I had to write this for a prospective LLMD that I want to make an appt with and I figured I'd share. Any MDs / nurse / other lyme afflicted people feel free to share thoughts.
Chris
Personal Information:
Age: 44 Sex: Male Residence: Lansdale PA (25 miles NW of Philadelphia) Marital Status: Married with 3 kids (13,11,9) Occupation: Financial Services Professional Interests: Running (semi-competitive), Music, Poker
My Story:
In December of 2003, I was with my family at a neighbor's birthday party outside near a bonfire and noticed my face began to feel numb as I sat by the fire.
As I moved away from the fire the numbness went away. I thought it very odd but didn't give it much thought.
In the next couple of days I had a re occurrence of some minor facial numbness and again didn't think much of it. One subsequent day, after drinking a glass of wine, I began to feel spacey and anxious.
I have been a life long social drinker (I'm an 18 year Philadelphia Eagles season ticket holder, avid tailgater and could always hold my liquor) so this was something new for me.
Finally, my face became completely numb at a work meeting and I had a co-worker drive me to the ER as I was unsure if I was having a stroke.
You see about six months prior, I was afflicted with a DVT in my right calf and some *minor* pieces had broken off and traveled to my lungs (pulmonary embolisms). I was on wafarin for the blood clot and was concerned that I was having a stroke. The hospital report checked out fine and I was discharged with ``unexplained parastetia''.
The following weeks my condition worsened and I felt periodically spacey and anxious and the facial numbness and head tingling was now present on a daily basis.
I saw my GP and a neurologist and had CTs and MRIs which all revealed nothing. I also had some lyme tests from Qwest which also came back negative. After doing some internet research, it seemed to me that I had many of the symptoms reported by people with lyme and lyme co-infections. As such, I began to see a lyme literate doctor in West Chester, PA.
That doctor initially put me on Ceftin which didn't completely resolve my symptoms. More lyme tests that all came back non conclusive but the symptoms persisted so my doctor continued to treat based on his clinical diagnosis.
In April of 2004 Bicillin injections were added to the mix and then Tinidazole. In August my liver enzymes were elevated and my doctor advised me to take a couple weeks off until they became decreased.
It was at the end of this two week period where my panic and anxiety symptoms plus insomnia became completely unmanageable. I was/am an avid semi-competitive distance runner (broke 60 minutes in a 10 mile race in May of 2002) and now I felt like my heart was going to explode as I walked up the street with my son.
Shortly after, my IGenex blood tests revealed a positive reading for Bartonella. I was put on Rifampin for the next 6 months.
The panic and anxiety subsided to a much more manageable level on Rifampin but the facial numbness, head butterflies and creepy crawlies persisted.
I was then treated for Babesia even though my Igenex blood work come back negative for that (I did have some air hunger and an occasional cough and wheeze which led my doc to think maybe I had that).
For Babs he had me take Ketek and Mepron (we later added Flagyl). I had to discontinue Ketek when I developed some ear ringing.
From August 2005 through August 2006, I was on an assortment of oral antibiotics that included Biaxin, Minocin and Flagyl. Symptoms persisted.
In late November of 2005, my Igenex Western Blot test revealed positives in the 30, 41 and 58 bands and I still showed a positive reading for Bartonella.
In April 2006, a PICC line was inserted and I received 12 weeks of IV Rocephin while also taking oral antibiotics which included Biaxin, Flagyl and Tindamax. I experienced a couple weeks of severe herxheimer reactions in the middle of this treatment (severe anxiety and panic and increased head and facial tingling and creepy crawlies).
During this time, my doctor had some personal issues which forced him to temporarily close his practice. It was his intention to rotate more IV medicines (I did do a week of Clindomycin and Vancomycin) to target lyme coinfections but he was never able to get around to that.
In August of 2006 the PICC line was removed and I took an anti-biotics holiday. Within a couple weeks it was apparent that I needed to go back on something.
