lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Well most of you are undoubtedly bored by my ramblings over my 19 year old..But I am so unsure of what to do next..
I have one of the best llmd's out there in my opinion, so that is not the issue...It is my daughter thinking she knows it all and will not take meds or most of her supplements..And then her reaction, when she is compliant, is very dangerous.
Today she is crying because she feels so sick..She admitted that yes, she has now started taking some of the doxy but her systemic yeast is horrible..and her OCD is very bad.
And to her credit, I do not want to make a lot of excuses,but she herxes with anything..And her herx's are often suicide attempts so momma always walks on egg shells.
She also has all of the bad genes that make this all easier to get and harder to eliminate.
Her blood sugars are rarely under control.
Her OCD is also raging..And she just asked me if she can have the vagus nerve surgery..Since it is a minimum of $60,000 and we are still paying off her year and a half ago's ect's and all the other kind Drs bills from those that poked their nose in the door..I do not see how we can afford it.
So I am in need of a magic pill that she will take that will not make her herx and not make the yeast worse..And I think I am just blowing off steam because if it existed, the llmd would have tried it...
And I am able to get some Mg into her as well as some probiotics.
Has anyone tried rife on anyone with the psychiatric lyme/bart? ANd if so , are the herx's tolerable? ANd I am talking incapacitated, in pain and depressed and wanting to die..This is not the run of the mill herx..
Also thanks to jbiral and others that have made some suggestions.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
OH man! I'm so sorry to hear this. I know the worry must be killing you!!
I think Rife would be a very good idea. I've never herxed real hard on it, but I was 85% well when I started it.
I think it is something you could go very slowly with and the herxing would be much less than with abx.
She may be "herxing" that hard BECAUSE of her candida problem!!! Any way you can get her to follow a good diet???
You can also use Rife for candida and other things too!! So that's a plus!
Mine only cost $450, but there are many others out there, ranging in price from $450 to $3,000 or more.
Hang in there, Mom!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I pm'd you
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thnaks so much..I am still hanging in there Tutu but the road is very bumpy..
There is a rife distributor about an hour away so I may take a trip tomorrow am while she sleeps..
Hope they take plastic..
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
lmt, my heart goes out to you when you & daughter are in such pain and especially since she is constantly 24/7 suicidal!
Has you ever contacted Dr. F's office since he's a PSYCHIATRATRIC, LLMD? That's my only thought...all new, unknown territory.
Keeping you/yours in my thoughts/prayers daily LMT. Bettyg
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lymemomtooo
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Member # 5396
posted
Betty, my daughter's past llpsych had attempted to have her admitted to the clinic at Columbia but I was told that when she asked about treating the lyme also,...that he did not get back to her..In her thoughts this implied that Dr F would not permit my daughter to be in there for lyme since she was not CDC positive.
A real bummer for me, I can assure you..
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
LMT, Boy, am I disgusted after reading the response you got or didn't get from Columbia where OUR new CHRONIC LYME RESEARCH CENTER will be opening! I am enraged on that even.
Please contact Pat Smith and Tincup about your situation please. If they are not aware of it, they need to be. Could they intercede on behalf of you/daughter? I sincerely hope so!!!
This needs to be corrected NOW and would offer assistance to folks like your daughter when it OFFICIALLY OPENS !
Time for us lymies to be sounding off to situations like yours! Thanks for sharing LMT to the lack of responding to your special need! Bettyg
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Lymemomtoo you wrote - Betty, my daughter's past llpsych had attempted to have her admitted to the clinic at Columbia but I was told that when she asked about treating the lyme also,...that he did not get back to her..In her thoughts this implied that Dr F would not permit my daughter to be in there for lyme since she was not CDC positive.
A lot of 'he said/she said' being made here. Why not call Dr. Fallon yourself? Once I got Dr. Fallon on the phone and explained my situation I got help for my son very quickly.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Acorn/Betty..Sorry. Not trying to trash Dr F or Columbia..It is a wonderful tool for those that can get in..
My daughter could have gone to the general psych place and had a Dr work with her..No guarantee it would have been Dr. F..But due to the situation with NY and the previous era of witch hunts against llmd's they needed a positive CDC for her to get F's /lyme help.
So I was left with, yes, she can go..But not have lyme meds or treatment and be in the psych ward area..Her llmd said she must have the lyme meds.
WEll, if I had to choose between the local psych ward as opposed to one in NY City it was a no brainer to a mom with an immature teen.
