Keep in mind that this is a physiological problem and, therefore, will require some strict dietary changes to overcome (inside out). Also, start working on clearing up any other health issues you may have, as there are specific scents that certain illnesses give off. Whenever there is something wrong in the body, the body usually lets us know by way of symptoms.
For those who are making people sneeze, cough, etc., I think some people can unknowingly detect the illness, fungus, bacteria or whatever as they can come through the pores (sweating out toxins). Sometimes, unfortunately, people respond to malodor by coughing, sneezing, sniffling and are too polite to say anything. So for those who think they don't have the body odor problem, there's a chance you just might. In most cases, people don't smell themselves.
Since there are so many different illnesses out there with similar symptoms, are there any other common symptoms that everyone here shares? Dry skin? Rashes? Dry mouth? Sweaty palms/feet? Dry scalp? Hair loss? Bad breath? Brittle nails? Itchy skin? Acne? Cavities? Gingivitis?
These are just random symptoms I'm throwing out there to get the convo going. Feel free to share your own personal symptoms.
I've come to the conclusion that it is a totally involuntary thing when people "react" (cough, clear throat, etc.), not some sort of "hey you stink" nonverbal clues...I have felt the reaction myself, it is like something grips or attacks your throat, as I've said several times already here, like when you're cleaning your oven with Easy Off and all of a sudden you have to cough (Easy Off is very alkaline, and I believe the gas we give off is also very alkaline)
As far as other symptoms, when I am patming bad my skin tends to feel slimy when wet...do you know how your hands feel when you have bleach on them? That's how all my skin feels when wet...again, bleach is very alkaline, so whatever is coming out of pores is leaving a slimy residue on skin
The chance that we release odor is 0% regarding patm.
All doctors say that TMAU and BB patient’s stinks as hell but choose to be too polite to patmers? Did all the doctors around the world decide on a consensus to say that we don’t emit odor? Do we know doctors and other people’s noses better than they do?
Please stop painting our image with the wrong view. Don’t believe me? Take another visit to your doctor; go to the preacher or your lawyer. The moment you utter those words… , they’ll think you’re crazy because you don’t have odors. Then again, take a TMAU patient with you and have him ask, it doesn’t matter where and who he enquires, they’ll all agree that TMAU or BB patients do stink. So again, are saying they choose to be nasty to TMAU/BB and all foul problems but polite against patmers? The reason why patm is recognised as ORS is because of people who think like you. Now if we get a cure, we have a second job of cleaning our name from being recognized why WHO as lunatics for believing in “invisible odor”.
Btw, I agree with some of your other comments.
Indeed I share your belief that we are closer to a cure. How close? I don’t know but I’ve talked with Dr Saraf, he said that what we are observing is most probably overloaded toxins from bacteria. According to him we are categorised in one big group with varied presentation…I’m assuming he meant allergies.
So it would seem the only way to get rid of the problem is to try and kill all the bacteria involved in creating the toxins as our body cannot keep up with the excessive about of toxins.
Other people are immune to the bacteria but not to the airborne toxins which I assume to come out of our breath or bodily secretion, perspiration etc.
Dr Saraf is still working on deciphering the problem by giving ray2505 the necessary vaccines and monitoring his progress. We don’t know the permanent outcome of this on-going procedure but we hope for the best.
For me even if this experiment fails by not sustaining a permanent solution, at least there’s some understanding to this puzzling problem and its causes.
Ive been suffering with constant sore throat, I cant stand it.
Also my nose is running, iI noticed my toxic smell has increased since i quit taking that effing antipsychotics.(too much side effects).
I think we need to rename this thing with less degrading name like bacterial infection that caused you emit odorless toxic gas (whatever that means.) This allergic thing sounds too stigmatized. I agree with upper posts about immunity and inflammation. Also our bodies are heating up because we are constantly battling with bacteria, pathogens etc. I am still researching about this mystery until i do the tests done. we just need to find a right solution. I dont think diets and supplements can solve the ROOT of this problem or even Antibiotics.
