was, my own!

Right now, I am functioning better than a lot of people who don't have a disease to impede them. I'm still swallowing a handful of pills a day, have some pretty horrific nights and have to rest in between doing things, but I am doing things. My mind is quiet and I have been able to rebuild all my cognitive function, as far as I can tell!

I believe you can back to good health, but it is more important that you believe it. Take stock of the improvements you have made, look for more ways to make yourself feel better. Make sure you have removed the things from your life that don't make you feel well or cause stress.

It is good to avoid vexatious things like big social gatherings, but don't isolate yourself. It is a balance between being kind to yourself and nudging yourself on towards improvement.

I guess what I am saying is, gather your hope, your strength and fight but realize that this hand that life has dealt you is an opportunity to learn and grow.

I wish you well!!
Posted 4/12/2014 12:51 PM (GMT 0)
Most days I feel like a walking zombie. Lyme has robbed me of my sleep, eating, personality and energy. I just started treatment and I haven't had a good day yet. My insomnia has just returned with a vengeance. To think I was completely normal in November.

But I have had a few good moments so I hope to be 100 percent one day and I think that is what we can hope for. My mom was struggling believing that lyme was anything more than taking a round of antibiotics.

She told my aunt that I was sick with lyme. My aunt responded that her friend had lyme and she did recover. But it took a long, long time. I think that is the case for most people.

It sounds like you have improved tremendously in 5 months. You are getting there.
Posted 4/12/2014 4:27 PM (GMT 0)
I feel close to how I was before. I was laying in bed this morning for a good 2 hours just being lazy on my Saturday morning. I would get about 1 symptom every 5 minutes in a different place of my body. I didn't take any medications this morning.

I would get the odd muscle spasm here and there. The odd twitch, I got a powerful twitch that moved my whole left arm like a good 8 inches. Then I got the brain vibration sensation of summing vibrating in pulses in my brain, high frequency then the frequency died down, I was getting slight tingles in my face. Just very mild slight random symptoms in different random parts of my body. But nothing painful.

My left knee doesn't hurt but it feels twisted.

It is strange, it is like I am feeling the disease from a non-medication perspective. I am not really burning, sore or anything. But I just have these odd slight mild symptoms.

I just think it is the feeling of the bacteria inside of me. I still have a hard time believing this illness. I have been taking antibiotics for such a long period of time it seems.

Well I'm going to get up now, have breakfast and take my medications.
Posted 4/12/2014 10:54 PM (GMT 0)
I think this is an important topic. I want to give some thought before adding to the thread. Hope I don't forget. Been a rough week or two so don't want that to color my response.
Posted 4/13/2014 1:41 AM (GMT 0)
I 100% relate to everything you're saying and have thought all the same thoughts. 2 years and I've minimally improved... I'm still in shock that I'm fighting this and how little those around me understand. I really don't like being around people anymore... I don't even feel like talking to my kids much of the time. That's what kills me the most, that my kids are going to grow up not experiencing the real me. I used to be so full of life and try to make every day fun for them. Now I'm constantly grumpy and worn out and want to be left alone. My life has changed so much. A lot of people have walked out of my life... I'm sorry I don't have encouraging things to say, but if it helps any to have someone understand how you think and feel, I certainly do. I was hoping to be pretty well by now but in the back of my mind, based on everything I was reading, I knew this would be a long battle. At this point, I can't even imagine having a day without being covered in pain.

It does seem like most people get better at some point but it can take many years to find what works for your particular situation. People with just Lyme seem to get better quicker than those with coinfections. We all have those moments when fighting this disease gets to us and we get really pessimistic... I burst out crying last weekend. Then we gotta pick ourselves up and keep on fighting. This battle would be a little easier for me with more caring and supportive people around me. I'm thankful for this forum though and all the wonderful people here.

I'm glad you reached out and shared how you feel. I hope you have comfort in knowing that we are always here!
Posted 4/13/2014 5:03 AM (GMT 0)
The current most successful protocol against Borrelia borgdorferi (which I cured myself twice with after being bitten both in 2010 & 2012) is a pulsed combo, taken every other day, of Minocycline taken together with Tinidazole for 42 days. Only one oral dose of each need be taken every other day. Typical dose for a 180 pound man would be Mino-100mg + Tind-250mg.

