shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I'm going to answer your original question, because I think there will be people reading who really want to know the answer.
You asked, "Do you ever doubt your Lyme diagnosis?"
Speaking for myself, no. I had a blood test positive enough to qualify for notifying the CDC. I lived at the time in a very Lyme-endemic area, had indoor-outdoor pets, and had pulled ticks off my pets and myself more than once. Though my disease started atypically, it progressed quite typically, and responded to treatment quite typically.
Lyme can be more than borreliosis, because ticks carry a lot of germs. If you are not getting well, ask your doctor why, and suggest running more tests to look for co-infections or additional problems. It doesn't mean you don't have Lyme necessarily. It might just mean there is more going on.
Regards,
Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My WB didn't turn fully CDC positive (I had a "classic" bulls-eye & was highly symptomatic) until after taking down Babesiosis (reflected by positive AB tests) and Txing Bb for several months.
When the Babesiosis came back up the WB response went down. With each different co-infection that flared, the WB response went down. As each co-infection was treated, my AB response on the Lyme WB became more positive again.
Co-infections can inhibit immune response. Since Bb is so good at hiding from the immune system, your body often goes after what it sees as a more immediate threat. I believe it's attention gets distracted from the Bb.
It IS possible that you could have something else. Some of the co-infections have symptoms similar to Borreliosis. There are also other diseases which could have similar symptoms.
A physician who is well-versed in the intricacies of the Lyme Disease complex would be best able to differentiate, taking symptoms and treatment response (or lack thereof) into consideration.
If your GP is open to properly treating Lyme, but maybe not so well-versed, perhaps it would benefit you both for you to be evaluated by a LLMD.
I have never doubted that I had Lyme, but I have thought that perhaps some co-infections had been missed. I had also on occasion thought, "How do I know I'm not dismissing something as a Lyme symptom that's not Lyme-related?".
When you understand all of the flaws with the IDSA guidelines and the Lyme testing, it's pretty easy to have doubts and lack confidence in a doctor's reliance on them.
The testing flaws pointed out in Pam Weintraub's "Cure Unknown" really show just how USELESS the test can be for AT LEAST 3/4 of those actually infected. It also points out that the "bulls-eye" doesn't even carry as much weight as they've thought (part of the reason the test design is flawed).
I'm sending a pm.
-------------------- 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
Sorry, somehow I missed this post before:
quote:Originally posted by TheTruth: 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)...
If you had babesiosis & it wasn't Txd first, you likely would not have had much success with Bb Tx.
Also, I believe that Doxy can decrease the effectiveness of Mepron(atovaquone).
GSK lists that tetracyclines can decrease the plasma concentration of atovaquone by 40% in the Malarone (atovaquone + proguanil) prescribing info, but the interaction is with atovaquone.
Lyme DOES progress to neurologic symptoms. Babesiosis can cause them as well. Die-off from Babesiosis can cause neurologic symptoms to increase.
Are you taking any Artemisinin or Artemesiae?
You said that bi-lateral knee pain was your main symptom. Was it your ONLY symptom? I'm not certain, but I think that bi-lateral knee pain might be one of the co-infections.
I believe that Lyme usually starts out with uni-lateral or migrating joint pain, but I could be wrong (I'm not a doctor).
Babesiosis and Bartonella can both cause some nasty headaches. Perhaps you could also have Bartonella?
It could also be that you've taken down the Babesiosis & now Borreliosis is taking center-stage again.
Here's a site where you can input all of your symptoms & see what you come up with: WrongDiagnosis.com
-------------------- 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 |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
TheTruth, you wrote: I have been receiving treatment for a long time for suspected lyme disease without any noticeable improvement.
I understand your frustration. If you were seeing an experienced ILADS LLMD, they would be looking for the reasons for this, including using their clinical judgement to determine if you have lyme disease or something else.
Contrary to what some members of the IDSA say, LLMD's do not diagnose everyone with lyme disease. My LLMD ran many many tests on me and uncovered a number of issues. When improvement wasn't as fast as he expected, he kept looking and uncovered some crucial issues. Not all LLMD's are this persistent. Get numerous patient recommendations before choosing.
You wrote: Should I begin to question the diagnosis or pursue alternative treatments?
By all means, question the diagnosis. Everyone who is considering embarking on lyme treatment should use a systematic, logical process in determining the liklihood of whether they actually have lyme disease or something else.
This process must include an experienced, LLMD in my view, coupled with tons of research on the patients part.
You wrote: Maybe I don't have lyme disease at all? I'm scared.
It's not a bad thing to be scared. It is a way that our body and mind alerts us that we need to be cautious. Maybe you don't have lyme disease. None of us on this board can tell you if you do or don't. You need an evaluation by someone who has the appropriate training and experience.
I hope you get what you need.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You probably got all the mercury information when you were first dx with lyme as all LLMDs know lyme and mercury seem to go hand in hand.
And, I assume you did the liver support and detox as directed.
However, as a reminder, GiGi posted this reminder today (posted 01 September, 2008):
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Keebler wrote: You probably got all the mercury information when you were first dx with lyme as all LLMDs know lyme and mercury seem to go hand in hand.
