IgG neg, IgM positive WB

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tazbeau
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/3/2008 1:58 PM (GMT -6)   
This is my situation and has been for some time over many tests. I have lots of symptoms that are typical of lymes and daily exposure to deer ticks , but many symptoms can also be explained by age, injuries or family history as well as some laboratory results.
 
I found the following article. It has convinced me that I do NOT have chronic Lymes. I found this after searching and reading countless articles and research papers available on the netover the last 3 days and spotty searchs over the past 14 years.
 
I would really like to know the opinions of others here. I am new here but I found this site and the discussion of many of the questions I had to be very useful.  So I thought  that others might want to read this article (published July 2008.. Minnesota Medical  Association). I would really appreciate any and all feed back and opinions any of you have to share.
 

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 12/3/2008 6:32 PM (GMT -6)   
This is an interesting article and I too am curious about what others say. Although my husband who has been ill with chronic fatigue for 20 years tested CDC positive on the IGM, he tested negative on the IGG. He has gone downhill ever since beginning antibiotics, which we have thought is a herx reaction of the die off of toxins. He has high bartonella titers and tested positive for rocky mountain spotted fever. Insurance just denied a 2nd month of IV rocephin referring to controversy about his testing and treatment- specifically referring to the IGM CDC positive result in contrast with what one would expect with chronic lyme- the IGG. I read the article you posted and sometimes it is confusing as to what is what. Very interested in whether one can have a positive IGM, negative IGG and have chronic or late stage lyme. My husband's testing was done prior to any antibiotic treatment.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/3/2008 7:06 PM (GMT -6)   
One of the authors of this piece, Johan Bakkan, is also one of the authors of the IDSA's guidelines on Lyme disease.... I don't blieve the IDSA's guidelines on LD. Also, I found the "case study" of the 47 year old woman to be highly insulting. She did not present with any phsyichiatric complaints, they were all physical.... so to refer a person who has a boat load of physical symptoms to a psychiatrist is DISENGENUOUS, bordering on criminal, and at a minimum can only result in a significant delay in treatment for her PHYSICAL illness - whether it's Lyme disease or not.

Anyone who has physcial compaints that a small group of doctors can't "explain" or "diagnose"... does NOT NOT equate to the person needing to see a psychiatrist. And who in the he11 said these 3 doctors were in any way "EXPERTS" in the fields of psychology or psychiatry.... so to refer a patient to a completely different field of medicine that these "physical" physicians have NO EXPERTISE in seems bordeline malpractice.

This piece also cites the CDC's position on LD (which we all know is INACCURATE) and current LD testing (which we all know is INACCURATE at best over 50% of the time).
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
 


m3369
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 12/3/2008 7:16 PM (GMT -6)   
these people are idiots who are clearly involved with the idsa,one of the most criminal organizations aside from the fda that exist.Notice that they didnt tell you the result of the psychiatric exam the lady in the example took.Its because they found nothing mentally wrong.Im sure they sent her out the door with antidepressants and she is still sick.DO NOT BELIEVE THIS CRAP FOR IF YOU DO IT WILL BE TO YOUR OWN DETRIMENT!!!!If i were you i would get a good llmd and either get or continue your treatment.You have to understand these people dont care if you suffer and die as long as they are making money.

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 12/3/2008 8:15 PM (GMT -6)   
I have to step in here and say I don't think the doctors who don't believe in chronic lyme are only out there to make money or are necessarily criminal in some way. I have seen some doctors who are very kind and thoughtful people who don't believe in chronic lyme. I think there is legitimate confusion about whether or not long-term antibiotic therapy works and whether or not chronic lyme exists. We all know that the tests are inconclusive, so there really is no way to prove - except clinically, which is not enough for the scientific community - that lyme bacteria are still in one's system. I DO think the doctors who ignore our symptoms or say we just need a psychiatrist are irresponsible. Some doctors, though, have read the literature, know the whole controversy, and have decided that chronic lyme doesn't exist and that something else is causing our symptoms. We can choose to believe them or not, but I don't think we can universally slam them. I really have no idea why the IDSA has come to the conclusion is has, but again, I don't think it's fair to say that IDSA doctors are all criminals and don't care about sick people at all. I actually thought that article, even if we don't agree with it, was compassionate and did tell doctors to make an ATTEMPT at diagnosing and really listening to their patients.
That's just my 2 cents, but I also think this board shouldn't be used to slam all IDSA doctors and label them criminals.
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
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/3/2008 8:26 PM (GMT -6)   
I stand by my statements... and would be willing to repeat them in any forum.
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
 


