Well I have been around for awhile I post here and there but I do go on here faithfully, Anyways my daughter is 21 and has been sick since she was 12 didn't find out until she was 16 that she had lyme,babs and bart.
She has had IV twice, been on so many oral combo's I can't even tell you, now she is receiving IVIG and being treated for Bart with Rifampin, 300mg daily, she is completely bedridden and in so much pain I can't even explain I did start her on chlorella and milk thistle last week, but I haven't seen any change, she has been to some of the best LLMD including Dr J and Dr R and now she has a LL Neuro who I think is wonderful, her PCP is not LL at all so the pain meds are very limited I mean limited, I am trying the best I can to get her well, and I just can't no matter what.
Two weeks ago she attempted sucide, I had no choice but to put her in a hospital, (her response to me is please Mom just let me die, my heart goes out to her because I know she has suffered way too long and deserves to be free of pain and suffering, but I am selfish because I will be lost without her, she is my everything)
We live in a house where no one believes us, but we have to stay put in order for us to receive the treatments she and I need, I also have lyme/bart, but am not as bad as her.
My sister called me this AM and we were talking (by the way she has lyme/bart/babs, undiagnosed for 30 years, went through 18 mths on meds and gave up) she said that I was killing my daughter by putting her through the treatments, I got really angry and said what should I do if you know so much, she said STOP ALL TREATMENTS YOUR KILLING MY NIECE, well my daughter is so so sick I would sometime compare her to Mandy on the movie Under my Skin.
Anyone else out there feel completely useless and doesn't know where to turn, IS ALL THIS REALLY FOR NOTHING, SHOULD I REALLY JUST GIVE UP!!!!!!
I LOVE HER MORE THAN THE SUNSHINE BUT CAN'T STAND IT ANY LONGER NO ONE BELIEVE IN IT AND REALLY NO ONE CAN REALLY EVER BEAT IT
Posted by Dogsandcats (Member # 28544) on :
Ooh, that just breaks my heart for you. I know as a mom we will do anything for our children and take on all their illness if we could.
It is hard enough for me to treat myself for Lyme, nevertheless, my children. Can either the PCP or Neurological doc reassure you?
Hold on, we are here for you. God Bless
Posted by randibear (Member # 11290) on :
i can understand totally. i knew my sisters were not treating my mother but since i didn't live there i could not complain.
i try to talk to my one sister who has ra, but she absolutely refuses to listen to this "hypochrondriac", so i shut up. you can lead a horse to water but you can't make it drink.
no one can walk in your shoes. simply say you are doing what is best for you and your daughter, period. then don't discuss it further. only you can make these decisions.
you are not killing your daughter. what treatment is she on? abx? buhner? is she doing detox?
i'm sure many other knowledgeable people here can chime in.
Posted by baileypup (Member # 22824) on :
Mrs. Scampi, my heart breaks for you. First of all, don't let anyone tell you that you are harming your daughter. You are fighting for her life!
What do the LLMD's say is keeping her from improving? My thought is, if you've been at this for so long, and nothing is helping, then something needs to change. Is she detoxing? Has she tried IV glutathione? Most often it's the cytokins and toxins that make you sick, more than the treatment.
Ultimately, you need to follow your instincts. It sounds like you've tried the "best" of many things, but they aren't working. It might be time to step back and reaccess what is working and what is not.
My prayers are with you and your daughter.
Posted by nefferdun (Member # 20157) on :
I really feel badly for you and your daughter. You are fighting for her life and it is terrible that ignorant people accuse you of harming her. It is best not to talk to them.
I agree that IV gluathionine might help her detox so she does not have so much pain. Dr. B said he has seen it work in minutes in some patients. There are naturopathic doctors that can give it as well. You could also try IV alpha lipoic acid for detox.
As you are also sick, it is hard for you to keep it together and stay optimistic for both of you. I wish you could find a lyme support group. It would help both of you to have people close by to meet with and call when necessary, especially when your family is so negative.
If the Rifampin does not help, maybe Bactrim DS would. It was very helpful for me. Most of my bart is gone now.
