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Post by kiki on May 1, 2007 22:24:17 GMT -5
I want to give 50.00. Do you want me to send it to to you Friski?
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Post by kiki on Apr 26, 2007 22:18:33 GMT -5
I agree Prevenge. Having something set up with PayPal would save so much time. My thought is for this particular situation we use whatever is quickest but not put off setting up PayPal so its ready for the next need. PayPal would be easier than sending from your bank cause they require a routing number of the account its going into. I dont have an iota of unease in sending the money to anyone involved with this. After all...if they did the wrong thing it would be on their conscience!!! ;D
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Post by kiki on Apr 26, 2007 15:21:52 GMT -5
The fastest way for me to send money is wiring it from my bank. Last night I was thinking it would be nice if there was a "down but fighting" fund but hadnt thought it through, then read the PayPal donation page idea that Prevenge has and would be happy to contribute to it but dont know how to set something like that up and dont think I could concentrate enough to figure it out at the moment.
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Post by kiki on Apr 25, 2007 21:20:39 GMT -5
I will contribute some money. To be honest I feel Im the one getting some help cause its been a long time since Ive felt truly useful and even though my heart aches at the inhumanity of the situation, I will sleep with a lighter heart by being reminded that my belief in the goodness of people is alive and strong. Hope that doesnt sound selfish. Im too tired to get arrangements made tonight but will check tomorrow.
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Post by kiki on Apr 10, 2007 20:56:34 GMT -5
I know Alex gathered info to look for commonalities but maybe it coulb be updated. After your responses it seems like there has to be a relation.
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Post by kiki on Apr 7, 2007 15:40:06 GMT -5
From what I know about the virus, its in me for life and lays dorment unless triggered by something. I cant help thinking that something has infected it-kind of kidnapped it!! I never took it but know theres a med to help keep it surpressed. I wonder if anything would happen if I tried it?
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Post by kiki on Apr 7, 2007 15:26:46 GMT -5
I don,t know if I'm the only one to do this but I latch on to any change in my body as a potentional clue. I'm at that lovelyage of 50 and have to remind myself that some changes are just plain aging but some of them are too strange to write off. I have gotten fever blisters(some call them cold sores) all my life. I usually got them when I had bad colds, the flu, sometimes from too much sun, and occasionally from prolonged stress. I would get one on my lips that lasted 4-10 days. What I find weird is I have not had one since I became noticeably and undeniably really sick with this(known as the "brazen as* uglies" in this house!)-I can,t make sense out of the fact that for over 2 yrs while being the sickest of my life I have not had one. That in itself kept me wondering but yesterday I got a tiny one and was convincing myself that it was a good sign that things were getting back to normal(I think I'm herxing from meds I'm on but not sure) but within 3 hrs it was gone. Vanished without so much as a trace. Nope-can't write it off. It's too uncharacteristic of how mine always were. It IS a virus(there are multiple types-mine was the simplex-1 I think(didnt have the genital one) so its not too far-fetched to suspect somethings up-don't you think?
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Post by kiki on Apr 2, 2007 16:13:15 GMT -5
My Dr. said one of my tests showed a "high titer" for babesia--I also tested positive for lichen schlerosis, vit D deficiency, and a tilt table test diagnosed POTS(postural orthostatic tachycardia). My question is about the babesia. An ID Dr at Johns Hopkins said that only means that I did have it at one time but dont anymore and to put it out of my mind. My primary Dr said bull! and put me on Clindamycin, quinine sulfate and 2 doses of ivermectin. Oh, stromectrol too. I was on them for 3 months. I didnt feel any different taking them-no side effects at all but about a month after last dose symptoms lessened but never disappeared. this was last year. I have monthly Dr appts and she orders new tests each time. she freely admits that many are probably far-fetched or to simply rule out things-mostly to keep insurance co busy scratching their head so they dont try to interfere and say that what shes doing isnt warranted! Last mo one of the tests showed another high titer for histoplasma-it was only one # below positive cutoff-hope that makes sense. She has me on doxycyline(sp?), ketonazole, and gave me another script for clindamycin to use when any dental work is done. She said she wants me to take the clindamycin for the rest of my life during dental work. She also had me take 2 ivermectin doses for 2 wks and refills to use as I see fit. When she puts me on multiple meds that I never took before she has me start one of them right away and wait a few days before adding another so if I have trouble w/them I'll know which one. I started the keto first and felt human in just a couple days(my pharmacist said he was doubtful that it was indeed the anti-fungal working that fast as he felt it would need to build up in my system(a couple mo) before having that kind of results but never say never). I took the ivermectin for 2 wks(4 doses), took 20 doses of the clindamycin for 7 or 10 days as perscribed for tooth transplant prep work and havebeen on the doxy and keto for about 2 months. No problems till a wk ago when all !