Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by justy, Oct 10, 2012.
Have you had the chance to measure you blood pressure while in the middle of a crisis?
I get short of breath and pounding heart with activity and attribute it to POTS. I can't tell if what I experience is the same as what you're experiencing though. Yours sounds like it may be more extreme maybe.
Hi all, i thought i had written a post last night to let you know what had happened, but it seems i forgot to hit the 'post' button and its now lost.
Casualty was not a great place to spend half a day, but it was well worth it in the end. The doctor i saw was lovely, very kind and helpful - he wasnt impressed with my GP though - he couldn't believe that if my GP was that concerned he hadnt done anyhting about it, not even write me a letter to take with me.
The upshot was the most obvious explanation - i have a borderline pneumonia again! Normally i can always feel when i have a lung infection, but this time i think i am healthy enough that my body was trying to fight it off for me - i didnt even have a cough, although my lung had started to hurt again. The doctor did an X Ray and then compared it to one i had had the year before. luckily they had one to compare it with, as he explained that i have a lot of areas of shadow on that lung and he can only tell if i have an infection by comparing them.
Started staright away on antibiotics, refused the oral steroids, and feeling better today already. I had thought i was in a terrible M.E crash, but i was probably just battling this - also dont feel anywhere near as depressed today.
Thank you all for your concern and support. I think my GP was overwhelmed by the whole gamut of my symptoms and health problems and so didnt look at the obvious (although he did listen to my chest - but the ER doctor listened much longer and in more places) I didnt tell the ER doctor that i had M.E etc, just what the presenting symptom was, and so perhaps it was easier for him to not get bogged down in all the rest.
Occams razor and all that.
Take care all, Justy xx
Justy glad to hear you're home and feeling a little better, can't knock the docs at A & E for getting a quick diagnosis for you. Take it easy now.
Glad you're home and sorted.
Hospital, especially A&E is no place for sick people.
I hope you have anough antibios to actually kick the infection and not just knock out a few of the nasties leaving the rest to make a rerun.
Have a good rest and take care.
So glad you got an answer Justy. Glad you're feeling better already.
How is BP? How are aldosterone and renin levels? Low levels of those could be causing hypovolemia and all of your problems. Ever tried florinef or desmopressin? Do you pee a lot?
what is your T4 level?
replace all deficient hormones.
just read your update.... might be worth getting tested for adrenal insufficiency with an acth stim test to check cortisol levels
Yeah, i had the acth stim test last December, and so far my GP has still not been sent the results - he said they mucst want to give them to me at the endos clinic - which they should have done within 3 months of the test - now it has been nearly a year, and my GP has written to them twice to find out whay they havent seen me again or given me the results yet. I really hope they havent lost the results, because ot was the most painful test i have ever had done!
On a more general note - the antibioitcs are helping - but i forgot how ill, even a mild pneumonia can make you feel. It was having pneumonia 4 years ago, after measles that my latest severe realpse came on - been more or less housebound ever since. But i do feel much stronger this time around.
I am pretty peed off with my GP's surgery though. When they put me on the proton pump inhibitor in June i said i was worried about side effects and they told me there was an increased risk of gut infections and PNEUMONIA in the elederly. I told the GP ( not my usual one) that i had lung fibrosis and M.E and therefore could be at high risk for Pn. She shrugged it off as unimportant. Some googling yesterday brought up a lot of research in this area - which generally concludes that those with pre existing lung conditions and immune preoblems should not be given PPI's and if they must then only after investigation and at the lowest dose.
I waited 3 months for them to agree to a refer me for an endoscopy for the gastritis and am still waiting to be seen - in the meantime they upped my dose to the maximum and i now have pneumonia. Apparently i am on the emergency list for the endoscopy - but im not sure that i can have it with this infection - there could be a risk of aspirating saliva etc i imagine. I have suffered so much iatrogenic harm at the hands of the NHS over the past 8 years, and i sowre i wouldnt touch another prescription drug, but when the pain from gastritis is so severe you cant get out of bed or sleep or eat, what else can you do. When you have a life threatening lung infection what can you do?
So pissed off.
(Re: not warning you about side effects of the drug, e.g., risks of pneumonia)
I don't blame you for being angry -- what a terrible story. I'm so sorry that you're having to go through this.
Well first of all, if the infection is in your lungs, it most likely is in your stomach/intestines too. It most likely came from there. You do realize that stomach acid is the first line of defense in the immune system, right? So if you inhibit stomach acid you will get an in infection, regardless of if you have a super immune system or not.
What you need is a non absorbing antibiotic like xifaxan to clear out the gut infection causing your GI issues you speak of. Those are completely related to your lung issues which are completely related to you inhibiting your stomach acid production.
Endos over here unfortunately are not much better nor are any of the doctors. There is no motivation for a state doctor to actually care for his patients.
In chinese medicine acid reflux is symbolic of liver stress. When I take lots of medications I get acid reflux. If you have a stomach infection to begin with you may get acid reflux. If you have LOW stomach acid you might get acid reflux. If you have a hiatal hernia you might get acid reflux. You might be getting bile reflux and have some gallstones and need to do a flush (especially if you still have reflux on the proton pump inhibitor). You might need hormones as well.
