This is topic For those in remission/know @ remission-time sick and treatment time?? in forum Medical Questions at LymeNet Flash.


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Posted by me (Member # 45475) on :
 
For those of you in remission or who know others who are in remission or able to enjoy life more, I have some questions:

1. How long were you symptomatic before you got diagnosed and started treatment?

2. How long were you in treatment?

3. What treatment(s) did you do?

4. What coinfections or other health problems did you have?

I went about 11 years being symptomatic and misdiagnosed before treatment. I have Lyme, babesiosis, bartonella, mast cell activation disorder . . .

I'm about a year and one month into agressive lyme and anti malarial treatment. I was on a big upslide this past July and had a lot of hope.

Now I'm on a big downslide and wonder if I will ever get better? I'm trying to tell myself that a year and one month into treatment is relatively not far into treatment considering the amount of time I went undiagnosed and the infections manifested themselves throughout my body, so it will take quite a long time to heal.

But being on such a downslide, it's easy to think that hope is lost again.

Any input as to how "normal" all of this is and how many people went through this or if you know of people who went through this but are a lot better or in remission is appreciated.
 
Posted by Tincup (Member # 5829) on :
 
So very sorry you are feeling discouraged and sick too! Hugs my dear to you and your little dog too.

I'm not answering all those questions- brain not that into all that work- sorry- but, I've known people to be on IV for 4 years and only at that point did they start improving.

For some it is 2 years or more before seeing any improvement. Many have ups and downs throughout the treatment process.

If you want some facts and figures, the LymeDisease.org surveys should help.

Here is one.

https://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf

And this one in full publication.

https://peerj.com/articles/322.pdf

I want to add... there is nothing more depressing than finally feeling better and then relapsing or getting worse. Nothing.

NOTHING.

I made it to the point on my first go-around where I felt so much better. I had hope, finally. Then I started going downhill for some reason.

I was pretty sure I was the only one that happened to back then and I had no one to compare notes with at the time.

And I was pretty sure no treatment would ever work. And I was pretty sure I was going to die.

I didn't want to face going backwards- how could I after so long being sick and knowing there was a "good" to achieve and I'd done it, but I couldn't sustain it.

But, for some reason God wouldn't let me die. And I'd wanted to. I really did. It was bad.

Eventually I got back on the horse and was determined to try again. Not many other choices actually.

And again I started feeling better, and again rode that wicked roller coaster up and down. It wasn't easy. But, I did it.

And you can too. Shake off the doubts and fear and learn from others experiences that this isn't an uncommon feeling/situation and you will get better again.

I know. Being sick sucks. But, your only other option is to stick your head in the toilet and stay like that till someone has to flush it.

Your choice pumpkin head. We are with you. Hang in there!

[group hug]
 
Posted by Notti (Member # 43843) on :
 
This is one of the hardest parts of treatment. The ups and downs. It can be so demoralising. This disease just takes the life out of you.

My mother always says: it will be alright. And she is always right. [Wink]
Sometimes you just need others to remind you that things will get better again.

Every time you go down will be followed by a time when you get up again.

You were making progress, so you were obviously on the right track. From what I've read, you have a great doctor.
Most flares are temporary and will go away on their own. Trust your treatment and trust your doctor to find a solution if needed.

Don't be discouraged.
 
Posted by sixgoofykids (Member # 11141) on :
 
quote:
Originally posted by me:
For those of you in remission or who know others who are in remission or able to enjoy life more, I have some questions:

1. How long were you symptomatic before you got diagnosed and started treatment?

2. How long were you in treatment?

3. What treatment(s) did you do?

4. What coinfections or other health problems did you have?


Any input as to how "normal" all of this is and how many people went through this or if you know of people who went through this but are a lot better or in remission is appreciated.

1. Thirty years. But got bitten again, three years no treatment, then finally got diagnosed. Another three years until I got better.

2. 3 years

3. Antibiotics/herbs for 20 months. Then photon treatment. Went to Germany for the first 3 weeks of it. Continued at home afterward. Also treated parasites, heavy metals, GI issues, etc.

4. Bartonella and babesia. Parasites. Heavy metals.

If treatments aren't working or if you seem to be holding in one pattern without ever cycling to a higher level of wellness, it's time to change treatments. It can be done. Hang in there.
 
Posted by me (Member # 45475) on :
 
Thank you so much, my sweet Tinny, Notti, and Sixgoofykids. I appreciate your input a lot.
 
