-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Jennie,
So sorry to hear about your illness and all this stress. You sound too ill to go through a divorce battle soon, and you may have to let go of dealing with that so that you have time to get better.
I think you should reach out to your LLMD, and let them know about this diagnosis and how you feel. I hope that she or he is as compassionate a person as they are a good doctor, and will want to help you. Sending you best wishes to feel better soon.
Posts: 2557 | From home | Registered: Aug 2006
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posted
JEN I know tears don't help at all , but your suffering brings me so much emotional pain that I can't help but break down. I am in a lot of pain myself , so I understand your despair.
I too have the leg swelling just now , and am only 105. I'm not strong enough to take high dose abx , the herx last too long and I struggle to get rid of toxins. There's been so many times I have thought I am at deaths door , no doubt many on here can relate to that same feeling .
I have been wondering were you were, now I know. We are sometimes a little stronger than what we think, even if we are low in spirit. Thinking of you.
Posts: 153 | From England | Registered: Jun 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sending prayers to all of you.....in this dark tunnel.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Many thanks to those of you who have reached out to me to try to help me!
My heart truly goes out to those of you who suffer such as I am and even more!
I kept feeling worse and even though I can hardly stand to go to my local hospital anymore, since they never seem to really understand lyme and all of the issues it can cause, I got really scared, so I finally broke down and called 911.
When the ambulance got to my house and the paramedics came in, I asked them if they thought I should go to the hospital, as I didn't want to take any chances of something bad happening to me, yet I didn't want to unnecessairly bother anyone at the hospital either.
After they moniterd my heart with their machine, which showed my heart rate will stay increased around the 150's, then temporarily drop down to the 90's, which is when I feel like I'm going to pass out, they advised me to go to the hospital.
The emergency room doctor could clearly see, from running an EKG on my heart, exactly what the paramedics saw my heart doing.
That's with me laying down and being as calm as I can too, but when I try to situp and move around to do anything, it shows my heart rate increases around the 190's, then temporarily drop down to the 70's, which is when I feel like I'm going to pass out even more.
He ran some basic bloodwork on me, including a CBC with differential and CMP, as well as had a chest x-ray done on me, which were all completely normal.
My sed rate is high though, which I know means I have alot of inflammation, and my TSH and T4 are low, but that's the way they've always been for years now, since I started taking medications for my hypothyroidism, which has never given me any problems whatsoever.
When he tried to say my low thyroid tests are what's causing my current problems, I told him what I just said about it, as well as asked him to run a test to see what my T3 level is.
He acted like he didn't believe what I told him, said he couldn't run the test, without there being, at least, a one day delay, and told me he didn't know how else to help me, thus to get dressed, because he was sending me home.
It was his only explanation for all of my symptoms, including my tachycardia and swollen left leg, which he can clearly see, although when I asked him about them further, he couldn't offer me any definitive explanation than what he'd already told me.
I figured it would probably turn out like it did, as it has several other times, when I've been seen by doctors there, yet I felt this time I'd actually be helped.
Unfortunately, I was wrong and as usual, I was sent home, yet again, by another lyme illiterate doctor, with me knowing quite well something serious is wrong with me now.
Since I was taken there by ambulance, my car wasn't there, so I couldn't drive myself home, which I explained to one of my nurses.
He offered to call someone to come and get me, but sadly, I had to tell him I don't even have one person to contact, who'd be willing, so he suggested I let him call a cab for me, instead.
I told him I really didn't have the money to pay for a cab to take me all the way from the hospital to my house, but since I didn't have the energy to walk home either, to just go ahead and call them.
It took awhile for the cab driver to get there and he could clearly see I was upset, so he asked me some questions about what was going on and I told him some of my story.
He was so nice and understanding about what I'm going through and even said he could hardly believe my friends and family would turn their backs to me, like the have, although I could tell he really believed and felt bad for me.
He should have charged me $10.70, but told me to just give him whatever I wanted, so I told him to just tell me how much he wanted me to give him and I would.
