posted
I am so happy to find this site and read some of these stories. My wife has been dealing with a myriad of strange symptoms for the last year and is at her wits end. We live in SF, CA. About a year ago she woke up with terrible vertigo that kept her in bed for the day. It has never gone away. It peaks and valleys. In addtion she's had a list of other things including joint pain in her knee, numbness in her pinky that hasn't gone away, shooting pains in her leg, back pain. The other night her jaw was hurting then went away 12 hours later. She's always tired. She feels like she has a bladder infection, has been treated for it, yet it never really goes away.
Recently a Lyme specialist diagnosed her with Lyme and Babezia. We got a second opinion which subsequently "un-diagnosed" her. The second opinion Dr. is telling us that the lab used by the first Dr, is "famous" for always finding positive lyme results and he is skeptical. His lab performed the same tests, with all coming back negative for Lyme and Babezia. He is strongly urging us to NOT go forward with Lyme treatment, yet does not have an explanation for my wife's symptoms. She's been tested for just about every life-threatening illness(Hotchkins, MS, Cancer, you name it)all test have come back negative.
However her symptoms seem to match Lyme and her story is very similar to the ones I've read on this community. We are very confused and do not know where to go next. We don't know who to believe. I am wondering if anyone has a similar story and could direct my wife and I to another resource. She is growing depressed as time goes on. We are both 39 and have two children and just want to get our life back.
Thank you.
Posts: 1 | From San Francisco, CA | Registered: Jan 2009
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adamm
Unregistered
posted
Your wife likely has Lyme. Unfortunately, corrupt public health official have been misinforming the public about tick-borne diseases for decade, the result being an unrecognized pandemic. I'm assuming you tested through Igenex, a lab well-known for having superior capabilities in the diagnosis of TBDs--if so, I can assure that everything with that lab's on the up and up.
You should check out lymecryme.com and lyme-info.net to learn the truth about what the disease can do, and then find yourself a copy of the book "Cure Unknown" and look for a showing if "Under Our Skin" (http://www.youtube.com/watch?v=WuzPJ_C4Ijs).
BTW--there is anecdotal evidence that Lyme can be passed sexually, and the causative spirochetes have been recovered from all body fluids. Thus, many physicians recomend that the spouses of those infected get tested for thedisease and be on antibiotics if they plan on conceiving. I am greatly sorry to have to tell you all this, but wish both of you the best of luck.
posted
Welcome to the board! The testing can be so unreliable, so I am not surprised you are getting mixed feedback.
Is there any way you can proceed with treatment for Lyme, to see how she responds? I know that many people start to see a difference (good or bad (which can also be a good sign)) pretty early on.
I have a clinical diagnosis from one of the best LLMDs around, whom I absolutely love. But even so, after so many years of mysterious problems, I was sometimes hesitant to believe it. There's just so much controversy out there.
So I can definitely understand. I say go ahead and treat, but that is just my opinion.
Either way, best of luck.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Yes, it sounds as though Lyme treatment is worth pursuing. I am always skeptical of a doctor who dismisses it outright, especially with the symptoms your wife displays.
Most "mainstream" doctors don't believe Igenex is a good lab - but it is. I have been tested through them and my tests are either negative or equivocal, though there is no doubt I have Lyme.
A Lyme-literate doctor knows how to interpret Igenex tests, even if they say negative, and also to diagnose CLINICALLY. This means that any doctor using lab results from any old lab to deny you treatment and validity is just plain ignorant. You will find that these doctors won't even listen to your list of complaints.
Please do try treatment with a Lyme specialist. You may be amazed at how much better your wife can feel. Best wishes!!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sorry to hear about her illness.
Please understand that the lyme blood tests have many, if not most, false negatives. But there are few, if any, false positives.
This has been well-documented in the literature. Pam Weintraub's book, Cure Unknown, describes the problems with the blood test.
The test was designed to be very specific, so if you have a positive result, you can bank on it. However, it was also designed to be highly unsensitive, so it misses many or most of the true lyme cases.
So, you need to understand that the test is very biased in this fashion. That is why lyme specialists use a clinical diagnosis, considering history and symptoms, along with a wide range of tests and physical examination.
Sounds like you have seen a lyme specialist; I hope you and she will listen to the one who diagnosed her properly with lyme and babesia. Her symptoms sound like lyme. In fact, the symptoms of knee and joint pain, fatigue, the jaw pain, etc., sound like classic lyme disease. I had all of those before treatment.
Hang in there! Treatment works though it can be a bumpy ride. Read as much as you can.
