Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I know I've mentioned this so many times already in other posts, but my first LLMD appointment is coming up on March 17.
Since my PCP thinks I have "psychiatric problems" and that I am imagining all these weird things that are happening to me, I am starting to wonder if maybe she isn't right.
My biggest fear is that the LLMD will send my blood to Igenex and there won't be anything wrong with me.
Has this ever happened?
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Relax.
First - you have fired your PCP, right? If you even plan to go back for any reason, forget it.
Call your LLMDs office and ask if there are some Lyme Friendly PCPs in your area whom they could suggest.
As for testing at Igenex, of course, some tests are negative.
But, that is not always indicative of absence of lyme.
The point is that you don't so much want a positive lyme test as to find out what is wrong. If you have symptoms, something is wrong.
It may or may not be lyme, but it could also be other tick-borne - or other chronic stealth infections.
Lyme is the best place to begin with diagnostics.
If you have a ILADS-educated LLMD appointment, that is the first step.
Be certain that your LLMD is ILADS-educated (up on the research, in communication with other ILADS LLMDs, etc.).
Did you find this LLMD through others with lyme? It was not just an ID doctor your PCP pushed you off to?
Just go to the experts, be honest and let them do their job. Diagnosis is a clinical process. Tests may help but they are not the sole tool.
And - did I mention that you won't be going back to your PCP so you don't have to convince anyone. Most PCPs who say things like that would never be convinced - even with positive tests. Believe me.
Call and get a copy of your chart and past labs so that you have your personal record. You don't have to announce you are firing the PCP but you don't have to hire him/her again.
It's best to keep quiet about your LLMD. Take your own copies of past labs rather than have them forwarded.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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, containing MUCH more detailed information.
-===
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.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
First of all, you shouldn't put too much confidence in any Lyme test. They are all inaccurate. According to recent articles there are new strains of LD that are not detectable in any current test.
I would be willing to bet that the majority of people here did not test CDC positive for LD.
When you go to a good LLMD he will diagnose based on clinical evidence, and not what a test says.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Keebler,
Thank you so much for your kind words!
You are so right...it's not at all that I want a Lyme diagnosis. I want to know what is wrong with me.
If I am totally psychotic, I want to hear it from a LLMD.
My PCP doesn't know about my appointment with the LLMD. Actually no one does except my husband and all of you helpful people on Lymenet and ironically enough my therapist who suspects I have Lyme.
I felt totally humiliated today at the PCP's office and your post and references helped calm me quite a bit.
All the best, Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
The overall interpretation of my Igenex western blot was "negative" but look at the bottom of my post for my band results. My results are indicative of lyme...along with my history and symptoms.
I am negative by their established reporting criteria, but that didn't mean I didn't have lyme.
It's very important for you to read the info re: Dr C'a western blot explanation (found at the top of the medical questions board), and also, the western blot info on page 7 of Dr B's paper...link below...
Remember that lyme cannot be included or excluded as a diagnosis based just on a lab test.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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adamm
Unregistered
posted
Igenex while much better than commercial labs, still misses a ton of cases. The only test good enough for use has been patented and withheld from us by the CDC/DOD butchers*, so it's a clinical diagnosis. A good LLMD will know this.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Thank you suthern grl. Clearly my nerves are getting the best of me.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Leelee, I'm with you in saying that if I am psychotic, I want to hear it from an LLMD.
I've been given the run-around by several doctors too, and I'm at the end of my rope.
I told my husband that if this guy says I don't have Lyme, I'm going to either jump off a cliff or blow my head off.
But, yeah, I've wondered the same thing about the tests.
I have a friend who is so skeptical of anyone suspecting they have Lyme after the tests come back negative.
Her husband went off the deep end and left her, and he claims to have Lyme. She says that the doctor he went to had a 100% positive test rate--
everyone he tested, including himself, all his staff, and his family--all had Lyme.
His practice was shut down about a year ago.
She won't tell me the guy's name, or I'd ask about him on here.
So things like that make me question too.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Rememsber the Western Blot is an antibody test.
If your body isn't producing any antibodies to Lyme,
Then they won't show up.
Doesn't mean you don't have it.
Means you could be one sick little puppy
With an immune system totally over run by Lyme bacteria.
May want to try an antibiotic challenge or ask you LLMD about it.
Igenex even recommends this as a way of "priming" your immune system.
May possibly get your more positive or IND bands.
It involves 30 days of antibiotics (doxy usually),
Then go off for ten days and then test.
Or see what your first test says.
My LLMD diagnosis Lyme on symptoms and exclusion.
Positive Lyme specific bands are just an added way of confirming.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
In answer to the question, "does anyone ever test negative @ Igenex"......yes, my husband recently tested negative.
I tested positive; he tested negative. Of course the diagnosis is a clinical determination of which blood test results is only a part. But, he did test negative.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi jam338,
Thanks for answering.
Does your husband have Lyme symptoms?
