SRS I'm Caught

Discussion in 'On Topic' started by METALLlC BLUE, Mar 11, 2005.

  1. I'm currently caught between a rock and a hard place. I have decisions I have to make in regards to two main people I'm interacting with. Both sides make absolutely excellent points. Both sides also have a darker aspect. One without answers, critical of the other but willing to search, and the other with answers but not appropriately guiding me during the most serious of times when needed. Both sides disagree to the fullest extent on all levels regarding ideas, beliefs, ethics, and character.

    I have to make some really difficult decisions in the next few weeks. I'm trying to find answers and to strike an ideal which leaves me winning. I'm trying to explore all sides of what these individuals offer and take things one day at a time while also including the opinions of family, and my closest friends. I wanted to let it be known here just how difficult it is for me to do this.

    My life literally as I know it hangs in the balance with the decisions I make, and since I don't know what to do - I'm saying so.
     
  2. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    Whats going on?
     
  3. Killa B

    Killa B Abuse This!

    Joined:
    Nov 15, 2004
    Messages:
    196
    Likes Received:
    0
    Location:
    Colorado
    I'm Confused :confused:, what decision?
     
  4. While hospitalized for the PIC line I met the infectious disease specialist who is most well known in my area. He vehemently - though diplomatically chastised my other Infectious Disease doctor. He had good reason which I'll explain later, however he's also as far right as you can go regarding the treatment of my current diagnosis and his opinion of the diagnosis. Basically there is a lot of controversy with the diagnosis and treatment of late stage and Chronic Lyme. Dr. Donta is on the cutting edge of the research, and Dr. Hoffman is orthodox and traditional stating that Lyme can be cured with 4-6 weeks of antibiotics, period. It's cured, end of story. If symptoms continue, it wasn't Lyme but instead something else, or damage from the infection - not continued persistent infection as Donta states.

    The other doctor [Donta] has been treating me - with limited results, a lot of relapse, some improvement but once again during an emergency [this was the second time] he was not available and did not touch base. He was warned over a week ago of high fevers in an e-mail which stated I was running 103 and 104 F yet he didn't advise further, nor did he return two emergency phone calls from my mother or father requesting guidance. We thought the fevers were because of Lyme, but it turned out to be sepsis from two separate infections that got in thru the PIC line which was installed to run IV antibiotics for the Lyme Disease.

    Donta holds that many patients like me take years to improve or even show a relief of symptoms and he is absolutely convicted to his diagnosis. He could be wrong, I don't know - but you can see the conflict here. The evidence for Lyme is considered mild and clinical diagnosis is being heavily relied upon by Donta's experience.

    I'm in the middle of writing Donta an e-mail basically telling him what I and the family feels - that we're pissed and he needs to answer for this lack of response in an emergency.

    I'm also talking with my family about seeing another Lyme specialist as well as running a lot more tests with the other doctors so we can challenge the diagnosis and try to find answers if I am on the wrong road. I've been down this road hundreds of times in terms of testing and so forth and I hate it - but I don't know what else to do, I don't have any damn answers and I'm overwhelmed by this controversy and the ongoing challenges of whatever is wrong with my body.

    Further testing is being done: Blood cultures have been taken, a Spinal Tap was done, an EEG Brain analysis was done, as well as CT abdominal scan with oral contrast and injectible contrast. I have a Brain SPECT scan next week too, and further testing will follow with the advice of the doctors I'm working with.
     
  5. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    Thats a real motherfucker. Donta sounds like a quack. My personal opinion is... I find it hard to believe that it would take years of antibiotic treatment to cure anything. It sounds like he's selling false hope.
     
  6. It's an awful situation, and I'm so sick of being bounced around, I'm sick of being sick, and I've invested a shit load of effort in 18 years to find answers, and all I get in return is shrugged shoulders or answers that really don't match the overall symptoms, and even if the answers are given and accepted the treatments haven't provided any relief.

    He very well could be a quack, and that's what Dr. Hoffman said. He said and I quote "I know Dr. Sam Donta, and let me tell you - he has a big boat and he takes an awful lot of vacations."

    Every bit of research I've done on Donta shows a stellar review. I checked his Mass Medical records - all of it...spotless and as credible as they come. go HERE to read his Massachusetts Board of Registration in Medicine profile.

    So I'm really upset about this. I'm going to have to make decisions and probably see a lot of other doctors before I'm done. If I'm fortunate answers will be found that get me well which is all I ever wanted.
     
  7. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    So the other guys says, basically, "Look, I know you have alot of problems... but the cause was probably Lyme Disease initially, and you've just been dealing with the neurological and other effects ever since."