This forum is kind of dream come true. Dont be ashamed even though people look at you like you have mental problems WHICH WE DONT!.
The way to clear your name from this is label is with infection and immunity problem .not with "people are reacting to me !" because we know they are reacting because of toxic air that out bodys are emitting. They arent reacting because of nothing. Its something to do with out gut, microorganisms.
People look at me really differently if I mention this condition so I rather not talk about it. It is insane how much low attention This thing is getting. Maybe because it is rare. I know its a long post but hang in there i truly believe with this forum we can shed some light to it.
Whoa...slow down a bit. We're all frustrated here and trying to find answers. Being abrasive and shooting down the theories of others is not productive. I will continue to remain positive and share any progress through my own regiment, if I feel it is beneficial to the group.
The topic of acidity/alkalinity and Candida overgrowth always results in great confusion. Your body’s typical pH reading should be 7.4 (slightly alkaline), but there are very good reasons why you need to actually make your gut more acidic to kill the Candida yeast. How does this make sense? Well, what one part of your body needs may be completely different from what another part needs. We see this in pH levels – your blood needs to be slightly alkaline, whereas your digestive system needs stomach acids to function correctly.
Maintaining the correct pH in your gut is one of the most important things you can do to reduce your Candida overgrowth. The Candida yeast likes an alkaline environment, which is often brought about by a course of antibiotics or an excessively alkaline diet. One of the aims of the Candida Diet is to restore your gut acidity to the correct levels. The right dietary changes and a course of good probiotics will do just that.
Acidity and alkalinity in your body
You may have read in various places that your body needs to be more alkaline or acidic, but the fact is that this is over-simplifying a very complicated topic. Your body’s average blood pH is generally between 7.35 and 7.45, which is slightly alkaline. However, the various organs in your body require very different pH levels to work efficiently. Your stomach, for example, needs an acidic environment to work properly, so this has the highest acidity in your body (a pH of somewhere between 2 and 4). Your colon requires a slightly acidic environment, i.e. a pH between 5.5 and 7. Even within your blood supply there is variation – blood that has circulated around your stomach has a lower pH than blood in other parts of your body.
There are diets that specifically promote alkalinity in the body. The pH Miracle diet and the Alkaline Diet are just two of these programs. They claim that an alkalizing diet will prevent fatigue, help you lose weight, increase your bone strength and even prevent cancer. However there are very few scientific studies backing up these diets, and increasing your blood pH to 7.45 or above can even be dangerous. This results in a condition known as alkalosis, with symptoms ranging from hand tremors to full muscle spasms. What really matters for Candida sufferers though, is that an alkaline environment in your intestines is exactly what your Candida overgrowth needs.
Why does Candida overgrowth require an alkaline environment?
Candida overgrowth relies on increased alkalinity in your intestines. It needs neutral or alkaline conditions to switch to its fungal form. This is why acid-producing probiotics like acidophilus are so effective at slowing and even reversing the overgrowth, and why caprylic acid is an effective antifungal. Your digestive system has evolved with a naturally acidic environment that protects us against pathogens like Candida, so when you begin your Candida treatment plan you need to maintain that acidity.
Candida not only prefer an alkaline (or less acidic) environment; it actually acts to further reduce the acidity of your intestines. One of Candida’s byproducts is ammonia, an alkaline gas that forms when the Candida Albicans yeast ferments sugar in your intestine. Ammonia increases the alkalinity of your digestive tract, and has even been found to promote the growth of other yeasts. A 2011 study (see here) found that “under acidic conditions, this species can raise the pH from 4 to greater than 7 in less than 12 hours”. The same study showed that by alkalizing its environment, Candida triggers a switch to its pathogenic, hyphal form, which is the form that causes Leaky Gut Syndrome.
