posted
Hello. I've read often but only recently started posting. It was suggested that I post my story here, so here goes. (I tend to get long-winded but I'll try to keep it short.)
Married in '97; bought our first house in December '98, plunged into hell shortly thereafter. It started with not being able to get out of bed one day. We'd just moved not only to our first home, but also had moved our office. We lived out of boxes for a week while we put in 12 - 14 hours days, so I figured I was just overworked & overstressed. Got fired. Oh, well, wasn't really happy there anyway.
Got a little better, then started having Vertigo so bad I had to hold on to walls to keep from falling down. Had Vertigo several years before, so waited for it to clear. Needless to say, it didn't.
About a month later, the headaches started and this unbearable pain that traveled down my spine. Nothing eased it - not Tylenol, not Advil, not Aleeve, not hours in the hottub. Nothing.
Eventually, it became tolerable, then the fatigue and all the bizarre symptoms started - lumps on my fingers, a buildup of mucus in my throat until I was choking from it, my eyes burned, I couldn't carry on conversations with people because the effort to pay attention and think to answer was exhausting, I could no longer balance my checkbook, I couldn't dial phone numbers without misdialing several times, and the list goes on.
Two years later, I received IV Vitamin C therapy, and after a year, my body returned to normal. I could stand up straight again, I could think, I had more energy than I ever remember having in my life. I was told I'd had a Systemic Viral Infection, and I was out of hell for good.
For 3 1/2 years, life was good. We had some marital trouble, and I worked too hard, but I was managing. Then, we had a very traumatic year, and I started slowing down. I was so tired after work I could barely function. I started having to spend half my weekends in bed.
I started to get a little better with the help of some supplements, but then I had a bad fall, and my health went downhill from there. Marital stress came to a head, and we separated. I started feeling better, so I assumed once again, stress had worn me down; however, my marriage has healed, but my body is continuing to decline.
I am ridiculously tired, my brain is so foggy planes wouldn't dare try to take off, I can't make decisions, I've had to take a leave of absence from work, I have strange rashes, my eyelid sometimes twitches so bad it hurts, my eyes burn, etc., etc., etc.
I have finally been diagnosed by an MD with Lyme Disease, big surprise. The first month of treatment, I felt like a Zombie. I don't really even remember that month. The second month, my digestive system couldn't tolerate the Antibiotics, so I am preparing to start IV Antibiotics soon.
My biggest frustration is I feel like I don't know what to expect from treatment. According to what I've read in Burrascano's guidelines, I never should have stopped the Antibiotics, only cut down the dosage, but every call to the Dr. costs money we don't have. We haven't even figured out how to cover the IV. I feel lost. I was never good at planning meals, now it's impossible, not to mention I don't have the energy to cook, so my diet is very poor, which I know is not helping matters.
What I'm looking for is someone who can give me some idea of what recovery looks like. How do I know if I'm having a never-ending herx or is a herx is an on-again off-again type of thing? Are there any easy, healthy meals? How in the world do I give up breads when it's a staple in our diet? And worst of all, how the heck am I supposed to give up chocolate?!
Thanks for reading. I hope it's not too long. I warned ya'll I tend to be long-winded.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Welcome! Everyone of us here is either in treatment or finished treatment for lyme. No two stories are alike. I can only tell you what my experience has been.
Initially starting antibiotics, I had an emotional herx...in bed crying all weekend. That subsided and other symptoms flared. I am still in treatment now, and although my symptoms still flare during a herx, nothing compares to the hell I was in before starting treatment in April.
I have come a long way, but the progress has not been overnight. Most will tell you lyme treatment is a marathon and not a sprint. No wonder I never liked running...but, I am slowly getting there.
If you have disseminated/chronic lyme you will need to expect to be in treatment awhile. Yes, you feel worse before better...but that is a sign that the antibiotics are doing their job.
My diet is not the greatest either. But I dont drink or smoke. A good multivitamin is helpful. Probiotics are essential (florastor at walmart). I eat a lot of salads and drink a smoothie daily consisting of kefir, frozen fruit, protein powder and maybe a little liquid multiple vitamin. It does not taste great, but it is healthy. My husband grills out several times a week to make it easier for me.
