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Post by kiki on Apr 16, 2010 22:52:52 GMT -5
Mr Kiki remembers her saying it's a rare form of a sporotrichoid syndrome-- 1-2 cases per million population. He also remembered that it's radiology (sp?) indistinguishable from tuberculosus and histoplasmosis. I don't get lesions but I do have tiny red pin-prick spots and very flat, smooth growths. I never had a wart and assumed that's what they were. Most are so small you have to really look for them- and even then the light has to be right to see them. This kind can affect central nervous system, lungs, heart as well as skin and lymph nodes. Teeth and gums too. It does'nt respond to first line drugs but treatment with potassium iodide has been successful. I'm not on antibiotics anymore. As crazy as it sounds, my dr told me to take lemon balm herbal extract (35 drops 2-3 x a day, and grapefruit seed extract (1 capsule 3x a day). Was also told to take at least 100 drops of chamomile a day- I make tea but only drink it at night cause it helps me fall asleep. I am doing a zillion times better and everyday I feel better than the day before. The first 3-4 months on Dr Shoemaker's protocol was like a Steven King novel on LSD. My weight is becoming an issue though. I lost 9 more lbs but the welchol may be contributing to that since it binds to fat cells.
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Post by kiki on Apr 16, 2010 16:38:16 GMT -5
Gosh I have so much to say my mind is reeling trying to organize my thoughts! I'll start with my last dr appt (it was on Tues). This was with my primary dr, not Dr Shoemaker (LOTS on him in separate thread). I have a lymphocutaneous? infection. I'm sorry I did'nt write it down cause I knew it would be on the copy I get of bill sent to insurance co. which is also a summary of what was discussed but must have left it on the counter. She did say it is rare. Anyway, maybe you can help me figure out what it is by the med prescribed? I started to search for it but I just can't concentrate and read the same paragraph over and over and STILL don't comprehend what I read... as in... I read what I see, but do I see what I read??! I'm still taking the meds from Dr Shoemaker but added SSKI (potassium iodide). I have no idea if all my symptoms are from this but would be shocked, shocked! I say, if it were that easy. It's way too much to think just one thing could cause so much hoopla. My next appt is on 4/29 and should have more test results by then. btw-- what exactly is a lesion? Does it appear on it's own? Is it considered a lesion if I caused it? I'm pretty good about forcing myself not to pick at skin EXCEPT when I feel something under my skin that does'nt go away. I fixate on it and guess I go into a trance cause Iv'e tweezed bloody HOLES on my eyebrow and don't realize I've mutilated myself till it's too late. Is that a lesion?(or just self abuse ) Can anyone answer questions about haplotypes? love- Kiki
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Post by kiki on Oct 9, 2009 17:49:02 GMT -5
Oh, this can affect skin immunity too!!! But fortunately that's not permanent.
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Post by kiki on Oct 9, 2009 17:44:06 GMT -5
I had the same thing and was told to put couple drops of peroxide in ears before showering and isoprol alcohol after. Then at night 1-2 drops of odorless, tasteless castor oil. If it has a smell it isnt therapeutic/food grade and should not be put in ears. Was told not to drop it directly into canal but tilt head and drop it so it runs into ears. The warmer the oil the faster it will get in. Hope you get relief-- its aggrevating as heck!
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Post by kiki on Oct 9, 2009 17:25:58 GMT -5
This makes my blood boil for soooo many reasons! Seems to me we should "learn" our own planet before messing elsewhere. But I guess some think everything is disposible--- Ooops we trashed this planet so lets find another one!!! And how do they KNOW it wont disturb anything? They CANT.
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Post by kiki on Oct 9, 2009 16:55:13 GMT -5
I'm gettin confused... are we thinking this HLA DR haplotypes is morgellons? Does your doctor think it's morgellons kiki? What kind of doc is he? What tests did he run? What questions did he ask you when you first saw him? Sorry I have so many questions of my own here, but if he told your hubby he could get you back, I wanna know if I can get me back too. Thanks for sharing all this kiki... I'm praying for ya. I'm praying for us all... hugs ~~ bannanny From what I understand, haplotypes are groups of immune-response genes that control attachment to antigens. My immune system is working per se but my haplotypes arent geneticly coded to get rid of certain toxins. But my immune system doesnt know that and keeps trying to get rid of them which causes a constant state of cytokines? So I have these "killer cells" going crazy that has caused depletions and excesses of various hormones, etc. Someone else can undoubtedly explain it better than me!
