Too many things wrong...

[mojogal]

Hi, Happy New Year.
I have not been on here for a long time because I have felts so bad. I am very curious to ask if anyone else has been diagnosed with Lupus, Vasculitis, or Hemochromotosis?  I was on one of my other support groups and I was shocked to see that the majority of folks have those also.  The vaculitis must be in my brain, I have no short term memory at all, I have the Lyme Blindness and I must walk with a cane because I have such balance problems, I was walking my dog 2 months ago, lost my balance and went head first down this steep embankment, to steep to be called a hill. I now have 3 herniated discs because of that fall. Here's hoping to a healthier New Year for everyone.

[JackieCalifornia]

'Congratulations' is not the right thing to say, but I am glad you have a diagnosis.  For me, finding a diagnosis was the hardest part of being sick, and from there it only got better once I knew what it was and started working to get rid of it.  I had some periods of feeling worse as the bugz die off, but never as bad as being sick without treatment.

Diagnosis is the first step to getting well, so you're on your way now.  Sending you hugs and all good wishes -- stay in touch, let us know how you do, okay?  

[mojogal]

I finally got a Lyme diagnosis after being told I had, lupus, hemochromotis, vasculitis, fibroymyalgia. It took an LLMD to find it and he did. It is not going to be easy but at least I feel I am in the right hands.

[AllergyNerd]

I think that I contracted my lyme in Texas (all my probs started this past august).  I was finally diagnosed late Nov and travelled far to see a LLMD.  Now I'm on more doxy and also zith.  This week hasn't been so good.  I hope you get your answers!  Isn't it horrible how much a conspiracy lyme seems to be?!  I had no idea before all of my research the past few months.  If I hadn't of asked my dr. to test me for lyme, I would've gone the rest of my life with no answers and would've gotten worse, so scary.

[mojogal]

Thanks for that info I had no idea of all of that. My veins are so small and collapse, so my hematologist had a pic line put in. The problem was they never cleaned the pic line, I told them they had to but they said no so I called the place where I got it put in and they called the doctor and gave them a few choice words and then they started to clean them, however it was too late for me, mine got infected and had to be taken out. After two blood letting, my Ferritin levels came down to normal. Hope its stays that way. I was finally diagnosed with Lyme after I found the one and only LLMD in San Antonio. I was called by a  Doctor in Houston who has Lyme himself, and Lyme is like a dirty word here, nobody can be labeled as treating Lyme or else they will be arrested, I feel like its a secret society and we are all underground.
Anyway, I am going to post the group about what this doc I saw thurs found out and see if anyone else had it or not. He put me on doxy for now, he took 12 vials of blood, I need some MRI's and then he is going to figure out a plan for me.
I hope you are having a happy and healthier New Year

[JackieCalifornia]

Wow!  Thanks for the data -- I did not know that.

Hope you're doing all right in your Lyme-or-not quest.  Happy 2012!

[dolfnlvr]

Hey--Hemochromatosis is a fascinating, and fairly easy to "treat" ailment.  It has its origins (genetically) in the time of the great plagues especially the fourteenth century bubonic plague.  While you tend to sequester iron in your blood, the immune cells called macrophages (also in the blood) tend to have LESS than the nonheochromatic population.  THis makes your macrophages (immune cells) particularly effective against infection--basically they are immune cells on steroids.  During the fourteenth century, those with hemochromatosis were nearly 3X more likely to survive infection with Y. Pestis (plague) and go on to have children who ALSO were hemochromatic--thus increasing the genetic prevalence of the "disorder."

Funny thing about it??  The most effective treatment for the disorder is blood letting--but instead of leaches you may just want to give blood to the blood bank every 3-6 months :-).

BTW an overly active immune system also accounts for lupus, and the increased activity in your blood stream can help account for your vasculitis.  

I'm not saying you don't have lyme (trust me--I'm dealing with my own possible Lyme he)) at the moment)  but the hemochromatosis is definitely genetic.  

If you want to read up on the disorder and gain some valuable insight, check out a book called "Survival of the Sickest" by Sharon Moalem (Sharon is a male in this case just you know--it strikes you about half way through the book haha).  The entire first chapter reveals the genetic history of the disease, and it illustrates the evolutionary benefit as well as the unmitigated side effects---which genetically speaking aren't as big a deal as death by plague.  

Read the book and talk with your doctor.  YOu may find that regular donation of blood solves a lot of your problems!!!

Hope you feel better soon!

[JackieCalifornia]

Yes, this can be a difficult time of year for all kinds of reasons, and to be sick on top of it doesn't help.  You hang in there, and keep plowing ahead, okay?  You have lots of people who care about you and need you to be around and work at getting well -- kids and a fiance!  That's great.  Count your blessings and know that you are one of their blessings too.

[mojogal]

Thanks Jackiecalifornia, I have tried everywhere to find an LLMD here with no luck. I know within 2 months I will be moving to FL where I have an LLMD waiting for me but in the meantime, all the specialists here, well, even I know they are wrong in what they tell me.

If you say the word Lyme, here in San Antonio, they look at you like you belong in the funny farm. I have had to switch my primary Docs twice because of their actions (or no actions) when I say I have Lyme. They seriously treat you like you are a little nuts.

So now I am at the point where , I have no primary. I am going to see the specialists and as I think I said many moons ago when I had been on here, I have a medical professional friend in VA who also has Lyme and she says to me  it is all part of Lyme.

So I am not giving up, although sometimes  I have days that I feel like jumping off a bridge and as I sat here alone for the first time in my life on my birthday (Christmas eve), Christmas and to some extent New years eve, I felt that giving up might be easier than this but then I think of my daughters and my soon to be fiancee and it stops me.

So you are right, I won't give up and I also hope everyone is better in 2012.

[JackieCalifornia]

Well, hey there.  Long time no see you post here.

Sorry you're not doing better.  Lupus is an autoimmune illness, and Lyme is sometimes/often misdiagnosed as lupus; Lyme is not autoimmune, but is a bacterial infection.  

Vasculitis is inflammation of the blood vessels, and the causes can vary, I imagine; since inflammation is something that happens with Lyme, vasculitis is a possible condition in Lyme, I would think.  

Hemochromatosis (a build up of iron in the blood) can be genetic origin, but it's a bit mysterious in other possible contexts, from the other reading I have done briefly.  Short term memory, which you report, is a symptom of Lyme itself, due to swelling in the brain and probably other effects of the infection; some people seem to have worse neurological (brain and nervous system) symptoms than others.  Memory problems are not uncommon in Lyme.

Generally speaking, Lyme has a lot of symptoms that vary from person to person and in the same person over time, so having an MD who understands that and can view all your symptoms in light of a Lyme infection is important, rather than viewing each symptoms separately.

Is your doc a Lyme specialist?  That is, in my experience, the most important thing:  finding the right doc.  I think there is a Texas Lyme disease association that may be able to help you find a Lyme doc near you.

Don't give up!  Let us know how you do -- best wishes for 2012 and all the years ahead.  (Don't give up!!)