If you need support, understanding, and love, let us know here.

@laura-f, and tell your hubby not to forget the chocolate!

❤️ ? ❤️ 

Hi everybody. I need some help. My friend, I have been leaning on since my husband died, is very ill, and four doctors don't know what is wrong. I hope somebody here might have a psychic idea of his illness. They said he has less than a year. He is 55. He has had massive weight loss, a low grade fever, and no cholesterol count. They said his liver was OK, but the liver makes cholesterol.  He has shin bone pain, and his skin feels like it is turning inside out. He has a high white blood count, which may be because of his fever. He says he has temors, and his chest feels numb. I thought it might be aplastic anemia,or even an over-active thyroid. Can any of you help? Thank you so much if you can.

I'm feeling like it's more than one diagnosis (just because you have one horrible thing going on doesn't mean you can't have another).

I think something that's both autoimmune and endocrine system. Extreme thyroid disease maybe, combined with an inflammatory myopathy. Another possibility is a fast moving cancer like a multiple myeloma, which is why the docs would "give him a year".

Your friend needs to get more medical opinions from experts. Depending on where you live, I'd suggest finding the nearest annex of MD Anderson or Sloan Kettering. If that's not near you, get recommendations for a good oncologist AND an immunologist AND a hematologist.

With complex cases, sometimes the only way to diagnose is to rule out things one at a time. Good luck. Sending good vibes for fast answers.

@laura-f

Thank you so much for helping. I'll tell him what you said.Thank you again.

@elaineg, I’m very sorry for your friend.  I also understand how difficult this must be for you.   I know this appears quite serious, and that multiple systems seem to be involved.  When and how did his symptoms begin?  I understand how exasperating it is to seek out other opinions, especially when you are feeling so ill, but I do agree with Laura.  Things need to ruled out.  If at all possible, I would consult with other medical experts, preferably with a large research hospital.

I am sending prayers for his comfort, strength and healing, and that he receive divine guidance.  And I surround both of you with peaceful light.

@deetoo

It started this year with a possible heat stroke, then he got pneumonia. It has all been very sudden. Could adrenal insufficiency have something to do with his problems?

@elaineg, Gosh, I don't know.  I've known a few people who have dealt with adrenal insufficiency/burnout, but other than extreme fatigue and weight loss, none of them had symptoms as severe as his.  The fact it was sudden is also perplexing.  It makes me wonder whether some sort of infection has taken hold and is creating a host of cascading problems.  But the only way to find out is to keep searching for an answer.  Is your friend close to a metropolitan area where he can obtain another expert medical opinion?  Although the doctors he has seen have come up empty, it doesn't mean that an answer isn't out there.  

@elaineg

Have you considered lyme disease ? This looks like an infection, if it is not paraneoplastic syndrome. 

I agree with deetoo. Please seek a big hospital with bright medical minds, focused on research . The average doctor doesn't seem to be capable to solve this one. Go for the best, most inquisitive doctors. Seek the Dr House like mind. 

Sorry I could not help more. But know that you should never give up until you find a doctor that won't give up on him. I trust your heart and trust your soul. And in the darkness of this moment you shall be the light. 

Love

the beast

@thebeast

Lymes disease sounds promising. He did get a tick bite, but he thought he got over it. He has no insurance. All he has is VA. I know they aren't very good, but if we can give them a disease maybe they can do something.  My brother-in-law was in the army for 20 years, and he wouldn't  set foot in a VA hospital, but he had Tricare and didn't have to.

He thought he got over it without taking antibiotics?

 If he had had any symptoms after the bite then usually people don’t just get over it without three weeks of doxycycline.

Surely the VA can prescribe a course of doxy. Most of the treatment at this point is going to be antibiotics and a lot of alternative care like following an immune boosting diet — no sugar or alcohol for example and taking time each day for mild exercise and quiet time.   If it’s Lyme there is much to be done and most of it is not expensive but takes a focused lifestyle change.  

@jeanne-mayell

Well, I don't know what he meant by got over it. I know that I have removed 11 ticks from my body this year, but I've been OK. I even used Deet, and it didn't help. I called him and told him what everybody said. I'm not sure he believed me, but I'll keep after him. You wonder why so many ticks, but I go out and feed stray cats.

Thank you for telling me about doxycycline.

@elaineg,

So he got a tick bite.  Did they even test him for lyme?  And to reiterate Jeanne's comment, was he ever given a course of antibiotics?  I go to an internist who specializes in lyme, chronic inflammatory diseases (caused by mold, bacteria, parasites and other biotoxins), and autoimmune diseases.  People can have a host of crazy and potentially serious problems with undiagnosed and untreated lyme.  Believe me, I've met them.  I agree with Jeanne about the treatment. Something to keep in mind, though, is that the test for lyme can sometimes give you a false negative.  So many doctors go by symptoms (with his tick bite as a big clue) and they'll give you a course of doxycycline anyway.  I have a friend who had lyme and even had the classic bulls eye rash (which not everyone gets), but her test for lyme was inconclusive.  She had to insist that they give her the doxycycline.    She had to fight for her health.  She needed to be on the doxy for a long period of time (i.e., longer than 3 weeks), but it really helped her.  

If for some reason the VA can't or won't help him, is he in a position to spend a little money and see someone outside the VA who specializes in lyme?  The doxycycline shouldn't cost much, and as Jeanne mentioned, he can do things separately to boost his immune system.  But I'm hoping that the VA system can and will help him.