tazbeau
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/4/2008 12:21 PM (GMT -6)   
thanks .. well I continued searching the net, made a phone call to the Mn Dept of Health and talked with my primary caregiver 3 times in the last 3 days. I have found very strong opinions supporting both sides of every question I have. I have found many examples of self-contradictory information from the CDC and numerous other medically recognized sources.
My caregiver just called and said she has been doing quite a bit of reading as well, and she gave me a name of a local practice where at least 2 of them are Lyme specialists .. if not by name then by reputation.

I am a reasonably bright individual but have no idea how to choose from the conflicting answers I have read and heard. I have read that long duration AB treatment whether Iv, orally or both, has inherent dangers and potentially side effects that can be lethal or very damaging to other body parts.

If I find out that the living hell I have been going through for the last 20 years or so could have been prevented, I don't think I would be able to stop crying with rage and frustration and having to give up every darn activity I have ever enjoyed. My world has become tiny because of all the problems that have developed over this time period.

With re: to the patient case study talked about in the MMA article I posted yesterday, the whole referral to a psych consult annoyed me too. First of all, who wouldn't be depressed, anxious, neurotic, and agitated with the symptoms that go with this disease and no matter how many people you see, nothing gets better. At this point I think there is simply not a list of symptoms and clinical lab results that the medical world agrees on to diagnose chronic Lymes or to eliminate the diagnosis of Lymes.

I am definitely going to see the specialist and bring with me as many of my test results as I can find. The one from 1985 will be almost impossible to find as I am not sure the clinic still exists, and I don't know if they were even doing the WB then.
I know I was positive and given 30 days worth of AB's... and that was that.. or so I thought.

Even if the specialist thinks I am positive for chronic Lymes, most of what I have read indicates that long term AB's won't make any difference and the risk from side effects is too great and not worth the risk if the problem isn't solved.
So I really don't know what to think or believe.

Those of you being treated.. Do you feel it is helping? do you feel better? or is the purpose primarily to try and prevent symptoms from getting worse?

Also, I would like to know how you would interpret my last two test results:

June 3 2008 November 24 2008

both tests show IgM bands p23 and p41positive and p39 negative

both tests show ALL IgG bands negative.. (one article stated that every human as at least one band positive.. true? false?

So what does it mean that all my IgG's tested were negative?

Lyme ab/WB Reflex
IgG/IgM ab June: 1.06 Nov: 1.58 ( normal 0.00 -0.90)

so my levels are high and getting higher.. what does that mean??

Mn dept of health said there policy is "no IgG.. then not chronic Lymes"
Yet in biopsies using the iris, CNS, and 2 other tissue types, 2 patients tested positive for Lymes, but were negative by both IgG/IgM Western Blot.

I am very pleased to have found this group, and understand and share your frustrations with re: to the disease, the differing opinions, and no way to be absolutely positive about the diagnosis and the lack of or the new course of treatment. My body and my life are miserable, and I would love to be able to find SOMETHING that works and fixes what can be fixed. I know ageing isn't for wimps, but this is ridiculous

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 12/4/2008 6:51 PM (GMT -6)   
my empathy to you- your situation sounds similar to my husband who has been ill over 20 years, diagnosed with CFS until 1/08 when he was tested for lyme. he tested IGM CDC positive yet IGG negataive and based on that our insurance company denied month 2 of IV antibiotics. Yet, he has chronic, late stage lyme...... what does this mean?

popsnannersx3
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/4/2008 7:05 PM (GMT -6)   
As you all can tell we are new to this forum. My husband was dx with Lymes last week. He had been suffering from pain in his joints for 3 months and has no energy at all. A lot of the pain we thought...was due from his past history of service injuries and motocrycle wreck. Plus hx of arthiritis due from the service injury.  The doctor has him on doxcyline 100 mgs 2 x a day. It has really been scarey for us. He has COPD and it seems his breathing has been much worse too. He saw his lung doctor on Tuesday and told him of the recent findings. Can anyone tell us how soon he will be able to tell a difference in feeling better? We realize people are different. Stages are differen.t Can anyone tell us how many stages there are? His lab report showed 41KD IGG Reactive. Does anyone know what this mean? It is so embarassing to have to come to this forum and ask these questions because our doctor can't answer them. And she is an internal doc. Any help would be greatly appreciated. We live in Indiana. Should we go to a disease doctor? I don't know if I have written in the right place or not. I submitted earlier and didn't see it.  Please be patient with us while we are learning the ropes on here. confused

studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/4/2008 8:37 PM (GMT -6)   
Amazing how most of the article is word for word the same as the IDSA guidelines.

