Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[lenora]

It's hard to get the correct MRI, but worth it. Will Dr. Bolognese read them if sent to him by mail? That would help immensely.

Also, when the SM and Chiaris clinics were first formed (& Dr. Bolognese was just being trained), special accommodations were provided for out of town people. I don't know if this is still the case or not, but it would be worth checking into. If you want warm weather, FLA is a good place to go. A lot of research, good doctors and universities in many parts of the state. May give you a breather from the Maine winter....I'm not to up on current doctors, although I know the University of Miami is devoting considerable resources and has good doctors on staff. A call to them may be worthwhile. Again, the doctors I knew have since retired, etc., and new names and faces have replaced them.

I understand that it's not easy to go anywhere. Sadly, that's what we often have to do. A good recommendation would be helpful and many doctors will recommend others....it's worth asking. Yours, Lenora

 

[Nord Wolf]

If you want warm weather, FLA is a good place to go. A lot of research, good doctors and universities in many parts of the state. May give you a breather from the Maine winter....I'm not to up on current doctors, although I know the University of Miami is devoting considerable resources and has good doctors on staff. A call to them may be worthwhile. Again, the doctors I knew have since retired, etc., and new names and faces have replaced them.

I understand that it's not easy to go anywhere. Sadly, that's what we often have to do. A good recommendation would be helpful and many doctors will recommend others....it's worth asking.

Thanks Lenora. Florida, I will never move to that state. I’ve been there many times and it is far too crowded and polluted for my taste. Florida has more polluted unsafe freshwater than any other state in the country.
However, yes they do seem to have a lot of high quality research going on down there. I would love to get in with Nancy Klimas, MD. However, as you said, travel logistics and energy as well as her incredible wait list is a bit daunting.

I never considered CCI or other structural issues in the neck and base of skull before. Nevertheless, with increasing symptoms, more and more diagnosed conditions, severe increase in neck and upper spine pain, dizziness, vision issues, brain pressure, headaches, etc… I’d be foolish not to get it checked out. So, right now, as usual, I’m in the waiting game for local appointments. From there we shall see what pathways open up. If a supine MRI is ordered, we have good facilities nearby. If an upright is ordered, I have people who would willingly drive me to Albany to that facility.

Today I’m starting LDN, we have ordered a specialized blood test panel, and we are finally again looking more deeply into SGB, which someone will need to drive me to eventually. Who knows, perhaps these avenues will lead to something that erases the neck/spine issues and symptoms and looking into CCI won’t be necessary.

As always, nothing with any of this is simple, cut and dry.

 

[lenora]

Hello @Nord Wolf.....have you tried a cervical collar yet? As usual, I forget the name but I did post it on here just a short time ago. Anyone have it??? It may give you an idea of whether CCI is your problem. Everything is, I know....but if we could just narrow some of it down, it would help. Nancy Klimas's clinic probably has the name of the collar and I would expect the nurse would know. In the meantime, put your name on the list....it's a start.

I'll check more and see if I can find the name for you. Yours, Lenora

 

[Nord Wolf]

have you tried a cervical collar yet?

Nope.

Nancy Klimas's clinic-put your name on the list

Not sure of the point anymore. It isn't like she has cured anyone from this crap.

Don't mind me. Not doing so well mood-wise. Same bed, same couch, same walls, same ceiling day after day, week after week, month after month... and its only January. Just really worn down from it all today. I feel like a saturated bag of mud filled with raw nerves at the bottom of a cold dark ocean trench being pummeled by constant falling boulders. Only so much distraction to use and the misery always seeps through.
Never mind, like I said, don't mind me. I shouldn't even be on here this evening.

 

[lenora]

HI Nord Wolf.....Please don't worry about upsetting me. I've been there myself and while it isn't the perfect time, often it's the time we need to let our feelings out the most. Find something to kick (note I said something, not someone).

I get it. You're an outdoorsman and you can't do anything this season demands. No trapping, hunting, checking out nature.....just the sameness of it all. No sunshine either, for that matter.

Well, it's OK. Crawl into your corner and talk to the walls. It happens to everyone and hopefully you'll feel better about things next week. There isn't even anything good on Netflix, etc., is there?

Write to us about nature. You've written some interesting pieces on survival, so you can do it and chances are you already have. Tell us what your mentor taught you about nature and what it means to us. I'd like to know and I'm sure that others are the same. Feel happier soon. Yours, Lenora P.S. If someone can find out the name of that collar, I'll put it in my notes for another use. Apparently most people find relief immediately after using it. CCI is indicated, but I don't know what the surgical stats are. Anyone??

 

[Wayne]

Same bed, same couch, same walls, same ceiling day after day, week after week, month after month... and its only January. Just really worn down from it all today. I feel like a saturated bag of mud filled with raw nerves at the bottom of a cold dark ocean trench being pummeled by constant falling boulders. Only so much distraction to use and the misery always seeps through.

