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Other Platelet Disorders

TOPIC: Here we go again

Here we go again 5 years 4 months ago #48630

  • eklein
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Sandi,
would you consider trying a super restricted diet for just say 5 week? Chicken and rice and spinach? When I got my intestines calmed down, got rid of that source of inflammation, I had huge improvements in lupus related issues. Lemon is ok on my diet (not huge amounts, but say, juice of one lemon or so a day) so you could stay on that.

I don't know that any food is a cure, but for me and some, foods that cause harm in my intestines cause harm throughout my body. When I eat the wrong thing and get a D attack and cramps, I also get a platelet dip, a deep fatigue and weakness, and occasionally much worse.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Here we go again 5 years 4 months ago #48632

  • DanC33
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Like you, it seems like every time I go to a doctor I end up with another pill to take. So I'm always looking for natural things that work. So if drinking lemon juice works that well, it's definitely worth a shot. What ratio?

And I also have the battle with constipation and diarrhea. But because I have Parkinson's, it also causes constipation because PD slows down digestion but so does the Norco we take. I was given a laxative called Amatiza, lets just say there's a reason they put the steel hand rails in the handicap stalls. :pinch: So I stop taking it and end up constipated... never ending cycle.

As far as the UTI's/bladder problems. My Urologist is pretty sure that I have a neurogenic bladder. He said that it's common with both PD and Lupus. Then add a weak immune system and it adds up with all the symptoms you mentioned. Mine has become so bad that I have to self catheterize, otherwise I end up making a trail to the bathroom every 30 minutes. So if the lemon water works...I am all for it!!

I was also looking at an alternative treatment called The One Minute Cure. It uses food grade hydrogen peroxide mixed with distilled water. Anyone heard of this?

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Here we go again 5 years 4 months ago #48636

  • DanC33
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Erica, thanks for the reply. I did look at the Coolibar website and yikes your right about the price. But they do put sunscreen into their products so I might try one of their items just to see if it's actually better.(Sandi have you tried them?) I can't seem to find many items for men that are long sleeves/gloves/cover from the sun ect...that aren't made for winter or dress clothes.

I've been using an SPF 30 from Coppertone, but it seems to not work very well as I still end up with rashes. Plus it smells like a coconut blew up in a chemical factory(!) so I'm ordering the Mineral Fusion spf 40 today.

I must be an odd duck, as I have issues with cold(Reynaud's) the heat(fatigue, joint pain) and the sun (rashes) That's why I'm thinking of moving because we have all of those weather related items here in N. Nevada. I did go to OK and Ark last June and the humidity had me flattened for the first couple weeks...then I did ok with it but it wasn't that hot when I was there only in the upper 70's-low 80's, so I don't know how I'd react if I lived in that climate.

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Here we go again 5 years 4 months ago #48640

  • EmilyK
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Sandi
What is the lemon to water ratio that is working so well for you? Once a day?
Diagnosed Jan 2015 at age 50 with 13,000.

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Here we go again 5 years 4 months ago #48645

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I know that fresh lemons are better, but I just bought the lemon juice that comes in the plastic lemon container for now. I have a 16.9 fl oz bottle of water and squeeze three large squirts into it. I do it once a day. I've been losing weight pretty fast, probably just water weight from steroids.

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Here we go again 4 years 3 months ago #54683

  • Kennan
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Hi Sandi I'm new to this and wasn't quite sure how to get in contact with you but I googled some of my symptoms and your posts came up here! So I registered just so I could chat with you. I have never heard anyone describe the "creepy crawly" and "flu feeling" I have had continuously for 3 years (progressive) as well as you did (in another post? Can't find it now). My joint pain, bladder problems and muscle fatigue also align with yours, and I am currently being treated for Lupus, although my Rheum still seems unsure I have it. I just want to get rid of this fluish feeling that feels like I have the heebie jeebies. You mentioned low ferritine? Do you take iron for that and how much? You seemed to believe it worked. Right now I take 400 mg Plaquenil daily, 1800 mg Gralise (which works well) and 300 mg Tramadol daily. I feel like a druggie constantly but have gone on and off meds and know they are all helping and not hurting from trial and error (also Effexor 75 mg and occasionally clonopin to sleep). I usually function well on this regimen but lately since the weather got warm i am so sick. I wondered if the vitamin supplements would help especially the iron. I get up 2-3 times a night to urinate or sometimes due to the flu feeling. Thanks for any advice and sorry again if I posted on the wrong portion of this site!

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Here we go again 4 years 3 months ago #54686

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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  • Karma: 11
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Kennan:

I'd love to chat with you. Start a new thread though.

All I did was get some ferrous sulfate OTC and I took one every other day. Magnesium Malate also helps a lot with the bladder issues. I'll tell you more in the new thread.

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