Severe brain symptoms and still declining

[Aerose91]

I thought the general consensus was that you can have Lyme on its own (which can be very bad) or you can have Lyme and ME, Lyme being a welcome mat for ME/CFS

 

[Valentijn]

I thought the general consensus was that you can have Lyme on its own (which can be very bad) or you can have Lyme and ME, Lyme being a welcome mat for ME/CFS

That's my take as well ... plus other infections can lead to ME/CFS, without Lyme. PEM is not a symptom of Lyme, according to the experts, and my Lyme predates my ME/CFS symptoms by almost 20 years.

 

[Martial]

That is possibly the dumbest statement I have ever heard. I wish all chronic fatigue was lyme. Not everyone with CFS tests positive for Lyme. Must be nice of your doc to live in such a simple universe. lol

I don't think blanket statements are ever very helpful, however keep in mind testing for lyme is very difficult. Most people do not test positive because they are too sick to make the antibodies, usually they come out positive further along in treatment as it is. They also resort to things like checking for spirochetes instead of antibodies as well. False positives don't usually occur but false negatives are definitely the norm. Lyme is no joke though, it is very tricky to treat and sometimes very fatal as well... Not really an easy thing to deal with.

I don't think it is very helpful to say that every case is stemming from lyme though, there are many other things that could be going on and lyme seems like just one culprit, you don't want to narrow peoples options down by already creating a set opinion of belief in causative illness. There are other possibilites besides lyme and co infections and it is very important people know what they are dealing with to get better.

 

[Daffodil]

That is possibly the dumbest statement I have ever heard. I wish all chronic fatigue was lyme. Not everyone with CFS tests positive for Lyme. Must be nice of your doc to live in such a simple universe. lol

xks201 you misunderstood.

late stage lyme is the same as CFS, according to dr. burrascano too, the world expert on lyme.

neither are infectious diseases alone- they both have autoimmune components which keep our bodies from being able to deal with the infections.

this is a lot more complex than just saying we all have lyme. chronic lyme and CFS are the same with respect to the immune problems that underlies them both.

 

[Martial]

xks201 you misunderstood.

late stage lyme is the same as CFS, according to dr. burrascano too, the world expert on lyme.

neither are infectious diseases alone- they both have autoimmune components which keep our bodies from being able to deal with the infections.

this is a lot more complex than just saying we all have lyme. chronic lyme and CFS are the same with respect to the immune problems that underlies them both.

this makes perfect sense when you state that they are both resultant cluster symptoms from underlying causes, in that sense it is pretty sensible but better to just drop the attachment to labels and call them both issues pertaining to immune system, neuro system, brain etc.. Each individual with their own unique profile and needs, so much goes into play here it is very hard to put into categories.

I also don't think there is a specific same trigger that is 100% for everyones case, it seems highly personalized for different people.. its not like all of a sudden everyone will find some miracle answer for all cases or anything. It is a state of disease that has many paths to it but yielding finally to the same dysregulation of the mind body organism.

 

[xks201]

oh okay I see

 

[Wayne]

@Aerose91, I just got done watching a 5-part YouTube video done by a young woman who's 95% recovered from Lyme. What I found interesting is that her first Lyme associated symptoms were depersonalization and then derealization. It wasn't until about a year later she was tested for Lyme and began to address it physically.

Interestingly, antibiotics didn't work for her, but a relentless pursuit of all kinds of natural remedies has brought back her physical health, and her depersonalization and derealization went away in the process. I found her story quite interesting and quite compelling. The things she listed that helped her are all things I've considered or tried, but never all at once. It appears her success was due to doing everything at once, leaving no stone unturned.

Here's a link to the first video:

Lyme Cured Naturally - Heather's Story (1/5)

 

[Martial]

@Aerose91, I just got done watching a 5-part YouTube video done by a young woman who's 95% recovered from Lyme. What I found interesting is that her first Lyme associated symptoms were depersonalization and then derealization. It wasn't until about a year later she was tested for Lyme and began to address it physically.

Interestingly, antibiotics didn't work for her, but a relentless pursuit of all kinds of natural remedies has brought back her physical health, and her depersonalization and derealization went away in the process. I found her story quite interesting and quite compelling. The things she listed that helped her are all things I've considered or tried, but never all at once. It appears her success was due to doing everything at once, leaving no stone unturned.

Here's a link to the first video:

Lyme Cured Naturally - Heather's Story (1/5)

Awesome video, yes it appears no one method works for everyone. I am using a natural approach for now as of myself, fell into a rather large set back recently but I believe it is because I am hitting it harder and need to slow down a bit. I am already feeling a bit better from it now.