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((Ant))
Oct 6, 2009 20:55:23 GMT -5
Post by kiki on Oct 6, 2009 20:55:23 GMT -5
A while back you told me how to send a pm in my outbox to someone else-- (uh-oh, just realized I dont remember thanking you---so, THANK YOU! Now I wanna know if I can post it under an existing thread. You give really good instructions---you make it easy to understand. Mr Kiki is also a computer wiz but he must think I pick up his knowledge by osmosis cause he doesnt give detailed steps like you do ;D
Thanks Ant-- for before and in advance!
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Post by kiki on Oct 5, 2009 19:59:07 GMT -5
i forgot it was you, kiki, i was thinking it was jill. i think this is the treatment!!!!! can you share how much out $$ it is costing you to do this. is your doctor involved also? tell us everything, please. So far I only had to pay for the initial appt. It was $850.00 (it was honestly worth it b/c it was 4 hrs) And not a second of it was wasted. I was whisked right in and it was like an assembly line. First they weighed and measured me, then took blood pressure and made me blow into a tube. I was then taken to another room and he (dr) was there in minutes. He fired question after question, and wanted a yes or no. Period. Then he had me do a bunch of weird movements. Next was a sonogram? followed by eye test. Oh a nurse came in when he was asking his questions and drew 8 tubes of blood and stuck a gigantic q-tip up my nose. It felt like he poked my brain! Then he had Mr Kiki come back and asked him a bunch of questions and went over my symptoms and 4 times said I wasn't crazy!!! Then he said I'm gonna get your wife back for you!!! I then had to go get a brain MRI (the spectro kind). I gotta jump off but will check back later.
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Post by kiki on Oct 5, 2009 18:57:09 GMT -5
KIKI do you know which HLA DR is involved in your case?
Jen I have the lab results but dont really understand them. I'll post them the way they appear-- I'm sure you'll understand it! There was a note with them that said Dr would go over them with me and to schedule a phone consultation when I'm close to finishing the first meds. I got 20 pages of test results and there were notes written on some of them. I will include what he wrote on that page too. His notes were the only way I knew that mine were the "dreaded". But thankfully I dont have the reallllly bad ones. I'll start with the lab results. HLA DRB, DQB TypingDRB1 0405 DRB1 1104 HLA DQ 03EUAJ HLA DQ 03MU DRB3 02EUFD DRB3 -- DRB4 01ARYE DRB4 -- DRB5 -- DRB5 -- Hand written and circled was: 4-3-53 11-3-52B 0405 Hope it can help us get closer to some real answers.
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Post by kiki on Oct 5, 2009 18:00:50 GMT -5
Hi, Kiki, I remember you from the old Skin Parasites Board, assuming you are the sme Kiki who posted there as Kiki Kranz....... Hi Sidney, That wasn't me. Actually that was the first place I found when my search for help/answers began. I did register but never posted. I think my husband sent an e-mail to Lois? requesting the list of tips she had. Truth is I wasn't ready to accept that I had something so bizarre.
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Post by kiki on Oct 2, 2009 20:20:15 GMT -5
Sorry it took so long to get back here. All I can say is this is definitely not a disease for sissies! I cant scan my test results-- had to toss scanner and just havent replaced it yet but in a nutshell I have stupid HLA DR haplotypes. When most people are exposed to biotoxins the toxin is "tagged" and identified by immune system and is removed from blood by the liver. But about 25% of people dont have the genes to code for the antibodies and the toxins arent tagged and stay in body and keep circulating and setting off a chain of biochemical events- including inappropriate immune responses. www.biotoxin.info/biochemistry Some of my results: MSH - 4 (normal is 35-81) MMP-9 - 579 (normal 85-332) VIP - 14.3 (normal 23-63) VEGF- 22 (normal 31-86) Gotta jump off to eat so I can take meds but will be back tomorrow. Have more to tell you---especially MARCONS and biofilms. I still have a really good feeling about us getting well. love Kiki
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Post by kiki on Sept 25, 2009 21:52:38 GMT -5
Jeesh I forgot this unbelievable nugget of hope-- he said the damage can be reversed-(or maybe he said its not permanent) but you get the drift. He even told Mr Kiki "Im gonna get your wife back for you". I will post my tests this weekend even if its in dribble and drabs.