The acidic environment in your stomach and intestines is hugely important – its your first line of defense against pathogens that enter your digestive system. A 2001 study (click here to read) found that “both capric and lauric acids are active in killing Candida Albicans and may therefore be useful for treatment of infections caused by that pathogen”. Additionally, one of the most popular and effective antifungals for Candida overgrowth is actually caprylic acid. Studies have shown that coconut oil, which contains caprylic acid and lauric acid, is another effective antifungal.
This leads us on to another very important part of your Candida treatment: probiotics. One of the reasons that probiotics are so effective in treating Candida is that they produce small amounts of lactic and acetic acid. This helps to rebalance the pH in your intestine and restore the acidity that is needed to curb the Candida overgrowth. In fact one of the most common reasons that a Candida overgrowth happens is that a course of antibiotics has killed the acid-producing bacteria in your stomach, thus making the environment too alkaline and allowing the Candida to thrive.
How does your gut become too alkaline?
There are a number of reason for your gut becoming too alkaline. Perhaps the major cause of Candida overgrowth is antibiotics, which are sadly over-prescribed these days. When the antibiotics kill the good bacteria in your gut, they’re not just reducing competition for the Candida yeast. They’re actually also destroying one of your sources of stomach acid. These friendly bacteria produce small amounts of lactic acid and acetic acid that help to maintain your stomach acidity. When they are killed by the antibiotics, your gut becomes less acidic, more alkaline, and a perfect environment for Candida to grow and take over your gut.
Diet can be another contributory factor. Most fruits are very alkaline, so eating too much of these is one route to excess alkalinity in the stomach. There is another reason to be careful with your fruit intake of course – fruits contain large amounts of sugar that feed your Candida overgrowth.
There is one more reason for your reduced gut acidity that’s not the result of your diet or anything else that you’ve done. Its a fact that stomach acidity actually declines with age, so as we get older we become more susceptible to Candida overgrowth. One study showed that stomach acid secretion slowed from almost 180 mg/hr in 11-20 year-olds, all the way down to 50 mg/hr in 61-70 year-olds. That’s a drop of almost 70%.
How can you restore your gut acidity?
One of the most obvious things you can do to maintain your gut acidity is only take antibiotics if you absolutely have to. Of course there are times when you do need antibiotics – they can often be life-saving – but make sure that your doctor is not over-prescribing and don’t be afraid to get a second opinion. If you do need to go on a course of antibiotics, taking probiotic supplements at the same time will help you maintain the balance of your gut flora and prevent your stomach from becoming too alkaline.
In fact taking probiotics is one of the best ways to restore your normal gut acidity. The ‘good’ bacteria in probiotics secrete small quantities of lactic acid and acetic acid, which help to get the pH in your stomach and intestines down to normal levels.
There are vitamins that can help maintain a balanced gut pH too. Vitamin C is otherwise known as ascorbic acid, and is also an excellent supplement for boosting your adrenal glands and immune system. You can take vitamin C in quite large quantities and its a very useful complement to a Candida treatment plan. Vitamin B (or more specifically B6 and B12) helps with the production of hydrochloric acid in the gut. A general B-complex vitamin will do the job.
Diet is an incredibly important part of any Candida treatment plan, and you should make probiotic foods like kefir and yogurt a part of your daily routine. The good bacteria found in these probiotic foods secrete lactic acid and acetic acid into your gut, increasing the acidity. If you’re worried about the bacteria making it through your digestive system, don’t be – a 2006 study (click here to read) found that the live bacteria in yogurt do indeed make it all the way through!
Lastly, there are a few things you need to avoid. We’ve already mentioned antibiotics, but you should also steer clear off things like antacids and acid blockers. Anything that reduces your gut acidity can help the Candida yeast to flourish. If you’re taking alkaline waters it is also recommended that you stop until you have beaten your Candida overgrowth.
For a more comprehensive look at how pH affects Candida overgrowth, take a look at my Ultimate Candida Diet treatment plan.
