Ive been feeling soooooooooooooooo soooooo sick this past week that i feel like this may be the end of the road for me. My heart cant take it anymore, atch/24/7 and now arrythmias, muscle wasting and wekaness, unable to walk. i had to crawl to the computer. my lungs are not letting me breath. my joints are barely bending. I was this ill ion the sumemr but now 10x more. I am asking for prayers and healing thoughts from everyone. Any kind of positive energy my way for myself and my family would be appreciated. I am very scared . All I ask is for prayers, htey helped me get through the summer which was rough. Those of you who sent me supplements I will be forever grateful as they gave me 7 more months.
At this poitn I am out of supplements and my illness has progressed to such an extent that I really think my body cant do this anymore. If anyone has any extra supplements they could share please do let me know, they could save a life. If not, I am still very grateful for all that was done for me.
This is probably my last post here as i am in no shape to get to the comp. Just asking for prayers.If my condition changes for the better I will let you know God Bless and lvoe to all Lynn
Posted by Robin61 (Member # 5470) on :
Lynn, I will pray for you! This disease is so tough hang in there it will get better. If you are not making progress think about changing docs this has made all the difference in me. I still have a ways to go but have made lots of progress in the last 6 months since changing docs. Take care and best wishes....Keep us posted on you! Robin in houston
Posted by bejoy (Member # 11129) on :
I'll pray for you and keep you in my heart.
bejoy
Posted by Geneal (Member # 10375) on :
Dear Citrus,
First I am sending you positive healing thoughts and prayers.
What kind of supplements do you need? You can pm me if you want.
I'd like to help you if I can with the supplements.
Please let me know.
Geneal
Posted by MariaA (Member # 9128) on :
Do you want phone calls? Post your number or give it to one of us in a PM .
What supplements do you need?
do you have a doctor right now?
Posted by Jon (Member # 9123) on :
Hey citrus, I sent you a pm. Hang in there!
best wishes.
Posted by catalysT (Member # 10786) on :
citruslyme/Lynn - Hang in there! I'll pray for your health and situation to improve.
Tell me/us what supplements you are out of.
Posted by Michelle M (Member # 7200) on :
Lynn, your body CAN do this. You've fought back before with some success! Dig deep and don't give in. You're YOUNG, unlike most of us geezers. (Well, speaking for MYSELF, anyway!)
I thought you might be coming south again for some treatment. Is that not happening now?
If you cannot get proper medical care, there are herbs with pretty potent antibiotic properties. You are positive for babesia, right? Artemisinin will help; perhaps others have some other herbal suggestions. I'm not exactly the herb expert around here but there are lots of threads on the basic protocol to follow and I would sure give that a try rather than doing nothing.
You have lots of support and friends here. Please don't give up!
Buhner's book would be a good start. Do you have it?
Michelle
Posted by kam (Member # 3410) on :
Lynn..
First thought I had was to think about who might help you move the computer next to your bed.
Second thought I had was wow...it must really be tough having things get so bad again only worse.
And then there is the lack of funds to possibly get those things that help you. Frustration and stress.
I will say a prayer for Lynn in NOrthern CA with lyme.
Sending private message
Posted by 5dana8 (Member # 7935) on :
Hang in there citruslyme
I'll keep you in my prayers
Blessings Dana
Posted by citruslyme (Member # 7851) on :
just wrote some pms as i felt stronger but right now wekaness is hitting me again. i think i will faint and am ice cold. gotta rest. prayers are much appreciated thank you.
Posted by Health (Member # 6034) on :
Citrus I have been there, many times.
I would not be here without antibiotics. I dont know if you are on them, and if you are and are weak, then the healing may be too strong for you to take
making you weaker, reduce the dosage if this is so. Also, for me, I had to treat babesia when I was weak, I was getting weaker from babesia twice.
Tough to know what is what many times for some of us.
I am getting weaker now, but not sure what it is this time.
I know how sick one can get with this, I know the feeling, I hope that you get better.
I know the devastation it does to the mind and spirit. I pray for you now.
Trish
Posted by MariaA (Member # 9128) on :
I told her I'd order her a few of the supplements she asked for. I didnt' get her address with the list though.
In case she can't answer all of us, if anyone hears from her what her address is, let me know in a PM so I can do a Vitacost order.
