Confusion about chronic lyme

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alfers
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Date Joined May 2005
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   Posted 11/18/2008 11:50 AM (GMT -6)   
Hi everyone,
I saw a new doc yesterday, a rheumatologist who is a friend of the family. She's very nice, thoughtful, intelligent, but now I'm confused a bit. I thought most people (including ID doctors) did believe that chronic lyme exists, but they disagreed on whether or not to treat it with antibiotics (because of the strong possibility of it coming back, even after lengthy antibiotic treatments). Well, this doctor says she has read a lot, studied the controversy, talked to a lot of her colleagues about it, etc., and has come to the conclusion that chronic lyme does not exist -- that our immune systems kill the bacteria, straight and simple. She said people can continue to test positive on the IgM test even without having the bacteria. Then she said she thinks I might have something else going on, and that the antibiotics could be making me feel better because they sometimes work on things other than bacteria.
So...I know this sounds like the typical line we hear from a lot of docs, but I wasn't aware that many docs (including some smart ones!) really think that chronic lyme doesn't EXIST. Maybe I knew it once, but I had forgotten... And now I'm confused again about what to do, because I do think this woman is very intelligent...so how could she be completely wrong??
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 11/18/2008 7:06 PM (GMT -6)   
I am confused also. Why would she say that "people can test positive even without the bacteria." How does that make any sense when the bacteria IS the Lyme?? The whole disease to me is a puzzle and the more I learn the more confused I get! D

baileygirl76
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Date Joined Sep 2008
Total Posts : 123
   Posted 11/18/2008 7:25 PM (GMT -6)   
My doctor told me that chronic Lyme is the damage that has been done to the body from the initial infection (she also said that the infection would be gone). It is all so confusing! My doc also said that I could test positive forever and that the infection could be gone... what up with that?

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/18/2008 8:14 PM (GMT -6)   
Hi alfers,

I read your posting some hours ago, it kept my brain busy the whole afternoon; thanks for sharing the information!

I made a similar experience with a friend of my family; he is a specialist for internal medicine in a hospital here.
I think nevertheless quite a lot of people (and docs) believe that chronic lyme exists and that disagreement refers to the degree of successful treatment with antibiotics in the chronic state.

Here, where I live the controversial scientific discourse going on about the chronic state of lyme and the dangerousness of this disease in general
is very very highly related to questions of "who pays for what": which treatment / medicine will be taken over by the insurance, what about sickness benefits or if it comes really bad when one might have earlier pension entitlements due to this illness;

I have the feeling, that we are going to get lost in this bureaucratic tug of war........ that scares me the most!!!!

The spirochaetes seem to be very tricky according to what I have read so far, they are able to outsmart our immune system so that they get not attacked by it, if I understood that right;

I think lyme is a real challence for further research and I have the feeling that there is a lot more to understand about Lyme. To think this way helps me to keep my inner peace and balance.

Take care!
dorit

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/18/2008 8:33 PM (GMT -6)   
Hi baileygirl76,

to what I know / have been told is that the igg in the westernblot can be positive for a very long time independet from a still "active" infection;
the test shows/ identifies specific parts of the antigen the immunesystem has created as response to the spirochaetes;

that means if igg in westernblot is positiv, you know they were inside your body; it is also said here (europe) that if there are still symptoms of illness, the infection may still be "at work".

I don`t know if it is the same with igg in elisa..(but I think so)..... may be alfers knows that and would tell us !?

take care
dorit

nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 11/18/2008 9:26 PM (GMT -6)   

I can't tell you where I read this but it proves to me that Bb bacteria remain dormant in the body and reactivate.  An experiment was done infecting mice with Bb.  Then they were "cured" with ABX; they no longer tested positive for disease.  The mice were killed and it was found that the bacteria were alive and well in the collegen.  As testing is done on the blood, the tests came back negative.

People presume things and find others that agree with their assumptions.


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/18/2008 9:43 PM (GMT -6)   
hi nefferdun,

so this is true..! I have heard about the mice experiment too but was not successful in finding it. Do you remember if you found it in the web or in a magazine? a scientific journal? do you remember when that was? I assume, it was in English?!

dorit

Lymebean
Regular Member


Date Joined Nov 2007
Total Posts : 267
   Posted 11/18/2008 10:28 PM (GMT -6)   
I haven't posted for a while because I just don't know what to think right now. I have struggled and almost died from this disease. However, as of right now and I am still on antibiotics, for the past month I have made drastic improvements! I have stopped sweating for the most part, my muscles don't ache and hurt or twitch, I am not fatigued and I can think straight. This is after a year of antibiotics. I really do feel normal for the first time in the past 3 weeks over the past 3 years. Incredible. I am on a pulsing regimen for Lyme, Babs, and Bart. 4 days on and 3 days off. I take, Bactrim, Zith, Plaquenil, Artemisinen and Mepron. I also take Trans-factors. I really have started feeling better, thinking clearer, more energy, more myself and I am hopeful. That being said, I am terrified of stopping azntibiotics. However if I do get 3 month's of no symptoms, I will try herbs. I think the difference for me was diagnosis of hemobartonella and treating that with Bactrim. We'll find out if is enough or if I need to go to Fluoroquinoles. Thoughts? Cheers to evertybody! If you can get to how I feel right now, if you were where I was, you have hope!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/18/2008 10:47 PM (GMT -6)   
After 8+ years and one giant herx, I am convinced I have an ongoing disease/infection. I am also becoming convinced that I may be one of those people that need long-term IV abx.... I do not believe that it is my body's immune system "attacking" itself or just remaining in over-drive due to the Lyme infection that is supposedly already "gone".

