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Great, I found this article which described how to treat GWI. This tells us we are on right track.
Read on: http://www.all-natural.com/part-6ab.html
Here are some highlights on treatments they used:
[font=”sans-serif, helvetica, Times New Roman, Times”]“In an attempt to treat the illness, the Nicolsons tried several drugs on themselves and their stepdaughter. ONLY DOXYCYCLINE (or tetracycline) had any effect. All three recovered.
[ED. NOTE: They noted in their experiments that penicillin exacerbated the disease!]
The Nicolsons' stepdaughter's roommate during the Gulf War – – an officer in the 101st Airborne Division, in charge of a nuclear biological, chemical (NBC) unit – – also became ill with GWI. Both girls received cycles of doxycycline, and both are now fully recovered and are attending college in San Diego.”[/font][font=”sans-serif, helvetica, Times New Roman, Times”]“The Nicolsons have said: Since the diagnosis may take some time, it may be of advantage to try a six-week cycle of doxycycline when the symptoms arise. If the disease is present, one will feel significantly better within 1-2 weeks of taking doxycycline, and you can avoid a potentially disastrous health situation. The doxycycline treatment is not harmful in any way. At the dose levels recommended, it should not cause any problems, and there are few reported complications with this antibiotic.”
[/font][font=”sans-serif, helvetica, Times New Roman, Times”][/font][font=”sans-serif, helvetica, Times New Roman, Times”]“We have found that two to four courses of the antibiotic doxycycline (2×100 caps/day [a.m. and p.m.] for a few days to a week, then 1×100 mg/day for five to six weeks per course) work best. (Severely ill persons may need to repeat the course five to six times).
If you can't tolerate 200 mg. then use 100 mg/day. For people who can't tolerate or are allergic to tetracycline (i.e. doxycycline), substitute ciprofloxacin (1000-1500 mg./day) or Zitromax (azithromycin – 500 mg/day). If a person is suffering from Multiple Chemical Sensitivity Syndrome, ciprofloxacin can be substituted for doxycycline.”[/font]
[font=”sans-serif, helvetica, Times New Roman, Times”]“We also recommend that patients who also have bacterial infections should take a two-week course of broad spectrum antibiotic (such as Augmentin, 3×500 mg. per day) between their courses of doxycycline. This will suppress the bacteria infections that often accompany the illness. “
[/font]Hi Jenn,
I don't know if this will make you feel better or worse, but IMO, if your children are genetically predisposed to AI diseases, there is nothing you can do to prevent their POSSIBLE development of them, unless you keep them in a bubble all their life. Think about it, half of the population has mycoplasma; I assume that includes the people your children go to school with, play with, the parents of the children they interact with, teachers, and as they grow older, work with. It would be impossible to determine who or how many people transmit mycoplasmas, viruses or other agents to your children, therefore impossible to determine who is responsible for their development of disease (again, possible development).
I also think your are being too hard on yourself for thinking you caused your own illness. There are so many variables that are involved in these diseases, and stress is only one of them. Yes, it lowers our immune response, but these mycoplasmas are so good at hiding inside of cells, forming biofilms around themselves, and hibernating for who knows how long, that I would be surprised at someone with a genetic disposition who didn't eventually develop some symptoms. Like John said, just because some people who test positive for mycoplasma aren't sick now doesn't mean that they won't be later on; it's possible they just haven't experienced anything that would trigger it yet. It brings to mind some of the “side effects” of certain antibiotics, like joint or muscle pain in otherwise normally healthy people. They may have been given an antibiotic for an ear infection, strep, whatever, but they end up experiencing symptoms of arthritis. Is it just a side effect, or is it a herx response to unknown microbes that have been hanging around dormant?
We can't get thru this life without stress, and these buggers can just sit back and bide their time until their host is weakened by something. That something could be anything, an injury, a cold or flu, surgery or emotional stress. I know you've been thru a lot recently, but give yourself some credit for doing so well on AP. Not only did you research non-traditional options, which has saved you from developing other disease from meds down the line, but you've kept a positive attitude about AP. I believe the door swings both ways; stress can make us sicker, but a positive attitude can help to make us better.
