Searching for years, not giving up !

Hello all! Im Wanda and Im an advocate for my hubby, who went from perfect health to progressive decline starting 2003, we have been married 27 years and still adding on. 3 kids (2 grown) 1 dog, 2 cats.

Im learning how to navigate this site and post, so please forgive me as I learn. Im not sure if I will find hope here, any input is appreciated!

2003 he started with flu like illness extreme fatigue few small bite? on chest, fever, which developed in to what appeared to be hives? Doctor said hive, stress...xanax!, prednisone does pack...Prednisone did nothing, Next doc drew blood for lymes etc. put hubby on Doxyi for 10 days...

Rash around bite area spread across chest spotty irreg shape raised edges moved up to scalp, face, painful fevered areas with no hair loss. Doc said boarder line Ericholsis but still felt it was anxiety, hives, more prednisone does pack, xanax, rest etc.

Rash started to follow pattern, cycling every 12 days aprox, severe fatigue, fevers at night, rashing continuing to spread downward to arms, painful skin and generalized pain as if flu. Went to rheumatologist he had no answers, Dermatologist scratching head ? Discoid lupus?, Medical doc scratching head anxiety, stress more xanax.

Center for disease control tested again for Ericholosis test not conclusive. We went to infectious disease doc, Baronella (cat scratch disease) more antibioticsi and prenisone, condition continued to cycle exactly as it had been with rash continuing to spread slowly down body and becoming more angry, pain spread, skin and generalized body, ended up on Doxy. 100 mg twice daily and prednisone tapered to 10 mg daily for aprox year during year he had periods when he tried to return to work but relapsed many times 2005.

2006 Infectious disease said I dont know sent he back to med doc. who ask me what do you want me to do next (I a nurse) he said its out of capabilities to treat. I ask him to send us to Duke Hosp.

2007 several doctors saw us at one time, looked at rash over most of body, sent him for biopsy of inflamed ears which dermatologist was certain it was relapsing polychondritis and sent us home. We went back 5 hour drive and on this visit Doc said biopsy was not conclusive but I think its still relapsing polychondritis and started him on methotrexate inj. with prednisone.

2008 filed for disability, rashes remission, pain, severe fatigue cant get out of bed till lunch moving slow, resp. symptoms, sinus problemsi continiously, rash resumed after aprox 5 months. Bad reaction to Arave.

I told doc last week about this site and that I have felt all along it has been an invasion by a parasite of some sort because of the cycling as if it is a life cycle of an organism of some sort. He scatched head and put him back on Doxy for 30days and said lets see if this helps if it does we will try infectious disease again?

His mom passed at 62 with a very slow progressive MS.

Do any of you think Im on the right track....Ive been searching for years now...cant stand to see him in pain, cant give up...

Sorry for this long post!

Comments

God bless you Wanda for

God bless you Wanda for helping your Hubby!

It is hard to give any advise not being a specialist, but I can tell you my trick for the sinus that has made me recover half of my life:  the silver sinus colloidal spay, plus washing my nose with the warm water and salt!  Cleaning is a way of getting rid of what ever problem is there, right? Plus the silver helps controlling the fungui and it looks like in this way it controls the bacteria too.  I notice it doesn't totally exterminate it and because I was feeling so much better I stop using it  and had a big  relapse. 

The best thing that you are doing is caring and researching, and for sure you are going to find the answers that you are looking for.  Our big sympathy for you and your beloved one.  Yes there is light!

Question, have the Doctors given you anything to treat his skin directly? like antibacterial creams, or even iodine to clean it?  there must be nice products to help him at least with the pain... so sorry!

Keep up that amazing job, God Bless you all!

 

Maria P. 

God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

Thanks for the quick

Thanks for the quick responses!, right now I just trying to gather as much information as possible to begin this journey, hope I can get m hubby on board...he's sooo tired of it all....

But Im a pushing force....(can be kinda pushie at times Im told LOL).

Thank you all, I may need a listening ear as I learn...

Thanks! Iv told him we dont need to cover up the sysptoms we need to treat them....

 Mono 1984, samonella 1985,Hives? flu like symptoms 2003 relapsing, Boarder line erichilosis 2004, discoid lupus 2004, chronic catscratch disease 2005, relapsing polychondritis 2007, HTN, Anxiety, Depression, pain issues, Mother has MS. Chronic rash, seve

Welcome Wanda.  Learn as

Welcome Wanda.  Learn as much as you can from this pioneering website.  The tabs at the top of the page will bring you to a wealth of free and science based information.   Your husband is fortunate in that you will be able to absorb the information and look at his situation and compare.  I hope you both find help here as I have.

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hey there Wanda,there are

Hey there Wanda,

there are many caregivers here on this site as well that can offer up a little support for you as well while you are managing your husband.  Please don't give up.  Many of us have a cornucopia of sxi & are clawing our way back to health.

It is not surprising that the testing you have had is inconclusive as time will tell, our tests are not adequate for many illnesses.  They will improve over time.  In the meantime, we must do what we must to make ourselves better.

We are in a fight for our lives here, do what you have to!  Many docs just don't understand the life cycles of bacteria & many think they can be eradicated with a 10 day cycle of doxyi.  Unfortunately, this is not the case.

Follow the protocol religiously if you can.  Proceed slowly & expect the unexpected.

Blessings for your wellness journey

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Hi Wanda, Welcome to the

Hi Wanda,

Welcome to the site.   You are in good company here, many of us have found this site to be the last stage on a long search for hope and health improvement.   Your husband displays a strange collection of symptom, but then most of us have a collection of diverse symptoms even if many of us have symtpoms in common: synusitis, thyroiditis, asthmai, rashes and skin symptoms.

If you have not done so already I suggest you read the Getting Started module Blue Tab at the top of the page.  There is a page< there that will list a number of diseases associated with Cpni and also leads you to a fuller explanation of these associations. 

A simple test for Cpn (not an absolute test but a good indicator) is taking NACi (see getting started module for more detail)  This harmless supplement may cause sneezing and runny nose, sometimes flu like symptoms, in people suffering from a Cpn infection.   It is also suppotive to the liver.

You are at the start of a healing process that will at times be difficult but gives hope and some understanding of the condition that your husband is suffering from. 

The  

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Hi WANDA, So glad to see

Hi WANDA,

So glad to see you here for your dear hubby.  Yes, I believe you've found the right place.  I feel as if I wasted the past 4 yrs of my life on another protocol that weakened my already weakened immunei system but I'm back on track now with the help of these good folks and the medical Drs and researchers that fringe this site.  

I'm sure there will be folks with more input and knowledge coming by soon.  Hang in there and as another friend of mine says, "no giving up"!  Wink

If you haven't already done so, just click on the tabs on the top portion of the main web page for links to the charts of the variations of the CAPs (combination antibiotic protocolsi) and the supplementsi that will help support and even begin to heal and support the immune system while your hubby heals.  

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!