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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, please, everyone who has had experiences with my LLMD, please give your input. My intention with starting this thread was in no way intended to focus on my LLMD, but rather to find out about other patients and their experience of having worked with someone, -- anyone, whom they eventually lost faith in, or had to move on from. I only gave my experience as a reference point to start.
It's a scary experience for me to venture off on my own, after all we're talking about someone who saved my life. When I see him, I feel like I'm talking to my father. I feel the tension daily in this decision, as though I'm betraying him. I feel conflicted often, and I've been this way for a number of years. I was really afraid, that's part of the reason I stayed. Like so many of you I had nothing, no money, no family, nothing; I needed to cling to someone.
I'll never forget what he did for me, but I just don't believe him anymore. I just can't ignore all the research from the other physicians treating this disgusting illness and the fact that in 6 years I'm still home most of the time. Maybe I have a co-infection, maybe I don't. There could be something else wrong on top of Lyme. I need to find someone who can help me along on this new part of my journey, who can meet me where I am.
I'm told we sometimes outgrow others around us, our friends, sometimes our partners, and....sometimes for Lyme patients -- our doctor.
Maybe I'm angry, you know? Maybe I just wish it could have been easier. This illness takes away so much, it forces us to make such hard decisions. This was one of them. We lose so much. I don't know about you, but when I talk here on this forum, I'm doing it to save my life, that's all... that's why I'm here now and I can't do it alone.
[ 20. April 2008, 06:18 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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just somethings to consider.
1. If it weren't for this doctor none of you would know you had chronic Lyme and it still wouldn't be on the radar.
2. Posting what your LLMD is doing for you is super duper really really BAD news. No better way than to feed the sharks reading these boards than to post your FORBIDDEN protocols. Might as well just stick a fork in them than do that.
3. Rather than blame a doctor when things don't go as we plan or we hope they will, we need to realize some of us.. many of us... are going to remain chronically ill forever no matter what is done. That sucks, but that is the way it is.
4. If you are not happy with your condition, blame the IDSA.... not the doctors who are risking everything trying to help you.
5. REMEMBER- There is NO known cure for Lyme disease. There is NO known cure for coinfections. We do what we can.
6. LLMD's are trying. None of them know everything. But your other choice is a duck. Ducks often know nothing. And some ducks know something and won't help you at all.
7. If a LLMD can't fix you, maybe you are not fixable. Rather than crush the LLMD over it, find another to get a fresh look at YOUR situation to see if they can help improve your plight.
8. Staying with a doctor who isn't improving your situation isn't their fault.... it is yours.
I would love to see this entire post deleted from top to bottom. LLMD bashing is NOT a sport and can't possibly do the Lyme community any good.
If a LLMD hasn't helped YOU it does not mean they haven't helped 500 others.
This doctor was bashed horribly by a poster here a while back... then the wolves jumped in to eat his flesh.
Truth is, if you've been here long enough you'd know...
That same poster- banned several times from here- has systematically bashed every doctor they've ever had and beat them in the ground.... and caused HUGE harm to some very good doctors... and has limited YOUR ability to get treatment by doing so.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Before you even begin reading my responses, I want you to know that as a result of your post I have gone back and edited all my posts. I removed all the places I said my physicians initials and replaced them with "My LLMD" to better protect him. I hope this helps and demonstrates my true intentions.
quote: Just somethings to consider.
1. If it weren't for this doctor none of you would know you had chronic Lyme and it still wouldn't be on the radar.
I've thought long and hard about what you said in this post, and so I'm going to answer it in respect to how I feel, and tell you which advice I'm taking, as well as the parts that I'm not, and I'll do my best to explain each.
You're right, I would not be diagnosed without this physicians help.
I mentioned this earlier in the thread:
"He was the first doctor to believe me and he treated me. He obviously saved my life, as I'm around 35-50% back and forth, where as I was dying when I met him."
I also said this:
"for the first time, since being a little kid, someone said "Yes, you are sick and it's something that isn't your fault. It's not a psychological problem, and it's not something that needed all these steroids you were prescribed. You have Chronic Lyme Disease."
I also said:
"The guy gets a lot of people well, but just as many people remain ill because of his lack of attention to the ILADS broader guidelines. He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights."
So I certainly want to make clear that he's a physician worthy of respect.
quote: 2. Posting what your LLMD is doing for you is super duper really really BAD news. No better way than to feed the sharks reading these boards than to post your FORBIDDEN protocols. Might as well just stick a fork in them than do that.
I've done my best to keep his annonymity I really feel it's important to express what treatment I've had and the serious concerns I have about how this physician treats patients. They are very valid concerns and other patients should be informed. BettyG will make sure they are informed now when he's placed back on the list. Many posters mention the treatments they've done, and I do not feel I've violated any rules or disrespected nor endangered my physician by expressing that. However, I did decide to remove my condensed version after reading your response as it was not needed since it was redundant.
quote: 3. Rather than blame a doctor when things don't go as we plan or we hope they will, we need to realize some of us.. many of us... are going to remain chronically ill forever no matter what is done. That sucks, but that is the way it is.