I'm not sure if we're supposed to be doing this on this board (it seems like I read something aobut not soliciting on one of the forums) but she had a list of fairly basic supplements and I've got some spare money for once.
Posted by Cobweb (Member # 10053) on :
I know I'm not the sharpest tack on the board, but I'm getting confused. I thought Lynn was in Canada?
Why is someone saying prayers for Lynn in NOrthern CA (?).
I also thought Canada had better access to care than the US-and there is a big Lyme website out of Canada.Canada is not a third world country-and I know there are several Canadians on board-perhaps they can point you in the right direction.
Anyway- I should send you all my supplements because i don't remember to take them anyway! I also have a ton of anti-depressants that don't work for me-they don't cure lyme-but at least you wouldn't feel so hopeless.
When a Lymie dies-how does their name get on the Memorial list? Just thinking ahead for any of us. Sounds as if Lynn doesn't think she'll die of lyme but some other malady. Anybody watch HOUSE lately and the episode about Vitamin B12 deficiency?
Also lack of vitamin D-it's winter- try sticking your head out the window for some sunshine each day-I'm not being facitious here either. Just trying to think of ways to improve the situation that doesn't require money.
Anyway- I can identify with you Citrus-sometimes I think the length of my life depends on when the money runs out.
You're a student? What were/are you studying? Do they have an infirmary you could go to?
I can also tell you that it's the antibiotics that make me feel like I'm going to die ,too-esp. minocycline and flagyl. With or without supplements they do a number on me.
Solicitation takes many forms. Anytime we ask for help we are solicitating-"to seek for by entreaty" and then there's selling a product or service. So I guess solicitation is both sides of the coin.
There are many many very needy people on board-perhaps the neediest of all don't even have a computer to let us know.
Anyway-I thought Lyme thrives in an acidic environment-think alkaline-change your User ID to something like "the energizer bunny". Just trying to think outside the box.
Carol
Posted by Geneal (Member # 10375) on :
Good morning all.
Rec'd a pm from citruslyme re: needed supplements. I saw many offers for help with this.
Some I know I can get. Some I don't even know what they are.
Maybe we could break up the list and everybody who can contribute something can take an item off the list.
Let me know. Maybe this way we don't duplicate the same item and we can possibly supply her with everything she is needing (supplement wise).
Geneal
Posted by Maryann B (Member # 11066) on :
Lynn,
My prayers and positive healiing thoughts are with you. This disease is scary. Hang in there. what kind of supplements do you need?
Heal, heal, heal
Maryann
Posted by humanbeing (Member # 8572) on :
I have been trying to get you some help in Canada...from Canlyme site... Here is a very informative post that you need to explore: ---------------------------------- Homecare is a very good idea. She / Her family can call 211 (community information) on their phone, and find out what kinds of services are available.
If 211 doesn't work in her area, call directory assistance and ask if there is a North York community information number, or call City Hall.
In downtown Toronto, homecare services are provided through the Toronto Community Care Access Centre. If you request them to, they will send over an intake worker, who will assess what is going on, and what kind of help is necessary.
I believe requesting a social worker through them is accessible. Getting a homecare nurse will happen one of 2 ways. 1. Her GP can request it. 2. You can talk to the social worker about it. Having homecare on your side can be an invaluable aid in navigating yourself through a frustrating medical process of specialists. If you get a good nurse or social worker, they will help you with strategies to get help. The easiest bet is to have her GP request the nurse, which you can do, and it likely more efficient than calling homecare yourself.
Some of the nurses are activists, in a way, and with some luck, you'll get one who will help you navigate, rather than just take your vitals and tell you to listen to the doctor. You have to remember that some of these nurses are the most profound people you'll meet, and do a lot of palleative work with patients and families.
A number of them were around in the early days of AIDS, and know what it is to get help within a system that was in denial. I believe you can request a different nurse if the first one who comes isn't a good fit.
A good social worker might be able to help as well. This is a very good idea to explore if she's in bad shape. Also, when she calls the community number, she should ask whether there are other community organizations that can help with the sick.
Some provide rides and support. And there is meals on wheels, though the food notoriously isn't great, maybe it would be good in her area. Let us know how it goes.
-------------------
Lynn, you need immediate care and maybe a home nurse could be provided for both you and your mom to help with many issues you are both facing...
My heart is breaking. Please call me ASAP...I sent you a box friday.
