Update From Lindajoy

[mom4cem]

Hi,

I spoke to Linda this evening. I was surprised by her call as we had not spoken yet but had corresponded and I had given her my #. For all of you who remember and those who don't LindaJoy had been diagnosed with EE, eosinophilic Esophagitis after a lengthy stay at Cleveland clinic.

I was glad to hear from her but very sad to hear what she is going through. She is too ill to do anything, not even enough strength to go on the computer. She asked if I would post what is going on and if anyone has any ideas at all or can come up with a name of someone they think can help her. Please let me know and I will get it to her or if you wish, Linda gave me the o.k. to give her # if you want to contact her directly.

She is losing weight quickly. A pound a day. She is now down over 20 pounds from what she was and they don't know why. She has been experiencing a cascade of symptoms after ingesting certain foods and even medications some of which are intense head and back of head pressure, temples hurt badly. Whole head and face feel full of pressure. Her heartrate and bloodpressure spike up. Sometimes her eyes go blurry. Her leg muscles feel like they are quivering, sometimes she has had this in her arms also, but mainly in her legs. She does still eat, limited but does eat, and is still losing weight.

GI problems of heartburn, diarrhea. Dizzy, rash over her cheeks and nose(sounds like lupus but she has been checked), burning rash over her back and shoulders and she feels hot. Her armpits will itch.

Her local doctor and GI doctor don't know what to do with her yet they will not admit her into the hospital even though she is losing weight and strength fast. They don't feel it is EE related either. She is too ill to travel to Cleveland, and even if she could she does not think they could help. They have long since written her off as having physiciatric problems that she must be causing these problems on her own. Mayo has a long waiting list and once again, she is to ill to travel. Her and her husband have looked into "Angels" but they feel she is too much of a risk with the severe tachy and that she is not stable.

She looked into Churg-Strauss but they don't think she fits the strict criteria.

She is depressed and upset, who would not be. She feels, no, she is certain she is dying and will not make it to wait for an appointment for Mayo(which after prodding by her husband, her GI dr. is looking into ), I had to do a lot to keep from crying.

Linda is reaching out to anyone who can offer her any ideas on what she is going through, anyone she can turn to for help, any ideas on doctors,,anything at all.

From all she said, I don't know how thorough if at all they were in all her tests. Linda feels that way. They can't help her, yet see she is suffering. Each dr. pushes her off to another. If it is not black or white, they can't seem to help what is not a textbook case. No grey in-between.

It does sound so very much like an autoimmune problem, yet dr's say no. I think it is a matter of finding the right, caring doctor, there must be one out there to help her.

I wish I could have jumped in through the phone to be there and hug her. I felt and feel so helpless. I don't want to see anyone here going through the problems they are going through.

Linda does want you all to know even though she is too ill to get on the computer, she has thought of everyone, misses everyone and wants you all to know she appreciates your friendships and all the support you have given to her.

Once again if anyone can offer any insight, know of anyone who experiences similar symptoms, know of a Dr. who they think can help, please let me know.

Keep her and her family in your thoughts and/or prayers too.

[jkapache]

Well I have no advice/ suggestions, just wanted to say that I am sorry and will keep her and her family in my prayers. Sounds like a very stressful situation for all involeved.

[Dizzy Dame]

The only doctors I can recommend are in Maryland, and are probably too far away to help. I really hope Linda Joy gets some help! She'll be in my thoughts and prayers.

[wareagle]

Could it be something as "simple" as an allergy? Some type of histamine response to the foods or meds. she's taking? I have no idea on any doctors to recommend...wish I could be more helpful!

Please let her know that I'm thinking of her and hope that she gets some relief very soon.

[corina]

Linda,

i am so sorry to hear that you're doing this bad. i wish there was something i could do. know that i'm thinking about you and that i hope that your docs will find out what's going on and help you.

corina

[MightyMouse]

EE can go hand in hand with mastocytosis--not sure if that's what's going on--but as a poster above said, it could be related to allergies/allergic reaction. Mast cell stabilizers include the active ingredient in nasalchrom, which I believe is now over-the-counter (otc). Other OTC items that can help with histamine/mast cell issues: h1 and h2 blockers (h being histamine), ie. benedryl and zantac/tagamet. This does not include otc (or Rx) prilosec --different type of me--roton pump inhibitors that stop your digestive juices from being pumped out into the guts.

I have a friend on the EDS boards who has similar issues from eating--they believe she has an allergic reaction and it sounds a lot like the reaction you have, but she also gets swelling in the mouth throat, etc., and then hives. I don't know what to suggest other than perhaps an allergist? Maybe it's an atypical allergic reaction?

Has Linda tried a diet that eliminates various foods one by one as possible offenders?

nina (big hugs to Linda to feel better)

[mom4cem]

Hi MM and all,

Linda told me she has some specific allergies which she has eliminated such as dairy. She has really limited to what she can eat or take as medication. I also mentioned the Mast disorder. Sounds like her system is very much on overload and is overacting to everything. Perhaps a good environmental/food allergist might have some insight. I'll have to mention that to her. It is just so difficult to Dr. shop as we all know, especially when you feel time is running out.

