I'm writing for Stephen today. He's become pretty disillusioned with this whole fundraising idea, which is why I've been trying so hard the past several weeks to revamp it by trying to find some publication or tv media outlet willing to publish the story I wrote about his experience. I've also been in contact w/several local businesses about the idea of leaving a collection jar at their location (I could sure use someone doing this for me at times - I've been carrying this fundraising idea for so long now I am ready to hand it off to someone else). I've either been told "no" or am waiting to hear back. We've been thinking of changing the title to Medical Fund to Medical/Life Fund given what this disease and the on-going search for treatments has cost him and our family. It's rendered him unable to work of course and Social Security doesn't pay what we need to survive as a family. It drained our savings account early on. When I have time, I've been trying for months to find some sort of part-time writing gig(s) I can undertake where I work at home around my own schedule, with no luck thus far. Seems I have been aged and experienced out of that job market (amongst others). Working outside of the home is not doable given the expense of child care (we do not qualify for state $$ assistance in this area) and the fact that we would lose much of the assistance we are on, so in the end, we would be in the same if not worse financial situation. And the idea of leaving Stephen at home every day alone is not a responsible decision given his cognitive issues - again caused by this disease. We have a caregiver but she's only here 2x/week for 3 hours at a time. So you could say I feel trapped when it comes to bringing in more money for my family. We both do.
If everyone who reads this would donate just $5 then share it with their friends/family and encourage them to do the same, that little amount would add up quickly. We need some sort of break in this area and soon because the stress has worn on us and we are running out of ideas. We are planning on organizing a community yard sale where local neighbors have yard sales on the same weekend and donate a percentage of their proceeds to his fund. Thankfully we have a neighbor willing to help in this area because taking on something like this alone is just, well, overwhelming. When I say I AM TIRED I mean I AM TIRED and in real need of a vacation from all of it as well as a financial miracle so we can remove that burden from our stress plate. I want my husband well - DESPERATELY - and there are other things I want him on and to try but without the money, such things remain a wish.
Currently, Stephen continues to see his Chinese Herbalist/Acupuncturist, is still on the herbal tea and now the practitioner has added in once-a-week energy treatments. He (the practitioner) says my husband's sick in this area as well. As one who has had energy work done, it is authentic and powerful. Stephen wasn't much of a believer in the beginning, but now he is. His symptoms are still the same - no change in either direction - which I guess can be seen as a positive in some ways. But still...SOME movement forward would certainly be welcome after nearly 2 years of treatments. Also still trying to find someone who can read the Methylation Pathway genetic test results.
Please help my family. Thank you. Vicki Trinity
Hi again everyone, well its July and very hot! I am off the Bhuner protocol for now again, every time I get to three to four weeks on the protocol I get very, very sick and have to stop due to too many reactions.Either way I am so sick of being so sick every dam day. Dizziness, pounding headache, sometimes so strong I have to shut my eyes,lay down and cry till it goes away. Some times so dizzy I have to lay down and hold on to the bed or wall until the dizziness subsides. My short term memory is pretty much gone, so I spend a lot of time just going back and forth until I can remember again, usually not. Not to mention the sharp pain in my left lower stomach area, oh and almost blind in my right eye due to a severe cataract and of course the brain tumor.The Lyme is now conquered my brain as well as the rest of my body is now comprised.
My regular M.D. apparently talked to a CDC infectious disease doctor against my wishes about my blood test results for the immunodeficiency markers in the four panel blood test. Why, who knows? Corrupt doctor collusion? Yes, because he is the same doctor who said the western blot blood test is too sensitive, meaning 4 panel versus two panel test.Try to take the Elisa test, HE SAID, which I have taken three times with the same result. I pass, all after taking the western blot 4 panel blood test at a lab he says the CDC refuses to recognize. How convenient for the CDC. No wonder 300,000 people a year are getting sick with this disease!