    Aside from sparing you the side effects of high dose PIC antibiotic treatments... what does this path offer you that the other one doesn't? A potentially more realistic treatment path that focuses on symptoms of the damage, or what?
     
  8. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    He hasn't been ABMS board certified in infectious disease. I would want to see that in my doctor. I'm looking around pubmed... and it looks like Donta's studies are not double blind, and that he criticizes those that are :ugh2:
     
    Last edited: Mar 12, 2005
  9. Bioanger

    Bioanger Self-Proclaimed moron

    Joined:
    Aug 1, 2001
    Messages:
    161
    Likes Received:
    0
    Location:
    Berkeley
    So I am I correct in understanding that you are choosing between an informed doctor who won't be there when you need him and an uninformed doctor who will?

    My own experince is that it is better to have someone around when a problem comes about, even if that someone is less than perfect.
     
  10. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    Its not that one is informed and the other is not. Its more that one advocates a somewhat radical and unproven treatment that has serious side effects and has not been accepted by the medical community at large, and the other holds to more traditional remedies. They are both informed. They just disagree.
     
  11. Correct.
     
  12. That is true.
     
  13. Yes, he acknowledges there is something very wrong. He says "No, I don't think you have Lyme Disease." However, he hasn't been treating me or seeing me so he really doesn't know, and he admitted to that. He's also not a Lyme Specialist. However, he made very good points and given he attacked Dr. Donta's credibility that forces me to put a question mark over Donta and I'll need to seek another unbiased specialist - at least not one attacking the character of the others and who will actually manage my care.

    Orthodox path: The orthodox path requires me to go on a search for answers. This means going to Tufts, Yale or some other investigation intensive hospital for a lot of testing. It requires looking for other diseases or problems that may be the cause of my current health decline whether they support or oppose Chronic Lyme. With this path a possible cure or answer can be had which explains the cause, and it's also possible no explanation might exist beyond some vauge diagnosis like Chronic Fatigue Syndrome or some other big unknown.

    Lyme Path: Path is punctuated by severe relapse for chronic cases like mine - if indeed the diagnosis is correct. Requires multiple years of therapy [regardless of which Chronic Lyme Specialist in Infectious Disease that you go to] - it can be cured, but evidence and testing are not accurate, or effective. I have seen positive results while on treatment, but I've seen devastating symptoms and hospitalizations as well.

    I think ultimately my family and I are going to have to search on both sides - both with those who believe in Chronic Lyme, have credibility and are willing to evaluate and test and form an opinion, and those who don't but are willing to also run a vast array of tests and also explore while forming their opinions.

    The goal is get me well at any expense, and to avoid the controversy, and character or personal bias of these people.
     
  14. Toasty

    Toasty Naked people have little or no influence on societ

    Joined:
    Mar 4, 2005
    Messages:
    790
    Likes Received:
    0
    Well, a doctor's rapport with his clients says a lot to me. When my dad had a big emergency 2 years ago we had to see several specialists, and while ALL of them were very qualified, it didn't take too long to realize that some cared very little for their patients. Not that they didn't offer medical help when needed, but they just didn't bother making any sort of connection at all with you...and that's unsettling to me.

    Other doctors will go out of their way to take time of of their schedules to make you feel at ease. They'll sit you down, explain everything to you, explain it again and again if you need to, and find the chance to call you back anytime you need them.

    To me, this is a vital part in being able to put faith into the diagnoses and treatment they give you. In other words...this Donta guy rubs me the wrong way.
     
  15. I'm not abandoning ship with Dr. Donta right this second, but family and I are moving towards a third party Lyme Specialist as well as Third Party testing no matter what. Would you all support that?

    Is seeing specialists on both sides of the debate, and also looking for other disease processes what you think is best? I do, but I'm not sure if I'm missing anything.

    I'm emotionally overwhelmed and possibly irrationally invested in my current diagnosis given the time I've put into it and the faith I held with my specialist. Some think this is a mistake but you must remember that for years I was told that didn't put faith in my doctors or trust them enough to manage my care...so I did when I stumbled across a doctor who could actually give me information that finally made sense and addressed all of my complaints.

    Now I'm finding out I may have been wrong to trust him, so I need help making some decisions here. Family is working hard to help me there.
     
  16. Thank you for giving me your perspective. I have written an e-mail which I'll share with you all. This is very serious for me, so I hope you all will take it equally serious.

    On [2-27-05] I reported fevers of 103 and 104 to Dr. Donta and said I thought they were caused by the Lyme. He wrote back on [3-06-05].... that's a week, and he said nothing about the fevers. I was wrong. He requested I have the PIC line removed but gave no guidance on the fevers. I feel he should have.