IV has helped me a lot. If you are only persuing IV because of GI intolerance, Bicillin LA injections may be another option. They are very effective, hurt quite a bit, but combined with a macrolide and a cyst buster works great. THat is my plan once I finish IV. The only reason I went to IV is because all my symptoms are neurological with brain lesions on MRI.
And no, I have not given up chocolate...just in moderation.
Posts: 747 | From Utah | Registered: Apr 2010
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I feel your pain. I was very sick with lyme all my life but didn't know it. I was finally diagnosed and am on the road to recovery.
I won't sugarcoat it. It is hard and long if you've had it awhile (me, over 20 years) but I'm starting my third year of treatment and am at about 80%. I am thrilled with my progress from where I was at.
Also, about the expense, if you are willing and able, my prescription plan will pay for all the drugs in powered form (you have to mix it yourself) but they provide the bags, saline, heparin, syringes, etc. I never would able to afford it if I didn't do it this way. Maybe you have a friend who is a nurse or a pharmacist who could help you the first time. It's old hat now for me.
Don't give up, things will get better. I think the diet is important though. When I don't eat the way I should, I feel like crap. It just isn't worth it. I do have a piece of chocolate every now and then
Good luck, you will get well!!
Posts: 298 | From usa | Registered: Aug 2009
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Thank you for your encouragement. I did about 3 weeks of the IV as well some IV Vitamin C and started to feel better, finally! But the expense has become prohibitive.
I am trying orals again, but my digestive tract is really suffering. I'm trying to improve my diet in the hopes that that will help.
My husband helps out sometimes with the cooking and with alot of the housework, but the cooking is mostly my reponsibility. Does anybody have suggestions for quick, easy meals?
Thanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I think I'm going crazy. In the last year I have been told that in order to get well, I should:
Get myself right with God. Illness comes from the Spiritual Realm.
Eat only raw foods. The body is designed to heal itself if you feed it right.
And most recently, you don't really have Lyme, but here, try this new drug that works to restore the chemical balance in the brain, and that should help you feel better. Don't know what's making you so sick, but try this anyway.
And the worst part, is my husband agreed with this Dr. and does NOT want me to do anymore antibiotics. The Dr. who said I DO have Lyme said I need to go to the PICC line since my stomach is so messed up from the antibiotics.
I only saw this other Dr. because I ended up in Urgent Care twice in the first two weeks of January, and the Dr. there suggested this Dr. as a primary care physician. From how the Urgent Care Dr. described him, I thought I'd give him a try. Now I wish I hadn't. I'm so mixed up, confused, depressed and frightened, I don't know what to believe anymore. I don't know who to trust or what to do.
Sometimes, I CAN talk myself into feeling better. Sometimes I think, "I haven't had any nausea (or joint pain, or headaches, or whatever) in a while," and poof, the blasted thing reappears. Then I think that I am somehow making myself sick. I am so close to finding a mental health facility and just admitting myself. I can't take this anymore! Am I crazy? Why do I sometimes feel great, and moments later, I'm miserable? How come I can be miserable and "perk up" when doing something I enjoy, and then go right back to being miserable after the activity is over?
Is this thing for real? My test results from Igenix came back indeterminate on two out of the three test they did. With all the false results, what if this last Dr. is right, and I really don't have Lyme, but am just suffering from some goofy brain chemical imbalance?
I just don't know anymore what to believe or who to trust. I want to just give up. I don't want to fight anymore. I don't even know what I'm fighting! How the heck are you supposed to fight back when you can't even figure out who the enemy is?!!!!
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You should find a doctor who specializes in Lyme treatment. If there are certain things you are looking for, ie, someone who understands herbs, etc., then put that in your post in seeking a doctor.
You can get better from this. It takes persistence.
Also, I had GI problems. I had to take VSL#3 if I was on abx. It is a very strong, pharmaceutical grade probiotic. $$$ but without it, I could not take the abx.