Hey @Nord Wolf -- I actually appreciated your honest comments. Almost sounds sort of poetic. -- Take care!

 

[valentinelynx]

@valentinelynx - Excellent advice, thank you for taking the time and energy to respond in depth. I will look into this more thoroughly and see what I can come up with. This is just the initial stage of research. I'm on wait lists with various doctors for first consultations concerning this avenue. I also have a dear friend nearby who was recently diagnosed with mild stenosis in parts of the brain and a Chiari 1 malformation. I'm waiting to hear back on who she saw, what tests she had done, and where she got them done.

And I'm in the far north of Vermont, so anywhere in NY is a pretty huge trip for me in my condition.

I'm happy if I was helpful. I do understand about travel. Most CCI patients end up traveling considerable distance to see doctors who have the knowledge to help them, despite the great difficulty involved. Some require medical transport (and a huge insurance battle to qualify for insurance to pay for it). Some travel from (or to) Europe or farther.

I also feel I should comment that there are far more neurosurgeons with experience treating Chiari than CCI. This can sometimes lead to unfortunate outcomes if the patient has both Chiari and CCI (what Dr. Bolognese calls "complex Chiari" because treating Chiari (with posterior decompression) can be futile without also doing a craniocervical fusion in these cases. But also, more simply, your friend may find someone to treat her Chiari who won't have any useful knowledge about CCI. (Sorry, I'm not sure what "mild stenosis in parts of the brain refers to).

I wish you luck in finding the treatments you need!

 

[sb4]

I have just remembered something wierd that could be related to connective tissue disorders. When doctors ask if I'm double jointed I say no but my brother and mother are. However now that I think about it I should have mentioned my skin/bleeding issues.

When I was healthy and doing kickboxing I would very often find my feet bleeding and I would be leaving blood stains on the wooden floor we trained on. Not only that but my tailbone would bleed whenever I did situps leaving a blood stain on my shorts. People used to tell me all the time I was bleeding from my ass (lol).

This happened to no one else. People would say I needed to toughen my feet up but I was there for over a year and it still happened. Not only that girls would train there too and they never had this issue despite having softer skin.

Perhaps I have genetically not great connective tissue that wouldn't be an issue until I caught an illness that also effected connective tissue (via MMP?)?

My neck also seems to be able to bend far over the limit when I had my upright MRI done. Could I do this before getting ill? I don't know.

Anyone else have issues with skin and friction / bleeding?

 

[Nord Wolf]

Anyone else have issues with skin and friction / bleeding?

That would be a NO. I've never been much of a bleeder. I've known people who were, and I know there are numerous conditions where easy bleeding is an issue/symptom. Are you just now starting to research this for yourself?

 

[sb4]

That would be a NO. I've never been much of a bleeder. I've known people who were, and I know there are numerous conditions where easy bleeding is an issue/symptom. Are you just now starting to research this for yourself?

I have dabbled in the CCI connective tissue stuff over the last couple of years. I only just remembered that fact today. It feels more like slightly easy than normal skin breaking. The bleeding wasn't excessive or anything but I think it's significant that I saw no one else with that issue.

I am currently experimenting with a MMP inhibitor stack that hip posted about somewhere on here. So I'll see how that goes.

 

[lenora]

Hi @sb4.....there used to be groups on Facebook that handled Ehler-Danlos (for example). You may get some insight from some of their experiences. I don't believe anything can be done about it....but new things do come along. Good luck. Yours, Lenora

 

[CristianSerious]

Hi everyone, does anyone know a vascular surgeon in Europe who deals with jugular vein compression ?

 

[lenora]

Perhaps @Hip could help you out, or Martin (who isn't on here too often). Sorry, but I'm in TX and have no idea of a doctor in Europe. Good luck. Yours, Lenora

 

[CristianSerious]

Thank you, I also made a post on Twitter maybe will get there some responses:
https://x.com/CristianSerious/status/1800856618151841939

 

[CristianSerious]

I have also found this group on Facebook:

https://www.facebook.com/groups/3737591956275670

 

[dyllanmurphy]

I have a developing case of CCI, and when it flares up I can get crushing fatigue. I'm also seeing more incidence in general of fatigue. My symptoms were primary connective tissue and nonspecific symptoms from the beginning.

 

[Strawberry]

My issues have been flaring lately too. Is there anything that can be done to "toughen up/strengthen" connective tissues? Something other than exercise which makes my ME/CFS worse...

 

[dyllanmurphy]

My issues have been flaring lately too. Is there anything that can be done to "toughen up/strengthen" connective tissues? Something other than exercise which makes my ME/CFS worse...

