Your observations and overview about autoimmune disorders, their symptoms, treatment etc are right on target, as is the ineffective handling of same by the medical community -unfortunately. Your rheumatologist at least is finally admitting that your wife's condition may very well be beyond his scope and will hopefully refer you on - and quickly (really quickly..) Do you have a caring/knowledgeable family physician who might know who the exceptional specialists are in your region (or beyond) or would do some investigating on your behalf in this regard? Don't ever stop being a squeaky wheel, it's the only way to get any action.
Thank you for your understanding. Yes, my wife did get a personal physician just recently and he seems to be a very knowledgable and professional man. Of course he is just the "gatekeeper" in this little stageshow that we have suddenly found ourselves in. But so far he has been very helpful and honest with us as to where he thinks we are in the race and what we need to do next. It has become soberingly apparent that what logic would dictate in terms of a speedy, aggressive approach to caring for the patient, is NOT what the medical community is all about. My wife's new Internest was quite matter-of-fact to us that the legal aspect of their profession now trumps the medical (unfortuanetly) and there is no way around this. I've known this for many years but until you face the consequences yourself it tends to not have the same meaning. As to your "squeaky wheel" comment ... I am not be nature (or rearing) an aggressive or confrontational person. However, I have found that just "going along" with the program only gets you backrow seats in the nose-bleed section. I feel for the staff members (nurses, technicians, etc.) of any practice because they are put in the position of fronting for the indifference and lack of empathy that some physicians exercise on their patients. They have the unenviable task of blowing people off when they know (and they know the patient knows) that that is exactly what they are doing. These are, by-and-large, good, decent people just trying to earn a living. But look what this system is doing to them ... indeed, all of us. And this, all in the name of healing ... for a price. Ironic, isn't it?
I think you hit the nail on the head with each point you made, I have Sarcoidosis, and I've found everything you mentioned to be true. After seven years of doctoring I just got the Sarc Dx in April of this year from lung biopsy. So I was kind of already fed up with medicine before I even got the Dx.
I'm chronically ill, and a little fed up with big medicine myself so if I sound like I lost my marbles I think everyone will understand.
First with conventional treatment, I used to also take large doses of Ibuprofren everyday myself, until I was told by a neurologist that one of his colleagues that is a kidney specialist told him that people that take large doses of Ibuprofren everyday is what keeps him in business. Except I was taking around probably 2400mgs of it everyday which was kind of ridiculous, but the whole reason I did was because they won't give us the more powerful opiates that we need sometimes.
Next is, "rogue" researchers have been finding for decades that people with "autoimmune" disease have a large amount of pathogens in their bodies. By "rogue" I mean researchers not in the pockets of the pharmaceutical companies. Some have developed antimicrobial protocols, and when given to "autoimmune" patients they have a strong Herxheimer reaction, which only means one thing, and they all tend to slowly improve instead of slowly decline. If antibiotic treatments are given to someone that is healthy they wouldn't do jack squat.
I know when they were trying to diagnose my Sarcoidosis, the main thing they were trying to eliminate as a possible cause was Tuberculosis. If TB is so hard to differentiate from Sarcoidosis then why is it such a big leap for them to believe that Sarcoidosis is an infectious disease, but they just refuse to believe it.
Finally, needless to say I told my Pulmonologist were they can stick their steroids, and I am currently looking elsewhere to start one of the Protocols, called the Marshall Protocol, from an open minded caring physician. So there is other options out there, it's just unfortunate that by the time most people learn about them, and decide to try it they have became really ill, and have a really hard time weaning from steroids. That's why I'm going to get started on it now, not years from now when my lungs are totally bombed and I can hardly breath anymore.
I'm pulling for all of us to get well, and conventional medicine has failed us over, and over again, but I believe we will find answers together because really we know more about these conditions than most physicians I believe, and we don't have decades to wait around for big medicine to finally come to their senses (or lose billions of dollars by curing chronic disease, whatever the case). ~Corvin
I thought I should elaborate a few more details. Some people are probably saying to themselves 'Whoa" if all these autoimmune diseases are as simple as a chronic infection of different bacteria, then why do a lot of my family members have autoimmune disease, it has to be genetic.
