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Esteemed Contributor
Posts: 6,177
Registered: ‎11-15-2011

Re: My daughter who has chronic Lyme Disease

On this morning's news they were talking about finding Lyme ticks in the National Parks.  

 

Maybe this will help bring Lyme disease into the spotlight and they will take action.

 

P.S. Yes, Lilac, my surgery cured my diverticulitis.  Luckily it was only in a small area and was removed.

Respected Contributor
Posts: 2,905
Registered: ‎06-23-2014

Re: My daughter who has chronic Lyme Disease


@151949 wrote:

@Reba055 wrote:

@goldensrbest wrote:

I just am wondering if perhaps the doctor today might admit her to the hospital, if doctors want to they can really get things going,i know they did for my husband.


@goldensrbest  Good luck with that one. I have spinal issues, all kinds of weird reactions to meds, major stomach issues, and several other things. Nothing is working well for me right now. I have been bounced all over. I have pretty much begged to be admitted to get it all sorted out (and trust me, I would hate it). I even ended up in the ER with very high BP, severe pain, and dehydration. The ER doc said insurance would not pay for me to be admitted. I just had the same type episode a few days ago.  Never got any answers from before.  I worked in hospitals for years. They used to admit you, get their heads together and figure out what was going on. Quickly. Not anymore. 

 

So much has changed in the past few years. I've had relatives with severe fractures/shattered bones/spine that were sent home to wait to see a specialist in a week to ten days. It's crazy. Unless you are flat out dying or in a life threatening situation I don't think you are hospitalized. It's shameful in this country of plenty that they have allowed this to happen. 


 

 

OH PLEASE -- no one was sent home with severe fractures or shattered bones. Exaggerate much!?!?


@151949 I beg your pardon??  This is no exaggeration. This happened just six weeks ago. Shattered shoulder (which is extremely painful).  Her daughter and husband had to move in so he could lift her and carry her to the bathroom! She was told the only way to be admitted was to pay for it!

 

Another relative has severe lower back and hip issues and has had multiple surgeries. Her hip has been operated on so many times and her bones are so brittle that it doesn't hold. Given IV pain meds in the ER, sent home to follow up with her surgeon even though the hip was out of place. 

 

Another (young) relative fell off a ladder and broke both ankles (one was shattered). Stabilized and sent home with pain meds. . Still hasn't had surgery on the one that wasn't as bad. 

 

These are in three different cities so I don't think it's a regional thing. 

Respected Contributor
Posts: 2,640
Registered: ‎05-13-2010

Re: My daughter who has chronic Lyme Disease

An alternative to caring for a patient at home is going to a basic nursing home.  It costs less than a hospital.

Respected Contributor
Posts: 2,640
Registered: ‎05-13-2010

Re: My daughter who has chronic Lyme Disease

@LilacTree  Give all your daughters the name of the King of Prussia dr. from @haddon.  Your daughters may want to see him if the current treatment doesn't work.  This could be a situation that needs many years of treatment.

.

 

Regular Contributor
Posts: 202
Registered: ‎03-29-2016

Re: My daughter who has chronic Lyme Disease


@LilacTree wrote:

@BohemianGal wrote:

@LilacTree..

 

I just saw the thread you started a few days ago, and I want to say I am so very sorry for all you and your daughter's are going through.

 

Many don't understand chronic illness and the "toll" it takes on the person and their loved ones.  Unfortunately, I do all too well.

 

I believe seeing an infectious disease specialist is a good idea, and counseling would help as well.  I'm not "big" fan of  anti-depressants, as they've never agreed with me and have casued further problems, but I know they have helped others.

 

Personally, I've always felt as if I felt better "physically", I wouldn't be having anxiety or depression, as they were both "circumstancial" and a result of "loss of health and quality of life". 

 

Like you said, Lilac Tree,  and I agree 100%...How could she not be depressed, when her entire life has been stolen from her like a "thief in the night"?