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Post by kiki on Sept 25, 2009 19:08:00 GMT -5
Oh, he will not use the word or discuss "morgellons". I sense a story there but sure wont get any hints from him. I dont much like him- he can be arrogant and down right rude but I do respect his knowledge. Mr Kiki thinks its b/c his passion is research and his patients a "necessary distraction". But he earned my trust when tests came back. And I have had a few moments when I realized I was "thinking like my old self". Mr Kiki said he noticed a difference in my voice--my tone and inflection was like before morgellons.
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Post by kiki on Sept 25, 2009 18:04:02 GMT -5
I have so much to tell but am so weak I dont have the energy to organize my thoughts. But if you google biotoxin illness you can read some of the things Dr Shooemaker says about certain genotypes and toxins. He took 8 tubes of blood for tests and most of the results are back and I'm gonna frame them. So many answers. I have what some call the "dreaded genotype" but to me its a relief. I feel like someone found a needle in a haystack. This is actually great. He's making me baby step into treatment cause he said my body couldnt tolerate more. I started about a month ago and have a very good feeling about it. I dont have that frantic fear that used to smother me for one thing. Will try to post more later or tomorrow. love kiki
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Post by kiki on Aug 7, 2009 3:18:25 GMT -5
Ok... so ya wanna talk sex eh? I had the best sex of my life without tubes and an ovary... I don't take hormones either.
ditto except I take premarin.
Worry not ;D
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Post by kiki on Aug 7, 2009 3:13:25 GMT -5
I sure have heard of Stephan Wenta. I started (age 3) with Marie Rambert till I got (her words) too boycrazy and she turned me over to her daughters Helena and Angela (aka Lulu and Annie). Dame Marie was downright abusive. She used a cane and whacked my legs and crying about it set off a tirade so blistering it was better to be hit with her d**m cane. ;D But oh how lovely when I "got it". Praise from her was magical and I craved it like a drug. But what is it with Russian dancers and sticks??? ;D love ya kiki
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Post by kiki on Aug 7, 2009 1:58:30 GMT -5
Is it possible to send a pm that's in my sent box to other people on board? Its about dr stuff that I dont want to make public but want to share it with our morg family. I just dont have the energy to re-type it all. Thanks computer guru I'm actually allowing myself to believe this can be beat. Deep down, I havent really believed that for yrs. But I do now. love to all kiki
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Post by kiki on Jul 12, 2009 15:17:43 GMT -5
mfromcanada I feel for you. I used to be considered beautiful too but now I just look frail and unhealthy. The weird thing is in spite of all the weight loss, I dont have wrinkles-- oh I have a bit of crows feet and a few lines around my mouth but there is no way my skin should not be worse. I mean I was blessed with great genes but with all the worry and trauma my body has gone through I should at least look my age. Plus its hard to find appropriate clothes. I have to take size 2s to the tailor. I did find the perfect pair of jeans at Gap (size 12 GIRLS ) but wouldnt you know they discontinued them.
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Post by kiki on Jul 12, 2009 14:53:12 GMT -5
That was my take on it too dc. Not to criticize the show Dr Phil did, this was far better for us. At the end of the Dr Phil show, the emphasis was on the mysterious fiber. The Doctors ended with medical help. So most people who saw show will perceive it as a disease treated by a dr.
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Post by kiki on Jul 12, 2009 14:06:38 GMT -5
That was just my poor excuse for humor Kmarie! Usually Im not nearly as funny as I think I am ;D
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