posted
I have had a very tough month and now have decided to jump in with the IV. I will also get my amalgams out probably in late fall-if all goes well.
Anyone else besides JeffM starting Rocephin and will give support and advice as the big herxes roll in? I am pretty scared here.
Thanks! Kim
-------------------- We are spiritual beings on a human journey...
posted
My adult son will be starting next week. I hope he will tolerate this better than the bicillin.When do you start the Rocephin?
Posts: 488 | From NY | Registered: Oct 2004
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I started rocephin 8 days ago. After my first dose my vision got brighter. I can keep my eyelids open and I am walking much better. Today I am very tired and get out of breath easily, which is also one of my symptoms.
I might be starting to herx, to early to tell.
I took rocephin five years ago. From what I can remember it was around the second week that the herx started.
Good luck, and stay in touch
Posts: 175 | From Pa | Registered: Aug 2006
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DH starting rocephin probably in 2-3 weeks. It should be a roller coaster ride, but hopefully beneficial. After 15 mths of orals, dtr wants to go IV. DH is not real excited as he works outside alot and is concerned with heat and aggrevating line
We are certainly going to try it.
Posts: 7 | From Duplessis, LA | Registered: Aug 2006
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I get the line put in tomorrow. My biggest symptoms right now are bladder pain, heart/eyes/neck/jaws/shoulder pain, joint pain, nausea, headache, confusion/depression.
Kat, glad to hear you have your head above water after 8 days...let's hope you just keep getting better.
Will anyone be on additonal abx or alternative treatments at the same time? My mom told me I should do HBOT to help with herxing...
Best, Kim
-------------------- We are spiritual beings on a human journey...
Right now just rocephin nothing else. I think I am building up to herx. Feel very achey today. I just need to keep reminding myself of positive improvements already.
I just don't have the patience for this because I have two boys 13 and 10. Thank God I have a great support system at home with family, friends, and neighbours or I think I would lose my mind.
We need to keep moving forward regardless how hard it might be at times.
I'll keep you all updated with my progess and you do the same.
Good luck
Posts: 175 | From Pa | Registered: Aug 2006
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Rocephin twice in the past 3 years no biggie 9 months ago last treatment seems to be coming back last week blood neg pcp wants me to go back to id doc ???????????????? kness. bad shoulders, elbows could be worse?????????????? hate those germlins
Posts: 5 | From nj | Registered: Aug 2006
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Stopped taking morphine 2 days ago. The pain can be treated with tylenol or tramadol for the first time in 3 years.
I think this is working.
The only question is have is whether I should keep taking flagyl. It is not kind to me.
But people here say there are relapses on rocephin because it causes the spirochete to go into cyst form. Once the course of tx is done, out they come, and one is sick again.
However, I am NOT looking a gift horse in the mouth.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Me Too!! My line was put in yesterday and I've had two infusions. So far so good. I actually feel pretty good except I'm still a bit squeamish knowing where that catheter is!
I'm also on Azithromycin every other day along with the Rocephrin. I'm also adding a multi vitamin, B complex and Milk Thistle (I have elevated liver enzymes) along with the acidolphylis in addition to the Advil and Prednisone I'm currently taking. Phew! That's a lot of pills! (The Prednisone is a very low dose and will be weaned further into the IV therapy.)
karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Not sure if this is a double post as somehow I lost the first one..
I have been on IV Rocephin for two weeks..My symptoms are mental fog, fatigue, minor tingling and pain, low body temp, low mercury, hypoglycemia, low adrenal function, and low testoterone... with drugs there is a little more pain and tingling, more fatigue, and mental confusion. I take 2 mg every day and then azithromycin on M,W,F ( 1 pill) and flagyl (3 pills) on Sat and Sun. I have heard that flagyl is needed to break uo the cysts .. otherwise lymies are protected and come back...
Oh, my dr. (Dr. S) did not give me Actigall initially but after I asked for it.. prescribed it to me with out a question... so, I take that too.. (fyi: I had gallstones before I started LYme treatment).
I am also following Dr. B's guidelines for vitamins and supplements.
Lets all keep in touch..
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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I got the picc today. It hurt a little going in but now I am okay, just feel weird in my arm to chest area. I am afraid of bathing but will do it soon.
Tomorrow a nurse is supposed to come to my house and teach me how to shoot up (once a day). A big bag of syringes and dressings were dropped at my house today (I feel like an addict).