Well it's sort of counterintuitive, and there is a genetic link it's just not the "genes" that are solely responsible. If your parents especially your mother has an autoimmune disease, and if autoimmune is indeed pathogenic it's not a far leap to believe you received some of the bacteria in utero, so to begin with you started off with a larger bacterial load than most people. Next is that I believe certain families carry certain genes that are more susceptible to transcriptional error from the bacteria, but the genes themselves aren't defective. Not to say there aren't conditions that are do to congenital genetic defect alone, but I feel all the "autoimmune" diseases are not because of defective genes we were born with.
Just think about it if I had a defective genes that told my immune system to attack my body, how did I ever live this long in the first place?
Most of us get sick in our twenties just long enough for the bacteria to start to take over, if we were born with congenital genetic defects I don't believe we would have lived to see our third birthday, far before being of reproductive age to pass the defective genes on to offspring.
So I believe blaming only genes alone on our illness is irrational, and is a short cut to thinking, that is just another myth that has persisted in modern medicine. ~Corvin
My friend, I don't know you or what you do, but this is the kind of thing I was hoping to find on this type of forum. New ideas that are not being presented by the mainstream medical community. Trust me, I will be reseraching what you have told me here, but at least it's "something" to work with. As I stated in my wife's history, we don't even have a Dx yet (and may never get one) and I am leaning towards Sjogrens or Lupus but perhaps your revalation may play a role somewhere down the line. For that I ... we, thank you.
Can you give me some links to of your own to read up on this?
You seem like an excellent advocate for your wife, and I think she'll do well with you on her side whatever treatment she receives.
I'm a little hesitant to talk about the Marshall Protocol a lot because I don't want to come across like I'm telling everyone to throw away their steroids, and throw caution to the wind. I just feel strongly that it is interesting research, and information that everyone should at least be aware of, and make their own decision.
I'm going to do a therapeutic probe of the Marshall Protocol if I don't herxheimer then I'll reexamine my options, but I feel if I don't at least try it I'll regret it down the road. But I can almost guarantee that I will herxhiemer just because Sarcoidosis is sort of unique in the fact that some of these cell wall deficient intraphagocytic bacteria have been observed in the macrophages of the giant cell granulomas of Sarcoidosis. They don't culture in normal lab cultures, but they can be observed in special circumstances if your looking for them. Most of these bacteria will never be identified through culturing, they will be identified through genetic sequencing. Now that the human genome has been cracked they know what is homo sapien dna, and what is not. But even knowing these bacteria exist in humans doesn't give many clues to their precise role in disease, but just knowing they are there and parasitize the very immune cells that are meant to destroy antigens, and chronically ill patients have a strong herxhiemer reaction to treatment we shouldn't have to wait around for them to be named or there exact role in disease explained because that could still take a very long time even with the mapping of the metagenome that the NIH is doing now. The way I kind of look at it is when you think about macrophages being the immune systems "vacuum cleaner", and these are the primary cells parasitized by hundreds of bacteria usually living in biofilms (communities) that directly affect how that cell functions the symptoms and disease states that can, and do arise from this type of infection is kind of scary really. These are also the same cells that gobble up cancer cells, and keep tumors from growing.
These pathogens can be destroyed now, so I'm not going to wait around for decade long medical trials. People should also know that I have nothing to do with the medical field whatsoever, other than being tossed around by it :-) so I'm not giving anyone medical advise I just think people have the right to know there are other options out there now, and that people are slowly curing their chronic disease with the Marshall Protocol.