When I went to see him, my regular MD, he had a severe mean negative attitude toward me. Because I had only one low marker and normal HGH, ?, he accused me of making all of this up and that its all in my head. He was also very sarcastic, abrupt and rough with me in the exam, I had been throwing up and bleeding, defecating all at the same time, prior to that,really hard to live that way. My caretaker was a witness to these events.She was so shocked she wrote a statement out for me and I filed a complaint with the head office. The doctor called me up and apologized saying he had a frustrating morning with patients. Needless to say, I will not be returning to him. So now I am without a MD primary. The Lyme now literally has a choke hold on me and pinned me to the floor of life. I have been battling this disease for more then 14 years to LIFE and did not even know what I was fighting against until 20 mnths ago with the western blot blood test positive confirmation. When I collapsed again and became horribly sick which is where I am today. I know its a lot, even for me to try and understand in my mind about this disease. If anyone really wants to know about Lyme I suggest they check out the website written and run by medical doctors who really understand who horrendous Lyme disease really is. Oh and I am fighting a nasty virus for 15 days now with heavy chest and head congestion as well, it went through the girls already , they are well again, thank god. The website IS called ILADS.ORG! Please read and spread the word about this website! Please donate what ever you can, thank you everyone in the world. PRAYING FOR PEACE FOR THE WORLD AND ITS PEOPLE NOW, TODAY! NO MORE WAR! NO MORE SUFFERING FOR THE PEOPLE OF THIS WORLD! THANK YOU FOR READING THIS HUMANS MEDICAL BLOG! PEACE.
Hello one and all,
An update on my health: I had a big pow-wow with my neurologist yesterday, and basically my c-5 and c-6 show advanced, degenerative disc disease, and moderate arthritis in my upper spine. The tumor we will keep an eye on for now. I'll go back in January for another MRI, to make sure it hasn't grown. I went back on the Buhner protocol two weeks ago, against the advice of the Chinese Herbalist Doctor. I had to be proactive in my own healthcare, because the Lyme really has a hold on me and I could feel myself going the wrong direction, to many Herximer reactions. Of course, I experience quite a few of those on the protocol, so it's kind of a double-edged sword. I'm also going to get a four panel blood test from my immunodeficiency markers, which I'm pretty sure will be positive in my bloodstream. Which means I get to go on gamma globulin injections daily or weekly, which will be painful and very expensive. I already have a nurse lined up to inject me. This is my plan to stay alive for now, and try to beat the Lyme into remission. Every dollar matters to us, as I've stated before. I would be very grateful for financial donations. I want to say a huge thank you to my good neighbor Dave Chiller, his wife, and his mom, Mrs. Chiller, who live just a few doors away and graciously donated several hundred dollars to my medical fund on Memorial Day. Thank you so very much!
Universal source blessings to all,
Just an update on my health: I saw my Chinese Doctor on Tuesday, and he said at this point to stay off the Dr. Bhuner protocol, and to stay on the herbal Chinese tea remedy. I was off the tea for one week, and my symptoms multiplied immensely. So now I'm back on the tea, starting yesterday. I had really bad personal family news for five weeks in a row, and the doctor said the overwhelming stress shut off my immune system and methylation pathways further. I am just as sick now as I was in the beginning. I have only managed to gain weight twice in twenty months. Both times I lost the weight shortly after gaining it. I was only able to gain 30lbs, but I've lost it again. Normally I weigh about 225 - 235lbs, but I am now 170lbs.
I also had to have another fast MRI based on the previous information. I'll have a big powow with the neurologist at the end of the month to compile all the relevant data. I'm really hoping for good news. I have not had any donations for six months. Please donate, people. Every dollar counts.
Thank you for taking the time to read this.
Universal source blessings to everyone.
If it isn't bad enough having a diagnosis of late-stage neurological Lyme disease along with microplasma babisia and bartonella, which are co-bacterial blood infections, I then found out when I went to the neurologist yesterday that I have a 6mm tumor on the left side behind my right eye. I was really hoping for better news. If you can, please donate. Thank you to everyone for your prayers and support. Money helps, too. Universe source of all, blessings for everyone. Stephen.