When should I take my theralac if the abx is always in high gear? I guess bedtime...
So we need to talk about flagyl. Also, my doc said no way to the actigall cause of liver issues and he doesn't see gallbladder probs too much...I'm not up for that fight with him right now.
But Flagyl...I hear of so many IVers who relapse and I bet adding flagyl is a good idea but my doc will probably fight me on it... I don't remember reading about adding flagyl to IV in the ILADS guidelines....
-------------------- We are spiritual beings on a human journey...
I am so glad you got your line in. Welcome my sister. I am not taking flagyl either, and i am not so sure i want to. I've heard things about nerve damage that is not repairable.
What is theralac?
What iv meds are you taking.
Posts: 175 | From Pa | Registered: Aug 2006
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I am not taking flagyl right now, although I am worried about it. I want to talk to my LLMD. I think last month the flagyl caused some serious damage to sexual functioning. I am up in the air about it, and consulting my LLMD and urologist.
I also have this near constant tingling / vibrating. I wonder if that is neuropathy caused by flagyl.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Theralac is the mother of all probiotics. I take one a day - 40 bill organisms/ 20 guaranteed.
People swear by it and it simplifies the issue for me only taking one...although I sneak in others when I remember...
Don't know how effective any probiotic will be on IV since you don't really give the gut a break but I will take it at night and stay on strict no sugar diet.
Last night was a bit rough. Pain in the arm where picc is and chest. Also some old pains are back from the past...hands and feet sore, ears and neck, teeth, bladder pain.
Another weird thing is a dull ache under my left lower rib cage. (Is this the gallbladder!)
Is anyone working, excercising or able to function normally? I wonder if I should throw myself back into life to make this nightmare pass more quickly. (Although I will probably crash and burn in five minutes.)
Kat, I am only injecting the rocephin right now through the port...should I be sticking something else in there? heroin?
How about massages or HBOT or ozone tents, voodoo...anyone doing stuff to make the abx work better?
I took a bath last night--omg what a joke. I wrapped the thing with saran wrap and taped it to my arm, got in the tub keeping my wound in the air. Then tried to shave my legs with one hand.
This is when the tears came.
I may be able to live with excruciating pain, mental confusion, and no sex life, but hairy legs???
I did a half a@# job and called it a night. I will try again tonight if I haven't driven my car into a tree.
Thanks for indulging me in my self pity whining but I know you all get it (except the guys and hairy legs).
Stay strong, (or at least stay alive)
Kim
-------------------- We are spiritual beings on a human journey...
Wait till you try to shave the opposite armpit from the picc line. Now that's what I call a good time.
I am still infusing away. Yesterday I actually made it out among the living. I went to the pool with my kids and a girlfriend and her kids.
Today feeling very achey, and having pain. See my llmd on Sat.
Thanks Jeff for the info on flagyl, it makes me nervous. I wonder if tinidozle has the same side effects.
Posts: 175 | From Pa | Registered: Aug 2006
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I get tired and achey, a little. However, I have been off morphine for five days. No withdrawl, and the pain it was medicating is gone -- to the level that I only have to take tylenol (or once, tramadol).
My daughter also gets very tired and achey, but mentally she is better than she has been in 3 years.
fingers crossed
those of you who warned me: yes. Insurance is challenging, after an initial approval.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I am so happy for you and your daughter. It is encouraging to get improvements. So thankful you did not have any withdrawl symptoms. I have a girlfriend who was using the pain patches for lower back problems. When she stop using them she had horrible withdrawl.
Posts: 175 | From Pa | Registered: Aug 2006
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Thanks so much for the response. I still cant believe how well I am doing on this rocephin stuff.
I was only on a tiny tiny dose, once in the morning, of morphine, so stopping apparently was not a problem. My daughter is on those patches and goes into terrible withdrawl if she runs out.
I am surprised myself that I didn't have more trouble. I would never recommend to anyone to just stop, but to titrate down.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I will tell you my experience with Flagyl, but I think it's important to remember that everyone reacts differently to medications, and this just happens to be how I reacted.
I was on IV Rocephin and 1500 mg Flagyl daily for almost 4 months. I never really herxed. I did feel horrible, very tired, extremely depressed.
I developed peripheral neuropathy in my feet, and the pain is unlike anything I have ever experienced. The LLMD I was seeing pulled my line, took me off Flagyl, told me my positive Lyme test was probably a false/positive, and sent me packing to a neuro.