I'm sort of new to all this myself, and I've mainly been reading about the Marshall Protocol because the person that created it (Trevor Marshall) had Sarcoidosis himself, and successfully treated his disease with the Protocol, but they found that people with a wide variety of diagnoses have had improvement on the Protocol as well. The ones that always come to my mind are people Dx'd with Addison's, Hashimoto's, Chronic Lyme, Fibromyalgia, Sjögrens, CFS/ME, Lupus, RA, and MS. Diseases most physicians would never link together as having a common cause, but like you were saying when you really get down to the brass tax we all share the same symptoms more or less.
Some links are org sites so I can't post them here, and in the past I've sent members links in PM's, but I think what I'll do from now on is just keep the links in my journal on my profile page so if anyone wants to research it further everyone can get the links off of my profile page.
In a final note one of the researchers that has investigated the role of Mycoplasma (pseudonym for L-form, Cell Wall Deficient) bacteria in chronic disease is a now an expert right here on the MedHelp Autoimmune forum, Prof Garth Nicolson, I recommend to anyone more interested in Mycoplasma, or have questions about their disease to direct questions his way, he's an expert, and is a medical doctor that taught medical school for over 25 years, and knows a lot about all this stuff.
I thank you again for all the information. I did see where Dr. Nicolson was the expert on the forum. However, I also noticed that there are many people asking questions and not very many answers. That may well be because I am new as well and just don't know where to find them, but I also figured that he is only one man and has a life and job beyond this forum to contend with so I didn't think it would be possible to gain an audience with him. Of course, I didn't know about the Protocol (much less his knowledge of it) at that time. If I send him a post will he even see it? I will check out the links on your profile page, thanks again.
One of my wife's conditions that I did not mention was sleep Apnea. I mention it here because as I have started thinking about what you have told me I have come up with a possible connection here. My wife started developing her SOB problem (along with all the other ones) about two weeks after she started using her CPAP machine. Could she have been infected with a bacteria, Mycoplasma, via this route or could it have come from the bacterial load she was born with that has just now gone active? Of course, I have not yet investigated this Protocol myself, so I am not versed in it as well as you are, so feel free to correct me or apply what you know to my theory to see if it has any merit. We are on our way now to her follow-up visit with the Rheumatologist to see where all her test results will take us so I will come back and look for your response after that. BTW, I don't think it would be prudent to bring any of this up to her physicians at this point. When do you think I should and in what format?
My mother has Sjogen's Syndrome and she's taking natural formulas that target mycoplasma and viruses. Just like lyme patients, she's having herxing symptoms from these formulas... which, of course is an indication that they are killing off something in her body that her body doesn't want. Although I have CFS, we are both on the same treatment ! And both of our physicians support our treatment. In fact, it was my Endocrinologist and a Naturopathic physician who recommended antibiotic therapy for me. About a year ago, I switched from antibiotics to natural formulas and haven't switched back because I'm having success with the natural formulas as well. Treatment is long and can make you feel worse.... but it deals with the cause of your disease and in my case, I'm seeing signs of healing.
I also have a book on Sjogren's and they discuss the suspected causes, which include bacteria and viruses. It is so unfortunate that many physicians do not care anymore about the cause, but would rather treat the symptoms instead.
If you would like more information, I could send it to you.
Prof Nicolson is part time on the forum I believe, but if anyone wants to contact him when he's not on MedHelp they can send him an email. Just to clarify also is that Prof Nicolson, and the Marshall Protocol aren't interrelated, but if you have general questions about an illness, other treatments, or about Mycoplasma in general he is a good source of information, and it's a good thing that a doctor that knows about mycoplasma and their role in chronic disease is here on MedHelp, most physicians don't even acknowledge it or seem to care about it, mainly because they were never taught to because their role in chronic diseases just became more studied in the last few years or so. There has been evidence for decades, but it's just starting to be taken more seriously recently.
Questions related to the Marshall Protocol (MP) can be asked on their sister site curemyth1, the full link is in my journal. But start out watching the video Amy Proal put together it's always the first link in my journal, it's a great introduction to what all of this is about. Then watch some of the other videos if you get time. I know myself reading on a computer screen I can only take it for about an hour and a half a day then I start to space out, with the videos all you have to do is listen which makes life easier.
