What's Wrong With You?

[Red13]

Out of work for at least the next few days, again. They think it's just dehydration from my diuretics(to keep the fluids off my liver), but they want to be sure. Had blood drawn for several tests today, and have to go back to have more drawn tomorrow. I hate this.

Weezer,

I hate to hear you are going through this. I totally get the fatigue you describe. I realize others are trying to be sympathetic when they say, “Im tired too.“, but on the inside it completely belittles the way I feel. I have been “tired“. We are sick to a cellular level and just a good nights sleep is not gonna do it.

A couple weeks ago i went to the grocery store. By the time I got home I could not walk from the car to the house. My legs just did not work. My father in law had to help me inside. There was no way to push through it.

Have you heard of the Spoon Theory?
Every activity costs a spoon. Getting dressed, eating, etc. Some days I have more spoons than others.
My 15 year old son will look at me and say “are you out of spoons Mom?“ So glad he gets it.

 

[Red13]

My wife says the lupus makes her feel this way. She can't make it through a day without napping from exhaustion.

Joe,
I'm sure she rests after minimal activity too.
Like me she opperates on the Spoon Theory. (Described in post above)

 

[Red13]

Lyme is a horrible disease, and I hate reading about anyone who has to deal with it. I was diagnosed about 2 years ago (Lyme, and the co-infections Babesia, and Mycoplasma), but had symptoms and bounced around to different doctors in the same way you did for a few years previously. I am not nearly at symptomatic as you, but it is still not fun. I hope you can find something to help you work towards remission. If you haven't already, you should read up on the Buhner Protocol. It's based around a combination of herbal antibiotics and herbs that help regulate the immune system. It doesn't help everyone, but I've had a lot of luck with it.

Good luck to you with your treatment. FYI, if there were a donation page set up, I would donate to it in a second.

Are you completely well now?
I have tried almost everything!
Have you heard of a rife machine? Thinking of getting that too.

I am getting my records together for the clinic in Germany, then Tex is gonna set me up an account. I hate to do that, but I have not been able to work for 2 years. Any help will be greatly appreciated.

 

[joevol33]

Joe,
I'm sure she rests after minimal activity too.
Like me she opperates on the Spoon Theory. (Described in post above)

She does.

 

[jjay2518]

Are you completely well now?
I have tried almost everything!
Have you heard of a rife machine? Thinking of getting that too.

I am getting my records together for the clinic in Germany, then Tex is gonna set me up an account. I hate to do that, but I have not been able to work for 2 years. Any help will be greatly appreciated.

Definitely not completely well, but I'm functional now where I wasn't before. I'd say I'm about 70% back to normal. Even if this is the most I recover, I'm fine with it.

I've read a lot about rifing but never actually tried it. It sounds like it can legitimately help, but with a fairly high up front cost. The biggest things that have helped me are diet (no sugar or grain, mainly just meat and veggies with some fruit), the herbal stuff I mentioned earlier, and detoxing. I got a small collapsible sauna for a couple hundred dollars, and when I get a good sweat in it a few times a week and stay well hydrated I definitely feel the difference.

 

[Red13]

Definitely not completely well, but I'm functional now where I wasn't before. I'd say I'm about 70% back to normal. Even if this is the most I recover, I'm fine with it.

I've read a lot about rifing but never actually tried it. It sounds like it can legitimately help, but with a fairly high up front cost. The biggest things that have helped me are diet (no sugar or grain, mainly just meat and veggies with some fruit), the herbal stuff I mentioned earlier, and detoxing. I got a small collapsible sauna for a couple hundred dollars, and when I get a good sweat in it a few times a week and stay well hydrated I definitely feel the difference.

Where did you get infected or do you remember?
Did you get the bullseye rash, any rash, no rash?
Labs like Western blot? CD57?
I'm just curious if you fit the CDC' s very narrow box of positive.

I avoid Gluten mostly and try to do like you with single ingredient foods, but fail once in a while.
I sit in the hot tub, but have to make sure Slice is there. I have collapsed once and nearly passed out once.
I detox, detox, detox!!!! Some of my methods most people think is totally nuts, but it makes a difference.
I have an 83 y/o friend at the clinic who has Lyme and he Rifes. He swears by it. He is so healthy looking. He will say I look good but I ain't worth 10 cents!

My best day is 50%. It will be 1 year on April 2 since I was properly diagnosed. I am at least somewhat functional. On February 14th this year is when I finally started feeling somewhat alive.
I have cried so many times asking Slice am I gonna die, because how can anyone feeling this bad be alive.

Thanks for sharing with me. Hearing others have improved really helps!!

 

[joevol33]

Where did you get infected or do you remember?
Did you get the bullseye rash, any rash, no rash?
Labs like Western blot? CD57?
I'm just curious if you fit the CDC' s very narrow box of positive.

