posted
Hi everyone..I was just wondering if-provided one treats long enough and with the "right" combo of meds-if ANY symptom from lyme or coinfections can diminish. I do not expect my worst symptoms to disappear...I have been too sick for too long I think.
But a reduction in symptoms would be wonderful. Is this an honest possibility, or do I need to prepare for the fact that I might be this sick forever? I just want to set realistic goals and expectations for myself, esp with marriage in the future. Thanks in advance for any responses. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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I think it is counter-productive to buy into the mindset that treatment will not work and you will never get better. There is no point in believing that!
If something is not working, it does not mean that you cannot get better. PERIOD.
If you are stuck in limbo with your treatment after a sustained trial, it's probably time to try something else.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
Reportback from support groups here - I have seen many a patient on their last legs, then a treatment works for them and they're much more functional again, and looking better, too.
I don't think you need to be asking the question you're asking - better to be looking at your treatment options.
I think as of now, you're on your special feeding protocol? If that's the right one for you at this time, then you're doing what you need to be doing.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
VW-sorry for asking the question. I think its cuz I am seeing my LLMD tmrw and he has a tendency to get a little pessimistic at times and I just wanted to get the perspective of others on here.
Its hard when you hear your dr tell you that your chances of recovery are "lower than others" and this kind of stuff. Thanks trimom. I am def trying to stay positive. I pride myself on trying to be both as realistic and at the same time as positive as possible.
Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
If you have a pessimistic doctor it might be time to look for a new one.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Yeah its a hard call Ellen...he is devoted to my case like no one else has been and he genuinely cares about me, but he is as frustrated/puzzled/disheartened by my lack of progress as I am.
I don't know what to do..all I know is I have to see him tmrw and I will hear guaranteed at least once-"I do not know if you will get better, you are my sickest patient but you are strong." Its just like aargggg....Thanks. Jess
Posts: 870 | From ct | Registered: Nov 2012
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You havent even started treating co-infections.. How could he and you possibly think you will get significantly better without addressing those things. Hes a bit premature with his comments or is it possible you misunderstood.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
He may be devoted, but if he is puzzled by your case and questions if you will improve then I would think it may be time to get another opinion. There are some gravely Ill lyme patients out there and if you are the sickest patient your LLMD has seen perhaps you need to be seeing someone who has treated some of the more serious cases.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen, thanks I think you make a good point.
Lululy, I def didn't misunderstand. He tells me all the time that he doesnt know if I can get better, that it is his "hunch" that I will not but that he will "keep trying anyway in the off chance that I am wrong". Its just hard to hear, but at the same time I appreciate that he is honest with me and doesn't sugarcoat things.
But I leave every visit with him feeling defeated a bit. Jess.
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
When my daughter was treating we did our own research and made suggestions to our doctor on our next course of treatment. Luckily he followed along and we got the treatment we needed. Its always important to stay proactive especially if you choose to stay with this doctor. Where we live LLMDs were very hard to find and the one we found was minimally trained in treating lyme patients.
posted
I think striking a good balance is important and it is one that I see from your posts that you are doing pretty well...
The balance is continuing to live life to the fullest given the limitations as well as moving forward in treatment to pursue good health.
I think it is important for a doctor to be confident in his treatment plan. Maybe he is trying to communicate indirectly to you that he does not believe he has the expertise to treat you.
That way it will be your decision to move forward with another doctor rather than him "giving up" on you. Just a thought....
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
Thanks soccermama...your post definitely gives me something to ponder. I appreciate it. Jess.
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Uh, I'm on my third LLMD. The others helped me somewhat, but my third one treated more aggressively (attended all the ILADS conferences, too). What probably helped is that he is a lyme survivor himself. He has a strong desire to KNOW.
Treat all the coinfections and see how you do.
BTW, I was on 2 years medical disability. Returned to work 4 more years, and then retired. It's been a roller coaster ride. My dream is to get well enough to travel to Europe without a relapse.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I believe there is no such thing as "incureable" illness. The human body has innate wisdom and it knows what "healthy" is...the trick is to figure out how to get the body restored to that healthy status.
I believe there is an answer out there for everyone, no matter how sick, for how long. I have to believe this, or my own situation would be completely hopeless...which I know for a fact it is not, given the improvements I have seen while on treatment.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Dear jessicabooklover, I think it's more than okay to ask this question; it's a normal response to this horrible illness. It's frustrating, frightening and often discouraging. It's okay to have those feelings and certainly okay to question.
HOWEVER...then you must pull up your boot straps and keep searching, doing your best to be hopeful. As soccermama said, your posts appear that you're balanced. Sometimes, we just have to vent, question, and feel discouraged. I think that's perfectly normal, IMO. Good luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Thanks TS....yes I def try to keep a positive attitude, but it can certainly be a challenge at times. I think its because I am the "perfect patient" and do everything that the dr asks and so when I do not improve I get so discouraged.
But yes, I never give up. I do not believe in ever giving up fighting with all you have for all the happiness and health that you can possibly attain. Thanks again. Jess
Posts: 870 | From ct | Registered: Nov 2012
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lymeboy
Unregistered
posted
Treat coinfections. If you have a doc, and he's puzzled, and he doesn't know what's wrong with you, and he hasn't treated coinfections, he will never get you well. Treat everything. Get a new doc who will without question. You may like your doc but based on what I am hearing there's no way this guy can help you. This disease is hard enough with a competent doc.
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