I don't blame him, or at least I don't think I have. My intention was to simply state the reasons I haven't improved and things I was told that are in opposition to what ILADS protocol states, as well as what other physicians as a larger whole say. I'm not well because a tick bit me, plain and simple, and my parents were not there to care for me, and thus no one knew I was infected. No one is to blame for that.
Earlier in the thread I said:
"Many people get well under my LLMD's care. I got "better", I just didn't get well, so take that as you will."
I believe an answer exists and that I will not remain chronically ill for the rest of my life. I'm young, and I'm strong willed. I will find an answer. The impossible just takes a little longer, that's all.
quote: 4. If you are not happy with your condition, blame the IDSA.... not the doctors who are risking everything trying to help you.
I don't blame anyone for my condition, I blame Lyme disease and whatever other potential infection I have. I could blame myself possibly since I walked through the woods. I was a child though, and it was only a few years after the bacteria was even discovered. The IDSA has heard from me countless times, as I think you might have seen. My representatives, senators, everyone. I even wrote the President a number of times. I do hold them responsible for not furthering the research in order to resolve Chronic Lyme Disease but not that I have the illness. I also hold them responsible for not furthering research on other tick-borne infections, but as with all scientific revolutions: politics and financial interests become corrosive, and old paradigms collide with new theories and eventually only one can survive.
quote: 5. REMEMBER- There is NO known cure for Lyme disease. There is NO known cure for coinfections. We do what we can.
Absolutely, I agree. I believe a solution exists, I just don't know anyone that has discovered it. It's just waiting to be discovered in my opinion.
quote: 6. LLMD's are trying. None of them know everything. But your other choice is a duck. Ducks often know nothing. And some ducks know something and won't help you at all.
I absolutely agree, and I certainly wouldn't claim otherwise! What you're saying is a fact that can't be debated.
quote: 7. If a LLMD can't fix you, maybe you are not fixable. Rather than crush the LLMD over it, find another to get a fresh look at YOUR situation to see if they can help improve your plight.
I believe I am fixable though I don't believe I injured or attacked (Bashed?) my physician for it. I've seen improvements, but I do believe the possibility of co-infections, but my physician did not think a co-infection was involved in my case because he says chronic co-infections aren't a problem in his opinion. He's seen almost none, though perhaps maybe one or two. Perhaps he's right though, maybe I only have Lyme. With the Levaquin and Bactrim -- which were not prescribed by my LLMD, I saw a massive improvement but the treatment was very short, only a few weeks. The Levaquin and Bactrim were prescribed by the Hospital when my PICC line led to sepsis, which I don't blame on anyone either. It's possible the IV or oral pen helped, but I think the others caused my progress, I just can feel it deep down, I just can't prove it.
And you're right, I think a new perspective is absolutely critical.
quote: 8. Staying with a doctor who isn't improving your situation isn't their fault.... it is yours.
I do think I'm responsible but I don't think beating myself up over it is right. I mean I was a child when infected, and I was alone through all of my journey, and when I did find out in my early 20's, I totally let myself go, and clung onto my LLMD. I just didn't know what else to do. I felt paralyzed.
I am responsible. I couldn't have done it differently though, or I would have.
quote: I would love to see this entire post deleted from top to bottom. LLMD bashing is NOT a sport and can't possibly do the Lyme community any good.
I understand. I will not delete the thread. I feel that what has been said is actually of benefit, not negative. People need to know the truth and now they will thanks to my post. BettyG wouldn't have known any of this, and I wouldn't have known to tell her, if I hadn't spoken up. Now other patients will be armed when they go to the seeking a doctor section, and she tells them these facts. Also, I think if I'd done something wrong, Betty would have informed me -- I think? I'm not sure.
quote: If a LLMD hasn't helped YOU it does not mean they haven't helped 500 others.
I agree, and here is something I said earlier in the thread:
"The guy gets a lot of people well, but just as many people remain ill because of his lack of attention to the ILADS broader guidelines. He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights."
I also said:
"As I said above, no doubt, he gets a lot of people well and thank god he is there!"
quote: This doctor was bashed horribly by a poster here a while back... then the wolves jumped in to eat his flesh.
That's unfortunate. If that person's intention was to cause trouble and to harm my LLMD, then they should have been banned. That's unacceptable in my opinion.
quote: Truth is, if you've been here long enough you'd know...
I began posting a few weeks ago. I've had an account for awhile but never posted or read the forum. I joined only to post in the seeking doctors section in order to find a doctor for another patient.
