Short History

This blog is a great place to read about things, but if you want discussion, you may want to consider joining one of the many state-by-state mailing lists (depending on your location ([StateLyme]@yahoogroups.com, e.g., PennsylvaniaLyme@yahoogroups.com)). If you’re from the Pittsburgh area, you can join a Yahoo Groups mailing list called PittsburghLyme@yahoogroups.com, and you may also want to join PennsylvaniaLyme@yahoogroups.com

As time passes this gets longer … read the stuff in bold if you want the really short version. Also, I will begin with a brief visual summary of my experience.

This graphs the number of symptoms per day since August 2008

This graphs the number of symptoms per day since August 2008

This shows the frequency of symptoms in number of days (y axis) per month (X axis)

This shows the frequency of symptoms in number of days (y axis) per month (X axis)

10/4/06 My dog came down with acute lyme paralysis. I may have been bitten at the same time. I have a vague memory (only remembered this in 2008) that I saw a tick walking down my leg in my bathroom and (not knowing much about the lifecycle) thought relievedly that it wasn’t full of blood and therefore had nto bit me, but no memory of erythra migrans or concrete or dated memory of a tick bite.

12/7/06 First recorded symptoms — severe fatigue; hair falling out; post-nasal drip; sore throat; swollen lymph nodes (which have continued to this day). Fatigue was especially severe for about 3 months, requiring daily naps and frequent early bed times. Doctors tested for pneumonia and mono and found nothing. Told me I probably had a virus and it would go away. However, for all of 2007 I had cold or flu symptoms every two weeks

3/07 We discovered a terrible mold problem next to my bedroom. A leak behind the wall had built this up over many months if not years.

Spring/Summer: By early april, I had neck pain and stiffness. I also had a relapse of my fatigue at the start of april, and again at the end of May. Starting in June my jaw began to stiffen up (this symptom went up and down in severity). I also developed an unexplained rash on the back of my neck for a few weeks (see below).

Rash

Early Fall 2007: New symptoms began to arise in the fall, partly precipitated by my working very hard (5 hrs sleep a night for a week) for a major paper deadline at work. First, I had three adverse events — a relapse of my fatigue; a five day period in which my jaw froze up and could not be opened, a five day period in which my neck froze up and I could not turn my head; and a period of almost 5 days in which I had shooting pains in my left shoulder that made it almost impossible to use that arm. All of my previous symptoms continued and I developed the following new symptoms: partial loss of hearing; anxiety; night sweats; increasingly severe back pain; aching in my lymph nodes. Doctors still don’t think I have anything to be worried about (virus; too little sleep offered as explanations). I insist on bloodwork and other tests.

October/November 2007: My massage therapist suggested I might have lyme disease. A CAT scan confirmed that I did’t have cancer; I had a slightly elevated sed rate and otherwise normal bloodwork, and an ELISA and Western Blot confirmed lyme (Almost every antibody on my western blot was lit up in both the IgM and IgG ). It took 3 weeks for the results to come back and in this time I began to develop clumsiness in my movements and to note increasing loss of short term memory and random word substitutions. I saw three doctors and got a full work up. All agreed that I had neural involvement. Exam findings included: Slow dilation of my right pupil; headaches (don’t remember when these developed); jittery and unresponsive reflexes in various places; fluid sacks behind my knees; sub-clinical epileptic seizures (on an EEG); normal MRI & no heart arrhythmia.

December 2007: I took one week of oral doxy (12/08-12/13). On 12/13 a PIC line was put in and I switched to Ceftriaxone (Rocephin) for six weeks. I took daily doses of this until 12/24/07. I did not have steroids or antibiotics in the entire year before I was diagnosed. During the IV antibiotic treatment, my headaches increased. My clumsiness decreased. I developed increasing light sensitivity (which is much better now), and my teeth turned black.

My symptom levels were highly variable after this treatment. For the first two months (Jan/Feb 08), I was fairly comfortable (though not my old self) for 3 out of every 4 weeks. In the second two months (March/April 08), that  reversed itself. In the image below, red lines at height 2 mean I felt normal (though still slept lots); height 0 is “good quality of life if I don’t have too much to do”; height -2 means I didn’t want to leave my chair for much of the day and probably napped.