@!! broke loose. Im having projectile vomiting and dry heaves when theres nothing left to throw up. My scalp and eyes are in a constant uproar and the tiny black specks and baby fine "wanna be" hairs have gone insane. Could this be a good sign(herx?) or am I setting myself up for a major disappointment? Also she said I may want(need) to take the keto for 2 yrs-and maybe for ever w/breaks as/if needed. She wants me on the doxy for 3-4 months and decide at that time if I feel I need to be on it longer. I trust her implicitly but would value opinions of those that have first hand experience. She also gave me a script w/refills for erythomycin oph ointment but asked me to check w/pharmacist before using as it may be bad to take w/the other meds and some abx are not to be used if fugus is involved. Can anyone share some words of wisdom? To top things off, she thinks I gave myself a hernia from the severe retching! I can endure the misery easily if I know its helping me in the longrun. I didnt intend to write a novel--thanks for hearing me out and for any opinions you care to share w/me. BTW, my Dr is an internist not ID but shes everything and then some of what a Dr could hope to be. She believes that prescription meds AND alternative medicine is valuable. she is in MD if anyone is close and needs a good Dr. I'll warn you though-for the first yr. my appts were 2-3 hrs(monthly) however she is driven by her refusal to fail and Im quite sure she would adapt her treatment as much as she could if distance were an issue. The bad thing is I think she will only take patients w/insurance(but Im not positive about that). Thanks again for taking the time to read all this.
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Post by kiki on Apr 2, 2007 12:21:19 GMT -5
Liz I read your "our story post yesterday but was having one of my "despair" moments and was not fit to respond. I have moments of a despair so intense it truly takes my breath. Im usually able to fight it but at times Im frozen with sadness and suffocating fear. Its a comfort to have someone understand the horrificness of some of the symptoms but mostly when I read the nightmares some are living(correction-not living but existing)with my heart feels like it will never be the same-as Im sure it wont be. reading that you found some peace today made me smile for you. Hope your day is filled with life!
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Post by kiki on Apr 2, 2007 3:01:51 GMT -5
Orion-thanks for responding. I probably misunderstood what she said but it sounded as if her test was positive for the bacteria which made me wonder what compelled the Dr. to look for it and if however unlikely, there was an "exploritory" type of blood test. I think her post was called "my story"-or something like that. My faith with the medical field has also been "fubar"ed with the exception of my Dr. who is vocally beyond contempt for many of her "peers". If words could maim, the ID Drs. at Johns Hopkins would be crippled!
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Post by kiki on Apr 2, 2007 1:57:26 GMT -5
Hi all. I'm curious about a post from Liz and her blood test results. The positive for a rare bacteria made me wonder if there was a lab that would analyze complete make up of blood. I thought a lab would only test for specific requests but her results made me think I'm wrong since the rare bacteria wouldnt be an obvious request. My Dr.(one of the few that honors her oath) has had me tested for all the more common culprits and continues with the lesser suspects but if there is a lab that will analyze total content, I'd love to have it done. I live in PA but will travel ANYWHERE. If anyone can tell me if such a lab exists, I would really appreciate it.
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Post by kiki on Apr 2, 2007 12:32:41 GMT -5
The name of the ointment is Muro by Bausch&Lomb and comes in 3% and 5%--ointment and drops. I cant believe I forgot this but when Toni mentioned the Gentamycin, it came to me like a steamroller-I used it and had what eye Dr said looked like chemical burns on my corneas. he gave me steroid drops and I was in the emergency room that night with a torn cornea-I cant find a word to describe the pain-and my husband said he could "smell" my terror. Dr then gave me erythomycin oph ointment and my corneas healed in 3 days but didnt slow the "uglies" one beat. Actually I think my pharmacist said abx should NOT be used if fungus is involved(I may be mistaken). BUT my experience w/the gentamycin may not be yours-I think the reason products affect us differently is due to any coinfections we may have. OCuSoft make eyelid cleansing pads that help but once in a while my vision is blurred after use and it feels like my eyes are crawling w/the uglies. Awful. Just awful. Lavender baby shampoo is a help but short lived.