Under the advisement of my doctor and acupuncturist, I am off the Buhner protocol. 34 days and just get worse.My body cannot tolerate any herx reactions anymore or right now as I'm simply too weak and not methylating properly, in spite of multiple steps to reverse the trend for 18mnths. Both medical professionals feel they are causing more harm. So for now I'm on a very bland diet and taking tiny bits of chinese herbal tea while awaiting results of the histoplasmosis test. I really want to live,its just getting harder and harder to win this battle anymore. Please donate everyone! Thank you everyone for helping a brother who is down now.
Today it's been one month on the new Stephen Buhner 5-core herbal protocol. It's made me herx a lot more. Had two really bad days - one was Friday. Bad days are worse than ever - really painful to breath much less move. Those are 10 days on the pain scale. Also waiting test results for IGF-1 and histoplasmosis, also known as Ohio River Valley Disease. Histo is a very deadly infection if left untreated and like Lyme, if I have it, it's likely been for most of my adult life, which means it's systemic at this point and would require heavy duty anti-fungals, likely given intravenously. If the results are positive, I don't know if I can do both treatments at the same time. As always, please donate (as the Buhner protocol isn't covered by insurance) and share and pray for miracles. I sure wish one of these days I could share some positive news as I'm really tired of negative news and feeling so damn sick every single damn day. Thank you.
A few new things to report. Ordering the new protocol today. It is going to be more expensive than we thought. Sicker than ever. Miracles needed. Please help. Please donate. I don't know what else to say anymore. Thank you! Help help help!
Dear World~ I need serious help. Unless a miracle happens, I am not going to last another 16 months. I am too weak. I've learned I've had it since childhood, 2nd grade, when I was completely paralyzed with double pneumonia and bells palsy. Massive doses of penicillin knocked back the lyme and my immune system kept it at bay until the late 90's. A series of health issues in 2003 has had me experiencing a downslide of health since then. I'm asking you all to help me raise enough money to try my last protocol, which is an herbal protocol outlined by Stephen Buhner. Please help and share. I really want to live for my girls. Thank you. God bless, goodnight wife's tired of typing! : )
Very sick now. Really need to turn this around asap. Went to a neurologist. Found something on the back of my neck on my spine. Took a bunch of blood and will order an MRI and some other test. Going to look into a local agency for some in-home help for myself. Neurologist wants to refer me to a doctor for the Lyme at OSHU - don't know about that yet. No LLMD's up there that we know of. Have a lot of reservations about mainstream medical doctors treating Lyme given mine and millions of others experiences as well. My former primary still thinks it's all in my head and the infectious disease doctor I saw was a joke. He just read the computer screen and refused to believe my blood test results and diagnosis. I'm giving a new protocol a try once I can raise the money to get the products. It's herbal remedies which aren't covered under Medicare. It was put together by an herbalist who has 30 years of treating lyme with his protocols. As always, please donate what you can and share. Thank you, peace and blessings. Stephen T.
Holiday Greetings everyone. We're now onto a new plan as far as my treatment, with which after 15 months, I am very disappointed. I really thought I would be a lot better but I'm not. I'm currently seeing a Chinese Medicine Practitioner and taking a 4800 year old tea recipe for now. I'm completely off all antibiotics. 15 plus months is enough. I have an appointment with an Infectious Disease Doctor next week and a Neurologist at the beginning of 2014. I'm not holding my breath on seeing either one of these doctors. My symptoms have worsened. So I am exhausting all leads to keep going. At least my primary doctor, after all these years (over a decade) finally acknowledged that I have Lyme so now it's in my chart. The naturopath turned out to be an unethical, questionable and highly unprofessional practitioner. Your generous donations would be greatly appreciated. As I said, I have been on Basic Medicare for 2 months but I have numerous out-of-pocket expenses plus supplements to boost my immune system are not covered . I'm hoping these new docs bring me some new treatment options. Very very grateful I'm still here. Please donate generously and share. Merry Christmas and thank you.
