posted
I have been receiving treatment for a long time for suspected lyme disease without any noticeable improvement. Should I begin to question the diagnosis or pursue alternative treatments? Maybe I don't have lyme disease at all? I'm scared.
posted
Holy mackerel...talk about attacking a board that's doing amazing work!!! I'm too sick to quote the plethora of research but something gives me the feeling you already know all about that and are here to either cause trouble or get people revved up...
Otherwise your questions would have been phrased waaaay differently and perhaps more politely. "Quackwatch" anybody?
IP: Logged |
posted
what nonsense.. and really rotten to post this on an illness support board.
have you posted such things on ms, aides, fibromyalgia, neuropathy and other complex chronic illness boards?
why the bee in your bonnet regarding lyme?
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
TheTruth
Unregistered
posted
Not attacking lyme patients. But haven't you considered that your symptoms may not be lyme disease at all? Especially if you are a person (and there seems to be a lot of you) who have multiple negative tests, nonspecific symptoms, and you just aren't getting better after months and months of antibiotics?
At what point do you concede that your symptoms "MIGHT" never have been lyme disease to begin with?
IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
This is a support forum. If you don't want or need support, why are you here?
Most people here don't diagnose themselves with lyme disease. This is done by an M.D. who is well versed in TBI's. Many of the M.D.'s that specialize in lyme disease have had the illness themselves and thus have a special interest in TBI's.
It is not unusual for patients here to go decades with undiagnosed infection. I have had undiagnosed lyme and co-infections for decades myself thanks to the uneducated run of the mill physician.
Most of us have considerable reactions to treatment. People that come to my house used to have to wear a coat because I could not tolerate normal temperatures. Now I can. That is only one symptom out of many that has improved.
It is not unusual to have improvement but still be ill. It takes a long time to get well after decades of untreated infection. Would you give up and just curl up and die? I think not!
Please avail yourself of the many studies that are available so that you will know what you are talking about.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
what qualifies you to judge an entire board of people, of whom you know nothing of their health issues, tests, symptoms or progress?
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This may help answer some of your questions about why testing is so difficult.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others. This is why treatment and resolution of symptoms are vital.
3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
Your truths add up to be one big LIE.
Posts: 1076 | Registered: Apr 2003
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
This is obviously a troll...
Dont waste your time with a response..
They changes their original post to something else. just SOB
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
evergreen
Unregistered
posted
- Here's my clilnical diagnosis of TheTruth: someone who is attention-seeking, lonely, frustrated, a thrill-seeker and self-destructive. Who else would post such rubbish? Now..where's my DSM lV??
IP: Logged |
TheTruth
Unregistered
posted
I edited my original post as, in retrospect, I realized that it might have been more antagonistic than I had first intended.
But, my original question remains...
How can you be so sure of your diagnosis? How can I be sure I am doing the right thing and not missing the boat entirely?
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Truth,
Here are some other things to consider. But, they thing is, a good LLMD will consider all this.
(And, I would add porphyria to the list but that is far too much work right now.)
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
Considering that I and most of the rest of the board have indeed tested positive for TBDs, no, I don't doubt I have Lyme disease.
Where are you getting that we have tested negative and furthermore that we aren't improving?
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
How can you be so sure of your diagnosis? How can I be sure I am doing the right thing and not missing the boat entirely?
Success is the name of the game!! If we're getting well, then we stay the course!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I should add that the very best of health habits is required for any treatment to have a chance. Many here are to be congratulated for stepping up to the plate in that regard.
posted
That just seemed to be my sense. I'm new to the board, but it seems like so many people have been fighting this for so, so long without much success. I don't know what I'd rather have - lyme disease (which is the assumption I've been under for 2 years now) or something else entirely unrelated.
Maybe I'm wrong, but it just seems like so many people have negative or equivical testing and aren't getting substantially better.
Sorry if I offended anyone. I wasn't trying to question YOUR diagnosis, just trying to express some of the concerns I have over MY diagnosis and address the doubt I have on a daily basis.
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The more you can read from authors listed above, the more this will be explained.
-
I forgot to add this new book. I am learning something new everyday from it (a slow reader, am I).
-
This book, by an ILADS member LLMD, has a lot of good information:
There are so few of them there! That is what concerns me so much. Over 17000 users and just a handful of success stories? That is exactly why I doubt my diagnosis so frequently. I was diagnosed "clinically." I haven't gotten better but have been told I need to be patient. I've been told that I have co-infections...blah blah blah.
Am I just weak or don't you ever question whether the path you are on is the correct one?
IP: Logged |
Do you go to an LLMD? What therapeutic regimen are you on? What are your symptoms? How have they changed since starting therapy? What labs were your tests sent to? What specifically were your results?
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
TheTruth
Unregistered
posted
I had 4 months of IV rocephin, 6 months of IM penicillin (3/week) and for the past 4 months have been on a combination of azithromycin, mepron, and doxycycline.
I feel significantly worse now than before treatment. My main symptom then was bilateral knee pain. Now all of my symptoms are neurologic (feelings of depersonalization/derealization, brain fog, problems with depth perception, head pressure, headaches)...
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This is not easy for any of us.
You said: " . . . I've been told that I have co-infections...blah blah blah. . . ."
Co-infections are just as serious as lyme is.
"Blah . . .blah . . . blah" ????
I'll stop here as I've wasted time and exhausted myself.