The L-form bacteria aren't an acute infection like a virus or the normal cell walled bacteria are. It thrives by taking over phagocytes and living in the cells in communal biofilms as long as the cells can maintain them. How a person becomes chronically infected with these bacteria is a long complicated evolutionary process that isn't fully understood, and I would probably be speculating if I went into how they come to persist more or sooner in some people. But it's a complex of multiple factors, that takes a long time, and therefore can take up to five years to have full recovery on a germ killing Protocol like the Marshall Protocol. The thing about the MP also is it's not just popping abx's for a few weeks, and the patient is all better again, it's a long commitment. Mainly because people that have these huge bacterial loads of L-form, and acquired coinfections, when you turn on the immune system again the cytokine storm will actually become fatal if bacterial die off isn't done slowly, and the resulting immunopathy isn't kept within tolerance. Another point is that the abx's alone aren't enough, if right now I took a regular dose of Minocycline it probably won't do jack squat. That's because my VDR's are still to blocked, in the videos this is explained better.
Prescribing doctors that's kind of the major problem of trying to do a probe with the MP, when...is sort of a personal decision, but to have the D metabolites checked or to do a quick probe isn't really a big commitment, it's just seeing if the MP will help the patient or not. I'll add some links in my journal also about thearuputic probes, and testing the D metabolites, because those things are essential to deciding if the MP will be beneficial to a particular patient. Also I'll put links to the first two phases of the Protocol.
PlateletGal was also on the MP herself, but switched to natural formulas because she had just as much if not more immunopathy on those. So she's another excellent source if you want to drop her a PM. Whatever treatment a person choses the key is to strengthen the immune system, and avoid anything that suppresses it, steroid medications, a 25 D level above 20, and so on...because it's really your immune system that kills the bugs the abx's or formulas just come in by weakening the bugs through interrupting their RNA transcription, and allowing the immune system to start to deal with them more effectively, but the more the immune system is still suppressed the less bacteria will be killed.
I thank both of you for all your help and advice. As I mentioned earlier today, my wife and I went to her post-lab follow-up with her Rheumatologist today. His verdict is Lupus. Based on the autoimmune Ab results and other standard lab results he said that she has no organ involvement and that her case is of the "mild" variety (my words not his). He said that as of right now, we should be looking to just treat her current symptoms that are making her miserable ... mainly the fever, fatigue and inflammation of the joints (in her case, the most severe are the wrists). He is taking her off of the Ibuprofen and weaning her onto the 5 mg Prednisone dose ... not to exceed 10 mg/day. She is to start with 1/2 pill and if that has not improved her condition by 12 hours take another , adding another 1/2 every 12 hours up to two pills a day. He also wants to start her on Plaquenil, which he states takes up to 6 months to start taking any affect. I'm not too comfortable with this one but I have to learn more about it first. In the mean time he is referring her to another Rheumatologist that specializes in Lupus down in Charleston, SC. We live near Columbia. He said that given his belief that her actual involvement with Lupus is minor, there's a good possibility that he may take her off of the Plaquenil and just leave her on the low dose Prednisone if it seems to be working for her. We are really hoping that it does since we are really concerned about the constant use of Ibuprofen. Our current Rheumatologist is 56 and he was explaining to us on our first visit that one of the big problems in our area is that there are only about 10-15 Rheumatologists in our state and immediate surrounding area. And they are all getting up in age and either are near retirement or want to. He said that the field has not been garnering a lot of interest in the medical schools and it may eventually be taken over by the lesser qualified fields such as Internal Medicine. Not a pleasant thought but a sobering reality.
