Struggling with Lyme disease

A personal blog about nightshades, grains, dairy, Lyme Disease… oh my!
Also see my listing of Nightshades

Category Archives: Tick Borne Illnesses (including Lyme disease)

New iSpot Lyme Test

July25

Interesting. A little chatter has been going on in regards to the new iSpot test by Neuroscience for detecting Lyme disease. I don’t know a ton about it, but here are a few tidbits:

- iSpot Lyme test is a “Highly sensitive T Cell-based Lyme ELISpot Assay validated for the diagnosis of Lyme”
- Requires 2 yellow-top tubes of blood
- It has 94% Specificity
- It has 84% Sensitivity
- Turnaround: 5-7 Business days
- Samples run in triplicate.
- It can detect lyme-specific immune response within 7 days. Allow 14 days for the T Cells to develop.
- Approved by FDA in 2011 for tuberculosis
- Uses a Lyme antigen coctail of: DbpA, OspC, VlsE, P100
- Can’t tell if you’re currently infected or if it’s past infection.
- 3 weeks after stopping abx for re-testing to see how many T Cells are there compared to previous test.

YouTube video:
http://youtu.be/kxwNu33zRE8

iSpotLyme at Pharmasan Labs:
http://www.ispotlyme.com/

Neuroscience white paper:
https://www.neurorelief.com/index.php?p=cms&cid=486&pid=149

Yolanda Foster talks about her experience with Lyme

June13

Here’s the snippet about this video on YouTube:

Yolanda Foster, one of the “Real Housewives of Beverly Hills,” brought herself to tears during a moving and powerful speech at Lyme Research Alliance’s (LRA) “Time for Lyme” Gala, as she eloquently recounted how Lyme disease led her to “some of the darkest days of my life.”

It’s actually quite good, so go watch it if you get a chance:  http://youtu.be/6djL18mfXj8

Vaccines can cause infections to come out of hiding

June13

The following article over on SaneVax.org talks about the Gardasil vaccination and the Bartonella infection:  http://sanevax.org/gardasil-and-bartonella-a-dirty-little-secret/

Actually, any vaccination can cause a Lyme or tick-borne infection to suddenly start to multiply and overwhelm a person’s immune system.  If you’ve had an immunization (tetanus, flu shot, etc.) and you’re just not getting better afterward, don’t discount a hidden infection.  I’ve run into many people who have said they had a vaccination and now all of the typical symptoms for Lyme or Bartonella have suddenly started to become apparent.

Video on YouTube with similar symptoms

June13

I stumbled upon this video on YouTube that was made by a person in an attempt to explain their symptoms to others.  Most of these symptoms are my own.  It’s the first time I’ve seen anyone try to describe the same thing I see sometimes when I close my eyes.  When I close my eyes I sometimes get this ebb and flow of light patches, kind of like a dim lava lamp.  I wonder if that has an official medical name?  Anywho… here’s the video:

Lyme Symptoms by rvage on YouTube

Fact or Myth… Dr. Maloney critiques article

May23

An article was written recently that supposedly contained “9 myths about lyme disease”.  That article can be found here:  http://www.huffingtonpost.com/2013/05/20/lyme-disease-myths-facts_n_3287872.html?utm_hp_ref=email_share

Dr. Maloney critiques the article on Facebook, but I’ll include it here so that I can look back on it before it rolls off of the Facebook timeline:

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As a physician who writes accredited evidence-based educational courses and publishes on Lyme, I noted several factual mistakes in this well-meaning article.

1. The 30,000 reported cases are those meeting a rigid surveillance case definition (SDC) developed by public health officials to track disease. Their narrow definition allows them to avoid tracking someone who doesn’t have Lyme. The SCD does not include well-known neurological manifestations of Lyme disease such as encephalopathy. It requires that patients have positive results on antibody testing, with criteria for a “positive test” also being narrowly defined. Although counter-intuitive, reportable cases are not usually reported; somewhere between 2/3 and 11/12 go unreported.

