Lyme Advocacy Site

Invisible Illness to Visible in on fell swoop!

2011-01-09T02:49:00.000-05:00

January 4, 2011.

Just wanted to wish you all the best for the new year and explain my quietness. On November 15th,on my way to the bathroom, my feet flew out from under me, upending myself, landing fully and heavily upon my back. I spent at least an hour trying to use the bed skirt as something to grasp for an hour or so trying to get myself up, although I had my phone in my pocket but as usual, refused to dial 911, lest there really be nothing wrong. HAH! Eventually, I did get myself up off the floor and clambered onto my bed in great pain.

Finally, I had the necessary CT scans,an MRI and chest and upper spinal X-rays yesterday afternoon and yep, my sacrum is cracked and everyone possible has chastised me for not going to the ER on Thanksgiving. (Seems like I've been in this same situation again before! Will I ever learn? (Doubtful!)

Despite the horrible pain, I would not have been able to manage at all without my wonderful Nursing Aide who was scheduled the next day. However, without her, on her days off I fell apart and finally got myself to my doctors.

As much as we may despise medical procedures, there are obviously times that we should readily allow ourselves to be rolled into that ambulance lest that non-treatment worsens our physical problems.

What I fouund extrememly interestring was that I went from that "invisisible" disease that we all hate, to that other extreme where I was no longer an "invisisiblely" diseased person but a seemingly highly visibly ill person dependent unpon a walker and or a cane.

I've used canes, mobilized scooters, walkers and/or wheelchairs yet still was treated as though I was a malingerer. Now, though I have no visisble "marks" or am using nothing other than a cane, the news of a broken hip has changed folks' impression of my illness from non-serious to something more critical.

I wouldn't wish neither my Lyme nor my broken hip on anyone, but I surely would appreciate the same consideration for both.

(OLD) WOMAN AT RISK

2010-08-25T01:47:00.001-04:00

Image via Wikipedia

I've had few things to write about recently and I've missed that. I've kept myself somewhat active and visible by passing along bits of information that I've hoped folks would find informative and/or interesting as Facebook status updates.

Despite my quietness, a lot of things have been going on with me. As I've mentioned before, my a.c. broke down for good last June. In looking back, it was positively chilly last Summer compared to this year - not only in Florida, but throughout the Northern Hemisphere. For folks who are sick or elderly, high temperatures are dangerous because elderly folks have a harder time in regulating their body temperatures, making heat stroke and heat exhaustion a possibility. With weeks of outside "feels-like" temperatures of over 105 degrees day after day and indoor temperatures over 94, the fans are the only saving grace for me and the dogs.

Also my refrigerator had stopped working last August, and soon after, the brakes in my car quit.

I've been plodding along for these many months, driving with my emergency brake always at the ready (aggravating my compressed L1-S5 fracture and its bilateral sciatica), lugging in 10 pounds of ice every other day or so that I place within a styrofoam cooler inside the freezer portion of my frig, and utilizing the hell out of existing ceiling and new upright fans throughout the house.

I kept this all pretty much close to my chest, mainly out of embarrassment and shame. While I occasionally mentioned some of those problems on Facebook and/or Twitter, my neighbors and offline friends knew little until recently.

I think because I was becoming increasingly tired and depressed with the"routines", I started mentioning it to my closest neighbors, especially after my car finally broke down and I needed to ask for assistance from those neighbors in order to get groceries, etc. Whatever funds I had pieced together to buy a refrigerator this month were spent instead on the $771.00 it took to get my car out of the repairman's "jail." To add to my depression, that repair bill left me with less than $20. for the last 20 days of the month, leaving me begging for food money.

A week ago Friday, a lady knocked on my door and was quite insistent that she enter my home. Since I've been so sick for so long, the place was a mess and having someone from the County demanding access was extremely embarrassing and shameful. Initially, I thought she was here because of my messy house, but it turned out someone had indeed called the Elder Hotline, but because someone felt I was at risk.

Of course, they don't disclose who makes that phone call to the Hotline, but I can certainly guess who it was. If I could speak to that person, I would thank her profusely. I am exceedingly grateful for her making that call that has brought me so much help.

The investigation into my situation began then and it has initiated a flurry of much-needed help for me that would not have happened had I requested them myself (which I had done, wheelchair bound, pre-Lyme diagnosis, around 1999, and was rebuffed in the most patronizing, condescending manner by two county employees who called themselves social workers).

The services which they have now qualified me for include:
1. An aide for an hour each morning to help me get in and out of the shower and assist with whatever personal care as needed.
2. Assistance 3 times a week for an hour for light housekeeping.
3. Assistance for 8 hours to help do a thorough cleaning.
4. Monthly pest control.
5. Meals on Wheels that provide meals for 7 days a week including a hot meal each noon.
6. Of course, my own Social Worker who oversees and directs all.
7. Had I a landline, I would have been supplied the services of Lifeline (LifeAlert?). Since I utilize my cell phone only, I'm instructed to always have it with me.
8. A referral to an a.c. company to actually evaluate the status of my a.c. I don't recall (if I was told) what is going to be done with that information they garner. But I do know that it would be wonderful to get another opinion as to the status of my 21 year old air conditioner, especially one without such a vested interest in it being irreparable.
9. It will be requested that I receive an emergency waiver so that I can be placed on Medicaid as soon as possible. Apparently this will save me money but without the emergency waiver, I'd be placed on a 2 year waiting list before it would go into effect.

Pretty amazing, no? The best is that the first month is free. All services were in place within the first week. If services are provided after that (and it's expected to) the cost to me, based on my income, will be $41.00 month. !!

We read stories about others like me all the time. Those who are struggling to stay independent and in their homes but are clinging desperately to that dream and certainly need help now.
Make that call now to help another old person at risk!.

Advance in Quest for HIV Vaccine

2010-07-10T20:21:00.000-04:00

We owe so much of our knowledge on viral loads, antibodies, CD4. Natural Killer cells and other celluar information we now take for granted from the HIV research done over the years. This article discusses new research that will eventuay aid eveyone.

Advance in Quest for HIV Vaccine: "

By MARK SCHOOFS. HIV research is undergoing a renaissance that could lead to new ways to develop vaccines against the AIDS virus and other viral diseases. In the latest development, U.S. government scientists say they have discovered three powerful antibodies, the strongest of which neutralizes 91% of HIV strains, more than any AIDS antibody yet discovered. They are now deploying the technique used to find those antibodies to identify ...

A Shot in the Light

2010-07-06T16:28:00.000-04:00

Image via Wikipedia

One of the common situations we share is the taking of our blood for lab tests or the placement of IV lines. These instances of fraught with our dread.

We're afraid of the possible pain of the stick itself, the fear of repeated sticks, the fear of "blowing" a vein with its attendant pain as the blood seeps into our tissues, and the possible loss of that vein.

All these issues are absolutely dependent on the skills of the individual performing the "stick."

With full disclosure, I spent most of my career in Intensive Care Units back when the laboratory personnel were seldom called upon for blood draws and where we were responsible for all IV placements. Additionally, I spent the last years of my career as a Home Health IV therapist, as the Supervisor of other IV therapists and then owner of my own Home Heath IV therapy company before my under-treated Fibromyalgia, CFS, and undiagnosed Lyme Disease's symptoms made me realize I had to stop working.

Hopefully your blood drawer has been taught well and has experience. Of course, it's easy to know whether they have the necessary skills by surveying the results.

Did you suffer through repeated attempts? Did you suffer with more pain than necessary? Did a hematoma (bruise) form? Did the person ruin the vein?

