|
Post by kiki on Aug 14, 2008 19:11:39 GMT -5
If she also has vertigo, is dizzy and/or light-headed a tilt-table test would show if she has POTS (postural orthostatic tachycardia syndrome). This test saved my sanity cause it was the first test to "prove" something was very wrong with me. And results are immediate. Healthy blessings
|
|
|
Post by kiki on Aug 14, 2008 18:46:41 GMT -5
A board without Toni is a board without sunshine. Healing prayers to you.
|
|
|
Post by kiki on Aug 14, 2008 13:21:57 GMT -5
My listing says "Hitting Rock Bottom", Addiction is discussed. hmmm-- Will morgellon symptoms be compared to drug use and/or withdrawal symptoms?? Hope I'm wrong but am too cynical to think otherwise.
|
|
|
Post by kiki on Aug 12, 2008 14:24:55 GMT -5
I have granulomas in my lungs.
|
|
|
Post by kiki on Aug 12, 2008 14:18:42 GMT -5
Hi all. I decided to change name from vivi to my nickname kiki. My given name has made me ask my parents many times WHAT WERE YOU THINKING??? They actually named me Christopher Robin. Nowadays it wouldnt get a blink but to a girl born in 1956 (in a small town no less) it was traumatic! So kiki it is. I'm sad to say the !@#!! is with me still. Dang. Here's the thing tho--I was symptom free till a specific moment. I was halfway down stairs to laundryroom (basement) and felt that "spiderweb on steroids" cover me. (felt like it "rushed" at me but it could have been me just walking into it. I dont know. Well to our horror a pipe gave out cause it wasnt angled right so the sewage was "collecting" there. Thankfully clean up was easier not to mention cheaper cause we already lost everything in mold clean up. Was the cobweb from the sewage? But there's more- our neighborhood got notices that a main pipe was being replaced due to leak and water would be off for so many hrs and not to drink it,etc till further notice. It said e coli and fecal-something (have to find notice-cant remember) had been detected but unless we drank water after the notice we couldnt be affected by it. But next sentence said if nauseous,diarrhea,etc go to ER. Huh?? Is it all just coincidence? Did I get reinfected? If so, by my own sewage? Is the water dept right that it couldnt have affected us? I have a hard time buying that but could be wrong. On a happier note I got Judy's light kit and my skin started clearing up pronto-yay! but herx are BAD-(cant really boo about that tho). BTW, I tried and tried to post since last one but couldnt. I finally sent admin pm to see if I was banned. I'm so glad to be able to post again.
|
|
|
Post by kiki on Aug 11, 2008 17:52:51 GMT -5
My husband once told my Dr that "morgies" were like corks bobbing in the ocean. He then said that we are extraordinarily strong. Both physically AND Mentally. When the fear chokes you, close your eyes, take slow deep breathes and know that right now this very second, someone is having the same experience and let yourself believe that each day brings more awareness which gives people a name for their torment and more importantly find support. Dont underestimate the voices of many. Believe me I was incredulous that this hasnt been a national alert or whatever BUT take comfort in the fact that ALL of the progress we have made is ONLY because people banded together. You are one of those people. My mom says God knows our shoulders are just a bit broader than most and we can think of it as a burden or we can trust that there is a purpose for this. ps ice cream helps too!
|
|
|
Post by kiki on Jun 21, 2008 18:44:50 GMT -5
I could'nt post here after my last time. When I tried I just got literally bombarded with ads that would'nt close. The window said: To cancel press okay///To continue press okay!!! It would not let me close it. I had to turn computer off without being able to save anything. Im still doing well and if this gets through I'll post the info some of you asked for. I don't know all lab results yet b/c Drs daughter had to have emergency surgery(horse riding accident) and of course she(Dr) was in no way able to think straight. But even though receptionist is NOT allowed to give out results, she threw me a bone and said when one of my tests came back she heard office nurse tell Dr "lung worms" and something that started with a v and ended with migans??? I dont even know how to look it up. Also interesting and very good is my histo titers are 2 lower that before. Hope this posts. I have too much to say and no place to say it ;D Love to all-
|
|
|
Post by kiki on Jun 3, 2008 6:16:23 GMT -5
I tested positive for babesia 2x at different labs. I was tested a 3rd time by the neurotox and he thought my test was mixed up with someone else b/c he said I should have antigens(I think thats the word) from the babesia. He tested me again and that time they were there. He retested me yet again and poof-gone again. He's more close-mouthed than my other 2 Drs but he must have seen my fear and said "dont let this upset you, theres much to learn about tick born disease and how they may mutate, co-infect, etc and Im not a wait-and-see kind of guy so you keep your chin up. Isnt this weird?
