seekhelp
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posted
No, that isn't cool at all. Didn't you say Dr. H claims believes some patients 'want' to be sick or something along those lines? I'm NOT saying you are one, but I thought he had an odd general philosophy.
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METALLlC BLUE
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Want? No it wasn't quite like that. It was more along the lines of "emotional blocks" as he called them. I told him that if emotional blocks were my problem then why did I respond so well to Vancomycin and Tetracycline and Doxycycline? I did "extremely" well on IV Vanco, but I developed an allergy and a subsequent PICC line infection.
You don't get well on an antibiotic and then relapse because you have "emotional blocks." Not in my case.
I never gave them a hard time nor was I non-compliant with any therapy. I was always organized and took part in the process though by asking questions, and putting forth ideas as well as listening carefully to them. I did exactly what I was told.
I got better with certain therapies but quickly would relapse and the drug would stop working. The only drug that seemed to help was Malarone, Doxycycline, and Bactrim but I developed a strange reaction to the Bactrim, my skin turned a very "sun-burned" type of response even though I hadn't gone out in the sun. We had to stop because of that.
The last appointment we had he told me that my last option with his office was to do IV antibiotics. I told him I wasn't ready to do it and I asked him if it was ok to wait until I felt comfortable. He said something about "Post Trauma" from my 2005 Sepsis incident and I told him "Yes, I agree, that's why I'd prefer to wait until I feel more comfortable." He and L said it was fine. I told them I'd come back at a later time if necessary and they said it was fine.
I know they're not being honest about not being able to give me additional therapies. Other people are receiving aggressive IV antibiotic therapies.
So, basically I got owned. Believe it or not, I'm really not sure who to turn to now. I have a huge list and I can't think of anyone who will be willing to just do what needs to be done without having to jump a lot of hoops.
[ 07-12-2011, 02:07 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
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Member # 15067
posted
Emotional blocks seems like a far-fetched theory w/o being a licensed psychiatrist. I'm not saying mental issues aren't real in any way. Just because someone doesn't make big improvements with the doctor's therapy doesn't automatically mean it's our fault IMO.
While that office looked for a lot, I will say there was stuff they didn't look for. When it was too outside the box, they closed up. I think there are a finite number of compartments in many doc's eyes causing illness and they are the only ones that will be opened. I challenged them on a theory that is kind of far-fetched and they closed up fast.
I'm sorry you're stuck in this position now.
I may be a little blunt, but I think the downfall of getting the treatment you need may be your super attention to detail / notes. I respect it, but many people would quickly determine one is not 'that sick' if able to write books of data and capture endless details. It's tough to understand illness becomes your life when feeling terrible.
Did the person who got all those serious IV treatments not offer that type of detailed feedback to the physician? People on death's door usually can't function like that.
Again, I am NOT knocking you. I'm like you in some respects with my detail, but to a lesser degree. Just be aware what you consider 'helping' your doctors may be perceived as a threat or differently than wanted. Even my own wife often makes comments like this about me so what's that tell you? What on Earth do you think our doctors believe?
Anyone who can't understand someone being gun shy about IV after a life/death sepsis event, well......I imagine that is something you need to experience to fully understand. It sounds incredibly scary. I'm sorry you went through it.
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momindeep
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Metallic...I am bummed for you. I was following all these things you have been writting and curious to what the journey would be like for you on this path you have thought out.
When does a LLMD drop a patient? Is Dr. H a LLMD? Maybe I just haven't heard of this before...I know regular doctors that kick patient's butts to the door, but not LLMDs.
So sorry...wish we all could find you a doctor willing to consider your ideas, put the data together and do the therapy...write reports on the entire process so everyone could learn from it...a perfect world...I think you have a lot to offer the Lyme community.
Don't give up...there is a good possibility that there is a very valid reason why this did not come to pass.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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I would feel like it's a slap in the face. I agree with seek, after a life threatening sepsis event, who wouldn't be scared!
I have so much respect for Dr. H., this disappoints me. Could you follow up with some questions as to why they will not take you as a patient, when you have not utilized all that is available?
If they do not take you as a client, can you ask the reason, and why they feel your treatment failed...was it something you did, or something you need to change? They owe you that....
Sometimes , when things like this happen and the door closes, it's because another path is meant for you.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
When a patient has had a lot of treatment already, some doctors get gun shy and push him/her out the door. Difficult cases are trying, and in our current situation, trying gets doctors in trouble.