I know now.
quote: That same poster- banned several times from here- has systematically bashed every doctor they've ever had and beat them in the ground.... and caused HUGE harm to some very good doctors... and has limited YOUR ability to get treatment by doing so.
What an awful thing to do. I'm glad that person was banned.
quote: Again.. just something to think about.
I know you don't agree with me on a lot of issues but I really do appreciate your response and I did make some changes to my thread because of your post. I'm also going to make another change, I'm going to put "LLMD" or something else in place of the initials to even further support my doctors anonymity. I hope this appeases at least one of your concerns, and I've asked other members to do the same.
Also, I've seen you post a lot, thank you so much for being so supportive, I've gotten some positive things out of them, and you sure know how to light a fire! The ISDA is going to pay with someone like you inspiring everyone! In-fact I wrote the Energy & Commererce guys Palone, and Dingle? -- I think that's them? I wrote them. [tsk]
[ 21. April 2008, 04:47 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok, all the places I listed my LLMD's initials have been changed to "My LLMD". I also edited all of the quotes of people I quoted, changing the initials in them as well to the same thing.
I ask everyone who has posted to please edit your posts and remove my doctors initials, and to use "That LLMD" or something like that.
Thank you, and keep responding! The conversation has been useful, and you're all so kind.
-------------------- 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.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Please do not remove this doc from the LLMD list.
I think overall that you hvae to be comfortable with your LLMD. If your not time for a change.
Posts: 3905 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
to ALL reading this list, i added this llmd BACK to my list...hooray
for all of you in the area and who is receiving treatment from this llmd!
i'm also adding this direct link of comments after their name/address.... *********************************
LEAVE THIS POST HERE! ***********************
MEMBERS CAN WEIGH PROS/CONS THEMSELVES, but be an INFORMED patient when they chose to go to any of our LLMDS nationwide!
this was recommended by someone else too; LEAVE IT HERE!
i'm going back up to the top and DELETE MY NOTE REMOVING THIS LLMD!!
I make mistakes too; SPUR of the moment decisions without consulting the others w/nationwide llmd lists!
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thank you, I hope this appeases many of you. Also, I have further questions for the group.
I'm considering seeing Dr. H, like I said -- in Eastern MA, but I'm still looking for information on her.
I've been told by conflicting sources that she "will" treat my specific health issues, but then others are telling me she may not, even though she's treated countless others!
If I can't get a confident opinion of her then I'm considering going off on my own to self treat With the ILADS guidelines and a lot of really well educated people behind me and doctors to follow me/lab work, I think I'm more than qualified now.
What experiences do you have with Bactrim? What experience do you have with Levaquin?
I think I responded extremely well to both within 2 weeks of using both, I can't be absolutely certain since other medications were clouding the
-------------------- 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
Well, I figured I'd provide an update to this. Here was my last appointment with my LLMD on July 11th, of 2008.
Here is my documented account of my appointment with my Dr. today:
I saw Dr. __ today, and I have quite a bit of information to present. Upon walking into the appt, Dr __ asked me how my trip to Italy was. I answered honestly and told him my 3 months added up at most to 1 week of actually visiting places and enjoying the country. The other 10 weeks were spent inside sick. He looked at me with empathy and disappointment.
I told him, it's unfortunate, but I did my best. I "got out" like everyone has been telling me, so at least I did it.
He agreed and asked me how treatment was going, and whether or not I was still on the Tetracycline. I pointed to the paperwork which I had given him. Before each appt I write a summary indicating the severity of symptoms, any special notes indicating new symptoms or changes in medications, as well as a lifestyle history -- including limitations and patterns I've been able to perform, including exercise, outdoor activity, etc.
I pointed out the special note section and showed him which medications I had been on and off. The summary basically amounted to Azithromycin and Amantadine being worthless orally, and Tetracycline therapy causing a significant backslide that has continued since at least the spring of 2006.
Dr. ___ asked me if I was currently on the medication, and then said "Oh never mind, I see here you stopped June 16th 08. So you've been off treatment for about 3 weeks, is that right? I said "Yeah, about 3 to 3 1/2 weeks.
He then said "And how is that going, being off the medication?"
I said "Well, it's going quite badly really, I'm backsliding fast. About a week off the antibiotic and my health drops from 40-45% to 35%. That difference of 5-10% is huge for a Lyme patient, especially when you're riding that fine line between being homebound and able to go outside -- even if symptomatic.
Dr. ___ said "I see, so where are we would you say? Are you stuck? Is it a plateau?" I said "It's no longer a plateau, it's actually a decline. I am literally seeing an advancement of old symptoms coming out over the months, meaning the infection is not suppressed or even being killed, but rather actually active and moving quickly.
Dr. ___ seemed puzzled by this, and I said "You told me this wouldn't happen, but unfortunately even with 72 months of antibiotics, including some heavy IV, this infection is not dying. It's resistant, and persistent.