I will let her know,,thank you all.

[calypso]

This is awful news. This does seem so much autoimmune in nature to me, but of course, if she's been thoroughly tested in that respect by multiple doctors, we probably can't argue. Just please let her know we're all thinking of her and not to forecast into the future -- i.e., that she's dying. Many of us here have thought we were dying at one point or another and turned things around somehow.

I would also encourage her, depending on her financial situation, to look into alternative treatments (acupuncture, naturopathic medicine) if she has exhausted all Western med. options. Some others here may not like that advice, but when in desperation, you try whatever may work. And these two disciplines have proven successful to many people.

Amy

[MomtoGiuliana]

So sorry to hear how unwell Linda is. I hope she gets some relief soon and will hold her in my thoughts.

I second Amy's suggestion--I would just add that b/c these alternatives are not well-regulated or supported by research in many cases, you do need to be careful that you are getting a safe treatment regime, even if it ends up not being effective.

Katherine

[Guest dionna]

Linda Joy,

I personally have no experience with all the things you are having to go through with right now. In fact, I can't even imagine it. So I do apologize for not having any advice or suggestions to share. Only perhaps a little motivation to just keep strong!

Know that we too, are thinking of you. You will be in my thoughts and prayers. I hope that very soon you do get the answers and relief that you need. Perhaps it is something that they can easily fix and you will be just fine.

Dionna

[MightyMouse]

My friend on the EDS board is only allowed to eat steamed rice and steamed chicken at this point. As for the dairy issue, sometimes one may react to dairy when it's actually another issue that's causing the dairy to be a problem. For example, those with celiac who routinely eat gluten can become dairy intolerant... BUT if not on any gluten, they can eat dairy without incident.

Some of the best allergy immunology folks are at Hopkins in Baltimore. Also, Mayo probably has an allergy group.

If she's reacting to everything, benedryl might calm her system down enough to be able to eat better or at least get some pediasure or ensure in her to boost her body's nutrient intake.

Nina

[mom4cem]

Thanks Nina, I'll pass it on.

[DancingLight]

I highly recommend the EO28 Juice boxes made by Scientific Health Solutions. They are made for people who have severe GI problems, but are also free of most anything that could be causing allergic reactions (as Nina is suggesting could be going on).

I don't know what is going on for Linda...but wanted to mention these juice boxes b/c they literally saved me after my GB surgery from becoming malnourished. I cannot tolerate many foods (dairy, gluten, etc and even traces can make me ill). These juice boxes contain 'nutrition in a box' and if she can get these down it is at least something and maybe won't make her react like she is right now to everythign she is trying to eat. Maybe it's a crapshoot, but it's worth a shot. The less we eat, the worse our ANS gets and the more haywire it goes.

I also agree with others, that many of us have felt like we are dying...and it does pass. I don't want to minimize b/c I have really, really thought this at times when I was so sick...I pray that she will find medical care that she needs.

Emily

[MightyMouse]

Mom4Cem, I pm'd you with info from my friend on the EDS board.

A synopsis for those here:

+there is a differentiation between mastocytosis (pos biopsy) and mast cell disorders (where the mast cells misbehave and cause histamine problems).

+for EE, there is a chromlyn solution that a GI doc may Rx to drink to try to stabilize the cells in the esophagus.

+a doctor can help with combining Rx and OTC allergy meds - some meds can be used at higher dosing, under the care of a doctor, to help stablize the system so it calms down a bit more

+one can go to Mayo as a "walk-in" and be seen by an internist, who then coordinates appts they feel might be needed for you--but you literally get a number and may have to wait quite a bit (i.e. days, a week...); kind of like flying on standby--you get an appt when ever there is an opening. However, it still may be a faster solution than trying to see specialists one by one at home.

Nina

[Jacquie802]

I just wanted to say that I hope Linda finds a doctor to help her....She's in my thoughts...

Jacquie

[juliegee]

I think Nina mentioned mastocytosis as a possibility. Linda Joy sure seems to have many of the symptoms. I hope her doctors are looking into that. She is in my prayers.

Julie

I just wanted to say that I hope Linda finds a doctor to help her....She's in my thoughts...

Jacquie

[Gena]

I just wanted to say I can empathize with Linda Joy. I had very similar symptoms after eating and kept losing weight until finally being dx'd with celiac disease (this was about 5 years ago). Even after going gluten free for a few months, my body was still overreacting to many foods I was eating.

I had food allergy testing (the kind they do with blood tests, not skin prick) and discovered I was having an immune reaction to 26 different foods in addition to gluten. Even though I was pathetically thin, I had to eliminate virtually all but the most basic, unprocessed, non-allergenic foods from my diet. I did this for 3-4 months and my body began to recover fairly quickly.

I can now eat many of the foods I was once allergic to (except gluten of course, as I still have celiac). Many of my problems were caused by leaky gut syndrome (increased permeability in the gut caused by large spaces that develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream.) This leads to other food allergies, inflammation and problems throughout the body.