So if they are so smart what the the 47 year old woman suffer from?

Claude

studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/4/2008 8:44 PM (GMT -6)   
Here's a thought. Instead of looking for antibodies (my wife's immune system is next to none so therefore no antibodies) why not look for the bacteria:

http://www.textbookofbacteriology.net/Lyme.html

Claude

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/8/2008 2:42 PM (GMT -6)   

Just to throw my two cents in here....there are two television shows current on that are nothing BUT cases where doctors show clean tests and can find nothing wrong, yet eventually the person finds the right doctor who saw their condition before and diagnoses them correctly...sometimes after years of pain and misdiagnosis.   Check them out: Medical Mysteries and Mystery ER.  I think they are both on the the Discovery or the Learning channel.  

Also, there is no other part of medicine that has more drugs then psychiatry and this branch of medicine is known more then any other as the "easy money" medicine.  If all these people truly had mental conditions and not something physically wrong with them...WHERE are all the studies showing how psychological drugs are making them better?  You can best believe if it were possible, in this branch of medicine, even remotely, they would be forcing those studies down our throats.

For me, it put to rest in my mind that Chronic Lyme is real and that doctors just are not familiar with it enough.  As far as the IDSA being "evil," I'm sorry, but I have to agree.   Given today's economic climate, the proof is in our faces that companies are out for the highest profit possible, and this includes the insurance companies.   There are people like my wife who generally believe 99% of people are good hearted and wouldn't do things like we see in the news just for money.  My answer to her is if she truly believes that, go down town at night with a twenty dollar bill in her hand for a week and see if someone will do her bodily harm for just that twenty dollar bill.  Of course I don't want her to do that and I use the example to make a point, but it usually brings the debate to a close. 

Ultimately the point here is if people kill everyday over $20-$100 as we see in the news in a face to face murder style, what makes any person believe that companies wouldn't do some of these heinous things to save millions, perhaps billions of dollars to a "faceless" group of people they will never had to answer to or look in the face? 

 

 


Post Edited (Chris L) : 12/8/2008 1:45:54 PM (GMT-7)


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 12/8/2008 3:36 PM (GMT -6)   
Check out http://www.ilads.org/files/publications_stricker_06_2007.pdf
Chronic Lyme is real.
-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).


kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 12/9/2008 1:05 PM (GMT -6)   
Razzle-
Thanks for that link!

Kitty

kathy622
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 12/11/2008 11:22 PM (GMT -6)   
They might not be "criminals" like Steere and his cohorts who have a mind-boggling list of conflicts-of-interest, but they sure as hell are ignorant, AT BEST.
 
EVEN THE CDC SAYS LYME IS A CLINICAL DX and is UNDER-REPORTED by at least TEN-FOLD!
 
How come THAT message has not been received by the VAST MAJORITY of infectious disease docs?  Two or three weeks of doxy remains the STANDARD OF CARE, despite evidence to the contrary.
 
With all due respect, where the hell are YOU coming from? 
 
Literature about Lyme Disease has been around for at least 30 years.
 
Any compassionate, well-read doctor worth his or her salt would, at the very least, be open to the possiblility that Chronic Lyme Disease EXISTS and MUST be treated.
 
"Confusion" is not a legitimate nor an acceptable excuse for ignorance amongst physicians, and is certainly not excusable given what we know in 2008.
 
In my not-humble-opinion, any physician who comes to the conclusion that Chronic Lyme Disease does not exist
is either 1) ignorant, 2) stupid, 3) ill-read, or 4) inextricably immersed in the IDSA camp. It is MUCH easier for a physician to tow the IDSA line that there is no such thing as Chronic Lyme Disease.
 
