|
Post by overandover on Sept 27, 2009 18:02:21 GMT -5
I got back my most resent Pet/Cat Scan and the doctor tells me I have more like 3 years and not the 1 year they told me I'd be here, said I responded very well to the chemo. I had 4 rounds of Carboplatin and VP16 and in the middle of that I did 30 chest radiation visits in 15 days (the new England Med. Journal) advises doctors to do the rad. twice a day and not the once a day they have just finished a study showing that there is a 20% better chance it will work doing it twice a day for 15 days, 6 hours apart. That was a pain in the you know what.
But I got through it and I'm still here, still got Morgellons, so wondering if we will have to bomb this chit out of us?
I did started having big blood problems the last 2 rounds of chemo. I've had to get blood from 4 strangers (and found out from Red Cross) that they DO NOT test the blood in USA for parasites, nope they stopped testing for it in the 1980's because it cost to much to test and as they said, not much chance of it. WHAT? Have they looked at our country lately. We are a mix of everyone from everywhere, so back to the parasites jump off at the boarders?
I'm, feeling very blessed folks and very thankful for all your prayers, believe me I don't have much faith in the treatments. The doctor said to me the other day, I got you well and you still don't trust me, whats that? Sorry pal "it's a side effect of Morgellons"
But I did have to thank him for the pain relief because I did feel better pain wise once I started chemo.
I'll still be getting treatments for my blood the next three weeks. I've been getting shots on day four of chemo all along, but they are 5K each and insurance has told us no once because I'd not waited 11 days before needing the next shot. The drug is called Lunesta (sp?) I get it in my belly and it makes my bone marrow go into overdrive to fix my blood. It's side effect is bone pain but nothing I can't handle, can pretty much handle anything after full blown Morgellons.
So thats my good news and I'm so thankful to all of you, You guys have been through it all with me, always there for me. I couldn't find better friends in this world. And I wish God could here our prayers for Morgellons relief.
There has to be a big lesion here somewhere, maybe he has really big plans for all of us one day. Maybe we are the ones, I sure know you all are the very best and I love you all so so very much.
Now my bad news Last week I started smelling that funky Morgellons smell real bad in my home. Tom said he didn't smell it so now I'm sure the man has a clogged up nose because it smelled so bad.
About 3 months ago he took the dogs into for shots and i ask him to have her look at a knot on Ladybugs back, he did and she "the Vet." said to tell me not to worry it was only a small cyst.
Well the smell was my dog, the knot had a hole inside it and now looked like a lesion, so off we went back to the Vet. She pushed on the lump and a fiber ugly nasty stinky fiber ball as big as my thumb came popping out of there. And lord did it stink, so we found the smell.
She did a culture on some of the black gel that came out of the hole and it came back Pseudomonas Aeruginosa. I tried to look it up a bit today but still pretty brain fogged here, this thread is taking me forever cause I've been having big problems spelling, anyway here some of the things I read about it that sounded very familiar It has a cell to cell signaling system It can survive in almost any environment It has flagellum for movement and it has a bio film.
Please say a prayer for my dog, she's had problems with Morgellons in the past and ended up getting several skin grafts because of it, now it's come back and we can't afford the treatments we had to get for her back in 2004, much has changed in the past 5 years as it has changed for all of us.
She has been such a good friend to me.
Anyway thats what I've been up to, good news, then bad, it's that a Morgs life or what?
Also Friday I went to get up out of my chair and didn't realize my whole leg was numb, went down on my foot.
Did you here a poor foot screaming? Get her fat A$$ off me.
Well that was my poor foot, so I'm down again, foot is very swollen but not black so I didn't go to the hospital. I've had it with doctor visits for a while and just couldn't bring myself to go to the ER.
Wow I didn't mean to write a book here.