Don't say, "no one can really ever beat it" because that is not true. We all get discouraged but many people that were sick for decades are completely well now and most of us on lymenet are a lot better. You just have to find out what works for you and your daughter and never give up.
Bart did not cause a lot of pain for me - except burning in my shins. Is there any chance it could be another infections coming out like babesia? Depression is a big symptom. It caused aching in my body and cramps. It is so hard to figure things out.
Posted by randibear (Member # 11290) on :
just thought of something that really might make her feel better. the epsom salts and hydrogen peroxide baths in sort of warm water for about 20 minutes. no radios, just peace and quiet.
Posted by BoxerMom (Member # 25251) on :
First of all, DO NOT blame yourself for your daughter's suicide attempt, or your sister's irrational and hostile comment.
I assure you this is not for nothing. People do get well. You are doing everything you can to save your daughter's life, and your own, too.
I don't want to tell you what treatment decisions to make. You have good docs. But I will share my experiences.
I was completely suicidal for the first year that I treated for Babesia. I was bottomed out with depression, herxing my butt off, and did not think my life would ever change. My husband was scared for my life. But I persevered, because I wanted to be rid of these infections and get my life back.
Most of my pain was in my hips and my head. Deep, excruciating hip pain made it difficult to walk. I could not lie on my side, either. I did have some pain and weakness in my thighs, but nothing disabling, like in my hips. The headaches were constant.
I know many Babesia patients who are disabled by their pain. They are on pain meds, mood meds, sleep meds, brain meds...the whole gamut.
I don't know any Bart patients who need this amount of Rx support. For me, like nefferdun, Bart mostly caused pain in my long bones. Bartonella quintana was called "bone-break fever" for that reason. I think it causes swelling of the periosteum, the connective tissue that surrounds the bones.
But deep bone pain is more often Babesia. It can live in the bone marrow. Muscle pain, too. It takes over the tiny capillaries all over our bodies, causing obscene amounts of inflammation.
Do make sure your daughter is adequately medicated for her pain. I hope the LL Neuro will take care of that.
Your daughter may be undertreated for Babesia. The clinical picture of Babesia is still emerging. When I started treatment in 2008, all the Lyme docs still thought Babs was pretty easy to eradicate. HA!
Many of us on Lymenet have relapsed with Babesia. It is one tenacious pathogen. And, like it's cousin, Malaria, it becomes resistant to treatments.
I know you're seeing the best docs, but they have super busy practices with super sick patients. They do complex decision-making all day. They aren't going to catch everything.
We all feel like giving up sometimes. (It sounds like your sister did give up. Don't let her decision influence you. It was her decision.) But we keep going.
I know you will, too. I hope you and your daughter can find some relief soon.
Much love, BoxerMom
Posted by sickofsick (Member # 29258) on :
My heart goes out to you. I am so sorry about other people's attitudes toward all your efforts. As a mom of a sick daughter, all I can say is follow your instinct. Hoping and praying we can all get answers.
Posted by nonna05 (Member # 33557) on :
Lord bless you and your daughter.. It's so hard to fathom that people can be so cruel... Maybe if your sister is sick ,it's coming out hard your way because of her pain...Not OK but maybe. Also if your daughter is in such pain ,maybe seeing a pain specialist ( I never have ,but it works for some people)...I know it feels next to impossible to get to doc, but how about an RA.... Maybe lay off the Lyme issue and explain joint, muscle, bone pain. I don't know I's just so crazy... Love to you both, Nonna
Posted by Kudzuslipper (Member # 31915) on :
I just want to add support. And wish both you and your daughter some relief. Don't listen to your sister, listen to your heart. And when your daughter is in a better place, listen to her... What does she need most to help her continue healing? A good pain management doctor may help a great deal.
Posted by WPinVA (Member # 33581) on :
My two cents is that your sister is perhaps conflicted about her own decision to stop treatment, and she may be (unconsciously?) trying to validate her own decision through you.
I'm so sorry you and your daughter are going through all of this and that you aren't getting the support that you need and deserve. Is there a local support group near you?
Posted by Pony (Member # 32559) on :
So sorry for your current situation
However I agree with nonna. I think that a different perspective may prove to be very beneficial. It seems to me that there is a lot more going on than just the tick borne diseases. Especially considering you have treated them extensively.