|
|
|
Post by kiki on Jun 3, 2008 5:42:42 GMT -5
I have never told anyone this except my Dr. Its a perfect setup for jokes and till now I didnt have the patience to find humor in it. This would be a great Frisky story! Even though I was exposed to the toxic mold and bird, bat and mice droppings, I got this in a field. Theres a small (reallly small) family dairy farm near my house and they plant sweetcorn on a small field about an acre from my backyard. One wkend we had a 2 day pool party and 4 couples stayed over. Beer=bathroom and we were in and out of house constantly. The next night I couldnt find my cat D'Artagnan. He was a housecat and snuck out every now and then. He was named after a Musketeer but was just a 23 lb wuss and always came crying to get in before dark-to eat no doubt! After calling and calling for him, I gave up and went to bed but it worried at me and I couldnt sleep so I went down to check porches. I thought I heard meowing and went out and followed meows to cornfield. I heard corn rustling but he thought it would be fun to mess with me and wouldnt budge. I crouched down to see between corn but didnt see him. So now here I am in just a tshirt and undies laying on my stomach in a cornfield in the middle of the night looking for my pussycat. All of a sudden out of nowhere came the thought "nothing will ever be the same". I tried to laugh it off but it was so intense I could not take a full breath let alone laugh it away. That was June 28 and 3 wks later I opened my linen closet and thought real fine sand dropped on me but saw nothing. That night I was deathly sick- violent vomiting, drenching sweats, diarrhea and a headache worse than any migraine Ive had. I vomited every single day for 10 mos and lost waaay too much weight and all I wanted was sugar. Then I got "peach fuzz" hair all over. Im natural blonde so it wasnt that noticeable but I knew. I knew something was very very wrong. I complained that my skin "absorbed things" -- a piece of thread, a sliver of cellophane,etc. Then I went on and on that my scalp hurt. My hubby looked and disgustedly said its just a tiny red bump.The moving hair was next and that gave my Dr pause-- rightfully so, she questioned my sanity. It speaks volumes that she NEVER stopped running test after test-(and she STILL is). She said the fuzz hair was lanuga but one appt she was looking at my feet cause I got a nail fungus. Her next words scared the bejeebies out of me. She was poking and prodding my toes and said "this cant be". Told ya she thinks out loud! I had hair growing where there are NO hair follicles. The monster was underway.
|
|
|
Post by kiki on Jun 3, 2008 0:38:34 GMT -5
Oops. I wasnt clear- smoking can DETER granulomas. My Dr wondered if the NONsmokers got lesions and if smoking actually prevented lesions. She said she cant make herself say ANYTHING positive about smoking though! One thing I love about her is she doesnt insult patients by nagging or scare tactics. She says something once and trusts that an adult "gets it". She thinks out loud alot so this ? may lead to nothing. But ya just never know.
|
|
|
Post by kiki on Jun 2, 2008 23:04:30 GMT -5
My Dr was curious if people with no lesions were smokers. I am and apparently smoke can affect granulomas. I had nightmare symptoms-moving hair, biting, crawling, etc. Oh and the unimaginable terror--INSECTS! Till my dying day, I will be amazed that I didnt have a total mental breakdown. My mom says sometimes we're better off not knowing whats ahead. I dont know if I will ever feel "safe" again.
|
|
|
Sorry!!