In addition one must add some sort of extract (or raw food or food cooked at no more than 165F) containing natural Amygdalin (not Laetrile) like Pinella, Wild Cherry Bark extract or even 5 chewed apple seeds a day to kill the Borrelia that are not actively reproducing. If 10 drops of the herbals are taken in a tea with the same natural ingredients as Celestial Seasonings Red Zinger Herbal Tea, one will be adding more natural anti-bacterial ingredients to the mix to kill the spirochetes or mature round body forms not in the process of replication. One's goal should be to add 25 micrograms of amygdalin a day to their diet, every day, for the entire 60 days.

The Tinidazole will disrupt the DNA containing round body forms sometimes called cysts or blebs when the DNA starts to generate a new spriochete.

The Minocycline will kill the spirochetes actively dividing.

The Amygdalin will kill the spirochetes not in cell division, they have no resistance to the -CN molecule produced but human cells will neutralize it into thiocyanate if they are exposed to it.

Expect a good herx at 2-4 weeks when the Tinidazole kicks in.

One will get rid of ALL the Borrelia in 60 days this way if the herbals are continued on a daily basis after the antibiotics are taken.

If one adds a daily combo of the 4 ingredients found in a product called TriBiotics (by NutriCology for example), one will eliminate many co-infections also. The ingredients are: Artesiminin,Berberine, Citrus Seed Extract and Black Walnut Hull.


For other digestive co-infections one can add Bactrim and Fluconazole or the equivalent, pulsed as needed.


Good Luck!

Sincerely,

Will Wiegman
Posted 4/13/2014 2:28 PM (GMT 0)
Hi cured twice. Thanks you for your reply how soon after being bitten did you start this protocol? I have been taking minocycline 100 mg twice daily since I became infected and tinidazole for about a month now, pulsed 5 days on, 2 days off at around 1 gram each day taken 2 x 250mg pills twice daily. Should I be taking the tinidazole continuously?

What is this amygdaln? I have never heard of it. Also did you ever get any neuro symptoms?
Posted 4/13/2014 2:43 PM (GMT 0)
I'm 39 and quite I'll. When I was 19 I came down with a sudden mystery illness and lost about a year of my life. At the time I was working in a lab with biohazard materials and was in a stressful relationship. I always assumed it was from the lab or the relationship but maybe it was lyme then too?

One day out of the blue, I had a bizzare sensation in my neck and rapidly progressed into other stuff such as tremors, neck pain, full body pain, weakness, fatigue, severe heart palpitations, balance issues, facial nerve issues and other stuff. Saw lots of doctors and was diagnosed with fibromyalgia and mitral valve prolapse.

I basically could no longer do my job and moved back home with my parents and holed up in my childhood bedroom. I couldn't drive because of balance issues, lost all my friends. I had tons of serious prescription meds for pain. I was in tons of pain and I could not walk up a flight of stairs without getting winded or my heart going crazy. It was a very, very dark time for me.

I literally was confined to my room for about 11 months and somehow I just fully recovered. I don't know how. Maybe removing all the negative factors and letting my immune system recover, brought me back. I don't know. It can happen.

If it was lyme back then I've been in remission for a long time and only had very minor bumps in health along the way.

I do think you can recover and you just have to take the pressure off yourself. Loose the toxic relationships if you can because you'll never recover if you are surrounded by people who drive you further into the darkness.

If something isn't working for you and you don't see any progress after about a month or so then change things up. Don't sit on any protocol too, too long if you aren't seeing any results. (I read that from a doctor that recovered from lyme.). I think there is something out there for everyone, you just have to keep trying to find something that works.
Posted 4/13/2014 2:56 PM (GMT 0)
Hi Louise. I have gotten much better but I guess my concern or worry is the chronicness of this illness? Just the thought of that concerns me. I had dreams last night of taking medications but I was concerned they were not working. Also everyone I saw in my dream was well and happy doing their thing. My protocol is working oddly and in am getting better, but I have never reached that point of being symptom free and I guess that's what concerns me? I am concerned maybe I won't make it there?

Also I am concerned about spreading it. I am single so I fear any plans to meet someone and have a kid are lost. I am not sure if it is spreadable after treatment or not, and perhaps I will be okay. So these are other issues that concern me.
Posted 4/13/2014 3:03 PM (GMT 0)
Hi Inspired. Thanks for your sharing. Yes I am making progress and getting better and found something that works but I am still yet to reach the point of being symptom free. It's good to know most people end up getting well.

