Lyme or MS? Might need a good LLMD in DC area

Sorry, but this might be a bit long. It all started 2 months ago when I went for a run. I was training for a 10 miler which I was going to run in a week. It was going to be my comeback from running competitions since I was 15. I am 26 now. Anyway, it was ironic how 2 days later I started feeling shortness of breath, and chest tightness, but nothing else. I went to my doctor and she ordered X-rays which came out negative, but I still had the shortness of breath 2 days later, and now I also noticed a cold sensation in my hands, feet and back.

I went to a pulmonologist and he gave me protonix and lots of asthma medications and ordered a barium swallow for acid reflux and an asthma test. Both came out negative. But 3 days after first taking protonix mild heartburn started, a week later I had a really bad attack, which in retrospective it was my first acid reflux attack, another week later I had my second acid reflux attack, with esophageal spasms this time, my left arm started to mildly hurt, specifically my muscle. Now I had chest tightness, arm pain, extremely dry throat, abdominal pain, fatigue trouble swallowing. I thought my heart was going bad so I went to a Urgent Care Center and they did an EKG and blood tests... Nothing. They put me into Nexium and I stopped taking the Asthma medication and Protonix. Symptoms were still there a week later, but started feeling that my heart muscle wall got inflamed, and my left hand started to hurt a lot. I went to an ER, they ran EKG and X-Rays... Nothing. They told me that it was definitely acid reflux and made me take also Zantac. I also had noticed some kind of bubbles popping in my hand and left chest... Which after the ER I discovered it was called muscle twitching, something I never had before.

Lucky me, one day after the ER, I felt that my throat got really tight, like someone was grabbing it and I had problems swallowing again. I had heard it was a symptom of acid reflux so I endured it, but a day later the muscle spasms spread through my whole body and I started feeling pain in all my joints, as if I had run a lot the previous day. There was also heavy fatigue. It was hard to hold even my phone over my head.

I thought it was a side effect of Nexium so I stopped taking it. The muscle pain was still there so I stopped taking the Zantac as well. My boss had commented about killing a tick over the weekend and made the first comment about Lyme disease. I researched the symptoms and noticed a correlation with my symptoms, so I had some blood tests. Now, I don't know how hard it is to run this, but they told me to wait two weeks for the results... I know third world countries are faster than that. Still waiting a week to get the results.

By the way, after ditching the acid blockers, I haven't had any acid reflux or chest tightness or shortness of breath. The abdominal pain is still there and I am waiting on an Endoscopy this week. I noticed that my stomach was getting better over the weekend so I had a glass and a half of wine... Bad idea. I felt nauseous instantly, and the next day I had to grab the walls to not fall down when walking. I am one of those lucky ******s that never have been hungover after drinking a lot, so how on Earth some wine made me feel so bad? I cooked some food and took a cold bath. A couple of hours later I felt better and did some walking that turned out to be 3 miles because I felt good enough. Also 2 days before I felt some joint cracking noise which has been getting progresively worst. Now even lifting my hand makes that cracking. I went dancing today and with all the muscle movement I feel some muscles are inflammed, mostly where the cracking noises occur.

I don't know if it might be Lyme. I've researched MS, ALS or Rheumatoid Arthritis, but I think that the month that I started feeling muscle problems is too short to get any of those diseases, my age is also a low risk for ALS. I will wait for the test results but listening how the ELISA only detects a small number of cases makes me uneasy. After getting the results I will go to see if I can get some muscle tests to rule out muscle diseases, but I also want to contact an LLMD that is really good in the DC area. Does anyone have good recommendations and how they experience went? Also, does anyone feel that their muscles feel tender when the pain is worst? Do you think I have Lyme?

Thank you very much for reading all of this and your help is much appreciated.

Hi Isitlyme24!
Welcome to Healing Well's Lyme Disease forum! I am terribly sorry that you even have to research the possibility of having Lyme Disease, I am sure glad you found us!! I am sure you will find us to be a caring, understanding and helpful group!!

You have been given a lot of really great info by Lymster and Springsjean!! Although I'm sure there isn't a one of us here that wishes this possibility on you - YES! You should seek out the right medical evaluation right away! Although most here use antibiotic (abx) protocols, several of us have seen or are seeing great results with natural protocols.

If you haven't already, it would be beneficial 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 relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.

For more information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:phassan@optonline.net

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also 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

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Please feel free to post your questions and concerns and be sure to use our search function to search for info from older posts.

Once again, welcome! We look forward to getting to know you through your posts!

Thank you for the tip Lymester. If I have Lyme I will try this out. It sure does sound that this Doctor is chasing something that shouldn't be chased. I mean, it makes sense that if a person has had Lyme for a long time, this person will develop chronic symptoms because of all the damage that the immune system has suffered. If you are going to do research, at least try to help people out instead of trying to do damage. But oh wells, most of these researchers are mostly interested in money than anything else.

Well, I got an update. I had an endoscopy and they did find a small ulcer in the duodenum. They took biopsies and I am waiting to hear if they find what it is causing it. I highly doubt that a small ulcer is the cause of all my problems.

I also had the results of my blood test and they came up negative with Lyme. My doctor was like, you don't have Lyme because you only got one positive band out of 10 on the ELISA and 1 out of 3 on the Western Blot, but that made me think how is it possible that I got one antibody for Lyme.

I took a copy of my results and noticed that I am positive in band 41 on both tests, which I found out that it means that flagella of a spirochete was found. I think if both tests gave out positive of flagella its pretty sure that I do have or have had a spirochete. I have read that the most common or the only other spirochetes are the one for syphillis and for periodontal disease. But you see, I am pretty sure that I have never been exposed to these two diseases. I will admit that my hygenist has insisted in more flossing because my gums bleed sometimes when I floss, but she has dismissed that I have gingivitis. So the only one left is Lyme, which correlates with many of the symptoms I currently have. Many people say that band 41 is enough to be diagnosed with Lyme, others say that it is not, because it is not Lyme specific.

I also compared the results with another blood test that I have 4 months before this one and noticed that my white blood cell count has decreased from 5.6 to 4.5. I thought that it was not much at first, but now that I think about it, it is 20% less of what I used to have. Another 20% less and I will be in big trouble. My blood cell count went down from 4.64 to 4.28, 0.08 away to be considered anemia. I don't know if this is a sign of Lyme as well or some other disease.

I am thinking on going to a LLMD first before going to a neurologist to finally rule out Lyme and chase another Ghost. What do you guys think?