He said $5.00, so that's what I gave him, and I thanked him for blessing me financially and helping me to see there really are some nice and understanding people in this world, especially since I've had so many treat me so bad.
I held back my tears, while I was around the paramedics and at the hospital, as I didn't want to chance being labeled psychosomatic and admitted to the psychiatric ward.
After I was released from the hospital though, I just started sobbing so hard and haven't quit yet, even as I write this.
I'm in such a horrible predicament, which is the worst I've ever experienced, in my entire life, and can't even imagine it getting worse, although I know it's going to, before it's all over, yet have no idea what to do to make it any better.
I did get copies of all the tests ran on me, which I plan to relay to my primary care physician and LLMD later today.
I'm going to ask to talk to both of them today too, about what they think I need to do from here.
That's really all I know to do, at this time, even though I really don't have the money to do so.
I'll let you know more, when I do, as soon as I can.
In the meantime, if you will, please keep me in your prayers, as I could use as many of them as I can possibly get.
I believe the tetracycline I just started taking, a couple of weeks or so ago, was really starting to kill off the spirochetes in my heart and lungs, thus the carditis and pleurisy I have, along with my other symptoms.
I remember having about the same type of reaction to doxycycline, when I first started treating my lyme, and realize they are closely related drugs.
I'm going to stop taking it and as a result, I think I'll be feeling alot better in a few days or so.
I know that doesn't help me to treat my lyme, thus get better, which concerns me, especially since, to my understanding, the cycline family of antibiotics seems to be some of the best to treat lyme.
I know I have to be able to tolerate taking some types of antibiotics to treat my lyme, so I can get better, yet realize I'm quickly running out of some good options.
It seems like, no matter what I try to do to help treat my lyme, I always seem to suffer unbearable effects from it.
Where that leaves me, in the whole grand scheme of treating my lyme, which inevitably has to be done, in order for me to get better, else it's eventually going to get worse, until my body shuts down, I just don't know.
I must admit though, it scares me beyond belief.
Has anyone ever been in this situation and if so, what way, if any, did you find around it?
I'd really like to know, as your experience could hold the key to me treating my lyme and as a result, getting better, if you don't mind sharing it with me.
I hope and pray my doctors will have some valid and hopeful answers for me today!
Thank you very much, to those of you who are listening to and supporting me, as I reach out in desperation to the only people I know, who truly understand what I'm going through, right now!
It honestly means so much more to me than you'll ever know!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Wow! I am so sorry that you are going through all this. I weigh more now that I am out of my moldy apt. and took MYSELF of the methadone.
At one point I was at 98lbs. But with the nuerotoxins of the mold and the Lyme I was double wammied.
I think you need some help FAST too. Your body can not handle all this stress. I KNOW! I was there!!!! If I didn't find out about the mold in my apartment I may not be here typing at this very moment.
I see my VA clinic doc today and I am NOT going to be nice to him today. I am going to request to see the cardiologist myself. I think I have some issues that need to be addressed.
My cousin at the age of 34 has been diagnosed with MS and Fibro last year. Her whole arm went numb a few weeks ago. Is crazy sick and now last week she found out that she has to have a TOTAL heart vavle replacement. I think she has Lyme.
So PLEASE get help. I am worried about you. Do you have health insurance? If so, can they provide a home health care nurse to come and check on you or help you? I so, PLEASE check that for yourself.
Posts: 109 | From San Antonio,Tx | Registered: May 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi Jennie,
I responded to your other post but OMG!!!
I got choked up reading your post.
I had a couple bouts of 'bronchitis' and pleursy and wouldn't have recovered without the antibiotics.
I know what you mean about the pain.
One thing the doc prescrbed was pain pills which helped alot with the breathing pain.
I'd stay on the antibiotics though.
There's many of us here that have gone back and forth to the ER and other 'specialty hospitals' and received no help.
Don't let lack of compassion and ignorance get you down Jennie.
We that have been in your shoes are here for you.
Hang in there.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i cannot believe what you are going through. where is your family??
after loosing my mom to lyme, i hate to hear of anyone trying to get medical care and can't.
do you have a church? sometimes people in the church can help out.
i wish i could help you.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Those who know me on this board, know I am not a big fan of abx, but there are times when the big guns are absolutely needed.