Agree with you there ribeyes, this is not really a disease on our part because we are not dying from this. If the whole world were not allergic to us, whatever we have, we wouldn’t care because we aren’t getting sick. Unfortunately, the whole world is on the other side and we are the minority. If only one person was allergic to us, of course I wouldn’t care. …let him cough & choke to death for all I care.
Funny thing, there are a few people who are allergic to almost everyone else, they are taken special care of and have to spend most their time indoors in a special room. The rest of the world can enjoy themselves without knowing these minorities exist. These minorities have to hide themselves and the rest of the world can walk freely and enjoy themselves. Certainly there is nothing wrong with the whole world just because these minorities are getting sick. On our part, it’s the opposite, they are getting sick but we are driven into isolation. And it’s all because we are the minority. Regrettably we have to adjust to what the majority dictates. How sad for us. Sometimes it feels unfair but that’s how it is for us patmers!
Doesn’t it sometimes make ya want walk out there and say to the world,cough your throat out and get sick and die as I don’t care coz its your problem and not mine!!! Lol…
I’ve actually tried that many times out of frustration, the problem it doesn’t work for long…
Yes, tommottommot8 I believe you. I'm monitoring ray2505 's progress. If his condition sustains then it would mean that we have to take blood test as our individual cases may be unique.
Probably we are unique in each individual case. Look at grateful2011, she's the only one that cures PATM with vegediet. Others have no effect or lessen patm only. Here's what Dr. Saraf said
"At allergy clinic we take pride in providing individualized care. I understand frustration of patients who are suffering from symptom similar to you, however I think all of them have been lumped in one single group despite having varied presentation Every patient has unique history and presentation and that sometime help in providing appropriate care for them. I can not discuss legally about any particular case but as for yourvquestion about vaccines and immunity, bacterial toxins and super toxins has been implicated in allergies"
If you read about the two bacteria strains which ray2505 got his vaccine for, it’s funny on how and when they are implemented on test experiment which makes a big difference in how they work.
We could be immune-deficient to a number of different strains on individual cases. I guess only an IgG blood test can tell.
Btw, someone took the 13 serotype; I’d be interested to know the outcome of that since that’s the exact vaccine that was taken despite the problem he/she took other vaccines as well within the same period.
I finally today received a dose of Prevenar 13 (PCV13), the same type ray2502 took initially, now I will wait for the outcome, can't wait to see positive changes in the coming weeks (hopefully). Will keep you guys posted off course. I did not take any blood tests prior to this vaccine and do intend to take the hib/menC vaccine in 4-5 weeks time then followed by PPV23 4 weeks after the hib/menC shot.
When finding a place to get these vaccines I did have to pursued some of them to give me them as they do not give PCV13 and hib/menC to adults, only infants. none of the places had given an adult (I am 30 years old) these vaccines before and did not particulary understand why I am getting them. However because I have to take them privately (paying a clinic out of my own pocket) they agreed to give it. This first vaccine cost a lot and so is the next one, but I'm willing to do this to possibly get my life back.
I've been following this site off & on for a couple of years trying to come to terms with how to deal with this condition, which doctors say doesn't exist. As with most others I've had times where things have improved only to have the condition return. I'm grateful that people are sharing their recent trials and successes. The one thing I'm having difficulty giving up is coffee, but I think it is a trigger. Anyone have similar experience?
StayStrongForever – thanks for doing that. I know it cost you some money but at least someone is picking up on ray2505’s path. If it works for you then there’s a high possibility that it should work for others too.
Please don’t eat any junk food as I have done. I believe eating sugar/dairy food products will ruin the outcome.
The second vaccine shot hasn’t been taken by anyone except ray2505 so I’d be curious when you do.
As for me, I’m trying hard to find a way to convince my doctor to do a IgG blood test on me.
One possiblity of your trigger with coffee is that you perceive people having more reactions to you but in reality its because coffee has a strong smell and your breath is carried out further along with patm when you speak. That's the answer that I received from my allergist....Hope this helps....
Honestly, I wasn’t keeping track of what was going on. I use to think that ray2505 took only the igG test. From looking at this medical report, it looks like he took an immunoglobulin test, which is for all of the five subclasses of antibodies.
I think this is the way to go. It will capture all deficiency. Immunoglobulin A (IgA), which is found in high concentrations in the mucous membranes, particularly those lining the respiratory passages and gastrointestinal tract, as well as in saliva and tears. I am curious to know my IgA level.
So I’m optimistic about all it. This is where I’m heading. I have a feeling we are slightly different, meaning we may be immunity deficient to different variants so ray2505 was right… we should have taken the “immunoglobulin blood test” first.
If this doesn’t work then it might lead to a conclusion that perhaps, viruses, germs and candida is most likely not even in the equation. However, ray2505’s results prove that at least microbial entities are involved regardless whether his experiences will last or not. This is because, patm responding to vaccination implicates that there is some form of pathogenic condition associated.
Dr Saraf must have studied so many cases to be aware of these details. I’m looking around within my area to find an allergist. Haven’t found one yet… there is a national body of some kind but it’s too far from where I am.
If eventually Dr Saraf finds a permanent solution that works for everybody… I’m just gonna fly over and get it over with. For the meantime, I’m going to work on getting an Immunoglobulin Blood test.
Anybody knows the usually fee for taking such tests? Is it expensive?
after reading so much about immunity problems... it scares me. It could be any of them. Meaning... there's some related to genetics and chronic too. Sometimes it won't show up until something triggers it...
Thanks, Ray, and thank you for sharing your recovery. I'm seeing my internist Monday, and will ask him to do the IgG blood test. I've never spoken to him about PATM, so wish me luck. I'll share the results, if he consents to do the testing. If not, I'll explore other routes. Fortunately I'm off for the summer and have more free time for appointments. Thanks to all who have been sharing their results. I'm more hopeful that a solution is possible.
Don’t try to interpret people’s feeling by just looking at their faces. It looks like you are new to patm. Ask the people with the disgust looks! You have to build the guts to be bold and ask. Your doctor/GP won’t like to you…ask him! If you have breath that smells like ****, your doctor/GP will tell you exactly that. Start asking questions and connecting the dots. There are diseases where patient’s breath stinks and medical professionals have no problem telling their patients that. It against their oath to lie.
Doctors have used instruments to test for breath/body odor and tried on some of you…look up the forum posts in the past and still nothing, coz there is nothing! Some of these instruments are so accurate that they can tell concentration level that probably dogs will find it hard to detect, and still find nothing. Are you going to tell doctors that their instruments are wrong and they don’t know their own noses but you know theirs better? No one can smell you… you can’t even smell yourself… but what ground do you keep on referring to the invisible odor?
On the other hand, BB (halitosis), doctors don’t even ask patients. Doctors don’t do test to verify coz it’s obvious. Their friends will tell them, no need to ask. Doctors even say something like, “their breath smells like faeces because …”, no cares about how they feel. If it’s the truth they’ll say it. Did you think anyone out there care about how we feel that they’ll refuse to tell us.
Here’s an experiment, don’t brush your teeth for a week and get out there and socialize. You’ll see, people will say it in front of your face. And if you go and see the doctor, he’ll try to help you, no question asked. Some will even tease you about it.
Regarding patm, yes they do look at you in a strange manner because you make them sick. If you ask them, they normal say you are hot, they can’t breathe, and cause them to feel nauseate or really sick in a way. They need air, is what they usually say. Good option, a family member or a very close friend will tell you this.
I had a doctor who gave me that evil glare and I asked him the same thing and he described the very same thing I describe above. Sometimes they don’t even recognise their own somehow evil looking expression.