Hang in there, and keep reading and researching. What you do on your own for detox, diet, exercise, etc., is important, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Also, if i were youI would resume the IV vitamin C therapy as it has helpe you once get your energy back so keep doing it while treating. Don't forget to pay attention to your detox.
Posts: 723 | From Montreal | Registered: Oct 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Vitamin C is great but you most likely have a lot of bugs to kill.
It took me a yr. of many different antibiotics to see a fork in the road...
Do what you have to today to be there for tomorrow.
You must become a fighter to win this battle.
It is not much different than Cancer--in fact I think its much worse...
So get your battle gear ready to rock(probiotics/yeast protection/antiviral preferences) , arm yourself with lots of knowledge(things to help with herxing and detoxing), and start killing all the critters who now call you- Home...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
People who say the cause of your disease is the "spiritual realm" or "diet" are idiots.
Please do not listen to them. You have a serious infectious disease.
We would all love for it to be so easy. Just fix our diets and we are well. Become more spiritual people and we are well.
It is not that easy. Often, wellness takes antibiotics, detoxing, supplements, diet, rest, stress management, exercise...
Some add Rife, energy medicine, bodywork, prayer, support groups, positive thinking...
But it is never as easy as fixing your spiritual life or following a raw food diet, and anyone who tells you that is ignorant and insensitive.
Nobody wants to think we are actually going through the life-altering challenge that is Lyme disease. They want to think it is easy. We just follow some simple piece of advice (that we would NEVER have thought of on our own) and we are well.
But Lyme is a life-altering challenge, as you've experienced. You can get well. Read. Learn. Listen to those who have been there. (Like us!)
Disregard those whose advice rings false to you. And you will know. Trust your gut and your intellect.
Many will be doctors. Guess what? They don't know everything! When it comes to Lyme, often they don't know anything! But they will give you advice anyway, because that is their job!
I'm glad your marriage is better, but it sounds like your husband is someone who wants this to be easy. Bummer. You will have to stand up for yourself. It is difficult, and draining, but worth it.
I didn't get on my Lyme path until I had a HUGE fight with my husband in which I declared that I was not going to live one more year as a sick person. I found my diagnosis and my doctor and I've been on antibiotics ever since.
And guess what? He has Lyme, too! He was happily ignoring both of our illnesses.
The cultural pressure to ignore our health and just function is relentless. Oh, it's OK to exercise or go on a diet. But to actually be sick and require extended treatment? That does not go over with people at all.
The people in my life spent 15 years telling me I was fine and I just didn't know it. Doctors said the same thing. I can't believe the effort some people put into talking me out of believing I was sick. It was offensive, but it worked. I ignored my symptoms and plowed through life for over a decade.
Don't listen to these people. You know there is something wrong. Let yourself believe it. And let yourself get well.
Watch Under Our Skin with your husband. Many times.
Read Cure Unknown with your husband. Many times.
And find a good LLMD. I couldn't tell from your post whether or not you are with an experienced doctor.
As for not knowing what to expect from treatment - HA! If that is your biggest frustration, just wait until you start herxing. And hit walls in treatment. And can't get off the couch. You'll have so many new frustrations.
Treatment is different for everyone. Expect some challenges and set-backs. But plan to commit to getting well. Whatever it takes.
You may have to quit bread. It's not that big a deal.
You'll figure out some easy meals.
Try not to freak out before you've even begun. You can't begin to know what to expect. And you can't control all aspects of this disease or your recovery. Take each day as it comes and stay on the path.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Amy's Kitchen makes some gluten-free foods that are easy to prepare (microwaveable frozen foods, canned foods you can just reheat on the stove) that taste pretty good. This food company is picky about their food quality - they strive to use as much organic as they can, and their recipes are reasonably healthy.
I know there is more I could post about this, but my brain has shut down for now. I hope this one suggestion is helpful...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Thank you, everyone, for your comfort and reassurance.
Please forgive me for not responding to everyone individually. there was a time I could, but not anymore.
My husband's biggest objection to the PICC line is the danger and all the unknowns. He feels it should be a last resort. I tried to tell him we're out of options, but he wasn't hearing me.