While we may not be able to prevent these things from occurring, we do have rights and legitimate expectations. The essential right and expectation is "First, Do No Harm."

If you've ever gone to an established laboratory to have your blood drawn, you can be certain that the individuals there have had a thorough education and earned certifications before they are even allowed to touch you. They then go through an externship where a supervisor oversees their blood draws until the laboratory's standards have been met. These individuals are called Phlebotomists.

(My years of experience mean nothing to such laboratories. Before I could be employed I, too, would have to go to an accredited school and earn my certificates just as though I was fresh out of high school. And I'm gad that they have such standards!)

Compare those laboratories' standards to the possible opposites who are taking your blood in a doctor's office. While you may have the same expectations, you really don't know whether they've been taught in a school setting or whether they just had on-the-job training by someone who may or may not have been qualified. And few have gone through a certification process.

I've found that the office setting is the place most filled with technique errors and therefore the most danger to our veins.

To help us, the following are the techniques involved in a Simple Blood Draw with a Vacutainer.
(From: http://www.phlebotomypages.com/multi_vtainer_system.htm)

Properly identifying the patient by name and date of birth, or medical record number

Assessing the patient and environment before proceeding
  Properly completing the lab requisition slip and labels
  Considering special needs and different approaches for children and the elderly
  Special needs of the psychiatric patient
   Verifying order, and deciding on appropriate collection method
  Assembling proper (safety!) equipment
  Applying tourniquet
  Selecting an appropriate site (palpate the site
  Wearing Personal Protection Equipment and using Universal Precautions
  Properly preparing the site (cleanse the site)
  Performing the skin or venipuncture
  Recognizing and appropriately intervening with complications
  Controlling of bleeding
No fist pumping! Having the patient making a fist and holding it for better vein fill as opposed to pumping the fist. Pumping can increases the potassium release thus elevating K+.
After two unsuccessful sticks no further attempts to draw blood should be made without the patient's consent!

**A patient should be offered the option to return to the office on a different day for another try after two failed attempts of finding the vein.** (How many times has that been offered to you at your doctor's office?)

COMMENT: Smacking any site is completely unnecessary and will cause hemoconcentration of cells (resulting in erroneous and misleading lab results). It
also elevates a patient's white cell count because the body perceives this as an injury!

You can find examples of both good and horribe technique on YouTube, but be careful if you're squimish,
If the technician withdraws from the vein while the vacutainer is still "plugged" in and the tourniquet is still on, your vein will blow. The 3 steps in the exact order are necessary for insuring your vein will continue to be good:
(1)The tourniquet is removed,
(2) then the vacutainer must be "unplugged"
(3) the needle is then removed from your vein.

If these steps aren't followed in that order, that bruise you have may signal that the vein will be lost for months or years.

Starting an IV

The procedures for starting an IV are essentially the same as those for drawing blood. The major difference, of course, is that a catheter is taped in place and that IV tubing is attached (if ordered).

Prepare the tubing by filling it with normal saline and making sure there are no large air-bubbles.

(The most frequent patient question is "How big of an air bubble is dangerous?" I only get worried if the nurse hasn't eliminated the largest air bubbles by running the solution all the way through the tubing first.)

If using off the shelf IVtubing, be sure to clamp it so that the saline doesn’t drip out onto the floor.

Apply a tourniquet high on the upper arm. It should be tight enough to visibly indent the skin without causing patient discomfort.

Once a suitable vein is found, then it is necessary to clean and disinfect the area by swiping it several times with two alcohol wipes.

Use one hand to apply counter tension against the skin. This hand, generally the left hand, will be pulling the skin distally towards the wrist in the opposite direction to the needle will be advancing. When applying counter tension be careful not to compress inflow to the vein which may cause the vein to collapse.

Advance the catheter through the skin over top of the vein or adjacent to the vein. You will know you have "hit" the vein if you see blood in the catheter's plastic applicator. Once you see this "flash" of blood, began advancing the catheter.

Once the catheter is advanced in the vein up to the hub, release the tourniquet. Attach the male end of the Smart Set to the female hub of the angio catheter. Lock the IV tubing to the catheter by advancing and rotating the luer locking mechanism. It requires a clockwise twist to fully lock. At this point, quickly test the IV with a small injection of saline to make sure it is working properly.

Tape the IV in place using three or four strips of tape to prevent accidental removal. Place one or two pieces over the actual skin puncture site. Place additional pieces over loops of tubing so that there is some strain relief.

The important message here is your educating yourself about what is considered normal and what is not.

Never let yourself be a guinea pig without your consent! Do not be afraid of stopping someone who is not using proper technique on your veins.

Results of new Herpes Tests

2010-06-26T02:30:00.002-04:00

Image via Wikipedia

Today saw my giant Dr. D. to learn how high the IgG levels of my Epstein-Barr (EBV) are along with the status of my HHV-6 and Herpes Simplex (HSV).

Looking back, it's been since September that I've been trying to find out this numbers.

First a basic: Do we all understand that like the Lyme or syphilis spirochete, the various Herpes infections can't be eradicated either? Their titers (levels n the blood) can be lowered so that the symptoms are manageable, but they're always percolating in the undergrowth, just waiting for the right impetus to relapse.

That impetus could be any another infection, a surgery, a car accident (all of which qualify as "trauma"), undue stress, poor diet or hydration, etc. Anything that lessens the immune system's ability to function could cause a relapse.

As an example, I was never more ill than after having been the sole caregiver for my Mom and then for my Uncle. I was somewhat relieved for us both after my Mom died in '96 and I've been trying to get back on track since my Uncle went into a Nursing Home in 2002.

I've always cautioned folks to ditch their doctors who don't do what they want but rather than ditch this gentle giant to locate yet another doctor, I've decided to stick it out a bit longer and try to educate him further in his Lyme disease "courses." He shows great promise. We'll see.

Anyway, I reported that the heavy doses of acyclovir (begun in early March) for my Herpes Simplex (HSV) and for my high Epstein-Barr (EBV) titers have been working wonders in that initially, my dead-sore thighs (I don't have any other way of describing that unbearable aching) and my fatigue were dramaticcally lifted. However, it wasn't too long (about two-three weeks) when those improvements eased off.

One could suspect that I had succumbed to a Placebo Effect but I think that's doubtful since I had absolutely no expectations that the acyclovir was going to be helpful. By definition, a Placebo Effect only occurs when the patient believes the medication or treatment is going to work.

(I will set up a new Page with the explanations of the Placebo Effect since it requires some understanding to help us evaluate whether we are experiencing real recovery or the Placebo Effect in ourselves.)

Anyway, about Week Two of the acyclovir, I started noticing a yellowish tinge to my skin and got rather concerned. After all these years of medications, this would not be a good time to suffer liver problems.

I made a "slight" change in how I took the doses daily. Over the years, (unless they were narcotics) when drugs were prescribed two-four times a day, I generally lumped them altogether. With 400mg of acyclovir at fives times a day, it was too much to figure dosage times so I just took them altogether. Not a bright idea with such a large dosage and definitely not recommended! So I swallowed my ego and spread the dosage out during my waking hours as the doctor had intended. It wasn't so hard after all. And my yellowish tinge resolved.

Which brings us to another little problem in our protocols. Doctors who prescribed more than one drug will normally tell us to avoid taking them together everyday. Their understandable rationale is to minimize the stress on our livers and/or kidneys.

Great plan for most meds but since I'm of the notion that if one is trying to kill spirochetes or other bacteria of an infectious nature, taking them regularly minimizes the bugs ability to mutate. And conversely, "pulsing" an antibiotic easily helps the bugs to mutate. (Just one retired RN's opinion.)