Dr. ___ then said "I see, and you had no response to the Azithromycin and Amantadine you said?
I said "Yes, I respond to Tetracycline like clockwork. If I take it, I can expect a herxheimer reaction in 7 days, a peak of suffering at about 12 days, and relief by the 14th day, with ongoing improvement, until I reach about 45% functional, then the medication loses it's ability to advance me further, and the antibiotic actually begins wearing out. Initially it worked for months, suppressing symptoms and helping me improve, but as time passes the time-frames of "improvement" are shorter, and the medication is weakening.
He then said "How did you do on Biaxen and Plaquenil? Did we do rounds of that?"
Yes, we did 3 cycles, 8 months each, and every cycle was a treatment failure. No response was seen, just like with the Azithromycin and Amantadine.
I then said "What would cause a bacterial infection to respond well to Tetracycline, but not to Biaxen, Zithro, or the agents of Amantadine or Plaquenil?
Dr.___ said "That's a very interesting question that I've been asking myself in your case, and I think it could just be that we're maybe not dealing with Lyme Disease -- perhaps there is another infection, or maybe a "Lyme like" infection.
I then said "Or, it could be actual Borrelia B, which is resistant to those medications, because frankly I know this is Lyme Disease. I'm certain of that.
Dr. ___ then said "Well, you know, this is why the whole "co-infection" thing has blossomed. With symptoms not improving in a portion of patients, it's become common to consider the possibility of another infection, and that very well could be what is going on, but I don't think it's with Bartonella as we know it, or Babesia. These just aren't things I see."
I then asked "So you think other infections can be involved, right? And his response was "Research has shown that H....
And I said "HHPV6, yes?"
And he continued "Yes, that's it, and other viral infections as well, such as ...
"Epstein Barr...."
And he again continued "Yes, that too, and how were your tests on those? Did with test you for HHPV6, CMV, EBV, and these others?"
"Yes we did, there they are....."
"Ah yes, I see them here in the notes, so this isn't the issue probably, but you had an old IGG infection with EBV, but that I can't do anything with, I can't give you any medication for that since I have no options. There is no medication available for that yet."
"I see, well -- I did perform further testing through Igenex."
"You did?" he asked?
"Yes, and I know you didn't want me to waste the money or time on this, but I also am running a stained smear through Fry Labs. I feel it was necessary"
"Oh, well then it will come back positive." -- His look condescending, and his intention obvious. I could tell he doesn't like Fry Labs, and he feels they produce too many false positives.
"Oh come on now, that's not true. I've talked with a very large portion of patients who have gotten testing and those tests have come back negative, besides I'm doing a smear......"
"Well, you would know better than me, I don't look at those sites."
"Oh come on, you have 10,000 patients, you said so yourself, you know far more than me. Don't be like that."
"Ha, well let's look at the Igenex?"
"All the testing was negative for the 6050 and 5090 panel, except for the Western Blot, and IFA."
"Yes, I see here the indeterminate IFA, which is of value, because it tells me there is an ongoing response."
"Yes, but you'll see...."
"Oh...this isn't good. Your Western Blot is a problem here."
"Yeah, it's not good. When I first received it, I saw the same thing you're looking at. This isn't a Lyme-like illness. This may or may not be a singular infection -- but neither of us can deny that there is one infection which is absolutely borrelia burgdorferi, and it's not an unusual strain, and is and active infection. It's producing IgM antibodies, and my IgG is only showing 4 indicators. The entire IgM is a mess."
"Yeah, this... isn't good."
"You think? I've been saying this for awhile, this isn't the right treatment for this particular infection, and now we have confirmation. And the report is accurate. It's not a false positive, because if you compare the other Western Blot done through the other 3 labs, - Lifelab, Quest, Labcorp the same bands are showing up and overlay correctly -- even though those were all negative by CDC standards.
"Yes, this is a problem, and I don't have a problem with Igenex. I believe their Western Blot is good and accurate, I've had enough experience with patients to see that."
"So, what are we going to do then?"
"I don't know, have you used IV Vancomycin or Penicillin?"
"Yes, you remember, in 2005 I had line-sepsis. The month following the line-sepsis was significant in progress, and that progress lasted an entire year. However I had an allergic reaction and we haven't returned to it since."
"An allergic reaction? How do you know?"
"Well, you know, the swollen balloon sized hands, face, and hive like rash across my entire body -- plus the diaharea gave it a way."
"Well, couldn't it have been a symptom of a Herxheimer reaction?."
"Oh no no no, you know an allergic reaction from a Herxheimer reaction when you've been treating for as long as I have. This was absolutely an allergy, and I believe it was the Penicillin, not the Vanco. We can test for it though, if you decide to ever go the Vanco or Pen route again."
