Lyme Carditis? Waiting for confirmation and help, still no official DX

Hi All, this is my first post on this site and I am seeking info on other's experiences. I am a 45 y/o female, full-time RN, hypothyroid, and overweight. I live in Western Wisconsin, and woke up with a deer tick attached to my ear in April 2015. I have not been able to work since the onset of this illness.

On September 16th I woke up feeling unwell with a low grade fever, a fine 'scarletina' like rash all over my body (very small red raised bumps over entire body), a sore throat, severe headache and pain in the joint of my right hip and the large joint of my right great toe. I also had been experiencing a lot of palpitations. I went to the doctor and they did a rapid strep (negative), a CBC (normal) and then sent off a test for Lyme which came back negative (ELISA).

Over the following days I did not improve, but my doctor decided to start me on 30 days of Doxy in case it was Lyme (we were still waiting for results). Over the next 10 days, I started having palpitations all day long, sometimes it felt like my heart was bouncing in my chest. The rash resolved within a few days. I never had chest pain, just fatigue, dizziness, weakness, and a terrible headache. The low grade fever remained. I noticed that I was not thinking right and had trouble getting my thought out clearly. I went to urgent care as my primary MD was off, and they told me I was too sick for urgent care and I needed to go to the ED. I didn't want to go to the ED so instead I went home. The next day I didn't feel any better and my hubby said if I didn't go to the ED, he would take me there when I got home so I went on my own.

Once in the ED they ordered labs, started IV fluids and gave me their 'headache cocktail' (toradol, reglan and benydryl) which didn't help. I had such sensitivity to light I kept a blanket over my eyes. Due to the palpitations the doc ordered and EKG which came back with "T-wave inversions in all leads" which is typically indicative of an acute MI. I then had an echo in the ED which was normal. Due to the T wave inversions, I was admitted. Serial labs to check for an MI were drawn and all were negative and I received aggressive IV fluid treatment over the next 48 hours which did help some with the headache but still had palpitations (PVC's and PAC's). They said I would need a cardiac stress test in the next few weeks. Was also tested for Babesia and Erlichia which were negative.

I was discharged and continued taking the doxy for a full 30 days and I did see improvement in the headache and the pain in my foot but that was about all. My fatigue continued to get worse to the point I had no energy/endurance. I also noted increased dizziness and migrating joint pain (sometimes right knee, thumb joints, low back, right hip) and continued headache at the base of my skull. The 'brain fog' also continued, but seeing as all the tick borne labs were negative I started looking at what other diseases could cause my symptoms and started thinking Lupus maybe as I already have one auto-immune disease, a brother with MS and a dad with Crohn's.

Fast forward to this week Monday when I had the stress-echocardiogram (with all of the symptoms listed previously in addition to new onset sharp right chest pain, and dull pains around heart area in left chest area) which I failed as I had ST segment changes during test. The cardiologist sent me over to do a cardiac angiogram 4 hours later. The angiogram was perfectly normal (thankfully) but now I was more confused and started looking at Lyme carditis. I found an Infective Disease article from July 2015 stating that 10% of Lyme Carditis patients have ST changes, and up to 50% have T-wave inversions while having normal cardiac enzymes and normal echocardiograms. I asked the cardiologist to reorder a Western blot, which he did though the results won't be in until the end of the week.

I went back to my primary MD Tuesday evening and discussed this article (and others related to it) and she seemed surprised and unaware of this type of illness from Lyme. She read the article and after discussion decided to put me on cefuroxime 500 mg twice a day for 30 days. It is only 2 days later and already I am noticing more energy, less palpitations, less joint pain and my headache is better. Still don't have the results from the second Lyme test, but I think based on such notable improvement in less than 48 hours it sure seems like Lyme to me. My doc is not an LLMD, but she is willing to listen and has been very helpful.