My sis had to resort to steroid shots in her eyes to save her eyesight.
Lyme carditis is serious. You need a good cardiologist asap.
But...do NOT think this is impossible.
A cardiac specialist can quickly read up on the latest treatment:
Int J Cardiol. 2008 May 26. Cardiac implications of Lyme disease, diagnosis
Kardiol Pol. 2008 Apr;66(4):420-5 Lyme carditis presenting as acute coronary syndrome: a case report.
``After 21 days of continuous antibiotic therapy with ceftriaxone (2.0 g/d) the patient recovered completely.''
Infect Dis Clin North Am. 2008 Jun;22(2):275-88 Lyme carditis.
The above articles may help a doctor who knows little about lyme catch up to speed fast.
Time, too, to reach out to meals-on-wheels perhaps and yes, definitely, church support. ASK for help, keep asking.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
jjeennnniiee,
I am so sorry that you are having to deal with all this, but you can do it, jjeennnniiee! Don't let yourself focus too much on where you aren't curently getting help, and let's see if there are some things that you can take into your own hands that might help you right now.
While you are getting assistance and counsel from your doctors, maybe there are some other things you can look at as a complement to your recovery.
When I become overwhelmed with Lyme and all it entails (I have the carditis too, among other late stage problems), it helps when someone reminds me to break it down into items to address, and what things might help that I can do on my own - it gives a real sense of empowerment and that makes a huge difference in my feelings of fear, concern, or worry.
You mention that you are low on food, and I understand how difficult it is for you at the moment, to get to the store on a regular basis (I have been housebound for 2 years). So I reckon you don't have much in the way of fresh veggies and fruits and healthy fresh foods. This leads me to be suspicious that maybe you are low on some important nutrients.
You need to make sure you are getting calcium and magnesium in your diet, or supplement with a safe calcium/magnesium combo pill (a lot of us can't tolerate magnesium stearate, so look for other kinds). Magnesium and calcium are super important for regulating your heart as well as your overall health, even your swelling!
Also important for swelling and heart problems is potassium. Please find a way to at least have fresh bananas or other fresh food that contains potassium, every day.
Your nutrition is so important to your health and recovery, just as important or in a way moreso than those antibiotics, because they can't work for you like they should if you aren't taking care of your body along with them. They are meant to knock down the load of bacteria so your immune system can pick up the slack again.
Also - I don't know if you live on enough land to have plants growing wild in your yard, but even if you don't you can grow herbs from seed in pots or find them in public areas and pick or transplant them. Most plants have medicinal uses of some kind (not all safe for self-administering) - almost every "weed" in your yard or field.
Herbs can help you with your symptoms or some even find them to help them get better. I use some of Bruhner's suggestions, but find my own herbs and make my own teas.
This is a free source of medicine that most of us are completely unaware of. I can help point you to places you can find out about this if you want to learn more, or there are threads on this forum. Or you can make a new one.
You can DO IT, jjeennnniiee! Think good thoughts about yourself, your body, your FUTURE! You have a wonderful future that starts now!
Even though it's hard and sometimes seemingly impossible, you are going to do what you need to get better, to the best of your ability and then some, each day.
And that includes imagining yourself well, even if you can't believe it deep inside. Just allow yourself the pleasure of that imaginary wellness, and what you are gonna do with it.
I swear if I lived near you I would be helping you out if I could take care of myself.
I know you have every right to be completely at wits' end with those around you, and with your situation, but you want to be well, and you want to take care of yourself because you deserve a good life. There are people who haven't even met you that respect, admire, and care for you, and would do for you if they were near.
You are going through a very stressful event in your life with your divorce, and that would make a lot of people sick in itself, so it's important to remind yourself of not only the kindness and strength of others but also your own.
It's important to do this exercise: when you get scared, when you feel overwhelmed with fear, sadness, anger, depression, sickness, any and all of it, give yourself a shot of something positive.
