Dr Horowitz's take on SEID (Lyme Dr)

[A.B.]

Plus I have a bunch of evidence that what causes CFS is the same thing that is causing Lyme symptoms, but I haven't compiled it yet.

So you have figured out not only CFS but also Lyme?

Are you on drugs or something?

 

[lansbergen]

Plus I have a bunch of evidence that what causes CFS is the same thing that is causing Lyme symptoms, but I haven't compiled it yet.

I doubt very much what you think it is, is the same I think it is.

 

[Vic]

So you have figured out not only CFS but also Lyme?

Are you on drugs or something?

I made a point to recover without drugs so I could properly CONTROL my self-experiment, UNLIKE many of these LLMDs.

 

[heapsreal]

Positive thinking is one thing and most here are positive but its another to say that you can think your self well. There has been many attempts from others to come on here with their own spin on positive thinking saying its a cure and then try to sell something?

if it was all about being positive than why have so many pushed and crashed and kept pushing with work and exercise to only make their condition worse.

The lightening process is very similar but it gets people to deny any symptoms. Maybe if one had a purely psychological condition it might help but if one has a physiological condition than its going to take alot more than denial and positive thinking to get better.

Unfortunately most people advocating these things seem only interested in making a dollar out of us because they think we are vulnerable. But most of us who have had cfsme for a lengthy time have had others try to screw us over with the BS positive thinking psychobabble type stuff.

many of us are desperate to get better but we aint suckers and we tread very carefully with those who say they have all the answers.

 

[Vic]

@heapsreal Except I'm not saying positive thinking is how you cure it, but feeling your full spectrum of emotions when they happen and not hold them back is just helpful, like eating a good diet.

And I'm not going to charge anything. Once it's done I'm putting it on the internetz free.

The reason why I come here is for your perspectives and inspiration for actually finishing it. And also to see if I can make sense of all your experiences.

 

[lansbergen]

Except I'm not saying positive thinking is how you cure it, but feeling your full spectrum of emotions when they happen and not hold them back is just helpful, like eating a good diet.

And you know what a good diet is for curing ME????

 

[Vic]

And you know what a good diet is for curing ME????

Tons of a large variety of vegetables. Meat/fish and fat to fill you the rest up. No beans, gluten, dairy. Start with low sugar, but consume as tolerable. Low glycemic index ones like berries are best. Good clean water. Good salt, like pink Himalayan rock salt or Celtic sea salt. To fill in any micronutrients I might've I bought a bunch of cheap herbs and spices to just throw on food. Turmeric and Saigon Cinnamon are good. Only supplement I used were Omegas, particularly 3, preferably not from seed sources.

Organic/local is best, but spend money well.

 

[Cheshire]

Tons of a large variety of vegetables. Meat/fish and fat to fill you the rest up. No beans, gluten, dairy. Start with low sugar, but consume as tolerable. Low glycemic index ones like berries are best. Good clean water. Good salt, like pink Himalayan rock salt or Celtic sea salt. To fill in any micronutrients I might've I bought a bunch of cheap herbs and spices to just throw on food. Turmeric and Saigon Cinnamon are good. Only supplement I used were Omegas, particularly 3, preferably not from seed sources.

Organic/local is best, but spend money well.

Are you cured then?

 

[Vic]

Are you cured then?

Almost as best as I can be. I have some permanent damage, but I'm still getting better. In some ways I'm actually better than I was before I became extremely fatigued.

 

[lansbergen]

Almost as best as I can be. I have some permanent damage, but I'm still getting better. In some ways I'm actually better than I was before I became extremely fatigued.

How do you know the damage is permanent?

How does fatique cause pemanent damage?

 

[Vic]

How do you know the damage is permanent?

How does fatique cause pemanent damage?

I have a tear in some of my pec major and some sort of damage in my low back (SI joint) and front hip. They contribute to the fatigue, are not the primary source, but were caused by the primary source.

Fatigue is caused by permanent damage, though not necessarily by tears.

 

[heapsreal]

I have a tear in some of my pec major and some sort of damage in my low back (SI joint) and front hip. They contribute to the fatigue, are not the primary source, but were caused by the primary source.

Fatigue is caused by permanent damage, though not necessarily by tears.

They seem orthopaedic type injuries and arent apart of any cfs/me criteria. I can understand any chronic pain will cause fatigue. Have you been diagnosed with cfs/me?

 

[lansbergen]

I have a tear in some of my pec major and some sort of damage in my low back (SI joint) and front hip. They contribute to the fatigue, are not the primary source, but were caused by the primary source.

Fatigue is caused by permanent damage, though not necessarily by tears.

