Question for JDB

Hi Dr. J, I am not trying to be antagonistic at all but hope that with your medical background you could help me understand a constant symptom.

I awoke with a deer tick nymph attached to my ear in April 2015 and my only thought was 'thats odd, I better save it because if I get sick later I will forget about it". In September 2015 I awoke after having worked a normal 12 hr hospital shift (I work inpatient hospital Neurosciences-Peds-Trauma) to find that I felt sicker than I had ever been.

I had heart palpitations, profound and debilitating fatigue, a sore throat, conjunctivitis in my right eye only, achy joints and 'fine scarletina type' rash all over my body but the worst symptom of all was the excruciating headache. It was left occipital and it just POUNDED non-stop. I was so sensitive to light. It even hurt the soles of my feet to walk on them.

I went to the doc who ordered a CBC, strep test "and if that is all normal I will order a lyme panel". I had completely forgotten about the tick bite until that point. I ended up admitted to the hospital for observation because I had "T-wave inversions in all leads". All cardiac enzymes were normal for the next 48 hrs. Flash forward 5 weeks and I was no better. Elisa was negative, as were erlichia, anaplasma and babesia. Echo was normal as were all other lab tests. Had a stress test which I failed, (not surprising due to the extreme fatigue) but it showed some ST changes so I was sent for an angiogram that afternoon. The cardiologist was convinced I had 'heart disease'. The conscious sedation meds didn't work for me so I was awake and alert through the procedure and I distinctly recall him saying 'this heart is perfectly normal" (except for the T-wave inversions) which he could not explain.

Flash forward to the beginning of June this year and I had to have hip arthroscopy for a labral injury to my right hip (which had never bothered me before I got sick) and just before they put me under I said "just so you know, all of my T-waves were inverted last fall, but I had a normal angiogram" to which the nurse replied "and they still are" My left shoulder is a train wreck, calcific tendinitis, bursitis, AC impingement and a labral tear. I didn't have ANY trouble with either one of these joints until I woke up one morning in December with both my R hip and L shoulder killing me.

I have been on antibiotics since Novemeber and they have helped with the neurologic problems (mainly the headache and parasthesias) but I still have palps and fatigue. The Journal of infectious disease published an article last summer stating that 'up to 50% of Lyme Carditis patients have T wave abnormalities and ST changes". That seems to be the ONLY diagnosis I can find that fits me. I have been tested for virtually all AI disease and they were negative but was started on plaquinil in January as the Rheum 'thinks it might be sero-negative RA' The cardiologist discharged me after the 'perfectly normal' angio.

So what should I do? I don't run to the MD for every little ache, pain, palp, or weakness. Do YOU know any reason for my T waves to STILL be inverted 11 months in? Thank you in advance.

Kate

Kate, Sorry I am not a doctor....

I had a horrible time with my heart when I first noticed my lyme symptoms. Mine started with a sore neck. Gosh when I turned my head from side to side it sounded like I had a bunch of ball bearings with absolutely no lube. It was like gravel. Then came the headache and it was not like any headache I had ever had. The ear weirdness. Like all plugged up and going up in altitude. But.... along with that was the heart beat that I could feel throughout my entire body. Oh and the knee pain. I was a super jockette (yeah, I'm female besides my screen name) and I had bad knees that were wearing out and a couple of meniscus tears. So I went to the ortho and got a shot of cortisone in both knees.

But my heart..... That was the scary one. My Dad died at age 36 of a heart attack and so this was a concern of mine. Internal medicine doc put me on blood pressure meds. The anxiety of hearing my heartbeat all day and night was making my crazy and my BP was up. My pulse was going way up.

Now I was an athletic woman and had sinus tachycardia but was super fit. This was so very foreign.

I tried the stupid meds and then they wanted to give me more heart meds. I jumped off that boat and went it alone. I do not recommend this!!!!! I am pretty stubborn and I know my body. I knew something was wrong and it was not something that I thought could be cured by a pill.

Research and research and I found herbs. I started out on motherwort. Because of this article. buhnerhealinglyme.com/symptoms/heart-issues/

I started out with one drop and slowly worked my way up to the recommended dosage. Then I moved on to Hawthorn.

Then I did the Buhner protocol. It took me months, but finally I got back to "my normal." And now I am working my way back to being a athlete. Oh and Kate..... I am 65 years old.

My knees are shot and I need replacements, but my heart is doing well again.

Treatment is what helped me. I hope to someday see Buhner and tell him how awesome his research was for helping me.

Sorry I butted in, but you sounded like you had the heart stuff I had.

Thanks PeteZa and JDB. I was started on motherwort when I first saw my LLMD in November, but I take a capsule from Soloray labs twice daily. The last time I had a fever was in November.

I do have periods when my headaches flare (left occipital area) and they are bad. I don't check my BP at home, but I have had episodes where it is elevated. I had to see a neuro-ophthamologist last week as when I had my plaquinil eye re-check I noted that when I covered my left eye I would develop a transient blind spot in my right eye. The day I saw her I don't recall a headache just my normal fatigue but my BP was 167/97 x 2 readings..and it has never been that high to my knowledge. She ordered a brain MRI, which was, you guessed it "perfectly normal". I have an appt to followup with my primary MD on my BP (I think that was an isolated event, but I cannot explain WHY it was so high that day)

Below is an excerpt specifically talking about T-Wave changes, which is what ultimately lead to my Lyme Carditis diagnosis. Another link below talks about all of the systemic changes that can occur in Lyme, which basically says that if symptoms are confined to one area (cardiac, GI, neuro) it is NOT likely Lyme. It is only when symptoms are manifesting in multiple systems, it is LIKELY Lyme (I have symptoms in every area).

This is an excerpt from the IDSA on Lyme Carditis by
Matthew L. Robinson MD, Takaaki Kobayashi MD, Yvonne Higgins PA, MAS, MS/ITS, Hugh Calkins MD, FHRS and Michael T. Melia MD
Infectious Disease Clinics of North America, 2015-06-01, Volume 29, Issue 2, Pages 255-268, Copyright © 2015 Elsevier Inc.
"Although typically advanced heart block and positive Lyme serology bring most patients to proper diagnosis, other ECG changes may be witnessed, including a wide spectrum of AV block (described previously). In 1 of the early reports of Lyme carditis, 10% of cases included ECG ST segment depressions, and 50% showed T-wave inversions. 4 ST segment elevations may be present in cases of myopericarditis; other ST changes have also been seen but are nonspecific. 27 34 Echocardiographic findings are variable, with some cases showing minimal left ventricular or right ventricular dilatation, although most patients have normal-sized ventricles. 4 29 66 LV function is typically normal and without wall motion abnormalities, although patients with myopericarditis may show diffuse hypokinesis, and other patients with depressed left ventricular systolic function have been described. 4 5 29 32 49 66 Cardiac MRI may show areas of increased signal intensity and focal late gadolinium enhancement with subendocardial sparing in some cases. 27 32 33"


http://www.jpands.org/vol14no3/maloney.pdf

Thanks for taking the time to read. Kate

I'm very sorry to have to do this, but this thread cannot continue, we have rules about how a MD can conduct themselves on here, and we can't encourage them to break the rule:

RULES:
8. If you are a medical professional, do not use the forums to distribute professional medical advice and/or promote your services.

Each and every one of us has agreed to these rules by joining this forum, and I have the 'duty' as a Mod to enforce the rules, whether I agree with them or not. So, my apologies, but I'm locking this thread at this point.

And, just to be clear, as I know that JDB believes I have animosity towards him (which I don't) - I am not saying that you, JDB, were promoting your services.