HealingWell
Search Close Search
☰

How is everyone doing lately?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/21/2024 9:17 PM (GMT 0)
I just wondered how everyone has been doing lately? Have you been trying anything new? Working on anything different? Seeing progress with anything?
Posted 4/22/2024 3:00 AM (GMT 0)

pinkblossom said...
I just wondered how everyone has been doing lately? Have you been trying anything new? Working on anything different? Seeing progress with anything?

I’m doing well - no return of symptoms.

How are you doing, pinkblossom?
Posted 4/22/2024 1:16 PM (GMT 0)
I recently started the Primal Trust program. Since I recommend the DNRS program to people so often, I wanted to see how the programs compare. So far, I've been most interested in polyvagal theory and how a divided mind state contributes to the cell danger response. There's also an extensive network of built-in ways to get support from others going through the program as well as daily live classes and Q&As with Primal Trust coaches, so that's probably highly appealing for the folks who have trouble sticking with something more independent like DNRS. That said, it's still fully self-paced. I'm still fairly early in the program, but it's been decent quality thus far. The videos have a hokey sort infomercial feel to them, but after a while I realized a lot of information was being shared, with great graphics and helpful workbook questions. The repetition is intentional, and the information has to start out basic in order to be inclusive of a diverse audience. In the Q&As, it's more obvious that these people really know their stuff and are building toward something more sophisticated than it seems. Clearly I'm interested in not just this type of treatment but in the best way to operationalize it!

I'm also still struggling with my knees. MSM cream seemed to be helping, but I think it was just the usual fluctuation in the severity of this symptom. (It flares most when I ovulate and a bit before my period, probably indicating that prostaglandin production is an issue. Serious stress also worsens it.) Antimicrobials seemed to be causing a herx, but the herx only went away about 50% and I've just stayed in a crummier state for probably six weeks now. Now there's a tightness in the back of the knees sometimes when I fully extend them, like perhaps I'm developing Baker cysts, in addition to the localized pain in the medial area right where the tibia and femur meet, so that's my first indication that fluid is building up. Still no swelling other than that, no stiffness, clicking, heat, redness, etc. My physical therapist is clueless. I have various appointments scheduled for other things, and just don't have time to add a bunch more, but I suppose I will have to eventually. I'm not accustomed to symptoms that are aggravating but aren't associated with a comprehensive full-body malaise, so that still throws me off as I assess what's wrong.

Hope others are doing well!
Posted 4/24/2024 8:45 PM (GMT 0)
That’s great Girlie! And thanks for sharing about your experiences with primal trust Sara! Very interesting

I recently found out I have iron deficiency (without anemia), my ferritin levels were 7 so my GP prescribed 6 weeks of ferrous sulfate tablets which increased it to 33. Then I stopped for a couple of weeks and it went down to 24 so they’ve prescribed it me again for 12 weeks. Once I’m over 30 my GP will stop prescribing but I’m planning on continuing this time (self treating) until I get to around 100. Has anyone else experienced iron deficiency?

I’ve also started doing ozone insufflations at home.

I’ve also been doing internal family systems therapy to help with dissociation, trauma, nervous system, mental health etc I do it alongside microdosing psilocybin

Post Edited (pinkblossom) : 4/24/2024 12:53:30 PM (GMT-8)

Posted 4/24/2024 8:50 PM (GMT 0)
Hi!

I moved myself from Bedbound to Housebound again.

Mainly PACING , Citalopram, Doxycycline and minocycline, Lots of herbs....

Thankful every day i am Out of the darkest place even though i am still severely ill. I can sit in the sun Sometimes again, god is great.
Posted 4/24/2024 9:50 PM (GMT 0)
Pinkblossom, I also had low ferritin without anemia. My doctor prescribed ferrous bisglycinate chelate, which gave me immediate intense liver pain and I could not tolerate it. With diet and other forms of iron, I have been able to raise my ferritin, but it's still usually lower than 30. I hope the ferrous sulfate helps and provides the benefits people hope for when raising ferritin!

Have you noticed any improvement from the ozone insufflation?

I did IFS therapy for two years and was very impressed. I talked my partner and a close friend into trying the approach as well, and they have found it so helpful. Getting a solid grounding in that framework has been really important for my mental health and for dealing with both past trauma and the ongoing trauma of chronic illness.

Blazer, that's definitely an improvement to celebrate! I'm so glad you're able to be more active.
Posted 4/25/2024 12:54 PM (GMT 0)
My son's most severe symptoms are long gone, all except for facial nerve palsy, which continues to return occasionally and intermittently. After 3 1/2 years of Samento and Banderol, a recent trial of one week without Banderol (per his doctor's recommendation to attempt to wean off the herbs as I feel comfortable) caused numbness and pain to begin to return on the left side of his face.