Not sure it is always the case that something else is meant for you, that you needed to move on. But sometimes it does happen. I went to a well known doc for a short time, but had to find someone else and it turned out that the well known doc did not know how to handle cases like mine, and the doc I went to next had a better idea of what to do. It wasn't the rescue I wanted because no one has it figured out, more a matter of at least not doing the wrong thing.
So, hope this makes a little sense and that you will find someone who can take you to the next step in your treatment.
BTW, I was pushed out the door of a doc who didn't want someone who had already been treated a lot and wasn't well. After more than ten years post diagnosis, I have had a lot of doctor experiences.
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glm1111
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posted
Hi MB,
So sorry you are having such a hard time. I agree with canefan and several others that have posted about treating for parasites.
I was at deaths door after 4 years on abx including 6 mos of IV Rocephin and 2 years of IVIG. It took me 6 mos of 16 caps a day of strong herbs from The Monastery of Herbs and salt/c till these bas...ds let go.
I couldn't have been more shocked when they appeared in the toilet. The protocols you mentioned above for treating parasites, was not nearly enough IMO.
You may have the Filarial Worm co-infection and need to treat more aggressively. Humaworm is not strong enough. Have you tried salt/c at all? It is VERY powerful and the parasites can't stand it.
Hoping you would give this a try along with maybe some Parastroy to see if you get any reactions/results. Also Monastery of Herbs are excellent as well and saved my life.
They have specific herbs for Lyme, bart, babs, parasites etc. Persistence with antiparasitics is KEY. Thoughts?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
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posted
I think what Gael said makes a lot of sense given the history.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by seekhelp: Emotional blocks seems like a far-fetched theory w/o being a licensed psychiatrist. I'm not saying mental issues aren't real in any way. Just because someone doesn't make big improvements with the doctor's therapy doesn't automatically mean it's our fault IMO.
I saw a psychiatrist and a social worker (Been seeing the Social Worker for 15 years now. Neither of them told me I had "emotional blocks." The Psychiatrist did tell me that she felt it was time for me to "stop searching" for a solution and to simply get on with my life. I told her that 35% function, an inability to leave the house, inability to work, and feeling sick alot was not fair to me and not a life worth living, so until I exhausted all known options, I wasn't going to "accept" this lifestyle. I told her it was illogical, and she didn't agree. I told her, well you're also not debilitated and sick and fighting to be understood, treated, and helped. I didn't go back to her, but -- she did agree that given my situation I am a mentally healthy person.
quote: While that office looked for a lot, I will say there was stuff they didn't look for. When it was too outside the box, they closed up. I think there are a finite number of compartments in many doc's eyes causing illness and they are the only ones that will be opened. I challenged them on a theory that is kind of far-fetched and they closed up fast.
I agree.
quote: I'm sorry you're stuck in this position now.
Me too, but I'm not as anxious and shocked as I was the other day. I'm thinking this thru.
quote: I may be a little blunt, but I think the downfall of getting the treatment you need may be your super attention to detail / notes. I respect it, but many people would quickly determine one is not 'that sick' if able to write books of data and capture endless details. It's tough to understand illness becomes your life when feeling terrible.
The irony is that if being myself is keeping me sick, then it's no wonder I stayed sicker for as long as I did. I suppose my inability to accept diagnosis that I knew weren't correct, and my resistance probably made things worse. However, I know I was right to do it given the information I had. Given what I know now, I also believe I did the right thing. I wasn't going to just accept "emotional blocks" as the downfall of my health and what was keeping me ill. Nor was I going to just jump back onto the IV antibiotics until I felt I was mentally ready and capable of committing to it. I asked for time off, I wasn't a jerk about it. However, no matter how clear I am, perhaps I am threatening to some people because I avoid sugar coating. I show respect, but if I disagree, I explain why, and ask them if they still feel very strongly about my pursuing it. Sometimes they would say no and agree, other times they would say "No, I really think this is what you should try, even though you make good points."
If someone can't handle my participation, then I shouldn't be working with them. It's not me that is the problem, although I obviously can cause someone else to be reactive if they're already a very unstable or egotistic, or easily threatened person.
quote: Did the person who got all those serious IV treatments not offer that type of detailed feedback to the physician? People on death's door usually can't function like that.
Yes, she's just like me. I'm not on death's door. I'm 35% functional. I'm trapped between the world of going outside but not being stuck in bed "ALL" day long. I am stuck in bed often for many hours when I'm so tired I can't get up, but it clears after a few hours and I can shower, wash dishes etc, but it's tiring.
quote: Again, I am NOT knocking you. I'm like you in some respects with my detail, but to a lesser degree. Just be aware what you consider 'helping' your doctors may be perceived as a threat or differently than wanted. Even my own wife often makes comments like this about me so what's that tell you? What on Earth do you think our doctors believe?
