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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Why do you have two different sets of results??
You have a weak positive on this band....
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
quote:Originally posted by nybasketball212: lucky you, as negative as can be- probably no lyme
I wouldn't say lucky. After all I still have all the symptoms and have tested negative for everything else. Lupus, RA, MS, Parkinsons, HIV, etc
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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quote:Originally posted by Lymetoo: Why do you have two different sets of results??
The first is the IgM and on the next page I have IgG
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by nybasketball212: lucky you, as negative as can be- probably no lyme
Why do you say that? Band 39 is specific for Lyme.
Not saying he has it, but it sure doesn't look as negative as can be to me.
And it's a clinical diagnosis anyway since these tests are so unreliable.
I just ask, because 5 years ago I had a Lyme test and the doc told me it was "as negative as can be", but it was a false negative. I had it all along.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I should mention that I'm a 30 year old male and suspect that I may have got lyme 10 years ago. No rash. approx 40 tick bites over the years.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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posted
the more I read and the more I learn the less things make sence. The numbers by themselves are just that to me, numbers. When I read the report though it makes me go humm..
quote:Originally posted by terri540: the more I read and the more I learn the less things make sence. The numbers by themselves are just that to me, numbers. When I read the report though it makes me go humm..
- If you have a (-) next to the band .. then it is negative. Doesn't matter if it's starred or not. The stars are the Lyme specific bands ..but you must have a (+) next to them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Have you been on abx yet?
I would do abx challenge and repeat the western blot at some point. You may convert to a more pronounced positive eventually.
Even my Lap Corp blot went positive after pulsing abx for a while.
If you have the symptoms, you may just want to start treating and see where it takes you.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Thanks all. Now I just have to convince my current doc for continued testing or find someone who will.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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posted
A little update here.. Have been to one of the top Lyme clinics in the country. Symptoms continue to progress with no for certain diagnosis. Even so they have been treating me with a variety of antibotics and supplements. In recent months my skin has become more involved. (It's loosing elesticity in places) Doctors completely dismissed the skin issue which is frustrating. The Lyme clinic experience in general is frustrating because I still don't know if I'm headed down the right treatment path. All the while I'm shelling out money to them and the drug and vitamin companies. I've been given a prescription for Mepron which is outrageously expensive. Seriously starting to wonder if I should jump ship with Lyme treatment and find someone who will treat me for scleroderma. Such a frustrating experience.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I hope you'll keep treating. I lost my Dad to complications of scleroderma, and it was only in hindsight, after my own diagnosis, that I recognized his many years of declining health as typical of Lyme disease.
It's a group that advocates treating autoimmune conditions with antibiotics. Many have scleroderma diagnoses. Many eventually get diagnosed with Lyme.
Standard of care for scleroderma is oral steroids. You will have little chance of recovering from possible stealth infections if you choose steroids, so think carefully.
My Dad's best years were the ones when he was on Minocycline. I suggested it after reading a book by the founder of Road Back.
But as the CREST symptoms worsened, he could no longer tolerate the med. It was his choice to discontinue.
I'm painting a grim picture here, I know.
After reading your labs, symptoms, diagnosis, progression, I do think you have Lyme and co-infections.
It can take a long time to see progress, but your symptoms should change with treatment. Most of us get worse (herx) before we get better. Many notice some symptoms improving as others worsen. But there should be some response to antibiotics.
I would suggest that if you've had no response, you haven't been on the right combo for your most prevalent infection.
Based on his symptoms, I do believe my Dad had Babesia, so I suggest that you continue the Mepron. Are you paying out of pocket? Malarone, a similar drug that also treats Babs, should be available as a generic very soon. Check with your pharmacy.
Also, do not rule out the European Lyme strain, which causes skin complications. Google acrodermatitis for some pictures. That strain is in the U.S.
Why so long between posts? Lymenet is the fastest and least painful way to get a complete education in Lyme disease.
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Terri:
I'm pretty sure my daughers LLMD would consider your WB test results to indicate exposure to the lyme bacteria.
23 - 25 and 39 are specific to Lyme. While your results are only indeterminate they are not negative.
30 - many postulate this is part of opsyA (band 31) but I could not find the cross reacts (my daugher has had 30 + in her Igenex tests).
41 - cross reacts with a few other spirochete bacteria (syphilis, weils), not the peridontal.
It was based on symptoms and a positive 30 and 41 that we were convinced our daugher had Lyme. She has never tested positive via Igenex or CDC either.
Yes Mepron is not 870 / bottle. Means your MD considers babesia (my daugher tested negative but had the classic symptoms, took over 10 months of mepron / zith to resolve the babs symptoms).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
my first tests from Ignex were negative. I restested a few months later and they were positive. I have been treating this disease for a long time.
Posts: 323 | From Michigan | Registered: Sep 2006
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quote:Originally posted by BoxerMom: I hope you'll keep treating. I lost my Dad to complications of scleroderma, and it was only in hindsight, after my own diagnosis, that I recognized his many years of declining health as typical of Lyme disease.