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes-i did. somewhere in the mix of positives. and including lyme as well as babs and other co-infects
actually...the way you are stressing over this is practically diagnostic
i have been exactly where you are and so hve many others
i hope i am not confusing you. i don't mean to trivalize it.
i went 15 years knowing i had lyme and not being dx. if something reminds me of that time the emotion i feel is crazy. rage-frustration-i just want to scream....
also-the fact that a few of us have had neg tests over the years is a good thing. it negates the criticism of igenix that they always find positives
please listen to the others. and then listen to your llmd. you don't at all need a pos to have it. but looking at the results will help your llmd know the best way to tx you
good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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LeeLee,
In case jam does not come back to anwser, no one ever gets tested for lyme unless they have many of the symptoms.
Back to you, you do realize that many so-called psychiatric symptoms are actually neurological symptoms and that many of those can be caused by all sorts of infections - the toxins from those infections?
Lyme can affect people in a number of ways. Please do yourself a favor and forget the put downs and labels that are dismissive in nature.
Most lyme patients have been dismissed with the same label by their PCP. Many of us have wondered if we were loosing our minds when the medical world had simply turned its back.
Who would've thought? But the evidence is huge. There are many articles about neurological and psychological effects of the lyme toxin.
AND - add to that the human effects to our psyche. I have to spend so much time alone that, even as an adult, I wonder if I've not lost a lot of brain and human action abilities. We have to deal with that, too.
So, If you want to get Singleton's book, read "Cure Unknown" for a better grasp of what can happen and what can help, that might help.
Obviously, you have some very serious symptoms to even be looking for an answer in this area. Whatever is going on, a good LLMD should be able to guide you.
Now, to make things easier, starting from the beginning: do you recall EVER having ANY sort of rash after a tick bite? IF it was a bulls eye, bingo !
Do you recall have any tick attachment?
If so, that is where you start. But, if not, many do not recall.
Next, if you consume even a trace of aspartame/Equal/Nutrasweet - stop now and make note to your doctor of your consumption. It's even in cough drops. Check all labels.
AND any MSG can also be neurotoxic. Google for the various names.
--
If you have a "sleep number bed" ? There have been severe mold problems with some but you don't want to just unzip it.
(Google search: "mold" "Sleep Number" )
---
Do you have on-going mold or chemical exposure? Did you recently buy a brand new car, do you dry clean your clothes, etc.
I'm already assuming you don't smoke or drink any alcohol at this point. Neither will accommodate healing.
-
You can find good self-care and diet advice in Singleton's book and in Burrascano's guidelines.
If you feel ready, you might start a gluten-free diet. More about that in Singleton's book.
Good luck with your preparations.
========
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tickbattler
Unregistered
posted
Hi Leelee,
My 2 year old daugher tested negative through Igenex but had a positive for band 30, which is Lyme-specific. This means she has definitely been exposed to lyme.
If she had no symptoms, I would not be treating her, as it would mean that her body fought it off on her own. But she does have symptoms, so we are treating her.
My 4 year old boy tested negative twice through Igenex (with a positive Lyme specific band 31) but also had symptoms, so we began treatment. 3 months into treatment, we retested him through Clongen labs and he got his first positive Lyme test.
If you have any Lyme speficic bands, even with a negative test, you can at least see exposure to Lyme. That, with symptoms, should be enough for an LLMD to treat you.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi Ipkayak and Keebler,
I do appreciate your responses, and everyone's.
Yes, Keebler, I have had a few tick bites over the years. A couple in my hair that were difficult to get out plus a few others as I live in the country and am outside all the time. Sometimes the ticks get into my house and even in my bed.
About ten years ago one of my dogs got Lymes and was successfully treated.
My LLMD sent me a questionnaire to complete prior to my first visit and it included the printout from the Canadian Lyme Disease Foundation. I have had about 40 of the symptoms off and on. Some severe and scary.
As for the bed, drinking, smoking, chemical exposure, etc., I don't do or have any of those things.
I will try and take your advice about not letting the doctors make me feel badly about myself. Today's event was the coldest, most humiliating experience I can ever remember. After she told me I had psychiatric problems she went on to say that since my blood work looked normal I should be reassured that I am in good health.
I am trying to hold on until March 17.
Thank you so very, very much and everyone else for helping me through this.
I am terrified I may never get an answer or get well.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Lymetoo and Tickbattler, thanks for answering.
I am especially sorry that your little children are affected.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I tested negative on soooo many Lyme tests as well as a bunch of coinfection tests, including a full panel of Igenix tests. But clinically I was practically a textbook case of Lyme (in the beginning, before things got really bad). There are a lot of reasons you can test false negative: - If you catch it "too early" (I got dx and tx within 6 weeks of infection), your body might not have time to make antibodies yet. - If your immune system is functioning so poorly that it doesn't have the "gumption" to make antibodies (probably also true w/me, as I already had immune system illness before tick bite). - If the Lyme microbe is hiding in your cells (it can do this! It's sneaky!), your immune system doesn't realize it's there and doesn't produce antibodies. - If you're already on antibiotics (also true for me for most of my tests), I think because that suppresses the antibodies or something (I forget the exact reason). - and about 6 other reasons I can't think of at the moment.