I think that I'm not perfect, and I think I've made it clear that I can't do it alone and therefore pay them a lot of money to help me, but at the same time, I've seen a lot of doctors who made a lot of crucial errors and so I became a well educated consumer of medical care. The more I learned, the more help I got. The more organized I got, the more it detailed the complex nature of treatments and of appointments.
L, the woman I saw at Dr. H's office never would have booted me. She told me straight to my face, and I have it recorded on tape, as well as witnesses that she "Absolutely loves the way I particiate and organize things, and that she wishes all patients could or would be able to provide such thorough material so they could quickly move on to dealing with the problems."
I know if I got dropped for personal reasons, it's from Dr. H directly because he really didn't like me. No one who went with me to appointments understands why either. Because while there I was always nice but the did notice his behavior was irrational and strange towards me.
quote: Anyone who can't understand someone being gun shy about IV after a life/death sepsis event, well......I imagine that is something you need to experience to fully understand. It sounds incredibly scary. I'm sorry you went through it. [/qb]
I was definitely not going to jump into it and that's why I asked for patience, and asked if I could take a break from seeing them until I was ready to move forward. I felt it was a good idea for them and me, and they agreed at the time, and now suddenly this?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by momindeep: Metallic...I am bummed for you. I was following all these things you have been writting and curious to what the journey would be like for you on this path you have thought out.
I know, me too. Thanks for empathizing.
quote: When does a LLMD drop a patient? Is Dr. H a LLMD? Maybe I just haven't heard of this before...I know regular doctors that kick patient's butts to the door, but not LLMDs.
He's done it to a lot of other patients that I've come in contact with. He is an LLMD. I don't know how he can justify doing this when there are plenty of options left. He told them to me the last time I saw him and said "Come back when you're ready to move forward with the IV."
quote: So sorry...wish we all could find you a doctor willing to consider your ideas, put the data together and do the therapy...write reports on the entire process so everyone could learn from it...a perfect world...I think you have a lot to offer the Lyme community.
I've given what I could. I became exhausted though and have started primarily just maintaining projects and focusing on myself. I wish a lot that the doctors would explain to me what they think and want instead of behaving poorly. This isn't the first time I'd been dropped, but other times I can understand. They couldn't help me because I told them that they were incorrect in the diagnosis and that I felt we needed to pursue something else. When they said "No, we're not going to pursue anything else" I said "Well, then we have nothing left to do here." It wasn't irrational, in the end I was right. I had undiagnosed Rocky Mountain, Lyme, and a long list of complicated problems that I didn't ask for. I never asked for this. I never wanted to be forced to have to do the job of my physicians. I never wanted to have to diagnose myself, and I never wanted to be put onto such complicated medication routines that I had to be hyper organized. I'm alone, no one else is going to do it for me.
quote: Don't give up...there is a good possibility that there is a very valid reason why this did not come to pass. [/qb]
You mean "a reason for everything?" Probably, but I don't know that their reason is ethical, rational or right. I will find out though and I'm going to call their office. It's probably not a good idea -- I feel intuitively that it's pointless -- but others I trust told me to give it another shot.
Absurd.. I don't know. I'll just ponder things for a little and it will be worked out.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by baileypup: MB,
I would feel like it's a slap in the face. I agree with seek, after a life threatening sepsis event, who wouldn't be scared!
Absolutely. I reacted initially assuming I'd just been dumped, but I'm going to find out if there were "practical" reasons before I leave my posts up. If I was wrong I'll remove the parts I wrote about being angry.
quote: I have so much respect for Dr. H., this disappoints me. Could you follow up with some questions as to why they will not take you as a patient, when you have not utilized all that is available?
That's how I feel. I want to know why.
quote: If they do not take you as a client, can you ask the reason, and why they feel your treatment failed...was it something you did, or something you need to change? They owe you that....
I will try to find out.
quote: Sometimes , when things like this happen and the door closes, it's because another path is meant for you. [/qb]
I sure hope so, I believe things will be worked out.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lou: When a patient has had a lot of treatment already, some doctors get gun shy and push him/her out the door. Difficult cases are trying, and in our current situation, trying gets doctors in trouble.