Neuro isn't Lyme literate, does spinal tap, nerve conduction test, and lastly, a Neuropsych evaluation.
The neuropathy is being held at bay with Lyrica and Pamelor.I don't eat anything to speak of, have no appetite, yet I've gained 30 lbs, not to mention the rest of the side effects of these drugs. Don't know if the damage is permanent or not (it also zapped my taste buds, and being a chef/restaurant owner doesn't help matters). It has been almost 5 months.
I've done alot of searching on the web, and have found 2 people with the same problem after taking Flagyl. 7 years later, they're still the same.
In essence, I guess it is the chance we take in trying to get better. It helps me to understand why so many doctors don't get involved.If you Google Flagyl and read the side effects, it's right there.
Good Luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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I think I am beginning to herx. Today I had shooting, stabbing pains in my heel. It was like a throbbing pain except that it wasn't constant - which made it bearable.
I've also had shooting pains in my jaw and teeth. I don't know if that is herxing...just hoping it is the result of dying spirochetes!!!
I've actually been feeling a bit better in the morning until about an hour after infusing. then I get slightly tired or a "blah" feeling. I'm still struggling with swollen hands and feet. Pretty soon it will be too cold for flip flops which are the only shoes that fit right now!!
Is anyone else having similar symptoms?
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Jilly, This is my fear of flagyl. I already have neuropathy...don't need a dumb drug to make it permanent. I have been reading about tinidazole. I will ask doc about it.
I had my third infusion yesterday. Things that are happening...
3. difficulty swallowing, sore throat (this is new). I try to speak sometimes and end up coughing- having to whisper...hoarseness
4. Entirely unmotivated -- want to lay on couch and stare into space
5. weepy (life is unfair)
6. wierd feelings of doom - like I will be this sick forever (not new--don't worry not looking for cyanide(yet))
7. learned a new shaving technique in tub which makes me momentarily happy...after wrapping and taping picc-soap leg with right hand, put down soap, pick up razor, shave section of lower leg, repeat. For thighs, get on knees to reach upper legs, for under arms, use a washcloth later at the sink.
8. gave overbearing mother a job to go looking for an arm cover at medical supply company. (this is a double good thing cause it also gets her compulsive worrying high maintanance self away from me for awile.
9. increasing feelings of worry that I am not doing enough to get rid of bugs...don't know if I should sit out the IV only or go see yet another doc to get cyst buster...
Sorry if this was too much information but it is very therapeutic to read and write on lymenet.
Blessings for a good day!! Kim
-------------------- We are spiritual beings on a human journey...
I am now on day 14. I infuse in the morning around 7am. I slept till 10am. I woke up with my legs so achey, that it almost made me cry.
I came downstairs sat on the couch for a while.
I am having a difficult time swallowing. I decide to get a cup of tea, so I decide to make myself of cup of tea.
I start to walk to the kitchen, and I start having a difficult time breathing. Now I can't hold my upper body up, and I feel like I am going to pass out.
My mother is here and I call for her and she get me to the island where I get tremors.
She gets me to the couch and now I cannot swallow at all, and I start crying.
I cannot take this disease anymore.
Human Being thank you for the giggle.
I love #8.
Because my mother is saying maybe we should go the the hospital.
I know she means well. I sent her and my youngest son to the pet store to get more animals that will get ticks and bring them into the house to finish the job, and do me in.
Just kidding, but really they are at the pet store getting turtle food, because she is stressing, and younger son is bumming out.
I love doing this to my family.
I think I am herxing. I am drinking Yogi Detox tea peach flavor. Someone told my husband about.
I have to say it does help.
I tease my mom and tell her I am trying to send her to an early grave.
Posts: 175 | From Pa | Registered: Aug 2006
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Only hurts was a total body numbness with black out fields in my left eye.
Stroke like, scary, but in my quest to stay out of ER, I laid on the floor with phone and did biofeedback/meditative breathing and thought patterns.
Just me and wheelchair kid at home, wondered if one could supersize an ambulance so we would both fit.
This episode lasted approximately 1 hour. Have not had a repeat. Was petrified.
However, when they started the tygecil and effexor six weeks ago come the 1st of September, I approximately onme week into it had 2 weeks of the worst hurts to date.
I went off the effexor last week. Did not like what it did to me.
Was on it a total of 25 days out of the six weeks. I tried it went off it immediately, spoke with my pharmacist and the good docs.