Assuming it is Lyme, how do I know if 30 days of cefuroxime is enough, especially since I already did a month of doxy? I am taking probiotics in addition to Kefir to restore normal gut flora. Any thoughts and suggestions are welcomed. I do have a referral to Rheumatology coming up on Monday which I probably will keep. Thanks

K

Annette, you aren't giving yourself enough credit!! You are doing well, and thank you for welcoming ShmilyKate! That's how communities like ours keep up with everyone!

Hi ShmilyKate!
Welcome to our community!

30 days of any abx isn't enough when you have this level of involvement from these infections. From the symptoms that you listed, I would say that you not only have Lyme, but at least one co-infection as well.

You really need to be tested by a specialty lab like Igenex, who have trained their lab tech specifically on how to perform these tests, and they use the proper testing medium, as well as giving the proper amount of time for these tests to be done - they don't rush them, which is very important since the Lyme bacteria replicates very, very slowly compared to most bacteria.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.
​

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

Welcome, Shmily Kate,

I'm so sorry for the severe symptoms you've encountered since your tick bite. It certainly sounds like Lyme to me. I've heard only excellent things about Igenex lab tests, although since I was clinically diagnosed, I've only had tests that have been covered by my insurance so far, with a few exceptions.

I just wanted to mention that I have daily heart palpitations and sometimes as strong as you describe. In the weeks when the arrhythmia started I also had chest pain, sharp head pains and dizziness which one evening prompted me to go to emergency to make sure I wasn't having a heart attack. At the ER the EKG showed poor R-wave progression and premature atrial complexes, chest x-ray was normal and blood tests revealed low Troponin-I as well as low MPV. I later followed up with a Cardiologist, did a full cardio work-up wearing a monitor (2pt ekg?) for 21 days. It only revealed an arrhythmia which the doc said was nothing to worry about and he did not believe it was related to Lyme disease.

I've since found out from an LLMD that I am Hypothyroid and borderline Hashimoto's. During my 2 year experience with Lyme, my previous symptoms of muscle spasms and severe imbalance as well as other odd and unexplainable things have subsided with antibiotics as well as herbal protocals.... however the heart palpitations continue to disrupt my life and I would love to find the right cocktail to cure them.

I've also read that Hypothyroidism can cause heart palpitations and I wonder if this could be the root cause?

Regarding seeing an LLMD, I highly recommend it, although it's a real blessing that your primary doc is open to treating Lyme and becoming informed, so if you can't get in to see an LLMD soon, at least she can continue the treatment that seems to be working for you thus far!

Best of luck - I will be following your progress and hope for the best. You've come to a very good place with knowledgeable and caring moderators.

Thanks to Cd and KeyLyme. I have noticed the palpitations for a year or so, but they were only occasional and my doc thought it was related to menopause (my periods have been VERY irregular for over 10 years, likely due to the Hashimotos). However in September they started coming all the time and were much more noticeable prompting me to take atenelol throughout the day (my MD was aware). I was diagnosed with the Hashimotos when I was 27, when my youngest was 6 months old. I had a goiter throughout that pregnancy but the docs never checked my thyroid levels. When they finally did, my TSH was the highest my doc had ever seen at 176! I was then referred to an endocrinologist who was amazed I had a healthy baby/pregnancy as she was sure I was hypothyroid throughout the pregnancy. When I told this to my new primary I don't think she believed anyone could have a level that high.

When I did get sick last month, they rechecked my TSH and it was 17 so they increased my levothyroxine to 300mcg day. When I was hospitalized a week later the level was back to normal (too fast) so my doc doubted the level of 17 a week before. I have since been rechecked and I was too low, 0.17, so I was decreased back down to 275 mcg a day and will be rechecked in 8 weeks.

So how do I get the Igenex testing? Does the doctor have to order the kit from the company or is that something I can do? I have seen other posters state 'I had the kit and took it to my doctor'. The website is not clear on how to go about it (at least not that I can find). Thanks to all for your support and encouragement.