I avoid Gluten mostly and try to do like you with single ingredient foods, but fail once in a while.
I sit in the hot tub, but have to make sure Slice is there. I have collapsed once and nearly passed out once.
I detox, detox, detox!!!! Some of my methods most people think is totally nuts, but it makes a difference.
I have an 83 y/o friend at the clinic who has Lyme and he Rifes. He swears by it. He is so healthy looking. He will say I look good but I ain't worth 10 cents!

My best day is 50%. It will be 1 year on April 2 since I was properly diagnosed. I am at least somewhat functional. On February 14th this year is when I finally started feeling somewhat alive.
I have cried so many times asking Slice am I gonna die, because how can anyone feeling this bad be alive.

Thanks for sharing with me. Hearing others have improved really helps!!

I feel helpless with my wife because she fries just like you said. She's all the time saying she feels like she's dying. It kills me.

 

[YankeeVol]

I have Lyme Disease.
Was diagnosed after 4 years of multiple diagnosis and doctors, I was diagnosed in April 2015.
Did I mention a psychiatrist was one of my doctors because it was "all in my head"?
Turns out it was in my head, a brain infection.

I have a port a Cath in my chest for IV s, 7 antibiotics, prescriptions, supplements, etc.
It is late stage Lyme. Very little hope for a cure. I am left with debilitating fatigue, severe joint damage, brain fog, numbness and burning in my extremities, the left side of my face and lips are numb always, chronic sore throat, swollen lymph nodes, after little exertion I collapse, and more.
Haven't been to a Tennessee game in 3 years.

Hoping to fund a trip to a clinic in Germany having success with Lyme. The treatments are not available here.

Oh did I mention I also have PBC (primary biliary cirrhosis) Walter Peytons disease.

Ok start your violins......Now!!!

4 years? That's terrible. I was diagnosed rather quickly, about 2-3 weeks after being bit.

 

[jjay2518]

Where did you get infected or do you remember?
Did you get the bullseye rash, any rash, no rash?
Labs like Western blot? CD57?
I'm just curious if you fit the CDC' s very narrow box of positive.

I avoid Gluten mostly and try to do like you with single ingredient foods, but fail once in a while.
I sit in the hot tub, but have to make sure Slice is there. I have collapsed once and nearly passed out once.
I detox, detox, detox!!!! Some of my methods most people think is totally nuts, but it makes a difference.
I have an 83 y/o friend at the clinic who has Lyme and he Rifes. He swears by it. He is so healthy looking. He will say I look good but I ain't worth 10 cents!

My best day is 50%. It will be 1 year on April 2 since I was properly diagnosed. I am at least somewhat functional. On February 14th this year is when I finally started feeling somewhat alive.
I have cried so many times asking Slice am I gonna die, because how can anyone feeling this bad be alive.

Thanks for sharing with me. Hearing others have improved really helps!!

I don't actually know when I was originally infected (never had a rash). My doc thinks it was most likely when I was younger, and the infection(s) more or less sat dormant and hit me later. I got hit by it all like a ton of bricks while I was in grad school dealing with a ton of stress over a long period of time. One day totally fine, the next day a wreck. I spent years bouncing around to different doctors getting all sorts of whacky diagnoses.

Once I finally found a good Lyme doc, I tested positive for Babesia and Mycoplasma. Didn't test CDC positive for Lyme but had some Lyme related antibodies so based on that and symptom history my doc has been treating me for all three. My CD57 was actually surprisingly high. I think I've had better luck than others with treatment because my immune system isn't totally wiped out.

Glad to hear you're making some progress. I've been treating it aggressively for about 2 years now. It's slow going, and a lot of times you feel like you're taking two steps forward and one step back, but it definitely feels worth it when you have days where you feel normal again.

 

[joevol33]

I didn't know Lyme disease was so bad until reading the posts you all wrote.

 

[Red13]

I feel helpless with my wife because she fries just like you said. She's all the time saying she feels like she's dying. It kills me.

Joe you live in Ga right? My doctor is Charles Adams at Full Circle Medical Alternative Medicine in Chattanooga TN - Charles C. Adams, MD
He has saved my life. Your wife's situation sounds a too familiar. I'm not saying she has Lyme, but he can certainly look into it. Also, he works miracles. It does require work on your part too. I have confidence he can help.
He is a molecular biologists and has been Internal med since the 80s. He added in alternative medicine about 15 years ago.
He listens to you. I am a nurse and it takes a lot for me to like doctors after working with the turds for 22 years. I have so much respect for him.

I know it must be so hard to be a man listening to your wife questioning death. I have gone to bed telling him if I don't wake up then....... He is such a doer and this is something he can't fix.

