Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Hello, my fellow friends.
It's been quite awhile since I've posted. Anybody who's come since I've been away (about two years) can see, from my post history, that I was once an active member.
I've taken a very serious turn for the worst. To bring you up to speed: (Put your feet up!)
Sick since '85 (Lyme, coinfections, EBV and HHV-6) but misdiagnosed for almost two decades and treated, at one point, with long-term immunosuppresives for supposed Lupus. Took a dramatic descent. Still, compared to now, after more bites(!) and more virulent infection, I was the picture of health!
Treated with 56 days of IV doxy in '02. Many, serious drug allergies (not herxes) limited what I could receive. I was sent to the ER with severe asthma after only 14 mg. of Rocephin, for instance. I only got worse, and I tested positive again a few months later. Toyed with rife.
Saw a handful of LLMDs (though I would use the term loosely with some, but I won't get into that). Ended up taking orals for about 16 months (late '05 through '07), but I never got better. Only worse. And all I could even take, alternating, was doxy or Zithromax.
Began to suspect drug-resistant bacteria. Still unknown.
Decided to try rife and Buhner herbs (what I could afford--main protocol and a few others) for a few months. Got reinfected in April of '08. Did NOT want to believe it was tick-borne. Besides, it appeared to be from a brown recluse that was in the house, and I didn't they they could pass standard TBDs. That's when my true descent into the black pit of hell began.
I developed many MS symptoms. A neurologist said I have (his medical term) "junk in my brain", but not MS. Kept seeing neuros. Saw two ID docs (thinking about possible MRSA, etc.), a bunch of GI docs (began losing many nutrients and have persistent inflammation in my stomach and duodenum (form of Crohn's?), but no one knew why. No one knew why I had to cut skin from my fingers every day as it dies. Saw scores of other "ologists" just like I did back in the day. I developed excruciating, constant bone pain everywhere. Babs symptoms became intense. I got weaker, and I knew I was dying. (After spider bite, I got short-term Avelox, first alone for 10 days and then with clindamycin). I also went back on orals for Lyme (same two) for a few months and tested positive for Babs. Did some Zith/Mepron. Then insurance refused more tx. And despite my severe, increasing symptoms, the LLMD (I mostly saw PA) came in and yelled at me, saying, basically, that I'm nuts.
Well, I kept getting worse, but I still couldn't, wouldn't believe it was tick-borne. I got infected in both NJ and SC, and I never had the freakish strains I'm getting here in PA, I guess!) I've had no tx since January of '09.
Then it happened. I got bit again. Despite precautions, somehow, my husband must have brought a tick in, or I did a few weeks prior when I was out in an area I deemed safe. (Ha! I live in the woods!) I was out just over a week ago, trying to enjoy dinner celebrating my finally getting a poetry book out for hopeful publication. I felt something crawling on my upper back. I felt it, and I had to kind of pry it off. I then brushed it off. I thought, NO! It couldn't be a tick. Could it? But I realized it felt like one. It burned afterward, and I had an allergic reaction.
The next day, I was so stiff all over; I could barely walk. Babs symptoms are back in full force: the chills, sweats, severe gasping for air, pain). I suspect more Bart with the stiffness. I have more neuro problems, and I keep losing nutrients. I know I'm dying. There's so little left to me and such a freakish, resistant load of infections.
I can't see an LLMD as we are of very, very limited funds. I need one that takes Medicare, and Dr. E is too far (when my husband works 65 miles away, and I have no car, nor can I drive, anyway). Besides, the couple of ABX I could tolerate failed before. I have never, ever had a day of success. My gut is so wrecked. I got some Buhner herbs, but I can't stomach them. I'm struggling to get some artemisinin in. I may HAVE to depend on the rife (B3); it may be my last hope. We live in a very rural area of PA; everything is very far away.
I'm so tired, and while I'm not suicidal, I keep wanting to just relax into death. I hope you understand what I'm saying. (Sadly, I think some of you do.) It's so close. I know it beyond a shadow of a doubt. So I'm weaker, and I'm in utter despair.
I had already lost friends, but then I gained some through Facebook. Well, I'm losing them, too. Few seem to be able, or want, to hear from someone who's so sick and doesn't get better.