I think the causes of connective tissue weakness are varied. Could be immune system over/ underreaction, nutritional deficiencies (some of which are not easily overcome just by popping vitamins), infection, genetics, autoimmune diseases, or other unknown causes. Hard to fix without knowing the cause.

Optimized curcumin is a supplement that seems like it might help. One small study found that methylated folate was helpful for hEDS patients with a specific set of genetic markers (though I would be careful with methyl supplements). LDN is a medication that's discussed. Fecal transplant is a big hail Mary kind of option that could fix a bunch of things at once. MMP inhibitors like low-dose doxycycline could work (though if you're already suffering from dysbiosis, this could make things worse).

 

[Wayne]

My issues have been flaring lately too. Is there anything that can be done to "toughen up/strengthen" connective tissues? Something other than exercise which makes my ME/CFS worse...

Hi @Strawberry -- My goodness, it sounds like you've been dealing with a lot lately. Regarding connective tissue, I recently did a post on hyaluronic acid and how it's good for the eyes. I just asked an AI website whether it's also good for ligaments. Below is its reply. In my prior post, I left a link to where I purchased mine. I plan to mix the powder with some of my regular lotion, and apply topically. -- Take care!

Based on the available research, hyaluronic acid (HA) shows promise for treating ligament injuries and disorders, though most studies have focused on its use for tendons rather than ligaments specifically. Here are the key points:​

1. HA has demonstrated beneficial effects on tendon healing and function in both preclinical and clinical studies. Since tendons and ligaments share similar connective tissue properties, these findings may be relevant for ligaments as well.
2. The positive effects of HA on tendons include:
   • Reduced formation of scar tissue and adhesions after surgical repair
   • Improved tissue healing and collagen deposition
   • Decreased gliding resistance
   • Anti-inflammatory activity
   • Enhanced cell proliferation
3. HA's lubricating and viscoelastic properties help improve the gliding of tendons and potentially ligaments, which could aid in restoring normal function after injury.
4. Clinical studies on tendon disorders have shown that HA injections can reduce pain and improve function in various areas like the elbow, knee, and shoulder.
5. While most research has focused on tendons and osteoarthritis, the similar structure and function of ligaments suggest that HA could potentially offer benefits for ligament injuries as well. However, more specific research on ligaments is needed to confirm this.
6. HA is generally considered safe, with a low risk of side effects compared to some other treatments.

It's important to note that while these findings are encouraging, more research specifically targeting ligaments is needed to fully establish the efficacy of HA for ligament injuries and disorders. As always, any treatment should be discussed with a healthcare professional to determine the most appropriate approach for individual cases.​

 

[Wayne]

PEPTIDEs

I remembered there a thread here on Phoenix on BPC-157, and how it's supposed to be good for ligaments. I just asked the AI website the following, and below is the answer.

Are peptides, and especially BPC-157, considered to be good for connective tissue, such as ligaments and tendons? Note if you ever follow up on BPC-157, I've read that you should be sure to get it from a compounding pharmacy to ensure it's freshness. It apparently has a short freshness life, and it's not recommended to purchase online where you're not sure how old it might be.

Answer​

Based on the available information, peptides like BPC-157 show promising potential for benefiting connective tissues such as ligaments and tendons. Here's a summary of the key points:

1. BPC-157 has demonstrated effectiveness in accelerating wound healing in muscles, tendons, and ligaments by stimulating fibroblast formation. Fibroblasts are crucial cells that repair connective tissue.
2. Studies have shown that BPC-157 can be effective for musculoskeletal injuries, including those affecting tendons and ligaments. It has been found to reduce joint pain, improve joint mobility, and boost recovery from injuries.
3. BPC-157 promotes angiogenesis (formation of new blood vessels), which increases blood flow to tendons and ligaments, potentially speeding up the healing process.
4. The peptide has been shown to enhance the healing of various connective tissues, including tendons, ligaments, and muscles. It may help control collagen fragmentation, which is important for maintaining the structural integrity of connective tissues.
5. BPC-157 appears to work through multiple mechanisms, including:
   • Promoting tissue regeneration
   • Reducing inflammation
   • Enhancing blood flow
   • Influencing growth factors crucial for cell growth and tissue repair
   • Modulating the nitric oxide system, which plays a role in muscle repair
6. It has also demonstrated potential in combating muscle atrophy and preserving tissue functionality, which can be beneficial in cases of chronic diseases or severe injuries

While these findings are promising, it's important to note that much of the research on BPC-157 has been conducted in animal studies. Human clinical trials are still limited, and the peptide is not FDA-approved for medical use. Additionally, its long-term effects and potential risks are not fully understood. As with any medical treatment, it's crucial to consult with a healthcare professional before considering the use of peptides like BPC-157 for connective tissue healing.

​