Red lines -- symptoms; Blue lines -- illnesses (colds, etc)

Some symptoms cleared up — I did not have any more frozen muscles. However, my memory and fatigue have been extremely limiting. Additionally, something as simple as a head cold seemed to lay me low, leading to days of extreme fatigue, pain in my lymph nodes, headaches, and so on.   I believe that my symptoms were more mild in part because I arranged my life to allow for significantly more sleep than in the preceding year — from 6-7 hours with two interruptions (on average) due to the kids to 8-10 hours with no interruptions (my husband started sleeping with the kids). I always needed to be asleep by 10 and sleep for 8-9 hours unless I was in a rare very good period (in which case I naturally wake up after 7.5 hours). When I slept enough, I tended to have less frequent relapses, less pain, and not need to nap most days. If I was ill or in a bad period, I needed extra rest even with all that sleep. Also, I worked to restructure my life and job around my symptoms while also trying to identify the optimal treatment/management strategy

Summer 2008 — My symptoms continued their variable downturn. My major symptoms at that point were swollen lymph nodes (sometimes painful), some memory loss, fatigue (highly variable hour to hour and day to day), headaches (sometimes severe), back & neck pain (not as bad as before), and monthly colds (instead of every two weeks), anxiety (no change). The word substitutions slowly improved and were gone by August 2008. I developed a new symptom, occasional difficulty concentrating. Additional symptoms included some light sensitivity (better than during treatment); facial ticks (rarely); jaw stiffness (rarely); ringing in ears (less recently); nausea and dizziness (occasional);

No one I’ve spoken with could easily tell me if I had an auto-immune response or if I was still infected, so I struggled with the question of treatment. However in June 2008 I tested positive again with a western blot (IgG AND IgM). My doctors’ explanations range from “your titers may not have gone down yet” to “you were re-infected.” I took it as a sign of current infection (whatever the cause) and I went back on antibiotics, this time oral minocyclin, in June 2008. I have been on antibiotics since then and started feeling better again (more like Jan/Feb). I also developed increasing light sensitivity and dizziness. In early September I put my care in the hands of an LLMD in the New York area added Mepron (an anti-bacterial) to the mix. I also benefit from daily yoga (light exercise) and cannot sleep well if I work in the evenings.

Fall 2008 – In mid September (around the 10th) I experienced a flare up, just over 1 week before a major stress point (the CHI deadline). Instead of going away, it got worse and continued until about October 25th. It was the worst 6 weeks I can remember since my diagnosis. I experienced new symptoms (air hunger), episodes in which I couldn’t move even a finger without getting out of breath, headaches that spiked when I tried to concentrate, days at a time in which I couldn’t concentrate or think clearly, no energy to bike or even walk places, hot flashes every afternoon combined with fatigue, increasing light sensitivity, a need to nap many mornings, and many other difficult symptoms.

On October 25th, I began a new medication — Zithromax instead of Minocyclin, and I experienced an improvement within about 48 hours. In the subsequent months, my improvement was fairly steady, although I had occasional downturns (one caused by 40 minutes spent, unfortunately, in a very hot room).  I had 2-3 good weeks for every bad one. However the bad weeks continue to be highly symptomatic, with fatigue, headaches, tender lymph nodes, cognitive impairements (memory; concentration) and tinnitus (just off the top of my head).

Spring 2009 — Over time I started to feel as if things were going downhill again (although the overall trend was still positive). In February, my LLMD added Ceftin twice daily to my regimen. This did not seem to cause any positive improvement, and I was having 4-6 B.M.s daily, often diarrhea, while on it. About a month later I weighed in 12 lbs below my normal since getting sick (I don’t have a scale so I don’t know exactly when I lost this weight). On March 13th, on doctor’s advice, I stopped all of the drugs (Mepron, Zithromax, and Ceftin) and started taking Penicillin 3 times a day. I am currently still on that regimen. I saw a definite improvement overall in March, including one day where I had no symptoms at all until 9pm! My pain is down, and my cognitive symptoms are less.

Summer/Fall 2009 — in June I had an unexpected and big improvement — 35 days in a row with almost no symptoms. Following that, though things were a bit up and down, I was overall much better than in the times before. On September 29th I stopped all antibiotics. Below are two charts that summarize my progress to date.

I was in remission for 6 months. In February of 2010 I began to have symptoms again. By April 2010 I had a relapse. I don’t know exactly when that ended, but I was beginning to feel better in July 2010. I have not taken great notes, but I believe I had a relapse in December 2010. I was (mostly) fine in 2011 (aside from occasional difficult days, I think), and I had another relapse in Spring 2012. In 2013 I had a relapse in March, but primarily bad for about 10 days. This seems to imply approximately yearly relapses, lasting one to six months, of varying severity.