Kate

I also have cardiac issues, my cardiologist said I have an electrical condition issue.... However as far as I know it's without a name.... I believe his best guess due to symptoms. I have PVCs and PACs as well, I have runs of SVT and have been in atrial flutter. This all began durig my pregnancy with 4 yr old. I have been taken via ambulance to the critical care ED and been administered in beta blockers and just monitors for a day multiple times. I collapsed in a store shopping feeling like a zip tie was around my bra line with shortness of breathe and nausea. I have had heart rates in tje mid 200s, been bigeminy and trigeminy for weeks on end with PVcs and tachycardia. Stress echo normal, normal EKGs other than p wave and my event monitors and the Zoll in the ambulance and hospital monitors have picked up my others stuff when I was clearly greatly affected by it. I take loppresor prn. My cardiologist doesn't believe lyme causeway anything other than heart block in acute stage...... :-/ when I am on antibiotics it actually gets worse, it's a real conundrum. When I get bad PVCs I get pressure on my neck and head and shortness of breathe. I believe if they are times when the tricuspid valve is closing the clod backs up the carotid. Super uncomfortable to say the least. I often wake out of a dead sleep with irregular beats and super tachycardic, I will be nauseous dizzy and tingling. I will valsalva,,splash cold water I myself and lay on my side praying for it to pass. I can't go tithe hospital everytime but it's scary and I often wonder when it's happening"what if I should go and I don't and end up in v tach or something". It's horrible, I am in my thirties and my world has gotten so small. I now I had fast runs in my twenties too, it wasn't exactly the same as this as I think it was just Svt then without the PVCs. But that's just a a guess. I was diagnosed with lyme in 2013 but had symptoms since childhood, off and on. I have almost every symptom on the list and the some but not always at the same time. Lol
Today is day 6 of debilitating migraine like head pain and stiff neck that makes me nauseous. Nothing has helped, almost went to ED lastnight, but they will give fluids and meds and after that I will be back at square one so what's the point. I do not know what to do about my heart. My 16 yr old am daughter has lyme and she had started with cardiac issues similar to mine 3 yrs ago. She had her tick bite at the age of two.

ShmilyKate said...
Hi Annette and Traveler, and thank you for the welcome. I have looked over the 'new to Lyme' and read a lot of the information as well as looked into the links. I tried to find out more about how to get IGenex testing from there website but really couldn't find out specifics (i.e. cost and how to do it). Does my MD need to order the kit? The website said that they don't take insurance either, which if needed we would do.

I went to a website (can't recall the name) but once I entered my info and signed up it gave me the name of 3 LLMDs in my area (well they are all about 60 miles away). I was going to pursue that route if my primary didn't listen to me, so not sure if I should wait in pursuing the LLMD at this time. I will enable email for this forum.

Do you think that I was just recently infected or do you think I have had this for a while? As I mentioned in my post, I did wake up with a deer tick attached to my ear in April of this year but didn't really become symptomatic until the middle of September? If I do have co-infections, wouldn't the ceftin 500 mg twice a day cover those as well? I am new to all of this, so I appreciate any info. Thanks again.

Kate

It's actually quite difficult to know exactly when anyone was infected without them knowing they had a tick attach, got the bulls eye rash and then had symptoms start up right away. We are all just guessing for the most part.

And no, Ceftin alone will not take care of all of the infections. I'm not very knowledgeable about the dosages, but you can follow this link and have the best guide we have for abx treatment for these infections:
www.ilads.org/lyme/B_guidelines_12_17_08.pdf

ShmilyKate,
I would encourage you to talk to your doctor and see what the plan is. Maybe as Happyjo was saying, the plan may be to increase you gradually to avoid major herxing. If not, then yes, you will need to either get them to raise the dose or find another doctor (LLMD) that will prescribe you the correct dosages for the appropriate time. It's for this reason that we suggest that people go to LLMD's to begin with, but it certainly doesn't mean that a doctor that hasn't been made aware of these protocols won't follow them - it's just very unlikely.