 

As for other poster's who have voiced their opinions that you are an "enabler"...I don't agree.  She is your daughter, and terribly physically and emotionally ill right now. She is at "rock bottom".  Do they expect you to turn your back on your child (regardless of her age), and leave her on the street?!  

 

Lilac Tree, you are one of the most intelligent poster's I've seen here on the forums. That being said,  those who feel you are being "used or taken advantage of" by your daugher are clueless.

 

I know you realize that your daughter's actions and attitude toward you are not intentional, but due to the fact that she isn't thinking clearly becasue her brain function is IMPAIRED. She is exhausted, weak, in pain, and frightened beyond words. She feels her  life is hanging in the balance, and there is no help to be found.....Again, I can relate.

 

I see this situation from "both sides". The one of  being the "sick person" and the other of being a MOTHER who would never turn her back on a sick child. 

 

Also, I want to mention that IMO the stress and trauma of the divorce ,etc is at the "core" of the cause of the manifestation of this illness (which is real).  Therefore, I believe that in order for her to "regain her health" she needs to "reclaim her power".  This involves releasing all the emotions that are "eating away at her".  This can be done with a Reiki healer, hypnosis, guided imagery,  accupuncture, etc. ( I belive another poster mentioned some of this). Healing takes place from "the inside out".  Once she begins to clear the emotional traumas, the physical body will respond...It's like peeling an onion layer by layer...but it's the only way to true "healing and wholeness"...and the way back to health.  

 

You and your daugther(s) will be in my thoughts and prayers...

 

Blessings and Love, 

Bohemian GalHeart


@BohemianGal

BG, this post deserves more than a "heart."  Did I already respond to this, as I can't seem to find it.  

 

Anyway, you describe the dynamics of my daughter's and my issues so well I almost feel as though you have been here watching.  Of course I cannot ever abandon her, because I know what caused it, and the insult of this type of illness is the proverbial straw that has broken the camel's back.  She is broken and I only hope that she can manage to put herself together again.  We are here to help.  She has to do the work even though she believes her brain is not within her control.

 

We will try to lead her there, but she is ultimately responsible to work hard to restore her life.  It is not acceptable that she crawls into bed and pulls the covers over her head, wears an eye mask and ear plugs to keep the world out.

I just knocked on her bedroom door and walked in quietly to see if she is up, as my youngest daughter will be here shortly to take her to her PCP doctor's appointment.  When she comes back, I will try to talk to her about what I can do to help with the legal issues that remain, that her ex refuses to comply with.  If we can get those issues solved and out of the way, we will be halfway there.  And no, she was not nice to me.  Not nasty, just annoyed.

 

As you said, we have to peel the layers of the onion away, one by one, and be very quietly and calmly committed to making her do the things she runs from.  She has already proven she can't do it by herself.  So if she says "leave me alone," we have to say "No!"  A lot of that will fall on me, since I'm the one who lives with her. 

 

Thank you for your thoughts and understanding.

 

@LilacTree...

Thank you for your response, and no apoloiges necessary for the "heart"..You are overwhelmed, and I wouldn't expect you to respond in length to every poster, regardless of the content of their post.

 

I agree with you 100% regarding your daughter needing to take "responsibilty" for her life and "do the work" she is capable of doing at any given time. (With love and support from her family, which she is blessed to have). 

 

I have struggled terribly with chronic illness for 35 years, and at the moment I am extremely fragile and "fighting for my life". Many days I feel like "giving up". However, I feel I owe it to myself, and my family to do the very best I can at every given time. That's all any of us should be expected to do..

 

Again, my thoughts and prayers will be with your family.

 

All the Best...

Bohemian GalHeart

 

 

 

Honored Contributor
Posts: 11,040
Registered: ‎03-09-2010

Re: My daughter who has chronic Lyme Disease


@KarenQVC wrote:

@LilacTree@  Give all your daughters the name of the King of Prussia dr. from @haddon.  Your daughters may want to see him if the current treatment doesn't work.  This could be a situation that needs many years of treatment.