I just restored Banderol to its previous dose. He has not yet completely returned to his previous baseline, but he says he no longer experiences numbess and pain on the left side. I reported this to the doctor, who wants to try again to wean off the herbs in the summer. I'm not so sure about trying again to wean off the herbs so soon. Years of experience have taught me that once it happens again, it takes a long time to return to previous baseline. I feel like my credibility is low with doctors the more open I am with them about the most traumatic things that have happened in the past. I'm struggling now with anger at the doctor. It's a good thing I don't need to talk to him for another three months. It will give me more time to get over my anger and plan what I will say.

My son's biggest remaining symptom is auditory processing disorder. During his relapse that occurred about five years ago, his auditory processing speed took a nosedive. He needed ten seconds to process everything people said to him before replying to them. That symptom is gone, but speech therapists and school professionals both notice that he performs several levels higher when information is presented to him in a visual instead of an auditory way.

For him it has always taken more than killing things and waiting for improvement. I don't think he will improve in his auditory processing without auditory processing therapy. Right now all we can afford is Forbrain headphones. I spent almost the last of our HSA money buying a pair. But these headphones are a lot cheaper than the neurofeedback and the hyperbaric oxygen therapy that might be more likely to significantly help. At least it will be something, not nothing, while I wait for the HSA money to eventually build up enough again to do something that will probably help more.
Posted 4/28/2024 1:39 PM (GMT 0)
Sara I remember you said that you are seeing someone for mitochondria issues, I presume that is because of fatigue? have you considered that your fatigue might be caused by low ferritin? you said it is still in the 30s, as many people with iron deficiency have symptoms if it is below 100
Posted 4/28/2024 5:18 PM (GMT 0)
I'm back trying Disulfiram as that is the only therapy that has had a noticeable significant benefit for me in the past onc ein chronic stage. This time I started real slow, like 25mg every third day, and increasing every two weeks. Currently I am at 25mg twice a day. I have noticed here and there I have some improved days. Not great days but maybe a few hours where I don't feel terrible and can get out of the house for a bit. However, bad flares are still popping up. Currently I am in a flare that has been going on in an intense fashion since last Sunday.

My doctor had me add in Colostrum to my protocol to see if it helps with my gut issues. After taking that for about a week that's when this current intense long-lasting flare started. I'm not sure if the colostrum was the cause or it was just a part of my cyclical symptoms, but I stopped the colostrum temporarily and once my flare lightens up I'll start it again but at a lower dose.

I'm really hoping the Disulfiram can give me some noticeable improvements as I would love to have some hope, but time will tell. This illness is a beast.
Posted 4/28/2024 6:30 PM (GMT 0)
Pinkblossom - I had an initial consultation with a naturopath who said (after 15 minutes of hearing me describe my health since I first got sick eight years ago) that she'd start by addressing mitochondrial dysfunction. I have not had an actual appointment with her yet, though. Fatigue has not been a major symptom for me since about five years ago (when I treated MCAS and did limbic system retraining). It has been a while since my ferritin has been tested, too, so I'm not sure what it is at present! Are you tolerating the ferritin supplement okay?
Posted 4/28/2024 11:54 PM (GMT 0)
Someone else used to make a social “how are you doing?” Post like this here a few years ago. Good to see one again.

I wish I could say I was doing good. I did for about five years up until last summer.

Came up with some more test that I should do for auto immune, thyroid, adrenals And gut issues. Going to present some ideas to a regular doctor, who is in the same clinic as my functional doctor. Hopefully that’ll be a good enough reason to do some of these tests. Functional doctors that take insurance are pretty hard to get appointments. three months apart is too far away.

Not too much traffic here today

Post Edited (astroman) : 4/28/2024 4:00:57 PM (GMT-8)

Posted 4/29/2024 7:51 PM (GMT 0)
Hi, I was doing pretty well with the itchy rash on my hands…it was going away, however, I could still tell my hands were still experiencing some issues…like dry/flakiness on my palms.

Now, at times I’ve been “testing” to see if I can handle eating anything with wheat in it… It seems that I was doing okay with small amounts of wheat in my diet, but lately I ate a few things that had wheat and now I’m paying for it…My hands are itchy again (especially at night)…with morg. rash 😕So I’m pretty sure I will be going gluten free again for a while.
Posted 4/30/2024 12:50 AM (GMT 0)

MichiganLymie said...
My son's most severe symptoms are long gone, all except for facial nerve palsy, which continues to return occasionally and intermittently. After 3 1/2 years of Samento and Banderol, a recent trial of one week without Banderol (per his doctor's recommendation to attempt to wean off the herbs as I feel comfortable) caused numbness and pain to begin to return on the left side of his face.