Therefore, I'm sticking to my twice a day Biaxin until I feel better, than I switch off to the acyclovir for a week, then back to the Biaxin. Tonight, I restarted the acyclovir since I'm suffering again.

Back to the tests which were taken while on my Biaxin, but not the acyclovir (and lets us not forget the pain and sleep meds).

My HSV remains significantly too high for someone with a chronic relapsing infection, as is my EBV. So we'll continue the med for another two months at least with new labs being drawn mid-July.

The only good news is that my HHV-6 has now been tamped down to non-relapsing levels. First time since around 2002. The question is whether the previous runs of gancyclovir which ended around 2006 was the reason for this or did this run of acyclovir hit it, too? (Supposedly, acyclovir isn't particularly effective for HHV-6.) We'll never know so I'll let that go.

New quick and quality Lyme Test

2010-06-20T13:41:00.000-04:00

Image via Wikipedia

From the June 16th Journal of Clinical and Vaccine Immunology

In the spirit of qualifying for some karma, I wish to thank Lyme Disease News for inspiring me to look this up this abstract.
Instances in bold were added by me for significance. The explanations in italics were also added by me from Wikipedia.

Rapid, simple, quantitative, and highly sensitive antibody detection for lyme disease.

Burbelo PD, Issa AT, Ching KH, Cohen JI, Iadarola MJ, Marques A.

Neurobiology and Pain Therapeutics Section, 49 Convent Drive, Building 49, Room 1C20, NIDCR, NIH, Bethesda, MD 20892-4410, USA. burbelop@nidcr.nih.gov

Abstract
There is currently a need for improved serological tests for the diagnosis and monitoring of Lyme disease, an infection caused by Borrelia burgdorferi. In the present study, we evaluated luciferase (Luciferase is a generic term for the class of oxidative enzymes used in bioluminescence and is distinct from a photoprotein) immunoprecipitation systems (LIPSs) for use for profiling of the antibody responses to a panel of B. burgdorferi proteins for the diagnosis of Lyme disease.

Initially, serum samples from a cohort of patients and controls (n = 46) were used for training and were profiled by the use of 15 different B. burgdorferi antigen (a molecule recognized by the immune system) constructs. For the patient sera, the antibody (antibodies [also known as immunoglobulins, abbreviated Ig] are gamma globulin proteins that are found in blood or other bodily fluids of vertebrates, and are used by the immune system to identify and neutralize foreign objects, such as bacteria and viruses) responses to several B. burgdorferi antigens, including VlsE, flagellin (FlaB), BmpA, DbpA, and DbpB, indicated that the antigens had high levels of immunoreactivity. However, the best diagnostic performance was achieved with a synthetic protein, designated VOVO, consisting of a repeated antigenic peptide sequence, VlsE-OspC-VlsE-OspC,

Analysis of an independent set of serum samples (n = 139) used for validation showed that the VOVO LIPS test had 98% sensitivity (95% confidence interval [CI], 93% to 100%; P < 0.0001) and 100% specificity (95% CI, 94% to 100%; P < 0.0001). Similarly, the C6 peptide enzyme-linked immunosorbent assay (ELISA) also had 98% sensitivity (95% CI, 93% to 100%; P < 0.0001) and 98% specificity (95% CI, 90% to 100%; P < 0.0001).

Receiver operating characteristic analysis revealed that the rates of detection of Lyme disease by the LIPS test and the C6 ELISA were not statistically different. However, the VOVO LIPS test displayed a wide dynamic range of antibody detection spanning over 10,000-fold without the need for serum dilution.

These results suggest that screening by the LIPS test with VOVO and other B. burgdorferi antigens offers an efficient quantitative approach for evaluation of the antibody responses in patients with Lyme disease.
PMID: 20392886 [PubMed - in process]

No word on availability or price as yet.

56 Things I Have Accomplished

2010-06-18T21:32:00.003-04:00

Image by Getty Images via @daylife

What a great idea from PJ, Dominique, and Sue! (Their sites are at the bottom.)

My accomplishments are in bold. (comments in parantheses are my own additions!)

How about you?

1. Started your own blog
2. Slept under the stars (camping in France and Switzerland)
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Gave more than you can afford to charity
7. Been to Disneyland (World counts, right?)
8. Climbed a mountain (not a big one)
9. Held a praying mantis (are they now extinct or something?)
10. Sang a solo
11. Bungee jumped
12. Visited Paris (despite living in Germany for 3 years, irrationally avoided)
13. Watched a lightning storm
14. Taught yourself an art from scratch (Watercolor, beading, gem-setting, playing guitar)
15. Adopted a child (Does it count via CCF?)
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grew your own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train (to Berlin in '65)
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when you’re not ill (ah, remember those days?)
24. Built a snow fort
25. Held a lamb (and raised a goat)
26. Gone skinny dipping (Lake George)
27. Ran a marathon
28. Rode in a gondola in Venice (not as much fun at low tide or in a drought)
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise (7 sweet days around Greece)
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language (German and failed attempts at Spanish, Italian, and French)
37. Had enough money to be truly satisfied (ah, remember those days?)
38. Seen the Leaning Tower of Pisa in person (avoided for some irrational reason)
39. Gone Rock climbing (or was that the mountain?)
40. Seen Michelangelo’s David
41. Sang karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had your portrait painted (though everyone thinks the oil study I own is of me)
48. Gone deep-sea fishing (off both coasts of Florida)
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling (St. Vincent and the Mediterranean)
52. Kissed in the rain (ah, remember those days?)
53. Played in the mud
54. Gone to a drive-in theater (a rite of passage in my youth)
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business (twice)
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone Whale Watching (and saw dolphins)
63. Got flowers for no reason (ah, remember those days?)
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been a passenger on a motorcycle (and owned two of my own)
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car (ah, remember those days?)
83. Walked in Jerusalem
84. Had your picture in the newspaper (And finally digitalized it from '69)
85. Kissed a stranger at midnight on NYE (back before Universal Precautions)
86. Visited the White House
87. Killed and prepared an animal for eating (a deer)
88. Had chickenpox (smallpox, mumps, and measles, one after another one Spring/Summer)
89. Saved someone’s life (doesn't really count since that was my career and was seldom alone for long)
90. Sat on a jury
91. Met someone famous
92. Joined a book club (Remember Book of the Month?)
93. Got a tattoo (back when it was illegal in most states)
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit (do divorces count?)
98. Owned a cell phone (My first one was in my car and the size of a shoe box)
99. Been stung by a bee (and almost died)

(If you have the time and the clear head to actually count my accomplishments and come up with a different number, please know that I've counted them innumerable times and each had different sums. Feel free to correct me!)

Living the CFS Lifehttp://living-the-cfs-life.blogspot.com/2010/06/49-things-ive-accomplished.html

Lyme is Crazyhttp://lymeiscrazy.blogspot.com/2010/06/67-things-i-have-accomplished.html

Learning to Live With CFShttp://livewithcfs.blogspot.com/2010/06/50-things-i-accomplished.html

Palate Cleanser: Cat Massage

2010-06-18T13:20:00.000-04:00

Remember, only your doctor can cure the clap - Boing Boing

2010-06-18T13:17:00.000-04:00

Remember, only your doctor can cure the clap - Boing Boing

The Little Gut That Could

2010-06-06T19:28:00.002-04:00

Leaky Gut Syndrome

Digestive Wellness: How to Strengthen the Immune System and Prevent Disease Through Healthy Digestion (3rd Edition): Completely Revised and Updated Third Edition

Image via Wikipedia

CAUSES
SYMPTOMS
IMPLICATIONS
TREATMENTS

Silly, isn't it? We both know what this post is going to be about. Before you yawn and click away, stay and see if this ia a newer, different viewpoint that could be of help to you.

