posted
I just needed to say what is on my mind to people who will most likely understand.
This is my situation. I have been sick for several years. I often blamed it on stress or my kids. I called my kids "little petri dishes", thinking they were bringing home sicknesses from school.
I have been diagnosed with the following over the past 4 years: Crohn's, Endometriosis, TMJ, CFS, Anxiety/Depression, Rheumatoid Arthritis -actually high Rheumatoid Factor and undetermined joint pain by one rheumatologist, ovarian cysts, fibrocystic breasts.
In May of this year, I finally went to my PCP telling him how miserable I am and that I think something is wrong with me. I was so exhausted that I could barely stay awake. I would sleep several hours and still feel tired and had extremely bad headaches all of the time. He ended up telling me that it was stress and I was probably depressed and that I have migraines.
I walked out of the office with wellbutrin, zoloft, clonopan and Inderal - all of which made me more tired!!!
2 weeks later, I went back for a follow-up. He decided to run more blood work. Amongst the bloodwork was lead, arsenic and the ELISA lyme test.
The test came back on 6/12/10. The ELISA test done by a local lab was 1.55 with greater than 1.20 is positive. My rheuimatoid factor was 59.3 with the reference range of greater than 6.0. My PCP told me to see an infectious disease dr. I called 3 infectious disease doctors that he recommended, they asked why I wanted an appt. I told them that I had an ELISA test for Lyme come back positive and they told me that they were not seeing new patients.
At this point in time, I had heard of Lyme disease and heard of ticks but I did not know ANYTHING. I had a dog that was bit by a tick about 6 years ago and dies and I just thought it was a diseaase for dogs.
I did a lot of research about Lyme and found a Lyme Literate Doctor but I can't see him until the end of August.
In the meantime, I convinced my PCP to run a western blot test. He sent my blood to the local lab and I waited over 2 weeks. I ended up finding out that some how my blood was tainted at the lab and they didnt have my results.
From my research, I found out that Igenex was the lab that really shoudl run the tests for me so th elab that screwed up agreed to pay for the Igenex tests.
My blood was sent to Igenex 2 weeks ago today. I called today and I shoudl have my results on Monday.
I saw my PCP this week becuase I can barely work-I am so sick. He keeps telling me now that I just think I have Lyme disease because the ELISA test was positive. He said I am just having migraines because of teh stress and anxiety of not knowing what is wrong with me.
These are my symptoms that have been coming and going (and getting worse when they come back):
-Tired- can't fall asleep becuase of restlessness in my arms and legs at night. At about 1:00pm in the afternoon, I can barely stay awake. -Painful joints- knees, elbows, fingertips, toes, and ankles. Pain is so bad sometimes that my arms and legs feel weak -Stiff and painful neck -Sore jaw on left side -Night sweats - have to change pj's at night -Loss of appetite- loss 25 pounds so far this year. I am now 5'8" and 116 pounds. People at work have asked if I have cancer -Hair loss -Red burning and crusted eyes -Seeing floaties -Exteme mood swings - I think I am losing my mind -Constant headaches especially when I wake up. I fell like I have a hangover and haven't had anything to drink -Sore throat every morning -Problems emptying bladder -Very Dizzy -Low blood pressure - 90/45 -Ears plugging up and can't hear Pain in chest/ribs by heart -Slight stuttering - my brain and mouth are running at different speeds -No concentration -Bone pain in forearms and shins -Eyelid twitching -Pain in tailbone -Sensation of something crawling up arms and legs -was bit by something while gardening along my woods 4 years ago and had a strange rash but didn't know about ticks and Kyme so I can't confirm it was a tick bite and a bulls eye rash.
My doctor thought it might be a good idea to stay home from work for a couple of weeks until I get teh test sresults back and my stress calms down.
This is my problem. I feel like I have caused so much stress and drama because I have been trying to get this Western Blot test to prove I have Lyme, my doctor's office has been calling everyday following up on the results, my husband has been stressed about it, I missed a lot of work and I had to fill out all of this crazy paperwork at work to go on short term disability (they are ok with this by the way).
I feel like after all of this, my tests will come back negative on Monday and that I caused so much work and stress for people for no reason and I am truely just crazy and my PCP is correct and thinks that it is in my head. I just want to give up - force myself to get up and ignore my pain and just forget all of this Lyme stuff happened!
I understand that Lyme is a clinical diagnosis but Igenex is reliable, right?
Thanks for listening.