He has agreed to meet with the Dr. himself to get his questions answered. We'll see what happens.
The Dr. who suggested the PICC line claims to be a Lyme Literate MD. I've asked over in the seeking Dr. section how to find out for sure.
I was seeing another self-proclaimed Lyme Literate Dr. for several months, but I just kept getting worse, and many concerns came up that made me doubt this Dr.
I'm not so sure about this second Dr., and I've consulted an ND who says we can treat this naturally, but with weekly IV's, alternating Vit C with Silver and something else.
Everything is so expensive, not covered by insurance, and i've had to quit my job. We have to pick one direction and stick with it, and I'm not sure which direction is the right one.
Any help would be greatly appreciated. Thanks!
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I see some of this is old, so i'm asking, do you still need help with meals? I can't help you with anything else, but cooking I can do--I recommend the crock pot. Put it in and forget it. Make enough for a crowd and freeze it. I can get more specific if you like. Good luck!
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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Well said, Boxer Mom!!!! I think you covered it very well! The biggest thing for me was finding a very well known and well respected LLMD. He is a researcher at two major research centers, has written countless papers, treated thousands of lyme patients. He costs a fortune and I give up everything except food to pay for him.
He said that he worked on early AIDS research and the politics was the same then as it is now for lyme disease....or tick borne illnesses, I should say. Work with the top doctors in this field, ignore all the rest of them and the ignorant people who think they know what you are going through. They don't.
Test results are important but are not everything. The biggest indicators for me are the measurements of my immune system (T cell count), complex thyroid tests, C4 test, and a few others I can't remember. But you must have an experienced doctor to make the clinical diagnosis....this is not easy to sort out!
Medicare does cover my local pain doctor and she supports caring for my symptoms, cooperates with my LLMD, helps in every way she can. She may wind up handling the IV's for me. She is delighted with my improvement....she cared for me when I was in a wheelchair, on oxygen, etc.
After 22 years of this mess, our savings are long gone. Now we are fairly sure that my spouse has it, too, and we are trying to find a way to pay for two treatments. We were told that our doctor treats at least 150 couples.
I had no luck with a PICC line and wound up with a port in my chest for 6 years. Now my LLMD said that he can put a small catheter in my chest, it is not a big deal and is quite safe. I saw many people with them at a lyme conference I attended.
Bicillin shots were great for me. I made lots of progress, but then I stopped. So now I am on Flagyl and Ketek with terrible herxing. But I am ramping it up gradually, getting a little help with acupuncture and hanging in there. If, in three months, we do not see significant improvement I will have to find a way to get IV Rocephan.
A final suggestion: hang out on the Support section of this discussion group. You will read about others just like you who are being told all kinds of nonsense. It is pretty funny when I listen to all of it and then reply, "wwwwwelllll, IIII willll ccccertainnnnllly tryyyy..." My speech is awful, and when I am stressed it gets even worse. My hands shake, I repeat myself, I can't follow a conversation...it is downright embarassing! But I have learned to handle it, and even enjoy watching the startled reaction of those expert advisors!
Stick with us, with supportive friends, and don't waste an ounce of your precious energy on negative people or thoughts! It just isn't necessary!!!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Beth, Yes I would still appreciate some help for some easy meals. I'm new to Crock Pot cooking, and the few meals I've tried have been edible, but not really all that great.
quote:Originally posted by BoxerMom: Keep treating your Lyme. You probably do have a chemical imbalance in your brain - from the Lyme!
Good luck and keep going.
My husband and I just went another round on the Positive Thinking front. He still thinks I need help coping. He may be right, but I will not put my life in the hands of a Dr. who doesn't think Lyme Disease is what's making me sick in the first place! Been there. Done that. And all I got was another year of my life lost. Thank you Boxer Mom, for reminding me that Lyme can mess up your head, too. It gave me another line of defense.
Thank you, Farraday, for your support and encouragement. I have to keep reminding myself that Lyme Disease is real, and that I really have it. It just seems so unreal.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Easy formula for crock pot: put in some meat (chicken, beef, pork),put in some veggies,(carrots, onions, potatoes, just about anything) put in some liquid (condensed soup, broth, water, or any combination of these) Cook it on low for 10-12 hours. That's it! I'll PM you with more specifics. Good luck!