I agree, unfortunately something smells "off" in this case since they told me -- without hesitation -- they would prescribe what was needed. Truth be told they don't even have to do the prescribing. They just have to recommend what direction I take. I can get the prescriptions somewhere else.
quote: Not sure it is always the case that something else is meant for you, that you needed to move on. But sometimes it does happen. I went to a well known doc for a short time, but had to find someone else and it turned out that the well known doc did not know how to handle cases like mine, and the doc I went to next had a better idea of what to do. It wasn't the rescue I wanted because no one has it figured out, more a matter of at least not doing the wrong thing.
I hope you're doing better now.
quote: So, hope this makes a little sense and that you will find someone who can take you to the next step in your treatment.
BTW, I was pushed out the door of a doc who didn't want someone who had already been treated a lot and wasn't well. After more than ten years post diagnosis, I have had a lot of doctor experiences. [/qb]
Yeah, same here. Frustrating. The reality is, they needed to do IV from the start. A year of immunosuppressants and steroids? 25 years undiagnosed. Tremendous neurological symptoms? It wasn't my fault. It was their lack of knowledge or unwillingness that led to this. It's sad but I won't let myself be abused or left to die. I fought and I'll keep going to the end. I deserve the right care.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by glm1111: Hi MB,
So sorry you are having such a hard time. I agree with canefan and several others that have posted about treating for parasites.
I'll get to it at a greater length at some point. I improved so rapidly on IV Vanco, that's why I'm pushing for this right now.
quote: I was at deaths door after 4 years on abx including 6 mos of IV Rocephin and 2 years of IVIG. It took me 6 mos of 16 caps a day of strong herbs from The Monastery of Herbs and salt/c till these bas...ds let go.
I couldn't have been more shocked when they appeared in the toilet. The protocols you mentioned above for treating parasites, was not nearly enough IMO.
I'm glad things are looking up for you. I've not done years of anti-parasitics but I've done a lot along the way. I could do more though, and I appreciate you leaving options available for me here. I will get to it.
quote: You may have the Filarial Worm co-infection and need to treat more aggressively. Humaworm is not strong enough. Have you tried salt/c at all? It is VERY powerful and the parasites can't stand it.
I've been asked this a lot. I still have not, but I'm going to wait because I don't have the mental ability to withstand another 6-12-or 24 months doing therapies that I absolutely can't be sure will work. I need IV right now. I can't stand it anymore. I'll do the Salt C along the way but mentally I've gotta straighten this out before I can organize that plan.
quote: Hoping you would give this a try along with maybe some Parastroy to see if you get any reactions/results. Also Monastery of Herbs are excellent as well and saved my life.
They have specific herbs for Lyme, bart, babs, parasites etc. Persistence with antiparasitics is KEY. Thoughts?
Gael [/qb]
Thanks for the additional information Gael, it's always helpful.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
It probably was not personal. A few of my friends are physicians and they all say that they truly don't remember patients by name. Its just a file. Especially if you didn't see the doctor at each visit.
It probably has more to do with the fact that you haven't been a patient there in a while and you would almost be like a new patient with a long history to review.
If you want to put the theory of emotional blocks to bed you should try seeing an energy practitioner. Emotional blocks are subconscious, this is at a much deeper level that a psychologist would get at. It's beneficial on all levels, physical to emotional.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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METALLlC BLUE
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posted
I left a message since no one picked up at the office. I said "Hi my name is Blah Blah, my phone number is :BLAH BLAH, and my treating provider was L, I'd like her to give me a call and or setup an appointment. Thank very much."
We'll see how that goes. If that doesn't garner a response I'll call and speak to one of the people I have good rapport with in the office.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by unsure445:
If you want to put the theory of emotional blocks to bed you should try seeing an energy practitioner. Emotional blocks are subconscious, this is at a much deeper level that a psychologist would get at. It's beneficial on all levels, physical to emotional. [/QB]
I appreciate the insight. I've been advised to see an "Energy practitioner" but I have a hard time justifying spending more money when everyone here who knows me knows I need more IV Vanco or a similar drug, since I responded so well to it. I don't think a person with emotional blocks would get well on a medication like that.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:They couldn't help me because I told them that they were incorrect in the diagnosis and that I felt we needed to pursue something else. When they said "No, we're not going to pursue anything else" I said "Well, then we have nothing left to do here." It wasn't irrational, in the end I was right. I had undiagnosed Rocky Mountain, Lyme, and a long list of complicated problems that I didn't ask for. I never asked for this. I never wanted to be forced to have to do the job of my physicians. I never wanted to have to diagnose myself, and I never wanted to be put onto such complicated medication routines that I had to be hyper organized. I'm alone, no one else is going to do it for me.