18 Comments

  1. Devendra Jain said,

    July 12, 2008 at 12:16 am

    Dear Jen,
    I am one of those who has had the good fortune to have had good health for most of my 67 years. I do read a lot on health related matters but all with a layman’s level of education tempered with my own scientific background.
    My understanding indicates that sleep is the best healer for most diseases. Medication is necessary but on its own is not adequate. Unfortunately, today’s world considers sleep to be an interruption on a race to get more done.
    May I suggest that you plan to get at least 8-9 hours of sleep every day and if you feel fresh any day after 7 hrs, get an extra two hours at some other time of day. There is no sanctity of 7-9 hrs, it could be even 10 hrs or more initially. So let the body heal itself with help from all the medication which you have so painstakingly discovered.
    If this helps, then the next is to get your mind to rule over your body.
    Wishing you all the best,

  2. Sarah said,

    August 21, 2008 at 2:35 pm

    Check out the website bacteriality.com

  3. Karen said,

    October 10, 2008 at 11:36 pm

    Hello fellow Lymie. I found that after my treatment ( 1year of antibiotics) that I still felt crappy in a lot of ways. I thought I still had Lyme. What I think was really wrong was that my system needed to be rebuilt from all the antibiotics. I started making and drinking KOMBUCHA TEA and this greatly helped my stomach, my energy, my brain fog, my gallbladder problems (caused from the antibiotics). Kombucha helps you strengthen your immune system again. Give it a try. I noticed a big change within 3 months. I still drink it regularly. If you have any questions on this I will be happy to answer.

    Best wishes, Karen

  4. Al said,

    October 28, 2008 at 2:20 pm

    Greetings from another fellow lymie

    I’m very sorry you have been suffering. You are certainly not alone. Your continued original symptoms over all this time are extremely suggestive of under-treatment of your original infection, which is a very common problem in the mainstream medical community because of mis-information and politics which currently exist. As you probably are aware, there is HUGE controversy and little agreement on whether this infection can outlast a month or even 6 months of antibiotic treatment. It can! There are enough cases out there to know that many of those that miss the early ~1 month window of curative treatment (myself, probably you) may be difficult or impossible to cure, but the good news is that this disease can be managed, albeit by being on meds longer term. Learn all you can about this disease and the controversies, and then find a good, experienced Lyme specialist who is willing to think outside the box and work with you, or you’ll spend the rest of your life spinning your wheels. Here’s a good recent article to get primed:

    http://www.yankeemagazine.com/issues/2007-07/features/lymecountry

    One more thing: don’t let anyone give you steroids unless you are positive there is no infection (or it is treated simultaneously).

    Best of luck!

  5. jmankoff said,

    October 28, 2008 at 5:28 pm

    Thanks for your advice and good wishes!

  6. Kit said,

    April 4, 2009 at 11:21 pm

    I was diagnosed with Lyme in 2004 through the test now available at the Florida lab whose link you post. I thought I had Lyme back in 1991 but had the Western Blot test and did not know how fallible it was, so I didn’t repeat it. Our son who is 19, was born with Lyme. We have done many therapies including non-TOA cat’s claw. It was only a few months ago that I started with an antibiotic. (When we were first diagnosed, the antibiotics were not getting rid of Lyme.) But now I want to go ahead and try a heavier anti-biotic regimen. I am outside of Richmond, VA, and having a hard time finding a doctor who can fill me in on the protocol. Is it posted somewhere? The pulsing ceftin that I have read does seem to work? Also, has anyone been able to keep working at a job while doing the stronger antibiotics? I am supporting us through tutoring and tech writing, and can’t afford to lose the income.
    Thanks for keeping the great blog. Impressive work!
    Kit

  7. jmankoff said,

    April 10, 2009 at 9:08 pm

    Hi Kit,

    I haven’t tried pulsed ceftin … but it was certainly hard to work on minocyclin. My IVs I only had for 6 weeks so hard to judge their effect. As far as my job, during the 9 months I’ve been on antibiotics I’ve had to make many adjustments and am currently on short term, part time disability. I’d be happy to talk more offline about why I made that choice.

    There is a great list of doctors on the Lyme Disease Association‘s doctor referral site. Did you look there?

    Feel free to email me if you have more questions. jmankoff – [at] – cs – [dot] – cmu – [dot] – edu.

  8. K.Varszegi said,

    May 25, 2009 at 4:23 pm

    If your husband does research on Alzheimer’s you should both go see Under Our Skin this summer if you haven’t already. I was diagnosed with late-stage Lyme in late April 2009. It has been a struggle to wade through all of the info out there feeling the way I do.(I will not go down quietly!) I saw the movie at a local library and then purchased it for myself. I was very impressed with the research that Alan MacDonald is doing with Alzheimer’s and Lyme. Mind blowing- no pun intended.

  9. Cindy said,

    September 9, 2009 at 9:50 am

    Hi Jen,
    I want to share with you that your site is fabulous and well thought out and only one of a few I will return to.