When we have negative emotions they can act like a poison shot on our bodies and minds, so even if you don't feel it, counteract it with a happy or positive image or thought. Go through the motions with positive affirmations, and eventually you will believe them, and then eventually they will become real.
Remember to feel compassion for yourself when you are sick. Love and care for your body and mind, don't let it dwell in sadness too long.
Don't forget, please find a way to get those fresh fruits and vegetables, avoid packaged and canned foods where you can (frozen is best if you can''t have fresh), and eat more whole healthy foods, and take that calcium magnesium supplement if your doctor gives it the ok. They can be an incredible medicine!
I am so sorry this is so long and I'm not even sure it will be any help to you (but I hope the thought counts for something haha), but if and when you ever do take Calcium or magnesium supplements (and others too), remember to take thenm at least 4 hours away from any meds you are taking, antibiotics, thyroid or other hormone replacement, ANY meds. The calcium and magnesium interfere with absorption etc.!
I really hope this helps in some way, I know it's all rather common sense, but it helps me and I only know to share what I have learned. My best wishes for you jjeennnniiee!
I've read your posts and thank you so much for them, as they've truly lent alot of encouragement to me, which is well-needed, at this time.
Between my latest happenings with my health, including my emergency room visit last night until early this morning, I'm feeling worse than I have in a long time.
I spoke with my primary care physician's nurse today, but haven't heard back from them yet.
I spoke with my LLMDs nurse today also, who has already spoke with my LLMD, and relayed to me what they think I need to do, in order to feel better.
They said the tetracycline I started taking, just a few weeks ago, has caused me to have an awfully bad herx, which has really hit my heart hard.
I'm told it happens and is an indication of how high my bacterial load still is, especially in my heart, thus when I start taking it again, I've been advised to start with an even lower dose and give it some additional time, so I can see how it's going to affect me, before I increase it.
I just went way too fast with way too much of it, not knowing it though, until it happened, how bad it could really get, as my body seems to be quite sensitive to dieoff, from being so sick still.
I don't like the thought of it, even though I realize it's necessary, but have been assured I need to discontinue taking my antibiotic, until all of my symptoms resolve, as well as take a short course of steriods, to lower the inflammation in my body, especially my heart.
I wish I had someone to call, who would go pickup my steroid prescription at the pharmacy and bring it to me, but unfortunately, I don't.
I've been trying to gather what strength and energy I have to go get it, all day long, and it's getting late, thus the day is almost over, so I've got to push myself to go get it now, no matter what, because I know I need it.
I'm sure I'll be just fine, it's just going to seem like a long hard trek there and back for me, which is going to take alot out of me.
I hope I come home, take it, and start getting some immediate relief tonight, but if not, then tomorrow, at the latest.
They told me I should start feeling alot better, no later than the end of the week, but hopefully, sooner.
I'll be back, just as soon as I'm feeling up to it, to answer any replies to my post.
I thank you from the very bottom of my heart for all of your love and support!
You all are the best group of people anyone could ever ask for!
I have no idea what I'd do without you all!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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bettyg
Unregistered
posted
jennie,
just getting on, and just learning what has happened to you in the last day/ER and ILLITERATE drs. with NO LYME KNOWLEDGE!
YOU POOR THING GOING THRU ALL OF THIS WITHOUT ANYONE THERE BEING YOUR FRIEND/ADVOCATE!!! it just tears me apart to read this.
lyme is bad enough but GOING ALONE THRU THIS **** is outrageous!
does your community have UNITED WAY there? there are many organizations that MIGHT be able to help you as well.
definitely touch base with your church secretary or minister!
randi, HOW KIND OF YOU TO OFFER to send her needed supplements!
i'm just so sorry you have NO MORAL SUPPORT ... someone to listen to you, to kiss or get needed hugs, so here are mine now!
get your NEEDED REST! i'm putting you in my thoughts and prayers for God to take you under his wing, and find some MIRACLES FOR YOU SOON!
we love you jennie! don't forget ... we ARE walking in your shoes; we'll help carry your load and share it with you...
