livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Now tell me what you think? Dr. L.. of FSU.. says that he is from NY and understands the issues concerning my not wanting to take my children off the ABX ... but encouraged me to give it a try and if they return to the symptomology that he will continue the ABX once again without hesitation... he also is willing to run a test now to see where the results fall. understanding that the tests are not really reliable.. and then again if we take James ( my 16 Yo) off of it will run another one a month later to see if it changes the results..
I explained also that the doctor that was seeing them was running tests every week and while most tests never shows a band .. some would show one to two or more.. and that their was one patient who had all symptoms but never had a positive test yet after 6 months of treatment she had a full IGG and IGM test for Lyme.. which concludes in my opinion the tests are not reliable.. He asked my son if he would allow them to run a test and he stood up to him and said why if they are not reliable would you even bother..( go James!)
He is not as concerned about James as he is with Eugene who was found to have first degree heart block and is curious to see if the Heart block was reversed by treatment and asked if He also would consider stepping back from ABX ... My son said provided you can assure me that I will not end up like my father... they were both willing to work with the man. and the man assured them that if the symptoms were to return or if Eugene's Heart block resurfaced that he would put them back on the ABX..
He is willing to work with us and we are willing to work with him.. I also explained that my deepest concern is that I had been on ABX for 3 years and in as short as 3 months I am almost as bad as I was before starting,, he asked me in what senses.. I named what I could think of and told him my mind is the worse part of it..I am loosing much of my cognitive ability... Is this a start? are the doors open? or will I be in for trouble here?
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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dmc
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Member # 5102
posted
I don't know what to say...just wanted to up this, so it doesn't get lost on the next page.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I don't know... most ID ducks talk a good talk, but have trouble walking.
The tests will very often show positive after beginning abx, even if they showed negative before treatment. That is pretty common.
Give it a run and see what happens.
You might get more responses if you put some space between every sentence or two. It's very difficult for most Lymies to read large blocks of print. Thanks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
I think you just have to go with your intuition here unless you can find other patients of this doctor to talk to. Have you checked to see if there are any support groups in your area? If so, maybe someone there has experience with this doctor.
Would suggest your sons keep some sort of symptom diary and take this to next appt. That should help you determine if they are feeling worse off of antibiotics. Be sure the doctor gets a copy to put in their medical chart. Documentation always helps if the doctor is on your side.
WV Hillbilly
Posts: 48 | From Five Mile Creek, WV,USA | Registered: Aug 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
WV, my problem is $$$ I am ready to loose my home I stocked up on ABX from dropping my treatment early so that I could continue my chidlrens ABX until I got my back fixed and then I could land a job as a paralegal.... I failed on this since no one will touch my herniated discs and I am relapsing horribly on the Lyme side.. so my plans are shot!
I have also been reduced to 1/3 of our income due to SSA office not having us fill out a required form to continue collecting.. I am ina big mess and have to deal with this situation the best I can..The ID doc seemed compassioante and understanding of my concern to continue treating ans was willing to..
I almost said "but you have to..." but I figured it will come to surface again when the kids relapse and I will insist then that he do something! my eldest he will keep on untilI say otherwise due to the ADHD with heart issues, but the bipolar diabetes thyroid and ADHD on my youngest I think he felt we can chance trying off the ABX.. I guess time will resolve the questions and I myself will not allow them to risk my chidlrens health if I see any set backs I will hit him with the further research..I figure if I am willing to bend then they will be willing to bend backwards when it fails to try it their way.. and if not maybe by then I will be in a better position to heave ho! Maybe I have too much faith.. he is from NY, and appeared sympathetic to the pathology and presentation... ok lets see if he is a duck..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Livin:
I think you should give this MD a chance. I am surprised that your previous MD was testing so often. Was he/she Lyme Literate? Most LLMDs will treat based on clinical diagnosis.
That said, an IDMD can and will treat based solely on clinical diagnosis. The upside to seeing an IDMD is that insurance cannot deny you coverage (depending on the State you are being treated in).