I totally relate to the social issues! Not only that but Lyme is taking up so much of my brain space (not the disease but just the issue of having it and learning how to treat it) that I don't get to broaden my experiences, if my experiences aren't as broad I'm just not at my best character in social situations anyways. I still try and be cheerful and all but I am just not at my best in the right moment.
Posted 4/13/2014 3:13 PM (GMT 0)
Hi acheivinggrace

Thanks for your great words! That will help me hold a positive attitude. Definitely been changed greatly by this illness and those around me have seen the change as well. I am getting better and back to a decently functioning level where I can now do things again but yes I'm swallowing 4 handfuls of pills each day and it is working. I am fortunate in that this disease didn't cost me my career, and I was barely able to hold onto my job but somehow I did.

I guess I feel a lost sense of faith in this disease being fully treatable. And cureable. I guess some people are able to resolve the illness but perhaps it is the unknown of what the future of this disease brings that is concerning to me? Am I going to be on pills for the rest of my life or am I going to be able to even live like I had before? I just don't know. Also the sexual issues it brings make me confused and questioned? I wonder if I caught an HIV like illness where I can't get married and have kids now or will I get to the point of being symptom free and then be fine and won't risk spreading illness?
Posted 4/13/2014 4:04 PM (GMT 0)
I think you shouldn't worry about the future so much and just worry about today. It's uncessary stress for your current state. Take one day at a time and get yourself well. I would deal with the other issues when the time comes.

Now that the revised amount of cases are like 300k per year, I think more researchers are looking into treatments and cures. So get yourself well and don't burn out on too many antibiotics.
Posted 4/14/2014 4:41 AM (GMT 0)
I feel your pain - some days I'm still completely astonished by the fact that this illness has embedded itself so pervasively in my life, despite how long this has been going on, I think somehow I'm still in shock! Not surprising - this isn't exactly the kind of thing that's easy to accept.

Two pieces of advice - someone touched on this earlier but do try to keep in mind the undeniable fact that believing you'll get better really is necessary. The negativity, the stress spiral, it seems unavoidable but you have to devote a lot of yourself to finding ways to not get bogged down by the stress and the worry and the what-if - it truly is worse for you than the disease itself. Just like being in a good mental state is better for you than the medicine (and I don't think the medicine can work without you working with it!).

Also...it helps me a lot to try to reframe the idea of having a chronic illness and realize that we all have a chronic illness...it's called life! It sounds a little morbid but that's what's going on in life - our bodies are decomposing! We all have a chronic responsibility to keep ourselves as healthy as possible - but those of us who get life-changing illnesses are lucky enough to be forced to take the time to learn more about how to be healthy - often having struggled with illnesses like this gives us an advantage in the end. I find it helps to try to think of it more as a lifestyle than a treatment.

Just know the way you're feeling is normal, and you will come out of it the other side and you will absolutely overcome this thing!
Posted 4/15/2014 1:24 AM (GMT 0)
Lyme pickle - don't give up!! we are both in this at the same time, and we will both get out of it too!! I have had the same feelings as you - but everytime I felt that way, I realized it was a herx - maybe that's what happened to you the other day??

You will get there, we all just need patience.

My Dr. finally "clinically diagnosed me" with Bartonella today - it is SO hard to figure these things out. She clearly said we are working "in the dark" b/c the tests are so unreliable, and there is no clear cut treatment for everyone, it is all individualized. She believes I will be well by the summer.

Keep the Faith, and you will too!!!
Posted 4/15/2014 3:57 PM (GMT 0)
Yes I welcome Will too. I hope he posts a few more things on that Amygdalin stuff.

I will say minocycline and tinidazole that Will has mentioned have helped me get better so I'm not sure why he would get the boot. I like stories that are helpful and hopeful.

I think people should share what got them well!? I have read through so many ways to get better I am trying to go for what I believe works the best for me. Also it's good to coordinate with your Lyme Literate Doctor as they have overseen many different people and guided them on paths to wellness so they may know what works as well. Pretty much all Lyme treatments are controversial one way or another and it could be widely debated what works and what doesn't.
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