Really NEED HELP. Cannot Breathe..please, Victoria/Jarjar anyone

Discussion in 'Lyme Disease Archives' started by Kimba4318, Jun 14, 2007.

  1. Kimba4318

    Kimba4318 New Member

    I went to the ER Monday night. I have had air hunger for a while now, but starting Sunday it has been non stop... Unless I lay down, I CANNOT get a full breath, then I get dizzy.

    The ER was puzzled..."must be the Lyme"... my blood pressure was way low... The Lyme doc says it is because I am so sick and usually when you are, you react even stronger to the treatment which is good and bad. I have alot of inflammation. My cardiologist wants to do a stress test tomorrow, but I cannot go. I cannot drive because I get so dizzy sitting up and not taking deep breaths that I feel like I am going to pass out. I cannot imagine making my heart race right now.

    What can I do to breathe? Are there any certain meds/supplement that you think is making this so much worse? DO you think prednisone would help stop the inflammation so I could breathe?

    I am desperate... as if the pain is not bad enough, I cannot lay on my back all day... I want to breathe so bad. I also belch constantly when trying to breathe. if that means anything. I can barely eat because I feel so full inside (it won;t hurt me a bit, but I lost 10 lbs. in 2 weeks)

    I am dizzy... The doc suggested stopping my minocycline for a bit and reducing my benicar a little, but said he does not think that is causing all of this, just the inflammation.

    I just need your advice.. did this happen to any of you, how long did it last, when might it go away?

    Thanks to anyone that can help me.. I am desperate!!
  2. mollystwin

    mollystwin New Member

    I'm sorry you can't breath! That must be horrible. The only advice I have is Do NOT take prednisone. I think that is a steroid and steroids are bad for lyme. It makes the lyme worse.

    Could you be in a big herx? Maybe go easy on your meds to see if that helps?????

  3. jarjar

    jarjar New Member

    Benicar and Mino....sounds like Marshall Protocol. You should post this on the emergency section of the MP board.

    I do have a totally recovered MP friend that had to take an ER visit but she stuck it out and has moved on with her life. She had heart related issues best of my knowledge.

    As much as I dislike the MP board, I still say post on the emergency section.

    Please do not let this scare you from the MP as there are plenty of people with lyme that have to go to the E.R for abx reactions or other related problems.

    Wish we could exchange phone numbers on this site so I could have my friend call you.

    Rereading your message about low blood should keep some sea salt and water handy to keep your blood pressure up. It will eventually stabalize on the MP.
    But it helps raise your BP.

    Hang in there Kim

  4. Kimba4318

    Kimba4318 New Member

    Thanks so much Jay & Dar..
    Yes, Jay I do wish we could... noone else can relate! I am happy to say it has eased up a bit with, like you said... SALT and more SALT and I did not take the Benicar today. They told me to stop immediately but did say I will have to re-try it before to long... hope I ease into it a little easier next try.

    I can finally breathe a little. What an awful feeling
    :-( I read about it decreasing oxygen to the brain and organs, that is why I had to stay laying down and all. Scarey!!

    I knew you would help! I will keep you posted... so, did your friend start back on it slowly or just go thru what I did and get thru it? I do not know if I can go thru another 5 days like that... pure misery. I would take more pain any day over not breathing right or being able to stand up (I should not speak too soon, I am already suffering greatly with the pain).

    I am such a ding dong... I did not know there was a "MP" area... so good to know. Why do you not like that part.. is it very sad/scarey?

    Thank you soooooo much again!!!!
  5. grace54

    grace54 New Member

    Sorry Kim, it is scarey when you can't breathe. While I was taking my doxy I had so much fluid in my lungs, I don't know why and I will call my DR but I was having trouble breathing and had to clear my throat chronically. I have stopped for two days now and feel better.Hope you get better. Blessings
  6. jarjar

    jarjar New Member

    You can private message me at the MP website and I can get you in contact with the friend that I mentioned earlier. She has a heart of gold and wants to see others recover with the MP. She has been in your shoes and I'm sure would love to help out.