He said "Yes, we should test for it to find out which it is, but I think it's an option to do in the future then."
"Well then, maybe, but it certainly won't be done via a PICC line if we return to it."
"............."
"Well, are you surprised? I mean really, obviously I developed line-sepsis because I didn't have adequate local support, and the nursing staff wasn't thorough enough."
"........ So, what do you what to do?"
"Well I think a chest-port is the obvious direction. I think the significant reduction in chance of sepsis is worth the risk of doing a procedure to install one."
"Ok, well we could do that."
"No really, I don't want to do that if I can avoid it. It's an option on the table, but really the last time provides me with plenty motivation to avoid it."
"Ok, well, we can try Ceftin instead of the Pen. It's the direction we often go when a patient is allergic to the Penicillin."
"That's fine, I've heard that from Dr. H, Dr. H in MA, and others. You know though what I think would be a really potent drug with less risk? IV Azithromycin combined with Minocycline and perhaps the Plaquenil."
"Yes, that would be but we'd have to use much higher doses, and..."
"Well, I don't actually want to do it, so it's not a problem. The IV Vanco will be real strong, but higher risk"
"What symptoms are you finding advancing most?"
"Well, I'm getting a lot of psychiatric symptoms, especially sleep abnormalities, shooting pain, and a lot of Fibromyalgia like symptoms in the skeletal muscular system. The CNS is shot, there is a lot of pain, a lot of abnormal visual disturbances too, like seeing stars when I stand or move around. The cognitive and psychiatric symptoms are getting serious though. I'm having "break downs, like -- I'm losing it"
"Are you having hallucinations, or anxiety or panic, what about numbness, tingling, neuropathy like symptoms.?"
"A lot of anxiety, yes. No real numbness or tingling lately. It's less of a problem overall here. Well, I don't know about hallucinations, but I'll tell you this, I've been seeing my counselor and recently we had a discussion and she told me that she was shocked by some of the topics and things I discussed with her. She said she was shocked not because of the content, but because she'd never heard me talk about any of these things before. She said after all these years, she should have known some of the things I brought up, and I found that highly disturbing, because in my head -- I remember telling her all these things. I remember telling her about family, about different people, and she claims that I never once brought up this, or that."
"Oh, wow, that must have been scary."
"Yeah, well just a little bit, because I don't know what's real or what memories are accurate, if that's what's been going on with me. That's insane."
"Yes, that's bad. When you say sleep problems, do you mean falling asleep or staying asleep?"
"Both, I wake probably every 5 mins as the disease progresses."
"I see you're still on the Ativan, how is that going?"
"Well, I'm addicted, so... not so well. It's working somewhat, but gradually losing potency. It does help me sleep, but I often have to double the dose in the morning if it doesn't work overnight. Meaning I wake maybe at 8 a.m. exhausted and miserable, and have to take another dose and sleep from 8 a.m. to noon or later."
"Can you sleep through the night with it at all?"
"No, but it's most certainly the infection driving the issue, because the symptoms progress in an order only associated with other symptoms, like abdominal pain, psychiatric symptoms, shooting pain."
"I see, so how is the bowel doing, are you having a lot of stomach problems?"
"Yeah, enough, but they're under control with the Nexium and Pentasa. Did you know Dr. Cooke retired?"
"Uh, and how do you feel about that?"
"Not good."
"So what are you going to do? Who are you seeing?"
"No one, but my symptoms and disease are under control. What I know for certain now is that Lyme Disease is most certainly driving an autoimmune disease process, and the Crohn's Disease is absolutely connected. It goes away as I treat the Lyme Disease, and returns only when the symptoms of the Lyme return. They are one disease, I know that."
"So are you planning on seeing someone?"
"I'm considering someone, yes, but I had to call Dr. Arenas to figure out what to do, because you know as well as I, that a Chronic Lyme Disease patient is going to get ****ed over by switching from one G.I. to another in a case like this."
"Yeah..."
"Dr. Arenas asked if I'd seen 3 or 4 doctors that he listed, and I had -- each had given me **** and told me "Nothing is wrong with you." -- which is fine, because obviously they're not paying attention to what I'm saying. There is one guy, a Dr. Weinstein that was recommended, and other people told me he's good, that he's the most laid back of the G.I. physicians at Mercy. He'd probably be of value Dr. Arenas said, and if he wasn't. Dr. Arenas told me to call him and he'd help me out."
"Ok, good. So this bowel issue, there is a drug called Rifaximin. It's been used since the 1970's, primarily for travelers, dealing with infections in places like Mexico or elsewear. It's been found to be a preventative of leading to diarrhea, and in studies, it was surprising to see that patients with irritable bowel symptoms, or problems like you're having, that they improve or go a way."