 

[Red13]

I don't actually know when I was originally infected (never had a rash). My doc thinks it was most likely when I was younger, and the infection(s) more or less sat dormant and hit me later. I got hit by it all like a ton of bricks while I was in grad school dealing with a ton of stress over a long period of time. One day totally fine, the next day a wreck. I spent years bouncing around to different doctors getting all sorts of whacky diagnoses.

Once I finally found a good Lyme doc, I tested positive for Babesia and Mycoplasma. Didn't test CDC positive for Lyme but had some Lyme related antibodies so based on that and symptom history my doc has been treating me for all three. My CD57 was actually surprisingly high. I think I've had better luck than others with treatment because my immune system isn't totally wiped out.

Glad to hear you're making some progress. I've been treating it aggressively for about 2 years now. It's slow going, and a lot of times you feel like you're taking two steps forward and one step back, but it definitely feels worth it when you have days where you feel normal again.

It is common not to get a rash. The CDC says 80%, but it is more like 25.
Have you heard of Dr. Richard Horowitz? He is pushing for change with diagnosis and treatment.

Also, most people with co-infections babesia, Bartonella, etc and not necessarily Borriella burgdoferi will have a higher CD57. But Lyme disease isn't just Borriella burgdoferi, it includes many infections.
Mine was LOW!!!

Also, YouTube Darryl Hall Lyme disease He is from Hall and Oats. He was sick too but functional somewhat now.

 

[Red13]

4 years? That's terrible. I was diagnosed rather quickly, about 2-3 weeks after being bit.

I see your name is Yankee Vol. Does this mean you were infected in the Northeast?
Did you have a rash? + lab what we're your symptoms and treatment?

My presentation was not textbook. Plus the "we don't have Lyme disease in the south" attitude screwed me!

I told every doctor my story. It wasn't until I saw this new doctor someone finally listened to me. He tested and I was positive. We have about 6 people in the neighborhood very ill with it.

 

[Red13]

I didn't know Lyme disease was so bad until reading the posts you all wrote.

Most people don't. It is called the great imitator. It mimics autoimmune diseases. It is often overlooked in areas other than the northeast because it" doesn't exist here."

 

[YankeeVol]

I got it in Columbia SC. No rash, no red ring.

Had a 103.1 fever and went to the clinic. Ran all kinds of tests and couldn't figure it out. Then the doc asked if I had been bit by anything and at first I had said no. Bout 10 minutes later I remembered I had a tick on me after a trail half marathon. They ran a blood test and called me back a few days later to tell me I had Lyme Disease. I was on antibiotics for 21 days. Haven't had any complications since (2012).

 

[Red13]

I got it in Columbia SC. No rash, no red ring.

Had a 103.1 fever and went to the clinic. Ran all kinds of tests and couldn't figure it out. Then the doc asked if I had been bit by anything and at first I had said no. Bout 10 minutes later I remembered I had a tick on me after a trail half marathon. They ran a blood test and called me back a few days later to tell me I had Lyme Disease. I was on antibiotics for 21 days. Haven't had any complications since (2012).

I am so glad you were treated so quickly. It makes a difference.

 

[jjay2518]

It is common not to get a rash. The CDC says 80%, but it is more like 25.
Have you heard of Dr. Richard Horowitz? He is pushing for change with diagnosis and treatment.

Also, most people with co-infections babesia, Bartonella, etc and not necessarily Borriella burgdoferi will have a higher CD57. But Lyme disease isn't just Borriella burgdoferi, it includes many infections.
Mine was LOW!!!

Also, YouTube Darryl Hall Lyme disease He is from Hall and Oats. He was sick too but functional somewhat now.

Oh yeah, the diagnostic criteria are a mess right now. There's lots of re-education that needs to happen regarding Lyme. The name Horowitz sounds familiar. I hope more people keep pushing for things like that.

I've actually thought that it's quite likely I don't have Bb. I don't have a lot of the traditional Lyme symptoms like joint pain and extreme fatigue. Most of my symptoms have been strange neuro stuff. My doc more or less said that it's safest to just treat all three since Lyme testing is so inaccurate and some of the antibiotics overlap in the treatments anyways. I always just tell people I have Lyme though because it's easier than the full explanation. Plus like you said I kind of consider it to be the full collection of infections and not just Bb.

I didn't know that about Darryl Hall. I read an article recently about Christie Rampone. She plays on the US women's soccer team and has Lyme. I have no idea how that's possible.

 

[jjay2518]

I got it in Columbia SC. No rash, no red ring.

Had a 103.1 fever and went to the clinic. Ran all kinds of tests and couldn't figure it out. Then the doc asked if I had been bit by anything and at first I had said no. Bout 10 minutes later I remembered I had a tick on me after a trail half marathon. They ran a blood test and called me back a few days later to tell me I had Lyme Disease. I was on antibiotics for 21 days. Haven't had any complications since (2012).