Physicians that acknowledge and treat Chronic Lyme Disease are subject to ridicule by their peers and risk losing their medical licenses.  It would be so much easier and profitable it they spent their time injecting Botox and doing nose-jobs.
 
Yet, they chose to help very sick people instead. These doctors are our LLMDs.
 
THEY ARE OUR HEROES! 
 
As a moderator, I am surprised and saddened that these facts are apparently not evident to you.
 
 

Zenith_Z
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 12/12/2008 2:23 AM (GMT -6)   
I was absolutely horrified by the article! To decide they do not know what is wrong with someone and therefore send that person to a psychiatrist is just so wrong that yes, it may be criminal.

I was really curious about Melissa Kemperman because she was titled as “first” publisher of the paper and am always curious when I read this kind of stuff the IDSA camp touts – because I wonder why it is being written at all. And I think the simple answer is one I saw posted by someone on another board, quote “I think the CDC and big insurers probably realized that it costs around $10K per person to treat neuro Lyme with IV Abx. That would bankrupt the insurance companies and the government.”

I find it totally unbelievable that this paper cited IDSA guidelines and practices throughout the entire paper. She even specifically states “Appropriate antibiotic treatment that adheres to guidelines published by the Infectious Diseases Society of America (IDSA) is highly effective for resolving B. burgdorferi infection” when in fact AT THE TIME SHE PUBLISHED HER PAPER JULY 2008, THE IDSA HAD ALREADY AGREED MAY 2008 to re-evaluate it’s guidelines due to the settlement agreement for an antitrust investigation by the Attorney General of Conneticut, which found significant conflicts of interest on the original panel, suppression of scientific evidence, and exclusion of panel members with opposing viewpoints........

What I found also very interesting that she DID NOT MENTION THE IMPORTANCE OF TESTING FOR CO-INFECTIONS, and mentioned them only in the middle of a this and this and unrecognized and/or untreated coinfection with another tick-borne pathogen and that type way.... They are finding in new research that a lot of the reasons for lyme treatment failures is because the people being treated had a co-infection. The most common I think is Babesia and Bartonella although there are others. If you do not treat those co-infections the lyme treatment will not be successful. I wonder also if co-infections are not ever mentioned in these "no you don't have lyme it's all in your head articles" because they are finding that a lot of people with lyme do have tick born co-infections….and gosh, if say you do test postitive for Babesia as well…..then it would be entirely likely that you do really have lyme like the lab you used says you do, don't you? Some of the sypmtoms of Babesia would send someone to a psychiatrist! I think I read something that in counties where Lyme is really bad and well known they are finding that psychaitrists who know how lyme presents are often the first to say hey, i think my patient has lyme and sends them back to their medical doctor for testing.

I looked around on the site the paper was on because I was upset that the site may actually feel this way and support this paper and found that they also published a paper by a doctor that goes up against this first article that you might also find interesting.

http://www.minnesotamedicine.com/PastIssues/August2008/LettersAugust2008/tabid/2651/Default.aspx

Boy, I usually don't post, just learn, but this one got to me!

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/12/2008 6:10 AM (GMT -6)   
all I think i learned about lyme is this:

1. till now i have not found studies of medical research checking if borellia which is regarded to be an insistent bactereia is able to stay in our bodies maybe even somehow "undiscovered" and survive there and cause illnesses like MS or cause symptoms like fatique.

2. i personally got tested igg elisa and westernbold positve, the lab said that this is from an old and sufficiently treated infection;
but my dermatologist found aca (skin manifestation of third stage / chronic lyme) and she was the one who sent me to testing - so how come one once had lyme which is regarded to be already cured and at the same time has developed a skin manifestation of lyme which is regarded to be there only because lyme has not be treaded sufficiently ???????

...so what i have learned is this: everything is possible, there is not much research i have found which could help us and my vet seems to know more about lyme and co- infections than most of the docs i saw till now.