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Post by kiki on Apr 2, 2007 2:39:23 GMT -5
Oh wow-watching your video was difficult. My eyes feel like they do the exact same thing if that makes sense. It also seems like anything I apply to my scalp ends up in my eyes. At first I thought it had to be just running into my eyes but at this point I have a hard time convincing myself of that. My eye Dr. can only see very fine hairs which he sees in alot of his patients although he did remark that I had more than he had seen before. My primary care Dr. is having me use 5% saline ointment. I forget the name but it starts with an M and does not require script. If you want me to check name of it, let me know. Bless us all
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Post by kiki on Apr 4, 2007 21:29:02 GMT -5
Sorry-meant vit D deficient
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Post by kiki on Apr 4, 2007 21:27:13 GMT -5
I dont know if this is the right place to ask but I tested positive for vitamin D(among other things). I dont know the number but am taking Calcitriol(script). Should I not be taking it? My mind is reeling and I cant concentrate enough to make sense out of much tonight. Thanks.
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Post by kiki on Aug 7, 2006 17:51:42 GMT -5
I've been a frequent reader for about a year but really had nothing beneficial to offer, and frankly was keeping myself in a cozy state of denial. I suppose by not seeing my own words I was able to remain an observer. Is'nt it an amazing gift that our brain can shield us when our struggles to accept the unacceptable threaten our ability to function, by allowing one to "go into hiding" so we can grasp our reality at a pace we can manage? I am blessed to have a Dr. that has NEVER doubted me. Never. She comes from a long line of dedicated, talented and widely respected physicians/surgeons. She does them proud and I thank God for her. For the past year she has run all the logical, numerous illogical, and a sprinkle of totally "out of the box" tests. One came back showing a high titer for babesia. She had me on clindimiacin(sp?) and quinine sulfate for 2 months for that-even fought my insurance co. (and won ) when they didn't want to pay. She also perscribed 2 doses of Ivermectin. There have been other "exploritory treatments" as we privately call it. She reads anything I give her and while she rules some out immediately, she explains WHY. She sees me monthly and my appts have never been shorter than 2 1/2 hrs. She reminds me of a cartoon bull- red with frustration- such is her determination to "fix" me. She's tried to send some samples of something she found on my skin but once she saw it hop off the tweezers and another sample "escaped" en route to lab. After a local derm failed to be as impressed as she saw fit, she sent me to Johns Hopkins but made it known she was not convinced that was the best place for me but would start there as its only 1 1/2 hrs. from where I live. My appt at J.H. was last wk. I saw the chief of I.D. and an intern working "under his wing". They both examined me (separately) and the intern asked if I had certain symptoms(I do). After privately comparing notes, they came back and said there WERE conditions that would cause my symptoms and are running tests. One thing mentioned was a "rather novel" hair follicle infection that can cause untold problems including joint issues. I hope my next statement doesn't rile anyone, but I hesitated to bring my appt up here as I am aware of the distrust(not saying it's not justified) for the medical community. I only know that I have to be positive. If I'm asking a dr to be open- minded with me, tis only fair to return same. BTW, I have only had 1 sore-put a potion I made per dr. and after peeling myself from the ceiling, let it exposed to air till bedtime when I put neosporin+pain relief cream and a band-aid on it followed by a lintless cotton footie for good measure. In the morning I put more of the potion over it(with no pain to really speak of) and kept it uncovered from that point. It got an enormous and heinous looking scab that morning and I FORCED myself not to so much as breath on it. I did not even dab a washcloth on it -gave my dr. my word not to touch it--no excuses, no exceptions, period(even wore jammies and cotton mittens fashioned from an old pillowcase that my darling husband found much too amusing! I certainly had no intention to write a novella but please consider this my wish to remain on board. If anyone is curious about the exact "lotions and potions and meds I've used, I'll be happy to share. I can truly say that I noticed some degree of improvement after every single course of treatment. Caution-some were brutal before eliminating or relieving symptoms. Thanks for taking the time to read about my version of our nightmare. Hold on to hope- nobody can take it if you refuse to let it go. If yours has been misplaced, damaged or abused I'll share mine till it returns-I'll PM or call anyone, anywhere that asks. Sain demain!
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