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I'm not so sure that's in my best future interest, but I know I can only do what I can do.
I've reached out to my LLMD and am so glad they're there for me!
Thank you for the feel better wishes!
Herxuk...
I'm so sorry my post upset you so much!
I certainly didn't mean for that to happen.
I'm very sorry to hear of your struggles with lyme too!
I can certainly relate.
Thanks for thinking of me!
I'll be thinking of you too.
Geneal...
Thank you so much for the prayers!
Lymetoo...
Thank you so much for your concern!
I've called someone in my family, but to no avail.
Now that I've been able to get some information from my LLMD, I feel a lot better and think I can manage at home now.
Thanks for the hugs, love, and prayers!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm glad to hear you are staying on top of your health!
I'm sorry to hear about your cousin!
I have health insurance, right now, anyway, so am going to see if I can get my primary care physician to have a home health nurse keep an eye on me.
I called them yesterday morning and still haven't heard back from them yet, which really upsets me, and knowing I can't get any ``custodial'' help through a home health nurse, I'm not sure if they'll be of much help to me, but I'll try to see what I can find out.
Thanks for your advice!
aklnwlf...
Thank you for your concern and advice!
I'm sorry to hear of your troubles too!
I'm trying to stay positive and hang in here, knowing others have gone before me and are here for me.
Thanks for your encouragement!
randibear...
I'm so sorry to hear you lost your mom to lyme!
Bless your heart, as I know that had to be so hard on you!
My family and friends are not unlike many of those who are faced with lyme.
Either they don't understand or just don't want to.
The same goes for my former church.
It's sad, but I've tried to no end to get them to help me.
I really wish I could say otherwise!
Thank you for your concern!
Marnie...
I'm so sorry to hear about your sister!
I'm glad she has you to look out for her!
Thanks for the articles!
I really like my cardiologist, but am not sure how much they know about lyme affecting the heart, so I'm going to print them out, so I can, at least, try to educate them.
I'm hoping and praying my primary care physician will call me back tomorrow and send me back to them, as soon as possible.
I really think they've become immune to all of the problems I have from my lyme, so when I have something serious come up, they just don't react as quickly as they should.
As upsetting at it is, I've searched to no avail for another one, so as far as I can see, right now, I have no choice but to stay with the one I have.
I am in the hands of a very wonderful LLMD though, which is quite comforting, although I really wish I didn't live so far away from them.
I'm going to see if I can get some meals-on-wheels and church help tomorrow.
I'll be sure to keep asking for help, albeit it's hard when I'm feeling so lousy and to keep hearing ``sorry, but we can't help you'' or nothing ever comes through, when they say they'll try.
Thanks for your advice!
nenet...
Thank you for all of your encouragement and advice!
It certainly helps me for you to share what you've learned.
I especially like the one about breaking things down, as I do feel rather overwhelmed, at the moment.
I'll see how much of it I can manage to put into practice, because I think you have some very good suggestions!
sunshinyday...
Thank you for your concern and prayers!
randibear...
Wow!
I honestly don't have any words to express my gratitude!
All I really know to say is thank you from the very bottom of my heart, although that doesn't even seem like enough.
I'll send you a private message soon!
Bettyg...
Thank you for all of your love, care, concern, and encouragement!
I'm not sure if United Way can help me or not, but I'll see what I can find out.
As for contacting the secretary or minister of the church, which I used to attend, I doubt it will help.
Last time I asked them for help, sad, but true, they said they'd have to be millionaires to help me, so they chose to do nothing for me, instead of something.
I can't even begin to understand the way those in my church, as well as my bible study class, have just pushed me aside, knowing I need help, with a few promising me they would help me, yet none of them followed through.
I see no sense in trying to force someone to help me, who doesn't want to.
In time, I will be sure to give back what I've been given to help those who are walking in my shoes.
Thanks for helping to carry my load, right now!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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bettyg
Unregistered
posted
jennie,
thanks for your update on things and responses to people's suggestions/ideas, etc!
posted
You're welcome, Betty! Thanks for your ongoing encouragement!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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