Jun 2, 2008 21:58:26 GMT -5
Post by kiki on Jun 2, 2008 21:58:26 GMT -5
Oh my gosh, right arfter my last post my laptop got crazy. I couldnt send any posts and every 2 min the screen filled with gibberish. When I tried to turn it off my screen went blue and wouldnt even let me turn it off. My hubby was on his annual golf trip so I couldnt use his and the desktop had to be tossed cause of the mold. I took it to be fixed but just now got it back. I lost everything on it. I cant tell you how much it worried at me that I couldnt follow-up with you guys. Im so sorry. GOOD NEWS is... still symptom free. Also, for the first time in 4 yrs I had a cold! But my best news is the results of some tests I had done mos ago. A MRI or CT scan(dont remember which- have had both) showed granulomas in my lungs. My hero Dr asked if Id be willing to let lab try to extract one. She knew full well I would have endured a heck of alot more than that if there was even a remote possibility for answers. So down my throat went the tube. And wow was it worth it. The granulomas had larvae in them!!! Then she had them stick a swab up my nose farther than I thought possible. Again- SO worth it. Same larvae sacs found. That must have given her a thought cause then she had my gyno check out my other "mucus membrane". Bingo. Im having a CT scan Wed so it will be interesting to see those results. The Noxafil is obscenely expensive. 3 bottles cost $1800.00 (less than a months worth!) BUT ins pd all but $60.00. My Dr put myco?something- (whatever the name for fungi infection is) AND morgellons!! She warned me it could hurt chance of ins paying but (dont laugh pls), I felt since I was fortunate enough to have such good Drs I was morally responsible to use it for the greater good. BCBS never questioned it. Again, Im sorry I couldnt let you know sooner.
|
|
|
Post by kiki on May 19, 2008 20:58:36 GMT -5
I was on a "new"(think its 1yr but my pharmacist said that's considered brand new so not sure what new really means). The script was called in and when I went to pick it up it was flagged that pharm wanted to review it w/me. The name is Noxafil- now I concede up front that my immediate thought was perverse delight at the visions the name evoked(as in oooh that sounds like it'll kill alot of stuff)! I asked him if it had a scull and crossbones on it and he said "nah, but I thought about slapping a Mr Yuk on it. In less than 2 wks, I had a whole new level of weird symptoms. I will not believe Im cured until a)there is proof positive identification and b)when I am symptom free longer than I had it. My instinct tells me "it" has hijacked a virus. At the very least, it has had noticeable impact on the cold sores I USED to get. I dont know whats wrong w/me- I feel like Im gonna sound like a bad infomercial "You too can be symptom free"!! I fell for that claim waaay too often. So with that in mind, I will say this drug has changed "something". I wanna ask your opinion about the weirdest thing. In less than 2wks I got multiple small bruises that turned into what looked like fat blood blisters. Weird part- I had one on ankle and stretched foot to put shoe on- my ankle got one of those fluttery tics and felt like ice was on it. I swear I didnt touch it--it popped out. Do cysts do that? When I got it off my foot, it was reddish purple and squishy. I put it on tissue and went to get empty script bottle to put it in alcohol. I was back in minutes.and it had turned black and looked like a piece of charred wood and disintegrated in the alcohol. I had 73 of them in 7 wks. I was leaning over tub to rinse hair and my scalp felt tight - like when you pour real cold water on it . Then scalp "loosened" and 3 came out my nose- nose did NOT bleed. They were largest- like a marble on steroids ;D It was the last time I felt or saw a single symptom but time will tell, ya know?After some of the stuff I took- well no way can I believe that it could be over just like that.
|
|
|
Post by kiki on Feb 3, 2008 23:45:54 GMT -5
I just got a call from Vivi and late this afternoon the hospital called her Dr to tell her the ins co had called and said they were rescinding the approval for any more of this treatment. It set her doc off in a major way!! this isnt the first time her doc had it out with her ins co but this one was the straw that broke the camels back. Boy oh boy did I miss a good show! Her dr called her ins co from the nurses station right out in the open and when she asked what the reason was they said after more consideration felt it wasnt warranted. One of the nurses said her dr was so mad she looked deranged. Her dr replied loudly and snidely well halleujah this must mean you were able to solve this devastating mystery that escaped an internist, neurologist and toxologist. Congratulations and since you know what is or is not the best course of treatment, I along with countless other medical professionals wait with bated breath for your diagnosis and reccomended course of action. The nurse said ins co called back in less than an hour stating they were sorry and had been looking at the wrong file and there was no problem with this or any additional treatment if needed. Nobody bought it for a second. The nurse said when she hung up the phone she looked like a cat with a canary in her mouth. One of the nurses laughed so hard she p--d her pants and had to call someone to bring her clean undies! Man Im sorry I missed the show. I'd have paid to see it. Aint that a riot!?