I am not suggesting this is what she has, but just sharing my experience. As Nina and others mentioned it certainly sounds like an allergic reaction and overactive immune response. I hope Linda finds relief and an excellent doctor soon.

Sending lots of hugs,

gena

[labas_2u@shaw.ca]

It sounds so much like autoimmune.....

Has she been tested for 'hereditary angioneurotic edema'? I know someone who is being tested for this because of similar symptoms........

Not a doctor by any means but just grabbing at straws and trying to add some ideas that might open up some other avenues....

Please tell her we are thinking about her and sending her best wishes....

Maggs

[dizzygirl]

wow linda is going thru alot..

what about looking into a medical transportation flight? I just seen somewhere about meds flight.. I will searcha round and see if i can find it... and my next thought was what about vanderbilt or something> if she is able to arrange med flight?

my thoughts also went to mast cell.. and allergy or something...

Im sorry that she is feeling so badly.. and i do hope that she is able to get some help very soon.. please sned her big hugs from me!

[dizzygirl]

ok here is the website i was thinking of.. you (linda's hubby) can go to...

www.wishesandrainbows.org

on the main page you scroll down and go under assistance there is a link under there called patient travel assistance program.. click that and it will bring you to a page about National patient air travel..(helpline 1-800-296-1217 is there number).. they have a program called mercy medical airlift.. you have to have you doc prove medical necessity and things like that..

maybe they can help with airflight to get linda to where ever she is able to get into.. i "think" that it is a seperate program from anglet flight.. though not 100% sure.. I hope that this helps some.. and that she finda somebody to help her..and gets away from those docs that think she has psych probs.. that is $%*!!!!!!!!

goodlcuk

[MightyMouse]

Dizz, I think one of the concerns for Linda has been that the flight services felt she was too unstable to be flown anywhere right now at least I think either mom4cem or her husband told me that? Sorry, brain fog day, but I'm pretty certain I'm correct that they've looked into it.

nina

[dizzygirl]

nina yeah i know.. i know that she cant do angle flight... but maybe a medical transport.. i mean where maybe b/c she is so sick that she coudl qualify for some kind of help.. maybe a nurse or something would volunteer to fly with her o something.. or ground medical transportation..cant hurt to look into.. just trying to help ..

[Jacquie802]

If she was admitted to the hospital I wonder if they could MedFlight her to a bigger hospital. My mom was in ICU when they didnt know what was wrong with her, she had SJS/TENS, and ended up MedFlighting her to MassGeneral....

[leah1321]

Many of those symptoms may be related to rapid, unhealthy weight loss and the weight loss may be a result of the EE. I do, however, have some similar symptoms. I have leg weakness, gastroparesis with bad reflux but also diarrhea (now well controlled with meds) and I also have mild celiac disease that has improved so much with diet that I no longer even test positive for it in the recent blood tests! (was positive before though). I also get rashes. Vanderbilt thought I had mastocytosis when I went to see them- so much so that they did not even think to test me for other disorders. I was negative for it, but had very high histamine levels nonetheless. I still get rashes. That is why I have a tentative Dx of Lupus with a definitive diagnosis of Rheumatoid Arthritis. But, I have negative blood tests. My RA was found through bone scans and years of monitoring the progress of my inflammation. I also found out that esophageal spasms and the blood and protein in my urine were related to autoimmune problems. It can take 20 years for blood tests to be positive. One way to find out what the rashes are is a skin biopsy when the rash flares. I have to rush to a dermatologist who specializes in Lupus rashes and other related disorders when my rash reappears (it was bad for months but plaquenil has improved it dramatically so I only get it for two days here, three days there and often the entire length of vacations or after sun exposure). That is another way to check for Lupus- a skin biopsy. The plaquenil has made a HUGE difference in my life, although I am still getting worse. My illness progress has slowed a lot though.

Mastocytosis can be tested with a 24 or 48 hour urine (I forget already) by lots of places. It does not need to be Mayo or Vanderbilt, but they would have thought of it if we had not mentioned it. Endocrinologists might have some other ideas too. Mastocytosis can be treated with H1 and H2 blockers for a while. After the urine is positive, they actually done a bone marrow biopsy to see how far the illness has progressed and other details. It is a very rare disorder.

I think the main thing for Linda is to put on weight to gain strength. Many of her symptoms will improve after that, I think. Unfortunately, she might have to do that by having medical intervention in the form of a Gtube or a IV nutrition et al. If her esophagus is the problem, she might have to bypass it by putting a tube in the intestines or she might have to supplement many times a day with high calorie liquids. That is what I had to do to go from 20 lbs underweight to 10 lbs over (oops, once I put on weight and found good meds, I also rediscovered food). An allergist might also be helpful for discovering the rash's origins as well as any food allergies that could be destroying her gut. I suffered for years and years but am now functioning pretty well (can't work full-time or anything, but I do a lot and get around very well but I used to be mostly bedridden)

Tell Linda we all hope that she gets better soon!! I hope she finds some answers as well- we wish her luck. I hope I helped. I only post when I think I have something helpful to say and when I have a chance to go online, but Linda might remember me from over the years (I started posting on NDRF 8 years ago!)

Best,

Leah