I was a vibrant person who, even with the initial infections, was able to work close to half time, maintain a more active social life, attend religious services each week. Now, taking a shower is a monumental task. My muscles are so weak, and I lose my breath. The pain is so bad. The narcotic I was able to get from my primary doesn't do much at all now (began taking it once per day and now can't just stop). I can't absorb nutrients, so my skin is a mess. My hair is falling out. I lost 1.5 inches in height. Iron is dropping now. I'm malnourished yet overweight.
Moving here was such a mistake, but if we go into foreclosure and try to get an expensive apartment in Jersey, well, the garden apts. have big bushes near the door. Would it be better? And at least it's quiet here. I figure, if I'm gonna die, I want to at least do it in peace. We hoped the home would increase in value in a couple of years, and we wanted to relocate to Phoenix, AZ area.
I've lost all but a fraction of hope.
I'm sorry if this seemed rambling. It's just been a terrible ride these two years I've been away, and I wanted to share as much as I could in as little space as possible.
Thanks for listening.
Oh, the woman who lived here before us? I learned that she was only 53 when she died. She was perfectly healthy, apparently, before she moved here. She and her husband lived here five years. She got MS, got very cold and "loopy" (based on neighbor reports), and died. And there was major risk inside as mice were running free.
My soul wouldn't do well right downtown in a city, but I do wish we could live in such an area at this juncture.
I miss you. Keep up the good fight!
Gentle hugs, Starry
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Dear Starry,
I'm newish here so I don't remember you from before, but I just want you to know that I am so, so very sorry for your pain and suffering. I will keep you in my prayers.
"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up." Psalms 71:20
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
Remember to Smile
Unregistered
posted
Dear Starry, I read what you wrote, and I love you.
When I get up the physical nerve to shower again, I will think of you and pray your pain will wash down the drain, your towel will be nearby, fluffy and warm, your arms will move effortlessly, and you can rest all clean into restorative sleep.
I pray that you will find relaxation with a very comfortable pillow today, and tomorrow, and the next day...
May sunlight stream into your home and moonlight dance in your trees. Dream about the next meteor shower...
YES, the spider bite of brown recluse is direct and indirectly responsible for [that poster's] chronic leg/foot pain, kidney problem, and possible others.
. . .
Other complications of brown recluse spider bites include kidney failure, hemolytic anemia (destruction of red blood cells), weakening of the muscles, as well as weakening of the immune system, thus putting you at risk . . . .
Going back to the chronic leg/foot pain with swelling. After the bite, the neurotoxin from the spider damage many of the nerves of your foot. However, appear repair, the nerves re-grew, but most of them grew abnormally into the wrong tracts and tissues and surrounding tissues, especially if graft was used for the repair.
This abnormal sprouting or re-growth of nerves is called aberrant regeneration.
In addition, this abnormal regrowth makes these nerves highly sensitive to any stimulation, even with the slightest movement.
Also, the generalized neurotoxic effect of the spider neurotoxin on the nerves throughout the body after a period, even when it appears that you have recovered, can still cause chronic low threshold for pain. . . . etc.
-- [Reply was from Dr. Stan] --
The answer went on to discuss the importance of glutathione in helping to reduce pain. Whey protein was suggested. But I have read that IV glutathione can be markedly more effective during severe times (with lyme, anyway).
Maybe, if you could find a doctor who understood some of the long time effects from a brown recluse bite - and if they agreed that glutathione IVs might help, your insurance might cover those (and that would also help with lyme, etc.)
There are also liver support measures to help increase glutathione but my guess is you are up to speed with all that.
Good luck. As rough as this is, it could still turn around. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Star...
So good to see you again! But...
You ARE in a pickle, aren't you? So sorry to hear that.
Actually you are not JUST in a pickle.. it appears you are flat on the bottom of an entire pickle barrel .... sucking up no oxygen at all, only salty vinegar brine. UGGGGG!!!!
My crystal ball just blew a gasket due to all the different directions your post is going and my limited brain.... so I will have to "wing it".
It appears you have ONE main problem you need to focus on right now.
You need to be able to go to a doc that takes medicare, that is close by and that knows Lyme... and that knows of your sensitivities.
I know you... and the rest of your problems are basically slymie fluff that wouldn't bother you so much if you were feeling better.... right? If so, let's focus on the main problem... ok?
