Samigurl- lesions on organs and spine

[CindyinMN]

Hi Samigirl, we were talking about lesions and cysts and you asked about my meds. Sorry I didn't reply sooner.
I wanted to let you know that although my ID dr. "still thinks it is in the bone or muscle," I have not been on antifungals since the end of May. I was on diflucan 400mg for 2 months. My origianal ID took me off. At my last CT in August I only had two small nodules left. The other prior CT's had showed innumerable nodules. They recommended doing another one in March 2010. Since then I have seen 2 other ID's who both said I don't have VF because my test is always negative. My current ID says she is very sure this is chronic VF and thinks it is still in my body but wants to "find it" so she can do a biopsy. She thinks I am doing well enough without meds and says my body is doing an excellent job fighting it off. I will have a bone scan in 1-2 weeks and try to find where it is. I have alot of aches and pains but I am very thankful to be functioning. My husband encourages me alot to keep me from freaking out about it all the time. I don't like being off the meds and yet I don't want to be on them if I'm doing well enough. I am one who doesn't like to take an advil. But I do understand how serious this is and want to keep it under control! My motto is Never, Never, Never give up!
Thanks for listening,t
Cindy

[Marcus]

Not to cause you to freakout, but your condition sound very much like my own during the early stages of my VF in 1992. (see my latest post). In my case, the lesions to my thoracic spine were disctructive, erroding 2 vertebrea in my back, I had to have reconstructive surgery because it took so long for the Doctors to relalize what I had.

No need to panic, just follow the Dr's orders. She sounds like she knows what she doing for sure so keep the faith.

[CindyinMN]

Thanks for your reply, Since I wrote last I had a bone scan that came back with mild scoleosis. No one seems concerned about that. My ID dr. said she can't help me with my problems of fatigue, ear/head pressure, muscle aches, stiff neck, leg pain, sore back. She doesn't think they are related since nothing showed up on the indium scan or the bone scan. My indium scan showed what appears to be dialated blood vessels throughout my entire spine.
She now thinks its all related to GERD??? She basically dismissed me. I had an endoscopy and it showed nothing but some stomach bile. No irritation or damage. (THANK GOODNESS)
My family doctor first perscribed anti-depressants which I stopped taking once I knew it wasn't a tumor- told her I'm now frustrated not depressed!
Then prilosec and no improvement with any of my symptoms. Also perscribed neurotin to see if the pain is nerve related, then when there was no improvement now wants me to take muscle relaxants?
I also had blood in my urine at my check up last week. But my family dr. is not concerned- I had to remind her that since my bout with cocci in March I have had 2 kidney infections, 2 urinary infections, a kidney cyst, and a kidney stone! She said if I am concerned she will retake the test in a few weeks. Wow ! I am so sick and tired of being sick and tired! I guess I'll just wait around and see what else happens and then deal with it. Any input would be much appreciated.
Thanks, Cindy

[Angie]

Hi Cindy
I'm really not sure why most Md's don't think all of our symptoms are related, especially if we were healthy and sane before being afflicted with VF. My Infectious Disease Md has sent me to all kinds of specialists. The pressure, fluid and noise in my ears as well as the greenish/yellowish sometimes tinged with blood mucus in my nose is terrible, yet, CT scans show nothing abnormal, so the EarNoseThroat Md said there's nothing he can do for me.
The shaking of my hands and jerk movements were also dismissed as not neurological but possibly being caused by the anti-depressants, according to the Neurologist.
I was diagnosed with frozen shoulder several months ago and finally I heard a specialist say that he believed it was related to the VF.
So you see you are definitely not alone in this. Doctors just don't get it!!!
My husband refuses to take me to some of these appointments since like he said it is a waste of time and money.
My Infectious Disease Md does think that all of my symptoms are VF related. All of my blood work has come back with no trace of cocci, yet she said that the cocci has done quite a number on my body that it is just a matter of time and I need to be patient.
I was also prescribed an anti-depressant by her and boy did I need it. At this time I have stopped taking it because I think I have finally accepted that this is the way it is FOR NOW, just really angry at times.
The muscle/joint pain is pretty debilitating. If I do venture out of my house it can not be for very long. I pay the price each and every time.
Hang in there
You are not alone
Praying for us all
Angie

[CindyinMN]

Marcus and Angie,
Thanks for your replys! My ID office nurse returned my call today. They don't need to see me anymore. They say the ear pressure and stiff neck is not related. They say the bone scan was fine so I am fine. They say lots of people have cysts and lesions on there kidneys and spine. They say the back pain is unrelated. They say the scan would have found cocci.I know they think I'm crazy. They told me to go to the Mayo if I have further questions. Of course I can't just go to the Mayo because of insurance so I will wait. I am having a strange lump on my tongue removed today and will ask them to biopy that. And I will just keep praying! Marcus how long did it take for them to find it in the spine? Thanks, Cindy

[Budster]

[kat]

Cindy,

I don't want to scare you needlessly but the stiff neck is definitely a reason to be worried. Especially along with the lesions. I would be looking for another doctor. One who will talk with Dr. Galgiani at VFCE.