THANK YOU, I LOVE YOU, xoxoxoxoxoSuebe
|
|
|
Post by bannanny on Sept 27, 2009 18:14:59 GMT -5
I just love you to pieces! I'm thanking God right now that we're gonna have you with us longer now too. I can't stop crying suebe... I really do love you alot, and have so much respect for you too. Even in the midst of all your trials you can still make us laugh. That's one amazing trait to have my friend.
I'm so sorry about Ladybug suebe... but at least they diagnosed PA and can help her now. You do know that Pseudomonas Aeruginosa has been confirmed in many morgies don't you? Well it has... in fact our sweet Robbie was diagnosed with it too. It's treatable tho as far as I know. What did they put her on for it, anything? I'll put her in my prayers right alongside you... and I know your love for her will make her strong. Our love together in this family of ours will keep us all strong! God is good... He made sure we'd all have each other to help us make it thru.
big big hugs and kisses ~~ bannanny
|
|
|
Post by Sidney on Sept 27, 2009 18:16:36 GMT -5
Dear Sue, I believe you are the strongest person I know. You endure and endure, and somehow you manage to get through all of it with grace, dignity and humor.
I know we'll all continue to pray for you as well as Ladybug.
I'm curious to know what the veterinarian had to say about the huge fiberball in Ladybug's lesion. Surely, there can be nothing normal about that.
Toni-Sue and I were discussing Pseudomonas only a couple of days ago and I hope she will add her input here as she has studied that bacteria extensively.
God bless you, Sue, and Tom, your children, your pets and every single thing in your life including your doctors.
We all love and admire you so much.
|
|
|
Post by friskers on Sept 27, 2009 22:39:17 GMT -5
Dear Sue.....Im so happy that things are improving! Your such a gift here to us all Ill be saying a prayer for your dear dog Ladybug too. God bless you
|
|
|
Post by Sidney on Sept 27, 2009 23:38:28 GMT -5
www.buzzle.com/articles/pseudomonas-aeruginosa-infection-symptoms-and-treatment.htmlDiagnosis of Pseudomonas Aeruginosa Infection A specialist in infectious diseases can best diagnose the pseudomonas aeruginosa infection. In order to diagnose the infection, the identification of the bacteria is important. In hospitals, number of pseudomonas aeruginosa present is large and many patients may carry this bacteria. Some patients could only be carriers of the bacteria, but may not be infected. The body fluids from the infected area contain this bacteria. Samples from the infected area are taken for laboratory tests. The bacteria is isolated and cultured in the laboratory. T The factors that help to identify the bacteria are: They cannot ferment lactose. They have a fruity odor. They multiply at 42 degree Celsius. On exposure to UV rays, these bacteria shows florescence. Treatment for Pseudomonas Aeruginosa Infection As mentioned earlier, these bacteria show a resistance to antibiotics. Thus, a combination of two or more antibiotics is used to destroy the bacteria. These antibiotics can be given to the patient in orally (i.e. in the form of tablets) or intravenously. Surgery is performed in some cases, where the bacteria has damaged a tissue. The damaged tissue is surgically removed. Eye infections, heart infections, ear infections and bone-joint infections may also need surgery. If the infection is too severe, like an infection that has caused wounds in the legs, amputation may be necessary. Infections due to pseudomonas aeruginosa can be cured completely in most cases, with the help of medication and surgery. However, for people who are suffering from severe immune disorders like AIDS and cancer, preventing an infection of this bacteria is the only solution. According to Toni-Sue, Ginseng seems to be an alternative treatment and two topicals are recommended, one being Gentamycin...and I can't recall the second one.
|
|
|
Post by freaky on Sept 28, 2009 1:36:22 GMT -5
Dear Suebe, thanks so much for letting us know how you're doing. That's so wonderful that they gave you three years. Maybe that means you can kick it. Those docs aren't fortune tellers. I don't believe they have the power to ruff estimate how long you have, & maybe they didn't account for how stoic you are, & how much spunk you have. I think I told you they gave Bill's Dad a week, or two, and he lived a couple of years afterwords. You've been through such a horrible ordeal; I'm so happy the really bad part is now over for you. I admire you so much, and love you so much. You have such a unique, and special attitude toward all things, & that just makes you a #1 Babe. I know it was so hard for you to go through what all you did. I hope you are really proud of yourself. I'm sure your family, and everyone here is proud of you. I am really proud of you!!!!!!!!
