Anyone Have Shortness of Breath with a Relapse

Discussion in 'Fibromyalgia Main Forum' started by Marlene35, Nov 18, 2009.

  1. Marlene35

    Marlene35 New Member

    Have had CFS for 22 years and been in a bad relapse since August. I have rather serious shortness of breath (air hunger and feel lke I am not getting the oxygen that I need). Have had this a few other times during a relapse. Do any of you have this symptom and is there anything that will help it.

    Thank you for your help.
  2. Nanie46

    Nanie46 Moderator


    Air hunger is often associated with a Babesia infection....see page 26 of this paper...and also p 22-24 for babesia info.....

    Fatigue is also a very prominent finding with babesia 26.

    The complete symptom list for lyme, babesia, bartonella, ehrlichia is on pages 9-11.

  3. Catseye

    Catseye Member

    Hi Marlene, I used to have this problem. It has to do with proteins not being digested correctly and they cause the red blood cells to stick together. Something like that, it's been awhile since I have thought about it. I remember taking large breaths and feeling like I was drowning just a little bit.

    Are you taking any digestive enzymes with every meal and, especially for the breakdown of proteins, betaine hcl (stomach acid supp) when you eat concentrated protein foods such as meat, chicken, fish or eggs? These should help immensely. Have you ever had a comprehensive digestive stool analysis done? This will evaluate your pancreatic and liver enzymes to see if you are making enough stomach acid and digestive enzymes and also what kind of job your liver is doing. And, of course, if you have dysbiosis going on which is a major cause of digestive trouble.

    Another thing that helped me immediately with the shortness of breath feeling was oxygenated water. It somehow helps the red blood cells to not stick together. Incidentally, the term for the pizza stacking of the red blood cells is rouleaux formation. I had looked at my own blood under a microscope and saw it happening. Then I got ahold of some oxygenated water from a friend who has his own machine and looked at my blood before and after drinking it and the water reduced the sticking together considerably. I don't know if you can find oxygenated water easily. I ordered some once when I was up in the US for awhile and it came in cans. The oxygen will leach through the plastic so avoid any company who sells "oxygenated" water in plastic bottles. It would have to be cans or glass. It is not the same as just fizzy water.
  4. Marlene35

    Marlene35 New Member

    Thank you all for your very helpful replies. I plan to look for the "oxygenated" water and see if that will give me some immediate relief. I don't know where I can go to get the blood cells tested under a microscope.

    I do take digestive enzymes part of the time but maybe I should take them more. I have many digestive problems so that could very easily be part of the problem.

    Again, thank you so much.
  5. Catseye

    Catseye Member

    Try taking the digestive enzymes when you eat and also on an empty stomach. When taken on an empty stomach they will find their way into the bloodstream and help to eat up the sticky proteins that don't belong there. The betaine hcl (stomach acid supp) you have to take with protein food only, don't ever take that one on an empty stomach or if you are eating only carbohydrates like a plate full of veggies or a salad.

    You don't need to see your blood cells, if you're short of breath it's highly likely because they are stacked together like pizzas on top of each other. Blood cells absorb and release oxygen all over their surfaces. When they're stacked, that's a lot of surface area that can't be used for oxygen transport - it is stuck in the blood cell.

    And the little "finger thingie" they use to measure oxygen saturation won't indicate a problem. The blood cells really are saturated with oxygen, but they just can't transfer it because of the stacking. I remember experiencing this in the hospital and they pointed at the little thing on my finger and said that was proof I was getting enough air (mine read 99%) and so it just had to be my imagination. I didn't know it at the time, but medical doctors are so ignorant in their knowledge of health that they operate on many false assumptions like this one and we suffer for it.
  6. karynwolfe

    karynwolfe New Member

    If you're having this, your body is under too much strain. Lie down, marly, lie down, and rest.

    You might notice sometimes that if you don't, your body will find a way to force you.
  7. Nanie46

    Nanie46 Moderator

    Marlene and anyone else with air hunger, night sweats or fatigue,

    It is important to remember that the key to possible recovery from your illness is finding the pathogen(s) that is/are causing your symptoms.

    Never be satisfied that your symptoms are considered normal because it is part of "CFS" or "FMS".

    Even though Dr's always said our illnesses had "no known cause", we all know that there IS a cause......they just do not look for it......leaving you with a diagnosis, but suffering for the rest of your life.

    So, again....the key is finding the pathogen(s) responsible.

    There is a protozoan infection that infects red blood cells that causes air hunger and is called babesia.

    The fatigue of Babesia infection is often prominent, does not clear with rest, and is made worse with exercise.

    It can even be transmitted via blood transfusion, yet our Country's blood supply is not screened for it.

    Not everyone with babesia has all of the symptoms...but other possible symptoms are night sweats, headaches, mental dullness and slowing of reactions and responses, dizziness/tippy feeling.