|
|
|
Post by kiki on Feb 3, 2008 20:02:24 GMT -5
Vivis Dr sent her to a neuro who sent her to a nerotox and all 3 are sharing her files. Her Dr says co-patienting is very beneficial since each one will have different observations and that male and female Drs tend to focus on different things so it gives a better perspective when put together. Vivi thinks her Dr is so openminded because she has horses and its common for them to get parasites and worms so its just a matter of fact thing for her and she said its pathetic that the good ole USA pharms readily dole out meds to other countries but are very arrogant to think we're above such diseases. Said she has no idea how some Drs got med license if they dont even understand how easily things are transmitted. Now I sound like Vivi on her soapbox! Her Dr only let her do this if she went to the hospital. I think because of how much weight shes lost plus she has some drug allergies. Most people dread chemo and similar treatment but to hear Vivi youd think she hit the jackpot. Makes me want to cry but when she told me about trying this I started to console her and she got snippy and said Im very excited and blessed for the chance to try this and if I didnt understand that I obviously havent been paying attention! I do understand and she knows it but said this is one of those life altering things and its impossibe to truly grasp it unless you have it. She said she doesnt even have words that will describe some of the symptoms. Shes become very defensive since she got this even though we always believed her. Its like she has to prove it. For a long time she quit life and retreated to her own little bubble. We were insane with worry. Her husband finally sat her down and said he knew she was trying to protect us but it was punishing her nearest loved ones by cutting us out of her life and that she needed to keep in mind that she could have had this for years with no symptoms. Hes about the only person that has a chance to sway her when her mind is made up. We've been friends since 3rd grade when she came up to me at recess and said my shoes would look better with her dress so we should trade. I didnt even know her name but I was smitten. We both got in trouble when we got home. Her for being maniipulating and my dad was disgusted that I was dumb enough to cram my feet in shoes so tight my feet were covered with bloody blisters. She continues to amaze me. Shes more distraught about how this affects us than she is about herself. I dont know what reason Dr gave for this treatment but recall Vivi saying her Dr didnt want to put morgellons for anything because she fears ins cos will treat it like lyme and limit treatments. She said her Dr has gone out on a limb for her so often every time she gets new prescription she expects limb to break and have ins reject it. From what she told us about how some people with this are treated I guess she did hit the Dr jackpot. She would never admit this but last Easter she wrote down the names of all the members on this board and somehow talked her mom into reciting every last name for prayer request. Toward the middle her mom broke down and was crying too hard to talk and a man sitting near her went to her and took the list and read the next name then passed it to the person next to him who did the same and that paper was passed from person to person till every single name was spoken aloud. On the funny side, some people couldnt help but chuckle at some of the names but it didnt lessen their sincerity.
|
|
|
Post by kiki on Feb 3, 2008 2:28:11 GMT -5
When Vivi asked what was in her i.v. she didnt have any thing to write with so spelling probably wrong but its certrifaxen plus orally atavacone and melofloxne. Her Dr said she had to stay in hospital at least 2 wks the she can do out patient if she didnt have any problems. You can tell shes miserable but she said no physical pain can be worse than the mental anguish of being so utterly helpless with this curse. She started having a reaction in only 15 hours. Severe vomiting, pounding migraine, and her ears itch and burn but nothing else, and the most surprising thing to her is her skin. She didnt have lesions but her skin got a yellowish crust on it the first night. The first couple days of that was hard cause she had to have eyes bandaged and saline gauze in her nose. Her Dr is a gem though and ordered pain and sleeping meds so she could pretty much sleep through the worst of it. She couldnt shower but 2x a day nurse wraps her in saline soaked gauze for about 2 hrs. She cant put lotion on but said her skin doesnt hurt or itch. Her scalp has a whitish waxy crust on it and her mom said looks like cradlecap. She was warned that shed lose her hair so had a "Billy Idol" buzz cut and said if she could do one thing over shed have done it a year ago. Shes hysterically funny cause she has no brows or llashes and said she looks like a lagoon creature but insists on pretty scarves. Dr said ok but cotton only and washed in borox then soak in saline and put on wet. She is more like herself than in 3yrs. Her mom said something was different in her face then realized it was something in her eyes. Vivi said its the look of hope. Ok now the really weird stuff. When nurse removes gauze her skin peels off with it and there are twig like things on guaze. was told it was something that rushed out of skin alive then died so it wasnt that form when it exited. I was there when she was told this but dont remember if was bacteria or what. Whatever it is they said it looked like twig because it furled up tightly when dying. She said she doesnt feel it come out and is beside herself with excitement. Her face, legs and arms now just look sunburnt. She'll have to be on this treatment for 3 months and may have to repeat every 3 months for up to 2 yrs but Dr said as quickly as shes responding probably only 1 or 2 more times. Vivi said it feels like her skin can can breath again. Other than the skin reactions, the side effects are same as chemo. Still she said shes too grateful to be bothered about the side effects. Shes very humble that she is being treated when so many have been abused by medical community. She keeps saying how did I deserve to be so lucky. Can ya believe that? She said if this gives her life back she will make it her life mission to help others get the same respect and treatment. Take my word, if she said it she will do it. She sends hope, prayers and love to her fellow victims.