She hasn't been diagnosed by an LLMD from what I can tell. Is that correct TheTruth?
Hopefully she'll come back and respond to some of the quesitons that were asked.
Frankly, I think he/she already had their mind made up based on the subject line, registered name and first post which was removed and replaced.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Thanks, TerryK.
time to put this puppy to bed, then. It seems as many originally thought: a cluster of bombs. I've never seen so many posts change so drastically or just disappear.
But, we all wonder "what if" it's just anger and fear talking. But it appears that is not what was happening here.
posted
um.... i was here when you first posted, and even tho you have edited and changed tone, i still find your posts extremely offensive to this board. it's clear that you are manipulating this illness support board on a holiday weekend, at which time you can assume there are no moderators around.
you came here saying the "truth is:"
that the majority of posters here are touting treatment practices that are "not based in science", and are "continuing to suffer". that "most all" have negative tests and have been treating with years of antibiotics with "no improvement", and that we "celebrate" bad days by calling them "herxheimers" and on and on. your original posts pushed the issue that those with negative serology not only should doubt their diagnosis and treatment, but that they were doing harm to themselves. you crossed a line, in my opinion, of pushing dangerous medical advice, as the basic rule of medicine is that tbd's are to be clinically diagnosed and treated.
your very first post and moniker were posed as you telling others the "truth", basically that these infectious disease conditions and their treatments are total b.s. which is why i posted my question to you early on.
"what qualifies you to judge" another's illness, treatment, ect.
after being asked questions that you could not, or would not answer, your thread topic and stance changed to a patient who is in deep doubt and concern over their own diagnosis, with only one, seemingly harmless question.
you clearly come across as highly manipulative, at best.
based on all of your posts, edits and deletions, i highly doubt that you are a lyme disease patient.
trolling is prohibited here, i'm sure this thread has been reported.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
If you have been treating aggressively for a couple of years and have seen absolutely NO improvement than YES, you should doubt your diagnosis and pursue other avenues. I'm not sure what you differential diagnosis has involved but there are a great number of things that can mimic lyme-like symptoms.
I'm not saying that you don't have lyme but it seems the likelihood, based on your western blot results AND your lack of a response to antibiotic treatment, that there is a higher probability that it is something else versus lyme. Could it be a tick co-infection...sure. Considering your positive LYME ELISA, something is cookin' in your body.
Some thoughts of other infectious diseases to be tested for are babesia, mycoplasma, viruses, brucella, Q-fever....
Can't recall where you are from...I know of a fantastic Infectious Disease doctor (Boston) who is the most thorough MD I've ever met with regard to ruling out other infections.....not a doctor for long-term treatment of lyme however.
All of us, even those of us who clearly have lyme but have not responded to short-term treatment, should rule out as many other co-factors as medicine/science will allow.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
TheTruth
Unregistered
posted
I appreciat the helpful replies. I guess I was not one of the "lucky" ones to have a CDC positive test result. This made treat (i.e. getting meds covered) more challenging, and has led me to question the diagnosis on many occasions. It is so hard when 9 doctors tell me I don't have it (and most said I probably NEVER had it) and just one tells me I do. But, I will go to a LLMD for a second opinion where I can ask some of the lingering questions and address my self-doubt.
As to the people who have been less helpful and, in some cases, downright mean, I don't feel your actions are fair. Clearly the suggestion that someone labeled as "chronic lyme" MIGHT not have lyme, or now doubts the diagnosis, has touched a sore spot with you. I am not sure why, but imagine that it is more a personal problem of YOURS rather than something I said or did. I don't know why this thread was brought to the moderators attention, but can not imagine any rational person disciplining me for describing my lingering fears that I have wasted my time treating an infection that was never really my problem. I think objectively looking at our syptoms and not blinding saying "it must be lyme" is healthy and can not imagine why this was so offensive.
IP: Logged |
posted
Okay, everybody. Time to play nice. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10178 | From Illinois | Registered: Aug 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
TheTruth -
You have seriously misrepresented yourself.
Your tune has changed as with a magic wand (and disappearing posts) that were extremely combative to now sounding like you are a victim of playground bullies.
You cannot understand the reactions you got? You struck out hard and fast, for cryin' out loud. You've been playing hide and seek with your posts that were blatant insults. Exactly how did you expect us to react? And you don't understand that?
Many here try hard to help others. It is exhausting but we know it might help someone with information and a link to experts.
Still, just in case you are for real, many still posted some great suggestions for anyone wanting to learn more or find a good doctor.
We have made it clear to rule out other stuff. That is frequently part of early replies to new posters here. You have long lists of other stuff to consider. But if lyme IS involved, nothing will work if that is not addressed properly. Same with the coinfections.
The research posted for you explains why. I hope you will take the time to read it.
Whatever kind of help you need, I do hope you get it.
-
[ 01. September 2008, 08:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Next time, I'll remember to QUOTE all inflammatory posts!! Then we would have proof that WE are not the ones overreacting.
I hope you get the help you need, Truth.. if you indeed need any help.
a side note... I did send Truth some info by PM.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeloco
Unregistered
posted
Maybe it takes years of treatment for some. I am one of them.
