HealingWell
Search Close Search
☰

Hang on in there!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/25/2024 8:06 PM (GMT 0)
Hi there,

6 years ago approximately I was diagnosed with Lyme and a number of comorbidities. I went through a rough patch. I was lucky enough to get diagnosed quite quickly and I was treated in Germany, in a dedicated centre that, unfortunately, shut down a few years later. I went through a 1.5 years abx treatment, with a variety of combinations. The treatment worked for me and my condition that had never been very severe improved a lot and I am now following a normal life with very few lingering symptoms.

The reason of this post is two fold:

1. I am deeply thankful to this forum for all the support I received from it. I was not posting many threads, but this was my emotional pillar during many months. As you know, Lyme is an illness that isolates you and that nobody understands, even the closest ones. I would like to give big thanks to all the people taking care of the forum and all the contributors. This was live saving for me.

2. I was very lucky to recover (don't know if for the longer run yet) but I would like to tell you: hang on in there, don't loose faith in your recovery. Be resilient, you also will make it.

I bumped into the forum by coincidence, and this is a good sign that I do not need to visit it very often, but from time to time for a sense of gratitude, I do it. And today I decided to drop you this few words.


Thanks big family, hang on in there!!!


Pillin
Posted 1/25/2024 8:20 PM (GMT 0)

Pillin said...
Hi there,

6 years ago approximately I was diagnosed with Lyme and a number of comorbidities. I went through a rough patch. I was lucky enough to get diagnosed quite quickly and I was treated in Germany, in a dedicated centre that, unfortunately, shut down a few years later. I went through a 1.5 years abx treatment, with a variety of combinations. The treatment worked for me and my condition that had never been very severe improved a lot and I am now following a normal life with very few lingering symptoms.

The reason of this post is two fold:

1. I am deeply thankful to this forum for all the support I received from it. I was not posting many threads, but this was my emotional pillar during many months. As you know, Lyme is an illness that isolates you and that nobody understands, even the closest ones. I would like to give big thanks to all the people taking care of the forum and all the contributors. This was live saving for me.

2. I was very lucky to recover (don't know if for the longer run yet) but I would like to tell you: hang on in there, don't loose faith in your recovery. Be resilient, you also will make it.

I bumped into the forum by coincidence, and this is a good sign that I do not need to visit it very often, but from time to time for a sense of gratitude, I do it. And today I decided to drop you this few words.


Thanks big family, hang on in there!!!


Pillin

Thank you for coming back to post this!

I am also in remission.

You can continue to improve after treatment stops… as the body (and the brain) heal.

I finished treatment a few years ago. and I’m in “remission”
I have continued to improve since and I am able to work again and hold down a part time job.
I was off work for over 5 years!!
Posted 1/25/2024 9:03 PM (GMT 0)
That's wonderful Pillin! Thanks for the encouraging post! This is exactly what I was looking for when I first came here, people overcoming Lyme so I would know it's possible!
Posted 1/25/2024 9:27 PM (GMT 0)
very nice! glad you feel better now.

its a sad fact they close a lot of LLMDs in germany because they sort of start cracking down on them for some odd reason...
Posted 1/26/2024 5:21 PM (GMT 0)
Thanks for the encouragement Pillin, And Yes, I agree this is a wonderful forum…with very helpful people who provide insightful information.

It’s good to know that it is possible to heal from these terrible illnesses.💜
Posted 1/27/2024 3:49 AM (GMT 0)

Pillin said...
I went through a 1.5 years abx treatment, with a variety of combinations. The treatment worked for me and my condition that had never been very severe improved a lot and I am now following a normal life with very few lingering symptoms.

I am curious what treatment worked for you.

I have found that treating these infections requires very specific combinations of antibiotics, and that just taking random abx usually doesn't work, so I'm wondering what you found effective.
Posted 1/27/2024 10:01 AM (GMT 0)
So happy for you that you are doing better! would you mind sharing what helped you? I would love to see a detailed explanation of everything you did that helped and maybe what else you tried that didn't help, that would be very helpful if possible! thanks for sharing your success story
Posted 1/28/2024 2:49 AM (GMT 0)
Pillin,

That’s wonderful news!! Thank you for dropping by to let everyone know. Success stories are always uplifting.

God bless!!
Posted 1/28/2024 8:55 PM (GMT 0)
Thanks all for your comments!!!

How did I do it? Well, I have to tell you upfront that my condition was not very bad, although I remember I counted like 25 symptoms. One key thing for me was to keep track of all these symptoms on a daily basis. I am quite obsessed with numbers and data and I created an excel file with a table in which I tracked down the 25 symptoms each day. I categorised the symptoms in different ways, but in a numeric way, simple way. Then I graphically represented the total (addition) of all the symptms metrics and also the moving averages.

Why am I explaining this? Because I represented in parallel the different combinations of abx I was taking at any moment and quite clearly I saw the combinations working for me and the ones that didn't. Actually I was performing a Clinical Trial on myself, but this info was very telling for my doctor. It is not that she told me to do that, but it was my scientific approach (I am PhD in Chemisty by training and worked in a pharmaceutical company as medicinal chemist).

I took plenty of food ingredients and stuff but only those that made sense to me. I have to tell you that many stuff and treatments that are being discussed in the forum made no sense to me and I would not try them.
I went almost gluten free (90%), no sugar at all (I was not already taking it, but I left sweet food), no dairy only goat kefir (plenty), less meat more vegetables (although my diet was already very healthy, mediterranean), and I was lucky the abx worked for me. I was fortunate and now, although I still have some symptoms it is basically over, at least for the time being. I managed to keep exercising and after the abx treatment I managed to improve quite a lot my sport achievements. One of the things that went away were the nightmares. Once or twice a week I had bad dreams that made me scream, all of a sudden after some months of treatment, I realised that this went away. What a relieve!!

I think there is not a silver bullet for this and everyone needs to find what works for him/her. And emotional support. That is key, and I got a lot from this forum. Thanks again!!

Best,


Pillin
Posted 1/29/2024 1:38 PM (GMT 0)

Pillin said...
T.....I counted like 25 symptoms. One key thing for me was to keep track of all these symptoms on a daily basis. I am quite obsessed with numbers and data and I created an excel file with a table in which I tracked down the 25 symptoms each day. I categorised the symptoms in different ways, but in a numeric way, simple way. Then I graphically represented the total (addition) of all the symptms metrics and also the moving averages.

Why am I explaining this? Because I represented in parallel the different combinations of abx I was taking at any moment and quite clearly I saw the combinations working for me and the ones that didn't.

well done on taking a systematic approach to guiding your treatment

i recommend anyone self treating do take a similar approach - because otherwise tracking small changes over time ( which is to be expected if there are no silver bullets) is extremely difficult to near impossible.

weather, mood, day to day diet changes, changes in our thought processes and beliefs over time etc, etc all conspire to alter our subjective measurements of our health indicators without us being consciously aware of it.

This is where a systematic, objective and repeatable method of assessing progress over time becomes invaluable

i do the same - also using MS Excel - but there are free alternatives that will work just as well - like the Excel equivalent in libre office of open office - or google sheets in a free google account

this needn't be an overly time consuming process- each day can mainly be a copy and paste of the column from the day before - with just a few alterations for what changed

if anyone is interested i have posted more detail on how to do this and even provided a simple template to download - see my other posts with user palermo for more info

thank you for sharing your experience

all the very best !
✚ New Topic ✚ Reply