For Everyone with Disseminated Cocci . . .

[Robin Smith]

Tony,

I want to make sure you're aware that even though you haven't manifested neurological symptoms so far, it does not preclude the possibility that VF has/will disseminate to your nervous system (brain/spinal fluid). This condition is 100% lethal if left untreated and is often lethal or debilitating if treated too late.

Receiving regular (3 month) LP's (lumbar punctures) is my sincere advice to anyone who has had VF spread beyond their bloodstream (the primary level of VF infection). When cocci affects/infects other parts of the body (dissemination) it becomes a secondary infection and is unlimited in its capacity to infect all other parts and organs of your body, including your brain/spinal fluid (very deadly). Please forgive me if any of this is elementary to you.

Disseminated cocci is clearly your condition in that your skin has already tested positive for VF. The following might help to relay just how serious this condition can be: I was told later by my Drs (after coming out of my first coma), that my odds of surviving the ordeal were 1/10th of 1%. (0.001) which in my mind constitutes a miracle and one that I am very grateful for (I still struggle with the question of why I was spared). Many prayers, by many very faithful people went up for me during that 3 week near death experience in ICU. Unfortunately, this was not my last coma and I was to be blessed again with more miracles several times to follow.

Please don't push your luck (blessings) because miracles are rare and I have been incredibly (unbelievably) fortunate. The experiences that I speak of are not that far fetched and really happened to me.

Please know this: Waiting for neurological symptoms to appear before being tested via lumbar puncture is like waiting to hear the boom before stepping away from a ticking bomb.

Robin

[worried]

Robin:
I appreciate your advice, but I am terrified of get an LP. I had one about 20 years ago and could not walk and was in severe pain after. I had to go to physical therapy for almost a year. Of course the doctor nor the hospital would tell me what happened. I talked to a neurologist and he said the the doctor may have hit a nerve while performing the procedure. Is there any other way to check on theis besides LPs? Thanks again. Sorry to ask you so many questions but I am trying to learn as much as possible.

[Angie]

Sorry to tell you that Robin is right....... a LP is the only way to test for cocci in the spinal fluid, (cocci-meningitis). I have had 3 and the first one, which turned out I had cocci-meningitis caused me to have a spinal headache which landed me in the hospital where they patched up the spinal leak. The next 2 went great with no problems and no cocci in my spinal fluid. Of course my Md was a bit more careful due to the problem I experienced with the first. He used a childs needle and even though the process took much longer he felt much better knowing that I wouldn't have a problem. Yes, I did have the same Md perform all of them.
If you are going to have it done make sure you inform the Md of your previous problems and ask if they can use a childs needle.
It truly is better to have a LP and know the results than to wait until it is too late.
I will be having another one done within the next 2 months just to make sure there's still no cocci.
Take care
Angie

[worried]

LPs do not have to be done in every case do they? I am hoping the medication is going to kick in. I hope I am going to be one of the lucky ones that recovers quickly. AZ should really warn people about this disease I never heard anything about it until after I got sick. I would have been more careful where I hiked and the places that I visited. The exhaustion is really hard on me. I can't work until my doctor releases me, which is causing problems at work. My coworkers think I am faking this or malingering. I am so broke from all of this I would go back tomorrow if I knew I wouldn't pass out from exhaustion.

[kat]

It makes me soooo MAD when people, who do not know a thing about VF, make judgments about the ones who suffer from it! Anyone who has VF would gladly trade places with those uncaring, ignorant people. They need to learn something about it before they judge you. Sorry to rant, but that is one of my pet peeves. They need to take heed to what you are going through. They could be next.

LP's do not need to be done in every case but if there are any signs at all that you might have cocci meningitis or disseminated cocci, it is imperative to know about it. My brother died because he was misdiagnosed for so long and even then he was not given an LP until he was transferred to a rehab hospital. The first thing the doctor there noticed was how stiff his neck was. I asked the first doctor on two different occasions if he could have cocci meningitis. She said no, it didn't show up in the MRI. Of course it didn't show up in the MRI! It can only be detected by an LP. Better safe than sorry.
_________________
God Bless you and keep you,
Kathy

[Robin Smith]

Dear Worried,

I can fully understand and empathize with your concerns about LP's (lumbar punctures or spinal taps). They're no walk in the park, for sure. Then again, I've always found that the thought of them is far worse than the actual experience.

