Can you tell me from experience……..

[Terri9967]

If you have had lung and kidney involvement what treatments did you qualify for? Which treatments are you currently on and are they working?

With my new development of kidney involvement I have no idea which direction to go in now!

Thanks & Hugssss

Terri

[DianeWI]

Hi Terri,

When I started AP, I was so ill.  I felt sick to die.  Doc started me on five days of I.V.s of Clindo.  I took the Minocycline at that time which was pelleted and only 18.00 a month.  I did an I.V. once a week.  One of the things that I noticed improvement on first was the kidney pain started to subside and after 3 months, it was gone.   My lungs have been a huge issue too and I have that pretty well under control.  I do have Zithromax in the house just in case I have a severe reaction.  Reactions can throw me into chronic bronchitis.  I also use Homeopathic Remedies for the lungs.  I purchase the remedies at a local health food store. 

If you can, try the I.V.s'  You will not be sorry.  It jump starts the healing and in my case I really believe it saved my life.

Hugs,

Diane

[JBJBJB]

Diane,

When you did IV, did you see Dr. S in Iowa? You mentioned you did “IV once a week”… this means after 5 days IV, you also did IV once a week? If so, for how long?

I am wondering what kind of remedy you use for your lung? After 16 years on AP, is your raynaud's better?

Sorry about all these questions. I am also in a bad shape right now. I have not started AP yet.

JB

 

[DianeWI]

Hi J B,

My main doc is in Wisconsin Dells, WI, a two 1/2 hr. drive for me.  I went to see Dr. S. for a second opinion about 4 yrs. ago.  I did the I.V.'s for 2 years.  At first I could not raise my arms to drive.  Dr. W. also injected me into the neck and shoulders and spine.  He did what is called neural therapy.

The Raynauds improved while on the I.V.'s but once I quit, it worsened again.  Other symptoms like the kidney pain have remained controlled.  For the Raynauds, I am on Verapamil now and I do Heperin shots daily which helps.

For lungs, I get a combination formula from the health food store.  In the Homeopathic section, there will be formulas that say:  Sore Throat,  Cough, Chest Cold,  etc…. That is what I use but I have to use it at the very first onset of symptoms.  If I wait, then the remedies do not work for me.    I also have Zithromax here.  If the remedies do not get rid of it…I get on the Zithroamx and I have so far, a pretty good outcome and control of it.  Minocin will not touch bronchitis or pneumonia for me.  I have to hit it with the big-guns. 

Another helpful thing for infections for me is this…most lung infections start with a sore throat first.  If the remedy does not get rid of the sore throat, I make a gargle in equal parts of salt, hydrogen peroxide and water.  I gargle, swish and spit out, repeat and the remaining residue in the mouth, I swallow.  That often will get rid of a sore throat so that the infection does not move into the lungs.  It tastes terrible, but it is effective.

When I first started with AP, I could barely get into and out of a car.  I had to be taken to the appointments.  I had to be helped along the way.  I could not even open a door at that time.  I was about 3 months into the I.V.'s when I was able to drive myself and start more of a normal life.  I highly doubt the Minocin alone would have pulled me out of the serious situation that I was in. 

When I saw Dr. S. for a second opinion, he told me that the severe ones need to have a boost of Clindo I.V.'s every six months….a five days in a row regimine.

It has been 16 yrs since I first started.  I also have severe chemical sensitivities which improved some.  I feel that the Marshall Protocol may be more helpful to me now however, doc believes that I have had enough antibiotics in my system and that yeast will be uncontrolable in me, if we go further.  I also probably have more organ damage then most.  So pushing it further could be taking steps backwards too.  Its all a shot in the dark.  I am thankful for being better then I was.

Hope this helps!

Hugs,

Diane

[DianeWI]

One more thing to JB,

I have a huge acid reflux problem.  At this stage of the inflammation game, I have to get my esophagus dilated about 2 x a year.  This is why my AP Doc chooses not to push me further with antibiotics.  He doesn't think that the gut and the esophagus can take more…

Here is what I improved in: walking, hip pain down by 60%.  kidney pain gone,  lung infections improved and controlled, swollen finger from Raynauds is gone, lower back pain better, ankle and foot pain better, knees better, sensitivity to light better, headaches for the most part better, chemical sensitivities better, neck and shoulder pain better.

At my worst…I was down in bed and hubby and my daughters have to move me and put me on a bedpan.  I was in bed for 3 months like that.  I never ever thought I would see improvement from that place.  I'm not in remission but I thank God for being better.

Diane

[JBJBJB]

Diane,

It's really encouraging to see how much improvement you have had. My symptoms are very much like yours. I could not get out of the bed. I could hardly walk, not mention to lift things. My muscles in my upper arms, shoulders, hands and legs were useless. After the doctor put me on prednisone, I could move around a little. One day I was so thirsty, I bought a bottle of juice. I had to ask one of the customer to open it for me.  I am on 400 mg plaquenil and 5 mg prednison now. I am doing well with my muscles, except my fingers are still pretty swelling. My ESR is down to 26 from 89.

My esophagus is also affected. I have acid reflux. I don't have problem swallow, pray I won't have it. I also have very hoarse voice.

I am going to see Dr. S in 10 days. Please pray a safe trip for us as we are driving 10 hours to see him. This is the first time we leave our kids home with other friends. Emotionally it's very hard for me. But my kids are so excited and they “can't wait” for mom and dad to go away.

:JB

  

[Anonymous]

Diane: I will pray for a safe trip for you out to Dr. S. Also that you can feel better soon after the AP begins. I know how hard it is for you to leave your children, they will probably have a good time with friends. It is very exciting you are going on the AP with Dr. S, this is a good thing!!! lindak

[JBJBJB]

Thank you so much, Lindak! I really appreciate your prayers for me and my family.

I have a quick question for Diane or any one about acid reflux. I've been taking Protonix for acide reflux. I heard it helps to control pulmonary fibrosis when acid reflux is under the control. I know by taking the med alone won't be effective, is there any effective rememdy you use to help with acid reflux?

Thank you,

JB

[DianeWI]

HI JB,

I take the Protonix too.  It helps some. 

Please let us know what happens at the doc.  I hope tht he starts you out on the I.V.'s .  You are severe and you need the jump-start.

Hugs,

diane

[superperroRA]

JB, even though I have RA, I strongly recommend that you take the protonics every day(either prosilec (available over the counter), or prevacid or nexium).

I find that because I spend more time lying down,
I get more acid reflux,
which exacerbates my RA,
which makes me spend more time lying down,
which gives me more acid reflux,
which exacerbates my Ra,
which makes me lie down more…
It's a very dangerous vicious cycle that can be avoided simply by taking the protonics every day

[JBJBJB]

[user=26]superperro(RA)[/user] wrote:

It's a very dangerous vicious cycle that can be avoided simply by taking the protonics every day

I agree with you totally. I am in this vicioius hole like you. You said Protonics. Is this the same as Protonix I am taking?

 

[superperroRA]

These medicines are called in general Proton Pump Inhibitors
http://en.wikipedia.org/wiki/Proton_pump_inhibitor
I just shorten it to “protonics”. As you can see from the wikipedia article, Protonix is one particular brand. Note that Prilosec is available without a prescription.

[DianeWI]

Hi JB,

When I get severe where I can't eat…I drink aloe-vera gel, papaya juice and water in equal parts.  I sip on it and it soothes the inflammation and swelling.  I don't drink it daily because it can add to the yeast issues that I have.   Hopefully, you won't get as severe as me. 

Please let us know how the doc appointment goes….

Diane

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