Clinicians care for the sick and therefore use broader disease definitions. They recognize the consequences of missing Lyme disease. While cognizant of the need to avoid “seeing Lyme everywhere” , they know if a diagnostic error is to be made, better to over-diagnose than under-diagnose. Dr. Mead’s 2004 testimony to state officials in CT made that very point. Some clinicians understand that in patients with an exposure history to black-legged ticks, symptoms and findings compatible with Lyme disease and no other likely explanations for their clinical manifestations, it is entirely appropriate to make a clinical diagnosis of Lyme disease and move forward, whether or not testing confirms the infection. Should the diagnosis be incorrect, this will become apparent during follow-up, when the expected antibiotic effect is missing.

2. In areas where Lyme is highly endemic, the infection rate in local tick populations is much higher than Dr. Mead’s suggestion of 1 out of 4 or 5. In popular vacation areas of MN, 2/3 ticks are infected.

3. Although not part of the article, it should be noted that these ticks carry other agents of disease, including Anaplasma, Babesia, Ehrlichia muris-like agents, Borrelia miyamotoi (related to the Lyme bacteria Borrelia burgdorferi) , viruses and probably species of Bartonella bacteria. A single bite can transmit multiple infectious agents and having co-infections complicates diagnosis and treatment.

4. According to 15 years of CDC surveillance data, roughly 70% of case reports noted the presence of an EM rash. A recent study found the likelihood of developing a rash depended on which species and strain of the bacteria caused the infection.
The classic “bull&# 39;s-eye” rash is seen in < 20% of all rashes. Thus, patients with early disease are more likely to have no rash than to have a bull’s-eye.

5. The list of neurologic problems secondary to Lyme is much more extensive than Dr. Mead suggests and is well-documented in the literature.

6. The comments regarding persist disease – lingering or progressive symptoms and findings – seem to minimize the possibility of persistent infection. This is a mistake as persistent infection in humans is well-documented in the literature and several animal studies, using a wide variety of animal species, demonstrated persistent infection is not a fluke occurrence. Interested readers should check out studies by Embers, Barthold and Hodzic.
One of the few studies of late neurologic disease (Logigian E) noted that peripheral nervous system findings in his subjects occurred an average of 16 months post-rash and central nervous system changes were seen 26 months post-rash. These findings were typically accompanied by systemic symptoms like fatigue, sleep disorders, cognitive problems.
Given that direct evidence of the bacteria’ s presence is rarely demonstrated prior to treatment, it is unrealistic to require such proof post-therapy in order to conclude that persistent disease is due to persistent infection. As an epidemiologist and not a clinician, Dr. Mead may not realize that his broken bone analogy is flawed. In some fractures, failure to heal (known as non-union), is quite common.
Which isn’t to say that there aren’t other potential mechanisms but certainly none have been as well demonstrated as persistent infection.

7. Dr. Mead’s comments about treating persistent symptoms represent the conventional medical wisdom but he should know better. Last fall two separate papers, including one by Allison Delong that I co-authored, carefully reviewed the 4 NIH-sponsored trials and demonstrated that in 2 trials, IV antibiotic re-treatment resulted in clinically meaningful improvements in patients with severe fatigue. Unfortunately, the risk of adverse events was significant. But patients with disabling fatigue like that seen in these 2 studies, may determine that the potential benefits justified the risk. Hopefully new research will identify other patient subgroups that would also benefit from antibiotic re-treatment as well as antibiotic protocols that are equally, or more, effective and less likely to cause problems. That won’t happen if members of the CDC’s Lyme program have already given up on this line of therapy.

8. Testing is not reliable and definitely cannot rule out disease. Common blood tests look for antibodies that can take weeks for the body to produce, which is why testing during the rash phase is discouraged.