I KNOW what I was like before this... I know how fantastic I felt for 3-5 days after my one and only herx.... and I know that I still have an ongoing infection. I'm convinced... it is NOT in my head, it's in my body. And I KNOW that when it's gone I'll be back.... or maybe I will be a chronically ill person on open-ended abx's forever.... but I just believe this disease is alive and thriving in my host body and the only thing that has EVER worked is abx's.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 11/19/2008 2:42 AM (GMT -6)   
As a scientist with Lyme disease I am more than confident the chronic Lyme does indeed exist. Many of scietific reports that dispute this claim had some major design flaws. Additionally, several much more precise and well-thought out experiments have shown chonic infection in mice. How come nobody is asking 'where is the evidence that it DOESN'T exist'? or 'where is the evidence of a post-infection disorder'?

As I've said before, MDs can't even diagnose an accute infection (most of the time)....a chronic illness is even more difficult to characterize as the bacteria have evolved mechanisms to evade the immune response (note: many other bacteria and protozoans have similiar survival mechanisms). Assuming the bacteria will respond to antibiotics in infected mammals the same as in cell culture conditions in a laboratory is negligent and stupid.

I recommend reading Cure Unknown. It's written by a well-respected scientific writer that got Lyme disease. She does a nice job digging through the controversy and answering some of the questions you are asking. Take care.

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 11/19/2008 8:25 AM (GMT -6)   
Thanks everyone!
Needshelp, maybe I will read that. I'm so tired of thinking about lyme, but maybe that will help put some of my confusion to rest.
I too heard that the IgG can remain positive because it indicates a past infection. The IgM tests for new antibodies, so why on earth would that remain positive your whole life?? I guess that theory is that your body is continuing to react, even if the bacteria are gone.
Anyway, I do believe in chronic lyme, but this doctor confused me, so I wanted to check in with all of you. I'd love to hear about the mouse test if anyone finds a link.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 11/19/2008 8:31 AM (GMT -6)   

Hi alfers.  I believe that doctors who are not knowledgeable about Lyme disease do not believe that it can be chronic.  Many of them believe that 2-4 weeks of antibiotics will cure it.

While this doctor and every doctor has the right to believe what they wish to believe, it does not mean they are correct.  This doctor may be intelligent, but it does not mean she is intelligent about tick-borne diseases.  I think that if Band 31 is positive on the Western Blot, it can indicate chronic Lyme.  Since the doctors who specialize in treating tick-borne diseases acknowledge that Lyme can be chronic and since so many people have chronic Lyme disease, that is enough proof for me to know it exists.  

If you want to get another opinion on whether or not you are dealing with Lyme disease, I recommend being evaluated by a knowledgeable Lyme doctor.

 

 

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4395
   Posted 11/19/2008 1:51 PM (GMT -6)   
Since Lyme can create and live in biofilm communities, as shown at the end of Under Our Skin, I believe the infection itself can remain active long-term, even after many months of abx. Other biofilm infections require years of treatment.

Just my $.02...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 11/19/2008 7:11 PM (GMT -6)   

If chronic lyme didn't exist, this thread on this website wouldn't exist. 

The Chief


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/19/2008 7:14 PM (GMT -6)   
chief #7 said...

If chronic lyme didn't exist, this thread on this website wouldn't exist. 

The Chief

touché !!!!!!!!!!!!!!!!! rolleyes !!!!!!!!!!!!!!!!!
 

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 11/20/2008 7:51 AM (GMT -6)   
Doctors agree that syphillis becomes chronic, so why do they have such a hard time believing that lyme can become chronic???

There is too much evidence that proves that it is chronic. Like the work that Dr. McDonald does. He has seen many lyme spirochettes in the autopsies he has done.

I am convinced, it exists!!!

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 11/20/2008 8:58 AM (GMT -6)   
Yeah, I agree twingirl. I just don't get how really intelligent doctors can not believe in its existence.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 11/20/2008 10:29 AM (GMT -6)   
I think it's about the money (or a possible "germ warfare" thing that got waaaayyyy out of hand) but probably the money.................
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 12:53 PM (GMT -6)   
I have always has a positive IGM and always a negative IGG. Recently IGX said that herpes (the cold sore kind) can cause a false positive IGM -- but I talked to the director and he said its if you currently have a positive IGM from the herpes.