Hugs, Kim Kim
Posted by citruslyme (Member # 7851) on :
Hi everyone I'm a bit better today. boy this past week has been scary. I found some left over cayenne pepper which put me back on my feet temporarily by helping with the blod flow and heart.
I never for once said its not the lyme trying to kill me. think the lyme is attacking me full forcr because of another mystery maladie.... so its not just this mysetery thing its also lyme which acts great with coinfections--- give him a new friend and he'll finsih you . this is how ive been feeling.
Now Canda used to have one of the best healthcare systems in the world, now it is way behind. If anyone here ever doubts that I welcome you to come here and see doctors for yourself. You will see just how much help you can get.
When I went to the US to see an LLMD he told me its brutal in Canada, way worse than in the US when it comes to lyme and treating it.
I often compare it to Bangladesh for crying out loud as for the past 3 years I have gotten no help . In addition to ignorance, there is a huge shortage of docs right now due to past prejudice towards immigrant doctors who were qualified. Many ended up working in fast food places, etc. Others moved to the US and got a license much easier than here; less prejudice , the US welcomed them openly.
Now you have to wait hours to see a doc, if at all. You are a Number to them, no longer an Individual. And they feel arogant in this public healthcare system where docs are in shortage.I have met two docs out of seeing hundreds that listened cared, wanted to help, and made you feel like a human being . one which does my acupuncture and another out west.
They swipe your health card and kick you out. Can you imagine a leukemia patient getting kicked out after being a patient for 17 years and finally they have fallen ill and have questions? Thye ask for more testing and have questions, but the doc says they are busy and don't want trouble and kick them out ?I can because it happened to someone in my family.
And what can be done ? The doc said nothing can be done, that they have the right to just kick you out if they dont want you as a patient.This is scandalous and I doubt could even happen in a third world country. If I do live till the end of the month, I have promised myself I will write a letter to the medical board regarding this incident.
Is there a memorial list for lyme? it would be nice to have one, good idea carol. Maybe i'll be the first on it if things continue the way they have. Atleast I'll die for a purpose and get the attention of the medical establishment for maybe 5 min.............but wait I think they'll declare my death of natural causes on second thought.
anyhow help comes in different forms. Just asking for kind thoughts and prayers in anyone can. I'm better today and am thankful for this support group. I'm sure anyone can relate to that frightening feeling.
I will not give up. Ive come this far and will fight till the end. Whats scary is when you get too sick to travel to an LLMD and have no one anywhere here. And then you dont know whether you are herxing, whether its the lyme progressing/ my new mystery coinf".
btw cobweb I thought citrus was acidic, the juice? thats why I thought it suited the name.lol but what do i know.
also here's a list of what I'm short of if anyone wishes to help,please PM me. some of these have helped me get through the months since the summer. my heart and lungs are very affected as well as muscles and bones. This is a list of what helped me function, I dont think I would be here without supplements. If you can't help this way thats fine , prayers are much appreciated.
cat's claw it vit c/ salt alpha lipoic acid fish oil /omega 3 hawthorn - helps heart cayenne pepper- helps heart chondroitin for joint pain Coenzyme Q10 maca oregano to combat infections L carnitine/ L Lysine vit A
[ 17. February 2007, 09:14 PM: Message edited by: citruslyme ]
Posted by iceskater (Member # 8655) on :
Dear Lynn: I will keep you in my thoughts and prayers and send strong healing energy your way, Hang in there! Posted by citruslyme (Member # 7851) on :
Ann Oh suggested this mystery thing may be rocky mountain fever, and the sx match! and the rash matches. I did a google and I have those "spots" on my palms. interesting. Can rocky fever be found in Ontario, i know ticks dont have boundaries but is this more specific to people who live around the rockies> the sx match , wow. I dont recall a tick bite and neither my mom...... can a cat bring it by scratching or any other tyoe of vector like a mosquito> we first thought it was froma mosquito. if I have ROcky fever,this would explain why I'm feeling the way I'm feeling and why I think I'm gonna die from this!! and the Lyme is acting up big time , so this cinfection would explain why.