Went back on, hurtzing wicked way bad those two weeks. Total basket case and can recall very few moments.
Since then I am having some good days, which started last week. But the fat lady ain't singing yet...
But one day she will and I will be able to afford her instrumental accompiament.
I have no regrets about the PICC, just watch the home care nurses, make sure they do their jobs properly.
And if you need to escape from ER, you can, a hospital is really a get well hotel, you check in sick and check out well.
If the home health nurses are doing something nefarious, report them.
The agency I use said last time I callled, we know who you are. I said well good, now here is the next lesson in doing our jobs properly.
Remember they are bound by contract and must give you the care you want and deserve. You are the patient you run the show.
K time to boot up the Rocephin, I moved my one dailies till night time in lieu of mornings, works betterer for me.
-------------------- wpcj, Cyn Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006
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I just started IV rocephin two weeks ago. I think I had a small short herx from thurs-sun. It wasn't too bad I just slept A LOT and threw up A LOT..but nothing I couldn't handle-unless maybe I was just sick from a cold or something-who can really tell. I started with 1 gram and that wed went up to 2 grams.
do you all get dehydrated from the Rocephin? I drink about 16 glasses of water a day and I am thirsting all the time!!!!
I have a central port-my doc told me he didn't think a picc was good for me because I am 22 and pretty active (or as active as I can be)..so we went with the port. I can get it wet but not drenched and shower are still HARD to say the least.
It's kinda cool though learning about all these stuff-i mean right who else gets to have an IV pole in their bedroom-haha
Speaking of do you all have IV poles or do you have backpacks? Do you use aquagaurds for the shower because I SWEAR mine never works and I always have to re-change my dressing-
so glad you all are so lucky to have the oppertunity to have IV i have been trying to get it for 9 monthes and just got approved so yay! Hopefully this will make me all better-right?
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I'm jealous you have an IV pole!! So far I've hung mine from the dining room chandelier (I was scrapbooking while infusing) and from a nail in my wall where a sconce hangs. I've only infused at home 3 times so far - the first week was in the office.
As for the shower...my doctor provided me with shower covers. It's a plastic sleeve with elastic at both ends. I put Glad press and seal around the IV and then put the sleeve on. So far the dressing has remained dry. I have strict orders to only have the dressing changed at the office. Since the office is 30 minutes away, I want to avoid extra trips if possible!!
I haven't been thirsty but I wish I was. I have some liver issues so I really need to keep flushing my system. It's hard to keep drinking when you're not thirsty!
Good luck to you!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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What type of iv are you using that you need an iv pole?
Much better today. Legs still hurt bad, and dizzy.My sinuses beside my eyes hurt bad today. No tremors so far today or other weird stuff.
Posts: 175 | From Pa | Registered: Aug 2006
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Today was Day 8 for me and I noticed a drastic chnge in how I feel. My shoulder, jaw, hands, feet, knees, etc., all hurt terribly.
I haven't felt this bad since April or May before they started me on Prednisone. The difference is that then I still had to go to work and had a ton of responsibilities to take care of despite feeling like crap. At least now I'm not working and my husband and kids are accustomed to handling much of the household things.
The doc said it probably is a good thing I feel so awful because it is probably the meds doing their thing...that's what I keep telling myself!
Anyone know how long a herx generally lasts?
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Day 8 sounds about right for a herx. I think they can last days to weeks although mine go for 4-5 days. Some drink lemon water to help, I just sit and stare into space.
I havn't hit the wall yet but it is only day 7 for me. I am going to try to work a bit today my prob is difficulty breathing (a little like soffocation)--very nice.
Jaws/teeth/head hurts and I have no ambition at all.
My daughter asked me when the last time I washed my hair was...I had to consider this for a long time...then it dawned on me that since the picc was put in no hair washing has occurred...it has been such an ordeal to even bath in the tub that I can't really tackle the hair yet.
Hubby said he would help me tonight and wash it in the kitchen sink. (My kids are horrified that their mother's hair has not been washed for 7 days (at least)...they dared each other to smell my hair...nobody accepted the terrible dare.
The way I see it is if it isn't painfully itchy I don't fuss with it--I have enough to do.
(Sorry, I am a very tidy and decent looking woman normally).
Blessings as we put another day of recovery behind us.... Kim
-------------------- We are spiritual beings on a human journey...
posted
Day 16 for me and I could cry all day if I had the energy. My husband infuses iv for me because sometimes my hands are swollen, or my legs will jerk when infusing iv. Just not a good idea for me to do it by myself.