.

 


This!

 

If they don't take insurance, set up a GoFundMe page.  I'll give money!

Contributor
Posts: 48
Registered: ‎04-18-2010

Re: My daughter who has chronic Lyme Disease

My 34 year old son has Chronic Lyme disease too. I know what you are going through. The CDC and mainstream medcal doctors do not recognize chronic lyme. Shame on them! Nothing has helped my son. Lyme literate drs. are hard to find and they haven't helped either. He is in constant pain, doesn't sleep well. It is such a horrible disease
Regular Contributor
Posts: 202
Registered: ‎03-29-2016

Re: My daughter who has chronic Lyme Disease - there is hope


@LorieG wrote:

I have severe chronic fatigue after being poisoned. Have been to numerous

specialists at the best hospitals...Stanforf, Mayo etc

finally found Dr D Kaufman in my view ca.  ..best MD  in the world

he does test for Lyme..I was tested..he will find out for sure if she does have it

or what combination of viruses she has and he can treat them...after only 2 months

of treatment I feel better...he was one of the original MD s who discovered HIV 

i know what it is like to feel like you are near death and people think you are crazy, lazy etc

he is the real,deal....and I am not a fan of the medical profession

he loves a challenge and will find out what she has

God bless and good luck...there is hope


@LorieG....

 I've been ill with CFS/ ME and Multiple Chemical Sensitivies for almost 35 years. Over the past 8 years my health has been in a steady and rapid decline (I'm almost 56). My weight is down to 85 lbs and my condtion is critical.  Like you, I've been to "all the best doctors, clinics, etc  I've tried just about every conventional and alternative therapies available and "then some"... The last Doctor I saw 18 months ago was Dr. Mark Hyman, who has a clinic in MA. He is the Founding Fatther of Functional Medicine, and has written MANY Best Selling books. He has also appeard on Dr. Oz, Public Televison, etc. While he very specifically diagnosed all my problems thoroughly, as well as the "core" of the disease process and manifestation, the treatment plan he set out was one I didn't feel my body could tolerate without "killing me", so after seeing him only 3 times, I stopped going. (I had to "go with my gut", although I know he is a "top notch Physician).

I am now seeing an old "hometown" Naturopath along with my PCP, and trying some "gentle" homeopathic treatments that I feel I can tolerate without doing "further harm"..trying to stay postive, and praying for the best outcome. 

 

Please, if  you would, give me the full name, address, and phone number of the physician who treated you succsssfully for the CFS. I Googled the name above, but several differnt doctors "pop up".  I would like to research him further. If he is located on  the East Coast, I may be able to see him, but if he is located in CA, there is no possibilty I could get there as I'm too weak to travel that distance (I live in CT).  Either way, I would like the information and perhaps do a phone consult if he agrees....I am still holding on to "hope" that even after all these years healing is possible....I so much want to "live" again.....My physical body is weak, but my spirit is still very much "alive"..

 

Many Thanks...Bohemian GalHeart

 

@LilacTree...Perhaps he could help your daughter as well??

 

Honored Contributor
Posts: 10,270
Registered: ‎03-09-2010

Re: My daughter who has chronic Lyme Disease


@LilacTree wrote:

@CelticCrafter wrote:

@LilacTree wrote:

PCP told my daughter yesterday that the last specialists she should see are infectious disease doctors . . . that they are the most aggressive of all specialists who believe chronic Lyme does not exist and they will not treat her for it.

 

I intend to verify this.

 

She is going to be put on treatments (the nature of which were not explained to me) that cost several hundred dollars a week.  Her insurance will not cover these treatments.  And she is still going to see the neurologist to rule out diseases like meningitis. 

 

The PCP plans to work with her Lyme doctor. 