I have no ill feelings and I have even helped to raise money for it thru the REading fund raiser.But Until the politics change....
ANd now I have a 19 year old that would never go to NY unless it was to go to Saks or Macy's.
Also Dr V.S was doing all of the negotiating and I have faith that she did her best..She wanted to get my daughter in..
I have also heard good things about Dr. B..I have heard him speak..He would see my daughter but she does not agree to go to any psych..
I am not trying to come up with excuses..You all have had some good suggestions..It is just difficult when the PARENT is no longer in control and the laws say that an 18 year old can make her own decisions, even if they are stupid and may prove to be life threatening decisions..
I had even thought of getting an order giving us control of her medical decisions..Can't remember what it is called..But she is a smart/suicidal teen..She has ways of trying to kill herself that most people would not dream of..
My life is taking care of her needs and walking on egg shells so she does not go off..
I had thought that 2 Sundays ago she would be admitted to the psych ward. She had been self mutilating and cut her wrist down to the tendons. After the hand surgeon had tested reflexes and stitched her up, I went to call my husband..
While I was gone, they decided to discharge her..She had told them that she did not need to talk to crisis intervention..They never talked to me because I no longer have any say..They were dealing with 3 bad wrecks and helicopters coming in every 10 minutes and no beds..So guess they looked at her records and decided this is an easy bed to free up..
This is why I am always telling posters with kids to get them well or in remission before they turn 18..It is a very difficult position for a mom to be in and not be able to do anything.
I have even talked to a dr about forcing her to take meds and was told she can have you arrested.
So I ask for a magic pill...
Posts: 2360 | From SE PA | Registered: Mar 2004
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
I am so sorry for ya Lyme Mom. I guess w/ any teen,a magic pill would help all of us.
Having a Lyme teen,well,that would be a huge weight.I hope you can find some relief.Your teen is lucky to have you.
posted
LMT, you are thinking about a DURABLE MEDICAL POWER OF ATTORYNEY form...
Wow, what a complicated situation you have. You've done everything a caring Mom could do; tried every stop. My best to you on this tremendous load to you. Bettyg
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..have you ever talked to Orion (Bev) about ozone tent therapy?
Maybe it would be something your daughter would be interested in? I realize at her age, it must be something she will take to. Bev's daughter did very well with this.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I'm sorry to hear about your daughter. Tell her to hang in there that she's not alone.
If she's not on antidepressants I'd make her a cup of St. John's Wort and Kava Kava tea. 1 tea bag each per cup. If she's on antidepressants skip the St. John's Wort.
Also, I'd do as hot a bath as she can stand for as long as she can stand with Epsom salt to boost her immune system and get rid of some of the toxins.
Drinking plenty of water, resting and some fresh air would help too.
I have a 22 year old step daughter and feel for you about that know-it-all stage.
We were probably the same exact way at their age. How depressing!!
Hang in there Lymemomtoo!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo- I have most of Bev's sauna info but my daughter previously had a super dooper air filter that ended up emitting ozone odors..She hated it, so when I mentioned the tent, she was unwilling to even try..I will talk to her about it again..Thanks..
aklnwlf, You have not been around for awhile..Things ok?
I liked the tea idea..I can get tea in her..But she is still taking one psych med..Only thing she takes regularly except anti yeast stuff and an occasional vitamin or mineral..
Marnie sent so much stuff on Mg and I was able to get her to take a bath once..Her OCD is so bad that she takes 3 showers a day and goes thru about 12 towels a day..She will no longer sit in the tub because I take baths..And heaven forbid, she catches something from me..She is so anal and psychiatric about the main bathroom that her father no longer even uses it..
And yes, I was not an easy teen..But not sure I would be alive if this had be me and my mom dealing with this..At the least, I would have been on the streets..
Posts: 2360 | From SE PA | Registered: Mar 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Lymemom,
You poor thing. It is amazing how you keep going and fighting for your daughter. Let's hope the dioxy can get that germ load down to where it will help. Says something that she is taking it about the denial not being complete.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I continue to thank all of you for your suggestions and wonderful support..I will get to the pm's as soon as I finish with helping with my "teacher" daughters class party..
Posts: 2360 | From SE PA | Registered: Mar 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Tried to PM you and it's full. Just wanted to let you know that my daughter also suffers with OCD. It's gotten a weeee bit better on anti-depressant/anxiety, Rifampin and counseling.
I thought I was running a hotel for a while. Every day the towel load would be enourmous. Not to mentioned paper towels and bathroom cleaner!