Also if you have an autoimmune condition you can get a false positive IGM -- or so I read somewhere.

No the antibiotics...my rheumy says that they can make you feel better when you have lupus.


My rheumy says lupus, LLD says lyme and both have reasons why they thing they are right:

Pred helps both, minocycline helps both, on and on.....

tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 11/20/2008 6:56 PM (GMT -6)   
alfers -

the first thing I thought of when I read your post was to have your rheum. friend read "Cure Unknown." I honestly don't know how anyone can dispute that chronic lyme exists after reading that book. I would recommend reading it yourself as well. It is a wonderful book and I felt so vindicated reading it.

Not only does it give numerous individual accounts of those who had it and improved on treatment, but more importantly it goes into great depth about the science supporting it. The book also explains the controversy and helps one understand why most doctors are so ignorant about Lyme disease.

I gave it to my local pediatrician whom I have been trying to "convert" for the past year and told her that if she doesn't believe in it after reading this book, I will not bother her about it again! She is an excellent doctor and is kind of on the fence about it since she is having a hard time believing that mainstream medicine could be wrong. (My kids go to Dr. J in CT for Lyme treatment, but my kids still see this pediatrician for other stuff.)

tickbattler

pjbat
Regular Member


Date Joined Dec 2007
Total Posts : 119
   Posted 11/20/2008 8:33 PM (GMT -6)   
I also think it's about the money (I've never been in my primary doctor's office without at least one drug rep waiting to see her)... but I also think it's about the ego as was brought out in Cure Unknown.
 


hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 11/22/2008 1:21 PM (GMT -6)   
Again, I'd say Lyme doctors usually have one thing in common:

They have Lyme or a family member does. WHAT DOES THAT SAY about DOCTORS?

If this "intelligent" woman had LD, she'd say "IT EXISTS!"

She ain't so smart. In fact, she sounds pathetically stupid. Tell her I said so. Tell her also to Go To ... nevermind!

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4279
   Posted 11/23/2008 10:04 AM (GMT -6)   
alfers said...
Hi everyone,
I saw a new doc yesterday, a rheumatologist who is a friend of the family. She's very nice, thoughtful, intelligent, but now I'm confused a bit. I thought most people (including ID doctors) did believe that chronic lyme exists, but they disagreed on whether or not to treat it with antibiotics (because of the strong possibility of it coming back, even after lengthy antibiotic treatments). Well, this doctor says she has read a lot, studied the controversy, talked to a lot of her colleagues about it, etc., and has come to the conclusion that chronic lyme does not exist -- that our immune systems kill the bacteria, straight and simple. She said people can continue to test positive on the IgM test even without having the bacteria. Then she said she thinks I might have something else going on, and that the antibiotics could be making me feel better because they sometimes work on things other than bacteria.
So...I know this sounds like the typical line we hear from a lot of docs, but I wasn't aware that many docs (including some smart ones!) really think that chronic lyme doesn't EXIST. Maybe I knew it once, but I had forgotten... And now I'm confused again about what to do, because I do think this woman is very intelligent...so how could she be completely wrong??

Hi alfers and everyone else,
 
I think the real question here is what exactly is chronic?   The symptoms are chronic and what causes the majority of the symptoms?   In my opinion, toxins cause the majority of symptoms.  Once the lyme bacteria's are killed, what is left over?  Toxins and more toxins...   
 
I would prefer calling it Chronic Toxic Disease..  Naturally I believe in chronic lyme as it all goes hand in hand for the lyme bacteria's start the illness to begin with.   It's a cycle..  kill the lyme bacteria's but if one doesn't go after the toxins, one is left with unpleasant symptoms that can last for years and years....
 
Those are my thoughts,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking...
 
This song is about my years with chronic lyme and being in remission for over 2 years:
 

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/23/2008 1:58 PM (GMT -6)   
Chronic disease to me means sick every day.

If what you say is true, dejavuu, then all I have left to do is detox.

But the mouse research doesn't support it.

http://www.news.ucdavis.edu/search/news_detail.lasso?id=8584

is a headline that contradicts the study.

I contacted the professor and he gladly emailed it to me. (His daughter had lyme diseas that was cleared by antibiotics.) Anyways, the photos of the mouse's muscle tissue show the damage done by the Lyme bacteria. In this kind man's opinion, another class of antibiotics are what's needed to kill this bacteria. Doxy isn't working altogether.

I have to agree. I'm willing to try something new if am asked.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/24/2008 5:08 AM (GMT -6)   
Chronic to me is being sick for over 8 years straight.... everyday 24/7 for 8 years.... THAT's CHRONIC!

Hopingtofindcure - Wow, if Alfer's would let you, you'd be cussing a blue streak just like me.... and then get censored about one every 2 weeks - haha.

Hey Alfers - Just kidding around again!
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 

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