Posts: 2557 | From home | Registered: Aug 2006
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bettyg
Unregistered
posted
welcome keith! check your profile for SF llmd names ok! *********************************
if igenex western blot igm/igg were done, please post ONLY POSITIVE NOS. AND INDETERMINED OK; NOT negative nos.
keith, sorry, but i/others have NEURO lyme really bad where we can't comprehend or read long, solid block text like yours. please edit and make paragraphs shorter ok; use guidelines below ... big thanks! xox
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
DebAZ's 12.08 comparison of 05 to 08 new guidelines:
Differences in newest Guidelines compared to 2005 Guidelines
Page 25 26 and 27 Added section "Sorting out the co infections"
Page 28 New info given to get supplements from additional places
In all areas of Supplements there has been various changes and additions to each description and i advice people to re read the full supplement section as well the following additions to the whole supplement section:
Basic Daily Regimin NT Factor Added
Alternative Treatments CITICHOLINE Added
Immune Support Transfor factor Added
For Fatigue Took out "For Fatiuge" section
Other Optional Vitamin D Added
Page 31 "Lyme Disease Rehabilitaion" is rewitten and added to
He mentions Flexcreme (Flex Cream) by Pharmanex as great for body pain
. suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results!
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posted
I'm just echoing what everyone else has said.
1) I was dismissed by numerous specialists as "not sick." Eventually I was labeled with "CFS," which led me to my current LLMD, because he also treats CFS. He dx'ed me with Lyme.
2) Lyme is a clinical diagnosis. Labs are important. But so is your history, symptoms, etc. It was only after two positive lab tests, a low CD57 count, and an antibiotic challenge that I was given an official Lyme diagnosis.
BTW, an antibiotic challenge is when you take abx to see if it provokes the classic "Herx" reaction.
3) "Cure Unknown" is a really fabulous book. I just read it. My husband is reading it. And I bought three copies for family. It is the book I've been waiting for.
4) There are two upcoming screenings of "Under Our Skin" in the Bay Area. One in Rohnert Park and one in Napa. You should definitely see the film. (Website for more info is here: http://underourskin.com/)
5) I would not trust a "regular" doctor to make a Lyme diagnosis. (You'll see why when you read "Cure Unknown.")
If you want a second opinion, visit another LLMD.
6) Check out support groups in your area. They are good resources for finding the appropriate doctor for your needs.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Regarding the lyme experts: were they IDSA or ILADS lyme doctors? The reason I'm asking will be explained in posts below.
And - if you are posting under your real name, you might want to ask the moderators how to make a simple change. For reasons of privacy - and that includes insurance companies doing background checks, etc., it is best to not use a real name that can be traced to you.
There is a great deal to read. An answer may take a while but one thing is clear, your wife needs the most educated doctor she can find. And that excludes most ID doctors who limit themselves to the IDSA approach.
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:
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.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of 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.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If a Lyme specialist had your wife tested via Igenex,
Then he/she used the best lab for testing for tick-borne diseases.
Igenex actually has a higher number of negative tests than positive.
I am 43. I was diagnosed with Lyme at age 41.
I have two young children.
I would suggest that you at least give the Lyme specialist a try.
What other treatment options did the other
Doctor who dismissed the diagnosis offer?
I was diagnosed with Post Traumatic Stress Disorder so many times.
That and Generalized Panic/Anxiety disorder.
If your wife tested positive for Lyme,
Is being seen by a Lyme Literate Medical Doctor,
And wants to get her life back,
Then my best advice to give to you and her is to treat.
Just so you know, Lyme is dismissed by the majority
Of General Health Care Providers especially Infectious Disease docs.
I had my husband and two children tested via Igenex following my diagnosis.
All were positive.
My children have congenital Lyme. They got it from me.
I never saw a tick, never had a rash.
Didn't know I had it during both of my pregnancies.
Just a heads up.
Something you may need to consider if your wife could of had Lyme
During either of her pregnancies.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm 39 and have a 4 year old and a 2 year old.
I went through (am going through)similar things that your wife did with the fatigue, joint pain, jaw pain. Also chest pain, shortness of breath, visual disturbances, etc.
Saw my family doctor, who tested twice (negative both times); a neurologist, a cardiologist, 2 optometrists and an opthamologist, and went to the ER twice.
Everything came back normal, and I was pretty much blown off as a stressed out stay at home mom and told to see a psychiatrist for anti-depressants/anti-anxiety drugs.
But everything they tried me on gave horrible reactions, even Zoloft, which I had taken without a problem after my first son was born. So I said no more.
I'm now scheduled for an appt. with a LLMD in March, so hopefully he'll either test with Igenex or make a clinical diagnosis of Lyme or whatever it is.
I would advise you to follow through with the LLMD treatment, even if just for a while to see if there's any change, either good or bad.
But keep in mind that family doctors are largely very reluctant to think outside the box with Lyme--mine flat out refused to even look at the booklet I brought with me. She said she knows all about Lyme. Yeah.
Good luck! Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Be sure to see the medical articles and on-line library - menu to the left hand side of this page.
The bladder infection that never goes away is pretty classic. Many of us here know what that is like.
You mentioned vertigo as one symptom. That is very common with lyme. Here is a thread with some good information on what can help.
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