Posts: 8 | From Michigan | Registered: Jul 2010
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posted
Yes it is clinical diagnosis....once you realzie that you already know more than your PCP and accept that that's even possible you will see it is very likley you have lYme regardless of what the test says. have of taking on this challenge is getting past the idea that doctors could be less than truthful or truly not be educated....
so mcuh of what you spelled out here points to Lyme ...and if you are unsure we are talking about 2-3 months of abx to prove it out...
your story starts like many on here inlcuding my own...and the crap about stress that you are causing is partially true but your stress response changes and is ultrasenstive for those with Lyme...i am in treatement for 2 years and that is still an issue.
Knowledge is power. keep your chin up..asnwers are coming soon followed by action. be in charge.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said of your PCP: " . . . He keeps telling me now that I just think I have Lyme disease because the ELISA test was positive. He said I am just having migraines because of teh stress and anxiety of not knowing what is wrong with me. . . ."
No need for drama or proclamations, but you may need to fire your doctor. Just get a copy of all your records and don't go back. s. Find a good LLMD.
A positive ELISA and your symptoms speaks volumes.
The Western Blot may or may not be helpful. It cannot rule out lyme if negative and you already have a positive test anyway.
Bottom line: you need to consult with a LLMD.
There are also other tick-borne infections that you should be assessed for - and a LLMD is best to do that in person.
It's a good thing the infectious disease doctors were all busy. They do not treat lyme adequately. Most don't believe in chronic lyme. You need an ILADS-educated Lyme Literate MD.
You said you could get in the end of August. I hope you made that appointment as they get swept up fast. Another week or two will not make too much of a difference as you've been battling this for a long time. Many have to wait months to see a LLMD.
In the meantime, just take really good care of yourself. And keep that appointment. Good luck.
=================
I hope you got both IgG and IgM Western Blots.
Regardless of what the doctor says the test says, you need a copy of the entire test. When he calls with results, ask him to mail you a copy of all the pages.
You should prepare for the test to be negative as the CDC criteria for a positive test is nearly impossible. However, a CDC negative does not mean the test really is negative. Your PCP will not know that, though.
You'd want to look at all the "bands" and read Dr. C's explanation of Western Blot. Link will follow below. -
[ 08-12-2010, 08:41 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
======================
This explains WHY you need an ILADS-educated LLMD or LL ND (naturopathic doctor):
" . . .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.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
[ 08-12-2010, 04:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Here are some guidelines so you know how to take care of yourself.
Be sure to avoid ALL artificial ingredients in foods, gum and even cough drops. Aspartame and MSG can make thing much worse and even a trace needs to be avoided. You can search at Google for all the names they each hide under.
Also be sure to eat lots of leafy green vegetables and avoid all packaged or processed foods. If you need more detail, just ask but, for now, just keep it very healthy and you'll find out more about foods after the initial hit of information can be absorbed.
Please save all these links to your computer file for easy reference. I hope this helps.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=======================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies
Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you've been (mis?)diagnosed with Crohn's, I'm hoping you were instructed to be on a gluten-free diet. A gluten-free diet can help and most LLMDs suggest this for lyme patients.
MAGNESIUM, Turmeric, and Fish Oil are 3 of the top supplements. All of these will help to decrease pain and anxiety from adrenal stress.
You know that anxiety is often from exhaustion, so do be sure to rest and eat well. Gentle movement is good but avoid aerobic exercise for now.
It's vital to avoid even a trace of aspartame or MSG. Google for all the names they hide under. Even a trace will cause anxiety.
Also avoid dyes, processed foods and simple sugars. Whole foods in the most natural state will help nourish your body - and you can season with various garden herbs and sea salt. Extra Virgin Olive Oil is excellent. Unrefined Coconut oil, too.
GINGER Capsules can help reduce some of the dizziness. Dizziness/vertigo is very common with lyme.
Specifically for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 08-12-2010, 04:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, I know all this can be overwhelming. You might want to copy and paste these links to your computer desktop file for easy reference.
You really are on the right path. Take care of yourself. See the LLMD. And know that this can get better. Remember that. It can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
You have lyme. Good you are seeing an LLMD and getting a test. Get away from your PCP. S/he knows nothing about this and you won't get well.