MB, I hear you on that....unfortunately it's the sad state of our medical system.
My husband, who is never sick, was recently in the hospital for an "unknown" viral pneumonia. They gave him a drug, Valcyte, that was a miracle drug that he responded to in 24 hrs. Twice, they switched him off that drug, and twice he declined, taking days to recover, insisting that they could not culture the correlating virus to justify this treatment. Who cares, it worked, but the Infectious Disease Doctor would not listen, when we knew he improved on this drug, and cost him precious recovery time.
You have to be your own advocate, we have no choice! We walk a fine balance of advocating for ourselves and challenging those who have years of schooling and credentials. I am kicking myself for not speaking up more when I knew exactly what was working, but didn't want to step on anyone's egos or let on as to why I knew so much about all this stuff.
I think you have no choice but to determine "your" course of treatment, and then find a doctor who will support you. I wish you well...
Posts: 964 | From san diego | Registered: Oct 2009
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METALLlC BLUE
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Thanks bailey. I know I can be aggressive "sometimes" when it comes to advocating, even in front of LLMD's -- but never in my life could I imagine that this particular one would suddenly cop out and leave me hanging.
I don't understand. I tried calling again to speak to someone and they won't even take my call. It's like I've been blackballed.
Actually, someone just gave me some inside information that is starting to make some sense. Apparently someone on this board is copying posts of members who write "criticism" -- constructive or not, about this doctor and then sending these posts to this doctors office, indicating the name of the poster.
On a number of occasions many of you have heard me talk openly about my experience with this office. I've always been honest about what I observed and I've always been clear about how I felt or what I thought about my experience. I've discussed the pro's and con's that I felt best represented this LLMD's office.
In doing so, I've likely ****ed off some people. If that is the case and someone did report me, I won't apologize. I meant everything I said. The good, and the less than good. I've continued to recommend the office in-spite of shortcomings because I believe the intention is good, and that a lot of people get well and receive good care. Now? I don't know what to think. If I was reported and they didn't like what I had to say, then that's a psychological issue that he needs to work out, not me. However, maybe this has nothing to do with any of this. I don't know.
All I can do is stand behind what I've said previously and I hope that whatever has happened or is going on with that office gets better. People pay a lot of money and we deserve the very best care. We don't deserve to be belittled or made to feel like "we're" the problem.
If someone copied my prior reports, I'm actually grateful. Thank you for telling him what I think and feel. I would have easily said it to him directly without so much as blinking. It's the truth as I experienced it. Instead, I spent those appointments trying to focus on progress, not personalities, so treatment ideas and discussions were always the focus, not my opinion of the person. It wasn't until the unreasonable personality started to result in unreasonable treatment ideas that I spoke up.
So, with that said, I'm moving on and going to follow-up with some other doctors that were recommended to me via PM. I'll be honest about them publicly too no matter what type of trouble it gets me into. People deserve to know the truth.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I found another physician who treats nearly the same as Dr. H and has decided to help me (And he uses IV antibiotics when necessary). I just wanted to let everyone know.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
That's great MB! I hope that this doctor is a great partner that will work together with you until you're 100% fixed!
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Hi MB! I apologize for this very tardy response. I must not have come back to this thread. Just did a search for Medsonix tonight and found your question.
The best information on it is in the thread - "What Medsonix Has Done For My Daughter." We tried it based on the experience of Orion's daughter.
Medsonix therapy reduces inflammation and pain, and increases blood circulation. From our experience, I think it helps the immune system begin to work again.
We have gone 3 times, in April, May and July, about a month apart. My daughter has made amazing propress in that time, as compared to the prior 9 months. She is still on antibiotics, supplements, and an extensive exercise routine.
So many things that fall apart with Lyme are coming back. She is driving, able to sit up first thing in the morning, has increasing energy, and is living pretty much on her own again. It seems that she may really get better, as in having a life.
The difficult part may be getting there; Medsonix is only in 2 locations at this time, Las Vegas and Naples, Florida.
The first trip was pretty hard on my daughter, as she was not up to traveling. However, she has been getting much better, and on the last trip, the plane travel didn't cause a crash like it had previously.
The other consideration is the cost of traveling, and whether you are well enough to travel on your own, or need assistance.
Several people have done this as a stand alone therapy, and I am hopeful that my daughter will be off antibiotics very soon, and can continue with this, along with some herbs, supplements, etc.
You may have begun IV therapy, and I hope it is having good results for you.
If you can find a way to add this to your program, give it a few tries - 2 or 3 visits. Thanks for the documentaion of your Rife treatments.
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