Won't go into the details, but it must be torture for her and it doesn't help with healing either.
All understanding and prayers. Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thanks Kelmo..So sorry your child is also having to deal with this..Yes, it is hard to figure how one person can go thru 12 towels most days..And giant rolls of paper towels and pre-moistened cleaner wipes..
Well, the list could go on..
Someone has to figure this out and save these kids..And soon, or so I pray..
I did do a minor bit of deleting in my pm's sorry..I often go back and re-read the suggestions..They have been a God send..Guess I need to figure out better storage..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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My heart is breaking for the two of you. I am continually touched at the devotion of parents to their children. How lucky your daughter is to have you.
I have an 18 year old daughter with lyme, various mild learning disabilities and was assaulted as a young girl. There have been many chapters to this story but after this incident, she became very destructive, violent and angry. Sometimes it was all I could do to keep her safe.
We did counseling for a while which was helpful but I found that she needed a break from all the work that her little brain was doing. With the help of a hypnotherapist, she taught me how to talk to my daughter when she slept.
I basically gave her positive suggestions, affirmations, reassurance during her sleep. She and I have always been very connected so I would just sit by her and send her these thoughts and sometimes say them outloud. We eventually broke some of the negative energy that surrounds these kinds of incidents and the destructiveness started to lift.
If this sounds too new age, I think it could be adapted to fit your spirituality. I would be happy to share some of my affirmations with you.
From being around a teenagers, I know that they can be so defiant and unreceptive to what we say to them consciously especially to their mothers.
I'm hoping that you have someone to help support you since you have to give so much energy to your daughter.
Hang in there.
Posts: 460 | From Illinois | Registered: Aug 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
CC, I am all ears..Actually I have made many stabs at this while she has slept but she awakens easily and is angry and wants to know why I am in her room when she needs her sleep..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Yes, I can understand that your daughter probably doesn't want you in her room as mine doesn't either.
I am gonna wade through my lyme brain here and pull up some of the stuff we did. The hypnotherapist stressed several things one of which was to be very clear in your intent. Clients coming to her were energetically "inviting" her to help whereas when we work on children who haven't specifically asked we should somehow ask their permission.
I kind of said prayers for a day or so stating that I wanted to help my daughter, that it was out of love not manipulation and that I needed permission to be invited to do so. You know your daughter and will get a sense if this is the right thing to do or not.
I'm thinking that perhaps just sending thoughts during the day while you are with her of how she is loving herself more, taking good care of herself, how she is safe, etc. The hypno said to state things in the positive. Ex. " You are learning to love yourself more and more each day" NOT "You are learning to stop being destructive to your body". She said not to give the negative any power when using suggestions.
Another thing that worked well later when my daughter was older was I would massage her back , legs, feet or whatever she would let me touch. The whole time I was rubbing I was saying affirmations. I was a massage therapist for over 10 years before I got sick and I found that folks were so receptive to positive suggestion when they were being massaged.
Gosh, I just re-read this and am wondering if this makes any sense. I guess living with a child who is hurting and you don't know what to do for them is what really doesn't make sense.
Anyway, use whatever works or makes sense to you. I think as her parent, you have the greatest intuition of all.
Let me know if you want more info, I don't want to be preachy.
Posts: 460 | From Illinois | Registered: Aug 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thanks CC..Some very good ideas..Currently, she does not even let me touch her. She yells and pulls away..
She is standing in her room at the moment..She has taken her second shower of the day and now will not sit anywhere..It will be a long stand..I do not take her to work until 6.
We were to go to the orthodontist but since it is a hours drive and she was still in the shower with only 50 minutes to go, I had to call and reschedule..
So she has now asked me to take her somewhere else so she doesn't waste time standing..Well, I am sorry but I had tried for 2 hours to get her to get up and get ready, so she will perhaps be bored..But maybe it will wake her up..
Posts: 2360 | From SE PA | Registered: Mar 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Also a note to parents of cutters..Some of you have emailed or pm'ed me..A friend who has lyme and is a social worker/therapist ,said that kids can wear rubber bands, just not too tight and when they feel the stress and the need to cut, that they can get release from pulling back on the rubber band and letting it strike their arm or wrist...
She says it is the release of the tension and feeling some pain that let's them know they are still alive..
Hope this helps..
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
LMT, you mentioned "storage" ideas...
May I suggest you KEEP/FILE the pms in your INBOX FILE FOLDER system? Mine has room for 200 files there.
I was putting some folks as individuals but finally set up one up: lymenetfriends and file in there 80% of the time.