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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Hi, Beth22, I never received your pm. Silly as it may sound, I need specifics. I'm not a very creative cook. I can follow a recipe, but am not comfortable with the "make it up as you go" method of cooking. Thanks!
We're kind of at a stand still treatment-wise. My husband wants me to go back to the Dr. who treated me years ago, but we're not having much luck getting in touch with that Dr. We did try another Dr., but were told since I'd already been to a Dr. who claimed to be Lyme Literate, there was nothing more he could do.
I can't think clearly enough to figure out what to do. My husband got off his positive thinking soapbox, and is trying to help as best he can. The problem is, he just doesn't know enough about this disease. I have the knowledge, but no working brain cells to sort through it.
Does anyone have any suggestions for an easy, inexpensive anything that can help my brain clear so i can navigate these treacherous waters?
Thanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Are you taking B vitamins and magnesium? I just started treatment for lyme this week but have been using vitamin supplements for months. I mention because though the brain fog is thick, it did clear a little by adding vitamins to my life.
I love using a crock pot. Here's a specific one:
3-4 lb. roast 1 can soda, I like to use a cola for the flavor 1/3 c. ketchup 1-2 tbsp. worcestershire 5-6 peeled potatoes, cut into chunks 1/2 lb. baby carrots or sliced carrots 1/4 c. chopped onion 1 tbsp. minced garlic 1 tsp. salt 1/2 tsp. pepper
This should help you start, and after using the crock pot a few times you may feel more comfortable making subsitutions to change flavors (or create things that may be easier on your stomach, I only make this for my family at this point and eat a salad).
The key with crock potting is use the low setting when possible and do not add too much liquid. The meat should not be covered by liquid--common misconception.
Betty Crocker has a mini cookbook devoted to crock pot recipes and there are many on the internet as well.
Good luck
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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This is SO easy, SO yummy, and will make your house smell like Heaven!
I LOVE LOVE LOVE LOVE LOVE my crockpot, and you will too.... it is the best friend for those of us who have a hard time standing for any length of time, and tend to be forgetful.
Crockpot Roast Sticky Chicken
1 tsp. salt 2 tsp. paprika 1 tsp. cayenne pepper 1 tsp. onion powder 1 tsp. thyme 1 tsp. white pepper 1/2 tsp. garlic powder 1/2 tsp. black pepper 1 large roasting chicken
(NOTE: I didn't have any white pepper so i used a total of 1 tsp. black pepper instead)
Place in a resealable plastic bag, seal and refrigerate overnight. ( If you forget, don't worry about it. Just get the spices on the bird and stick it in the crockpot, it'll be delicious!)
When ready to cook, put the bird into the crockpot and do not add any liquid. As the cooking process goes on it will produce it's own juices. Cook on low 8 - 10 hours and it will be falling off the bone tender.
My kids like it when I add cut up potatoes and baby carrots under the chicken.
I like to make up a HUGE batch of the spice mix, and keep it ready to use. It works well on any piece of chicken, in the crock pot or the oven.
Posts: 25 | From Denver, CO | Registered: Jan 2011
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Thank you so much for the recipes! I'll give them a try as soon as I can!
As far as vitamins, I'm not taking anything right now because my stomach is so tender. I think it's an intenstinal problem. I wake up with pain on my left side under my ribs. During the day, sometimes, the pain is lower and centered under my navel. A trip to the bathroom usually alleviates the pain.
I'm trying something a friend suggested to help the colon heal ~ when i remember to take it. I haven't been taking any vitamins for several months due to the pain. I can usually pinpoint what starts the pain, but it takes weeks of takig nothing to get it to go away.
I'm not seeing a Dr. right now, because we're still trying to find someone we're both comfortable with, so I'm kind of on my own.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I had stomach problems like you describe for years. After the first month of treatment for Lyme/co my stomach pain, etc. was much better!