Once produced, levels do not necessarily remain high in people who are infected. The bacteria are a zoonotic pathogen, able to survive in multiple animal species – ticks, lizards, mammals and birds. To do this it must be able to adapt to these different hosts, including the host’s immune response. Thus, it has developed ways to evade the immune system and after a time antibody production decreases because the body isn’t “seeing” the bacteria. In a 1999 study by Logigian, where subjects absolutely had to have evidence of Lyme to be included, 17% lacked positive serology. In Embers 2012 monkey trial, antibody levels as measured by the C6 ELISA, declined after treatment even though the animals had evidence of persistent infection on autopsy. Even more interesting is the fact that 50%of the untreated animals also had their antibody levels drop back to normal as time went by. This has real implications for patients with late neurologic disease because they often experience diagnostic delays of several years and with the passage of time they are even less like to be diagnosed if it requires a positive blood test.

9. There is one well documented route of human to human transmission – in utero.

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A lot of discussion is going on right now between doctors and researchers.  It will be interesting to see how it all pans out in the end!

May has been Lyme Disease Awareness Month

May23

If you haven’t noticed already, May has been Lyme Disease Awareness Month.  Wish I had the energy, and lack of anxiety, to go out and join some of my Lyme friends.

Red freckle or mole like things

March15

Recently people have been chatting about finding small spots on their skin that look like little red freckles or moles.  I have them, too, so I thought I’d show a picture of what they look like.  I kept my fingers in the picture so you could tell how big these are.  I have a few that are more like mole size (a bit bigger than a freckle and raised up).

I’ve had a doctor say they aren’t anything to consider being problematic.  I’ve heard others say this is a Babesia thing and yet others who have said it’s a Bartonella thing.  Gah!  I hate all of the guessing we all have to do.

Walking or flash mob for Lyme? Yeah, good luck with that.

March11

Who in the world thinks “walk for Lyme” or “Flash Mob” is a good idea for a Lyme fundraiser?? Unless we have someone pushing us in wheelchairs, that’s not gonna happen.

The anxiety keeps us out of groups and from being around other people.  Most of us lost a lot of our friendships as well over the years, so our support groups are very small.

And the flash mob?  There would be no flash… it would be more like this:

- “I just got here, let me rest”
- “Okay, I’m working off my jacket to show my Lyme t-shirt”
- “hang on, almost there”
- “okay, done”
- “no, wait for me, I’m not quite ready yet!”

Just send me a link and I’ll donate.  lol

I don’t mean to say it wouldn’t work, but I don’t see it as something a person who actually has Lyme/TBI would be able to participate in very well.  Although, I don’t have any alternatives to suggest.  So, a small event is better than nothing  :-)

Gathering people with Lyme disease together is impossible… lol

March11

The face-to-face gather of my local Lyme Disease support group that I belong to has kind of fizzled out a bit and here’s why:

- The location (local library) keeps moving our day/time around.  Most of us are too addled to call every month to find out when it is.

- It would make sense to have one person call every week and notify the group.  Unfortunately, our symptoms flare up completely randomly and that person may completely go out of communication at any time.

- We’re too addled to come up with an alternative location that would be best for everyone in the group.

- We’re too full of anxiety over little things like whether there’s parking space? Will I have to parallel park?  Is it a scary neighborhood?  Things like that.

- We’re too fatigued so… how big is the parking lot because we can’t walk for long.

Our email message group is going well, though.  It’s too bad we can’t figure this out.  :-P

Dr. Edward Breitschwerdt discusses recent Bartonella research

March11

Bartonella is a kind of bacteria that can be transmitted via various entities.  In this radio interview, Dr. Edward Breitschwerdt reveals that Bartonella can be transmitted via ticks, head lice, fleas, and biting flies.  You might want to skip past the first couple of minutes because it’s just the radio host reading off credits and such.

http://radioinvivo.org/2013/03/06/bartonella-the-hidden-epidemic/

He also talks about how the segregation of veterinary medicine from traditional medicine has been counter productive especially when it comes to diseases like these where shared knowledge would be helpful.

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