Now, you mentioned Natural remedies. The only one I have read about is one that was mentioned here and that is the Hydrangea Root. I know nothing about it although I did Google it and found that it can be purchased online as a liquid extract or a "solution". I stopped into a local GNC her in Columbia and asked if they had any. The clerk said he had heard of it but they didn't carry it. He didn't know what it was for either. I still need to find out if, whatever form it comes in commercially, will it deliver the desirable compound mentioned in the scientific journal article that it was posted in. Halofuginone. Apparently, the current experimentation has shown that this compound "should" work across an array of autoimmune disorders. Any thoughts? If there are others, do you know of any that wound help with Lupus?
Also, PlateletGal, it sounds like the natural formulas your mother is currently trying sounds like it is worth my looking into as well. Corvin has referenced me some videos that I have to watch to learn how this whole process works. I will also be looking up more about it on my own as well. I also want to find out more about the Naturopathic physician you mentioned. Are they easy to find? I imagine that contacting one of them would be desirable before attempting to begin any of these treatments, right?
I have not has as much time to spend on the computer (for investigation, etc) since I have been taking care of my wife during the day and staying up with her at night during her regular crises', so "we" have not been getting too much sleep. She has been getting a little better over the last couple of days and actually slept pretty much most of last night. I was so happy for her as she was really wearing thin. Despite all though, she still wanted to go to work and I had to get demanding with her that she was not going to make it. Her SOB is still pretty bad but it too has improved a little over the last two days. I hope the prednisone helps out. I told her that if the Pred seems to help and she is better by Sunday maybe she can give it a shot on Monday. We'll see.
I'm going to my local clinic to see if I can get the MP started, the MP would have to be Rx'd because your taking prescription medication with the MP. Ideally would be to have the Rheumatologist prescribe the MP if she chose to try it. Unfortunately they usually don't go for it, then your next option is to request a list of physicians in your area, I have the link in my journal, or try a local GP first also if the nearest requested one is fairly far away. So yeah it's kind of a hassle to get it prescribed, but I know I'll get it one way or another even if I have to drive to the next state. I can't say too much about the formulas because I don't know much about them, but PlateletGal can send you some more info on those she's a lot more familiar with them.
I hope everything works out for your wife, and yourself whatever you decide, and don't worry about trying to figure out all this L-form mumbo jumbo to fast it's a lot of information to go through. Luckily I won't have to wean from Prednisone, I don't have any endocrine problems, no coinfections, my 25D I'm not sure what it is yet, I've already asked to have it checked once, and they said yeah okay, and then I came back to ask what it said, and they said "I don't see where we checked your D level", (doctors they'll drive ya nuts sometimes).
So I just have to get the Rx's, and order me up some albino shades, and # 300 sun block, and I'll be good to go. :-) ~Corvin
I was on the Marshall Protocol myself and it was helping and then I discovered some natural formulas that worked just as well. My mother is having success with a formula that targets viral infections. Anyhow, there are some great natural formulas as well as antibiotic therapy. I will zip you some links tomorrow with the information.
The treatment is virtually the same treatment as treating lyme disease. It is a pathogen killing treatment and so you feel worse due to the herxing symptoms. Many physicians are not yet taught about this and are not taught about mycoplasma infections (excluding one) in medical school.... so this information will probably be dismissed by them. However, if you google, "Roadback Foundation", you can easily find testimonials from people with various syndromes and autoimmune diseases who have had success with these therapies. Your wife should consider working with a Naturopathic physician if she plans this sort of treatment. If she plans on doing the MP, drugs such as Plaquenil and Prednisone are contraindicated.
At least you know that your wife has options (my favorite word). It angers me that rheumatologists do not discuss these options with their patients. It seems like autoimmune patients and chronically ill patients are just prescribed painkillers and/or other medications to treat the symptoms (which hardly work in most cases), rather than treat the disease.
Corvin, I do wish you all the best success and please keep us informed as to how it is going. Like PlateletGal said, at least we have options and that represents hope in my book.
PlateletGal, I am definitely interested in looking into the natural route that you are speaking about. Please do pass along what you can to get me started. In the meantime I will look into the Roadback Foundation as you suggested.
Thank you both again.
Talk to you soon.