I could feel the anxiety and panic returning and the head symptoms were worsening. I was on Bactrim for about a month before my new doctor decided to treat me again for Babesia (Mepron and Zithormax). We did this for about two months and because this combo wasn't really doing anything we stopped.
I again tried to go off anti-biotics but could not due to my symptoms flaring up again to unmanageable levels. From January of 2007 through March of 2008, I was on a variety of supplements and Minocin. Based on tests my doctor felt that I didn't really need anti-biotics and we tried to ``wean'' me off. This has always failed as the symptoms become problematic pretty quickly.
I was able to keep the symptoms at bay (present but not unmanageable) with 3-4 days of Minocin weekly but could never go off completely.
In March of 2008, I purchased Dr. Singleton's The Lyme Disease Solution and was immediately drawn to the case study in the Bartonella section. It sounded much like my own.
My symptoms mostly paralleled those listed in that section as well (even though my current Bartonella readings had been negative). I convinced my doctor to treat me with Levaquin. Within 3 days of taking levaquin, my herxheimer reactions were severe (weepy, increased symptoms, etc.).
I had to stop for a few days due to a tendon issue (incurred while jogging) and resumed at a lower dose (250 mgs). Since then I have worked back to up 500 mgs and continue to have herxheimer reactions.
Looking back, I recall a bite mark with a bulls eye on my midsection area around 1990 when I lived in Schwenksville, PA which is wooded area.
I can't remember if I dismissed it myself or saw a GP who did. Subsequent to that I had some bouts of anxiety/panic. One was a severe panic attack while driving in my car to meet a friend at a restaurant.
I thought I was having a heart attack as my left side seemed to go numb. An ambulance was called and I spent a few hours in the ER getting checked out. Blood and heart tests were fine. I spent about a week or two breathing into a paper bag before things resolved themselves.
A few years later I recall a few panicky/anxious days that as I look back may have been early manifestations of bart/lyme.
The DVT and pulmonary embolisms produced a great deal of stress and angst for me. I now think that this extra stress brought out the bart/lyme fully as about 6 -7 months later all of my symptoms were presented.
At this point, I feel that my current doctor is mostly taking guidance from me and my own research on my treatment.
Dr. XXXX appears to be one of the most knowledgeable doctors in the field of lyme and tick born illnesses. I feel that my case is complicated enough to want to have an expert treat me and get me back to where I need to be.
I miss being at 100% and the last five years have been extremely rough on me and my family. Thus my rationale for seeking an appointment with Dr. XXXXX.
Antibiotic history
December 2003 - February 2003 - Ceftin February 2004 - Added Bicillan Shots April 2004 - Added Tinidazole July 12 - August 2004 No antibiotics August 11 - Bicillan shots with Tinidazole September 2004 Rifampin April 2005 Ketek/Mepron July 2005 Ketek with Flagyl (alternating weeks) August 2005 Biaxin and Minocin Dec 2005 Biaxin and Flagyl (alternating weeks) April 24, 2006 IV Rochephin May 2006 Added Biaxin and Tinidazole July 2006 Added Zithromax July 20, 2006 IV Clindamycin July 27, 2006 IV Vancomycin Aug 2, 2006 - August 30 - no antibiotics August 30, 2006 Bactrim September 27, 2006 Mepron/Zithromax Dec 9, 2006 = December 18, 2006 no antibiotics Dec 18, 2006 Biaxin Jan 8, 2007 Minocin Mar. 29, 2008 Levaquin
Primary Symtoms
Creepy Crawlies (Cranial nerve palsy?) Facial numbness and tingling Off and on neck stiffness Lymph node swelling Anxiety and panic attacks Irritability Poor sleep (especially difficulty falling asleep) Calf twitching and issues Episodes of breathlessness (part of anxiety?) Acid reflux
[ 15. May 2008, 10:37 AM: Message edited by: mrpotto ]
Posted by fannou (Member # 15406) on :
Im sorry that youve been suffering for so long... In fact, im very suffering, and i have ALL the lyme, bartonella, and babesia symtoms, all. I feel very bad too. Im on a start treatment now, with a wonderful doctor who have lyme too and treat me with a big mix of medications. She want to kill them all at the same time.