I think a lot of us lyme patients get enamored with lyme, lyme, lyme when in reality there could be a host of other things causing these symptoms. (I'm not saying you are one of these people by the way).
However my point is that at this stage in the game, given the lack of success with antibotics ect, it couldn't hurt to explore some other options.
Whatever you end up doing we certainly wish you and your daughter the best.
God Bless
Mark
Posted by Catgirl (Member # 31149) on :
Mrs. Scampi, I am so sorry you and your daughter are going through this. No, all your efforts are not for nothing. You are doing the right thing trying to save your daughter.
You need to stay away from negative people who bring you down, even if it is family (been there). If your sister doesn't get it, that's her problem. You know better. It sounds like your daughter needs some changes.
There are several lyme support groups here in MA. Have you joined Yahoo's support group in MA yet (you can find one in your part of the state)?
Everyone above has provided you with some good ideas and advice. Lymenet is the best place to get it that I've found. Remember, we are all in the same boat, so we are here for support.
Please hang in there. You can do this. Posted by gatorade girl (Member # 24896) on :
Sending a hug and some support. I agree with the others . You are saving your daughter's life. I know you have the strength to keep on trucking. We are all thinking about you.
Posted by MrsScampi (Member # 11702) on :
First of all I would like to say Thank You to everyone that replied to my post.
I am going to try and address everything that was said so maybe just maybe it will come together and I will get the answer I am looking for
Kay(my daughter)has been treated for Babs at least 3 years with every regimen known, she did fairly well for awhile, but then something happens, she has had extensive testing, I mean everything from Blood,MRI's,Tilt table,Muscle Testing,Catscan after Catscan. Also she was on Bactrim DS for nearly a year.
After her last appt with LLMD he tested her kinselodgy(spl)and said defiently Bart and Mold and her throid was working,so we started treatment with Rifampin and that was when all hell broke lose.
She has severe aniexty, mood disorders,depression fatigue, heart issues, racing thoughts, pain throughout her body, lymph node swell all the time and rashes on and off, shins hurt, calves hurt feet hurt and are completely swelled, her pain starts from her neck into shoulders into arms, she always says her tendons are swelled, then their is the back pain that goes into her hips into her thighs all throughout her legs.
She does have a detox problem I believe its called the HLDRA4, Dr J told us that years ago, another problem is she is obsessed with sugar, so I know yeast is a BIG PROBLEM
Last week we went to the Neuro (which by the way does not address pain) she did her exam, and after said she thought bart defiently and also thought she was reinfected with lyme again, She was wonderful with Kay and explained the importance of Detox and stopping Soda and all sugars. By the way I have been trying to tell Kay this for a long while but she wouldn't listen, the neuro also told us that we should start Juicing so I went to Amazon and bought a few books. So we must begin this, she also gave us a list of supplements to help us detox so this new journey begins.
I hope I have responded to all you and know how thankful I am to have somewhere to come to get some much needed help.
I pray that God will heal you and all your family members and send special angels to each and everyone of you!!!
If I missed anyone's suggestion please forgive me I have lyme and on top of that the FlU.
Thank You and God Bless you all!!! Posted by seibertneurolyme (Member # 6416) on :
2 things jump out at me from your info.
First is the swollen lymph nodes -- a definite indication of inflammation. Options to help with lymph flow include herbal tinctures -- Buhner suggests red root. Others to try include cleavers or poke root (go very slow with poke root -- starting with 1 drop doses 1 or 2 times per day and ramp up very slowly).
Or another option would be lymphatic massage -- NOT the same as a regular massage. Can be done manually or with a hand held device such as Lymphstar Pro (think that is the brand someone used on hubby once). Or even milder would be rebounding on a trampoline.
But it is very important to get the lymph flowing.
The other related issue to this is hypercoagulation -- wobenzyme or lumbrokinase are some of the many options here.
As far as the suicide attempt -- don't blame yourself. I know it is hard not too -- hubby had a couple of psych admits for this problem when he first got sick 10 years ago way before we ever got a diagnosis of tickborne illnesses.
Personally for hubby he does much better on amino acids and supplements than on antidepressants and antipsychotic drugs.