The gut is the _seat_ of our immune systems. Yep, pun intended.

Have you ever had a cup of tea? Coffee? Glass of wine? Strong alcohol?
Are you allergic to anything?

Ever had an aspirin, an ibuprofen, a Motrin?

Have you ever had steroids? (I don't know many CFS, FM, MS, RA, or Lupus patients who haven't been given a run of steroids by mouth or IV.)

Have you _ever_ had a single run of antibiotics? (I don't know a soul who hasn't.)

Each of those things alone can cause a syndrome called Leaky Gut. Put a few of those things together and we (you) have a mess. Untreated it only worsens our disease and makes us more susceptible to co-infections. (In fact, co-infections _happen_ because our immune systems have been compromised.)

We all know that the intestines are important to us. Do you know _how_ important?

It can cause:
hypochlorhydria (low hydochloric acid in our gastric juices),
candidiasis (yeast infection),
dysbiosis (disruption of our normal system, espcially between levels of good and bad bacteria),
stress,
allergies,
poor diet,
celiac disease,
parasites,

Dr James A Ferrel MD claims "The Leaky Gut Syndrome may be the cause of many 'etiology unknown' illness. LGS may also explain many of the symptoms patients have that confound and confuse many physicians. In my opinion Leaky Gut Syndrome is grossly under considered as a 'mainstream' medicine diagnosis." ()

The lining of the intestines is a barrier that normally only allows properly digested fats, proteins, and starches pass through and enter the bloodstream. It allows substances to pass in several ways.

Chloride, potassium, magnesium, sodium and free fatty acids diffuse through intestinal cells. Amino acids, fatty acids, glucose, minerals, and vitamins also cross through cells, but they do it by another mechanism called active transport.

There's a third way substances can pass through. The spaces in between the cells that line the intestines are normally sealed. These tight junctions are called desmosomes. When the intestinal lining becomes irritated, the junctions loosen and allow unwanted larger molecules in the intestines to pass through into the blood. These unwanted substances are seen by the immune system as foreign (because they aren't normally present in blood). This triggers an antibody reaction ("allergic" reaction).

70% of our immune system is located around the digestive system. In a normal healthy person the small intestine behaves like a selective sieve allowing only the breakdown products of digestion into the bloodstream. Nutrients and well digested fats, proteins and starches are readily able to enter into the bloodstream while large molecules, microbes and toxins are kept out.

The symptoms of Leaky Gut Syndrome are many and varied and include: abdominal pain, heartburn, insomnia, bloating, anxiety, gluten intolerance, malnutrition, muscle cramps and pains, poor exercise tolerance, food allergies.

The theory is that leaky gut syndrome (also called increased intestinal permeability), is the result of damage to the intestinal lining (by those medications, coffee, tea and alcohol among other things listed above) making it less able to protect the internal environment as well as to filter needed nutrients and other biological substances.

As a consequence, some bacteria and their toxins, incompletely digested proteins and fats, and waste not normally absorbed may "leak" out of the intestines into the blood stream. This triggers an allergic reaction , which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities, joint pain, skin rashes, and autoimmunity (where the body attacks its own cells). The cause of this syndrome may be chronic inflammation, food sensitivity, damage from taking large amounts of nonsteroidal anti-inflammatory drugs (NSAIDS), cytotoxic drugs and radiation or certain antibiotics, excessive alcohol consumption, or compromised immunity.

Doctors or other health care practitioners who diagnose this syndrome explain that intestinal inflammation which may originate from intestinal dysbiosis (when the normal microbial colony becomes unbalanced) or other sources of irritation, widens the junctions between the cells of the intestinal lining, allowing endotoxins (any toxin secreted by a micorganism and released into the body when it dies) and incompletely digested particles to be partially absorbed. These are targeted by antibodies, forming immune complexes which cause a semi-infectious state and can be carried by the bloodstream to distant sites where they may stimulate the release of cytokines ("Messenger" cells which help regulate our immune system). Low grade fever, transient gut pain, and a sense of inability to absorb nutrients are some reported symptoms in otherwise undiagnosed patients.

Compromised intestinal barrier function can also cause disease directly, by immunological mechanisms. Increased permeability stimulates classic hypersensitivity responses to foods and to components of the normal gut flora; bacterial endotoxins, cell wall polymers and dietary gluten may cause "non-specific" activation of inflammatory pathways mediated by complement and cytokines. In experimental animals, chronic low-grade endotoxemia causes the appearance of auto-immune disorders.

Leaky Gut Syndromes are clinical disorders associated with increased intestinal permeability. They include

Celiac Disease,
Multiple Sclerosis,
Fibromyalgia,
Autism,
Chronic Fatigue Syndrome,
Irritable Bowel Syndrome,
Eczema,
Dermatitis,
Ulcerative Colitis
inflammatory and infectious bowel diseases [14-19],
chronic inflammatory arthritis,
cryptogenic skin conditions like acne, psoriasis and dermatitis herpetiformis (or Duhring's Disease, is a chronic blistering skin condition, characterised by blisters filled with a watery fluid),
many diseases triggered by food allergy or specific food intolerance, including eczema, urticaria, and irritable bowel syndrome
AIDS,chronic fatigue syndromes [Rigden, Cheney, Lapp, Galland, unpublished results],
chronic hepatitis, chronic pancreatitis,
cystic fibrosis, and pancreatic carcinoma.

CAUSES
Causes of Leaky Gut Syndrome / Intestinal Permeability

Chronic stress

Intestinal infections

Small intestine bacterial overgrowth

Environmental contaminants

Excess alcohol

Poor diet

NSAIDS and other medications

antibiotics we take

antibiotics given to the animals whose meat we eat

antacids, like Zantac, Tagamet, Prilosec, etc.

NSAIDs, like Advil, Tylenol, Excedrin, Motrin, etc.

other prescription and over the counter medications

white sugar

carbonated drinks

antihistamines

chlorinated water

fluoridated water

coffee

Symptoms of Leaky gut syndrome / Intestinal permeability

abdominal pain,

asthma,

chronic joint pain,

chronic muscle pain,

confusion, fuzzy or foggy thinking,

gas, indigestion,

mood swings, nervousness,

poor immunity,

recurrent vaginal infections and thrush,

skin rashes,

diarrhea,

bed-wetting,

recurrent bladder infections,

poor memory,

shortness of breath,

constipation,

bloating,

aggressive behavior,

anxiety,

fatigue,

feeling toxic.

Leaky gut syndrome is associated with the following conditions:

Celiac disease

Crohn's disease

Environmental illness

Hives

Acne

Allergies

Inflammatory joint disease / arthritis

Intestinal infections

Pancreatic insufficiency

Ulcerative colitis

Giardia

Chronic fatigue syndrome

Eczema

Psoriasis

Food allergies and sensitivities

Liver dysfunction

Rheumatoid arthritis

Irritable bowel syndrome

SYMPTOMS

Abdominal pain (chronic)

Insomnia

Bloating

Excessive flatulence

Anaphylactoid reactions

Shortness of breath

Anxiety

Fevers of unknown origin

Gluten intolerance (celiac disease)

Hemorrhoids

Heartburn

Malnutrition

Migraines

Muscle
cramps

Multiple
chemical sensitivities

Muscle
pain

Myofascial
pain

Mood
swings

Poor exercise tolerance

Poor immunity

Constipated? Diarrhea? Irritable Bowel Syndrome? All symptoms of Leaky Gut.
Hyperpermeability may play a primary etiologic role in the evolution of each disease, or may be a secondary consequence of it which causes immune activation, hepatic dysfunction, and pancreatic insufficiency, creating a vicious cycle.

Unless specifically investigated, the role of altered intestinal permeability in patients with Leaky Gut Syndromes often goes unrecognized. The availability of safe, non-invasive, and inexpensive methods for measuring small intestinal permeability make it possible for clinicians to look for the presence of altered intestinal permeability in their patients and to objectively assess the efficacy of treatments. Monitoring the intestinal permeability of chronically ill patients with Leaky Gut Syndromes can help improve clinical outcomes.clinical disorders associated with increased intestinal permeability.

Leaky gut syndrome theories inspired several dietary treatments, including gluten-free diets, casein-free diets, antifungal diets, low-sugar diets, as well as supplements that include nystatin, B12, and probiotics. These treatments are cumbersome and not proven to be efficacious.

Please start taking better care of your gut. Do probiotics or antifungals or both.

I found that by taking care of my gut back in '97, my Multiple Chemical Sensitivities, Irritable Bowel Syndrome, and all my Fibromyalgia tender points were cured very easily and very quickly. I also dropped 60 pounds with little effort.

I can only hope that your efforts provide you with improved quality of life!

Help with Lyme Treatment if you Can

2010-06-06T18:25:00.001-04:00

Zoonosis and Us

2010-06-05T11:57:00.000-04:00

Image via Wikipedia

For those who have been diagnosed with bartonella (an often seen co-infection in Lyme patients), have you been told which type you have? Or are our doctors simply saying "positive" and nothing else?

Cats are the main reservoir for Bartonella henselae, B. clarridgeiae, and B. koehlerae. Dogs can be infected with B. vinsonii subsp. berkhoffii, B. henselae, B. clarridgeiae, B. washoensis, B. elizabethae, and B. quintana.

Traditionally, cats were linked to the zoonosis (transmission to humans from animals) of this bacteria (Cat-scratch fever), but updated research indicates that dogs and other pets should also be considered as possible sources. Additionally, multiple reports of this finding seem to indicate that Bartonella is not only a tick borne but a tick-transmitted pathogen.

Classic cat scratch disease presents as tender and swollen regional lymph nodes, a condition referred to as regional lymphadenopathy. There may be a papule (a small raised area) at the site of initial infection. While some patients have fever and other systemic symptoms, many do not. Other associated complaints include headache, chills, backache and abdominal pain. It may take 7 to 14 days, or as long as two months, before symptoms appear. Most cases are benign and self-limiting, but lymphadenopathy may persist for several months after other symptoms disappear.

The prognosis is generally favorable. In temperate climates, most cases occur in fall and winter. The disease usually resolves spontaneously, with or without treatment, in one month. In immunocompromised patients more severe complications sometimes occur (myocarditis, endocarditis, optic neuritis, etc. (see Wikipedia at http://en.wikipedia.org/wiki/Cat-scratch_Disease)

While Bartonella species are susceptible (vulnerable) to a number of standard antibiotics in vitro (as in a petrie dish) macrolides and tetracycline, for example, the efficacy of antibiotic treatment in immunocompetent (healthy) individuals is uncertain. Immunocompromised (the immune system is not able to fight off diseases) patients should be treated with antibiotics because they are particularly susceptible to systemic (affecting the entire body) disease and bacteremia.

Drugs of particular effectiveness include trimethoprim-sulfamethoxazole (Gantanol), gentamicin, ciprofloxacin (Cipro), and rifampin (Rifadin), B. henselae is generally resistant to penicillin, amoxicillin, and nafcillin.

Although I seem to have no symptoms, since I have both cats and dogs and we just went through a flea infestation, I'm thinking I should be tested.

What do you think? Please leave your comments.

oat:right">

A Little Get to Know Me

2010-05-29T19:11:00.000-04:00

Marilyn Monroe via last.fm

1. WERE YOU NAMED AFTER ANYONE?
The family story is that my first name is the combination of my Mom's and Dad's first names. However, Marilyn Maxwell was very famous when I was born. (Despite years of school yard teasing, I pre-date Marilyn Monroe.) My middle name is from a maternal Great Aunt.

2. WHEN WAS THE LAST TIME YOU CRIED?
About a month ago.

3. DO YOU LIKE YOUR HANDWRITING?
Depends on how sick I am. If I'm "well," my handwriting is a fine example of the cursive writing taught 60 years ago. If I'm having neurological symptoms, even I can barely read it.

4. WHAT IS YOUR FAVORITE LUNCH MEAT?
Roast beef.

5. DO YOU HAVE KIDS?
No

6. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU?
Absolutely! :-)

7. DO YOU USE SARCASM A LOT?
Frequently, if I feel it'll be understood. Frequently I use it inappropriately.

8. DO YOU STILL HAVE YOUR TONSILS?
Nope. No Adenoids or Appendix either.

9. WOULD YOU BUNGEE JUMP?
Yep.

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
Yes, often with difficulty.

12. DO YOU THINK YOU ARE STRONG?
Psychologically I think I'm stronger than most, but, physically, I can barely lift 10 pounds.

13. WHAT IS YOUR FAVORITE ICE CREAM?
Vanilla Bean.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?
Their teeth and smile - whichever comes first.

15. RED OR PINK?
Pink

16. WHAT IS THE WEATHER LIKE OUTSIDE?
Outside, it's 87.8, but feels like 91.2 without any wind and with humidity of 51%. (I get current weather info texted to me three times a day so I'll be prepared when I walk my dogs.) Inside my house, it's 85 with two large fans running in my living area and in my bedroom.

17. WHAT IS YOUR FAVORITE DRINK?
Iced sweet tea made from Plantation Mint. (I drink 3 quarts of it every day for hydration.) I also love my guava and Greek yoghurt smoothie every day to help keep the yeasties under control.

18. WHAT COLOR SHOES ARE YOU WEARING?
White and purple FitFlops.

19. WHAT WAS THE LAST THING YOU ATE?
Naan bread with my morning coffee.

20. WHAT ARE YOU LISTENING TO RIGHT NOW?
"Most Shocking"/"Seniors Gone Wild." (That's embarrassing to admit!)

21. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?
Lime Green

22. FAVORITE SMELLS?
Freshly baked Cinnamon Biscuits. Roasting chicken.

23. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE?
My doctor's recptionist.

24. FAVORITE SPORTS TO WATCH?
None.

27. HAIR COLOR?
Strawberry Blonde.

28. EYE COLOR?
Hazel

29. DO YOU WEAR CONTACTS?
No, just glasses.

30. FAVORITE FOOD?
Pecan cinnamon buns/muffins. Filet mignon. Chateaubriand.

31. SCARY MOVIES OR HAPPY ENDINGS?
Happy endings

32. LAST MOVIE YOU WATCHED?
Chinatown

33. WHAT COLOR SHIRT ARE YOU WEARING?
Blue

34. SUMMER OR WINTER?
Southern winter.

35. HUGS OR KISSES?
Hugs

36. CAR OR TRUCK?
Truck/van

39. WHAT BOOK ARE YOU READING NOW?

I'm not reading anything right now.

