Lyme Disease Support Group

Now, I don't actually know what the exact test that was done was, but I'll ask when I have my appointment tomorrow. I did ask how many blood tests there were for Lyme disease and my doctor insisted there was only one (which isn't correct, right?).

The reason I went in to be tested is I'm looking for an answer to the myriad of problems I've been having for about the last 8 years. I've looked into just about everything and up until now haven't been able to find any condition that could adequately explain all of my symptoms.

I just recently started looking into Lyme disease and I couldn't believe how many of my symptoms I was seeing, especially from other personal accounts in this forum.

When it all seemed to start was about 8 years ago or so when I was diagnosed with pericarditis and a mild fever. I stayed in a hospital for a few days and it cleared up with some antibiotics pretty quickly.

About a year after that though, I started having problems with palpitations, chest pain (burning and aching pains that move around), and dizziness. I've been seeing a heart specialist for that and after a series of EKG, stress tests, etc. nothing wrong has been found with my heart.

About a year and a half ago I started having on and off problems with tachycardia. The worst bout lasted a few weeks (I barely slept for those few weeks) and my heart even stopped for a few seconds at one point.

The worst problem I have right now, which I've had for the last couple of years, is complete and total lack of energy. The only time I seem to have any energy is when I drink caffeine, so for a long time I blamed caffeine for making me feel burnt out. However, anytime I quit caffeine, even for months (long after the withdrawal effects are over), I only feel worse.

On really bad days it feels like I am physically drained or I'll feel so tired and weak it's like having a fever but without the temperature. Mainly because of this it has become difficult to function at work or socially. On days I have off all I ever seem to do anymore is go home and either lie motionless in my chair or sleep. I feel like I'm 95 years old and I'm only 26.

Also, If I don't take naps or drink caffeine I'm prone to sleep attacks during certain times of the day. I've seen two sleep specialists and have had several sleep studies all of which came back normal.

Other random problems I've been having are: sore throat on a lot of days, muscle twitching (mostly on my face and arms), migraine like headaches, insomnia, waking up a lot at night, oversleeping, occasional slurred speech, clouded thought, certain sounds make my head feel weird.

I get brain zap like sensations in my head, a few months ago I completely lost my balance while just sitting at a desk and almost hit the desk with my head, tingling sensations in my hands and feet, phantom smells, anxiety attacks.

I had an MRI done, that I could barely afford, for the neurological problems I've been experiencing and it came back normal as well.

So pretty much the point of this post is I want to hear from people who have or have had Lyme disease as to whether or not my problems sound similar. I want to know if I should keep pushing my doctor for more tests or find another one or what.

When I go in tomorrow I'm sure he'll just tell me the usual, what all of my doctors have been telling me: that I'm just depressed or have anxiety and that I should just take anti-depressants and shut up (I did try SSRIs for two years and they only made me feel worse, more apathetic).

The thing is I know my own body well enough to know that it's not all in my head and that I am in fact physically ill. I just don't know what it is that's causing it.

edit: broke up the paragraphs some more

Post edited by: someone123459, at: 05/20/2010 03:42 PM

Which the common labs DO NOT LOOK FOR ALL Lyme Specific Bands...

Also, if you have been ill for 8 years, the likelyhood that you will even test positive is slim to none...

You see one of the big problems, is that in the case of Chronic Lyme - Our bodies typically do not detect the infection - therefore CANNOT produce Antibodies - therefore cannot get a positive test.

Now what you HAVE to point out to your doc - is that the CDC specifically states - that the Western Blot - the one performed by the Common Labs is not 100% accurate - and that LYME is a CLINICAL diagnosis. Also, this particular test is FOR REPORTING PURPOSES ONLY...the CDC does State this - but does not insist that docs abide by it...

So we must MAKE them. Go with your List of symptoms...

If your doc starts to get Stand-offish about it...Remind him that by overlooking the facts - just lets focus on this test...and the fact that Lyme SHOULD NOT be ruled out by blood tests alone - they could be seriously affecting your health. Are they OK with that?

When one has this disease, they have to step up and become their own advocate...you have to educate yourself - which docs tend not to like patients who become smarter then them...OH WELL...

In all honesty hun, you are going to need to see an LLMD - someone who knows what they are doing when it comes to treating this disease...

Tell your doc - the shoe fits here - and you are NOT going to let it pass by, simply because the Mainstream medical community is not willing to open their eyes to this disease...Let him know you are not an idiot - and it does not take a genius to understand that there are some serious flaws with protocols and diagnostic process of the mainstream medical community...

Plus - the men who tell regular docs how to dx and treat this disease - have been investigated - and found guilty of NOT reviewing critical info pertaining to this disease - and the facts that it is NOT easily treated or cured...and they have been making money off of it as well...