It's Vicki, his wife, and I am writing for Stephen. He's simply too sick and not cognitive enough to compose this. It's hard to talk about how he's doing. He isn't better. At all. And we're frustrated as hell. The antibiotics seem to be making him sicker. He's trying some herbal microbials/antibiotics. Everything he puts into his body makes him feel horrible. He had a DNA test to check his methylation pathways to see how his body essentially functions at the cellular level, in particular how he releases toxins and processes vitamins, minerals, medications. We've learned if people don't methalate correctly (which many with Lyme don't we have learned), it's difficult if not impossible to recover from this horrible disease. There are things to be taken if this is the case so we're awaiting the results to see if he needs to add in even further supplements, medications. Other than that, we don't know what else to do and we are fed up with being told by the medical community to just hang in there. This isn't living for him but apparently, there is no other choice.
Unfortunately, I am going backwards. Ever since I stopped the intramuscular injections, it has been a steady progression backwards - meaning more symptoms returning. I really REALLY need to raise more money so I can go on another intramuscular injectable drug - this is imperative for me to come out of this disease. I have two great reasons to live, my 3 year old daughter and my wonderful wife. Please help me fulfill this wish. My next step is to contact uber-wealthy people and appeal to their compassion. Not kidding either. Universal Source blessings to all! Steve Trinity
Had another doc appointment. My wife and I believe the Babesia medication isn't working. Doc still wants me to continue the same treatment though. She says I should recover 70-80% in another 2 years. I'm depressed. I don't feel good. I no longer have good days. Try to drag my butt through each day with sheer mental will power and that isn't much. I just have to go on. Just so tired of it all. I don't even know what to say anymore. This is not living. But somehow, some way I'm gonna go on. I need miracles every day. Please donate freely. I need continuing support if I am going to stay alive. Every dollar matters. I am on the cheapest, and as a result, slowest path to recovery/remission.
Had the fundraiser at Papa's Pizza here in town on Monday. Raised $148. Yeah! That will buy two of my medications for the month. Still trying to drum up support. Still very sick. Another rough week. Really sick and tired of being sick and tired but you know how that goes. Primary antibiotic is cefdinir - hoping I don't show an allergy to this too given approx 10% of patients who have allergy to penicillin end up having same reaction to cefdinir. Doc never told me that - my wife found that out during her own research. Thank god for my wife. She is a tremendous ally and advocate. I'd probably be dead already if it wasn't for her. Thank you my wonderful fantastic wife Vicki. She's so awesome. And our girl is too! Onto more fundraising.......please share! Thank you everyone. Peace.
I've regressed even further since last weekend. I've had to stop the penicillin because of allergic reactions and horrible side effects. I feel like I lost all 10 months of treatment. Going to try and get back again. Switching to Cefdinir, going back on it again. A big shout out THANK YOU to Grandpa Don, who has been a HUGE supporter since my diagnosis. Thank you everyone for your continuing support, which is greatly needed at this point, just to continue forward.
I went to the doctor's today. I'm still showing lots of symptoms and I've dropped a few pounds. As long as I don't lose anymore. I'm going to start another round of my anti-maleria drug. She's changed the drug routine again as well as added more supplements to increase my immune function, which is still not where it needs to be to fight these infections. Still trying to drum up support for the August 5th Fundraiser at the Corvallis Papa's Pizza. Come one, come all, eat lots of pizza. Thank you! (and remember if you wish to attend the fundraiser, you must contact us on Facebook to request a flyer, which must be presented at the time of purchase).
I've been on the new medication regime for about 3 weeks now. Very expensive. More symptoms have returned and pain levels have risen. I'm still trying to get better and raise funds. We are having a Fundraiser at Papa's Pizza here in Corvallis on August 5th. If any of you are interested, post an e-mail address and I will e-mail you the flyer, which has to be presented at the time of your food order. Thank you.