Maybe your daughter would benefit from seeing a lyme literate psychologist. Hubby definitely did not do well seeing psychiatrists who were not lyme literate and after he was diagnosed and started treating and especially after getting on SAM-e and some other supplements he has never been back to a psychiatrist. He might have benefited at some points in time if there had been someone available close enough to see on a regular basis.
If the rifampin is too hard for your daughter to handle then the fluroquinolones might be a better place to start. Cipro then Levaquin then Factive are listed in order from weakest to strongest. But tendon problems need to be monitored closely.
I would defintely cut back on the Rifampin dose. Hubby started at 50 mg and it took him 8 months to work up to the normal dose of 600 mg. The docs used to prescribe low dose Rifampin several years ago when they first started using it, but some of them don't seem to remember just how hard it was for many long term lymies to take the higher doses.
Hang in there and hoping things start looking up soon.
Bea Seibert
A couple of other suggestions would be glutathione -- IV would be best but suppositories might also be useful. And high dose antioxidants -- vitamin C and pycnogenol (pine bark extract) and CoQ10 can all help detoxify and calm the brain.
Posted by BoxerMom (Member # 25251) on :
Thanks for the detailed reply. It does sound like her issues are Bart and yeast. Maybe Chlamydia Pneumoniae, as that is another infection that disseminates throughout our tissues, and responds to Rifampin.
These illnesses are so complicated, especially for the bad detoxers. They get so inflamed.
I know some here have treated successfully in spite of the bad detox gene. You could do a search or start a thread for that.
I'm sorry you're struggling. It sounds like the Neuro and LLMD have lots of Lyme experience and good relationships with your daughter. Maybe that will give her encouragement.
At least your have good doctors. Sorry about the sister. I hope you don't have to spend Thanksgiving with her!
Posted by BoxerMom (Member # 25251) on :
I also like Bea's suggestion. I've seen others start with the mini-Rifampin doses, and work up from there. That is usually successful.
Has she taken a med holiday and tried intensive detox? That can get some out of a treatment impasse.
Posted by 0ldman (Member # 22101) on :
What really helped me with my moods was B5 and Licorice root.
Raw garlic seems to be the best to help me feel better physically.
Its worth a try.
Her story sounds like mine. I was bit when I was 12, sick after a month, falling apart after 3 months, overdosed and undertreated for years, finally diagnosed when I was 15, it seemed to be as gone as it would get by the time I was 19.
29 years old and a nasty chest cold + abx + steroids for breathing brought our little friend back. That was 3 years ago. It is tough to go through all that when you're young. All these life experiences you expect are essentially pipe dreams.
It is physically tougher when you get older. I just don't bounce back like I did when I was younger, tho the treatment wasn't nearly as severe back then either, one abx for 3 weeks, 3 weeks off, bloodwork, 3 more weeks of treatment. Much easier to handle when I was at home, not having to work or go to school.
It does sound like she needs a brief break, just to let her body recoup, maybe just a couple of days.
Posted by nonna05 (Member # 33557) on :
OK, In was going to just start off with NO STEROIDS >>>>>>EVER. and they come in all shapes and sizes so ask,
But our old man above me just spelled it out.
It might not be his few extra years...It could very well be the steroids given to him...
They set me back so bad, I had 2 in back ,then 2 more 2 months later, then the kicker 1 in each hip on the same day 2 months after that . And it was the real stuff this time. not Kaiser. .Within 8 hours all H___ broke loose in my body..... .I've been fighting my way back since ,just to get to where I was ..This was before I knew about Lyme ,but was definitely sick with major long term infection.
It was an RA and a ID that called the place to give the shots. The place didn't want to at first , but wouldn't tell us why.
Sorry ,so long, so yes check other things out that could be happening, but ask, ask ,ask and then ask here. Nonna
Posted by glm1111 (Member # 16556) on :
PLEASE Mrs. Scampi, As you have asked me and I responded to you to treat her for parasites!!!!
In a recent post, Dr. K. has stated in order to get rid of babs, you have to get rid of G.I. parasites first. She might also have the Filarial Worm co-infection and NEEDS antiparasitics.