I'm wondering about the smell. My trash always stinks, and is that just the morg stink on my Kleenex in the trash, or if I could also have the PA. Or, do they both stink? We're talking intensely putrid stink, although I'm not sure it's fruity.
My dog also has a cyst, & I've put off taking her to the doc, because I just thought it was a lesion that didn't open. I'm going to try a new vet. My friend said he was about 80 years old, believe it or not. It seems he doesn't want to quit working. It is possible that some people that old are open minded. My girlfriend said he really knows his stuff, & cleared her dog of an infection immediately, after she had seen other vets who didn't do diddley. Anyway, thank you for letting me know it should be taken care of, so I'll take her in.
My dogs are in bad shape, & Bentley, my male's stomach is pitch black. I spend about an hour every night trying to fix my dogs. Hopefully I get some of the itching to subside, but it seems that's all I'm good for. They have both thrown up 1 & 1/2 " morgs, fat ones, but they just lay in alcohol rotting. A vet wouldn't have a clue, at least not mine.
Your pouch is probably already on this, but if not, you might want to try Panacur (sp?) that you mix with their food, & hopefully that might be all you need. I've been praying for you all along, but left out Ladybug. Maybe if we all start praying for her, as well as our continued prayers for you, you both can get well.
Did your red blood cell count go down? Whatever it is, I hope time rushes by, & you get that taken care of quickly, and you get that fixed without any problems. Take care Sweetie. You have a big place in my heart.
All my love, & big smackers. I hope you don't hurt anymore. freaky
|
|
|
Post by Acacian Immolation on Sept 28, 2009 22:37:44 GMT -5
[/b] where it is known as a hydrocarbon-utilizing microorganism (or "HUM bug"), causing microbial corrosion.[6] It creates dark gellish mats sometimes improperly called "algae" because of their appearance.[/quote] from - en.wikipedia.org/wiki/Pseudomonas_Aeruginosa#Identificationoverandover.. is there anyway you can post your CAT scans? were they taken of your head? .
|
|
flyawayredbird
Full Member
Psalms 91:1He that dwelleth in the secret place of the Most High Shall abide under the shadow of the
Posts: 101
|
Post by flyawayredbird on Sept 28, 2009 23:58:23 GMT -5
Awww Suebe......your certainly a sweetie......and your dog, Ladybug. I'm praying for both of you. Calling your names out before the Lord this very moment.
flyawayredbird
|
|
|
Post by lilsissy on Sept 29, 2009 7:56:57 GMT -5
So happy Suebe you are reponding to the medicine , praying for you and ctbarb as well, keep getting better, we need good soldiers and warm hearted freinds, God Bless you, Jen
Sometimes when I read the sad posts I don't respond because I just want to cry an I clam up but I love you all.