Went on vacation to another state, been walking my dogs daily and other than some cognitive problems...I can't complain!
Oh, and by the way, my test all came back positive after three times being tested by a rinky dink lab. My mri showed leisions and my spect scan showed vasculitis and since antibiotic treatment, my second spect was o.k..
Remember that chronic means ongoing. Like cancer, there is no cure but remission and lots of people that I know are living a happy productive life in remission.
Tell me what diseases seem to have a cure? Hell, it's not ms, fibromyalgia, cfs, lupus, als, rheumatoid arthritis, cancer and the list goes on.
Today is the day they collect for muscular dystrophy and that's also because there is no known cure.
I would much rather be taking antibiotics for years, which I have and haven't been sick during that time while everyone around me has colds,flu and other illnesses. MS patient's take steroids and cancer patient's get chemo and/or radiation and yet you believe that somehow their safer than antibiotics?
Relax and give the medicine time to work. For some it doesn't take as long as others. Most all of medicine is experimental.
IP: Logged |
I hope you find the help and support you need though it doesn't seem like you'll find it here as many seem to have already judged and sentenced you.
Even if you're not on the up and up, a kind word can only benefit the one giving it.
Posts: 590 | From Canada | Registered: Oct 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Well, it sounds to me if you don't think you have lyme disease, then you should just stop treating it.
That's completely your choice. It would be more appropriate then for you to spend time on other boards that might better fit your diagnosis, since clearly you don't think it to be lyme.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Over 140 doctors told me that I wasn't sick, and or misdiagnosed me. Some made diagnosis which were accurate, but didn't address the underlying cause. I've been diagnosed with 16 different things. I've been sick for 22 years, and I am 30 years old. I endured immense suffering from age 9 onward.
I was on treatment for Lyme Disease for 3 1/2 years before I noticed "any" improvement. At best, after 6 years, I'm only about 40% functional. I doubted my Lyme Disease diagnosis (It wasn't a fact) up until 2 months ago.
Even today, I now realize that something else is wrong, given I'm not recovering well. Another infection is at work, so I've sent out additional testing. Is it a surprise that finally another test revealed another infection?
I tested positive by CDC and NYS, after testing negative for the last 22 years. If you want to know the truth, then you have to do your own homework, and make your own choices. Either way, you can't be indecisive. You have to make a choice, and the choice should be based on the best information you have available, even if it's limited, speculative, or a hypothesis.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Truth.....My dr. told me I had lyme and I don't want to have it...I do think so many have it and professionals just don't know enough yet....50 yrs. from now I wonder what the medical society will have to say(of course, no apologies)...All I can tell you is I get from all these people on this board.....so much info and help....Faith, Hope and Love....the greatest of these....Is Love......what I wish for you......Peace. Posts: 18 | From Tennessee | Registered: May 2008
| IP: Logged |
lymeloco
Unregistered
posted
hey truth, the same holds true for people I know with ms. Again, we are all guinea pigs!
IP: Logged |
posted
To throw in my two pennies, after as long as you have been treated with no improvement, and actual worsening, here is what I would consider doing.
Stop your meds for 2 weeks (run this by your doctor first to make sure it's safe to stop, of course). Keep a daily symptom journal and note how you feel a couple times a day - so easy to forget.
In two weeks, have a Western Blot test done by IGeneX. Your supportive GP should not have a problem with this. Costs around $200 but it's an investment worth making.
You'll have your results in a couple weeks. IGeneX is 90+% accurate in detecting Lyme. You can feel pretty confident with your results from them. The key is to interpret them with a doctor who is lyme literate. You could have a "negative" result, but if, for example, you tested positive for Band 23-25 or Band 31 that would be a red flag. Again, an LLMD type doctor would best help you interpret your results.
By doing this, you get a month off antibiotics and the best test around for Lyme. Perhaps that will help either convince you that you are indeed infected with a really tough strain of the disease, or you are not.
Maybe you will feel better off all your meds? That could tell you something.
Since you have some strong opinions on the validity of a lyme disease diagnosis, doctors who dismiss lyme, etc, I encourage you to read this report. It is long, but it will sure show you why lyme is so very political, why some doctors dismiss lyme, and how money is at the root of all of this.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
webmeg wrote: Maybe you will feel better off all your meds? That could tell you something.
If you are a person who has trouble getting rid of borrelia toxins, you may feel better after being off abx for a time but that does not mean that you don't have lyme.
I had to take a break for elevated liver enzymes and had a major improvement in my arm which had been bothering me for a number of years. It was so bad that I couldn't reach up to get something out of the cupboard.
At that point I was on cholestyramine for biotoxins which was helping remove them from my body but since I was on abx I was killing bugs and continuing to generate toxins. Going off abx gave my body a chance to remove more toxins than I was generating and my arm showed great improvement in a very short time.
Lyme is complex. Find an LLMD that you trust who can look at possible reasons why you aren't feeling better or maybe point you in another direction for possible causes of your symptoms.
If you want to get well, you may need to look into heavy metals, mold, biotoxins, methylation cycle mutations, viruses etc..
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| 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 |
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic