You have got to be kiddin me! More of us have Lyme!

Four of us now have been diagnosed with Lyme. 

See my first post in November for my detailed story.  I left a bit of detail out of my first post for brevity reasons.   About the same time I got tested my wife got talked into being tested as well.  About 12 years ago (2000) my wife had bad joint pain, and for whatever reason remembers always feeling better during pregnancy.  A doctor had thought she may have LUPUS, but it was never pursued.  Some tests were run, but nothing conclusive.  About 8 years ago (2002), she got a good case of what appeared to be the flu.  It seems that after that she seemed to never be the same.  Mainly GI issues, insomnia, stomach isues, and mild to severe muscle/joint pain.  Her muscle pain continued to increase.  A Rheumatologist ran a Lyme test in 2004 (Labcorp) it was indeterminate for both the Western Blot and ELISA.   Around 2008, the pain was so bad that she was frequently visiting doctors trying to get an answer.  Another Lyme test was ran in 2008, it was indeterminate as well.    The doctors never had a definitive answer, after running batteries of tests. Finally she was diagnosed with Fibromyalgia in 2010.  Lyme still isn’t a topic, I mean, why would it be Lyme.  So, she decides to do Igenex in 2011, and tests very positive.  Goes to LLMD. Doc thinks she may have Bebesia as well.

So, that is 2 of us with Lyme.  We are like, “What are the odds of that?”

Well, one of my children, starting in 2006, has a grocery list of problems.  There is constantly something wrong with him; Nausea, gall bladder pain, can’t sleep, diarrhea, headaches, hyper emotional, claims he can't read….  Because he is so young, we think he is exaggerating, or just doesn’t want to go to bed, or whatever.  In 2009 we had a Labcorp Lyme test ran. It came back negative.  After the other Lyme results in the family, in 2011 we decide to Lyme test him thru Igenex.  Positive.  Go to LLMD.

So, that is 3 of us with Lyme.  We are like, “What are the odds of that?”

Well, another child, starting in 2008, starts to have weird things.  Swollen glands everywhere, full body rashes, Nausea, constant clogged sinuses.  The gland and rash thing cycles a few months apart, but slowly becomes more frequent.  Many doctor visits later, a Lymphoma scare, Allergy tests, etc…Reluctantly our Pedaitrician agrees to run a Lyme test  (Labcorp).  (After my wife argues with him, this guy has a staunch anti-Lyme stance).  Both the ELISA and Western are positive.  Interestingly, Labcorp now returns the Western Blot bands in there results.  Pediatrician prescribes 30 days of Doxy.  Disagreement over treatment ensues, and finally we tell him we are going to take child to LLMD.  LLMD Doc thinks kid may have Bebesia as well.

So, that is 4 of us with Lyme.  We are like, “How on earth can 4 of us have Lyme”.

I am thinking of testing my other children just for piece-of-mind.  Although they don’t have any symptoms, but are younger.

Using our best guesses, trying to figure out when we actually caught it…Wife and kids did not have any kind of a "Lyme rash", that would correspond to a bite, that we noticed.

Here is the best guess timeline...
Me diagnosed positive for Lyme in 1993 (go on 30 days abx)
(get married)
(moved to a different state)

Wife has symptoms begin in 2000 (maybe)
Kid 1 born
Kid 2 born
(moved to a different state)
Wife has symptoms begin in 2002 (maybe)

Kid 1 symptoms start in 2006

Kid 2 symptoms start in 2008
All diagnosed positive for Lyme in 2011

I don’t know what is more unlikely: That we all caught it separately, or did just me and my wife catch it and she gave it to the kids thru birth/breast milk, or did I give it to my wife, and then she passed it on….

Or, is our staunch anti-Lyme Pediatrician right, that we cant all have Lyme, or at most 30 days of abx is enough, and then none of us have Lyme.  The more we have researched, journal articles I have read, I dont see how anyone can have this viewpoint anymore.  The "pro-ILADS" evidence (for lack of a better term), seems to me to be overly convincing, and continuing to mount.  I have read some of the "pro-IDSA" cited journals articles, they arent that strong of an argument.

(BTW; All  kids and wife have responded very well to the typical ILADS treatment guidelines, through an LLMD)

I will say, that in our experience, 3 out of 4 doctors seem to be open minded about the whole Lyme controversy.  I have been a little surprised with the lack of  detailed knowledge though, among the doctors, especially seeing that I live in an endemic region.  So far no insurance issues, but they would not pay for the Igenex tests.

My Lyme Disease Story

Here is my Lyme story.  I thought my story may help some people, in any way possible. 