    His response was:

    Thanks for the update; happy to hear we might be making some progress. Let’s keep going with the tetracycline, and see where we are when we get together at our next appointment. Regarding central line, I’d suggest having it removed, as it’d be very unlikely that we’d use any cephalosporins or penicillins in the future.
    Best wishes

    [End]

    Now I am writing him a current letter. I have an appt with him on April 9th of 05.

    Here is what I currently have said - it has not been sent yet and is subject to change as family and people who care about me comment:

    Hello Dr. Donta,
    The therapy is currently: The therapy is Tetracycline 750mgs bid. I also take Pentasa, 1,000mgs x 4, Levaquin 500mgs x 1 and Bactrim 800/160 bid.

    Note: The PIC line was removed and was infected. A CT scan of the abdomen with oral contrast and injection was performed. A lumbar puncture was also performed [3-06-05], a lot of blood cultures were done, and an EEG of my brain was done.

    Not sure I would call this progress after this last emergency room visit. I was clearly wrong about the fevers, and it nearly was the end of me. I'm disappointed that you didn't advise me when I reported 103 and 104 fevers to seek emergency care.. I had no way of knowing what it was from, but I feel you should have. That PIC line getting infected nearly killed me. Stenotrophomonas and Serratia marcescens were found on the PIC line and in the blood and require treatment immediately with 500 mg of Levaquin x 1 and Bactrim 800/160 bid.

    I still can't reach you in an emergency. This is the second time -- even after both my mother and father called stating it was an emergency. No response was received, nor did Mercy receive any input from you. I saw Dr. Robert Hoffman (413) 737-**** an infectious disease specialist and Dr. Michael Sorrel (413) 781-**** a Neurologist - both are challenging the diagnosis of Chronic Lyme as well the last Brain SPECT scan from UMASS. I'm not interested in the politics, and character assassination going on between you but I am caught in the middle and I'm the one ill so I need answers. What am I supposed to do? -- Flip a coin between you all to see whether I live or die?

    My family is forcing me to seek further opinions, and I'm sick of trying to manage my care when I haven't a clue what's going on or what I'm doing. Hoffman is requesting Tufts or Stoneybrook out of NY to evaluate blood and further testing. I will continue treatment with you right now because I believe in it...because I've invested 3 years, and because I really don't have any answers -- however my family and I needs to be able to reach you so I'm getting the appropriate guidance and management of care while I move through this process. Regardless of what contact information you give us to reach you, at this point I am going to be forced to also see another Lyme Specialist to re-evaluate, and formulate a second opinion even if I continue treatment with you.

    Sincerely,
    Michael Parent
     
  17. Peyomp

    Peyomp New Member

    Joined:
    Jan 11, 2002
    Messages:
    14,017
    Likes Received:
    0
    I think its time to move on. I don't think Donta is credible, and he doesn't sound like he gives a shit.

    Why did they give you an EEG?
     
  18. Thanks for your input. I just added a piece at the bottom of the e-mail to Donta which states: "Regardless of what contact information you give us to reach you, at this point I am going to be forced to also see another Lyme Specialist to re-evaluate, and formulate a second opinion even if I continue treatment with you in the interim."

    So I've taken the first step towards challenging the credibility issue and his diagnosis while still giving the diagnosis a thorough review. This is only one small component of what it will take to find the "real" truth. Having multiple opinions and seeking out the truth of people on all sides is going to take a lot of time.

    The EEG was done because my last Brain SPECT scan said and I quote:

    "Tomographic SPECT images demonstrate a heterogeneous pattern of cerebral cortical perfusion ranging from 50% to 70% of max Cerebellar perfusion."

    "Conclusion: Heterogeneous cerebral cortical perfusion suggesting a widespread process such as microvascular, infectious, or encephalopathic process rather than a large vessel or classic degenerative dementing process."

    This Brain SPECT scan was done at UMASS Memorial University Campus Diagnosis Center.

    The doctor: Dr. Hoffman said "This scan does not belong to you. It can't be right because this is the brain Scan of someone significantly cognitively deficient. This is the type of scan we'd see with someone who is 80 or 90 years old who is suffering brain damage and cognitive defect to a high degree." I paraphrased what he said, but that was pretty close to what he said.

    Dr. Hoffman then said "I want you to see a Neurologist." I asked him if his child was sick and in my condition who would he want him to see? So he said "I want you to see Dr. Sorrel, that's who I'd have my child see." So I saw Sorrel and he evaluated me in the hospital room. He read the Brain SPECT scan and said he needed and EEG performed and another Brain SPECT scan at a place of his choosing. I agreed. The EEG came back totally normal.

    Does that answer your question?
     