    Hypercoaguable states are often associated with Babesia infections.

    Babesia is also transmitted by tick bites.....and possibly other vectors as well.

    There are tests available to detect 2 species of Babesia, although there are at least 13 species identified...possibly as many as testing might detect the infection, but a negative test doesn't rule it out.

    Considering your symptoms, you should strongly consider the possibility that you have chronic Babesia and Borrelia burgdorferi (a bacteria) infections.

    PLEASE do not think "That's not possible because what I have is "CFS".

    Remember, you are looking for the pathogens that caused your doesn't matter what you call the illness.

    CFS is not a doesn't address the cause.....and therefore you can't recover from something that you can't treat the root cause of.

    I urge you to read closely the following information and ask could change your life.....

    Also, keep in mind that many, many people with Lyme and associated coinfections like babesia, bartonella, ehrlichia, etc have only ever had negative Lyme tests.

    A negative Lyme test should never be used to rule out lyme, yet most Dr's mistakenly do this all the time, leaving people to suffer forever.

    Lyme and coinfections are clinical diagnoses.....should be based on history and symptoms.

    All the best to you.
  8. Marlene35

    Marlene35 New Member


    Thank you so much for your helpful reply. Years ago I was tested for Lyme and it was negative. Do you have Lyme and if so, where do you go to get an accurate test?

    Also, have you been treated for babeesia, etc. and was it helpful as far as correcting the symptoms?

    I need to do something soon because these symptoms are becoming increasingly more difficult to live with.

    Thank you for your help.

    PS I have looked at the web sites yet but plan to do that tonight sometime.
  9. Nanie46

    Nanie46 Moderator


    You are welcome.

    Yes, I have a chronic borrelia burgodrferi infection. For 21 years it was only diagnosed as FMS.

    I knew I had to find the cause. For many years I thought it was strictly viral. I was wrong.

    I did my own research after reading a post on this board, and it changed everything.

    It is extremely important for you to remember that there is no 100% accurate test for lyme or babesia....that's why a negative test does not rule them out.....but non-lyme literate Dr's do not know that.

    The best test to get is a Western blot for Lyme IgG and IgM from Igenex lab in CA...test #188 and #189.....must prepay and later send in to insurance. Call or email customer service to get a free test kit with prepaid fedex label.

    Must have a Dr order, and order form and lab instructions are included.

    Get blood drawn on a Mon or Tues morning and lab must prepare and fedex the blood.

    For Babesia, there are different tests you can get.....Babesia FISH from Igenex (again prepay), a blood smear from Fry Labs and a PCR from Clongen Lab.

    You are really just looking for clues.

    My western blot was officially negative, but I had lyme specific bands show up that is evidence western blot info page 7....

    and this western blot info too.....

    Not everyone will show bands that will help with diagnosis...sometimes our immune systems are just too overworked after so long....and the testing methods are not great.

    My babesia test was negative. I do not have air hunger or night sweats. I have some fatigue (not overwhelming) and hot flashes (hormonal). But, there are mild to severe infections, so who knows. My LLMD thought it was possible that I could have it based on insomnia and hot flashes.

    Good Dr's know that you "treat the patient, not the lab test".

    I was treated for babesia for awhile based on the fact that Lyme symptoms will not clear if there is an untreated coinfection like Babesia.

    After I finished Mepron/zithromax and started back on Doxy/plaquenil, my neck pain has started to get better.....a real miracle.

    I have been treating Lyme and Co for 9 months now. I really trust my LLMD.

    Only Lyme literate MD's will understand all of this and be able to evaluate and help you....a non-lyme literate MD will just see a negative test and tell you that you do not have lyme....end of story.

    You can go to on flash discussion.........sign up for on Medical Questions Board..........create a post asking any questions you wish....the people there are very knowledgable and helpful.

    Make short 1-2 sentence paragraphs like I am here.... many of us can't read long paragraphs very well.....everything runs together.

    Also you can go to's Seeking a Doctor board and create a post asking for a LLMD in your state.....there aren't that many.

    My LLMD thinks that most people with CFS or FMS really have Lyme and coinfections as the cause of their illness.

    Borrelia burgdorferi can also cause symptoms that are diagnosed as MS, RA, lupus, Parkinson's, Alzheimer's, ADHD, autism, depression, bipolar disorder, etc.

    Lyme is known as the New Great Imitator.

    The CFS/FMS is really a symptom of a larger picture.

    Let me know how I can help you further.
    [This Message was Edited on 11/20/2009]
    [This Message was Edited on 11/20/2009]
  10. LadyCarol

    LadyCarol Member

    Have you had your heart checked ? Leaky heart valves can cause or contribute to shortness of breath. An Echocardiogram is one of the best ways of detecting leaky heart valves and other heart conditions.

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