|
|
|
Post by kiki on Feb 2, 2008 0:59:10 GMT -5
Vivi is in the hospital getting IV treatment and made me swear to get a message to a Sue. I sent flowers yesterday but when I went to visit today there were no flowers in her room which was weird cause I knew 2 other friends sent some too. I called florist and was told hospital wouldnt let her have flowers or plants. They had called me but I live 3+ hrs away and left yesterday and stayed at motel since Im not great driving in big city traffic. Well I called florist and they said would exchange for stuffed animal or balloons and would be making daily delivery there in half hr so I asked for balloons. I was in her room when they came and delivry man said he owed her a balloon since somehow one got loose in parking lot. Vivi asked him what color and I laughed and said what difference did it make. She said it mattered and the man said yellow. Her reaction was nuts. She said its Josh sending a message. I asked what she was talking about but it made no sense. She said to tell Sue on this board. I think shes in la la land from drugs shes on but promised I would send this. Her husband brought her laptop but nurse took it so she had them give it to me so I could use it in motel tonight. Its not like her to be so fanciful but it must be the drugs.
|
|
|
Post by kiki on Dec 13, 2007 2:08:59 GMT -5
Has any one ever come across any info on a fungus from a city near Bogota Colombia(think the place is called Meto or something like that)? Apparently it wont show up in blood cause it gets in the fatty tissues. I really need to take a tape recorder to my appts since I forget things so easily. Probably a long shot but when a person is desperate they'll latch onto any possibility.
|
|
|
Post by kiki on Dec 13, 2007 2:33:00 GMT -5
There are alot of old trees in my yard and one got hit by lightning and then started dying. We tried to save it but the tree guy said it was just too diseased to save. It had alot of nasty looking fungus on it. Anyway, it was cut up and some of it was already dry and shortly after that we had a pool party and had a firepit. I stupidly threw some of it in the fire before I noticed it was covered w/fungus. I dont remember what kind of tree it was but this post made me think of the black stuff that came out of my skin-I posted it awhile back. I have convinced myself that fungus is involved. Thing is Ive been exposed to so much crap around my house, I dont know what to think-heck Im not sure I even do think anymore!
|
|
|
Post by kiki on Dec 9, 2007 21:35:28 GMT -5
The mold was not visible. In the past 2 years we had 2 different home inspectors check our house and one said there wasnt a thing wrong and the other did find mice(lots of them) in the walls and determined they got in through a crack caused by a large tree limb that fell on one of our side porch roof on another porch found pigeons nesting in the eaves. There was tons of bird poop and that porch was totally replaced. That explains the histoplasmosis I had. But the mold wasnt discovered till air tests were done. Scary. Oh and then there were the bats found in a chimney and a family of skunks under a 3rd porch-one thought to be rabid but wasnt tested cause it ran away before hubby could get his rifle. When it ran off it was weaving and stumbling around so it was either rabid or drunk! But the mold was in a space behind my washing machine and wouldnt have been found until really searching for it. Fortunately the black mold was only found in the laundry room but there was other mold in other rooms-said it was allergen-but still had to be removed. Apparently when your immune system is compromised theres no such thing as safe mold. Hard to tell how long some of this stuff was there but as stupid as it may sound, I was kinda relieved we had all this mess cause even if it isnt the cause of me being sick, it most certainly wasnt helping me.
|
|