Either step up to the plate or get out of the game.
If you are so sure nothing is wrong, go live your life.
If something is wrong, it's up to you to do the work. Doctor's can't do it all.
Read. Read. Read.
And - oh - maybe search about porphyria. It might be what is keeping you from progress. It's very complex.
I offer you one last courtesy by posting some of my research about that.
Best of luck in stepping up to the research involved, then, in figuring out what you need to do next. I can tell you harassing other lyme patients is not a healthy outlet.
posted
Wow. That was harsh! I guess this forum is only for those who never have any self doubt. I didn't realize that when I posted...
I guess you're a more secure person than I am. I'm glad you are so sure of yourself, your diagnosis and your treatment. You would think that people would be more supportive, however, to someone facing a crisis...
I've invested so much time and money in this, but feel worse now than before treatment. In retrospect, the knee pain was nothing! I wish I had never been tested for lyme. I wish I had never been treated! I'm worse now than before treatment! Don't I have a right to question my diagnosis without being mocked or dismissed?
IP: Logged |
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
TheTruth
Unregistered
posted
everything. And I do mean EVERYTHING was negative except for a positive elisa and a western blot showing a single 41 kda band.
IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, I agree with tutu, your original post was quite inflammatory.
Read, read, read. You sounded as if you had been reading here for a long time. If that is the case, you should already be aware of the many issues that can complicate lyme treatment. Have you worked on any of those?
Mold, heavy metals, inability to detox properly, methylation cycle issues, co-infections, viral infections etc. etc. etc........
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Have you tested again since the time you started therapy? Sometimes antibodies aren't made till after treatment has begun. I tested postive for only one band at my first test. A month later, I had five positive bands.
Were you tested for the other things keebler mentioned?
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by TheTruth: You would think that people would be more supportive, however, to someone facing a crisis...
Your original post was in attack-mode, not one asking for help, so what did you expect?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Are you being seen by a top notch LLMD (lyme literate medical doctor)?
If you really want help, please give more history. What other tests have you had, how long have you been sick, what are your symptoms, what treatment have you had etc...
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Some of my posts no longer make sense as you've changed your posts to which I responded.
In fact, many posts of yours have been significantly altered.
going back to where
You said: " . . . I've been told that I have co-infections...blah blah blah. . . ."
that implies you did not treat ?'
You did not start out here asking, "what else?" "How else?" but by attacking those who are working very hard and not even taking the time to read some of the articles offered in explanation to your questions.
Maybe that's just fear of defeat talking. It can be very hard. But there are answers and many ways to approach this. Have you read the Buhner and Zhang books?
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Truth, doubt can be a natural part of any disease...I've doubted my lyme initially but I am one of the fortunate who have received some tangible evidence of infection through bloodwork.
Others on the board here would argue that other infections can be just as difficult as lyme. Have you been tested for viruses?
I don't think that your question was offensive per se but you have to watch your tone and phrasing on this board especially when people have been sick a long time and are looking for positive momentum and answers...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
TheTruth, You need to stop posting inflammatory comments and then deleting them when someone calls you on it. Get ahold of yourself and think before you post. You will not get the help you want if you are rude.
We'd like to help you if you truly want the help.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TheTruth
Unregistered
posted
I admit that I edited my first post. I think that was the only one I edited. Reading back over it was more harsh than I had intended. I wanted to express my self doubt. After seeing the negative reaction to it I changed it. It was not meant to be offensive.
I have not seen a LLMD. Just been seeing my supportive GP, but have gotten frustrated by my lack of progress.
If anyone knows a doctor in central NJ (I live in Lambertville) please let me know. I also posted in the "Seeking a doctor" segment. Sorry if I offeneded anyone. It was just my self doubt speaking.
IP: Logged |
evergreen
Unregistered
posted
- - As much as we'd all like to believe TheTruth's
"new" and altered post, his/her responses seem
rehearsed, almost as if he/she was expecting us to
posted
Why jump to the conclusion that I am being dishonest or manipulative? I would guess that patients with chronic lyme disease have likely been the subject of many people, including physicians, who are quick to judge them as "frauds". This has happened many times to myself. You would think that would make people more sensitive and less willing to do the same to others.
Anyway, if anyone knows a LLMD around me, please let me know. I'll address some of my concern and doubt about the diagnosis to him/her as it seems like many people on this board are unwilling to tolerate a person who has even a hint of self doubt or wonders if their symptoms could possibly be unrelated to lyme disease.
I wish I had never taken those first antibiotics and wish I had never received the "chronic lyme" diagnosis, as for me it has been a path of continual deterioration, not improvement.
IP: Logged |
posted
evergreen: Grow up. If you don't want to help me out or just don't like me, then just ignore my posts. I understand how my first post might have been misinterpreted. I subsequently edited it to make it less offensive. If you can't accept that, that is your problem, not mine. I am not judging you, so don't judge me!
IP: Logged |
It's amazing that you were able to get 14 months of antibiotics (and IV antibiotics at that) based on one test with only one band elevated from a doctor who isn't an LLMD. Wow.
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That was my thought exactly too. Amazing doctor!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What have you been treated with, what doses & for how long?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What made your GP suspect Lyme?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What "rule-outs" were done?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Which co-infection tests were done?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
Topic Closed
UBBFriend: Email this page to someone!
Printer-friendly view of this topic