"Well, that's fine and all, but really my bowel issues are on the low end of the spectrum in respect to the others. It wouldn't seem ideal to try treating just the bowel."
"Well the drug is related to Rifampin, but it doesn't pass through the gastrointestinal wall, and is not a systemic medication."
"Uh, well then that makes no sense. Why would we use that to just treat the bowel, when I have about 50 other symptoms that are advancing, unless we were going to just go after the infection itself leading to the problem."
"Well I suppose we could do that, but we could give this Rifaxamin a chance, see how you do and then go from there."
"I really don't think that's a good idea, and I think we ought to go with Rifampin if we're going to do anything, because frankly, if Rifampin has an effect on Lyme Disease, which is being reported , then it would be sensible to use something that may be of value to the overall picture."
"Ok, well we can do that, maybe. It is reported, that Rifampin has an effect, perhaps because of it's intracellular activity."
"I think that's what we should do. I think Rifampin is a fabulous idea, and I think we should create a combination therapy out of it."
"Ok, well we can take Rifampin, and put it with Tetracycline."
"Oh no no, I don't think it would be useful to continue hitting the disease with a drug that is clearly exhausted. The only time the Tetracycline has been useful recently is when I did something that you didn't advise. I know I shouldn't have, but if you look at the notes, you'll see that I did progress when I boosted the drug to 2 grams per day, instead of the typical 1.5gm. "
"I see, but it worked?"
"Temporarily, yes. But it's not going to continue, because it was losing power right before I stopped using it. I had to stop antibiotics for the summer, which is what you usually want, but I also wanted to run the Lab with Fry."
"Well, then what do you think?"
"Well, I know you're not going to like this, but you were the one who did bring it up awhile ago, so here goes. Remember we discussed the idea of combining Minocycline with Zithromax and Plaquenil, in patients that weren't responding to the Zithromax and Plaquenil or Amantadine alone?"
"Right, yes."
"Well, it's not uncommon, as you've noted, to combine Minocycline with Rifampin. And if Tetracycline has worn out it's welcome, wouldn't it seem useful to take another cycline with a different mode of action, and to give it a shot?"
"Well that could be done, yes. The Minocycline I worry won't get into the cells however to the degree I want."
"So add Amantadine or Plaquenil, why not, right? It will work the same way. Afterall if you wanted to do the Tetracycline alone, which we obviously know gets into the cell, then add Rifampin, why not combine both with that. It should provide both drugs a more benefit effect in accessing the intracellular departments.
"Ok, yes we can do that. Are you experiencing rashes by chance?"
"Yes, I guess, I mean I've seen them on my side here on the left, and I've been seeing a lot of disturbing skin manifestations, but my skin is so damaged from the steroids, and I'm so used to seeing abnormalities, that quite frankly I can't tell you what "is" abnormal. I see that I keep having bruises, and I have this butterfly bruise on my neck that has been there for many years now. I have this bruise too over here on the back of my arm. "
"Yes, I see that, and the neck, ok -- so those are certainly abnormal."
"Do Lyme patients really get these bruises? I've never associated bruises alone as apart of my illness I guess."
"Yes, patients have them quite often."
"And they don't hurt. I can push on all of these, and nothing is there. I feel no pain, no unusual texture or anything."
"So when would you like to begin this routine? We could start you now during the summer, but you'd have to be extremely careful with the Sun, or we can wait until the summer passes and let you go without antibiotics for now. We can see how far down you go. You should level off and it shouldn't continue to decline like this."
"Well, to be honest, I don't agree. I think we'll see a continuing decline, but, I think it wouldn't be wise right now to start Minocycline. I think it would be ok to let things go without antibiotics, but I do think the disease is going to worsen and be ongoing. I'm not interested at the moment in diving into a new routine without preparing and understanding how I want to organize my life around it."
"Well then, after labor day I could see you, and we can reassess then what to do next. Would you be willing to come back in November?"
"I don't think so, I can't see driving this far to come back when I won't be starting the treatment until Fall. 2 months just isn't worth it."
"How about December?"
"I just don't see it. I say let me figure out how I'm going to go forward on this treatment. Let's see how much worse I get. If things get too bad I'll start Tetracycline back up temporarily, and then do the other regimen."
"Ok, well we'll leave it open ended for now, just make sure to call me at least one month in advance so I can fit you in.
"What do you think about having me get another Brain SPECT?"
"Well, when was your last Spect?"
"2007, I think."
"Are you sure? I have 2005, I saw improvements here, oh, but they were still abnormal."
"Well maybe it was 2006, yes that's it. It was normal in 2006, but with the progression of symptoms the way they are, I'd be concerned the illness is actually reverting back, and this is a problem."
"Well I don't have a problem with you getting another Brain SPECT, but I just don't think it's worth the time. I'd be very surprised if it was advancing that fast again."
