Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Can I say I absolutely hate mold, Lyme, Bartonella, and whatever else is tormenting me??? ARRRRRRRRRRGGGGGGGGGGGGHHHHHHHHHHHH!!!!!!!!!!!
Trying to do what I can, but I just cannot sleep, eat, breathe or anything else...
And no $$ to do anything either...
Too much going on...
Feeding tube site needs stuff done...but no GI doc support for this...
PICC probably needs to be replaced...it's getting worn out...
I'm pretty sure I've got some kind of vag. infection...but no $ to get it cultured to find out what...
Abx make me sicker...
Can't breathe (sinus congestion) & a veritable waterfall of post nasal slime...
Stomach REFUSES to function...
Head won't stop spinning...I'm spinning 24/7...
Can't fall asleep because I can't relax...
But I'm so exhausted, I can't do anything else...
And now my RSD is trying to relapse because of lack of exercise...
And we keep discovering mold in the house...clean it up only to find more...
I'm SO $#%& SICK AND TIRED OF THIS CRAP!
When will it end???? I can't take this anymore!!!
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, Razzle, I'm so sorry to hear how bad things are right now. I think we all can understand. I sure do.
There must be some clinic you can go to to at look at your vaginal infection, the PICC, the feeding tube, an ENT---one at a time. No, the won't be LL, but they could help a lot, and keep you from getting sepsis!
I gather that you don't have Medicare, but what about Medicaid? Or applying for Medicare (that is a much more long-term thing, I know).
Hospitals often have free or low-cost clinics, especially teaching hospitals.
Please look into these possibilities, even though they won't be LL, and even though you are likely very sensitive to meds. There surely are ways that they could help anyway.
The mold thing is awful. I totally understand. We have a bad mold situation that needs to be handled, and it is huge---and made worse, because we rent, and the landlord will only remediate if we sue and are successful in having that enforced, which is difficult.
Vent all you want! I do! I do it in a therapy situation, even if not with a therapist (on my own, or with friends who are doing the same or sitting with me while I have my feelings . You can cry,
yell, etc. into a pillow at home---or when no one else is home. I do! It lets off the steam and helps me to then feel where to go next.
Maybe you need to sell your house and move?? I know, another huge endeavor. How about a fairy godmother? Quite a few of us could use one!
PS If you are herxing, you probably need to detox more. That's huge; I have to do lots of it to keep up.
Posts: 3771 | From around | Registered: Mar 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I wish we qualified for assistance, but everything I've looked into either won't help us (we don't pay utilities), or we don't qualify. No kids either, so no help. Have to earn less than some ridiculously low amount of money to get anything, and Hubby's income disqualifies us...
I have a good, Lyme-Literate regular doc, but I don't want any male poking me "down there" if you know what I mean...and the low cost clinics require me switching to them as Primary Care to get seen there, which I don't want to do because I really like my regular doc (he's the one who dx me w/ Lyme & is pretty good with treating it, my body isn't cooperating though).
We have private insurance (not through work), so we don't qualify for a lot of stuff...but the deductible and coinsurance is more than we can afford (thank you Obamacare for messing this up).
We rent (home ownership is a pipe dream we'll probably never have in reality), and our landlord is being really super nice to us right now (God bless him), so it wouldn't save us money to move. Just have to keep up with the darn mold...
Would love a fairy godmother...LOL!
My regular doc is adding a Social Worker in his clinic, so I'm going to go talk with her once she's in-network with my insurance...she may have ideas for help and stuff.
I went to one ENT and he blew me off and misdiagnosed my vertigo as benign paroxysmal positional vertigo, which it is not. My symptoms don't match, and I don't have nystagmus...my spinning is too slow & is constant (24/7), not intermittent. Meds for vertigo make it worse...
I need a secretary to keep track of all the stuff I need to do, and help me make phone calls, and stuff...my Mom tries to help, but she's not great with this sort of stuff either.
Yeah, I know I need to detox more. I run a detox program on the Ray Tube machine, and that has helped my liver enzymes lower... And I do get a bit of IV hydration every day (in addition to the TPN). But yes, you're right, I do need to do more.
This unrelenting nausea is difficult to deal with. Had to switch to oral medication because the IV med got changed to a different manufacturer, and that one makes the vertigo worse and does not help as much with the nausea.
This Gastroparesis flare up has really been rough...usually by this long after the main gut crash (crash hit in April last yr), I can reduce the nausea meds because the nausea settles down...but it isn't doing that this time.
And it is so hard to do much of anything when I feel so nauseated...so fatiguing...
The vertigo keeps me from going to the acupuncturist who was helping the nausea...
I so wish I'd never done that one dose of Doxy that kicked off the vertigo last summer...
I think my Adrenals have crapped out on me, too...so I've talked my doc into a low dose of hydrocortisone, but I haven't been on it long enough to really see any difference...have to tippy-toe into things, since I have to use sublingual stuff (can't swallow anything). So it is slow-going to get up to the full prescribed dose...
I'm rambling...should go take another nap...thanks for the support...
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Oh yeah, should mention the sinus thing is a long-standing issue, probably related to the Lyme/coinfections and/or fungal issues combined with allergies (dust, pollen, pet dander, etc.). I've tried probably just about every medication out there for it and nothing makes it stop.