I wasn't able to get a positive test until I had been off antibiotics several months, and then two or three of my Igenix Lyme tests came back positive (a few came back negative, but you only need one positive one), PLUS my babesia FISH from Igenix was also positive, whereas in the past that had been negative through Igenix as well as other labs.
So, as everyone else has said, a good, brave LLD will diagnose and treat based on clinical evidence. However, even if they feel like they need a positive test to treat, sometimes if you wait a while and test again (especially if you go off antibiotics for a while), the tests will come back positive, whereas before they were negative. Happened to a friend of mine, too.
Try to speak your truth with confidence. I know it's hard, but the more you convey you know what you know, the more likely others are to know you know what you know.
You know? ;-)
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
at a recent support meeting i went to someone said she had been to over 40 docs before one tx her...
that feeling they give you never seems to go away...it hurts so much
i found one of the best things about reading "Cure Unknown" was how it validated what i had been thru...over and over it made me realize it wasn't my fault, i wasn't dumb or crazy and i wasn't the only one.
i get that here too...but there was something about that book that was cathartic
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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tickbattler
Unregistered
posted
lpkayak - Yes, I completely agree about "Cure Unknown"! I remember saying that I felt vindicated after reading it! tickbattler
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posted
I was in your very same shoes in October of last year. I tried to figure out what was wrong with me for years. I decided I didn't have anything to lose by going to see an LLMD and get tested. I was only getting sicker anyways.
By doing so I not only found out that I am CDC positive for Lyme and might have Bartonella and Babesia. But my mom, who has been very sick for many years, has Lyme too. I told her to get tested cause we had similar symptoms. She was told many things, one being Fibromyalgia.
Then I just tested my 2 boys that have been sick. Test results came back last week and they are positive!
Now I don't say any of this to scare you. I am saying this because I was where you are and now only a few months later I found all this out.
I am glad that I found out because now I can help my kids. So they don't have to get as sick as I am or as sick as my mom is.
Good luck at your appointment! Make sure you take a good symptom list. My boys have their 1st appointment that same day.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
Oh by the way! My boys tests are weak positive. But they have many symptoms. They say if you have it for a long time your body could stop producing antibodies. Which is what they look for in the test.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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We all have psych problems too. A few that we are dealing with...anxiety, depression, anger issues, thought we were bi-polar, OCD, Aspergers (a form of autism). I am probably missing some. But a few of us see a therapist and have for years. So that is a big symptom.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I tested Igenex and CDC negative, but with Lyme-specific bands.
My IgM was IND, (one fuzzy band from positive) and I have been sick with classic late-stage Lyme (and possible coinfections) symptoms for many years, with history of multiple known tick bites and exposure to wildlife (camping, hiking, climbing, etc. in many US states and southeastern Canada, for many years, and working with wildlife rehabilitation).
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi nenet,
Gosh, do you have a LLMD that helps you? Do you have abx?
How long ago did you have your Igenex testing done?
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi Leelee,
yes I have a great LLMD, thank goodness. I just got my diagnosis in winter 2007, and have been in antibiotic treatment since spring 2008. I got my first and only Lyme test through Igenex when I saw my first LLMD in winter 2007.
I have been debilitated (house and bed-bound) for 3 years, unable to work since 2000 (cognitive and physical symptoms) and have had Lyme and coinfection symptoms since I was a young child (for most of my life thought they were normal or was too scared to mention them to others/was in denial about them myself).
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Oh nenet, I am so sorry to hear what Lyme has done to you.
You are the first person I have ever heard state that they thought their symptoms were normal and were too afraid to tell anyone.
That is my story also. I am 52, but until about two months ago I kept my agony to myself. I finally told my husband and although he understands and is compassionate, I don't think he really "gets it" as to how mentally draining and disconcerting all the physical and emotional symptoms are.
Looking way back, I suspect I can trace my symptoms to about 1972-ish when I got mono in high school.
Some of the mental things I have experienced are so horrifying and embarrassing that when I was talking to my husband I didn't tell him.
Many years ago I somehow got the courage to "test the waters" with my therapist and admit some abnormal thoughts. I had barely told her anything much when she dismissed me as being anxious. After that, I've never mentioned my mental state to anyone.
I have a wonderful therapist now and although I think she would be helpful and concerned I can't imagine ever having the courage to reveal the darkness again.
Thankfully you have a competent doctor and are getting the medicine that you need and deserve.
I appreciate your telling me what it has been like for you. None of our stories are identical, I suppose, but yours hits close to home with me.
All the best,
Leelee p.s. my first LLMD appointment is next week. If I don't get diagnosed with Lyme I'll probably just lose my mind altogether.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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