You have to try and ask, not just one person. Try as many as you can. If you don’t try to do so, you’ll continue with that false belief for another decade or so and will ruin your life. You will continue to have “Odor Reference Syndrome” as they refer to this non-existing condition. Why do you think ORS was diagnosed for patients like you? It’s because they couldn’t detect with their own nose what you are insisting for them to do so.
Btw, if you’re breath stinks, or have body odor. That has nothing to do with patm and it’s a different coexisting problem. But a simply advice, take a show or brush your teeth probably. Once you get over it, patm will still exist because it’s a different problem.
I have never had BB or body odor so I never worry about it.
They look at you with disgust or maybe its with a look of confusion. Why? Because people do not understand and what they don't understand they are usually afraid of. It's human nature. All they know is that when their around you their allergies start to flare up or cough, sneeze but it's not because you smell. Hope this helps.....
guys i have been dealing with this issue as well,my family keeps sneezing, clearing their throats. i really dont know if theres an odor or not because i cant smell anything i asked my family and they dont smell anything. i have tried everything to get rid of this curse. i was diagnose with GERD, H pilory.and i have really bad post nasal dripping. it lead me to think that the post nasal dripping was the culprit. but after trying everything to stopped it, i was able to, but no positive results came with this. i still made ppl around me grabbed their nose sneeze like crazy and cough as well. im sure this issue is a gut related and with everything that ray2502 had bring to this group i now know its a bacterial or a fungus infection. i would like to take the vaccine but im going to try something else first. if this bacteria is feeding of sugars,junk food, mucus etc. im willing to fast and see if i can starve and hopefully kill the culprit. in my many research for a cure i came across with a book that change my life. its called the mucusless diet and healing system. u guys should give it a read. google it and u guys can download it for free. it has lots of great info about illness and what causes them. i will start my fast next monday i will keep u guys on the loop. and PLEASE PLEASE. dont give up we will find a way out of this. i stayed up last nite reading all about this forum i recently found it. great job guys. keep the positivity. peace and love XOXOXO
Ikarigera – your idea is good. However, this is something you might want to know prior. I was on a strict diet before for something entirely different. And when I mean diet, I mean it left me with skin and bone afterwards. PATM was had nothing to do with it so was never in my mind.
But the rewarding thing is that I noticed patm disappeared after several weeks into the diet. The diet had no exclusion of anything. Dairy, gluten and sugar where among them.
The bad side is as soon as I got out of the program, patm returned. Because such rigorous diet can never be practical in a normal condition as its painful makes it a very hard way of trying to tackle patm.
Hope you succeed in your trial though, after all I didn’t eliminate anything from my diet during that time, perhaps you might find success with the extra restriction.
@Ikarigera – I’ve taken a quick peek at the author’s background. I was surprised… he passed away in 1922. Modern science has changed dramatically ever since. For example this guy didn’t know what white blood cells were. The cell theory is one of the fundamentals of modern biology, without it, people would be talking trash about life itself.
Plus, this guy had no degree in medicine even though he was brilliant in other areas in science (Design) which has nothing to do with biology. In his own area of design, he would have some difficulty understanding undergrad materials of today because science has been revolutionized so much. Design students nowadays would probably be jobless without understanding how to use computers. In contrast, the most powerful super-computer in his days, which he had no access to, is dwarfed by todays cheapest portable calculator.
We all studied fundamental science in high-school which included cellular components and the DNA itself. In his time, the DNA had NOT been discovered… even the smartest people in his time had some general idea of what the cell looks like… had no idea how it function.
The bacteria and fungus that have been discussed every now and then in the forum, are mostly unicellular organisms. They are cells! What’s happening in the gut or respiratory track are cellular processes. One cannot talk about cellular processes if he doesn’t know what cells are in the first place, which are first introduced in Grade 8 in high-school.
I don’t want to freak you out but I think it’s important to always look up some background information about an article, book etc and the authors themselves. Remember that anybody can create any kind of convincing information, especially to average people, but their background will always reveal some sort of reflection into their claims. If modern doctors can’t explain PATM then it would be very very difficult for people who don’t understand elementary cell theory to come close.