Here are the symptoms you listed. I have marked an X before symptoms I had and Z before ones I still have:
X-Tired- can't fall asleep becuase of restlessness in my arms and legs at night. At about 1:00pm in the afternoon, I can barely stay awake. -Painful joints- knees, elbows, fingertips, toes, and ankles. Pain is so bad sometimes that my arms and legs feel weak X-Stiff and painful neck X-Sore jaw on left side X-Night sweats - have to change pj's at night X-Loss of appetite- loss 25 pounds so far this year. I am now 5'8" and 116 pounds. People at work have asked if I have cancer -Hair loss -Red burning and crusted eyes Z-Seeing floaties X-Exteme mood swings - I think I am losing my mind -Constant headaches especially when I wake up. I fell like I have a hangover and haven't had anything to drink -Sore throat every morning -Problems emptying bladder X-Very Dizzy -Low blood pressure - 90/45 X-Ears plugging up and can't hear Pain in chest/ribs by heart -Slight stuttering - my brain and mouth are running at different speeds X-No concentration -Bone pain in forearms and shins X-Eyelid twitching -Pain in tailbone -Sensation of something crawling up arms and legs -was bit by something while gardening along my woods 4 years ago and had a strange rash but didn't know about ticks and Kyme so I can't confirm it was a tick bite and a bulls eye rash.
Anxiety / depression were major symptoms of mine. The good news is all of that neuro stuff, all of the dizziness, all of my GI issues are GONE.
I'm 4 months into treatment. I only have very mild symptoms left. Mainly mild floaters, mild tinnitus, mild ear stuffiness, mild TMJ, and mild calf twitching. These are most likely Bart related (Bartonella...a co-infection.)
It's good you did your research. Check out www.underourskin.com Rent it. Watch it. Buy it. ALso check out the book, Cure Uknown by Pamela Weintraub.
Keep us posted!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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A positive ELISA means you have LYME. Tell your dr that a positive means it IS POSITIVE. What is it about positive that this "doctor" doesn't understand?????
Your DOCTOR is causing you stress!!!
Go to Seeking A Doctor here and you will be given the names of drs in your area who WANT to help you get well. (unlike that idiot infectious disease dr who "isn't taking new patients.") WHATEVER!!
The anger is directed at the ID dr, not YOU!
MOVING TO MEDICAL QUESTIONS
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
"He keeps telling me now that I just think I have Lyme disease because the ELISA test was positive."
Well, DUH.
All your symptoms are ones that Lyme and coinfections can cause. Shin pain can be from bartonella, and night sweats can be from babesia, so you definitely need an LLMD to help you sort it out and make sure you get the right treatment.
Igenex is the best, but many people with Lyme never test positive, for a wide variety of reasons. The test can only test for the presence of antibodies, which might not be there, or they might be for a different strain of Lyme. It can't tell you if the bacteria itself is there or not.
If the test is positive, and you have Lyme symptoms, then you have Lyme.
If the test is negative, it proves nothing.
"He said I am just having migraines because of teh stress and anxiety of not knowing what is wrong with me."
Wow, he was a big help with figuring out what is wrong with you--NOT.
And stress, migraines and anxiety can all be symptoms caused by Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
This doctor makes you want to laugh and cry at the same time!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Sounds like you have Lyme, Babesia AND Bartonella- based on your symptoms
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Be prepared to feel overwhelmed and bombarded by info! It is a long process to recovery, just remember, your body has been broken down by Lyme, and now you have to supercharge your system to fight it!
You'll be told to take all kinds of supplements, go on diets, and turn your life around 180 degrees! It takes some patience and quite a bit of sifting, but eventually you'll find a regimen that works for you. Don't expect to be able to do it ALL right away...
Luckily this website is here with lots of people willing to support you! If it weren't for this website I would have never gotten a diagnosis, not to mention the moral support!
You're not alone and your not crazy...And you WILL get better. It's a slow process, but continue learning more each day, and STAY positive...staying positive is medicine in itself.
P.S. See if you can get on a waiting list for cancellations at your LLMD. It worked for me, so maybe (fingers-crossed) some people will cancel!
Good Luck, and if you need any support or have any Q's feel free to PM me! I'm new to this, too, but I'd still like to help!
Posts: 71 | From Missouri | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- julier, duplicate posts frequently happen. You can delete duplicate posts by going into edit mode (tiny paper and pencil just right of center over the post. The click the delete box.
Kay-dub, Good advice above from julier. I'll add that it may help to create a file on the computer desktop and copy and past key links for easy reference - and to save for when you have some "study" energy.
It'd be impossible to go through all this all at once, so do pace yourself. If starting to feel overwhelmed, take a break. Information vacations are actually a good thing once you get a basic plan in action and you've seen the LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Still waiting to see teh Lyme Literate Doc on August 30th= my PCP is not even attempting to learn what these tets results and my symptoms mean.
Posts: 8 | From Michigan | Registered: Jul 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
IND usually means Positive to a LLMD. Because if there was nothing there, they would just put Negative.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."----Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I had/have all of your symptoms except two, plus I have more.
I'm glad you are finding a LLMD and are going to see one, that is a good first step.
Most of us do not have PCPs who understand or who are willing to learn.
Good Luck and hope you will get some help with your LLMD appt.
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