And I will say that most doctors (even in the US) would rather see their patients die than be bothered by endless symptoms that they cannot connect the dots to. No one integrates any ideas in medicine anymore. No doctor outside of a GI doctor even considers dysbiosis as playing a role in their sub specialty. And then you have to see 10 different specialists for ten different problems all with one cause that not one of them wants to find out. Then they will refer you away after they take your money and tell you you are a hopeless cause. We've all experienced it...let's just admit this is the level of medicine at most clinics today.
The low ferritin my CFS specialist says that is a common issue he's found in his ME/CFS patients. I have low ferritin too (low enough to be classified as borderline anemia). He never gave me a reason why this is so, so I asked my new CFS specialist the other day why is my ferritin low when Im eatting huge amounts of meat 2-3 times daily (over 800g per day.. sometimes over 1kg in a day).. and meat craving (hence my blood levels are fine..its only my ferritin which is to do with iron storage which is the deficiency issue) .
Hee said that it shows one is having to make more red blood cells then normal and hence using up all ones iron stores... He then went on to say it was either an indication of ones body fighting something or inflammation (I forget now which he said.. I got his talk to me recorded so will have to relisten to that part of my appointment). If I didnt eat massive amounts of meat daily.. enough to keep my blood levels up seeing I have hardly no iron stores at all.. I'd very soon run into anemia issues.
Also, low thyroid can reduce hydrochloric acid production in the stomach and therefore reduce absorption of iron.
Wondering if one of the links here is anemia of chronic disease.....B2 deficiency... iron transport problems. Supplemental iron would be a big no no if that's the case. Make dysbiosis even worse.
On the other hand, B2 can lower iron levels...if iron deficient, and make things worse...
I don't understand it this way... How could making growing possible again be interpreted as making things worse for us?
This study was done on specific rats which were growing. If they had not been growing, there would most probably be no need for extra body mass.
Supposing we still had a possible range of growth left (very possible since I grew more past age 50 on MK4), once that growing was complete there would not be any extra need for iron. It does say that riboflavin supplementation allowed for replenishing iron tissue stores. ?!?
Not making things worse I think?
The study says :
A recent study in Gambia (on humans) also reported that riboflavin supplementation with iron only improved hematological indices in adult males and not in children. This evidence supports the experimental finding in the present study, since in children, as in the weanling rats, growth may be an important factor influencing the riboflavin-iron interaction.
Another factor that might account for the lack of any significant differences between the hematological response of rats supplemented with the combined iron and riboflavin and those supplemented with iron alone is that there was a significantly higher amount of iron in the livers of rats fed both nutrients than in livers of rats fed iron alone. This suggests that, in fact, iron utilization was better in those rats fed both supplements than in those fed iron alone. Studies on iron supplementation of previously iron-deficient subjects have shown that following supplementation, the needs of the erythroid marrow are met first and then iron stores are replenished (27, 28). In the present study therefore, it appeared that rats fed the combined iron and riboflavin supplements were able to satisfy the requirements of the erythroid marrow for iron and replenish tissue stores, whereas those rats supplemented with iron alone were able to satisfy erythroid marrow requirements and not much more.
The significant depression of hematological status and tissue iron concentration in
rats supplemented with riboflavin alone for 2 wk following depletion of iron and riboflavin for 7 wk could be explained by the resumption of growth and increased body mass associated with riboflavin supplementation. The increase in body mass would increase the body's requirement for iron and thereby aggravate the iron deficiency.
Lots of good wishes!
Well, if one looks at "growth" as the type of growth seen in repair and replacement of damaged tissues, mitochondria, etc., -- especially at a cellular level, then IMO, we're 'growing' just as any other animal is. If we're low in iron (which can easily happen when one has been dealing with infections, poor immunity, etc.) and take higher doses of b2, then one should also make sure we're getting enough iron. I think...
Does that make sense?
OK. But this lasts two weeks on that study. If we use up the iron growing, I suppose we would just stop growing until we get more iron.
Maybe rats don't have enough blood to keep being tested for a long time? No way to find out what happens after the two weeks?
Well, up to now my gums are pink. Must be all that lamb's liver + kidneys + spinach I am eating.
Best wishes to all!
High in iron and cofactors (although the spinach...also high in oxalates...which maybe the k2 helps process?).
Well, no problem with oxalates here. But I don't have all the questions and answers yet, even though I distinctly feel I am on the right path.
Anything thought provoking is a help. And the article you cited was a help : it provided another explanation for the reason why MK-4 depletes Riboflavin.
One reason was that Riboflavin is used in the recycling of K2. More K2 to be recycled means more Riboflavin being used up.
Now I was reminded that growing uses up Riboflavin. And growing is dependent on K2 of course, which is why we both grew on K2. And relatively depleted ourselves of Riboflavin in the process.
The pleasure I get from accessing the truth is the most powerful medicine.
The Japanese say that every time you learn something new, you gain 6 extra days of life!
And best wishes!
dannybex, I remember now! You solved this yourself
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