If I were you, I would call Dr. Pappagianis. He has been willing to talk with other people on this message board. He is at UC Davis. He does not treat patients but he is the expert on VF at UC Davis. This is the last phone number I have for him: 550-752-3391. He might be able to answer many of your questions and concerns.

Please listen to your body. It is telling you things that the doctors don't even know about. Keep looking for answers to your questions. Answers from people who are knowledgeable on this disease.
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God Bless you and keep you,
Kathy

[Glenda]

Hi Cindy,

I haven't been on here for a few months, but i just came across your post here, and it sure hit home. Sounds identical to my symptoms and problems with doctors who think it's no big deal!
I don't know if you have read any of my latest posts about lesions on my spine, liver, and kidney, but i have also been told by my docs that many poeple have cysts and lesions, and they are not concerned in the least about them. I also have had terrible ear and head pressure and headaches, and a swishing noise behind my left ear. I went to an ENT doc and he said my ears lookied fine.
I have had VF for 3 years now. I have been told I have the chronic form. My titres are <2, but I have been so sick. The pain in my back and shoulders is just unbearable some days. I have been denied disability twice now, and have had to get a lawyer to try and appeal the decision in court. I am positive that the lesions on my spine are from the VF. They say that they can't biopsy them without "cracking me open from the chest" and that the risk is not worth it.
I, like you, am so tired of being sick and tired! Now on top of all this, we have to move, due to our home being forclosed upon because of me being unable to work. I know the stress of all this is really making me feel terrible again.
I guess I just want to say that it helps to know I am not alone in this awful battle and that we are not crazy!

Best of luck,
Glenda

[amurbach]

HI,
I keep having reoccuring sinus infections and upper respiratory infections as well as rashes, stiffness in my neck, tiredness and now jaw problems. I am not one to run to the doctor everytime I get sick but recently I am so paranoid about the Valley Fever spreading that I've been better about calling my doctor with questions. I was diagnosed in March last year and got much better during the summer but then I got what I thought was one cold after another.., Now I have this sinus infection that has lasted a month now and I am not sure if my itchy eyes are from that or pinkeye or VF. When my doctor asked me what my symptoms were I gave him such a long list that he probably thinks I am crazy. It is frustrating because I feel like you have to go to several specialists to get answers about your skin, then your glands, then your jaw.... The last time I contacted an ID specialist they told me that I had to be referred.

[Carol Ann]

I hope this get's to the lady in Whittman who is loosing her home. I live in Apache Junction and we are also loosing our home. I just found out I have what they are calling a "mass" in or on my kidney. I get results back on Monday,and of course they say it can not be VF........I know better and would love to talk to others that have had kidney's involved.
Many of us are on the Facebook ValleyFeverSurvivor site. That is a wonderful place to talk back and forth to eachother.
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I have just be told I have Valley Fever.
Where would the nearest support group be to Apache Junction/Gold Canyon?
now this is wrong!!
Carol

[amurbach]

I have mild sclerosis too. My back aches alot also and I didn't have this problem before I was diagnosed. I keep having unexplained rashes and a bout with strep throat that I've never experienced like this before. In addition, I had a severe sinus infection and developed allergy problems. I was tested positive for several allergens in February this year after suffering from severely red/itchy eyes and congestion. Prior to my diagnosis, I didn't have issues with any of this stuff and I had much more energy. It is frustrating because people just think I am super paranoid and discount what I say including the doctors. Every time I go to my primary with something new I ask him if it is related to VF in any way and he says no without even blinking an eye. I really wasn't a person who visited the doctor often except for prenatal visits when I was pregnant and as a matter of fact the first time I ever took antibiotics was when I got really sick and was diagnosed with VF so it is all new to me. I just can't help but think what else... It's hard to keep going back to see the doctor just to get prescribed antibiotics all of the time with no real answers especially with my healthcare benefits going up. Well I am done complaining now.
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Where there is a will there is a way!