I woke up this morning feeling decent. Yesterday was a good day. However while infusing iv some of my most horrible symptoms came back. Right leg and left arm started moving uncontrollably. I could not swallow, and it was getting painful. Pressure in my chest. I know crying only makes it worse but i don't have the strength for this monster today.
Finally everything calms down, and now i have to go to the potty. When I try and get back in bed my left arm curls up, iv is in right arm. And now because i always use my left arm to get into bed, i start crying again because i do no know how to get into bed without use of my left arm.
My husband helps and instructs me. This is just pathetic, (can't remember spelling). I am a bright independent person who has been crushed by this disease.
Today I feel like this will never go away, and i feel hopeless. Alot of head,neck,jaw,upper body, and leg pain.
I think it's going to be a painkiller kind of day.
Oh and today is my husband's birthday. Happy Birthday darling. He got to witness all of this.
Posts: 175 | From Pa | Registered: Aug 2006
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I have a port-it's a tube that goes from a main vain right below your coller bone and then down and around your heart and out through the side of your upper chest wall.
The tube can get wet but the dressing can't-that's my problem-I mean I can't sumberge it in water but shower etc are fine.
I do a 3 hour infusion-my doc believes that it's better absorded by your body in a slower diluted incriment-it also is less stress on the tube and your body etc. I don't know if it really makes a difference-but I can for sure feel the difference if I open up my line verse if I just let it go in slowly.
I have corum home health care-Aenta is paying for 90% of this-I got really really lucky bc I had kaiser and needless to say they still don't even believe I have lyme with a positive western blot igg, igm and they certainly don't believe in IV therapy.
Corum provides me with an at home nurse, pharmasist, and supply person at which I can call and ask for supplies, questions, and the nurse will come to my home once a week and change my dressing. (i.e. they gave me the pole)
It's pretty amazing bc I went from a health program who thought I was this nonsense speaking troubled bulimic college girl who need pysc therapy to an insurance company willing to pay for so much!!!
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I took rocephin IV for a year. Along with Zithromax with a six week course of Flagyl in the middle. At that point my HX were so bad already that I didn't notice the difference. What I do know is I started to get better after about 2 months. Alot better. You would be surprised what you can do in the bathtub if you put your mind to it. I showered with my arm held out to the side so it would not get wet for a year. You can make it through the Hx. I know you can, after all what choice do you have to get yourself better. Just keep doing what you have to and try and keep a positive attitude. And vent when you need to. BTW, If you are going to be on Rocephin long term, I reccomend having you doc keep an eye on your gall bladder, I lost mine.
Posts: 2 | From Lodi, CA | Registered: Sep 2006
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Day 9 for me now. I have moved from a 4 to a 6 on pain and fatigue chart. Mostly breathing/head/eyes/jaws/chest/groin/lymph underarm. I am getting out each day for awhile and not in bed all day (just a 45 min nap.)
Lyndsey, so glad your insurance comp is paying. It validates that you are indeed very sick and now you get get better.
Corin, were you on zith with rocephin for a year? How long into treatment did you lose the gall bladder?
I think my doc is a one abx at a time kinda guy. I am considering adding another doc to the mix as I move forward.
Kathy, hang in there (I still need to find oil of oregano). How is your pain level today?
Anyone able to work? How about excersize? Tell me about your diets...who is being strict and who isn't?
I am being strict...no sugar very low carbs no white flour. I tried mangosteen (3 oz a day) but feel guilty about the natural sugar (cause it is so sweet and yummy.)
Glad we have each other! Blessings, Kim
-------------------- We are spiritual beings on a human journey...
posted
Today was Day 11 - I feel a bit better today. Yesterday was horrible with aches and pain and heartburn worse than I've ever had!
I'm not working (since May) which does give me time to rest. I haven't needed afternoon naps because I've been able to sleep in every morning. School starts next week so I'll probably start with naps again!
Exercise is a joke! For the past 11 months, it's been such a chore to even walk to the bathroom on some days! I gave up exercise altogether until I'm healthy again. Part of my diagnosis includes muscle wasting...supposedly overusing damaged muscles only makes them worse.
Dieting...well, I really should be dieting. I've put on over 15 pounds since this all started. And I needed to lose about 10 before that!