Weighing in on Lyme testing: Make sure they don't just do a "Western Blot" or even what's called an "ELISA" - blood needs to be sent to special labs, which are expensive, but it's the only way to be sure. One of those labs is called Igenex.

I have MANY people in my life with Lyme, and it's not curable but with significant lifestyle changes they are all doing ok. The ones that lose focus? They get things like encephalitis and end up in hospital, and have to re-focus efforts. Left untreated, Lyme is a long, slow death. It masquerades as so many other things, sometimes no one even knows it's the culprit. It can even cause strokes...

VA healthcare sucks, but it's better than nothing. There are some "magic words" to use to trick them into giving your friend some doxy (if it works, it means he has Lyme most likely, and then you can hold off the expensive testing). Those words are:

• I spend a lot of time in the woods
• I have removed many ticks from my body this year
• One of them was firmly attached
• The next day I had a red circular rash where it had bitten me
• I feel tired, my bones hurt a lot, I'm having trouble moving around and I have fevers that don't go away
• Other things have already been ruled out

@laura-f,  You are right about the Western Blot.  A percentage of lyme patients ended up seeing my doctor because they'd had the WB test and were told they didn't have lyme.

Great suggestions about using the "magic words" with the VA.  You've got to be forceful and often creative to receive the proper care.  

I would like to begin this particular post  by thanking @jeanne-mayell for creating this community.  

The last few days have been a bit of an emotional roller coaster and tonight even more so.  Nothing horrible, just well,  difficult and painful.  I am grateful that Jeanne has her heart centered meditation for us to access because my heart was truly in need of it tonight. The meditation helped center me a little. for that I am  grateful.  

When someone you love is going through a difficult time, it can affect you in many ways.I am absolutely heartbroken tonight,  for them and for the people who love them.   I even recognize I am heartbroken for myself, an odd thing to realize. I am not sure what to do next. 

@lovendures, I am so sorry for your pain.  And it's more difficult when we feel so powerless.  The most we can do is keep our hearts opened, and hold each other up in our collective sadness and grief.  And take it a day at a time.

I sense that I have been connecting to everyone’s pain in this community. It feels as if we’ve all gotten quiet or something … I can’t describe it.  It must be the overwhelming grief we are all experiencing.   Every day the news is more dark, inhumane and cruel.  Perhaps it was naïve of me to think this, but when we were seeing how bad things would get, I never believed it would get this bad.  Every part of my physical, emotional and spiritual being feels torn apart. 

I wish I could cry to release this grief -- I can't.  I think it's because if I start, I won't be able to stop.  The tears only come for me when I witness or hear about acts of kindness.   We need to recognize that kindness more -- it's all around us.  We should never lose hope.

I myself could do better with prayer and healing.  Sometimes despondency sets in  and I can't shake it.  I welcome the meditation on the 14^th.  Bless you, Jeanne, for making that available to us.

@lovendures

Praying for you and all you love and those who love them. When I go into other's aching hearts and pains, it is almost more than I can bare. I know how it is to love so much and want to do more and more and more.  

I pull back enough to focus on what I can do, who I can directly help and send prayers of great love to the others and call on the highest energies and powers to help them and help our world.

But my true heart's highest self has learned it's not ours to control. When one life is saved, one living is saved, one marriage is saved, when one life pain or challenge is alleviated, another wave hits and the butterfly wings of change affects someone else, something else. On and on.

We have predicted that terrible, terrible things would happen from each stage of every thing playing out in our lives. Then, it does and we think we can change it by doing this or that, giving this or that, taking onto ourselves this work, this giving, this bearing the pain, the load, the work. 

We put out one fire by any means,  another pops up and out somewhere else. Mankind creates and mankind destroys. We are all part of this pattern.

We are left with the greatest of all things  which is simply love. You and I and many, many others are keeping that force strong no matter what. We care about others as much as we care about ourselves. We give and give and give and it seems to get worse, not better . I know your anguish when we realize that we are not enough.  

Keep on loving and caring but know there is always more reasons and seasons and cycles and patterns at play. We are in a whirlwind now all of us in different stages and places. 

We pray for the highest good for all. And we share the highest light of all and then we pray that higher forces, energies and powers than our mere mortal selves can hold are guiding and helping and doing even when what is happening in our lives and all around are walking through or burning up in the fires, or drowning in the tears of loss and calamity .

I am here for and with you and I feel and  share great, great love for you and all you love too just as I do for everyone here, there, and everywhere.

My heart is with you. Love Endures...  

???

@lovendures You are such a loving force in our community.  Sending you love and surrounding you with light.  Sending also love and healing to those you love who concern you. 

@Lovendures, I'm sorry you and yours are having such a hard time. It is hard to watch loved ones having a difficult time or in pain and feeling helpless to do anything. Sometimes, just being there, listening, or helping them do normal or routine things is the biggest help. No matter what it is, you will get through it. Start small, taking things minute by minute, then hour by hour, day by day and so on. Keep the faith, take a deep breath and surround yourself with love and light when things feel overwhelming, and tap into that place that tells you it will be ok. Hugs. 

I would like to thank everyone for there beautiful words and love sent to me and to those I care for and have been worried about.  You don't know how much it means to me that you would take the time to send words of compassion and care our way.  I feel so blessed to have a place to be able to ask for help and then receive so much more than I could ever expect.  Thank you for your time and love.