So give yourself a pat on the back, and try not to worry about things that are out of your control, like mycoplasma transmission. At least you're armed with the knowledge of how to treat it, so that if your children do develop an AI dx you can minimize their suffering. As Martha Stewart says, that's a good thing!
linda
…if your children are genetically predisposed to AI diseases…
But my point is that there may be no such thing as auto-immune diseases. I argue too, that there are precious few of us that are genetically disposed to catching these diseases.
Lida Mattman showed that attacking conventional bacteria with cell wall attacking antibiotics (e.g., penicillin) causes them to change to an L-form or Cell Wall Deficient form that can survive such an attack, but which them must parasitize a host cell.
Marshall shows that supplementing with dietary D renders the first line of immunity defenseless.
We have been doing both of these things for about 3 generations now. If these two researchers are correct then it is no small wonder that the world is succumbing to so called AI diseases. What baby comes into this world now without huge dosing with dietary D in the form of prenatal & neonatal vitamins and in their formula?
I don't know if Marshall and Mattman are right, I can't know with my background. But it sounds very plausible and satisfying to me.
Lida Mattman showed that attacking conventional bacteria with cell wall attacking antibiotics (e.g., penicillin) causes them to change to an L-form or Cell Wall Deficient form that can survive such an attack, but which them must parasitize a host cell.
I think this is exactly what happened to me after years of treatment by dermatologists who don't have a clue about the ABx they use and the far reaching affects for good and for ill. Very frustrating to look back on, but I thought I had the best medicine had to offer at the time.
Hi John,
It's an interesting theory, I have not heard about it but I will research it. But even if it's true, it doesn't explain how people from hundreds or thousands of years ago developed arthritis, before the advent of abx. Wouldn't there need to be some other substance or mechanism that would cause the bacteria to become cell wall deficient?
linda
Linda,
I agree that it doesn't explain arthritis before antibiotics. But it does explain, possibly, why there is such an insane explosion of idiopathic and AI type diseases in the last 60 years. Scleroderma used to be extremely rare. Asthma didn't occur in such huge volumes. There are other explanations and maybe one of these will be better than D and abx. No one knows yet. But if environmental pollution is one such cause then how much more persuasive would such pollution be if it turned out to be a vitamin that we ingest in great quantities to cure all that ails us and which is said to put hair on billiard balls. I am especially suspicious of vitamins which turn out to be powerful hormones, seco-steroids, and which we can manufacture ourselves with a few minutes in the sun.
john
I love it…hair on billiard balls!:dude:
You know how I feel about steroids, and I've never been much for supplements, preferring to get my necessary nutrition naturally if possible. Anything that claims to cure several unrelated diseases always makes me suspicious. I have to say your success with MP is compelling evidence for the Vit. D theory.
linda
Hi Jenn,
I too believe that stress is a biggie. I wonder if we do not harbour many lurking “bugs” who only really get us down when our immune system is weakened. That said, you DID NOT “give this to yourself.” Being under acute stress is not something you wanted to do, you kept things together for your kids, you searched for answers. Give yourself credit for doing a good job under fire. Life happens. Stress happens.
I think Maz is right – that being unduly scared about transmission to your kids could make you upset ( not helpful) It oould also make your kids tense ( they sense these things – they're uncanny.) This is also not helpful.
What is helpful? The good diet you provide, the AP protocol you follow, the positive environment you surround your kids with. You are doing all you can while critically evaluating new information. This has to be good enough, Jenn. Don't upset the apple cart by stressing over this. How well I know the intensity of our wish to protect our kids – it's powerful – and it's a hard thing to realize that we can only do our best. You are!
There is no doubt in my mind that infection is behind your illness. The genetic connection is simply the reason your illness went to your joints instead of somewhere else in your body. Genetics don't cause illness, they just determine how your body will handle disease.
Jenn I loved this post from Susan on another thread and thought it worth repeating part of it here. May I also add some other thoughts of my own.
My own AP Doc has advised meditation or prayer (whatever suits each individual) to provide stress relief and to focus the mind on healing – as an important part of a holistic approach and I agree with her. It focuses the mind and heart towards wellness and away from fear. I noticed also before that you mentioned 'gambling' your health on AP. For me, the gamble (and one that I personally would not put a cent on) is using conventional heavy hitting meds.