Staris
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 12/12/2008 1:17 PM (GMT -6)   
One Drs. opinion on the subject:

http://lymemd.blogspot.com/2008/12/chronic-lyme-and-poor-igg-response.html

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/12/2008 1:51 PM (GMT -6)   
touché
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
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 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
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
 


ryebeach
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 12/15/2008 3:33 PM (GMT -6)   
alfers said...
I have to step in here and say I don't think the doctors who don't believe in chronic lyme are only out there to make money or are necessarily criminal in some way. I have seen some doctors who are very kind and thoughtful people who don't believe in chronic lyme. I think there is legitimate confusion about whether or not long-term antibiotic therapy works and whether or not chronic lyme exists. We all know that the tests are inconclusive, so there really is no way to prove - except clinically, which is not enough for the scientific community - that lyme bacteria are still in one's system. I DO think the doctors who ignore our symptoms or say we just need a psychiatrist are irresponsible. Some doctors, though, have read the literature, know the whole controversy, and have decided that chronic lyme doesn't exist and that something else is causing our symptoms. We can choose to believe them or not, but I don't think we can universally slam them. I really have no idea why the IDSA has come to the conclusion is has, but again, I don't think it's fair to say that IDSA doctors are all criminals and don't care about sick people at all. I actually thought that article, even if we don't agree with it, was compassionate and did tell doctors to make an ATTEMPT at diagnosing and really listening to their patients.
That's just my 2 cents, but I also think this board shouldn't be used to slam all IDSA doctors and label them criminals.
Hello moderator
Ther have been very few documented cases of lyme bacteria found in the human body after any duration of time but I happen to one of them . Very few people have their organs removed and tested. I had mine tested after the removal out of my own financial resourses hoping to help someone in the future not have to have their life halted in such a manner as most of us so I figure it was money well spent . This was done by tissue biopsy from a removal of my gallbladder which was sent to Ca  which came back as plasmid positive for the lyme bacteria in fragment form after 11 months of iv therapy . From what I understand it has attached itsself to my DNA. I have been a very sick individual for over 2 years and just wish the medical community in general would wake up and take a positive outlook and informed approach  on how to treat this devestating disease and alot money for the reasearch it deserves . I am sooo tired of hearing doctors say they are on the fence whether they believe in it  or not . I wish they could walk a few days in our shoes and suffer the pain fatigue anguish and frustration along with the financial hardship and maybe they would wake up then not that I would wish this on anyone.
  I am still in fighting mode so hopefully I will beat this I have also had bart and babesia and severe sleep disorder thyroid issues nerve damage neuropothy which is very scary fatigue and just total frustration on how to get my quality of life back as many of us truly look forward to. I just loved life and even though there were always obstacles I never gave up and I refuse to now
Take care
ryebeach


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 12/15/2008 7:17 PM (GMT -6)   
First of all, ryebeach, thank you so much for posting your story. I really wish more people could have that kind of tissue biopsy done -- THAT would certainly prove why we are sick. Have you found any treatment that has helped you at all? It sounds like you have a host of complications. I'm gradually developing more and more complications too...just today a doctor told me that my hemoglobin count was low, meaning anemia. He's re-doing the test since that one was done awhile ago. :(

On another note, I think some of you misread my post. I personally do believe in chronic lyme, and I do believe LLMD's are (mostly) heroes. My point was that not ALL doctors who don't believe in it are criminal and only out for money. Some of them are, certainly, as are some people in every profession. Half of my best friends are MD's, and I would bet that most of them don't believe in chronic lyme (they know I have it, but we don't really discuss it). They are not evil people who don't care about their patients. They have most likely been educated by the IDSA, or by institutions - including our government (the CDC) - that support the IDSA's stance. They have HOURS of reading to do each night on their field of specialty, so to say they have chosen to be ignorant about lyme is really just not fair. They do their reading in their field, and for other fields, like infectious diseases, they mostly believe what they've read, heard, and been taught from the "experts" in those fields. We all know that, to our detriment, nearly everyone else in the country believes the IDSA to be the "experts" in infectious diseases. Some of us (including me) feel that they're anything but expert, but we can't blame every doctor who has been taught their mainstream ideas.

Even more importantly, my personal opinion doesn't matter *on this site.* If you reread the rules, they say that this is a forum for support, NOT for pushing one particular treatment option, and that slamming anyone else is not allowed. I admit that it's hard for lyme patients to resist slamming the IDSA, but when people start saying ALL doctors who follow IDSA guidelines are evil and only out for money, I feel that I have to step in. We can debate all we want, but we have to respect everyone else's opinion - including those that don't show up on this site. If that doesn't make sense to you, I'd be happy to explain the reasoning behind that particular forum rule (as I understand it anyway).