An infectious disease doctor would probably the last person on earth I would ever trust my life to...

My sister was admitted to the hospital with severe intestinal problems and I said to them, humor me, have them test for c.Diff and no one would listen - 10 days later guess what they found...their incompentence almost cost her her life...


@CelticCrafter

Yes, what I am reading is not very encouraging either.  They are too linked in with the CDC, the enemy of chronic Lyme. 


Yes we found out early on that the infectious disease doctors were terrible and very arrogant when asking about chronic Lyme even though my husband had tested positive for it.

 

Honestly I don't care what they want to call it just make him feel better!!  ....but of course they couldn't. 

Honored Contributor
Posts: 8,199
Registered: ‎06-10-2010

Re: My daughter who has chronic Lyme Disease

[ Edited ]

I feel bad for your situation and for your daughter. These things are so very difficult and can seem insurmountable.  Although my experience with this is a little different and concerned my elderly Dad....I think that some of it could apply to your daughters situation. It  became so bad that my mother was calling me crying all the time and her mind and body were being greatly affected by  her situation which really became the whole families situation.  I think had we not done something she wouldn't be here today. With her being in her 80's, we thought it might kill her if something wasn't done and, of course, we wanted what was best for Dad, too. 

 

After about 10 major operations and several minor ones.... Dad became more and more weak and depressed.  He refused to go to a psychiatrist. We tried to get him to one for 6 years.  After more than dozens of runs to the emergency room, a faked suicide attempt, flushing his meds down the toilet, and threatening to jump into a pond....and other things too numerous to mention....a doctor in the emergency room suggested someone get "power of attorney" over him.  He was mad at mom and wouldn't give it to her (even though they have had a long and loving relationship....69 years in April!) but he did give it to my sister and we had him committed to a facility to run him through all sorts of tests.  Yes, he was terribly angry at us and yes we all cried our hearts out.  To do this to someone you love is gut-wrenching. 

 

He was evaluated and found to have  dementia.  What they found, however, was the depression was much worse than the dementia and once they got the depression under control......he started going back to the Dad I knew and he wanted to get better and live again. The depression was so bad that it affected his mind to the point they thought he had stage 3 dementia, when, in reality, it was only stage one.  I tell you that...... to let you know that depression can cause stress so terrible to the body that it makes things much worse than they seem and literally adds to the pain.  Your daughter has suffered enough pain and God knows she doesn't need more. Sometimes the proper medications and physical therapy and rehab just gives a person their will to live again  so they can fight back.  In the long run, as we look back, it was the best thing we could have done for him.  It gave him a good 4 yrs. more and we are with him a lot.  Sadly he had to have a back operation that failed and he has to have 24/7 care so mom couldn't bring him home.  Even so, with all the physical therapy....they kept him up and walking for 4 yrs.  He is in long term care but we have seen many people come and go who were there short term and medicaid paid for it.   He has a TV with a DVD player, he is visited by his family.  We go to music concerts and outdoor cookouts, they have a movie room,etc...and much more things for patients to do.  They are encouraged to get back into life and do things....as much as their abilities will allow.

 

It appears that Dad might not be here much longer....he is 89 but he has had his family around him, met some wonderful people, and been to more concerts and cook outs and been kept relatively pain free.  Most nursing homes offer quite a few activities and if the patient can set up in a wheel chair....they go and their families are invited, too.

These past few months Dad has been through a lot and the doctors think he may be approaching his last days.  We never could have kept him as comfortable at home as they can at the nursing home.  We see people come in for short term care and leave the better for it all the time. Dad, of course, had to be put in longterm care. There is always a social worker and a psychiatrist on staff.  I hope and pray you can find help soon.  I think it could benefit everyone. Medicaid had paid for everything.  Also there is usually a doctor and NP's assigned to the home where they can all get together and figure out a treatment program. 

 

I know all situations are different but just wanted to share our experience in hopes it might be of some use to you.