    I am patiently waiting for legislation to pass so that we Lyme devoured folks can be treated without fear of our Doctors losing their license. I don’t want to go to some of the LLMD’s as I have spent over $25,000 in what was supposed to be the cure and unfortunately it was “I needed another $25,000 because I was so sick with co-infections and I had RMSF as well as Lyme”. This was all out of pocket.

    I have a diagnosis of CNS Lyme from my neurologist (2006) and have been referred to several ID Doctors that now want a positive test for Lyme. I guess my blood just won’t test positive anymore so they close their door on me. Challenging.

    I found 2 new bulls-eye rashes 2 weeks ago and decided it wasn’t even worth going to the Doctor to start this whole mess up again- my husband is beside himself. They have beaten the fight out of me. You can be dismissed only so many times before there is nothing left to discuss.
    .
    Needless to say I am glad that they haven’t done that to you. This is a site I will follow and maybe I will become invigorated again.

  10. jmankoff said,

    September 20, 2009 at 7:24 pm

    Thanks for your comments. Don’t give up, you’re health is always worth fighting for. That said, use your energy wisely, as some battles are very hard to win or take a long time.

  11. kim said,

    March 24, 2011 at 2:45 pm

    Hi,
    Thank you for all of the information. I am going on two years of treatment after 15 years of misdiagnosis. I feel much better on treatment but as soon as I go off I get very sick and my cd57 levels drop to half of what it was on treatment. My Dr. is thinking of p ulsing ceftin. We are waiting until summer when I am off from work. All of my symptoms are very similar to yours. I am keeping my fingers crossed that it works. Also, has anyone tried Rife machine treatment? I am thinking about this as well. If anyone has any info. about passing lyme on through pregnancy it would be greatly appreciated. I had two daughters while infected and I am concerned about my youngest.

  12. E said,

    February 24, 2012 at 7:16 pm

    just about to start Zithromycyin…two years soon…..ups and downs…rocephin iv..complications with PICC line….then po Doxy..then biaxin and plaquenil….then Doxy…tonight I begin Zithro….haven’t missed a day of work…but this is turing out be challening..for a very active mother of two/runner/RN….wow!

  13. jmankoffJen said,

    February 27, 2012 at 3:46 pm

    Best of luck with the treatment.

  14. Lyme said,

    May 9, 2012 at 10:43 am

    hi,

    I’ve enjoyed reading your story I have had and still have a lot of the your symptoms. I’m going soon on a treatment, just waiting for a positive test confirmation (otherwise I will only stick to naturals).

    All the Best!

  15. jmankoff said,

    May 9, 2012 at 12:03 pm

    Best of luck with that. Be aware that the tests are only 50% accurate (or slightly higher I think with Igenex) but in general Lyme is seen as a clinical diagnosis at least on my side of the Lyme wars :).

  16. Jules said,

    March 15, 2013 at 8:05 pm

    Hi there! I hope you’ve recovered! These symptoms, bar the hair loss sound like exactly what I’m experiencing. I know the doctor hasn’t even considered Lyme disease as she said my bloodwork was all normal, but these have been going on for 6 months now and it’s really affecting my quality of life! Latest thing to develop is the post nasal drip, but gland ache on and off, armpits and groin and swollen tonsils. Did all your glands ache or just neck ones? Also I get flu like symptoms with a temperature every 1-2 weeks. The more I read, I convinced, but just don’t know where I would’ve been bitten!

    My doctor thinks im a hypochondriac even tho my symptoms are tangible. Any ideas in what to do next?
    Kind regards,
    Jules x

  17. Carolyn Yawn said,

    March 17, 2013 at 7:26 am

    I had to quit work two yeas ago. I started getting one or two symptoms weekly. My husband was watching the news about a Dr. with a patient she had successfuly cured. My husband wrote down her info It took me two month’s to get an appt. I have been sick for about 20 years. I was dignosed with chronic lyme disease. I had already been dignosed with CFS and fibromyalgia. My daughter also tested positive for chronic lyme. My cd-57 stated at 61, my daughter’s cd-57 started at 30. My doctor is a internal Dr. Jules If I can help you in anyway let me know.Carolyn

  18. Jake Earle said,

    March 24, 2013 at 8:09 pm

    Every day, glands in the lining of your nose, throat, airways, stomach, and intestinal tract produce about 1 to 2 quarts of mucus — a thick, wet substance that moistens these areas and helps trap and destroy foreign invaders like bacteria and viruses before they can get into your body and cause infection. Normally, you don’t notice the mucus from your nose because it mixes with saliva and drips harmlessly down the back of your throat to be swallowed gradually and continuously throughout the day.^

    Most current article coming from our very own web portal
    <.http://www.healthmedicinecentral.com/reoccuring-yeast-infections/


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