Is it possible for you to take her to see Dr. K. or one of his associates? Google parasite symptoms and check out the salt/c protocol at lymestrategies.
The salt will hit parasites as well as babs. Maybe try her on an herbal antiparasitic such as Parastroy. I am so sorry your daughter is suffering so much.
Gael
[ 11-16-2011, 12:49 PM: Message edited by: glm1111 ]
Posted by Catgirl (Member # 31149) on :
It does sound like she got bit again. I'm pretty sure I got bart and RMSF from my first or second bite, and babs and myco from the third. We all have to be sooooooooooo careful not to get bit again.
It sounds like she has a co infection that is being missed. I think a lot of docs are missing the worm connection. Massachusetts ticks do have worms, and I think that may be a lot of our problem here. I would definitely consider doing Gael's suggestions. It can't hurt.
Posted by randibear (Member # 11290) on :
oh my, yes, stop the sugar. no soft drinks, no tea, etc., nothing.
has she been on diflucan? that med is a godsend for me but unfortunately nobody will give it to me.
i bet that would help.
Posted by CD57 (Member # 11749) on :
Having struggled myself with bart that has been non-responsive to treatment, I have to say this infection could be responsible. Also, Rifampin treats cysts (maybe) and probably babs to some extent.
Bart is a tough bug -- I am four years in treatment and for some reason nothing sticks. I am looking for answers as to why myself.
I have also been seriously suicidal, and recently have discovered that this is due to toxicity. I was always lax with it, and now am kicking myself. She needs glut, saunas, enema, anything you can do -- I am going to try Welchol myself.
Possibly toxicity can block successful treatment.
Posted by gagamooppop (Member # 34314) on :
I too just wanted to give my support and encouragement with what you are going through. This bug can really mess you up!!
I literally thought I was going insane out of nowhere. It didn't make sense to me. My job is not stressful, I WAS a pre-elite athlete, everything was fine and then wham...one day I couldn't drive anymore, I couldn't walk anymore...stairs?? Forget it.
Please read these sentiments to your daughter and let her know that she has support. You are doing an amazing job as a mom and double kudos to you for also trying to treat yourself and take care of her.
Everyone in my family thought I was going crazy too and didn't believe me for a long time. I finally found a naturopath that would listen to me and ran a Lyme test (no one else wanted to...).
I'm glad I ran into the naturopath first b/c she explained to me about detoxing and completely changing my diet. At first (and sure, still now) I am majorly bummed about it. But anything that lets me feel real and walk I'll do it.
No pizza, no soda, no burgers, no ice cream...NOTHING. But if it allows me to get that grasp of reality I'm down.
Juicing also helps but don't overdo all at once b/c if she hasn't been detoxing this can be huge on the gut as I've experienced.
I decided to start juicing to be healthier but did it all wrong. I would go from eating my delicious pizza/burgers/WINGS wait a little and drink a huge juice.
Bad idea. One time I drank way too much (and way too quickly b/c of the taste) a carrot/beet juice and literally turned orange/red and my mom wanted to take me to the er b/c she thought I was dying.
If you want any info and if your daughter wants anyone to talk to you can PM me...I'm not in my early twenties, but still feel and act like it (just turned a young 30)...
Please keep doing what you're doing and you both will get through it.
Posted by In19944 (Member # 34272) on :
My best to both of you. It's so hard. You say she's addicted to sugar? That's a major roadblock. I've had to give up gluten, dairy, sugar. It stinks but those are the rules for healing.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by In19944: My best to both of you. It's so hard. You say she's addicted to sugar? That's a major roadblock. I've had to give up gluten, dairy, sugar. It stinks but those are the rules for healing.
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Amen.
NO wonder she feels like dying!! Candida/yeast is very serious!! It's a FUNGUS. If she eats sweets she is feeding the FUNGUS. It CAN and does cause pain and misery.
I feel for both of you very much!!
Posted by lyme in Putnam (Member # 11561) on :
I'm so sorry, for your sister, tell her to mind her business. I had friends and family look at me like I was poisoning my son with 3 years antibiotics. Took three years and he's dormant now. Hopefully the neuro can help. God bless.
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Nonna
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