Why don't we focus on getting better and finding treatment options that work, rather than universally slamming those who have delayed our treatment?
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


ryebeach
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 12/15/2008 8:52 PM (GMT -6)   
Hi Moderator
I also believe this whole lyme issue is unexplored territory for most MD's and they are human just like us . I know of one doctor that had this to a very severe degree and has taken years about five now to recover about 80% He at one point was told he would die . luckly he found an llmd to help and has taken control of his life.
I feel we are in the exploratory stage of this disease and like when organ transplants started you may remeber the experimental insurance coverage policy just like with lyme.
I have spent over 36 years in unexplored territory with a brain injured son from menengitis fighting for education rights constitutional rights for him and when I thought I was at the end of the tunnell of stress and making people recognise the law I was knocked flat out with the neurological lyme bart babesia and several surgeries the last one I had tachnacardia and took 3 days to come out of the anethesia from a day surgery
I have done 19 months of IV therapy Rocephin zithro doxy and then it was determined experimental and now I am on treatment for the bart I have neuropathy on my left side from face to feet brain fog lyme rage sleep disorder vit d deficency my test came back at a 10 normal is 65 autoimmune disease and all the word recall problems attention deficet and suffered a stroke from all of it cognitive functioning is way below what I was before and have not had a good full week in months since stopping the IV in june due to financial restraints Total lost wages and out of pocket expenses like many of us well over 100 thousands dollars
So much for a good retirement and marriage has suffered terribly . I am now on rifampin avelox vtvanse topamax lyrica and vicodin I was a just once in a while tylenol and advil user before now I feel flooded with all these meds but without anything for a week I did not even know what direction to take in a familiar grocery store I frequent .
I did not think you were trashing anyone or not believe anyone . I commend you for taking your valueble time to try to keep everything straight on this site
The message board has kept me sane through alot of this and for this I am greatful
take care
ryebeach

ryebeach
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 12/15/2008 9:26 PM (GMT -6)   

Hi popnannersx3

from what i recall igg  is usually lyme infection after a long period anything over 90 days I believe  41 band is very common in this but you need 3 or 5 bands to be cdc positive  ther is info online to interpret these results

also look for ticker she is very knowlegable in this field of interpertation  Most dr's are not familiar with reading the results but at least yours will consider the possibilties with a clinical diagnosis alot of the very ill lyme patients do not have several bands showing and testing is at most 60% reliable

I would definately have your husband look into the co-infections like babesia which can mimic copd and also bartonella along with another I will try to spell it enchrolosis something like I have had all but the last one

\Some of the most ill people do not have bands that show so it has to be approached both with clinical findings and testing from reputable labs igenex quest path and so on . also have his immune system checked . from the plasmid gene factor you can develope bleebs which I have from my mutated genes in my lungs which were never there before all of this  I use and inhaler and also advair for the shortness of breathe from the babesia   What a battle it has been but I am a fighter with a strong constitution which has been really tested. It does not sound like an adaquate dose of doxy at 200 mg daily I think 300 is the adaquate treatment from what I have experienced from some of the top llmd's in this country

If you research protocals for treatment of late stage lyme you will find a vast amount of info to guide you or feel free to address all of us veterans of this disease that effects families friends as well as  the patients themselves  

after about anywhere from 7 days to 3 weeks of treatment he can experience a herx heimer reaction which feels like every symptom is magnified so let your doc know and try to chart them so he will be prepared to ride it out they do lessen in severity after a period of time but can be expected

Mine were very severe since my lyme had gone into the neurological degree along with having 2 other co-infections

I wish you all the luck and blessings to come your way

take care and stay informed and we will always be here to support your husband and family with any answers we can

Ryebeach

 

popsnannersx3 said...
As you all can tell we are new to this forum. My husband was dx with Lymes last week. He had been suffering from pain in his joints for 3 months and has no energy at all. A lot of the pain we thought...was due from his past history of service injuries and motocrycle wreck. Plus hx of arthiritis due from the service injury.  The doctor has him on doxcyline 100 mgs 2 x a day. It has really been scarey for us. He has COPD and it seems his breathing has been much worse too. He saw his lung doctor on Tuesday and told him of the recent findings. Can anyone tell us how soon he will be able to tell a difference in feeling better? We realize people are different. Stages are differen.t Can anyone tell us how many stages there are? His lab report showed 41KD IGG Reactive. Does anyone know what this mean? It is so embarassing to have to come to this forum and ask these questions because our doctor can't answer them. And she is an internal doc. Any help would be greatly appreciated. We live in Indiana. Should we go to a disease doctor? I don't know if I have written in the right place or not. I submitted earlier and didn't see it.  Please be patient with us while we are learning the ropes on here. confused