It's a group that advocates treating autoimmune conditions with antibiotics. Many have scleroderma diagnoses. Many eventually get diagnosed with Lyme.
Standard of care for scleroderma is oral steroids. You will have little chance of recovering from possible stealth infections if you choose steroids, so think carefully.
Based on his symptoms, I do believe my Dad had Babesia, so I suggest that you continue the Mepron. Are you paying out of pocket? Malarone, a similar drug that also treats Babs, should be available as a generic very soon. Check with your pharmacy.
Why so long between posts? Lymenet is the fastest and least painful way to get a complete education in Lyme disease.
I haven't had anything work posting about and have been busy trying to do what I still can. Have read a lot but it's still hard for me to understand things.. Lately, all I can think about is that if this an autoimmune disease then why can I not get treatment for autoimmunity? I guess if there was some quick Lyme treatment I wouldn't be concerned. After years of treating it may be too late to make a change in treatment. Also not knowing for sure that antibiotics are not making things worse. Those things weigh heavy on my mind especially with things slowly worsening. I don't feel like I have time to waste on a "maybe" treatment plan. I think the hard reality is that the medical community doesn't know what the cause or treatment for these disorders/diseases is. Given the high price tag on all of the recommended meds I wonder if there really is no such thing as Lyme. What if it's just a new form of autoimmune disease, and the doctors and drug companies have teamed up to make money on false hope miracle treatments. I know that sounds crazy but I can't help but wonder.
I have insurance but it's virtually worthless. The Mepron isn't covered and Malorone is, but only if I have malaria. Got the Malorone filled today, all out of pocket.
When I asked my Lyme doctors about "fibromyalgia" they said it could be. When I asked about additional Lyme testing they told me there was no point in additional testing. When I try to get specifics about Lyme from them they say things like.. "well, what we call lyme" "What we mean when we say Lyme" etc. Hinting that it could be something other than a tickborne illness but they don't want to talk about it. When they looked in my mouth they counted and then noted in the chart how many amalgam fillings I had.
Speaking of amalgam.. Had all of my mercury removed recently. Just another pile of money blown away on this disease in hopes of better days.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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Have continued on treating with anti-malaria and antibiotic drugs. Things continue to worsen however. Skin is becoming more and more "doughy" or loose in various places. Veins more distended. Swelling and stiffness in more and more joints. More swelling in left rib cage and upper left abdominal area. (rib cage started swelling 1.5 yrs ago) At this point I don't know what to do. I have read everyone's posts and I'm really on the fence about things. Don't know if I should make a trip back to the Lyme doc or not. FWIW the doc I've been going to is one of the top in the US. If things were getting better I might not feel like jumping ship but with things getting worse I don't know what choice I have.
The increased abdominal swelling is of great concern.
I saw a report on the news a few weeks ago where some study or research was done that indicated that CFS might really be an autoimmune disease. I took a trip up to the Fibro and Fatigue Clinic whic is now under a new name. They didn't seem to be aware of such a study. their treatment plan is much like the treatment for Lyme. I thought it was worth a trip to hear what they had to say at least.
I know I need to go get another opinion from someone. If I go back to the Lyme doc they are just going to tap on my belly and push more antibiotics.
I've wondered if this could simply be the result of a chronic ingrown nail. I've had one on and off for a long time. Perhaps that has caused some type of bizare infection. Maybe it's leaky gut. Maybe Castlemans, or human heartworms. Or????
Things just shouldn't get worse and worse in my mind. I don't know if I need to find a new Rheumy or Infectious dis. guru or possibly a GI doc.
Have heard about some new direct test for Lyme.. Sounds interesting.
Worsening symptoms with continued treatment is just too hard for me to accept. Things have to start getting better for me to continue fighting this thing. It would be so easy to just give up and quit my job and take it easy for as long as I could.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You are an ideal candidate for the new direct culture test. So, really consider doing this. Will have to be off meds for at least 4 weeks and symptomatic. Special directions on when to collect sample. Have to have the test kit sent to a doctor. It is expensive.
Before you give up on a lyme diagnosis, do this one last thing.
One more thing, most of us have coinfections. Did you have any testing for them? Babesia? Anaplasma/ehrlichia? Bartonella? Those tests do not catch everyone, but if you have babesia, for instance, then you were tick bitten, and could have lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
They told me there was no point in doing tests for coinfections as there were too many to test for. My Igenex has a test for B burgdorferi.
Recent symptoms are increased spider veins. They have now started appearing on my face. And the skin near the back edge of several finger nails is red and slightly swollen.
I'm near the end of a treatment cycle so I should be back in touch with the docs soon to see where to go from here.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I understood that 41 is lyme. Sounds like you have bart too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
See if your LLMD can recommend or refer you to a new rheumatologist and GI doc.