"Well, we were surprised by the IgM, so I would think it's something we should consider in the future. Even if it's fine, it just seems reasonable to me."
"Ok, "
"And about the E-mail updates? You've stopped taking updates. This "every 6 months" thing isn't going to work. Look at how thin it is. I've had to explain everything at length, and it's taken up a lot more of your time and mine."
"Well it's just that I've gotten overwhelmed with so many e-mails. Why don't you go ahead and send me the updates, just fax them."
"I can't do that, I don't have access to a Fax, but I can send them by e-mail if you'd be willing to receive them. I'm not even asking you to read them, just peruse them quickly, pop them in a folder and we'll discuss them later. It's either that or I have to organize 6 months at once."
"Ok, if it's like that, then just go ahead and send them to me, and I'll do that."
"Alright, that works for me. "
"So I saw Under Our Skin. You did a good job. It got the point across."
"Thanks, so when did you see the movie?"
"Recently."
"How did you get a copy?"
"Well, I bought one, and I'd seen it earlier."
"Where did you get it? I've been having patients asking me how to get it, and I don't know exactly where to send them."
"Well that's easy, just tell them openeyepictures.com/underourskin/dvd"
"Oh ok, great."
-------------------- 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
So there you have it people. I'm still working with him, in-spite of my test results coming back from Fry, positive. Which of course is of not value to him since had it been negative, it would be meaningless, and had it been positive, to him it means it's even more meaningless. It's like accusing someone of being a witch, and tossing them in water. If they drown, they were innocent, but if they swim they're a witch!
I was sneaky though, I know BLO is part of my problem. It's so obvious now. So I did convince him to go with Rifampin and Minocycline to start, plus I have some other anti-borrelia, and anti-BLOW treatments in the works that I'll combine.
And I guess this blows a lot of your opinions out of the water regarding him using IV. Everyone says he doesn't. Well, he does. He just doesn't want to get screwed, so he refrains from using it as much as possible. It's not even a matter of how sick you are, it's a matter of how well he knows you, and whether his ability to practice will be threatened should something happen to you. With me, he knows I'm not going to turn him in or cause trouble. I know how this disease works, I know you get the **** end of the stick sometimes even when you do all the right things.
Well, I performed the Bactrim Experiment I said I was going to do. I didn't tell my doctor about it. We all know he said Bactrim had no effect on Lyme, and perhaps he's right. Dr. H in NY agrees with him, that Bactrim has no effect on Lyme -- but it "does" have an effect on Bartonella, and BLO (Bartonella like organism) defined by Dr. Burrascano.
I performed the experiment, 800/160mg x 2 with Bactrim for 10 days. I stopped earlier than 14 days do to a potential allergy developing. I had a debilitating herxheimer reaction on the 7th day, and my symptoms and health began to improve substantially on the 9th and 10th day.
So, Bactrim works.
Next on my list is Levaquin. I'll perform a 2 week experiment there too This will hopefully confirm that the 2005 Bactrim/Levaquin combo wasn't a mere coincidence, and that it really was one or both of those drugs that improved my health, and not just the IV Vanco or Oral Pen by themselves.
Seriously, I swear to God I have to usually go into my appointments like I'm planning a presentation before a billion people, to convince them and persuade them that I'm correct in my assertions and hypothesis. It's frustrating, but I do what I have to.
-------------------- 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
Hi MB -I read most of this post - forgive me reading is not as easy as it use to be.
All I kept saying to myself was Bart and or Myco -
Confused though - maybe I misread this - but I remember Rifampin being brought up as a tx - are you going to try this? From someone who has had some of the same sx - it was the additon of Biaxin and Rifampin that made my thinking more logical and "normal".
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I guess you are seeing Dr. D in Boston? I've heard mixed things about him. He may be right tho, a lymelike organism. Like mycoplasma or something.
Find the posts of barksplinter. He believes a Groshong catheter is safer than picc or port. If tetracycline worked, maybe IV doxy would work. A thought anyway.
I like Dr. L in NY (Armonk). He has helped everyone I've sent him to. He's very smart. Consider him.
Posts: 2276 | From united states | Registered: Jun 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: All I kept saying to myself was Bart and or Myco -
That's what I've thought too for quite awhile. My Fry Lab just came back with Hemobartonella or Mycoplasma spp
quote: Find the posts of barksplinter. He believes a Groshong catheter is safer than picc or port. If tetracycline worked, maybe IV doxy would work. A thought anyway.
That's a good idea, I'll look further into the Groshong.
quote: I like Dr. L in NY (Armonk). He has helped everyone I've sent him to. He's very smart. Consider him.
He's the best LLMD in the world at the present moment based on the research I've seen. I would most certainly consider him, but unfortunately for me the cost is unbearable. However, Dr. H in NY has given me the "go ahead" if I want to see him, and he said he'd accept my current insurance.