I had to stop the intramuscular injections due to allergic reactions two weeks in a row, the second week being very strong. Don't want to mess around w/antibiotic allergies and resistance. So now I"m on a new regime of oral antibiotics again - many different types of pills every day - just as expensive as the intramuscular injections. Really so tired of it all but I have to keep going but if I don't there's only one alternative and I have three reasons to keep going. Please donate and share. Thank you. Every dollar matters. Stephen
Week 16: Have internal scarring in muscles and this week, I developed an allergic reaction to the shot. Still have 4 shots left to go. The shots are very very painful this round. Doctor is recommending a different intra-muscular antibiotic, which is stronger and more expensive. You do what you have to do to stay alive though. Thank you to those who have donated. Please help by donating, even a small amount, and spreading the word about my fund.
Two weeks into the intramuscular injections after taking a week off and doing other drugs to treat the co-infections. I've been feeling really rough, even more so than I normally do after the shots. Cognitively, I'm not doing too well. Some of my symptoms have come back so I'm not too happy about that. I'm just taking it day by day, hoping one day I'll be out of the lyme fog, intense pain, dizziness and nausea.
Thank you again to all of you who have continued to support my medical fund. Please share with those you know. Peace and love - Stephen
hello all~ sorry for the lag but my computer crashed w/a nasty virus. just finished the 10th week of shots today (intramuscular injections of bicillin). gonna take one week off from the shots and do a round of coartem, anti-malarial drug and then go back to another 10 week round of weekly shots. still doing the other drugs, doxy and rifampin and amoxicillin and other necessary supplements. i've gained 12 pounds in 6 months which is a big plus. still in the woods but starting to see some results from the treatments. need to ramp up the fundraising again so any and all help and sharing is very appreciated! very grateful to be here at this point.
Again, Gratefull heartful thanks for all who have helped in any way,Thank You.
Really sick now,shot on wed, week 4,threw up for 24hours,no food for 48hrs and very little water,threw that up as well,little girl and mommy real sick too. I guess we all have same bug, Mommy and baby girl got sick tue,one day after both recovering from last bug,I got it wed,same day as shot. I hate it when I am powerless to help my family.Called doc,she said we can take short break after week 5. I cannot endure anymore. I just need to feel human again and not so sick.And I pray for my girls very much now.
i (stephen) feel like i was in a semi that was flipped, blown up and then rolled again. lots of crying today. pain meds aren't working at all and don't know what to do anymore about the pain other than suffer through it. that's all there is. just keep going.
To many years,months,weeks,days livin at 10.No other choice but to go on.Or stop. Really tough times,every day. Sick of being sick.
Had my first injection last week. It hurts like hell. Still trying to recover before I do it again later this week. Yay. Go me!
I have pretty much recovered from the nasty flu/cold virus I had. Took a month. I am currently taking 2000 amox, 1000 doxy,150 rifampin, trazadone,naltrex,glutiathione, and another anti-viral medication and a whole bunch of supplements everyday. Saw the doc on mon. she said I gained 2 pounds after 4 mnths,yay, so now we have to go to the next level starting today.Dropped another 650 for the bicillian for a five week supply, the doc said I need to do this for ten weeks, at two injections a week. I have to go to the doctor to do these injections. More money. I am really afraid of these shots as they are super painful and may cause scaring, but I have to do what I can to stay here for my family and me. I have felt really bad for a long time and the doc said I will probally feel even worse with thes injections not to mention the side effects, soo here I go ,wishing I was well already. Please donate if you can, thank you.
Stephen is back on his medication although he's still battling the cold virus. Lyme and a cold don't mix - his immune system is already compromised! It's a helpless feeling I experience watching him. On another note, I need to do more to rev up the donations! I'm sick myself at the moment w/the same cold, but my brain's still trying to spin out creative ideas for my husband.
Really sick now, threw up for an hour yesterday.Have to stop all pills now, too sick.
12-22-12 I cannot blinklin believe it.I now have a cold or flu or whatever now. I cannot endure anymore.I need to just rest and I am not gettin better. I just need a break and feel good. I think a hospital would be good now.