40. WHAT IS ON YOUR MOUSE PAD?
Using laptop so no mouse pad.

41. WHAT DID YOU WATCH ON TV LAST NIGHT?
Mitchell & Webb, Peep Show, and Criminal Minds (thanks for DVR.)

42. FAVORITE SOUND?
Gentle rain on tin roof.

43. ROLLING STONES OR BEATLES?
Beatles

44. WHERE DO YOU WANT TO GO TO NEXT?
To the beach

45. DO YOU HAVE A SPECIAL TALENT?

I used to make my own clothes but now I make and sell my own jewelry.Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine

46. WHERE WERE YOU BORN?

In Wilmington (DE) General Hospital.

Thanks to "Living the Lyme Life" for the idea at
http://jmgarnet76.blogspot.com/2010/05/little-get-to-know-me.html

Tracking Ticks via Satellite - NASA Science

2010-05-29T19:06:00.000-04:00

Image via Wikipedia

May 28, 2010: Finding a tick usually involves a squeamish self-examination – carefully rubbing fingertips through the scalp, meticulously scanning the body, and groaning "eyeww" if a little bloodsucker is discovered.

Blacklegged ticks are known as one of the disease transmitting organisms for Lyme disease.

Now, there's a new way to find the pesky, disease-laden critters--via satellite!
University of Alabama at Birmingham graduate students Nathan Renneboog and Stephen Firsing are pioneering the new technique as part of a NASA program called DEVELOP. They've been using satellite images of Alabama's Talladega National Forest to reveal areas of the forest where ticks likely flourish.
Knowing tick whereabouts is important. Ticks can deliver some very unwelcome visitors into your bloodstream: the toxins and organisms that cause Rocky Mountain Spotted Fever, Southern Tick Associated Rash Illness, and Lyme Disease.

"Our goal was to identify high-risk zones for these diseases," explains Renneboog. "We know that ticks prefer moist, heavily vegetated areas, so we wanted to map those areas."

Tracking Ticks via Satellite - NASA Science

An unexpected case of Lyme disease in a soldier se... [Mil Med. 2010] - PubMed result

2010-05-27T20:06:00.000-04:00

An unexpected case of Lyme disease in a soldier se... [Mil Med. 2010] - PubMed result

Proof That Chronic Lyme Disease Exists

2010-05-26T17:27:00.000-04:00

From the journal of "Interdisciplinary Perspectives on Infectious Diseases" Proof That Chronic Lyme Disease Exists

Health Tip: Learn the Signs of Lyme Disease --Doctors Lounge

2010-05-24T17:11:00.000-04:00

Image via Wikipedia

Health Tip: Learn the Signs of Lyme Disease --Doctors Lounge
(HealthDay News) -- Lyme disease is a bacterial illness that's transmitted by the bite of infected ticks.

Not everyone who is infected becomes sick, and not everyone has all symptoms.

But in typical cases, the U.S. National Library of Medicine says, here are common symptoms:

A fever.
Chills.
Feeling lethargic.
Muscle pain and headache.
A bullseye-shaped rash at the site of the bite.
Itching all over the body.
Stiffness in the neck and inflammation of the joints.
Unusual behavior.
Copyright © 2010 HealthDay. All rights reserved.

Trial of Zithromax versus Penicillin G

2010-05-11T12:59:00.000-04:00

The spirochete that causes syphilis is similar to the one that causes Lyme Disease in so many ways that it is imperative to keep track of the research on syphilis.

Because of the multiple overlapping symptoms, following syphilis research is no different than keeping track of the research on Chronic Fatigue Syndrome, Lyme, Lupus, Multiple Sclerosis, and Fibromyalgia. It would be short-sighted and foolish not to do so.

Syphilis remains an important source of illness and its horrible consequences worldwide. Long-acting penicillin is the only therapy currently recommended for syphilis in much of the world. Because of the hesitation in using penicillin for fear of anaphylaxis (an acute multi-system severe type I hypersensitivity reaction), there is a need for an effective, well-tolerated alternative to penicillin for syphilis therapy.

This newly published study from the June 2010 issue of the Journal of Infectious Disease, shows the merits in using azithromycin(Zithromax) 2 Grams orally versus benzathine penicillin G at a dosage of 2.4 million units IM in a one time dose in newly diagnosed syphilis proved to be as effective without the risk of anaphylaxis. The researchers of this study were in, wait for it...: Alabama.

The spectrum of the Tuskegee Experiment with syphilis roused me from my daydream.

However, in this trial, the efficacy of azithromycin at a dosage of 2Grams administered orally was equivalent to that of benzathine penicillin G at 2.4 million units IM for the treatment of early syphilis in persons without HIV infection. At follow-up six months after this one-time dose, serological cure was observed in 180 (77.6%) of 232 azithromycin recipients and 186 (78.5%) of 237 penicillin recipients.

While this was simply peer-reviewed research on using a one-time dose and we are never prescribed such a lone dose, the implications for people with Lyme Disease should be evaluated by your doctor, especially if he/she prefers prescribing penicillin IM.

Now you have a study that may keep you from having to endure deep-muscle injections and the danger of anaphylactic shock. You can now show your doctor proof that azithromycin (Zithromax) may be as effective as Penicillin G IM.

I'm Loaded!

2010-05-11T09:33:00.000-04:00

One would think that a person on a fixed, though paltry income as mine would rank far lower than in the top 10.8% of the world. This is an excellent article that compares whatever income you plug into the annual income box to the rest of the world.

I'm loaded.
It's official.
I'm the 686,812,106 richest person on earth!

How rich are you? >>

An interesting little time waster. Thanks to Google Reader by J. Money at

May is Lyme, CFS, & FM Awareness Month and the CDC's MMWR

2010-05-09T23:49:00.001-04:00

Image via Wikipedia

Almost every day, within the the CDC Mortality and Morbidity Report, the CDC highlights issues important to them. It has long been considered the holy grail for medical professionals to keep up with important infections, trends concerning the spread of flu and hospital pandemics, and deaths from same infections.

I was just catching up on these very dry reports and suddenly realized I was seeing a lot of their identifying the May Awareness Month for various illnesses.

Woven among reports on "Rotovirus Vaccinations Among Infants Aged 5 Months," "Prevalence of Obesity Among Adults >20 Years Old," Recommendations and Reports: Mumps, Measles, Rubella, and Varicella Vaccines: Recommendations of the Advisory Committee on Immunization Practices (ACIP)," "Hepatitis Vaccine Project,"and "CDC Grand Rounds: Current Opportunities in Tobacco Control" was:

Announcements: National Arthritis Month --- May 2010
Announcement: National Drinking Water Week --- May 2--8, 2010
Announcement: National Healthy Vision Month --- May 2010
Announcement: National Hepatitis Awareness Month --- May 2010

Notice anything missing?

For all the noise and energy we have expended over the last two decades in promoting Lyme Disease, Chronic Fatigue Syndrome (CFS), Lupus, Fibromyalgia (FM), and heavens knows how many other illnesses, diseases, and syndromes that have declared May as their Awareness Month, somehow the CDC has chosen to overlook the millions of sufferers in favor of "Healthy Vision" and "Drinking Water."

REALLY?!

Between CFS, FM, and Lyme Disease, I bet there are more disability payments issued for those patients than for all of the other MMWR diseases reported in the entire month of April (in which they didn't recognize any Awarenesses).

Like all of us, the CDC's mishandling of our funds for the years of puny research (when there was some), has angered me. I'll leave the condemnations of the CDC to others who have studied it more and who can write better than me, Like Hillary Johnson at http://oslersweb.com/blog.htm

Co-infections with Herpes and Lyme

2010-05-08T15:08:00.001-04:00

Image via Wikipedia

That's a pretty grim title, isn't it? An ex-husband probably will write me and suggest it's TMI (too much information). And he would be right, but I long ago made a decision to write as I need to and not be bound by his limitations. In case he's forgotten, we're exes.