I was being very careful and avoiding sugars until someone pointed out that some of my issues could be related to the chemicals in sugar-free products. (This was before my diagnosis)
Now I feel that the only "fun" I can have is dessert!! I can't enjoy many activities that I love, but I can eat! As soon as I begin to feel better and can start exercising, I plan to throw myself into it with absolute joy! I'll never take walking for granted again!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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i think it's so funny how you all remember how many days you've been on IV therapy. I can't even remember sometimes if I've eaten.
Are any of you thirsty on IV rocephin? I am so parched ALL the time! My doc just decided to give in and give me bags of saline to help-but I am drinking about 7 liters a day!
I used to only drink bottled water but I don't even care anymore-as long as it has a little lemon I can't seem to get enough.
I have gained a lot of weight too (about 20 pounds) my doc says most people lose weight with lyme but not so much luck for me! I am walking for 15 minutes 4 days a week (and i try to go longer) but I do what I can do.
I am hoping I will be able to lose the weight but man it's HARD! I have never been this big in my life!
Do any of you work? I work 30-40 hours a week and man I am so tired by the end of the week but I have to work for insurance so in a way I guess I am blessed to be able to pay for all these BILLS! haha right??
Do any of you have troubles sleeping? I can't seem to sleep for more than 3 hours at a time. I am going to try siniquin for pain and sleep=we'll see how it works...
i hope u all are doing well!!!
Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I am not thirsty too much but I drink anyway. Have you been checked for diabetes? My dog has it and drinks an ocean a day.
I can't quite work yet but I consider going to the grocery store or taking care of house a days work and this I can do right now (wasn't always the case)
I am so tired to excersize but I walk around the block and stretch. I want to try yoga again.
Have lost 20 pounds (I am very nervous about what I eat, nothing but veggies and protien) once a had a peice of ice cream cake and was sick for a week.--major symptom flare and yeast right away.
I am also pretty nauseated.
Thanks for sharing your stories, I truely appreciate your company on this journey.
Blessings. Kim
-------------------- We are spiritual beings on a human journey...
Having a really good day. Dont't get me wrong it's not perfect, but I will take it.
The morning always starts off slow, but somehow the dark clould lifted.
A little achey, no hip pain which means I can walk fast.
Four weeks ago I could not walk at all without someones help.
I am trying not to be premature about my celebration because I know tomorrow I might crash and burn.
I could live the rest of my life if it stayed like this. Now I have the encouragment to want more for myself.
I thank God for this day, and I praise him.
It's really weird. The herxing causes such depression. Yesterday I felt so hopeless, and today I have hope.
I now know my herxing is severe hip pain. My hips even get swollen, very sore sore legs, and my feet hurt and feel hot to touch. Ankles also get very hot and swollen.
Last night the tremors started, I even had an episode where I forgot to do some of the most simple things. This brings my little nervous breakdown. That's the peak of my herx. This is the second time it's happened with a lot of head pressure.
I started a down swing this afternoon with major pain in bladder, abdomen, crotch, groin legs, lower back and other head stuff. I stayed in bed all afternoon.
Second, regarding the caller who checks on you (hopefully it's not me I'm sorry...I forget who I call minute to minute and what dumb things I might say )
If not, people try to run their agendas with our illness (whatever weird thing it may be about). Since you are such a kind heart - then there is no need to put bad charma out there, just say very politely
"I appreciate your interest in my condition, but right now it is very important for me to focus on positive things outside of my illness--let's talk about something fun."
If this doesn't work, I have put all high maintanance people on alert that I would be taking some time over the next few months for introspection and quiet healing...and that I will not be responding to calls or emails for awhile.
(This worked for everyone except my mother.) For her and other persistants, give them tasks like:
1. Compile recipies of low carb meals 2. Research different brands of picc line covers for bathing. 3. Put the gardens to bed for the fall. 4. Take a kid or two for dinner at your house or a movie once in awhile. 5. Take me grocery shopping so I don't have to carry stuff. Or better yet, take my grocery list of heavy items and I will reimburse. 6. Take out upliftig books on tape from the library for me so I can listen when my eyes hurt. 7. Say a prayer that I will be back to my enthousiastic self soon.
Keep up the great healing!! Kim
-------------------- We are spiritual beings on a human journey...
posted
Hey KATCOM , So glad to hear you had a good day yesterday !!! I've been reading your posts and hoping you would start having some relief soon !!! Call me if you need ANYTHING ! Your Pal ,BRL
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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