I've been checking out some possibilities and so far nothing has jumped up. BUT.. if you want to email me... I will check around some more. Need a few more facts from you before I search further.. so here you go.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm so sorry star,
i have similar history and assume eventually i will join ou
i don't know what to say that would be helpful
i am maintaining now on buhner herbs by buying the cut and dried herbs and making tea. itis much cheaper, and not too hard physically to do it---but a little hard mentally if you are foggy until you get organized
my llmd---a bright newcomer working with the old llmd who thinks microbes cause a lot of diseases... believes the Bb and other bugs get resistant to abx but aare less apt to get resistant to the hebs. (i coldn't do the pills---i can only do the tea)
if you want to tr the tea i will help you. let me know. i'll pm ou my phone andlocation.
i am so sorry you are going thru this. i will help if i can.
lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam so sorry
Treat as best as you can hang in there. I pray it all comes out well for you. God Bless you
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
First, I truly love all of you. After posting yesterday, I felt like I was back home. I felt the support of all around me, buoying (sp?) me. And you have my love, prayers, and support, too. I'll be able to answer more of others' questions, which I've always loved to do, in a few days, I hope. I hate being this acutely weak right now.
Quick practical question: I didn't know you had responded until today. I used to get posts in my email. Was I supposed to enable something when I posted? I can't remember.
Tincup: I have never forgotten you! You're the tincuppiest! And thank you for making me laugh today. I'll email you soon. I am in a dead zone as far as LLMDs go. It's pickle-y, but I must prevail! The new bite has me feeling so incredibly awful. One good thing about being almost bald: It's easy to get that dill week out!
Keebler: Verrrry interesting. Thank you for this! Unfortunately, since I was concerned about resistant bacteria from the spider bite (and not one doc has swabbed my nose for MRSA. How hard can that be?!), I told a lot of different docs about the bite, aftereffects, and continuing issues. They seem just as clueless about that as about Lyme! I found the spider, too, though I never brought it in. I never could have caught it. They are fast hunting spiders! I just scared it, I guess. Now I don't walk around in bare feet in the dark, and I check better when I walk around. We've had three in the house since we moved here in '03. Haven't seen another since '08. I hope that they moved out, if we did have an infestation. You can have one and never know as they do prefer to stay away from people; hence, the name "recluse"! Good thing I'm fast with a vacuum. Hoovered those suckers right up!
Lp: I got your PM. Thank you. I hope to chat soon. Tea? Hmmm. That might be easier for my inflamed tummy to digest. And cheaper is necessary here! I'll have to find out from you a good source of the dried herbs. Maybe Buhner has sources in his book. I'll have to look. I'd prefer to hear from someone with personal experience, though! I'd love to find out who your LLMD is, too, if within a certain radius of where I am.
I remember you, Treepatrol. I hope you're doing well, or well-er!
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Star Sorry you are having a hard time of it again.
I am still fighting lyme after all these years.
I have been doing better on a antibiotic called CEDAX.Hawever I lost my medicaid now and my Medicare doesen't start for a year,I cant buy anymore CEDAX.500 bucks for 30.
I hope you start feeling better real soon!!!!
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
| IP: Logged |
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Maddog: I'm so sorry you're still fighting this illness. It can be downright discouraging when it persists despite great efforts.
I wish there were some way you could get that antibiotic before Medicare begins. I don't know what company manufactures it; I wonder if you could get it free, or at a reduced rate, directly from the company? I'm grasping at straws. I sure hope you feel better soon, too. Big, gentle hug, my friend. (((Maddog)))
OptiMisTic: I got a chuckle outta your last statement. Yes, all creatures deserve better health.
I'm glad you were able to get the abx in this way. I took doxy for a long time and didn't find it helpful. But now it seems it may not have been absorbed, anyway, due to a liver situation. Hoping to find out about this soon.
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Correction: All creatures deserve better health except TICKS!
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Actuallly, even ticks deserve better health. That would be ideal. TIcks did not ask for this. They got it from somewhere else, too.
Tick are just the carriers. If we could get ticks healthier, there'd be less transmission. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Embarrassed]](redface.gif)
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
I'll be able to answer more of others' questions, which I've always loved to do, in a few days, I hope. I hate being this acutely weak right now.![[kiss]](graemlins/kissing.gif)
And thank you for making me laugh today. I'll email you soon. I am in a dead zone as far as LLMDs go. It's pickle-y, but I must prevail! The new bite has me feeling so incredibly awful. One good thing about being almost bald: It's easy to get that dill week out! ![[Smile]](smile.gif)
Printer-friendly view of this topic