Topic: How many have treated a year or more, no improvement, still believe they have LD?
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am having a hard time right now dealing with no firm diagnosis. I treated one year for LD with no improvement. Now my LLMD thinks I possibly have an autoimmune issue going on, but hasn't ruled out LD yet.
I need proof, but all I have is band 41. To some, band 41 is significant and in the beginning it was for my LLMD too. Some say it isn't significant. So what does it mean?
I just wonder how many have treated a year or more with no improvement; and do you ever wonder if you are barking up the wrong tree.
It's so frustrating to treat based on trial and error, which seems to be the way it is for most of us. And then so many don't see improvements. Does it make you question your diagnosis?
I questioned my Lyme diagnosis and then I became convinced it was Lyme. Now I am facing the possibility of an autoimmune disorder, but have no proof of it either.
Is it possible that I do have Lyme and treatment just isn't going to work for me? Am I the only one that questions their diagnosis?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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adamm
Unregistered
posted
Beeen in txment for 15 months, covered bart, babs, and Lyme, and have done nothing but go downhill. This disease is taking an inconcievable toll, and IV's seem like my last, best hope.
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feelfit
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Member # 12770
posted
Me. I am going on 19 months of treatment. I experienced a resolution of joint symptoms in my first three weeks of treatment(iv).
Since then, only different shades of the same.
I know that I have *something* in this arena. Western Blots are very positve.
I do think that it may be much more complex than we are aware of. I think that when the protozoa questions are answered and addressed, we may be better equipped to wipe this stuff out.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
My daughter has been in treatment for 16 months with no real improvement. There has been improvement in the beginning of certain abx but then it declines.
I saw a bullseye rash on her that didn't get treated for almost 4 years. It was after that that she started having problems.
I am convinced she has Lyme. It is getting harder to be optimistic about her recovery.
I do sometimes wonder if we should do more conventional treatment and just treat the symptoms. Unfortunately, we have already tried that with no success. So we are left with no other options even if we wanted to try something different.
Posts: 984 | From US | Registered: Dec 2007
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Leelee
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Member # 19112
posted
I have been following the parasite thread and some people say that their turning point came when they addressed parasites.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I have been treating over a year - including co-infections - and am worse than when I started tx.
I have recently questioned my Lyme diagnosis, but am not giving up on Lyme just yet.
I know that the LLMD has been negligent with my treatment, so I can't rule out Lyme until I give it a good shot with my new LLMD.
The new LLMD is supposedly "the best" so if he can't get me better then I'll have no problem tossing out my Lyme diagnosis. Though I would continue to look for unidentified infectious pathogens, including getting my blood under Dr. F's microscope!
Posts: 29 | From USA | Registered: Feb 2009
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posted
I have been in treatment for 2 years. I had some good improvement on IV Rocephin/Rifampin/Malarone/Plaq but when I went off 6 months later I relapsed totally.
I am definately questioning my diagnosis as I only had 41+++ and some IND. For me I don't believe 41 means anything in the diagnosis of Lyme. For those of us who only have a 41 on our tests will question the diagnosis because for me anyway I like to have proof positive and I know with Lyme that is not always possible.
I am not trying to say you all don't have Lyme with just 41 but I am just not sure that I do. My LLMD in NY says it means nothing and he only goes on clinical symptoms and response to abx.
I am currently not treating and continuing to look for other answers. I feel worse now than I did 3 years ago so something is wrong but considering what I have been on for treatment I don't think it is Lyme...I have also treated co-infections as well.
I have also been told that what I have was infectious in nature but they can't point to what that "infection" was.
Maybe I will end up treating again or just take a long break. I will continue to look for other reasons cause I can't lose 5 more years of my life...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Is everyone posting here addressing heavy metals?? I didnt' improve at all either until I addressed mercury poisoning and had my amalgams removed. Gigi who used to post here and knew Dr. K well always stressed the point that improvement may be near impossible if you don't address heavy metals. They make the bacteria resistant to our immune system and antibiotics so you can do all the lyme treatment you want and nothing will happen. It would make sense to get worse in cases too because of killing off all the good bacteria in your gut and making our immune systems even weaker.
Just make sure metals are checked for.
Posts: 499 | From Indiana | Registered: Oct 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Yale has patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate.
In this link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease.
He also states that you can tell the difference between these illnesses by a clinical diagnoses. All the lyme patients have band 41 but few people produce many other bands
posted
This patent is something that needs to be shown to every physician on earth. It is THE smoking gun.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The date on this patent is like 1997. What is the deal with that? If it has been patented, and it is a worthy test, why is it not being used? Is it not FDA approved?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My sister actually saw Dr. Steere when she had her Lyme WB come out with only 41+. He told her that she did not have Lyme and to pursue other causes for her symptoms. She went to him because she was having arthritic symptoms in her hands.
She then went to Dr. D and he said basically the same thing but gave her 3 months worth anyway just to see if she had a response.
Posts: 343 | From North Carolina | Registered: Oct 2008
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I treated for one year where i herxed the whole time. No improvement.. just felt worse.
Year 2 .. began to have a few windows of feeling better. Took two full years to turn the corner.
Treated for another 2 .. total 4 yrs. I've now been off meds for 4 1/2 yrs.
It can happen for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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losferwrds
Unregistered
posted
My cousins wife is treated by a LLMD, she has severe RA, She was treated for lyme and bart for like 2 months and then dr then said it was an autoimmune issue and put her on Embrel, and dr was former president of ILADS and still on the board, so who really knows. The testing needs to get better IMO. I have met more Lyme people in my life than AIDs patients yet, AIDs gets a ton research and funding. I guess you have to get something that kills you in a year to get any attention by the CDC. I bet a there has been more money spent by the government on this Swine flu thing in the last month, then for Lyme in the last 3 years.
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The number of people exposed is in the millions. The reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what Steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control,
but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection.
Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
This statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots.
It allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Why? It's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution.
It's likely a bioweapon. North American disease is different from European disease...lack of CSF antibodies, for instance.
A much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. The CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
Lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. If late disease was rare, we'd be able to get treatment.
Unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
Think about this...Allen Steere wouldn't listen to Polly Murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call Fallon. Now, Fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated.
Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. It's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
written by Aligondo Bruce from Lymenet
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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