DELETE YOUR PM ENTRY; it's a duplicate!
your FILED HOME EMAIL FOLDER has the link to your PM here for any comments you sent back to folks...you can get from there.
I, too, am praying and affirming for you and your daughter. I've read about several other moms who are dealing with issues same as yours. Mine pales in comparison to what you are dealing with.
I will ask my chiro/acupuncturist/NAET person about what might help in your situation. That certainly presents an obstacle when your daughter doesn't want to be touched.
Would essential oils of any kind help? I'm sure by this point, you have tried most of the suggestions here. Is there anything that soothes her? Friends? Computer? Music?
I think with all that you are going through that you can ramble here anytime you need to if that is what gets you through.
Hang in there and PM me anytime.
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
i can't offer much -- just as a mom with kids who have been sick and keeping close to others with sick children who are now adults, i want you to know you are not alone in your frustration -- and the pain you feel which is as deep as the love you have. try to get some respite for you. a healthy kid needs a healthy mom. wishing only good things....
-------------------- spiral Posts: 20 | From hvny | Registered: May 2006
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posted
Someone else may have already suggested this, squeeze the juice of a fresh lemon into a glass and drink it with a straw (to protect tooth enamel). Do NOT add sugar or water, just drink the straight FRESH lemon juice. Helps with herxes for almost everyone. Kay www.lymesite.comPosts: 195 | From MA | Registered: Oct 2000
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thanks for the support!!..She is to have a spect scan next week so hope it can determine some of the problem..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Kay, I like your website...I got lost in there for a while and found some good stuff. Thanks!
posted
LMT-Keep us posted on your daughter's progress if it isn't too taxing for you.
We're interested and care what's going on.
Posts: 460 | From Illinois | Registered: Aug 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
cc,I just continue to keep my fingers crosssed..She is taking Diflucan but refuses to take the IM Bacilin..
I am always asking about her blood sugars and she told me last night that it was high..I asked how high and she said she wasn't sure. She had not tested in over 2 months..
She is supposed to test 4 times a day. Makes me a bit sick with worry..She has the tools to get better and is too stubborn to use them.
Posts: 2360 | From SE PA | Registered: Mar 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I don't want to sound alarmist, but some good friends in my life saw that I was in danger, and took me to the hospital. I just couldn't think clearly, and was slowly dying.
Sometimes, our love for someone means saving them from themselves. Is there a good hospital on your plan?
She may need more than mom to come alongside and guide her to help. Find people she trusts. Even if it's one other. Then have a plan
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Lyme Mom, My son became very ill at age 14. It was a nightmarish situation, very similar to what your going through. To look at him now you'd never know he was sick a day in his life. Children get better, they make it back and your daughter will as well. Never lose hope.
It's imperative that you medicate to relieve the symptoms while their being treated. There is no easy way around herx's but meds to relieve the symptoms. My son told us often that he would not go on if there was no hope. I'd pray nightly for God to give me this disease instead of him.
My wife moved a bed into his bedroom and slept there nightly for 7 months. We always feared him harming himself in the middle of the night.
Feel free to PM me and I'll provide my e-mail. I talk to many parents on a regular basis that have teenagers that are very ill. Perhaps, her making contact with these other children will help her and she'll realize she's not battling this disease in a vacuum. God Bless.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Kelmo, I would have her in the best facility out there if I could get her to agree..I would mortgage everything I have..
She was in the ER 3 weeks ago and was depressed and had a life threatening cut and while I made a phone call they asked her if she wanted to see someone from Crisis Intervention and she said no, so they got her discharge papers.
I was so disappointed but the psych ward locally has never helped her. Just given her a time away from home to maybe think.
I do not think I can get medical power of attorney for 2 reasons..First one is she is very smart, creative and while she could (p) off the Pope, she could also have him eating out of her hands. She knows just what to say when she has to..
Second one and my most worrisome one..It could save her life by getting her temporarily committed somewhere, but where?, but if it didn't work, then she would be back home more depressed than ever and angrier..We live on eggshells daily around here..I know she would make an attempt to end it all.
ANd I know it always seems like I am ignoring everyone's help, I take everyone bit of info to heart and ponder it all..
That is pretty much why I asked for a magic pill..There are few viable options..I constantly pray for a miracle..
I am hoping that next weeks spect scan will show something..NOt that you want your kid so sick..But if it stares back at her, she just might not be able to ignore her medical issues.
Posts: 2360 | From SE PA | Registered: Mar 2004
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