Lyme Disease Support Group

Her infection was described as being on a "table over ten years old" since she is infected with 2 bugs whereas recent infections are 4-5 bugs. I'm not entirely sure what that means.

My mother was tested and she is infected.

I've had major depressive disorder and anxiety among other diagnoses over the last 11 years and I am now 24 years old. Over 50 different medications, a few hospital stays, and two extended residential living programs later and I'm still struggling. Combine that with many psychiatrists and psycholgists and psychotherapists working with different approach types and I'm still frustrated. I have back/neck pain, depersonalize on occasion, have horrible sleep (sleep study stated 0% REM sleep, and 1% when using a CPAP), stomach aches, heart palpitations and have had what I can only infer as two mild heart attacks, based on descriptions I read of a heart attack. Both have happened while laying in bed, watching tv--I felt a heaviness on my chest and was unable to breathe for many seconds, then it was like I was permitted to breathe again. I've also had TMJ dysfunction and mild bruxism. My pain tolerance is so high that my TMJ was discounted for years until I saw a specialist and was told after my evaluation and x-rays: "wow...in my 30-plus years of being a TMJ specialist, you're the third case in my career that I've seen this bad", and at the time I was 21 years old and had suffered from TMJ problems since I was 15. I am now 24 and have continued to just deal with it and ignore the pain and inconvenience.

I had a Lyme test done and was told it was "negative" but that no number was given. I was a C-Section baby, but could I still have contracted it from my mother, as my sister most likely did? My understanding of typical test approaches are to look for antibodies, which presumes that your body is producing enough antibodies to be considered positive.

I'm a bit of a hypochondriac because I've tried to figure out the cause of all my problems, so I don't know if I'd be chasing a rogue disease despite the apparent "negative" blood test result. My sister and mother were both "equivocal" and my sister also had a Western Blot test performed. She has seen someone who was trained under the supervision of LDF physicians, and my psychiatrist is the person who ordered my Lyme test and wasn't confident that I had Lyme. I understand that non-LLMDs are skeptical, but I also have some symptoms of hypochondriasis, and my psychiatrist is a well-respected Alzheimer's researcher, devoting half of his career time to Alzheimer's research and his free time seeing treatment-resistant and difficult-to-treat patients. He certainly doesn't want to put me on medication based on the plethora I've already taken, so he's not a pill-pusher in the slightest.

Does anybody have experience in having Lyme their entire life and having difficulty getting it to show up in standard blood tests, because the bug infection is not the same as recent Lyme infections in the past many years? I don't mean to undermind him because of the negative Lyme blood test result, but I'm still skeptical since what I've mentioned (and other things I can't recall at the moment, while in the airport) above fits with the complex Lyme symptoms, and my sister, her doctor, and her acupuncturist all think I have it with more confidence than they had about her and they haven't even spoken with me. Do chronic Lyme Disease sufferers have a high tolerance for pain? Would this be typical if I have had Lyme for all 24 years of my life?

This is a long post, and if any questions are asked of me, I'm sure to follow-up with another long-winded post. I'm just anxious and disappointed about my results, hoping that maybe I could find some relief to my problems and raise my GAF from a 50 up to a more normal 80 or higher. Thanks for reading!

Yes, I have had Lyme for close to 30 years now - and for the first 6 yrs of my 12 yr treatment - I only ever tested borderline positive - ONCE...after that, despite treatment, I am among those who just dont test positive on the WB....and there are many many reasons behind this...

My mother was infected after me - and passed it to my 3 siblings - one of which was also reinfected on her own. All have learning disabilities - including Lyme Induced Autism (brother)...they also have co-infections...

Doesnt matter that you were a c-section - Lyme passes through the placenta - thus - my oldest daughters was tested - but I believe that I still may have passed through breast milk - and suspect passing both co-infections...And I do suspect I have passed to my other 3 girls as well...

EVERYTHING that you have described - can have Lyme at the root cause - and if you are seeing an Alzheimers doc - he will want to learn about Dr McDonalds research on Alzheimers brains - in which he studied 10 of them and 8 were clearly positive with Lyme...there is a lot to it...http://www.molecularalzheimer.org/ - be warned tho - it is a CRAZY site!

With regard to the Hypercondriac stuff...it really is understandable. I was just thinking about this this morning...as i find relying on docs to figure things out - vs my own research knowledge and experience, I am often the one who is correct...non-the-less I was in a festive mood when I had learned by Gall Bladder had to be removed - Yea it wasnt Lyme - until I learned later that the GB is often the most infected of our organs...

What you really need to do - as does your family is get in to see an LLMD...You can PM me your location and how far you can travel and I can help you with this...

In the meantime - make some personal changes...Gluten free - this may be hard - but it can help a great deal...gluten will exadurate pain and increase inflammation - also - in the brain it can do some really funky things - including messing with our opioid receptors - also cut the refined sugars and processed foods...these feed the disease...

Lots of veggies - and moderate fruits....lean meats and half your weight in ounces of water daily...

You will also want to start supplementing to support your immune system and your adrenals...This is VERY important...

As far as a High pain threshold - OH yea - VERY VERY VERY common - and often for us Lifers - pain meds will stop working over time...part of this is due to the fact that pain meds will actually make us more sensitive to minor pains - making them major - thus the need to up the dosing...then there are chemical changes that take place in the brain because of our illness - this comes from the chronic pain and illness - and gluten doesnt help either...

If everything else has been ruled out - then the chances are that Lyme and Co could be the answer - especially if you have family members with it as well...

As for your therapists - Dr Robert Bransfield is a great source...http://www.mentalhealthandillness.com/ he is one of the TOP LL Psychs...

Start making personal changes - and lets get you to a good doc who can help...

PM me for ANYTHING at all...

Christine

Yep, pain medication doesn't seem to help much at all. Aspirin works for my throbbing headaches and since my sister has abnormally thick blood, I'm wondering if the strong blood-thinning properties help my headaches because my blood is abnormally thick as well.

The only LDF doc I've found in Texas was cited for medical malpractice. Dr. H.M...use the search here: http://reg.tmb.state.tx.us/OnLineVerif/Phys_SearchVerif.asp

I've read that LLMDs are often hated on for their treatment approaches...but I'm not sure if people and physicians hate the idea of Lyme and think it doesn't exist or the multi-month and multi-year antibiotic treatments rather than 4-6 week treatments. Is it likely that his "malpractice" is related to LLMD-approved treatment approaches, and he isn't actually a bad physician?

Right now though, I'm in Williamsport, PA until Dec 2, so if there's an LLMD nearby (maybe within a couple hours' driving distance). Is an LLMD = an LDF member, or can a good LLMD not be a member of the LDF? What are the rules for finding an LLMD?

Thanks again...it's nice to not feel so alone in this misunderstood niche of a disease.

(post edit cmany-no posting of docs names please )

Post edited by: cmany, at: 11/19/2009 05:00 AM

But the thing with these docs - is that the IDSA does NOT want there to be such thing as chronic Lyme - neither does ins co's - so they do go after LD docs - with a vengence....they would really prefer to destroy them all - and allow the masses to suffer...

Will get a list out to you today...

Ohh, now I understand...the anger is at chronic Lyme and not at Lyme in general. It's been perplexing me.

Post edited by: waxby, at: 11/21/2009 10:29 PM