Good side!... it doesn’t necessary mean his education is inadequate would simply disqualify his claim. It might just work even if his explanation or true understanding does not coincide. In fact, I have a feeling his methodology is very similar to what grateful2011 has been advocating all along.
If that’s the case then yes, it has worked for some. Perhaps adding the element of starvation etc might just be the last bit to try. Good luck!
I think you may be on the right track with this, my patm started about last year. It all started from after taking a PPI (stomach acid suppressor), I had this cough and went to a walk in clinic. The doc said it could be acid reflux or post nasal drip b/c I had history of reflux she gave me PPI. My cough did go away but after that I noticed signs of patm however at this time I didn't think I was causing people to react. It seem to come and go then near Xmas I really noticed it and discovered it was from me. This makes sense cuz I was eating lots of sweet foods and eating out a lot plus I had pizza like every weekend. Which maybe why it got to be too much for my body to handle ie. fighting against the bacteria or fungi ( yeast). I told my doc this, I even said I might have SIBO b/c of the PPI I took but they just do nothing. Which really ticks me off!! Whatever this is I am not going to give up on finding the answer and cure!!!
I also noticed before I got patm, my neck and back use to hurt really bad. I though it was my pillow which I changed out but was still having the same issues I even put a pillow btwn my legs for back support and relief eventually my neck and back pain went away. I notice whenever some people react to me their neck and shoulder start hurting and they become tired and stressed. I wonder if I had something going on at that time and was experiencing the symptoms of patm but eventually it stopped effecting me and started to effect others (externally).
Also I am going to try to convince my doc to let me do a number of blood tests. Can you guys list the many blood tests that you've had done but came back normal ie. celiac test, hpylori, tsh, urine tests, etc. I want to make sure I do tests that others haven't done however I will try to get the same test that ray2502 did.
jn4357 - yes, that is the best approach. Blood test are probably the best option of revealing anything abnormal. The only thing is most of us don't know what are the possible blood/urine test to take. There could be hundreds - I don't even know it.
Hope someone with a biology degree or at least an undergrad can shed some light on this. Otherwise we'll just have to do some reading and research.
I was just reading on the different bacteria/fungi etc that could infect us in many ways and are resistant to most drugs... its just scary. There are also autoimmune problem that are even harder to detect and sometimes show up as something else and then disappear until something triggers it.
but I think a blood test is probably the easier way to narrow it down... that is if the experts know what to look for.
My Infectious Disease doctor (yes, I went to one several times when this started) cultured-out my blood for bacteria and fungus (the blood test that takes a while to complete because the organisms have to grow on the test plate) and NOTHING. If blood-borne, the pathogen is very well hidden. That is what makes me think it is some kind of "obligate" organism that hides within other/host cells (behave like a mycoplasm).
So, I do not place much confidence in traditional blood tests (also, if it were that easy to discover, it would have been discovered by now). What I do trust is PCR testing, the type that identifies pathogens by their DNA composition and matches them to a database of pathogens. Unfortunately, I do not know of any for blood, I had it done for stool but the lab, Metametrix, does not have all pathogens in their database. For example, proteus was missing in the list of pathogens, and all the mycoplasmas (there are more missing, as well, like the bacterias that cause meningitis, etc.).
I also had hydrogen peroxide administered intravenously, but only did it a couple of times because it was expensive (over $100 each time)...the doctor said I would have had to have done it at least a dozen times to see if it would help, but I don't have that kind of money to waste if it doesn't. I think in theory it would, since hydrogen peroxide helps the body produce it's own type of chorine to kill invaders. It sounds awful but I always wish somebody really rich would get this so they could try everything and get all the expensive PCR tests for every known thing...
also, my neck and shoulders, and hip joints hurt sometimes too and I also think it is related to the pathogen that causes the patm, like some sort of inflammatory or immune-system response (like rhuematoid arthritis)
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