How are all of you doing these days?

Hi, Rainy!

Right now I'm taking a few supportive supplements, but not targeting a specific infection. My knee pain has been improving, possibly thanks to a new mattress topper and a new physical therapy approach. I've been impressed with the Primal Trust program so far, and I hope more folks check it out, as many could benefit. It takes a lot of time, so it's been a challenge to integrate. I'll post a detailed review when I'm finished in a few months.

Life feels busy because I'm doing more than I have in many years, and catching up on pandemic-delayed appointments for my family and me, while also trying to make sure we have plenty of social time and things to look forward to. My days are taken up by homeschooling, gardening, house stuff, and friends, plus as much self-care as I can manage!

How about you?

RainyCloud said...
Hi everyone! 🤩

I've seen some updates here and there but wanted to ask everyone reading this, how all of you are doing these days?

So for example:

• Is your treatment going well?
• What infections are you currently attacking?
• Which infections did you successfully get rid of?

• What is your daily life like at the moment?
• Any other major or minor things going on?
• Any plans this particular week and/or weekend?

You don't have to answer these questions in particular, they are just some examples.
I hope that you are all doing well!

I am in remission.
I successfully got rid of Bartonella, lyme and possible Babesia (not sure I had Babs but was treated for it.)

My daily life is great - I am back to working - picking up shifts here and there.

I’m making up for lost time.

This past year we (husband and I) went to three concerts (Brian Adams, Matchbox Twenty and ColdPlay)

Also we went to Hawaii in March for my son’s wedding.

Life is good.

Hi,

My treatment was going pretty well…I got the rash on my hands almost gone, but could tell I still had issues.(morgellons)…

…but then I started slacking off on my herbal protocol and along with eating more sugar and having some stress issues my hands are ravished again…with itchy/open cuts from morg. So now I’m picking up on my herbs again…cutting all sugar and stress is more manageable.

I’m not really sure what infections I’m successful at getting rid of…recently thought that I may have a candida overgrowth (because it seemed like I only got so far with Lyme/morg. rash on hands) so I’m adding things like apple cider vinegar, oregano oil, coconut oil, etc.

Daily life like at the moment is pretty good (except for hands) when they are not itching they’re hurting with some periods of relief)…I am weighing lifting 3x week, stress is low…just trying to get back to where I was with my treatment.

I really would like to see an improvement soon so I can spend some time with my grandson…hopefully this will happen.🙂

Hi MyJourney101,

I'm so sorry to hear your hands are ravished again. But on the bright side, at least you know the herbs were working and that it's possible for them to heal!

I used to have candida, I found that the natural remedies work better than the rx-meds for it. Here's what worked for me:

- mct oil
- undecylenic acid
- black walnut hulls
- pau d'arco
- berberine (can be constipating)

I might be forgetting some, but this is most of what worked in the end.

That's so great to hear about the weight lifting too and the low stress. I feel like stress especially can hold us back so much. Thanks for the update and I hope that you can spend time with your grandson too!

RainyCloud said...

I used to have candida, I found that the natural remedies work better than the rx-meds for it. Here's what worked for me:

- mct oil
- undecylenic acid
- black walnut hulls
- pau d'arco
- berberine (can be constipating)

I might be forgetting some, but this is most of what worked in the end.

Thanks RainyCloud, I’ll have to look into those suggestions.

BlazerGermany said...
I am getting really really impaitient at the Moment.

I want to be in Remission. I know i have to be grateful because i am better then before and i moved from mod-severe to moderate but still. I hate being sick so Bad. Its so stupid..

I want to be at a bar drink a Beer with my Friends and listen to country music get baptized finally and live a good conservative Life and Work hard.

I cant even Work i hate this so much i am so done with this crap

When in reality i do feel better then i have before but i feel i am super plateaud and dont move forward.

I guess I feel a bit odd posting here as I've concluded that I don't have lyme so I feel like I'm not of much use.

However, your frustrations are understandable. This life comes with so many challenges. It is great that you're grateful for the improvements you have made and it is valid for you to be frustrated that things aren't moving along as we hope.

Medicine - most of the time - has promised an answer and a time frame for most illness. With everything, there are uncertainties and challenges but generally medicine generally insists that things will be okay, in the case of acute problems.

Sadly medicine being geared towards acute and not chronic problems is the reality and will continue to be. Life and death can't really wait, whereas if you're tired, it's just a case of "well you're not dead or dying." Even though a chronic illness can feel like a slow, long drawn out death at times.