Please rest assured that your experience (hitting a nerve) is incredibly unlikely to happen again. As for the severe headache that you experienced; it happened because the pressure of the fluid in your spinal canal and brain fluid was reduced by a small percentage. This factor is similar to blood pressure and can be measured in much the same way. We are talking about some very vital and sensitive tissues that are subjective to incredibly subtle changes in pressure that can be measured in terms of a few cubic centimeters (CC's). Lumbar punctures remove as few 5 CC's of CSF but that can be enough to cause a painful experience.

There are a few simple things that you can do to prevent a re-occurance. After an LP is performed, lay flat on your back and absolutely still for at least 45 minutes in a darkened room (an iPod helps here). This gives your cerebral spinal fluid (CSF) a chance to equalize. Movement and standing upright too soon precludes your CSF from adjusting to the change in pressure and may result in the pain that you experienced.

I've had countless LP's and having followed these rules, have never had a bad experience. Well, I take that back. There was the one time at a teaching hospital when an intern performed a two hour LP on me because she couldn't get it right. It took countless punctures and still wasn't succsessful. I tried to be a sport and to be patient with her inexperience but finally called her off when I couldn't take anymore (sorry, I digress).

It's important for you to understand that LP's and the subsequent testing of your CSF for cocci is the singular method of determining if your VF infection has disseminated to your brain/spinal fluid (cocci-meningitis). As I've said here many times, cocci-meningitis is 100% lethal if left untreated and is usually lethal or debilitating if not treated soon enough.

I'm incredibly fortunate (Blessed) to have survived my ordeal(s). They came in the form of many comas in ICU on life support, three years in the hospital, and finally ending up in a wheelchair which was the best of all possible outcomes. Nothing short of a string of Miracles has left me alive to write this to you today. None of this would have been necessary had LP's been done sooner.

Robin

[worried]

Robin
I had my biopsy and bronchoscopy Friday at John C. LIncoln . Slept for about twenty hours after. Still really exhausted. Should get the results Monday. I still have not got any reply about a support group here. I just am looking for someone to talk to who has been through this. I need to make a decission fast about where to do my doc program. Do you know if San Antonio would be safe? Is there a high incidence of VF there or is the climate okay for people suffering from it? The fatigue is so frustrating, I want to sleep so much. I am sure it is not depression or anything else. I just get exhausted doing the littlest thing. Have you heard if vitamin B12 shots are beneficial? I need something to give me a boost. IF you or anyone else has any sugestions please let me know.
Thanks
mary

[kat]

worried,

Hi Mary. There is a VFS Support Group in the Glendale/Phoenix area. Linda Evins is the Director and also a VF survivor. Her email address is: coccifever@cox.net.
_________________
God Bless you and keep you,
Kathy

[Robin Smith]

Dear Worried,

We haven't heard from you in a while. Just wondering how you are doing and what you decided to do concerning your treatment.

Robin

[matilda]

I recently had a bone scan and my results were negative. My Dr said that If I had menigitis that my spinal cord would be highlighted as a hot spot or if it had spread to my bones as well. After reading all these posts I'm not so sure of that. I am having lots lower back pain, right ankle pain, and pain in my left jaw. I work for a dentist and It was confrimed that I don't have a TMJ disorder. Do you think I should still have a LP?

[kat]

Yes. The ONLY way to find out if you have cocci meningitis is through a lumbar puncture. The doctor treating my brother in the first hospital misdiagnosed him twice because she thought it would show up in a MRI. We found out too late that the only way to know is through a lumbar puncture. I don't know if a bone scan shows VF if it is in the bones or not. But for meningitis you MUST have a lumbar puncture.
_________________
God Bless you and keep you,
Kathy

[Robin Smith]

Matilda,

If you've been with us for awhile, you might think that Kathy and I get some sort of commission for every lumbar puncture that is performed :)

Of course, that isn't true. What is true is that Kathy and I have real world experience in this. Had LP's been done sooner, Kathy's brother Max might still be with us and I would not have come close to dying many times myself. I would probably not be in a wheelchair either.

The following advice applies to anyone with valley fever: LP's at three month intervals is highly recommended to continuously rule out cocci-meningitis.

Robin