For those who are new or who need some reassurance/inspiration, I would so advise reading some of the testimonials that can be accessed from the home page of this site. It is a fact that most people who actively use the Board are newish or are still tweaking their treatment in some way and seek support. Many people who were once very active posters are now pretty pain/symptom free. Having their lives back, they are out living them as they deserve to be. So reading the testimonials is a good way to see who has passed this way before you and to take heart from their journies. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I know it's simplistic, but one reason we are seeing more of these diseases is that people are now living long enough to get them. The average life span has increased dramatically in the last 100 years. Also, our diagnostic techniques have advanced, so many more people are getting the proper diagnosis. It is my personal opinion that people go to doctors more than they used to.
I got a reply from Dr. N who is an expert in infectious disease like mycoplasma. Here is what he wrote:
“Testing for mycoplasma infections is difficult and depends on the shedding
of the pathogen into the blood at the time of testing. If you blood is
negative, even if your tissue levels are high, it is unlikely that you are
contagious. Patients on antibiotics are unlikely to be contagious since
this suppresses the blood levels of pathogen. Also, testing while on or
even after antibiotics is questionable, since the blood levels are usually
low under these circumstances.These infections are not very contagious and spread very slowly to family
members and sometimes in the workplace/school. They can, however, spread
to family members, as we documented in returning veterans of Gulf War I
who had these infections.”Thanks Marg and Lynnie and others- for the supportive words.
I'm with that group who thinks a lowered immune system allows the infection to get the upper hand. But I do like the discussion that tweaks that by saying every body's body is different. So, my kids, while exposed to my infection- have a different diet, different stress levels, different genetics to some degree… so they may never develop this disease. OR they may develop some other form of it and by then, they may actually have a cure.
So, knowing that they're going to be exposed, knowing that I was exposed for 35 years before developing a problem… I'll keep that in mind.
I am better on A.P. Like 95% better. I still have finger issues. My fingers are my worst. BUT- recently I did an experiment. My fingers were fine for a month when they acted up. I had had a coke the day before…. Yes. A coke.:P So, I waited until the pain passed.. it took two days. Then I had another coke. JUST TO SEE if I actually had that much power to cause pain in my joints by having a simple coke. Sure enough, my hands hurt like heck the next day. My body does not like sugar. I think that's so insane! Why do you suppose the sugar makes my hands hurt?
Anyway, I'm going to work on including all the additional data about my kid's having a healthy diet, lots of exercise and stronger immune systems than I was working with when I developed this disease. Because thinking that I “developed” it rather than “catching” it- makes more sense. I already harbored it like so many others do who don't develop the diseases.
Jenn
Hi JB,
Thanks for sharing your response from Dr N. What he is saying about mycoplasma is exactly what has been said and is being discovered in very recent studies in Lyme Disease.
One such study published in early March, announced that that after the standard treatment of antibiotics was given to mice who tested seropositive (blood serum positive) for Lyme at the start of the study, no longer tested blood serum positive after finishing their antibiotic treatment. However, the spirochetes were still found inhabiting their collagen tissues.
http://aac.asm.org/cgi/content/abstract/AAC.01050-07v1
Studies such as this one provides further evidence for the rationale to use long-term low dose antibiotic treatment! 🙂 Great sleuthing, JB, and a comfort to us all to hear confirmation from Dr N that this treatment prevents further transmission to others.
Peace, Maz
It is my personal opinion that people are now seeking treatment for things like arthritis when years ago it may have been accepted as normal aging and people didn't go to the doctor for their aches and pains.
I don't know whether this should make me laugh or cry. It definitely reminds me of the TV commercials where people think RA is some kind of “ache” that makes you come in early from gardening to take an aspirin.
Joe, what happened to me could NEVER have been mistaken for aging aches and pains. The nuclear war that takes place in spots on my body isn't something that you just ignore or think of as aging! My very first thought was that I had some type of horrific flesh eating infection except there was no sign of a bite or skin break. I thought – parasite immediately. I also thought this was what made people think of voo-doo dolls, because it feels like someone is hitting me or cracking me hard with a crow-bar, and I am constantly being stalked!
To have it “dismissed” as just part of getting old is kind of frustrating and a bit insulting – like I just need to “buck up” and take it like a man or something. I know you don't mean it that way, but it kind of sounds like that. I know that in times past people might not have had access to doctors or have been unable to seek help, but no sane person would think it was “normal” and to be expected.
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