I am currently a middle aged male that was always in good shape and good health.  In 1993 I  lived in Maryland.  I was active, and hiked, went to parks, and the usual, but wasn’t a deep woods guy per say.  At this point I had not camped in years.

In summer of 93, I woke up one morning with a red rash on my left hip.  It looked like someone took mostly red and flesh colored paint and almost completely mixed them together, with a swirling motion.  It was irregular shaped and about the size of a quarter.  It reminded me of a fractal.  It was nearly flush with the skin, just barely raised in some spots, uniform in appearance, and had no detectable texture, just felt like skin.  It itched about like poison ivy.  It had a small bump in the middle, like a tiny mosquito bite.  Over the next several days it spread, with the same description as above, it grew to about the size of my hand.  It spread mostly in one direction from the perceived mosquito bite.  Interestingly, the one side seemed to follow the boundary of my underwear, maybe the underwear band decreased flow in surface capillaries.  I also had knee aches and was really tired.  So, I finally go to the doctor, an Internal Medicine doctor.  He looks at it and immediately says “Atypical Lyme”.  He then sends me to a dermatologist for confirmation.  The dermatologist does not think it is Lyme.  Nonetheless, the IM sends my blood away and starts me on 30 days of Doxycycline, and gives me a steroid cream for the itching.   The test comes back positive IgM for Lyme.  I finish my abx, the rash goes away, and I move on with life.  Lyme doesn’t even enter my vocabulary, yet…

Fast forward to 1995-96.  Here is a rough time line of my symptoms that I dealt with…

1995-96:  Start of hives on lower legs.  Come and go.  Itch like poison ivy.  Use steroid cream and oral antihistamines.  I seem to be cold all the time.  Go to Doc, Explained as hives, some people get them, why would it be anything else..

1998-99  Just tired all the time, for me, never feel rested, wake up tired.  Developed motion sickness almost overnight, never had any before.  Go back to same doctor that did Lyme diagnosis (also my primary).  He runs Lyme test again, comes back negative.  To his credit, he tried, he ran a ton of blood work.  Everything was normal.  I  pretty much stay tired from here on…but it isn’t enough to really do anything about….just life… Doc thinks I am just stressed or getting older…Doc wants to try sleep drugs, thinks my something may be off with my sleep.  I decline...

2000-01 Moved to a different state and have all new doctors.  Hives slowly getting worse, more intense, and all over body.  Doctor diagnoses chronic hives.  Allegra works wonders.  ( I mean really works wonders).  Still cycles randomly…Start to have Asthma symptoms..go to allergist, he does tests, yep, Asthma, start daily meds for asthma.  I had increasing sinus issues and ended up having nasal polyps removed.  Diagnosed with Samters's Triad (ie Aspirin Sensitivity Syndrome).  Put on daily nasal steroid.  Start to have tinnitus.

2002-3 Soles of feet hurt.  Don’t go to a doctor, but I think it is just plantar fasciitus.  So, I stretch and it comes and goes.   Daily low level headaches start… …Also, I start to have hints of epididymitis.   

2004-5  Daily headaches get a little worse.  One headache a month that is severe, mega dosage of ibuprofen and coffee seem to keep them at bay.  Start to notice weird heart flip-flopping, go to doc, have EKG, all within normal parameters.  Knees starting to hurt.

2005-6  I have moved now to a different state and have all different doctors.  By know my hives are more regular, can be whole body, are cold induced, pressure induced, and I have dermatographism.  My wife thinks it is funny to write on me…I guess it is good to keep a sense of humor.  But they still cycle.  Severe headaches have driven me to the doctor (1-2 month).  He diagnoses me with migraines and gives me imitrex and some of the typical preventative drugs for the daily headaches and to hopefully stop the migraines.  The imitrex works wonders.  Over the next few years I try several preventative drugs, but none seem to work very well.  Interestingly, cyclobenzaprine does seem to work the best.

2006  Started  to develop what feels like mild gall bladder pains.  Comes and goes, and stays mild.  Never gets painful.  I mention it to a doctor a few times at physicals.  Never painful enough to pursue.  One doctor think I may have permanently pulled a muscle weightlifting.

I almost don’t want to mention this as it is too subjective, but around 2007, it seems like I cant follow complicated movies or books, like I used to, and it seems my short term memory isnt as good as it used to be.

All kind of a blur, but in summary, by 2009…

Knees hurt, I gave up jogging

Hive are terrible, whole body, more consistant, have them more than not , on allegra more than not.  I cant swim (the cold), or any rough housing, as it aggravates the condition.

Daily headaches…

2-4 full blown migraines a month. (even had an MRI by now, and seen 3 docs, including a neuro MD)

Rarely, Split second stabbing muscle pains, that are so intense you almost cry..