  19. If we have any Neurologists on the forum I'll gladly show you an actual scanned copy of the last Brain SPECT scan to get further opinion.

    Simplified the Brain SPECT scan in laymen's terms is saying A good portion of my brain is not working, and may be damaged or severely decreased in activity for whatever reason: The reasons listed are a widespread process such as microvascular, infectious, or encephalopathic. Meaning inflammation of some kind, or infection is causing the defect based on the interpretation of the person who read the scan.

    Dr. Robert Licho at UMASS in Worchester is the Medical Doctor who read the scan and filed this report. I don't know who he is, but clearly now his opinion is being challenged too.
     
  20. JordanClarkson

    JordanClarkson OT Supporter

    Joined:
    Oct 11, 2002
    Messages:
    59,959
    Likes Received:
    16
    Location:
    Go Dodger Blue!
    Has Dr Donta been MIA in the past? If this behavior is more recent, perhaps on some level he's starting to question whether or not he was right about you, but of course doesn't want to admit it just yet. I've learned that there are indeed quite a few quacks in the medical and scientific world. Some of them will turn out great, but it's quite rare. After 3 years with someone, you shouldn't feel like a guinea pig.
     
  21. Darketernal

    Darketernal Watch: Aria The Origination =)

    Joined:
    Oct 8, 2002
    Messages:
    10,498
    Likes Received:
    3
    Location:
    Care,for all is like a bonsai tree
    It's very easy in the way i see it i would stay with Dr. Donta for 3 more weeks (give it some time) and if it doesn't work , you can always go to Dr.Hoffman. Listen the whole thing about your family being pissed at the docter is sorta biased , docters are very busy people who get emergency's all the time and usually get more work scheduled on their plates then they can handle. For you the choise is easy, give Dr.Donta's treatment a fair chance, Dr.Donta is on the cutting edge of Lyme treatment and Dr.Hoffman swears with old tradition cures which you already tried and didn't work or worked backwards. So stay with docter Donta until you gave it a fair chance till you say to yourself' i've had it, this doesn't work' and step to dr.hoffman. You've been ill almost all your life , this treatment might cure you and i don't see(relativewhise) what these 3-4 extra chance weeks you give him can mean all that much to you.
     
  22. KatWoman

    KatWoman •••••••••••

    Joined:
    Aug 15, 2000
    Messages:
    20,066
    Likes Received:
    0
    Location:
    Phoenix, AZ
    Since it it close to being time for me to leave work, I skimmed through some of your posts. If I were you I would documenting your problems and lack of responses (if you haven't already done this). Septic infections are not a joke. I work at an personal injury law firm, and we;ve had a few medical malpractice cases where clients got these infections because of lack of care by their providers...WHILE THEY WERE BEING HOSPITALIZED. Unfortunately they ended up dying as well because even after the drs. were aware of their problem they still let it go! I guess the attitude is they (the patients) already have one foot in the grave, let's give them that extra push :ugh2: I would definitely switch doctors. You're running a fever and have a septic infection from a PIC line and the guy's too busy? That would tell me my answer right there.

    Good luck and keep us posted :hug:


    I
     
  23. I sent the letter today to Donta. It was difficult, but after consulting family and my home nurse I sent it as is above. I have the Brain SPECT scan on thursday. Records are being compiled as well. I've called the original Infectious Disease specialist who I saw in Providence RI in 2001 who referred me on to Dr. Donta. She'll have the records of all the testing she ran when I sought her help with my list of symptoms.

    Also, I have updated my blogs: I've had good news to report the last day or two. The cliff notes is that I'm gaining weight, putting on muscle, and I've been much more active. I've seen these periods while on antibiotic therapy. A relapse usually follows, but these improvements have only taken place while on the antibiotic therapies. We shall see how I continue feeling.

    I've continued to treat the septic infection and continue to run normal temperatures. I believe the medicine is working well [Bactrim, and Levaquin], and I'm recovering well. I see my PCP next Monday. I will ask for further help setting up a full work up through Tufts in Boston or Yale, or Stoneybrook. Tufts will likely be the choice.
     
  24. Britney Spears

    Britney Spears New Member

    Joined:
    Mar 10, 2005
    Messages:
    541
    Likes Received:
    0
    Location:
    Beverly Hillz, California *~ I LOVE FANMAIL! ~* Je
    Maybe get a 3rd opionion?

    Gee, I dunno. Doctors can be so fos somethings.
     
  25. That's the road we're going to take. Ultimately I could get all the opinions in the world, and they'll still be sharply divided without conclusive testing, and since the testing is so poor - it's going to be a miracle if I can't get anything that'll be black or white.
     

Share This Page