Posted by Brussels (Member # 13480) on :
 
1. about 6 months

2. 4 years, non stop

3. many, mostly dr. K's approach, Buhner, homeopathics like Sanum / Heel / classic, teeth / cavitation, tapping accupuncture, Chinese herbs, PE1 and nosodes

4. All coinfections my lyme doctor could test for. Many times reinfected (and I am still bitten, every year.....)
 
Posted by Brussels (Member # 13480) on :
 
My daughter was 2 years old, when she got her first bite.

1. she was sick from day 1 after bite

2. about 3 years, she went some times in remission, relapsed, got bitten again... Like myself.

3. abx (didn't work), and other therapiess more or less like me (except the teeth part).

I forgot to add heavy metal chelation (for both of us), including the KPU (that didn't work).
for her allergy free diet helped

4. Many coinfections, including FSME. She had been re-bitten so many times, so it is not a static picture (coinfections vary at every new bite).

the important question is: how long can one stay in remission.

Just keep treating. Most people get much better!!
 
Posted by jsnyde2 (Member # 7888) on :
 
I was symptomatic for about 6 months, abx for 3 months. Treatment was a penicillin of some kind, Ceftin and Zithromax - the latter had to pulse cuz it was rough.

Completely symptom free for 10 years except a little afternoon fatigue, but my normal friends complain of that too.

Bit this September, in treatment again. Trying a combo of Doxy, Ceftin & Dapsone for total of 8 weeks. I am pretty much symptom free after 2 weeks of Doxy & Ceftin, but forging on with Dapsone next week. Not gonna mess with it.
 
Posted by fatherguido (Member # 25266) on :
 
1. How long were you symptomatic before you got diagnosed and started treatment? I was infected six months which migrated to late stage thanks to three rounds of steroids [Frown]

2. How long were you in treatment? I was better after two years but unfortunately, broke my leg very badly in a skydiving accident so LLMD kept me on another year of treatment from potential shock to my system.

3. What treatment(s) did you do? abx, supplements, mild exercise, weight training, yoga, detox, complete diet overhaul, parasite treatment, and most importantly, my biggest stressor in my life left (I now call her my ex-wife).

4. What coinfections or other health problems did you have? I was lucky to only get RMSF as only confection but did a small candida treatment as well.

I currently relapsed from not being careful with steroid use last year for a back injury.
 
Posted by bluelyme (Member # 47170) on :
 
Me you are always giving hugs so here is a big one back at you . I am also a little over a year into treatments ..feeling very tired of this crap, using bvt abx herbs rife and anything else ..parasites are part of it. .some stuff better ,vision better ,livedo better ,hypoglycemia better , twitching better ...
had giardia ,ascaris have ,cpn ,ebv, borrelia ,bart bacilliformis ,proto/toxo , possible rmsf and babs

i keep picking a date to make it too..xmas then birthdays yay...

there was that article about mcad lady who got better with antiparsitacals ? Hugs me
 
Posted by TF (Member # 14183) on :
 
1. Symptomatic for over 10 years before being diagnosed.

2, Treated for 3 years. First 2 years, was on only one antibiotic the entire time and no treatment for coinfections. So, 13 months of proper treatment.

3. Burrascano antibiotics for 13 months plus Burrascano diet and exercise program.

4. Had lyme, babs, and bart. A few bouts with candida.

I completed my treatment over 11 years ago and I am still symptom free, enjoying my life. I have the same life I had before lyme treatment, Praise God!!!!

It still seems like a miracle to me that I have a normal life, even though it has been 11 years since I got rid of this horrendous disease. I still thank God every day that I do not have this disease back.

I got bitten again 3 years after treatment ended and got bulls eye. (What a horror!)

30 days of 3 antibiotics took care of that. So, I got lyme twice. But, the second time, I got treatment within a week of the bulls eye from my same lyme doc, so all it took to clear it was 30 days of GOOD treatment.
 
Posted by ilovedogs (Member # 48866) on :
 
I was sick for 8 years prior to diagnosis.

I treated for 15 months with heavy duty orals and then switched to Byron White herbals. Treated lyme, bartonella and babesia.

I was well for close to 3 years. Working, raising my kids, exercising, etc.

Had a very stressful time this fall and had a relapse but am already doing much better-working on some candida issues.

I can honestly remember the 14 month mark of treatment and thinking "why am I doing this? I'm not getting better?". Things quickly turned around for me after that.

Treatment does get long, disheartening and frustrating.

My LLMD told me I would start to have brief moments where'd Id feel ok. Those moments would turn into longer moments, hours, then days. That is how it happened for me. It can happen for you too
 
Posted by me (Member # 45475) on :
 
Thank you, everyone, for your feedback. I truly appreciate it.

I spoke to my LLMD today. He thinks the babesia is becoming resistant to my current treatment and is changing the treatment and going to hit the babesia hard.

Thanks for the hugs back, Blue. [Smile]
 


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