The Good News and the bad and???

Discussion in 'Fibromyalgia Main Forum' started by kerrymygirl, Aug 6, 2003.

  1. kerrymygirl

    kerrymygirl New Member

    Hi all, I was off for awhile to just recently. I thought this might be of interest to some who know of me or not.

    Anyway,I had normally posted that my primary would never look at me and would only speak about my cholesterol or osteoP
    This time he looked at me spent time with me and had a discussion. YIKES! Could have picked me up off the floor, he usually shows no emotion. This is after over 2 yrs.

    This visit he actually spoke to me about my lyme and my suffering of so many side affects etc. He actually admitted they do not know enough about any of this. Also that long term antibiotics they are thought to only give to 3 diff. disorders. None of what I have included. Of coarse....

    He admitted the problem of people like me with lyme and fm/cfids/high ebv. etc. are too costly. That he knows that all this is bandaid treatment. He looked like he almost had some tears in his eyes because I am not getting proper treatment and I am slowly getting worse.

    He gave me scripts without asking, he offered a short coarse of antibiotics but we both felt it could only multiply my spirochetes, as did when I got my 4wk. doxy dose. Got much worse after. They hide in brain and multiply when not trated aggresivly.

    The day after I got bit again by something. My whole elbow part of arm swollen. Then stiff neck,way more than norm cerv. prob. I have. Then my vision, could only look straight ahead,I was up for almost 5 days straight my head was diff. than norm felt like backend would blow off. Then 4th day fever, I usually run between 94 to 97. It went to 101, with tylenol in my meds. I lost my appetite could barely move. Now finally called Dr. they said call rheume. He said call my doc which I just did. Then said maybe should go to ER. Well, my car was dead, I could not drive like that,my phone was out(crushed line)plus computer prob.

    Anyone I knew close has been recently transferred I was so sick and scared. Because I was in hosp 10 days with meningitis, same symtoms, which ended up being lyme bite.

    I have made it through 1 day felt a bit better. Sun. went down. I almost lost it just tooo much, too alone just tooo everything. I still am not sure what happened if it was the bite or just timing.

    I just needed to share I have just felt so alone and so discouraged except for once I was not afraid to go to doc.

    Just the acknowledgment finally means so much, if these doc`s only would get we need to be seen I mean seen>>>

    I usually absolutely hate to go, but atleast before I got so sick, someone knew I was there a person with feelings and so tired of the fight. Or feeling like a little kid to get my meds. He did not even ask or hesitate gave me refills.

    Well, this ended way too long, I have been cooped up alone, can you tell...lol Sorry but get your doc to listen however you have to do it......Thanks,Blessings and hugggss to all in need.......
  2. kerrymygirl

    kerrymygirl New Member

    Just to let you know to keep plugging to get your doc to listen. If nothing else it gives 1 some satisfacton, and give them something to stop for once and think about.

    Also on the other side have had a very tuff lonely time, need a little support I guess from somewhere or someone. Just everything has gone down hill, alot of personal diff. As we know chronic illness creates. Fam.,financial, too many losses in short time.

    Thanks everyone.......
  3. lease79

    lease79 New Member

    that you finally got some recognition of your condition from your doctor.
    It is seriously unfair that we have to spend so much of our time trying to convince dr's that there is actually something wrong with us in the 1st place.
    I hope that you are able to work something out treatment wise with your dr soon that will benefit you in the long run.
    ~*Gentle Hugs*~

    Lease
  4. kerrymygirl

    kerrymygirl New Member

    So many doc`s and so many stories, they just don`t know how lousy a person feels when they treat sick humans like a nothing. Many pts. said at the clinic how many times they have walked out of doc office in tears. Spending money to get treated like a lesser human being because they either do not believe or just don`t want to.

    I know I had a doc throw my scripts that a rheume wrote wanting me to get certain tests and see a specialist who could help. He said, I do not believe in this stuff so no use coming here. Plus another pain management would not even walk into room. I just needed some injections for my cervical damage. Once he saw fm and cfids and lyme. He would not walk all the way in room.

    So when people atleast feel they listen and hear you and be honest why they cannot help more. I appreciate that so much more and I know from the tears I wiped away from people at clinic (for pain and arthritis), that they just would let go and tell me everything they felt they could not say before.

    It doe`s help. I just have been going through such a diff. time, since I cannot get well unless ins. would approve treatment for my lyme. I just keep getting worse.
  5. klutzo

    klutzo New Member

    I know you had a really rough time with that bite. Do you have any idea what it was that bit you?
    I wish your insurance would allow you to go to my holistic doctor. He is on 66th St. in St. Pete and not as far away from you as he is from me.
    He believes in our illness, he has a program of attack for treating it, and he never spends less than 20 mins. per appt. He is not big on meds though, and you have to come in once a month to renew controlled substances, which is why I am keeping my conventional doctor up here, even though I don't want to. I can't be going to St. Pete once a month to get my lousy Xanax refilled. Every time I go, Don has to take 1/2 off without pay to drive me there. I know you have been able to drive much more than I have, and you are a lot closer already, so it might not bother you so much.
    Aren't you eligible for Medicare now since you're on SSDI? If you are you can go to him! His name is John DeCosma, D.O.
    I don't know how to help you other than to pray for you.
    Klutzo
  6. beckster

    beckster New Member

    rough right now. Is there anyway you can find a lyme literate doc in your area and start treatment? Are the meds so expensive you can't afford them or your insurance won't pay?? I don't know the details in your case; just trying to help. Which script was it that he gave to you?
    It seems there must be some way we can get help and get meds. I wonder if any of the Florida people know.
    Thinking of you-- the Beckster
  7. kerrymygirl

    kerrymygirl New Member

    Klutzo, how are you doing buddy? I am on SSD do not qualify for ssdi do to my assets, condo,car and what little I have left that I try to pay for ins.,food etc. My doc wants to help now, but I need such expensive aggressive treatment. Prob. yrs atleast and then you still relapse. I have a lousy lyme doc on my ins. So they will not let me go to another. Plus the 1 here expects pay up front no ins. accepted. My friend walked out 5,ooo grand short and that was just the start. It prob. would be around 50,000 from what figures I have gotten so far from lyme info. No guarantee to get back to work to make it up. Plus now I have so many co-infections and spine in bad shape. So what the solution is is diff.

    My driving is down next to nothing I took my car out to get a battery and put it in I can barely use my arms had till last night been up almost 3 days straight in pain,numbness,neuropathy stuff etc. This guy that lives here asked me out about 6 times, just to sick to go. Weak from lose of sleep and appetitite and terrible pain.

    If I did not have a lyme doc on ins. I could request one but the Bowen Dr. W., lyme Guru. Said I need to go to Pa. due to how bad I am to get a good doc. Really should try R.I. since they are 1st to approve lyme treatment. I lived there once but very expensive. The only 1 here I was told not to go to.

    I do not know what bit me still have scar. I get bites all the time, bug magnet, even bees. It could have been the timing but a tad suspiscious, hmmmmmm

    I just could not believe it was do to another bite or did not want too.

    I guess I am just to sick and tired to fight anymore. Have tried so hard like so many for too many yrs. No support system and lots of other prob. going on.

    Thanks all for your replys and time, I appreciate it......