It sounds like you are very unsure of your diagnosis and you want to seek further evaluation and possibly treatment for your worsening symptoms.
Our LLMDs are wonderful but they cannot specialize in everything. They should be able to refer you to physician(s) that they trust to help treat you.
Just don't give up. Continue your treatments, they take time. You may have more than one chronic conditions (we hope not but it's a possibility). Lyme may be only one part of the picture.
Posts: 5237 | From here | Registered: Nov 2007
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And isn't there a european strain of lyme that causes skin problem...it has an acronym. I don't remember the name.
Lots of doctors don't test for co infections- they treat based on symptoms. However, although the tests aren't ACCURATE, and there are many strains of co infections, I don't know that there are SO MANY there is no point in testing
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
Obviously you are having significant medical problems and need a team of doctors helping you. Your Lyme tests are not at all significant so I would not suspect that as being an issue for you.
Keep looking, keep asking....good luck.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I wish I knew how to find a PCP that would be willing to help. Everyone local or not so local has given up on me. They simply look at the relatively normal labs and tell me not to worry.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I give up. It's been a long hard road, but I've decided that there is no point in trying to treat this disease. The doctors don't care for the most part and those that do don't want to admit that this disease has no diagnosis or cure/treatment. After looking at everything from the beginning of my health problems, I've determined that the real culprit is most likely the long term effects of IBS-PI. Some bad "bug" of sorts altered my digestive system and I feel the disease will be terminal. I've decided to try enjoying what is left of my life and stop throwing away money on treatments and doctors. I suggest that others do the same. There is no point in donating millions of dollars to those who have no interest in curing the sick. Cheers
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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quote:Originally posted by lax mom: Post-Infectious IBS.
- A diagnosis by another cop-out doctor.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You have lyme and company. Don't give up. Find a better lyme literate practitioner, one who is ILADS trained. They are cutting edge. No one else even comes close to getting it.
Lyme is correctly diagnosed clinically, not by a blood test. And your test by the way, says lyme to me (I'm no doc, just lyme literate).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by Lymetoo: A diagnosis by another cop-out doctor.
Yep. Take the "I" out of the name, Post-Infectious IBS, and that's the real dx they gave out.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sorry Terri, I just went back and read this whole thread (see you've been to a top doc already).
It sounds like you are chasing a western medicine diagnosis. Unfortunately, there aren't any easy answers for lyme and company. I've met people who want blood tests confirmed and want to hear a specific diagnosis for whatever reason. Lyme just isn't that simple. We are all different and when you add in the co infections, treatment can become even more complicated.
For some people there is also a genetic component to lyme treatment that most docs haven't figured out the answers to yet. Neither have the allopathic docs, to say the least. At least the lyme docs are ahead of the pack with lyme.
Every single lyme patient is different, so they have to keep trying something new as well as look for patterns in your treatment/history. It can be helpful to keep a journal detailing everything you eat, and take as well as how you feel throughout your day on a regular basis. I go back and look at a years worth of notes and can see what was going on. But at the time I simply couldn't see it.
Also, parasites are a huge player in lyme, IMO. Also heavy metals. And protomyxzoa is another big one that people miss. I think a lot of people have this bug.
Sorry but, you have lyme and company, so keep pushing forward. Keep trying new things to treat.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I'd be interested to know who this "top doc" is. Sometimes a "top doc" is not the real deal.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terri,
It's logical to give up on doctors who are not educated about lyme, other tick-borne & other chronic stealth infections - that very often CAUSE IBS.
Can you afford to see a real lyme literate doctor? Either a LLMD or LL ND (naturopathic doctor) who is ILADS-educated - for a full assessment and recommendations?
If not, there are still things you can do for yourself. Plenty of things. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Lymetoo, sent you a message. I had to back off of antibiotic treatment several months ago due to food intolerance issues. I started having bad reactions to common foods such as apples and veggies. Given the fact that I had already cut out a lot of other "bad" foods I didn't see that I had much choice. I need a lot of food to maintain my weight so cutting more foods out just wasn't feasible. Lyme docs recommended pressing on but I just couldn't do it. I've tried to get doctors to try arsenic treatments, cancer and autoimmune drugs, but none are willing to try what I want to try. I tried to talk my pcp into trying a food elimination diet, but they were not anywhere near open minded about doing such. By elimination diet I mean no food taken orally for a period of time. Only nutrients and fluids supplied via IV. In my mind I feel this would be a great way to rule out a digestive issue or bio crop allergy, etc. Thanks everyone for the encouragement.
Posts: 22 | From Vidalia, Georgia | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- terri,
As many here have various issues with vision, your posts will be seen by more if you could edit in some white space as "breathing room for the eyes and the thought process" - many of us simply can't read solid blocks of text at all.
Just click onto the tiny pencil and paper icon and put your cursor at logical places every 5-6 lines in the edit mode - and hit the space bar TWICE.
This will create paragraphs that will post about 3-4 lines and be better able for more to read and reply. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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