posted
I'm 31 and have had Lyme for about 9 years. My sister is 25, and has been ill for about two years, having been diagnosed with lyme a little over a year ago.
She also has something I have tested negative for and and do not have symptoms of - mycoplasma pneumonia.
I'm extremely worried about her. You see, she is having these awful allergic reactions 2-3 times per week, reactions the ER has termed to be "anaphylaxis of unknown origin."
When she has these reactions, her skin turns a marble color, her throat swells, as do her lungs. After having gone through a reaction, her lungs are filled with fluid for up to a week afterward. At the ER, they've measured her blood pressure during a reaction at 210/135, despite Alison (my sister) being relatively calm. This BP reaction doesn't make much sense to me, as I've always been taught that when you're having an allergic reaction, the blood pressure drops.
About the only relief she's found is the daily use of multiple benadryl's, and long baths. When she's really bad, she's been known to stay in the bathtub for the entire day!
She is convinced she is going to die from one of these reactions, and has even gone as far as telling us she loves us, that she's had a great life, really depressing stuff like that.
I'm just at a loss with what to do for her. What could be the cause of these reactions? Can mycoplasma pneumonia do it when combined with lyme? Has anyone else experienced similar symptoms? Is there a treatment for mycoplasma pneumonia?
My family has made an appt. for her to see my llmd this Tuesday, and it will be conducted like a roundtable - bouncing different ideas off the wall.
We're all just really at a loss for answers, and hoping to find help somewhere before it's too late. Thanks for reading, and thank you in advance for your replies.
Marc
[ 25. August 2008, 09:56 AM: Message edited by: skimpbiz ]
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Marc,
What is she eating? Ingesting, in any form? Inhaling? She needs to make a complete list of EVERYTHING that she eats and drinks.
The culprit causing the reactions might well be on that list. Even if it was a familiar substance/food/drink that she had not reacted to previously. Allergies are like that, they can spring up out of nowhere. E.g., nuts and fruits especially.
Hope you find the cause soon. Meantime, have an Epi pen on hand at all times along with benadryl.
Posts: 2557 | From home | Registered: Aug 2006
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She is not on abx (can't take them without reaction), but is on a bunch of supplements right now as given by an AK doctor in Washington.
While I am not familiar with this particular doctor, I have personally made good progress in seeing a practicioner who does muscle testing,in my case called "Nutrition Response Testing."
She just has bottles upon bottles of supplements, and I worry she's taking too many. I've advised her to take only the 3-4 that she knows are helping her, she now says she's done that, but is still having the reactions.
She has also removed wheat from her diet, as she has tested allergic for it, and with me, my body produces an autoimmune response to gluten.
I don't understand how or why she's having all of these reactions and I'm not, and I just feel so badly for her. I want to see her well again. She's a talented musician at the Berklee College of Music in Boston, and there are big things in store for her.
Marc
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Marc,
Yes, it must be difficult. Sorry to hear that she is going through his. Anaphylactic allergic reactions are painful and really dangerous.
Since she is having these reactions frequently, you mentioned several times/week, why not eliminate certain items and see if that helps? Especially, if I were you, I would ask her to cut out the 3-4 supplements (which might be mixtures of things) before seeing the doctor on Tuesday.
And please be sure she brings her list of everything she consumes in every form on Tuesday.
Good luck and I hope she gets better soon!
Posts: 2557 | From home | Registered: Aug 2006
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I hope your LLMD will suggest stopping ALL supplements... then adding them back one at a time.
Let us know how the appointment goes. Has she been tested for all kinds of food allergies??
Is she following a completely gluten-free diet at the current time?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
marc,
what a concerned brother you are; god bless you marc for the special relationship you have with your talented sister!! i envy her.
i'd suggest adding "mycoplasma pneumonia" TO SUBJECT LINE; then you will grab attention of those diagnosed with this too who can share valuable info for you.
to edit, click PENCIL, 3rd box to right of your name, add that,
make sure you go to lower left hand side to mark box for all replies to come to you!
perhaps, it's what is in supplements that she is allergic to?? good luck.
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posted
Thanks a million Betty, and thanks for the other replies as well. I will now make the necessary thread changes per your suggestions. Hope everyone has a good week.
Marc
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I also have mycoplasma pneumoniae and was getting hives on a regular basis as a result. I've been on various abx for many months now that cover Myco Pneumoniae and haven't have hives in awhile.
You said she can't take abx? I wonder if the reactions she has to abx are actually herxes? That's a tough one though b/c if they are herxes which are causing anaphylaxis, that's extremely dangerous and don't know how she could follow through w/treatment.
It almost seems like she would need to stay in the hospital to be monitored while going through the herx since she obviously needs to be treated for the Myco and Lyme.
I'm sorry to hear she's going through such a difficult time! Good luck w/her upcoming appointment w/your LLMD. I'm sure you'll come up w/a game plan to help you sister.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You may already know of this site. If not, hope it helps.
Good luck.
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This is the site for Garth Nicolson, Ph.D., a major researcher in this area.
The Institute for Molecular Medicine
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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