    She and her mother know the MP by VERY well. Take my word.

    I have the same name on the MP site or Lymenet.

    [This Message was Edited on 06/14/2007]
  7. victoria

    victoria New Member

    Sorry, I totally missed your post earlier today!

    I hope you post on the emergency part of the MP board, and your doctor could probably call Marshall as well on your behalf.

    I've never had anything like this, nor my son (he's just on the oral abx, not MP).

    But when my son was herxing too much and too many were unbearable or scary, his LLMD told him to take a vacation from the meds. The rationale is because the Lyme has such a long replication cycle, you won't be in danger.

    Seems like a wise thing to do if you cannot get answers right away, to me.

    Please keep us posted! Hope this clears up soon for you and you get some answers ASAP!

    all the best,

    [This Message was Edited on 06/14/2007]
  8. Kimba4318

    Kimba4318 New Member

    Thank you all sooo much!! Still able to breathe a little better.

    Soooo... I am watching what I say... do I go to another site, the MP site? I was thinking the MP part was on here but I think I am wrong.

    Also, my blood is way too thin due to the new supplements and my coumadin. I will get that rechecked next week with some adjustments (one thing after another)

    I will try to research it to find you Jarjar... that would be incredible to be able to talk with your friend! I would be forever grateful.

    Thanks evryone (Victoria, Jarjar, Grace54, dar)!!!

    Big Hugs,
  9. jarjar

    jarjar New Member

    For starters I would drop all the supplements that you are mixing with the MP. Somethings just don't jive with the MP.
    Keep up the salt and water.
    I have noticed where some people have posted thier secondary email account such as yahoo recently. Not sure if it is allowed now or not. If you want to post yours I talked with the lady I mentioned earlier that made the E.R trip and she would love to talk to you. If you can post your email I will let you know soon as I see it today and you can delete it. Not trying to break any rules but have seen more people post theirs lately.
    I can also be sent an instant message on lymenet. I made a post on a Vita D thread last nite you can look it up and send me a private message with contact info. Just some ideas.

    You might also just want to drop the mino till your symptoms get better. Breaks are needed at times but keep up with the benicar. Are you avoiding light and wearing noir glasses?

    [This Message was Edited on 06/15/2007]
  10. LSM

    LSM New Member

    JarJar got in touch with me privately and asked me to take a look at your topic here on this message board, so I registered in order to do so. (This is my first post here in this forum, which I didn't even know existed until JarJar told me about it a few hours ago.) I am the mother of the successful MP patient to whom he referred.

    It will be better if we work together privately, either by e-mail or by phone, instead of continuing to post here in a public forum. My e-mail address is texlyme_mom-at-yahoo-dot-com. (That's not a clickable address, of course, but I trust that you can figure out how to contact me.)

    If you contact me by e-mail, then I'll be glad to give you my private unlisted phone number also, since it might be more convenient for us to discuss your situation by phone. I have a flat-rate calling plan, so all of my long distance calls are free for me. Therefore, I can return your call so that you don't have to pay for it. (Don't hesitate to remind me in case I forget to suggest doing so because I can be absent-minded about it sometimes.)

    For the sake of others who are reading this topic, however, it should be noted that the FDA prescribing information for Benicar says that it should NOT be taken together with Coumadin. Coumadin is one of those drugs which is contraindicated with many, many other drugs, and not only just with Benicar, so this kind of warning is not unusual for Coumadin.

    However, there might (or might not) be a way to work around this problem, depending on your individual situation. (I hope you remembered to ask for a pro-thrombin time (PTT) lab test while you were in the ER, but my guess is that you probably weren't thinking about that matter at all right then, due to the rather scary nature of your urgent SOB.)
  11. LSM

    LSM New Member

    JarJar gave you some really good advice about increasing your salt and fluids while you are taking Benicar. Benicar causes the body to lose salt and it is therefore very easy to become dehydrated. I forgot to mention this in my previous post, but it's important enough that I wanted to add it now before I forget about mentioning it.

    Also, here is a link to our daughter's amazing Success Story with the MP, which is posted here at the ProHealth website, for the sake of anyone else who might be interested in considering the MP.