 

[stevesayshi]

This is a very old thread, but here goes. When I felt my mind slipping away the most, high dose niacinamide helped bring it back.

LDN may be very good for brain inflammation too.

 

[shannah]

This is a very old thread, but here goes. When I felt my mind slipping away the most, high dose niacinamide helped bring it back.

How high did you go Steve?

 

[Aerose91]

Thank you for the input, Steve. I've been on LDN for a long tike now with no change. I take injectable vitamin B but niacin is only one ingredient, not sure if I'd consider it high dose

 

[Soundthealarm21]

I have been dealing with derealization for 10 years now (way before the other symptoms started) and for me it's one of those things that I've had to get used to. I have to pinch myself to feel sharpness to make sure everything is real. The way I talk to people no one would ever guess what i'm dealing with even thought I tell them that I feel as though i'm dreaming. I've done a good job of adapting as best I can.

There have been a few times where it has gone away and each time it has been after taking adderall. It increases dopamine, epi, and norepi. That has led me to believe it's possibly an adrenal issue. What caused the adrenal issue would be a huge question. My answer would be a neurotoxin affecting the pituitary such as Lyme or mold.

That's just me rambling on. @Aerose91 just know you're not alone in the struggle. It's a scary symptom that makes you feel lonely, but just knowing i'm not the only one stuck in a dream land has comforted me.

Stay strong.

 

[stevesayshi]

How high did you go Steve?

I rapidly got up to 3 g a day for a week. But then it left me wiped out, probably undermethylated. I take 250 mg maintenance and 1 g when I feel the anxiety starting to slip into ... that sort of animal terror. I don't think I would call it derealization, exactly, more like a shut down of prefrontal cortex function. It has worked so far.

 

[steve b]

Your cognitive symptoms are similar to mine. I've had CFS since 1997, have seen countless physicians over the years (including Cheney, Goldstein, Gordon), but now know my problem is mold sensitivity.
I strongly suggest you go to the surviving mold website, take the visual contrast sensitivity (VCS) test. Read the attachment.

 

[Aerose91]

@steve b

Thank you for attaching that. However I have done the VCS test twice now and passed it both times. my current doctor is strongly affiliated with Dr Shoemaker and has looked hard into mycotoxins. I've seen some great doctors and some rebound ME specialists yet no one has a clue what to do with me and why my brain is so much worse than they've ever seen.

 

[perchance dreamer]

I recently started taking the Longvida form of curcumin. I was starting to have a little short-term memory loss, which freaked me out since I have Alzheimer's in my family.

It has really helped with the memory loss, so I'm encouraged. I'm also finding it very calming.

 

[Hip]

@Aerose91
Did you ever have any blow to the head prior to the development of you symptoms? If so, your symptoms might be due to hypopituitarism. See: How doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'

 

[Aerose91]

@Aerose91
Did you ever have any blow to the head prior to the development of you symptoms? If so, your symptoms might be due to hypopituitarism. See: How doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'

That was actually considered because my symptoms parallel that. However preliminary checks of my hormones, particularly thyroid are at acceptable levels (not great but not horrible) I got ME from encephalitis though so I guess that does count as a brain injury, just not traumatic.
It makes me think that the location of the initial virus plays a huge role in this illness because my brain is where it all is. If I overexert it effects my brain, not my body.

 

[Hip]

@Aerose91
It might be growth hormone (HGH) deficiency rather than thyroid-stimulating hormone (TSH) deficiency.

If you look at this Wikipedia article on hypopituitarism, you see that if there is a deficiency, often all the anterior pituitary hormones will be deficient; but you can also have the case where you get individual deficiencies in just one hormone.

This post lists HGH deficiency symptoms.

I recently gave myself an 8 day course in daily subcutaneous CJC-1295 injections, 250 mcg a day. CJC-1295 stimulates the secretion of HGH, and has been shown to be just as effective as HGH injections in the case of HGH deficiency. CJC-1295 is relatively cheap, and can be bought on websites that sell peptides for body builders. In my case, I did not notice any benefits of CJC-1295 after 8 days (but then I understand it may take 2 months before the effects of HGH are noticed).

 

[Aerose91]

@Hip

My growth hormone has been low for a couple years now from my date all fatigue which I had before ME. I haven't had it tested lately but I'd be curious to know what it is now. Also, my ADH is very low and that is from the posterior pituitary. I know that's fairly common in ME though.