How can a person of reasonable intelligence rest their fate in the hands of SO Called experts who REFUSE to acknowledge research that completely contradicts what they profess to be the truth...Let your doc know that you are not willing to lay down and die because of that - and you are going to continue the research and get the answers and find a way to get better...

So he can either obtain the SAME education - one in facts - or he can be like the rest of the sheep...

Christine

~~~Yeah,what Christine said!

~~~And furthermore, post your test results

here and let us have a look-see.See?

```````~~~Mitchell~~~

Look at my profile for my whole story, but I am pretty much the same boat as you! I'm 23 almost 24, and my two blood tests came back "negative"...until i asked for them to print me out the results...i came up positive for the 41 band...once igg and once igm.

They say "negative" but they mean by cdc standards. I had a lyme titer and then asked for a western blot. I found an LLMD here in FL and I have an appt in about two weeks. Then I am asking for the SENSITIVE Igenex test. Multiple people I know show up with few or no bands with normal blood tests but then show multiple bands on Igenex.

People call me grandma...i know the feeling

A year later, I'm still unable to work with neurological symptoms, extreme fatigue, and arthritic pain etc.. So, I just got insurance, when to a Dr, had my labs and mri, and all NEGATIVE! How rediculous. I just don't get it. Now I understand better what everyone here, and everywhere is going through

I do have an appt with an infectious disease Dr, and will be making one with a neurologist tomorrow. Oh, my MRI showed cystic polyps and I have to see an ENT Specialist as well. There are no llmds in nj that take my insurance and I'm a single mom. Can't afford to front that kind of money. Sorry had to vent.

Waxby, glad to see you're back.

I'm not sure the name of the test I had done but I have a copy of the results. All the printout says is that it's for lyme antibodies and that it came back as a value of .45 with normal being anywhere from 0 to .90. I also know that I did not have a western blot done.

I went with what cmany said and told my doctor that I didn't think the test was known to be all that accurate, plus if I'm chronic then my body might have stopped producing antibodies at this point. He insisted it was the oppposite and that the antibodies are only hard to detect very early on. I said that may be true, but it seems pretty likely that they'd also go back down once the first stage of the infection is over. I also asked to see a lyme specialist but he didn't see any point in it. He pretty much said he was willing to talk about it more in 3 months during my next follow up.

Obviously I'm not interested in waiting 3 months to make any progress on this, so I'm ready to just bypass my GP and see an LLMD directly. So if anyone could help me find one near Williamsburg, VA I'd greatly appreciate it.

The following are some links that may be helpful to you:

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the last forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey.

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

print off BUT YOU LOOK GOOD article on page 2 of this post where I broke it up for others to read easier; we neuro lymies!

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/1275535-feeling-guilty-for-being- sick/limitstart/10#1279159

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE!

People seeking doctors might be able to get help from their state online information and support group. The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

example: http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

http://www.lymenet.org/SupportGroups/

This explains the MEDICAL “POLITICS” AROUND LYME and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs, naturopathic doctors:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the- Lyme-War/article/117160/

You should also be evaluated for co-infections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing.

www.igenex.com; http://www.frylabs.com; http://www.clongen.com; http://focusdx.com

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current$ 3 wks. for results!

Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage!

Be sure to download Igenex’s required form IF you haven’t called for Igenex to send you THEIR test kids!

MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he’s ordering the test.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Dr C’s Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

ILADS - 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. www.ilads.org

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc’s SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl’s site 1.10

http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 87840?

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

SUICIDE HOTLINE PHONE NO. & PREVENTION TIPS

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/1275497-national-suicide- prevention-lifeline-tips

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=065801

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL’S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

Betty’s suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also. Click EDIT send when done. 

Go to LOWER BOTTOM; SUBSCRIBE TO THIS DISCUSSION to receive all replies.

Thank you for posting in a manner that makes it easier for all to read and help others.

I was just wondering what things I should be looking for in this guy to make sure he knows what he's doing and will give me the correct treatment.

Should I make sure I get tested for co-infections? If I do have chronic Lyme, do I need to make sure I get I.V. antibiotics as opposed to oral? Do I need to be on antibiotics for more than a month?

I'm almost positive at this point that I have Lyme and that any LLMD will be able to diagnose it based solely on my symptoms. So my biggest fear right now is whether or not I can get treated properly. I don't want to go on antibiotics for three weeks, get cured, only to relapse again a month later.

BTW, my headaches and neurological symptoms seem to be getting worse so I feel like I have to start treatment as soon as possible. I'm also running out of money and, without some sort of treatment, am going to have to turn down the job offer I just got. I am really getting desperate.