    Our daughter was one of the very first Lyme patients who started the MP back in the summer of 2004, and she is therefore one of the oldest Lyme/MP patients around. We are glad to work with other MP patients on a private, individual basis also, in case anyone else wants to take advantage of my offer (see my previous post, immediately above) to contact me by private e-mail or by phone.

    PPS -- Whoops, I just realized after posting this message that my link above isn't clickable. Therefore I'm editing now to add that, in order to find her story, just use the search function here at ProHealth and type in Marshall Protocol. Her story is the article entitled "One Woman's Amazing Recovery with the MP," (dateline: 11/22/2006) but there is also another excellent recovery story by another MP/Lyme patient posted here at ProHealth also, so do be sure to read her story also.[This Message was Edited on 06/15/2007]
  12. Kimba4318

    Kimba4318 New Member

    Wow ... Thank you!!! I just emailed you... Please let me know if you rcvd. it.!!!! YOu all are the BEST! I need someone to discuss this with that knows what they are talking about!!

    Yes!! My PTT/INR was 4.3.... TOO THIN with al these meds, so that leaves me with enormous bruises all over my legs, etc. I look a mess... almost like I feel.

    Dar... They do highly suspect BABS, but the blood work was inconclusive...

    Let me know if you get this...
    Huge Hugs!!!
  13. LSM

    LSM New Member

    I'll check again in a few minutes, but your e-mail message didn't come through (yet). Here is a clickable version (I hope), which I'll edit back out again just as soon as I know that you have received it.

    (edited to delete private e-mail after successful contact with Kimba)

    I'm guessing that you probably used a hyphen instead of an underscore mark when you tried to key in my e-mail address.
    [This Message was Edited on 06/15/2007]
    [This Message was Edited on 06/15/2007]
  14. munch1958

    munch1958 Member

    Have you looked into this?
  15. jarjar

    jarjar New Member

    Kens love affair with bashing the marshall protocol is so old news. Yes he was involved with it in the early stages and much has been learned since then.

    If you go to remedyfind you will find some good reports on the MP.

    Not to mention Sujay the beloved Dr. who use to post here has over 200 patients on the MP and most are all making slow steady good progress.

    Once again the reason your Vita D is low because it it being converted to Vita d 1.25 which is making you ill.

    I do understand you are not up for the MP so no pressure from me as it is your life and it is your choice.
  16. LSM

    LSM New Member

    Under another topic elsewhere on this message board, you mentioned that you have biopsy-proven sarcoidosis. For that reason, you might want to consider the favorable reports of other sarc patients who are making dramatic progress on the MP instead of assuming that the remarks on that other website which you referenced (link above, in your post) represent a fair and balanced evaluation of it.

    I would urge you (or anyone else) to weigh the many favorable remarks which are posted in the Phase One Alumni Forum at the MP website before making up your mind against it.

    I tried to post a message to you yesterday under that other topic here at this ProHealth message board, but I don't know if you have seen it yet or not. I posted my message to you before I realized that you were already aware of the MP so I hope that you are not offended by that suggestion.

    Like JarJar said in his message above, we don't ever want to pressure you or anyone into doing something which you have no interest in doing. However, in fairness to others who are also reading this topic, it is equally important to counter the unfair bias against the MP which is posted by that other fellow who is so prejudiced against it (in the link which you posted, above).

    I have worked as a support group leader in the CFS and Lyme communities for the last 15 years (although with a different screen name - long story), and I know better than to try to persuade anyone to do something which s/he believes is not right for her/him. I have always tried very hard to be as objective as humanly possible whenever discussing the pros and cons of any treatment options or therapy protocols with everyone whom I've worked with over the years, and I recognize that the MP is not the right answer for everyone for a variety of valid reasons.