Those things are great to hold on to, your goals in life. Hold on to them, work towards them however you can. Someday you'll get there.

One day at a time has been a helpful perspective for me. In some especially dark, grim moments.

I pray and hope we'll all get there some day. Whenever that is, God knows.

My son's treatments are going well. No issues as long as we remain relentless. I can't let up with the low doses of Samento and Banderol. I'm not sure if he had co-infections. The symptoms I thought may have been caused by bartonella and babesia co-infections have been gone for many years.

Although Lyme has responded to treatment, it damaged his nervous system during sensitive developmental windows in childhood, and that damage still must be dealt with. There is still damage to attempt to partially reverse. His auditory processing deficiency is profound. He's been through so much speech therapy, vision therapy, occupational therapy and physical therapy. I've woken up to the significance of the auditory processing disorder just recently. I thought it had already been well treated, but it hasn't been sufficient.

Kids who are similar to him and who have been treated by his doctor have improved their auditory processing from HBOT and neurofeedback. I'm a little bummed out, because the money isn't there right now, and he's already a teen-ager. Neurofeedback is not very widely available in my state, and insurance doesn't cover it here. A home HBOT chamber is obviously costly.

But I bought a pair of Forbrain headphones with the last of the HSA money, and we're just getting started with those. He'll be using those for a while, with six weeks on, four weeks off. During his first six weeks, his reading speed and comprehension increased by leaps and bounds. Clearly, something is happening, and it wouldn't work if there was too much brainstem damage. Forbrain uses bone conduction, which is able to bypass parts of the inner ear to go to the brainstem ten times faster than by going through the eardrum. Every kind of bone conduction system has medical research literature showing it helps. I think the most important thing is to use it. More, more, more. More frequency, more intensity, more duration. That's what harnesses neuronal plasticity. So I guess we'll just keep going with these Forbrain headphones as long as they hold up, and then eventually try HBOT at some point. Neurofeedback is probably too risky when done remotely.

There's not much money for the summer this year, but summers can be good without much money. We'll have bonfires, beaches, a garden, backyard science experiments, fishing and all kinds of other things to do. That plus reading and other activities while wearing Forbrain headphones! It won't be too bad. He's a happy kid, and he likes doing things outside.

brantheman, I know what you mean. When the days pass while being sick it can be discouraging. Just know that you're doing everything you can. Stay strong!

Well, I sometimes feel a little out of place here because my health problems are no longer the tick infections themselves, but the other immune and auto immune problems they possibly caused (along with genes).

Health symptom wise I was feeling really good 2019-2022. Then my good thyroid Dr retired, which means my treatment went downhill. So trying to improve this. Plus being primary immune deficient (Low Igg Hypogammaglobulimia) is not improving. Having chronic immune conditions that have no cure is starting to get depressing (again).

On the plus side:
my past ANA antibody, which has tittered into the bad zone years ago has not gone back there. That was possible lupus scare for a short time.

And Nice weather in my opinion. It’s been a pretty cool spring so far (North Central US). I take cool weather much better than the hot weather we already had last year at this time. I Have not turned on the AC yet!

Post Edited (astroman) : 6/1/2024 7:54:25 AM (GMT-8)

Girlie- it’s so common for thyroid patients to noticeably feel better higher up in the ranges. Yet Doctors ignore this. Maybe they are afraid of making people feel hyper.

In 2008 and 2009 when the FDA was going through all the companies (Causing them problems and headaches ) that sold pig thyroid in the US, you temporary could not get any.

During that time, there was a place in Florida that still exist called Florida meds south ; they import meds from other Countries. I got Canadian Erfa pig thyroid for five years through that place. The price was still fairly reasonable too. They just took a little bit off the top not much.

Post Edited (astroman) : 6/1/2024 2:35:07 PM (GMT-8)

Astroman I've had that same feeling of wondering if I really belong here, for similar reasons.

But in reality chronic Lyme involves damage to the body and/or nervous system that has to be reversed or managed, and it varies across individuals, what that damage and what that reversal or management may look like.

Lots of people who are recovering from chronic Lyme struggle with auto-immune problems and gut dysbiosis, and your stories can help somebody else.

One way we can hope to get meaning out of what we've suffered by our stories helping somebody else. You never know who you might help. Maybe you'd know it, or maybe you'd never know it.