12/21/12 I am so tired of this. Back on the antibiotics, now the malaria stuff seemed like a breeze, not really it was rough too. It's the herxing with the antibiotics. Today was even worse then yesterday, just can't seem to get any relief, especially breathing and pain. 10 weeks is really long, so is 17 years or even longer undiagnosed. At least I know what I am trying to beat. Everyone is telling me just give it more time. Tomorrow hopefully will be better, after all I live in the best neighborhood on this side of the universe. Thank you everyone who has reached out in any way. Thank you for having compassion for me, it really means so much. Steve
Vicki's update: I wish there were something he could take for the pain NOW. The pain meds he's on take 8 weeks to kick in. He's on week 2. Six more weeks of these pain levels seems unimaginable. My husband needs to be in a hospital or clinic that treats Lyme, hooked up to an antibiotic drip and a morphine drip (or similar pain relief), PERIOD. You can either rip off the band-aid or slo wwwwwwly
peel it back. Treating Lyme the way he's having to go about it, all because of money, is ridiculously slow and painful - for the entire family. Here it is 2012 and people still have to suffer so much unnecessarily because of the brokenness of so many things that are so easily fixable. That's why we're trying to raise money so he can be treated in the way he needs. Lastly...Thank you, as Stephen said above, for those who have shown so much support and compassion. It doesn't make us feel so alone.
off the antibiotics for 3 days to treat the babesia with the anti-malarial meds. feel like doo doo. lots of nausea and dizziness and high pain.
by far the worst day yet- esp. in terms of pain. his jaw and teeth are killing him now. he's been on pain meds for 10 days and they aren't working. he can hardly walk today - even w/his cane. 9 weeks into treatment and no improvement. i'm not a big person so i can't do much in terms of helping him walk and get around. it's stressing us all out - including our little girl who has really reverted on some behaviors as well as amped up the typical 2 year old stuff. i was trying to cook dinner earlier and she was acting out while he was calling me for assistance. !!!!!!!!!!! oh - and i noticed the fire in our fireplace was going out and needed tending to as well.
if the system were loving and fair, he would be in the hospital hooked up to IV antibiotics but that is not our reality at the moment. that is however what he NEEDS. we have a call into the doc to see if he can rev up those pain meds. all i can say is UGH UGH UGH
we picked up new medication today. one is to help him sleep. another is an anti-malaria drug - which is to help combat the babesia infection, which mimics malaria. he also picked up more antibiotics. we are still waiting to hear from disability services as to whether they will help us get an RN or other similar caretaker to come into the home and give him muscular injections of antibiotics. that's the doctor's preferred route and it certainly is ours given it's a much more effective, quicker route. plus the relief it would give his digestive tract which is SO inflammed - his stomach is in continous pain which waxes and wanes but never goes away. the cost is still a factor though at $100 a week. today our little girl gave papa a hug and said "get better daddy". she's our angel - one of many who continue to come into our lives. our neighbors continue to humble and touch us deeply. one stopped by today and took a flyer i made and got busy contacting others about our situation. her kindness (and that of others who are showing a desire to help us) makes us cry. the kindness is overwhelming - and so greatly appreciated! to all of you who have responded and/or donated - THANK YOU SO MUCH!! you have NO IDEA how much this means to Stephen. it gives him motivation to keep on going - knowing people really do care about him and our family! hugs and blessings to every one of you. i've included a photo to show stephen before he got really sick (taken about 2 years ago). while he still had numerous health issues due to the untreated/undiagnosed lyme, this was before his health seriously declined and he lost all that weight.
what a day - the kitchen is beginning to look like a pharmacy! new drugs were added into the lyme treatment. we're checking into taking a new antibiotic intra-muscularly which would give his stomach the break it needs PLUS more effectively knock out the lyme. he would need his doc or an RN to do that (the injetion) and that's more expense we cannot afford on our own - the drug itself is $500 for just 5 weeks. another really difficult day for stephen.
Stephen is having a very hard day today. We thank all of you who have so graciously donated so far!