Daughter very ill, lung lesion

[stillthe1]

I'm not used to this new format, so I may not be doing the right thing to try and find help quickly for my Linda in Florida. She's been found to have either a “rheumatoid nodule” or carcinoma in her lung.  Today she has pleurisy so severe she can barely take a breath, her SED rate is over 100, her hemoglobin is only 8, and she has a fever.  They first found the spot on her lung a month ago when she had a bad spell of pleurisy, and when they did a chest x-ray today, they said the spot has grown alarmingly. 

I'm not familiar at all with RA that attacks the internal organs. Please help me find information.  I'm one that can't rest until I've researched the problem and then I can sort of deal with it.

She had been on Humira the most recently in addition to finally convincing her doctor to let her start on AP. Prior to that she had been on other of the high-powered immune system suppressors, but each one of them caused her to have severe reactions.  So none of her treatment has been successful in reducing her symptoms much at all.  She was so ill she didn't work for a few months, but her husband isn't supportive of her situation at all, and wanted a divorce, so she dragged herself back to work (she's an R.N.) and now he seems okay with her.  But she's really too sick to be expected to work.

Laretta

[Parisa]

Laretta,

I'm so sorry you are suffering through this with your daughter.  Hopefully, you can get more information soon so you and your daughter can make good decisions.  My husband suffers from pulmonary fibrosis but it sounds quite a bit different from what your daughter has.  If it's not a tumor and more like a nodule could it be more like a granuloma?  If so, you could look into sarcoidosis.  Some sarcoidosis patients have done well with antibiotic protocols (Marshal Protocol). 

You are obviously a caring mother.  Let us know what you find out.  There are quite a few people here that do alot of research so there's a good chance that they'll be able to point you in a good direction no matter what the results of the diagnostic tests.

[Lynne G.SD]

Hi Laretta;
     There is an other possibility here.Has her doctor checked is she might have Sarcoidosis? This is one of the 150 or so rheumatoid diseases and causes growths in the lungs.Sometimes prednisone is used with good results but one can only take that for a short time.Read up on it at http://www.sarcinfo.com  It might be of interest.  Lynne

[ClaudiaMarble Falls]

Larette,

Your daughter is so lucky  to have you.I hope when she feels better she can be encouraged to read THE book and find an AP doctor.

The response to your enquiry should be encouraging and helpful,there are a lot of knowledgeable people reading this bullitin board and offering help.

I am sorry she is not receiving too much help from the husband and the added stress of an RN's job is undescribeable.

My first time with AP was a Rheumatologist and oral Minocin but I quickly realized that his knowledge of antibiotic therapy was limited and biased.I soon found (with the help of this bullitin board)a good doctor and she worked miracles.

Claudia/Marble Falls 

[DragonSlayer]

Hi, Laretta:

Strange presentations of pleurisy are very common in AS, and it is not only related to the disease, but also to the drugs we take.

AS is absolutely due to infection and we are open to it spreading and other lung problems like aspergilloses.  I hope that your daughter resolves her problems soon, but AS takes many years to get a handle on, even once we begin moving in the correct direction (AWAY from most doctors!).

My ESR was >100 many years ago, but recently clocked in at 9; it was a long battle!

Regards,
John

[Michele]

Hi Laretta,

I am so sorry and concerned to hear about your daughter. If only this board could get her husband's ear…it would be chewed to bits. :headbang:

Your info. interests me greatly because I also suffered a lot of rib pain and pleuricy and shortness of breath with my “RA” diagnosis. I also have a lung granuloma.

MP is definitely helping Sarcoid patients. Patients x-rays show clinically the fibrosis clearing. It looks like a complicated protocol, but I find it's not so bad. However, there is a point where people may be too ill to start the protocol to be able to withstand the immunopathology. If she's still able to get to work, that at least shows she is tough and a fighter.

MP is helping me, too. It has controlled my rib pain and pleuricy. I can tell there is die off happening in my lungs and at times my ribs. Predictably so and not out of control. For me, I'm not sure about the “vitamin D” part. But even Rheumatologists recognize a clinical sign of Sarcoid with a disregulation between D25 and D1,25. If she is on prednisone or other immune suppressants, it will skew the D results.

If you or she has any questions, there are people who have recovered using MP that can answer them at curemyth1.com That stands for “Cure My Th1” I am pretty new to the protocol, but will help if you have more questions, PM me.

Bacteriality.com gives a lot of information. If she hasn't seen this site, it may be the best place for her to start.

I pray she finds and/or accepts a way to combat her illness.

God bless,
Michele

[orchid]

stillthe1 –

I'm so sorry to hear about your daughter. I'm not familiar with attacks on internal organs, either, but I'm sure the good people here will be able to help you and answer some questions.

How long ago was she diagnosed? How difficult it must be for her not to have the support of her husband. At least she has a lot of support from you. You can be her “researcher” during this time, since I'm sure she doesn't have the energy or time. Sounds like you're already doing that. Are there any good AP docs in FL?

Hopefully, she can find a good doc that does AP and he can help lead her to recovery.

You and your daughter are in my thoughts…:)

[Rosey UK]

Hi Lareta

so sorry to hear that you daughter is so ill. I think you should look at http://www.miraclemineral.org.

Rosemary

PS you should also read info about serrapeptase. I have just started this treatment myself. and I have also taken the MMS and still do on occasion.

[Jo]

[user=515]orchid[/user] wrote:

stillthe1 –

I'm so sorry to hear about your daughter. I'm not familiar with attacks on internal organs, either, but I'm sure the good people here will be able to help you and answer some questions.

Well, I'm not familiar with anything other than RA, but RA does attack the internal organs.  Mr Perfects illness had attacked the connective tissue in his eyes,  his lungs, and his heart, and even his skin.

 Not in the way that you described though, so I wasn't going to say anything.  But then I thought, well maybe just to acknowledge that yep, internal organs are easy prey for this bacteria when it is tired of a steady diet of joints and wants a little variety.

[stillthe1]

Thanks so very much to all that have replied.  I work full-time and can't spend as much time as I would like writing thanks to everyone and doing more research myself.  I'm going to look into sarcoidosis.

Blessings to all,

Laretta

[stillthe1]

She was diagnosed approx. 18 mos. ago.  The reason I'm vague is because the doctors took so long coming up with their dx.

There are some AP doctors (I don't know how good they are) listed in FL, but much of the time since she was diagnosed, she was either on insurance that dictates who she can go to, or she was not even insured (hubby never put her on his ins).

I hope to learn more soon.

Laretta

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