kathy622
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 12/15/2008 11:18 PM (GMT -6)   
Alfers, I give you a lot of credit for being a moderator.  I certainly understand that this position isn't easy and it's really a thankless job, for which you don't get paid. It sure isn't something I'd be willing to take on, especially at this point in my life. If it weren't for moderators on all these forums, the forums wouldn't exist.
 
Nevertheless, I do disagree with your position.
 
Tissue biopsies to prove the existence of chronic lyme should not be a standard we should strive towards. Unlike lupus, where skin, liver and kidney biopsies are performed to confirm diagnosis, and more importantly, to assess the degree of disease severity, tissue biopsies for lyme disease would necessarily be much more invasive, as the spirochetes are found in the brain, heart, bladder and other internal organs that essentially rule out routine biopsy.
 
With the knowledge, research and literature that we have in 2008, why should anyone who has Chronic Lyme Disease have to subject themselves to an invasive procedure to "prove" his/her diagnosis of Chronic Lyme Disease?  Why on earth are clinical diagnoses of Chronic Lyme being held to such extreme scrutiny?  The vast majority of LLMDs treating those with Chronic Lyme aren't a bunch of kooks.  They've had traditional medical school training.  No one would blink if a doc prescribed tetracycline for a year to a kid with acne.  Yet, a sick kid with lyme is "lucky" to get 2 or 3 weeks' worth. Something is so very, very wrong.
 
Maybe I did "misread" your post.  But it sounded to me like you were defending doctors for being ignorant.  Lyme is pandemic.  WE all know that.  Why is it OK to let physicians who surely see patients with symptoms that could be due to Lyme and coinfections, off the hook? 
 
I am a mother of two sick kids, one of whom is doing very well (not sick too long) and the other, who has been struggling every day for the past two years to regain her health. She has lost much of what should have been the best years of her life.  
 
So from where I sit, ignorance might be bliss, but its not an excuse. I don't think that all doctors who don't "believe in" (aka: understand) Chronic Lyme are bad people who are money-hungry.  I just believe they are uneducated at best and unwilling to listen or understand at worst. I just can't for the life of me comprehend how those same doctors can so easily accept and believe in the moronic concept of "post-lyme syndrome." 
 
Reality trumps ivory tower academia any day. 
 
I'd bet you any amount of money that if one of these doctors' kids was so sick s/he couldn't life his/her head off a pillow, these same doctors would err on the side of caution and extend that "curative" 2 or 3 weeks of doxycycline or whichever antibiotic far beyond what the corrupted IDSA "Lyme Doctors" recommend.   
 
I have bought copies of "Cure Unknown" and distributed them to our pediatrician, my own doc, and other people in my community. I have distributed literature to the school district "big guns" as well as teachers and guidance counselors. I have sent links about lyme disease to many of my friends and family.  I ultimately hope to have a screening of Under Our Skin in our community, as so many in my area are affected. 
 
Since you have friends who are MDs, I would encourage you to do the same and be more "in their face" about this. This is what you're living through, afterall. If these "friends" are really true friends, they should be open and willing to hear the reality of Chronic Lyme.  Maybe you can give them a copy of Cure Unknown and send them a link to an Under Our Skin trailer. 
 
The unfortunate reality of Chronic Lyme Disease is that eventhough you are a sick person, you must advocate and spread the word in your community.  Because if you don't, who will?  
 
I realize that you might not be a parent of sick kids and are perhaps less jaded and more forgiving.  I remember when I was like that during my own struggles with illness (long story).
 
And, about those hours of reading those docs do, I highly doubt they'd even come close to the amount of reading and researching that you, me and countless others do on a daily basis.
 
I think the vast majority of people on this board and others are extremely focused on getting better and exploring any and all treatment options.  At the same time, we must hold accountable and keep in mind those whose mission it is to thwart and discount such endeavors.
 
Lastly, your personal opinion most certainly does matter, as does everyone else's on this site.  No one could offer support if we didn't have our own opinions, which are formed by our experiences.
 


 
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