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Lyme Disease/Could I really have Lyme?


Here is my story, In May of 2012 I received a tdap vaccine and a hep-b vaccine.   At the time I had just finished mods for my 3rd UTI in 6 months.  I was also having palipations but I attributed it to stress, they had been going on for one month.  Five days after the vaccines I awoke with a tight band feeling around my chest. I felt over heated as i was wearing my sweats and robe and was under the covers.  i did not sweat.  Pain in the center of my chest which moved to the left side shortly aftersward and my arms felt like they were falling asleep but very mildly.   This somewhat subsided after about a half hour.

Over the next few days my arms would slightly ache or feel a slight tingle.   I went to the doctor who gave me e vaccine and he ran some blood tests and an EKG.  Nothing was found.  He set me up to se a neurologist.  Before I made it there I kept getting numbness in my arms and hands. The pains and numbness was not alway present butmo Ed around to diffrent parts of my hands on diffrent days. I also had noticed some ringing in my ears.   My arms ached usually it came in as I used my arms throught the day. I started to have pain in my shoulders even just sitting down I waned to let themgo. Iimp because. It was so uncomfortable.  I would wake up morings and feel like my knickles were swollen and stiff u there were not swollen, I also had tender spots on my body, from what I read they were simular to fibromyalgia, felt like a bruse but nothing was there.  I even had one on my scalp, which kinda buned to touch it.   I was tired and would feel a lactic acid burn in my muscles when going up one fight of stairs or when moving the laundry from the washer to the dryer. After about 3 or 4 weeks I awoke with pressure in my ears like I was on an airplane that is ascending.   I also had throat pain that pulsed but was not the feeling of what a soar throat feels like and my younger felt numb iwas scared and I thought I was having swelling issues but I may have been more paranoid than really having swallowing issues.    I was able to get some ammoxicillin from my GP the next day who thought I was coming down with somthing and that the ears and those were unrelated to the numbness and pain.  About a week after this I started to have numbness in my feet and stiffness in my shins, I also noticed I had a tremor that was activated by motion that stemmed from my back and affected my arms. I started getting muscle twitches everywhere.   I was able to get my doctor to continue the ammoxicillin for a full 30 days and had a lyme test.  I actually had 3 tests all were negitive.   

While on ammoxicillin My second day into it my triceps hurt so bad, felt like deep muscle pains but I did nothing.  I gradually noticed my numbness and pains were fading.  My other symptoms remained and toward the end of the treatment I started to feel Good except for the twitches and the tremor.  But on the 3rd day before the last day of treatment I got a 12 hour migrane that affected my eyes ears scalp teeth throat tongue every thing from my neck up.  Once I was off the amoxicillin which was 3 weeks I began to feel ever so slightly the tingle returning to my fingers. Also some slight aches here and there.  I went to the hospital and requested my Lyme results.  After looking at athei discovered that my western blot showed 4 reactive bands which were IGg antibodies.   Another test also showed 4 bands of which 2 were diffrent.  I began to suspect Lyme.  I told my doctor and shoed him the bands.  I have searched the net high and low for answers.  He agreed to give me 3 weeks of doxy.  For the first two weeks the numbness and pains did not seem to change in my hands and arms it wasn't bad but it's we noticeable and it bothered me mostly because I didn't know what was going on. I aslo began to have constant ringing in my ears  So at about 2 weeks into the doxy I took a bath in epson salt. I had done this also when I was on the amoxicillin, and felt it helpe a little with the twitching.  Well when I did that my arms felt completely better, which was shocking to me but I had a new pain, it was in my neck on the right side  and felt like my carotid artery was swollen, the next day it was still there and the day after that it moved to the left side before it went away.  

I made an appointment with a Lyme doctor which took a few months.  So about 2 months after the doxy was done I saw the doctor. He prescribed me some more doxy, at the time my symptoms were:
Occasional numbness between the shoulder blades, tremor, twitching, palipations, minor tiny quick deep muscle aches in my arms and slight shoulder discomfort.  Shortly after starting the doxy I noticed my left wrist was bothering me like I injured it, but I don't recall for sure when exactaly it started to bother me.  My palipations seem to have subsided and everything else seems the same.  I'm not 100% certain but I think my tremor is now in both wrists, I'm not really sure how long its been there though.   After 2 months on it my doctor gave me tetracycline.   I've been on it about 5 days.  I am having ever so slight pains in my arms which I had while on the doxy.  I haven't noticed my back shoulder blades going numb much anymore.  I don't feel like I am herxing or that I ever have.   I have not done the epson salt in a while bio I might do that soon to see what happens.  

I'm so afraid that I won't be cured of this shake or tremor.   Please tell me what you think.  I had Norma MRI  & blood tests.  My wrist still hurts I have tremors and twitching. The ringing in my ears sytoppedv afteri finished my first round of dozy.  I had tons of other symptoms that I left out because I can't even remember them all.  I'm afraid And don't know what to think.    Sorry for typos using an iPad

Dear Jewels,  I'm going to answer your question, "Could I really have Lyme"? and the answer is YES! Your symptoms are ALL too familiar to me and many other Lyme patients I've talked to. Without question. I have probably experienced every single symptom you've mentioned, in the 3 years that I've been sick.

Because you tested positive for 4 bands on your IgG test, but not IgM, it sounds like you have Chronic (or "Persistent") Lyme. It may have been the case (as was with me) that you were not diagnosed and treated right away and the Lyme bacteria had plenty of time to spread to your tissues and joints causing the symptoms you've mentioned. It sounds like you may need to find a new LLMD, unless you are happy with the one you have. I would ask him if he follows Burrascano's Treatment Guidelines, which are pretty standard amongst Lyme Literate MDs. (and NOT the IDSA guidelines which only call for 30 days of antibiotics before they pronounce you "CURED"!

Here is the link:   I would HIGHLY suggest you read this entire document and pay attention to page 9 to see how many symptoms match up against his list. He talks about treatment regimens which include boosting your immune system and also the importance of detoxing to get rid of the bacterial die off. (THAT can make you feel REALLY sick - which is basically what a "Herx" is)

As far as the shakes and tremors, I would HIGHLY recommend you start taking large doses of magnesium - Perhaps 2 grams (which would be four of the 500 mg tablets) Magnesium has been shown to reduce tremors and twitching as well as having the added benefit of preventing migraines. It has been a wonder drug for me!

I would also recommend the book "Out of the Woods" by Katina Makris. I just read it recently and could SO relate to what this woman went thru. It sounds very similar to your story as well which is what made me think of it!

If you need help in finding a different Lyme MD, (it would be good to have one that is ILADS trained) I would suggest going to and click on the FLASH DISCUSSION. There you will be able to post a request.

Jewels - I wish you the best of luck and I think that you're on the right track, as far as treating your symptoms with a presumptive Lyme diagnosis. Especially if you had 4 IgG bands - that basically says you were at one time exposed to the bacteria that causes Lyme and it's no coincidence that you are experiencing these symptoms now.

I hope that helps - please feel free to contact me again if you have any more questions. :)

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.


I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

I have a blog called which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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