I hope u will feel better, actually,i think that your treatment have been changed so many times. And its normal to be worst at the beginning, because these things are dying. But yes, its crazy. Im depressive and suicidal all the time. Bartonella makes crazy, i don't think that it's the medication... Good luck!
xox
Posted by just don (Member # 1129) on :
Sounds as if you have struggled mightly with this!!!
It sounds as IF your on the right track tho,,,sounds as IF the bart is holding you back.
They say the tick soup we encounter is like an onion and needs peeling one layer at a time!!
I think we are ALL complicated cases!!
I would stop jogging and other strenous stuff for a while,,,up your levaquin to max levels, beat the bart and other stuff will be easier.
Bart is considered the number one co and well could be the leading cause of sxs,,,in ALL of us!!
Somebody said everyone has bart,,,I am beginning to believe that statement,,even healthy people HAVE it, just not expressed!!
They SAY bart is extremely easy to get,,,and pass to other family members by mundane things considered routine,,,like sharing nail clippers, drinking glasses etc.
Question of the day,,,does ANY of the rest of your family have bart sxs??? Shin splints,(rough lower leg fronts) are a hallmark sx,,,as well as foot and leg pains!! Restless legs?? Also gastric duress??
Do a search and read for a week or two solid on ALL the bart topics in the history and search areas!!
Always heard treat the bart FIRST!!!
JUST something to THINK about based on dumb observations of --just don--
Posted by Larkspur (Member # 5131) on :
Looks good - very comprehensive...
just curious, is this for the LLMD I recommended to you?
Posted by mrpotto (Member # 15123) on :
Just don.
Thanks for the reply. I don't think my family has bart but who knows? My youngest son does complain of headaches here and there and has had some behavior issues but nothing that seems too unusual.
Chris
Posted by aklnwlf (Member # 5960) on :
Mrpotto,
Thanks for sharing your story.
I also have the same book that you mentioned and it spurred me on to setting up an appt. with an endocrinologist.
I've been in tx since 2004 with very similar results and believe Bart is why I'm not recovering.
After almost 4 years of antibiotics I'm trying other alternative routes and am hoping for more dramatic results.
Course I might still pulse in some antibiotics too.
I think there are alot of us in the same boat. Thank God we can come to this site and others and get some valuable info.
Best of luck to you!
Posted by bettyg (Member # 6147) on :
... chris, thanks for your wonderful, detailed, broken up report; very thorough!
i agree with don; stop your compulsive running to CARE for yourself and deal with the herxs... best wishes chris! Posted by mrpotto (Member # 15123) on :
Thanks don and Betty, I have only run 3 times in the last 6 weeks (around 20 minutes each time). I've been walking some instead. I feel like I always need to keep moving and that the running was doing more good than bad. I intend to continue to slip in short runs 2-3 times a week (tendons permitting) to help flush the lymph system.
This is the least I've run in the 5 years since I've had lyme/bart symptoms so we'll see what effect it will have.
Chris
Posted by just don (Member # 1129) on :
I hear what your saying,,,it IS hard for old habits to die.
My reasoning is it is almost impossible to unring the bell,,,shut the barn door after the horse gets out!!
AFTER an injury is a hard time to find out we should do less
Running is VERY stressful to multiple parts of the body,let alone the tendons.
Walking is MUCH less jarring,,,one of those eliptical training things would be good WHILE you are on abx therapy.
there are ALWAYS alternative ways of conditioning, even swimming is less stressful,,,for NOW!!!
Common theme to all of them,,,dont overdue it!! easier to say than to practice!!
I always heard it takes 21 days to MAKE or BREAK a habit!!! Whether you WANT a new GOOD habit,,or rid of an old unwanted habit,,,its all the same.
You can reassure yourself you can retrain the running habit AFTER this is ALL over!!!
People say running makes them feel so good,,,I guess I have never experienced anything but PAIN from it,,, so not for ME!!!
Good luck on your wellness journey!!says--just don--
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