Did you know that 11% of men and 23% of women in the US have HSV (average 23%)? Neither did I. However, it's estimated that only 2% know that they have it. That's scary! It could be worse. Check Wikipedia to see figures throughout the world.

I was prescribe gancyclovir several months ago, When I finally learned the manufacturer of it, I called the pharmaceutical company to get the straight scoop on why gancyclovir (Cytovene) for my HHV-6 can no longer be obtained. Over the past 4 months, I don't know how many pharmacies I've called trying to find it only to be told that they couldn't get it anymore. "It's on backorder and has been for awhile. We don't know why." At the beginning of my search, when Medco told me they didn't have it, they made the unprecedented offer to cover whatever costs I might incur when I did find it.

The phone answerer said it has too be sent through the FDA for re-approval. She wouldn't or couldn't provide a reason for that. So now I know that the favorite medication for my HHV-6 won't be available and I need to find another anti-viral.

My appointment with my favorite Internal Medicine guy (he with the giant hands) on Monday was great as usual. I read on other blogs that they don't get much "face time" with their doctors and I've been in that unhappy situation many times in the past with many doctors. Dr. D. and I only probably spent 10 minutes together, but we exchanged a lot of information. It's almost as thought we're speaking in short-hand.

I can only liken our meetings as though I was presenting information on a patient to his doctor during Grand Rounds in the morning; something we both have experience doing. He asks the appropriate questions, I provide him with my answers, and I tell him of my needs. This why I always recommend that patients compile a list of symptoms, questions, and any other information they want to provide for the doctor. This is especially important if one's time with the doctor is short and if one has brainfog.

Last month he had ordered the full set of Herpes panel which was drawn within the office. I had a bad feeling when the Medical Assistant couldn't figure out what tubes needed to be utilized, but calmed myself when she simply didn't know that HHV-6 was in the Herpes group. Easy to understand. However she only drew 2 tubes, one for the normal chemical tests and another for Epstein-Barr (EBV), Herpes Simplez (HSV), and HHV-6. The last time I had those same bloods drawn, I remember Quest Lab had drawn 6 tubes.

I knew that I would have positive results for all three Herpes (Herpes never die, they're simply controlled) so I was disappointed when the office didn't call me after a couple of weeks with the results. I did call them asking for the results but they didn't call back. (Don't doctors' offices do that anymore?)

My misgivings about the blood drawer were justified: instead of the HSV IGg and IgM, she only ordered the IgG. That's not too bad. The IgM tests is useful only when the infection is in the the acute stage (brand-new) while the IgG is used when the infection is in the convalescent (chronic) stage. Since I've had the systemic infection since 1982, we didn't need the IgM results.

However, she ordered the IgG for Epstein-Barr (EBV). In it, it was negative. I had to look up this one. Turns out it's only positive in the acute stage and lowers greatly after 3-4 weeks.

But she missed the HHV-6 entirely.

Other than the usual blood tests (which were all normal), I went through being stuck twice (my veins collapsed) just to find out how high my Herpes Simplex was when the real goal was to assess my HHV-6 levels. (HSV normal is, of course, zero and my IgG is 19.2. No question about that!

I also made sure he knew just how fatigued I've been. He's going to chat with a Home Heakth company to see if they can help me with shopping, food preparation, and light housekeeping. It would even be great if someone would cook a hot meal daily, too. I think it's the shopping in a grocery store that almost brings me to my knees (literally). I go for groceries about once a week and I'm knocked back for several days, making it difficult to cook daily. And housework? I feel lucky if I can keep the kitchen surfaces clean and the garbage taken out. This is why I wanted to know my full viral load.

I have an appointment in two weeks for another blood draw and perhaps an answer from a Home Health company. We'll also assess how acyclovir 2 Grams a day is working. (Normal dose for chronic infection is 800mg daily, so I'm taking about three times normal. I''ve never been on such a high dose, do I'm hoping.)

I started the Zovirax (acyclovir's brand name) two days ago. Yesterday I was so sick, I couldn't walk the dogs. In fact, just walking from my chair in the living room six feet to the kitchen was almost too much. It is unusual for me to give in and lay down, but yesterday I took a nap and slept well. My Morphine Sulfate IR didn't help in any way, but the Lyrica I took in the evening did. I also gave in and went to bed early, I was again grateful for my sleep number bed and slept well. Today, I am back to my normal, so the Herheimer-Jarisch (Herx, for short) reaction was short-lived.

Please get tested for all co-infections and get them treated.

Mitchell and Webb: Homeopathy A&E Does this Anger?

2010-05-05T21:07:00.001-04:00

The famous comedy duo, Mitchell and Webb broadcast this skit (on BBC America) recently and poked fun of the hyperbole of homeopathy. Enjoy.
">

Why Would Everybody Want to Know Everything About Everyone Else?

2010-05-04T14:14:00.000-04:00

Image by Ivan Walsh via Flickr

I'm of the generation that grew up in a different time..less techie, less intimate; personal but only with close friends. We had hard-wired landlines. We obtained our information from daily newspapers, weekly magazines and, if one could afford them, a set of Encyclopedia Britannica. Libraries were wonderful but every bit of information in there was, like the Encyclopedia, dated.

The list of media changes over the past 50 years is extensive and easily found by a simple Google search. The only things modern in my life were fashion and computers.

Because of the computer usage in my life, I grasped new tech things with gusto but my goal was mainly accessing medical research. I loved knowing the latest medical research before it was published in medical journals! (Yep, I was often a smart-aleck nurse who one-upped the interns.)

My cousin has had some hesitations with social networking. Today she asked why everybody wants to know everything about everyone else?

I think I know what she means. I was there once.

It has taken a little longer time for me to grow into Facebook, Twitter, and blogging. It wasn't because of Luddite beliefs that kept me away from Facebook and Twitter (since I already had a good medically-oriented website and even a mailing list devoted to Neurontin, a medication that had granted me some relief from pain), but was more secondary to not wanting to open myself up to such intimate incursions into my rather isolated life. Why would anyone want to know so much about me? And even if someone did, they probably wouldn't want 140-word messages from me.

I'm a relatively new Facebook user but after signing up, the sky didn't fall and it took seconds to reconnect with lots of people I'd met over the years that I'd been hadn't been able to find on my own.

Twitter was more difficult for me. After signing up for it, I found it insufferably trivial. It wan't until I connected with lists and people I found interesting did I start the learning curve.

I gave up the daily newspaper about 15 years ago. That's unusual for people of my age. This was not done as an indictment against newspapers but, rather, was because I am disabled and managing the disposal of my trash became controlled by how much I could carry to the dumpster. Daily newspapers soon became just too much weight to carry. So that habit was broken. Like any withdrawal, it was difficult.

News magazines once were beautiful examples of those daily news stories explored in depth. Their weight at disposal again caused problems for me. I weaned myself down to one weekly magazine (New York Magazine) but then finances made me drop them, too.

For years, the only news I got came via TV and I had been happy with that. Occasionally, in between reading medical research from PubMed, I'd peek at the New York Times.

Today I get my daily news from Google Reader. It allows me to keep up with reporters I would never have read as well as explore other blogs.

Between Google Reader and the more immediate Twitter, I'm undoubtedly reading more diverse information in far more depth than I did 40 years ago.

To the question "why does everybody want to know everything about everyone else?"

The answer is: We Want to Know EVERYTHING! Now!