I see an IDMD who happens to be an LLMD. I would not have gotten the treatment I needed had I seen a local LLMD, not ID. Do not base your decision on the generalizations of some who say all IDMDs are ducks. That is simply untrue. Some LLMDs are ducks, as are some IDMDs. If this guy isn't quacking and you feel ok about him then give it a shot, especially since $$$ is of concern.
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
BC, TY for your support.. The ID did not quack a matter of fact I was most likely the one doing most of the talking ..... he listened rather well, unusal for were I come from. most often the Md's there would be put off by a person coming in with papers and statistics. This was all copied and then he listened to my concerns and then listened to the kids concerns. It took a while and I felt releived that I did not have to strike out the Lyme literature!! I had a soft breif case full of it!! He was compassionate and did not challenge my words.
The LLMD up north was making a documentation for the health department on how unreliable the tests were, how the bands show up in one test then another one shows up in another test or none show up but the person still has symptoms... then a couple will show up and then a few strange cases where they are negative when they begin the treatment and then 6 months in they come out full igg or IGm positive! ( which I further explained to this new ID)
I think the LLMD's purpose for this was at least being heard at the time I left.
The lab was Quest which I really think they have issues and don't know what they are doing since many times they ran the ELISA and I would have to call and complain that the test that was orderd was the WESTERN BLOT! nice way to suck up more money for doing something wrong..plus I was the only one in the family that pulled any bands .. both boys always had none... but still hold symptoms even though they are mild...
I know I am still sick ,, and growing tired of all the pills and tests and just plain tired... My kids have a whole future ahead of them and they don't want to take the pills anymore either they are also tired of being sick at such a young age..
how do you tell a child that in order to be well they will most likely have to take these pills the rest of their lives? This is such a sad state of affairs....
LindaD
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
What abx's are the children on? what is the dosage? How long on each? What supplements are being used?
Continued testing seems crazy to me if adx was already made. Sounds as if he is doing research.Have you been informed of research?
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Troup, yes the testing was to prove to the local health department that the tests were not reliable.. I thought I made that clear ..sorry
All of us have been on Doxcy (lol OOPS) 100 mg BID for the past 18 months...on other meds for other symptoms... and no suppliments aside from acidophilus each meal..
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
LL:
You were pretty clear, as far as I could tell, about the testing.
100mg BID of what? I may have missed what meds you and the boys are on. We are not MDs. But, it is sometimes ok to compare what others are doing as protocol. I am a lightweight with meds so, 100mg BID of anything is usually enough to cause me trouble. If you feel like it, share what the treatment has been so far. Some of us are veterans and have been on lots of different stuff and might be able to offer support.
As for the kids being on abx for the rest of their lives, I don't think so. You have to think positively about this. Even ADHD meds may not be necessary for life. Little bodies change and grow. Things are not set in stone. Look to the future as a brighter place and maybe a med free or reduced med place. That is a goal of many of us. There are alternatives to meds. Try to get to that place.
posted
100 doxy a day or twice a day for you? If kids are small, 100 may be OK. Ask your doctor about using a mepron to kill cystic form as well as any co infection. If some of the other posters are correct, magnesium could help.
Sorry I missed the "prove to health dept" part.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I am with Lymetoo on this one also. Frequent Contributor Member # 743
posted 26 September, 2005 10:19 PM -------------------------------------------------------------------------------- I don't know... most ID ducks talk a good talk, but have trouble walking.
The tests will very often show positive after beginning abx, even if they showed negative before treatment. That is pretty common.
Give it a run and see what happens.
Good luck tree
I would add b complex vitamin,and magnesium,cq10,everyday and maybe glucosamine every other day.And a (asprin) if okay with Dr every other day too.
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they were both willing to work with the man. and the man assured them that if the symptoms were to return or if Eugene's Heart block resurfaced that he would put them back on the ABX.. 
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