What is the primary source?

Ach, fatique is caused by permanent bone damage?

 

[Vic]

They seem orthopaedic type injuries and arent apart of any cfs/me criteria. I can understand any chronic pain will cause fatigue. Have you been diagnosed with cfs/me?

No, but they go hand-in-hand in many cases of CFS/ME. I wrote in the other post I more than met CCC criteria.

My list from CCC: Fatigue, PEM, Sleep dysfunction (frequent waking with my arm/leg paralyzed/asleep, elevated heart rate, though low heart rate variability while awake, feel like shit when I wake, etc), significant pain not just from my injuries,

All of the following: impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances–e.g., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory–e.g., photophobia and hypersensitivity to noise–and/or emotional overload, which may lead to “crash”2 periods and/or anxiety.

6. (From CCC) OI, IBS, frequent urine, recurrent feverishness and cold extremities, loss of adaptability, tender lymph nodes (inguinal in groin, don't know about auxiliary), recurrent flu-like symptoms, general malaise, food (gluten/dairy intolerant) and chemical sensitivities (exhausted after smelling mold, cleaners, gasoline, exhaust, perfume, etc).

Persisted more than 6 months.

What is the primary source?

Ach, fatique is caused by permanent bone damage?

I'll let you try to guess the source . It could be from bone damage, but in my case it wasn't. Actually maybe it was. I'm not sure yet. Right now it doesn't seem like it, or I just hope not.

 

[lansbergen]

I'll let you try to guess the source

I have better things to do.

 

[Dufresne]

The biggest question to me is what the rate of false-positives is. Many LLMDs are diagnosing the condition based on statistically improper use of the tests, like going strait to the Western Blot without doing the ELISA test first. If there is something else that is revving up the immune system, like we commonly see in CFS, the person may have antibodies to B. burgdorferi from a past infection, but only because the body is trying to protect from everything, just in case. I may have this wrong, but to my knowledge the ELISA tests to see if there are actual spirochetes, and the WB tests for the specific antibodies, which is why you need both. Just using WB has a high rate of false-positives. Doctors who diagnose for Lyme just based on clinical presentation are, frankly, idiots.

Plus I have a bunch of evidence that what causes CFS is the same thing that is causing Lyme symptoms, but I haven't compiled it yet.

Vic, the ELISA misses at least 44% of cases. Unfortunately what usually happens after this is the doctor tells the patient they categorically do not have borrelia. This happened to me and it cost me almost a decade. But that's my fault for naively believing the medical establishment was looking out for me.

If somebody wants to eat earthworms and believes it makes them healthier, I'm cool with that. (Actually earth dragon peptide is supposed to be a decent immune modulator.) The point is most experimentation done by people on this forum is beneficial in some way and should be encouraged. It's better than just engaging in activism and waiting for some saviour. And when folks have negative experiences with such treatments they're free to report them here, and we all learn from this practice. But repeatedly denouncing a school of thought that many here are greatly helped by is not what the forum is all about.

 

[Vic]

Vic, the ELISA misses at least 44% of cases. Unfortunately what usually happens after this is the doctor tells the patient they categorically do not have borrelia. This happened to me and it cost me almost a decade. But that's my fault for naively believing the medical establishment was looking out for me.

If somebody wants to eat earthworms and believes it makes them healthier, I'm cool with that. (Actually earth dragon peptide is supposed to be a decent immune modulator.) The point is most experimentation done by people on this forum is beneficial in some way and should be encouraged. It's better than just engaging in activism and waiting for some saviour. And when folks have negative experiences with such treatments they're free to report them here, and we all learn from this practice. But repeatedly denouncing a school of thought that many here are greatly helped by is not what the forum is all about.

You make good points. It just irritates me when I see what I think is usury bullshit being sold to vulnerable people with a very high chance of causing them real damage.

 

[A.B.]

You make good points. It just irritates me when I see what I think is usury bullshit being sold to vulnerable people with a very high chance of causing them real damage.

We all want better treatments and diagnostic tests. I find it grossly unethical to do nothing while a patient's health deteriorates. I also find it unethical to promote psychogenic explanations as quick knowledge gap fillers. That's just a way to justify doing nothing in my opinion.

 

[Vic]

We all want better treatments and diagnostic tests. I find it grossly unethical to do nothing while a patient's health deteriorates. I also find it unethical to promote psychogenic explanations as quick knowledge gap fillers. That's just a way to justify doing nothing in my opinion.

Again, not offering psychogenic explanations.

 

[A.B.]

Again, not offering psychogenic explanations.

Oops:

Except there is obviously a psychological component to the triggering of CFS/ME symptoms.