Eating a mix of Fenugreek & Thyme helps the most, but I can't do that right now because of my darn stomach. I'm using Thieves oil topically on my sinuses, but that only does so much...mostly helps some with the congestion, but doesn't stop the slime waterfall...
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Razz, you are razzled aren't you. You know that getting worked up and stressed over some things that can not be changed at this time....
is making you feel worse. Remember stress is enemy #1. I have been under tremdous stress for the last 2 weeks and last Thurs evening for the first time in 15 years I went to the ER.
I don't go to ERs for a reason. I don't want to deal with stupid doctors that know next to nothing about lyme. But this was my heart and I have heart disease, so I went.
The doctor when we got to the discussion on my history of chronic lyme disease, didn't get into it. The look on my face warned him, do not cross the line with her on this. He asked me my issues and I started at the top of my head and moved down, he shut up about lyme.
Anyway my gyn is male. He's been with me for 30 years. Funny thing was last night when my husband and myself went out for our Valentine's dinner.
I seen my GYN across the room at the door waiting for a table. I think he would recognize me?
It really is no big deal to have a man vs a woman. I find the stir-ups the most humiliating thing a woman must do. I don't care if it was another woman.
Can't you try using some OTC meds for vag infections? I now use tea tree essential oil whenever I feel one coming on. When searching Swanson on line site where I order all my supps, vits and herbs, I found a vaginal suppository that has tea tree in it as ingredient that rids the infection.
So I have tea tree oil at home, why spend money for suppositories. It works like a charm in 2-3 days. Can't use it for long periods of time according to warning I seen on Swanson.
But it sure does help my pH and whatever pest is driving me crazy every so often in my vag.
Make that list of things to do for your health. Work on easier things first. Slowly, slowly work on one thing at a time. Be patient and accept some days you can do nothing that needs to be done on that list.
As typical with us suffering from this illness. The hills, because there are so many things to climb over, look and feel like mountains. It's exhausting.
Take care of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Razzle,
Boil 1 cup filtered water. Let cool to lukewarm.
Add 2 teaspoons xylitol crystals. (pure xylitol). Mix to dissolve all crystals.
Use in your neti pot as a nasal flush.
I did this nasal wash 4-6 times a day to get the bad congestion out.
It's the poor persons version of the amp B mold/fungal nasal. My LL told me about this.
Just xylitol and filtered water. No salt in this.
Try it for a week. It will help. Amazing.
It works for nasal fungus-just be sure to do it 4 times per day for the first week. Now I do it 2-3 times a day. A bag of birch xylitol costs about $15 and lasts a month or more.
Wish I could help you more Razzle,
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
If u cant get ti gyn about vag infection maybe a friend could just pick up the over the counter stuff...unless you have the tea tree and all u need to do that
The otc stuff works fast and everything will be easier if you can stop that
So tea tree wont burn...like oregano oil? I use it for cleaning...but didnt ever think of it for this
I bet the xlitol netti pot will work well...i have a spray for my nose that works well...that has xlitol in it
Mold is very hard to deal with. I hope you can at least fixone room that is mold free-then get a good aircleaner and run a diffuser with thieves oil and spend most of your time there the mold is probably giving you sinus problems...but it can be doing more damage too
Taking questran might help-but i know that isnt ez around meds
Someone said start with what is easy. That is smart. Hope you feel better soon
I
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Previously I recommended Represh for bv or vaginal ph issues... I no longer recommend it.
I got the worst yeast infection of my life from my 2nd package of that stuff.
So sorry you are dealing with so much at once. I know when it rains it pours... but you WILL get through this.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes, lp tea tree oil will burn for a couple minutes after inserting into vag but then it's aaaaaaaahhhhhh. Relief. I use it on the outer areas too that itch.
Now remember I'm a tea tree user. I've used it for 4-5 yrs for every skin wound, every tick or bug bite, in my mouth.
I have passed the reaction test to it, undiluted.
When I had that horrible UTI that went on over a year, my urine was so toxic that it would burn my outer areas. I would do many drops in my palm and rub it on the entire area for relief and for fighting the bad guys, whoever they were.
Survival without trips to doctors over and over and even worse survival from going to ER in a crisis. I tend to take care of my issues that arise at home. I even remedied a compacted bowel with my own home care.
I do my research first. Then I attack back.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
In general i think those of us who have been here awhile do better without docs
Docs make me worse more than they make me better
And it sounds like razzle doesnt want to go out
I dont think that refresh is for yeast infection...there are anti fungal things at the drug store worth a try
Once they didnt work for me and doc did a swab and found out it was bacterial...she said that was rare...she gave me abx stuff and what came out the next day looked like coffre grounds...i bet it was parasite eggs
Hope you can do a few ez things razzle
Oh-i forgot. I wanted to remind you that mold cant grow if humidity is low...below 40-50% so if you can get a dehumidifer itwill help. I got one at sears and then a good buy on one at job lot
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks for all the replies.
I was certainly herxing and overwhelmed because of that...I'd run a Lyme program on a rife machine a day or two before I started this thread, and wowzers!!! Herxed hard physically and emotionally for about 4 days...but I feel fantastic today (better than I've felt in a long time)!
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
That's great news Razzle! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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