He's not seeing anymore patients now unfortunately who take Medicare. For now I'm staying with Donta, since I already got good insight from other LLMD's regarding what treatment to pursue.
I have plenty of Levaquin now, a back-up supply of potential Bactrim, if the possibility arose to try again, and with Donta I'll pursue and use the Rifampin and Minocycline.
I'm going to combine the Rifampin, Minocycline with Amantadine, then add Nutribiotics GSE, Dr. Zhang's HH, Coptis, and Artimesia, as well as NAC, ALA, ALIVE by Nature's W.
If the Levaquin trial goes well, I'll include that in my routine. At the end of 12 months (I may switch some of the Zhang stuff around based on my discussion with him or Dr. H), but if at 12 months I'm well, I'll then begin using my EMEM3D2 Rife machine and **** all over the remaining spirochetes that may remain in the joints.
but I remember Rifampin being brought up as a tx - are you going to try 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.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't do abx. I'm a very complicated case of MCS/severe fungal issues. So I'm stuck with alternative therapies. However I wish you could see Dr. L. I interviewed him at one point (for an article). He just seems really brilliant, and the people I've sent to him, he has documented very thoroughly. He gives what is necessary. He makes REALLY good clinical decisions.
If I thought I could do even 3 mos of abx (honestly can't, and it ain't being a wimp) I would go to him straightaway.
If they ever figure out a triple combo therapy (studying mice) that actually kills borrelia, I may try it. I'd go to Dr. L.
I personally don't send anybody to anybody else but him.
I don't know what insurance he takes.
I've heard mixed about Dr H. I don't trust his enthusiasms. Esp. re: Cowden herbs. But you do the best you can. Dr H is better than Dr D.
I would also suggest adding alternatives to your abx if you can. IVIG or hyperbaric if you can.
PS I should add--I spoke with a Dr. H in Texas and he says he is working to get a lab going where they actually culture borrelia strains and find out abx sensitivity. If this comes off think what it would mean. The problem is, look at your history. A lot of trial and error while your body has to endure all these abx and detoxify all the drugs. Meanwhile you don't know what you're hitting and you keep trying this or that. Its a crapshoot. Its unfair and difficult. I sympathize with you. Don't give up.
[ 05. August 2008, 10:06 AM: Message edited by: oxygenbabe ]
Posts: 2276 | From united states | Registered: Jun 2004
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Please do not feel badly. It is NOT your fault. This kind of thing happens to lyme patients all the time.
I have a friend with Lyme who had been in treatment with a doctor for 11 years. She would make some improvement and then she would backslide.
This went on for 11 years!!!!
She finally decided to change lyme doctors and she is now with a very prominent lyme doctor in California.
He immediately tested her for coinfections (her previous lyme doctor never had) and she has babs, bart, and erlichia!!!
He started her on treatment for coinfections and she is already feeling better than she ever has in 11 years. She's only been with this doctor for a few months now.
Switch to a better doctor and I am sure that you will see improvement in your health.
Lymer
Posts: 63 | From Humboldt County | Registered: Jul 2008
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bettyg
Unregistered
posted
sent oxygenbabe a pm to delete drs. last names and to use initials only.
mike, thanks for your detailed update; must have taken you way over 60 minutes to type this...
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tailz
Unregistered
posted
I've lost faith in all doctors, truthfully - not just LLMDs.
I see a white coat or stethoscope or blood pressure cuff or chart or even smell rubbing alcohol, and my body reacts as if they are conspiring to kill me. Ordinarily I would call this a delusion, but I don't know - it sure seemed like they were itching to watch me collapse and decompose right there in front of them, and how many times should a person have to cry help?
Some of them even had smirks on their faces while doing it.
We're living in a dangerous world right now. Doctors come out of medical school, all proud that they have completed the grueling training, hardwired to fix people and make some money doing so, but essentially they've been brainwashed.
Brainwashed to believe everything they were taught in medical school was carved into stone as trustworthy and true.
I read an article once, written by a doctor, which claimed that only like 20 percent (it may have even been been 10) of what they learn in medical school is true 10 years later. Sorry, but that isn't statistically very comforting.
I could respect the medical establishment if they would, first, stop claiming that everything in the books right now is true and complete, and humble themselves to admit, they don't know anything for sure - even what they think they know to be true.
And secondly, if they would allow input from people like me, who could, in spite of my lack of a degree, teach them a few things about how my Lyme symptoms seem to increase whenever, for example, I go to visit my sister who happens to have a cell phone mast sitting in her backyard.
I don't think it's right that 'only' doctors and 'only' researchers are allowed to find causes and cures for diseases. I have a brain, too - and it's pretty amazing that the only part of my brain that hasn't suffered injury is the part that knows that EMFs/RFs - some combination of them - are responsible for my chronic Lyme.
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