Occasional painful Plantar Fasciitus

Mild gall bladder pain
Mild Occasional Nausea.

Mild persistant Asthma. (on daily meds)

Seemed to be more tired than peers…
Heart flip-flops occasionally.  (more than friends I have asked)

Every six months epididimytis so bad I need to see a urologist for meds.  Never completely goes away.

2 surgeries to remove nasal polyps…(also on daily nasal steroid)
1-2 sinus infections a year. (that require abx)
mild motion sickness. 
I am alway cold.  Can be 85 degrees and I have a sweatshirt and jeans on.
Outbreaks of Excema on back of hands, every few months.
Tinnitus in both ears.  (20 db at the upper high freq.  Tech says I have ears of a 65 year old)

If I exert myself, the next day most symptoms are amplified, especially the headaches.

Anybody still reading?

At this point, I am tired of going to Doctors and saying "I just dont feel well every day", and tired of paying.  For the most part they all seemed like they cared, but inevitably I would just get a shoulder shrug, and a "your just getting older".  In 2009 I really started to think that something just wasn’t right. (you think..).  This cant be normal to have this grocery list of problems at my age.  My family is being robbed of my time.  I dont feel good enough or have the physical prowess to really play with my kids, or do a lot of fun things.  I noticed something interesting when I was being treated for epididimytis, which by now has been 3 times.  Because I seemed to not be responding to the meds each time we ended up doing cycles of 2-3 abx’s.  I noticed a significant spike in my hives after about 2 weeks on the abx’s each time. (possible herx).  But I didn’t put it together.  I mean how could I have Lyme….no bullseye rash…etc…

So in 2011, another long story, but a family member, who has been diagnosed with fibromyalgia, on the advice from one of his friends, uses Igenex to get Lyme tested.  Comes back positive.  Goes to a LLMD, and so on…etc…

So he convinces me to do the same, I go to an LLMD and get tested.  I test  positive for Lyme (Igenex), and positive for C.pneumonia, M.pneumonia, and H6, but negative for all other co-infections (thru labcorp).  Igenex IgM positive for band 30, 39, 41, 66, and 83-93, IgG positive for band 41.  Doc thinks I have Bartonella anyway, and that may be most of my problem.  And I most likely never got over it in 93.  (and Doc thinks the rash I had in 1993 was classic Bartonella)

So, in 2011, over a period of a few months,  I start the following daily, as per my Doc…

Ceftin

Azithromycin

Tindamax ( I couldn’t stomach flagyl)

Rifampin

Probiotic
(and monthly blood work, liver, CBC, etc)

3 weeks after the Ceftin, and 1 day after azithromycin,  I had horrible hives, I mean horrible.  Full body, itched like poison ivy.  Some spots were angioedema, raised welts 2 inches in diameter. Every pressure point gave me hives, shoes, walking, underwear, carrying things, etc…Harder blows give me a more "angiodemic" response.  But Allegra (generic) knocked out about 80% of the issue.  Thank God (literally).  The big spike subsides after about 2 weeks.  But for about a month, or two, when the Allegra wears off, my hives are unbearable, my back looks like I have been whipped, I get raised finger like welts with bumps on them.  I end up having another smaller spike after starting Rifampin the next month.  And another small flu-like herx after starting tindamax.  During my first spike My LLMD sent me to go see my allergist. I run the situation by him.  He is vaguely familiar with the so-called Lyme controversy, but seems to be intrigued by my story, agrees that it is most likely a herx, and supports my LLMD’s plan. 

I have discussed the issue with my Urologist and my Primary as well, they both seemed open minded, but both admitted to not being up on it.  We did have a run in with my kids Pediatrician though, we wanted to get him tested.  The Ped doc had the typical staunch anti-Lyme viewpoint, etc.  Finally my wife just told the Doc that she believed he was wrong and its pointlesss to talk about it.  Surprisingly, our Pharmacist seems to be up on the issue and seems to be neutral. 

I am now 6 months into my treatment.  The apparent herxes seem to be gone now.  My symptoms are overall better, some more than others. Except the headaches, which seem a little worse.  I am completely off Asthma meds and my sinus are as clear as ever.  The abx's make me tired though. 

Are the symptoms all Lyme, Bartonella?  Did I never get rid of it in 93?  I guess time will tell…

In month 5-6 I have added Transfer Factor, beta-glucan, NAC, Sarsaparilla, and Cats Claw.  I will probably do these for 3-4 months, except the NAC, which I will continue to do.  (I figure, what can it hurt to try these, some people claim they have helped.  And these seem to be the few that there actually might be decent evidence that they do something???).

I also occasionally take a multivitamin and fish oil pills, but I was already doing that anyway.

I will update again in a couple of months…