I just restored Banderol to its previous dose. He has not yet completely returned to his previous baseline, but he says he no longer experiences numbess and pain on the left side. I reported this to the doctor, who wants to try again to wean off the herbs in the summer. I'm not so sure about trying again to wean off the herbs so soon. Years of experience have taught me that once it happens again, it takes a long time to return to previous baseline. I feel like my credibility is low with doctors the more open I am with them about the most traumatic things that have happened in the past. I'm struggling now with anger at the doctor. It's a good thing I don't need to talk to him for another three months. It will give me more time to get over my anger and plan what I will say.

My son's biggest remaining symptom is auditory processing disorder. During his relapse that occurred about five years ago, his auditory processing speed took a nosedive. He needed ten seconds to process everything people said to him before replying to them. That symptom is gone, but speech therapists and school professionals both notice that he performs several levels higher when information is presented to him in a visual instead of an auditory way.

For him it has always taken more than killing things and waiting for improvement. I don't think he will improve in his auditory processing without auditory processing therapy. Right now all we can afford is Forbrain headphones. I spent almost the last of our HSA money buying a pair. But these headphones are a lot cheaper than the neurofeedback and the hyperbaric oxygen therapy that might be more likely to significantly help. At least it will be something, not nothing, while I wait for the HSA money to eventually build up enough again to do something that will probably help more.

That’s great that your son’s worse symptoms are better.
Posted 4/30/2024 2:04 PM (GMT 0)
Thank you Girlie. LDI and modified Cowden did the heavy lifting insofar as the worst Lyme symptoms were concerned. But the healing didn't happen without a lot of supportive stuff. Nightly epsom salt baths from the time he was a toddler. MB12 shots every two days, going on ten years now. CBD oil twice daily, going on nine years now. Low FODMap diet, Feingold diet, gluten and dairy free diet, mostly organic, GMO-free. Traditional Chinese herbs for neurological ailments. (Chinese Skullcap, Gardenia jasminoides, Gastrodia elata blume) LDA for food and inhalant allergies every eight weeks, going on ten years now.

He might not even need Ketotifen right now if not for the aftermath of Omicron in 2022. His tics were fluctuating between 95% gone and 99% gone for a long time. Then after Omicron not only did the tics worsen and not return back to previous baseline. I think the tics are just an obvious outer symptom of things going on under the hood that nobody really completely understands. They really seem to have an awful lot to do with histamine dysregulation, since DAO made them finally go away completely.

His doctor is probably right that he has MCAS and has had it for a long time. Likely it had become milder and then Omicron made it worse and it never returned to baseline after that. He spent the first five years of his life in a moldy oldy house. I just wasn't clued in about such things at the time. Before he ever developed any obvious Lyme symptoms, he already had digestive and allergy symptoms.

I always hoped that he didn't really have MCAS and enough Lyme treatment would make it go away, but it never happened, and here we are. I have definitely heard a number of stories about Lyme treatment making MCAS gradually milder. I know it happens for some people.

The management of it all is something that has to become simplified for his sake when he becomes a young man and even more so for when I'm not around anymore. It needs to become less complicated and less expensive. So I still feel a lot of anxiety about the future. I can't really make most doctors understand this aspect of it all. I suspect they don't really believe me that all the things that I think have helped, really have helped, and are still necessary for maintaining previously attained progress.

The future goal is easier maintenance and less expense, for his sake when he eventually needs to take over his own health care.
Posted 4/30/2024 7:21 PM (GMT 0)
I hope it goes well with the Primal Trust program saraeli.

It's been up and down for me.
Main issues are still sensitivities and increase in symptoms when there is too many toxins in my system.
I started at CrossFit gym three months ago that I been to about once a week, but decided to leave as I have been reacting too much to the locker room that has a sour smell.

Found a new CrossFit gym a bit further away that seems really good, but have only been there once.
A problem after CrossFit and after mountainbike that I recently started with for the year, is that cardio really seems to increase the amount of toxins in my body. Same for massage that I just went to the first one in many years and plan to start going more frequently.

I hope my body is able to push through after a while so this doesn’t become a big of problem that it is now. Today has been quite bad and I had to cancel training and rest in bed for a while when I was supposed to work.
I have also started some new training for the nervous system, but there isn't enough time to get it in as much as I want to, as there are so many other things I'm working on also.
✚ New Topic ✚ Reply