|
|
|
Post by Sidney on Sept 29, 2009 12:25:37 GMT -5
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=163833Thanks to Toni-Sue for providing this link about treatment for Pseudomonas a. GINSENG seems to be a promising treatment. I bought a bottle yesterday hoping it will help my chronic bronchial-lung problem. The topical combination for Ladybug's lesion is Gentamycin and Bactrim, Sue. I haven't checked to see if it's ok to give it to canines orally, but you might ask your veterinarian. Thinking of you and your family and hoping to hear from you soon. Here's another Pseudomonas a. - Ginseng link provided by Toni. tinyurl.com/yb2ywujwww.webmd.com/vitamins-supplements/ingredientmono-1000-GINSENG+PANAX+GINSENG,+PANAX.aspx?activeIngredientId=1000&activeIngredientName=GINSENG+PANAX+(GINSENG%2C+PANAX)&source=2
|
|
|
Post by toni on Sept 30, 2009 8:08:12 GMT -5
Hi Sube, Such wonderful great news you're responding well to the chemo. They're constantly doing great things in medicine as far as cancer goes, and every month, new discoveries. Keep strong, and positive...and you sure will kick this stuff. We all love you so much, and I know it's all got to be so hard but you can do it, you are doing it! And Sids correct, I've read alot on the Pseudomonas Aeruginosa, and it's very interesting in all the trials and errors and what works and what doesn't. I mean there's a million articles out there in medicine on trials and how resistant this P. A. is. Something I'd recently come across (for your furry family member Ladybug who I know needs your help) is topically there's sooooo many combo's and combo's of meds seem to be "the way to go". Also internally - (combos) work best. The doctor would be the one to recommend the right combos. One that has excellent results too, (as there's many combinations too of what P.A can be "teamed up with" as far as bacteriums go-because many times (bacteria of a variety) can accompany P.A., but Bactrim DS and Gentamicin are an excellent combo of meds ((( topically ))). Also, since so many of us, and our loving pets are diag'ing positive for P.A also, it is VERY TRUE that Pseudomonas Aeruginosa can and DOES very often become resistant to most medicinces. When that resistance occurs, the Psuedomonas runs wild and out of control...which is why it's fatality rate is 94 or 96% (statically). It then ends up in the lungs 'usually' and then there is nothing much that can be done. I only want that said, because P.A. needs stayed all over on, like white on rice. It's extremely hearty and dangerous. I did read dogs and cats too can take ginseng, but this is definately something one MUST talk with their vet first. Any pre existing conditions might cause an adverse effect. Same with people, it's always good to make sure ANY vitamin supplement is compatible with any meds one is taking first too. Some 'vitamins' can cause interactions with medicines. It's not the norm, but take no chances. And thank you Sid for posting those links, and I'm glad you got some Ginseng too. Here's a bit from the one link: On the basis of these results it is suggested that ginseng may have the potential to be a promising natural medicine, in conjunction with other forms of treatment, for CF patients with chronic P. aeruginosa lung infection.
|
|
|
Post by overandover on Sept 30, 2009 19:44:12 GMT -5
I wanted to pop in and thank you all for all the love you sent me and LadyBug, she's doing better and again I must thank you for your prayers.
The power behind your love is so amazing to us. And don't ever doubt in your dark hours that the Lord is not hearing you, he is my dear friends and he loves us all so very much.
Like I said "there is a big plan for all of us, we may have to walk through hell but he has such a big plan for us. Tom reminded me about a story in the Bible and of course I can't remember it " also I have to admit I'm not one that reads the Bible, started as a child and had so many questions, was not happy with the answers the Church gave me so my Bible reading ended.
But he reminded me about a story where the people had to go in the ring of Lions, knowing they would be killed, they went, strong and with no fear because they so loved the Lord and had trust in him.
Now we are facing so much pain and if we keep the faith I do believe God has big plans for us. We just have to be strong and know he loves us and face our horror with out fear.
I hope I'm making since right now, my brain is a mess, can't find the words I look so hard for. I'm a brain fog mess but more then ever in my whole life I feel the love of god and the love of you all and it's because of you and your faith and your prayers that he showed me he hears you.
I wanted to answers all your question about LadyBugs meds, what the Vet. said and more but please forgive me tonight. Tomorrow will be a better day, God willing and the sun will shine.
I LOVE YOU ALL SO MUCH and the taste of the sweet tears you give to me are the best taste in the world.
Rest in peace tonight and remember he can hear you and I plead he hears me and helps my loves to heal because you are the very best folks in the whole wide world.
xoxoxoxoxoxox love, Suebe
|
|
|
Post by mercury on Oct 1, 2009 5:33:47 GMT -5
Dear Suebe, I'm so happy that you've gotten some good news on your health. We call love you so much and also need you too. I'm so sorry about Ladybugs infection. I'll be praying for both of you. Much love, Merc
|
|