That's awesome and very lucky. If you're treated early, the success rates are very high.

 

[jjay2518]

Most people don't. It is called the great imitator. It mimics autoimmune diseases. It is often overlooked in areas other than the northeast because it" doesn't exist here."

It's funny. My dogs' vet was talking last year about how Lyme is getting worse around TN and they've been recommending the vaccines more recently. I know doctors that still won't admit it though.

 

[Weezer]

Where did you get infected or do you remember?
Did you get the bullseye rash, any rash, no rash?
Labs like Western blot? CD57?
I'm just curious if you fit the CDC' s very narrow box of positive.

I avoid Gluten mostly and try to do like you with single ingredient foods, but fail once in a while.
I sit in the hot tub, but have to make sure Slice is there. I have collapsed once and nearly passed out once.
I detox, detox, detox!!!! Some of my methods most people think is totally nuts, but it makes a difference.
I have an 83 y/o friend at the clinic who has Lyme and he Rifes. He swears by it. He is so healthy looking. He will say I look good but I ain't worth 10 cents!

My best day is 50%. It will be 1 year on April 2 since I was properly diagnosed. I am at least somewhat functional. On February 14th this year is when I finally started feeling somewhat alive.
I have cried so many times asking Slice am I gonna die, because how can anyone feeling this bad be alive.

Thanks for sharing with me. Hearing others have improved really helps!!

It's good to cry, but don't let depression swallow you whole. Same goes for Slice. One of the hardest things for a man to suffer through is to watch the woman he loves in pain and to know nothing he can do can fix it. Men of our generation were raised to believe we could fix anything. That feeling of helplessness can really eat you up if you're not careful. I hope the two of you stay strong for each other.

I do know where you're coming from though. I spent a few nights in the hospital haunted by thoughts I was going to die. The thing is, I'm not afraid of dying. Having never found my own special someone, what I'm really afraid of, is leaving my parents with no one to take care of them.

 

[YankeeVol]

It's funny. My dogs' vet was talking last year about how Lyme is getting worse around TN and they've been recommending the vaccines more recently. I know doctors that still won't admit it though.

I thought the vaccine didn't work? Or maybe it was just the early one that came out. I got it growing up as I was always in the woods.

 

[vol_in_ar]

Red
when do you need tickets for Germany

 

[Weezer]

I feel helpless with my wife because she fries just like you said. She's all the time saying she feels like she's dying. It kills me.

Same advice I gave to Red and Slice, don't let yourself or your wife be swallowed by depression. No matter how bad her illness gets, stay strong for each other. Most don't realize how lucky they are to have found love, so hold tight to it, and let it steer you through. I can't promise you things will get better, but I've never met a person who regretted having love in their life.

 

[Weezer]

Are you completely well now?
I have tried almost everything!
Have you heard of a rife machine? Thinking of getting that too.

I am getting my records together for the clinic in Germany, then Tex is gonna set me up an account. I hate to do that, but I have not been able to work for 2 years. Any help will be greatly appreciated.

If we can't help our own, we shouldn't be calling ourselves Volunteers. Don't hate asking for help. Everyone needs a helping hand in life at some point.

 

[Red13]

Oh yeah, the diagnostic criteria are a mess right now. There's lots of re-education that needs to happen regarding Lyme. The name Horowitz sounds familiar. I hope more people keep pushing for things like that.

I've actually thought that it's quite likely I don't have Bb. I don't have a lot of the traditional Lyme symptoms like joint pain and extreme fatigue. Most of my symptoms have been strange neuro stuff. My doc more or less said that it's safest to just treat all three since Lyme testing is so inaccurate and some of the antibiotics overlap in the treatments anyways. I always just tell people I have Lyme though because it's easier than the full explanation. Plus like you said I kind of consider it to be the full collection of infections and not just Bb.

I didn't know that about Darryl Hall. I read an article recently about Christie Rampone. She plays on the US women's soccer team and has Lyme. I have no idea how that's possible.

Part of the problem is this is a syndrome. There is more than one culprit making it very difficult to diagnose and treat.
Our current pharmaceutical culture has a pill per condition. BP pill, heart pill, diabetes pill, pain pill, seizure pill etc
This is a syndrome. It requires a collection of treatments. No one and done here.

Also Yolanda Foster,, a female basketball player
I don't know how anyone plays a sport. This fatigue is not something anyone can push through. My joints are in terrible shape. I can't go up and down stairs. I have arthritis in all of my vertebral joints.

The Neuro symptoms really suck. Brain fog dizziness, but I hate more than anything feeling like Betty Spaghetti. Like my limbs are wet noodles with weights on them.