DÉJÀ VU ALL OVER AGAIN

2010-05-01T23:36:00.000-04:00

Image via Wikipedia

DÉJÀ VU ALL OVER AGAIN

The "updated" Infectious Disease Society of America guidelines for Lyme Disease have now been published. The "late stage (chronic) Lyme" folks are very disappointed. Understandably.

Many hoped that the IDSA would recognize the years of anecdotal results that has shown antibiotic treatment has brought us back to varying degrees of life. I wish I could say that any antibiotic treatment in late stage Lyme has cured us all, but, alas, that hasn't happened.

Oh, some have gone back to work (usually part-time). Some have rekindled their marriages and been able to resume child care responsibilities. But most of us remain disabled. Albeit, with antibiotics, better.

Not that anyone knew at the time, a lot of us were misdiagnosed with Chronic Fatigue Syndrome. Many of us grew up on the Internet keeping track of our CFS advocates begging for proper testing, good research, and validation by the CDC and the Social Security Administration to no avail. Instead, there was a lot of dire energy spent on trying to get a decent name and trying to find someone to take our illness seriously so that someone would find the cause of our illness.

Suddenly, we were moved over to the Lyme Disease diagnosis and bumped up against an almost parallel universe! Almost identical issues, different day.

I don't blame the IDSA. I blame my doctor, your doctor, that other guy's doctor. They took our money for the last 10-20 years, never reporting our numbers to the CDC, and never even doing a simple chart review to prove their treatment(s) were working.

So what did the IDSA have to work with? Virtually nothing. A bunch of aging Lymies railing against the lack of adequate tests, adequate research, and too few Lyme-literate MD's to care for us.

We can't expect the IDSA to make something out of nothing. And so we got a public paper that says there isn't any such thing as "Chronic Lyme."

But, BUT, they again recognized "late Lyme arthritis" and "late neurological Lyme." Most of us know that arthritis and neurological symptoms are what we are dealing with and that they took years to be disabling. We suffer with pain in the joints and spine and "brainfog" chronically and we expect everyone to know that. These are the symptoms that bought us to our knees; pulled us out of our careers; destroyed our marriages and partnerships; ruined life-long friendships; isolated us. And depressed us.

For these symptoms, the IDSA, the CDC, and the Social Security Administration recognize that these symptoms are severe and should be treated with antibiotics. We haven't lost entirely.

Here is what I consider the really unfortunate part of their paper: they only recommend 2 to 4 weeks of IV antibiotics or oral antibiotics for these major symptoms. Most of us who have gone back on antibiotics know that such a short time will probably do little. And it's certainly better than nothing.

In their paper on "Post-Lyme Syndromes," the IDSA states all the problems very well. They practically BEG for peer-reviewed research in order to prove what amounts to "chronic Lyme." They very clearly state that the anecdotal testimony and the occasional chart review doesn't prove anything to them.

Besides the lack of placebo controlled peer-reviewed research, they also highlight the problems with long-term antibiotic therapy. The problems with long-term catheter installation cannot be ignored. The infections from those lines the longer they stay in is basic Critical Care knowledge. This is nothing new or unusual. Those lines have always been problematic in the best of ICU's. Having them cared for by Home Health IV therapists increases the problems exponentially. (I know. I used to work in both arenas.) And the large numbers of patients who developed cholecystitis should never have been ignored.

The IDSA has also evoked the "fear of antibiotic tolerance" everywhere they could. It's a somewhat valid argument. Hospitals are in the throes of an antibiotic-resistant epidemic named "MSRA" and it's supposed to be caused by our use of long-term antibiotics. This fear is pummeled into every medical person from day one of their education.

I've seen some arguments against this fear that involves blaming this epidemic on the antibiotics which have been added to our meats and chicken for the past 50 years and I think there is some validity to that. The research points in our being the blame because there's none to counter it. I also blame the continued use of Neosporin for a scratch when washing alone could have handled it. Of course, it's also now an added ingredient on bandages.

In our disappointment with the latest IDSA review of Lyme Disease treatment guidelines, I think we are misplacing our anger. The blame for this under-treatment should be deposited right at our doctors' thresholds.

I can't remember how many times I had asked my previous Lyme guru if he was reporting all of his patients to the CDC, whether he was keeping track of the various treatments, and whether I could help him by doing a chart review to document his treatments. He always said "no." And I was always disappointed. I even called the local county Health Department and found that they only counted new cases that were bitten within the county borders so the 300 newly-diagnosed Lyme patients in our support group were never counted anywhere.

We should now demand our Lyme doctors report us to the CDC and do the overdue basic research. The CDC doesn't care about us? Too bad. Report us anyway. Even they estimate that only about 10% of us are being reported. (I think it's far less.) But how would the CDC and the IDSA know how many there are of us and what treatments are working for us if no one is keeping track?

And the most basic research shouldn't take a full-time employee to maintain after someone catches up the statistics in a practice. I've done chart reviews and if I could do it while I was losing my "mental faculties," anyone can do it. If they need help doing the tabulations, I know there are many volunteers to pick from!

This doesn't have to be research of the caliber that would stand up to peer-review. It just has to be an attempt to prove the need for real research. I'm certain that soon after beginning, grants will be bestowed and publications in journals may follow. If nothing else, it would be a way for "Dr. F." to communicate to a new generation of doctors that Treatment "A" or, "B" plus "D" works.

They spend all that time individualizing our care, pushing themselves, their staff, and us to find the best treatment. We know they're passionate about our care. Wouldn't they like to realize some notoriety for all their efforts? With proper research, the insurance companies will relax and laboratories will invent more specific tests.

Our ranks are full of RN's, LPN's, Nursing Assistants, other doctors, accountants, statisticians, as well as regular, previously hard-working folks - all of whom are begging to see research that reflects their own reality. Yeah, I know it'll mean actually keeping fairly legible, coherent records, but it's doable.

I think it's the least they could do for us..and for themselves.

James Randi's fiery takedown of psychic fraud | Video on TED.com

2010-05-01T06:18:00.000-04:00

James Randi's fiery takedown of psychic fraud | Video on TED.com

Lyme Advocacy Site

Invisible Illness to Visible in on fell swoop!

Related articles

(OLD) WOMAN AT RISK

Related articles by Zemanta

Advance in Quest for HIV Vaccine

A Shot in the Light

Results of new Herpes Tests

Related articles by Zemanta

New quick and quality Lyme Test

Related articles by Zemanta

56 Things I Have Accomplished

Related articles by Zemanta

Palate Cleanser: Cat Massage

Remember, only your doctor can cure the clap - Boing Boing

The Little Gut That Could

Related articles by Zemanta

Help with Lyme Treatment if you Can

Zoonosis and Us

Related articles by Zemanta

A Little Get to Know Me

Related articles by Zemanta

Tracking Ticks via Satellite - NASA Science

Related articles by Zemanta

An unexpected case of Lyme disease in a soldier se... [Mil Med. 2010] - PubMed result

Proof That Chronic Lyme Disease Exists

Health Tip: Learn the Signs of Lyme Disease --Doctors Lounge

Related articles by Zemanta

Trial of Zithromax versus Penicillin G

I'm Loaded!

May is Lyme, CFS, & FM Awareness Month and the CDC's MMWR

Related articles by Zemanta

Co-infections with Herpes and Lyme

Related articles by Zemanta

Mitchell and Webb: Homeopathy A&E Does this Anger?

Why Would Everybody Want to Know Everything About Everyone Else?

Related articles by Zemanta

DÉJÀ VU ALL OVER AGAIN

Related articles by Zemanta

James Randi's fiery takedown of psychic fraud | Video on TED.com