At first I didn't tolerate the abx/vitamins but found that taking Probiotics helped. Like others have said, Florastor and Theralac are two I must take everyday (+ several others). They are expensive, but a must if you have stomach (or abx) issues.
I've found I can not tolorate sugar or white breads/pastas. The consequences are not worth the moment in the mouth pleasure!
I hope this helps you and that you can quickly find a LLMD that will listen and care.
[ 03-24-2011, 08:52 PM: Message edited by: DKat ]
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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I've been trying different probiotics. I'm kind of on hold until my tummy settles down, then I'll try again. Today, it's finally feeling better! Yeay!
Why do you take two probiotics?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I learned the hard way to take good probiotics. Within 2 weeks of abx, thrush & yeast appeared big time! I was barely functioning through the herx/lyme & co. nightmare and that tanked me.
My LLMD did initially tell me to take probiotics and recommended Florastor. I was taking a generic probiotic. After researching, I've found Florator and Theralac both well rated. VSL#3 is too.
Each probiotic has different strains of good bacteria. I try to add as many different strains as possible to replace what the antibiotics have taken.
It's worth the expense for me. I do not want the stomach/yeast type issues back.
I'm so glad you're feeling better! Being able to eat is a blessing.
(This is what worked for me, I know everyone is different and you will find what's best for you.)
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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Can anyone give me some imput on the following:
PICC Line
Hydrogen Peroxide Baths
IV Hydrogen Peroxide
IV Silver
We're trying to figure out which is the best route to go. My husband has come around to the PICC Line idea, but now I'm too terrified to actually do it! I'm not too thrilled with any of the other options.
My energy has picked up since I quit working, but sever pain in one of my ankles has put my life on hold. Limping irrates the other ankle and knees, and sometimes, the pain is so excruciating I can barely walk.
I keep trying to get back on supplements, but the progress is very sloooooowwwwww. I have an appointment to meet with another Dr. who is knowledgeable about supplements as well as antibiotic therapy, but we can't get in to see her until June at the earliest.
I'm trying to figure out what to do in the meantime. Can anybody help?
Thanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I just got the PICC in three weeks back. The arm was a little sore for three or four days. Bruised. But now it is fine. I have to take some extra care in the shower. But overall it is simple to manage. I infuse while I am at work.
And for now, though I am wiped out tired at times, I feel improvement in general.
I felt fear for a short time before the procedure. But I also felt excited.
With this sickness you have to take control of what you can and do with it the best you can. I was and still am glad I did.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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Thank you so much for the encouragement! I feel a little more relaxed about trying it.
Does anyone have any input on hydrogen peroxide baths? I've done a search, but it looks like everyone uses 3% hydrogen peroxide. A Dr. gave me some very concentrated hydrogen peroxide to us. I can't remember for sure what the concentration is, I think it's 35%. She said I have to be very careful not to get it on my skin or it will burn. She suggested using 1/2 cup in a bath. I'm reluctant to do it because I'm concerned it might be too much. I could always use less of it, but it seems what she gave me is much stronger than anything anyone else has used.
Thanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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quote:Originally posted by jmb: I just got the PICC in three weeks back. The arm was a little sore for three or four days. Bruised. But now it is fine. I have to take some extra care in the shower. But overall it is simple to manage. I infuse while I am at work.
And for now, though I am wiped out tired at times, I feel improvement in general.
I felt fear for a short time before the procedure. But I also felt excited.
With this sickness you have to take control of what you can and do with it the best you can. I was and still am glad I did.
Thank you so much. We have finally decided to go ahead with the PICC Line. We're just waiting for insurance approval. Like you, I am a little afraid, but also excited. I have been off antibiotics since Jan., and haven't had that many good days since.
I feel miserable in so many little ways, that i feel like my body is being overrun. I am such a coward when it comes to medical procedures, and am so hypersensitive to pain. Does anybody have any suggestions for what I can do to minimize the pain during the procedure?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I don't have a PICC but I have a port. At first I was very nervous about putting a foreign object in my body. After the procedure, I felt uncomfortable and did have some pain, I thought I had made a mistake.
I now don't know what I would do without my port. Once you get used to the PICC you will understand why it makes sense.