It began with : a severe headache like someone was hitting me in the head with a hammer frontal sinus headache dry harsh cough and inflammation then my mom and I got severe lethargy little purple petechia all over skin spotted rash on palms and soles,my mom has it on her legs and arms too hypertension/ hypotension gastro sx hemorrhaging extreme bone pain and msucle aches circulatory issues/tach/ arrythmias feeling of faintness and inability to function etc any input?
thanks
[ 17. February 2007, 08:24 PM: Message edited by: citruslyme ]
Posted by psano (Member # 7785) on :
If money is such an issue for you, why don't you try noriftrife? Long term, it's got to be one of the least expensive ways to go and has been said to help many who have tried it.
The salt/C protocol is also supposed to be inexpensive and effective as well.
Don't give up. You have to do anything you can to beat this.
fyi, melanie reber has 125+ on her memorial list on the new MEMORIAL lyme site she created.
i know there is the professor from england on it.
Posted by Cobweb (Member # 10053) on :
WEll- your thinking might be right -you could die if you have Rocky Mountain Spotted Fever cause it can be fatal-but it is treatable with antibiotics. All the supplements in the world aren't going to do a thing for it.
Does it matter how you got it?
If you have the characteristic rash -both you and your Mom-with all the other symptoms-then it's easily diagnosed-easier than Lyme Disease.And the medical society doesn't seem to have the same bias towards it.
So both of you, including your Mom need to go back to the hospital and lay your hands out on the table so to speak.
Since Rocky Mountain can be fatal they should take it seriously. Good Luck. Carol
Posted by MariaA (Member # 9128) on :
help- I'm really insanely busy today but may be able to get online briefly tonight to order some of the stuff she asked for (tho' she needs to go to ER again if it's RMSF, as supplements won't help with that).
Could someone who has more time today, look up whether Vitacost ships to Canada, and if they don't, could someone do a bit of research to find out what vitamin/supplement/herb company operates up there? Due to the obvious money constraints I'd like to send her the Solaray/Source Naturals/Nature's Way sorts of brands (they're the less expensive brands of herbs, which is exactly what I buy for my Lyme).
She had a list of supplements she's been taking, and the following is what I will NOT be able to get, maybe someone else can get it for her:
chondroitin for joint pain Coenzyme Q10 maca L carnitine/ L Lysine vit A multi Vitamin salt/C
Obviously these are not going to address RMSF and we're not saying they will, but she's found some of this stuff helpful with her general symptoms before. I think she hasn't tried Salt/C but wants to, from what she was saying in PM's
Posted by MariaA (Member # 9128) on :
Is tomorrow a post office holiday in the US?
Maria
Posted by shazdancer (Member # 1436) on :
Yes, Monday is a federal holiday.
citruslyme, I hope you're feeling better soon!
Posted by Lymeblue (Member # 6897) on :
Cytrus:
I've been treating my lyme for more than 6 years with abxs and supplements.....
Thought I was gonna die anyway...was sicker even though I was on abx by the 3rd and 4th year.....but somehow I never gave up..maybe that was my miracle...never giving up.
I kept looking for answers going into treatments trying new "approach"...now I can say I'm 99%.....still visiting my LLMD and taking some medications and supp...but I'm fine....the "I want to die" sentences have not been pronounced in a long time....
I'm very active..don't feel bad when eating a lot of stuff that I shouldn't.. I feel pretty much "with ants in my pants"...and the most important: 100% pain free..you see when your body gets well your mind gest well too.....
THe sx you describe where the ones that made me jumped into a plane a little bit more than a year a go , and visiting my LLMD...after 2 ER and no answers.
I knew my LLMD would help....
To make the story short babesia was back even thought I was treated big time for this co-inf. in the past...only my LLMD recognized it.... and treated me again with other meds against babs...
what I mean is...even thought I'm not 100% out of the woods I can tell you there is light at the end of the tunnel....
One more time "patience" and never give up..keep trying....ride the "wave" as I was told by my relatives who didn't know how to help...but were some how there for me.....best wishes...
BTW My daughter relapsed a year a go...she is currently very sick... but very sick....and what takes the tears away from my face when watching her suffering with pains all over her body is my experience....Citrus I WILL NOT LET the panic take a way my focus on "helping my daughter"....please keep focused on your goal...
Lymeblue
Posted by Cassie (Member # 2106) on :
Lynn, I posted a reply on General.
Do you know about CanLyme? There is a Dr. B. in Toronto. I have never been to him but I heard he is very knowledgeable about Lyme.
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