my story

[Eva Holloway]

Kim, Maz, Lynnie.

I have written my story and a friend is doing the spell check and correct sentence structure for me. I sometimes use odd phrasings because English is my second language.

When I get it back how do I put it on the Road Back Foundation Bulletin Board?

Eva

Eva Holloway

[Maz]

Hi Eva,

To post your Personal Progress Thread, just go to this link and hit the New Topic button at the top right of the discussion threads, as you have done here in the General Discussion area:

http://www.rbfbb.org/view_forum.php?id=3

After opening a new topic thread, a box will appear to type your message. Just cut and paste your story into the box after you add a title in the subject header to identify the thread as yours (e.g. “Eva's Story”), like you do when you're creating a new post and then click the send button.

Looking forward to reading what you have written thus far, Eva. You can add to your own thread any time you want to, but no one else will be able to comment on it. It is your personal diary, so to speak. Also, only registered users can see these threads, so they are are not visible to casual readers.

If you have any trouble doing this, let us know and will try to explain how to do this differently for you.

Peace, Maz

[lynnie_sydney]

Great news Eva, looking forward to it. Just to add to what Maz has said, if you are cutting and pasting from a Word document, you may need to make the type smaller on the forum – it tends to translate into a huge typeface. Alternatively, you could reduce the size of the font (to about 8 or 9 point) before cutting and pasting. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Eva Holloway]

Thanks,

it's up now, hope it looks okay.

Eva

Eva Holloway

[Maz]

Eva, just read your newly added Progress Thread and want to thank you for taking the time to write everything in such detail. What a journey you have had over the years! You are one very amazing woman with a lot of strength and conviction and I hope with you that 2009 will be your remission year – you certainly deserve it after all you have been through.

When you've reached remission, we'd love to have your story added to the testimonials on the main site…you're already almost there with what you've written to date!!! 😀

I was interested to read that you felt a bladder infection was the trigger for your RA. You may already be aware of this, but a researcher by the name of Alan Ebringer has linked an organism called Proteus Mirabilis (causes UTI infections) very strongly to RA. Seems its one of the strong contenders, anyway, in one's total pathogen load. You'll find a summary of one of his studies on this organism in last summer's RBF eBulletin:

https://www.roadback.org/EmailBlasts/ebulletin_summer08.html

Peace, Maz

[Eva Holloway]

Maz,

I did not get sick until I had the bladder infections. I never had a bladder infection before, I actually thought I was starting to have some urinary incontency coming on.:crying:. After a few days I went to the doctor and he told me that this was one of the worst bladder infections he had seen. So for at least a week or more those nasty little things circulated in my blood stream and then they came back again four weeks after I had finished the antibiotics. This is when he gave me more antibiotics and another medication to clean the lining of my bladder.

The link is very interesting, I printed it out and I am asking Dr. K next week if their is a chance to get tested. Just one more thing to follow up on, but it may help Dr. K to work more closely on my problem. See it is always good to put the whole story out.

Thank you so much.

Regards,

Eva

Eva Holloway

[lynnie_sydney]

Eva – what a story! Thank you so much for writing it down in so much detail. I, too, look forward to your remission one in the near future!

Maz – thanks for that link! Do you know what the abx protocol is to treat the  [/color]

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Eva Holloway]

Lynnie,

 this is what I found on the internet,

Eva

[align=left]Proteus Infection

Proteus can cause urinary tract infections and hospital-acquired infections. Proteus is unique, however, because it is highly motile and does not form regular colonies. Instead, Proteus forms what are known as “swarming colonies” when plated on non-inhibitory media. The most important member of this genus is considered to be P.mirabilis, a cause of wound and urinary tract infections. Fortunately, most strains of P. mirabilis are sensitive to ampicillin and cephalosporins. Unlike its relative, P. vulgaris is not sensitive to these antibiotics. However, this organism is isolated less often in the laboratory and usually only targets immunosuppressed individuals. P. mirabilis and P. vulgaris can be differentiated by an indole test for which only P. vulgaris tests positive. [/align]

Eva Holloway

[Maz]

[user=30]lynnie_sydney[/user] wrote:

Do you know what the abx protocol is to treat the  [/color]

Lynnie and Eva, the best person to contact regarding Proteus Mirabilis and Alan Ebringer's work is “Dragonslayer” (aka John) who is a register user here. He has been in contact with this researcher and has compiled all of his research on this, which may well include Ebringer's recommendations for which antibiotics are best to be used here. Hopefully Dragonslayer is still around, but if you PM him, he will get a notification in his email that he has a message waiting. Or you can search his old posts, because there was a thread where he kindly offered to send Ebringer's work to anyone who requested it.

Hope this helps in your searches!

Peace, Maz

[lynnie_sydney]

Thanks Eva, Maz. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Parisa]

Eva,

About 8 months into my husband's illness (before AP) he was on an upward swing doing better and the pulmonologist suggested the pneumonia vaccine.  It caused pneumonia in my husband also.

By the way, if ( and I know that's a big if) you can find a rheumatologist or neurologist that will prescribe IVIG you should qualify for it as you didn't respond to the chemo drugs.  My husband has done really well with IVIG and it has helped him regain muscle strength and I think rebalance his immune system. My husband's rheumatologist used Crescent Healthcare, an infusion company, to get the IVIG authorized.  It's very expensive and the infusion company makes quite a bit of money so it's in their interest to get patients authorized.  Coram is another infusion company that does IVIG.

[Eva Holloway]

Parisa,

I have a friend that took MXT and Enbrel, now she has lung problem. I told her not to let the doctor talk her into the pneumonia shot.

I have thought about the IVIG, but right now I want to see what the new meds are doing for me. Starting to walk more upright and have more strength. So for about six months I want this medication to work. Also I am now on brand name Minocin.

Thank you for the info, and isn't it weird what the doctor try to do to us.

Eva

Eva Holloway

[Eva Holloway]

Maz,

I send a PM to the Dragonslayer. I know I have talked to him before. Maybe he will answer back.

Eva

Eva Holloway

[Parisa]

Eva,

Just wanted you to know that IVIG was  a possible Ace in your back pocket.

I can't imagine you trying to type with those poor fingers especially if they were/are anything like my husband's.  Amazing (and sad too) what you can do isn't it?

[Eva Holloway]

Parisa,

I have been using Manuka honey hand lotion and I mix it with a little Vaseline, E and Aloe. I wear cotton cloves most of the time, but some days my hands are on fire and I know I have written here about this before. I can not use the steroid lotions they gave me, made the problem worse. Then when I had been put on cumidin my hands turned almost purple.

I also use chlorine free water for my shower and after I finish washing with the soap I use LOC (liquid organic cleanser) from Amway. It has coconut oil in it and that helps not to mess up my hands too much. I have to be very careful what I use. I guess you know that from your husband.:(. I have about eleven different lotions that I use. It seems after awhile the lotion doesn work well so I switch or I combine some until they don't work anymore. I told my hubby I have to quit buying them, but he just smiles, he knows better. LOL:):roll-laugh:

I have been working on a book and I type sometimes with just three finger. The thumb and next finger to it are the worst, don't know why. I bought some rubber gloves because the latex are not good for me. When I put lotion on my feet, every day, I use gloves. Doing the dishes I also wear gloves and throw them away after two days.:D

Take care,

Eva

 

Eva Holloway

[Author]

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