    Furthermore, I have attended numerous medical conferences over the last two decades (since 1987), including several CDC-sponsored CFS conferences (Boston, '98; Seattle, '01, and Madison, WI '04), so I am quite familiar with many/most of the other treatment options which are availabe to both CFS and to Lyme patients. If there were a proven sure-fire cure that worked for everyone all of the time, then there wouldn't be any need for message boards like this one or any of the many other CFS and Lyme websites on the internet.
  17. munch1958

    munch1958 Member

    I agree that everyone is different. What works for me may not work for someone else. People with this DD have to try anything and everything. When you find yourself in the ER maybe it's time to question your meds is all I'm saying.

    My biggest question about the MP has to do with it's safety record. If the protocol is so safe why is there an emergency section on the board? Why have so many PWCs been admitted to the hospital with severe medical issues? Everything can't be due to a herx!

    I've read on many other message boards that critics of the MP are kicked off the Sarcinfo board. There are just glowing reports of it's successes but no reports of it's failures. One protocol can't possibly work for everyone.

    Both my 1,25-dihydroxy AND 25-hydroxy were low. If one was elevated I may have considered the MP but they are not. I suffer from severe SAD every winter. I don't buy into the MP theory that winter depression is due to the after effects of the summer sunshine. There are far too many reports and scientific studies that say it is from LACK of sunlight.

    Living in the dark, wearing sunscreen and sun glasses in my own home is not for me! If there's too much light to grow a plant in my home than there's too much light for the MP. I'm not about to put black plastic over my windows.

  18. LSM

    LSM New Member

    Unless your blood sample was frozen, then your 1,25-D level result was inaccurate. Lab Corp does not freeze the blood during transport for their D-metabolite testing. Therefore, it is recommended to use another lab, such as Quest or CPL, which do freeze the blood samples during transport. 1,25-D degenerates very rapidly in unfrozen blood samples, making the results invalid.

    One of the most experienced MP doctors has been quoted as saying that he has found that folks with truly low D-metabolite levels are usually the very sickest patients of all. He has found that it is necessary to start them out very slowly and to work them up very, very gradually on the MP meds.

    Surprisingly, the failure rate among those who follow the MP lifestyle strictly enough and who comply also with all other aspects of the program very carefully is quite low, especially when compared with other Lyme therapy programs. I've been tracking their progress reports for the last 3 years. Unfortunately, however, the Phase Two progress reports are kept in a separate (hidden) forum which isn't openly viewable except by those persons who complete Phase One successfully and who are given access to that hidden forum.

    You are right about the heavy-handed censorship at both the MP and the SarcInfo websites. That is the chief complaint of everyone who has participated at either website, and it is a very justifiable complaint. Even the private messages are not really private and are monitored -- and occasionally even edited! -- by the moderators, if you can imagine such an invasion of one's privacy as that. That's inexcusable, IMO!! Believe me, if folks weren't truly satisfied with their degree of recovery of their health, they wouldn't put up with that kind of nonsense at all, and many of them do stop posting for that very reason.

    Regarding the inconvenient MP lifestyle, it does get a lot better after the first 12-24 months. Furthermore, some patients who start the MP early, before their disease has progressed too far, are not as light sensitive and therefore do not have to be as strict about avoiding light and sun exposures as the very sickest folks must do.

    For example, our daughter is planning to go water skiing this summer, while wearing lots of water-proof zinc oxide sunscreen of course and then going out only very early or very late in the day, before or after the sun's rays are so strong. This will be her first season to do so, although she probably could have gotten by with it last summer without too many problems even then.
  19. munch1958

    munch1958 Member

    Are you feeling better?
  20. Kimba4318

    Kimba4318 New Member

    Hi Munch.. thanks for asking.. still feeling worse than usual but hope it will let up soon. The breathing is very annoying, yet not as bad as when I went to the ER. I discontinued everything inc. Benicar and Minocin and just started back on some supps and the cats claw until I can see my doc and decide what Protocol is best for me.

    I really appreciate your input by the way! I have to be real, as far as what will work for my lifestyle.

    I wanted to ask there a certain name of the Protocol that you are doing? How long have you been getting treatment and how long had you been infected (if you know when it was)? How are you feeling with this treatment? Improving a little, alot.etc.???

    I wanted to write to you the other day, so I am gald you asked about me.