As far as pain is concerned, I just pushed through. I think the doc gave me some Vicoden.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
When is depression just "part of the package" with this stupid disease that will pass with treatment, and when is it a warning sign that I need some real help?
For the last two weeks, I don't feel like doing anyhting. I don't want to go anywhere, i don't want to talk to anyone, I just want to dissappear. I'm not taking anything for the Lyme or for depression.
In addition to this "fun game" of Lyme, my husband and I are also suffering from Infertility. Although, I think I'm suffering more than he is. With Easter and Mother's Day so close together, i'm having a really hard time coping. I'm 40 years old, too sick to work, and can barely take care of myself. Life seems so darned stupid and worthless and hopeless.
I'm hoping to get the PICC Line in this coming week, and am relieved to finally be fighting back again, but I've lost over a decade of my life to this dumb thing called Lyme, and I'm not getting any younger.
We have no idea how we're going to pay for treatment, and having a child will take either a miracle of God or adoption, which will also have to be a miracle as we're going to be "robbing Peter to pay Paul" just to pay for my treatment.
I can't believe I'm facing another Mother's Day with empty arms and being this sick!
I know enough about depression to know anyone in my shoes would probably be depressed. What I need to figure out is if this is one of those things that will pass when I finally start treating the blasted Lyme, or had I better give my Dr. a call?
Can anyone help?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
a lot of lymies use anti depressants at least for some time and find them helpful
some of us try to use them and have bad reactions...not a help for the depression
we are all different-but most docs these days seem really open to prescribing them
you can search depression or anti depressants and maybe get more specific help
or just start a new post with the word depression in it...
i'm one that can't use them. the new ones anyway. but 3 times in my life i did go on older anti depressant drugs for a short time.
i'm sorry about your struggles. i have been struggling with depression since feb. i think it was related to a bad herx. these holidays have been really hard. but so was christmas.
i have 4 kids but spend many holidays alone . they all had lyme and got txed. i gave it to my last one thru the placenta and breast milk. i don;t want to be the bearer of bad news...but if you are as sick as you are you will have to work closely with your doc and maybe at least consult with a lyme pediatrician to prevent the babies from having lyme.
raising kids with lyme is hard but not impossible. i make a point of telling ppl that all of mine are now doing pretty well-working and with good mates.
many of us talk about our struggles with that on here too. maybe another search.
good luck. you sound determined and you will need to be tuff.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You might want to look into the salt/c protocol since you do so well on IV Vitamin C.
Also after 4yrs of abx, what turned the corner for me was antiparasitic herbs in combo with salt/c. Most docs do not realize that parasites/worms can be one of the co-infections of Lyme.
Do a search on here for parasites and salt/c. Also visit lymestrategies for other alternatives as well as abx.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you for your replies. I ended up in the ER a week ago with a terrible headache. They told me it was a tension headache. The Dr. was very nice and asked me if I'd been under any stress lately. Monday of last week, I had a full-blown panic attack and couldn't stop crying so I did finally call the Dr. He prescribed xanax. It helped me get through the PICC Line procedure, but it completley wiped me out. Hard to believe i could be any more tired and non-functiioning, but that's what happened.
So I'm not taking it, but my mood is better now that I know I'm getting some help fighting back, and no longer just a helpless victim of this disease. Next time I meet with the Dr., I will probably ask for some help with coping.
Gael, I tried oral Vitamin C and I couldn't tolerate it. One pill made my abdomen really hurt, but from the search I did, it looks like parasites could be what's causing the digestive trouble. Did you deal with the parasites on your own or with the Dr.'s help?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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![[Roll Eyes]](rolleyes.gif)
The first month of treatment, I felt like a Zombie. I don't really even remember that month. The second month, my digestive system couldn't tolerate the Antibiotics, so I am preparing to start IV Antibiotics soon.![[dizzy]](graemlins/dizzy.gif)
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![[Frown]](frown.gif)
![[hi]](graemlins/hi.gif)
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Thanks!![[Smile]](smile.gif)
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I'm not too thrilled with any of the other options. 
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