Hi everyone. I am looking for any info/advice/thoughts that anyone can provide. I am getting sicker by the day and have no idea what to do.
Long story short...diagnosed with Lyme Syndrome at 10, Fibromyalgia/Chronic Fatigue Syndrome/Epstein Barr at 18, Hypothroidism at 28, Chronic Lyme Disease at 30 (by a homeopathic doctor), and in between a history of GERD, hiatal hurnias, ulcers, anemia, hypoglycemia,random periods of vomiting and anxiety. Today, I found out I have quite a few food sensitivities - gluten/soy/dairy. I have already changed my diet and started a few supplements that my doctor gave me.
For a few months (with symptoms increasing rapidly over the past month and especially over the past 2 weeks), I have been experiencing dizziness, numbness in my arms/hands/legs/feet/face, headaches, and loss of balance/coordination. I also have a hard time finding certain words in conversation and a hard time spelling words that I don't normally have a problem with. I had a brain and spinal MRI done this past Friday and have an EEG and an EMG scheduled next week. I picked up my MRI report and saw "mild Chiari 1 Formation" at the top of the sheet - the only thing I understood on the report. I haven't heard from my neuro yet (I got the MRIs late Friday night so technically it's only been a day), but the office told me he would go over my MRIs after my EEG and EMG next week.
During a thyroid check up last week my TSH level came back at a 6.05 - a month and a half ago it was at 2.54.
Basically, I have been sick my whole life, but things have really gotten bad this past year. I had to stop working almost 2 weeks ago (I stand at my job) and don't feel comfortable driving. I really need to get my life back and don't know what to do next. Any thoughts would be appreciated! Do you think this is my Fibro? Lyme? Thyroid? Food sensitivities? Something else??
Welcome to you! You have been through so much, and I admire your resolve in continuing to seek answers and solutions.
Your profile doesn't say where you are, but I will assume you are in the U.S. I could go on and on based on the good information you provided above, but will cut to the chase for now and suggest strongly that you find an MD who takes a more progressive view of Lyme disease and other infections ("co-infections") that often come with Lyme.
I am not medically trained, so this is just me talking, after having struggled to find a diagnosis and treatment for Lyme and a co-infection a few years ago. From what I have read, there is no barrier to being infected again -- if you have Lyme already, there is nothing to stop a new tick in a new year in a new town from giving you another dose of Lyme, thus causing a ramp up in your symptoms as you have recently experienced.
Another wild card are the co-infections, a half dozen or so infections carried by the Lyme ticks about half the time, and each has its own set of symptoms. Sometimes (as happened in my family) we probably got Lyme and then got bitten again a few years later, and that pushed my own immune system over the edge, unable to keep me functioning semi-normally as I had been. That caused me to find a Lyme specialist and get a diagnosis of Lyme and babesiosis (similar to malaria).
There is a serious split in the medical community about how serious Lyme is or is not, and those who sincerely believe Lyme is not a big deal are inclined (along with the rest of so-called mainstream medicine) to diagnose CFS or fibromyalgia or other vague ailments, simply because the experts who cover the field truly believe that Lyme is hard to get and easy to cure with a short course of antibiotics, and that any remaining symptoms are an auto-immune reaction trying to fight off bacteria that are long gone.
I have however seen no back up in the literature on this point, and believe myself that it is balderdash. These views were baked in about 20-30 years ago by infectious disease (ID) docs and rheumatologists, who were the first to study the unusual incidence of a new ailment near and around Lyme, Connecticut. Sadly, those same docs lost their sense of wonder and have been a blockade to research and advances ever since.
There are exceptions among the ID docs and the rheumies and neurologists, but the enlightened ones are few and far between. Your own doc that you are waiting to see now may well be one of the unenlightened.
However, your homeopathic MD might be of help if he is interested in Lyme and able to spend the time to learn.
The main voluntary group for docs who 'believe' in Lyme is ILADS, the International Lyme and Associated Diseases Society. Their website is
and they have a referral service to help you find one of their members near you. Not all of the member doctors are as rigorous as I would like my doc to be, but it's a developing field of medicine, so things are a bit all over the place sometimes. But it's a start.
Because of the split in the medical community about Lyme, in many communities, broadminded docs (the "LLMDs" -- patient slang for Lyme Literate MDs, not an official title) keep a low profile to avoid ridicule (at best) or harrassment from the local medical board (at worst) from nonLLMDs, so it takes a bit of sneaking around to find an LLMD sometimes.
In your situation, I would definitely find an LLMD for a second opinion. You may decide not to tell your current docs that you are going for a second opinion, because nonLLMDs sometimes fear being branded as collaborating with the LLMDs. All very James Bond. Would be fun if we weren't so ill.
Fibro and CFS are common "gee I dunno" diagnoses from nonLLMDs. The thyroid can be affected; I was on thyroid supplements for a while but as I got better could stop them. Digestive issues are common with some of the Lyme co-infections.
Unfortunately MRIs are not very helpful in diagnosing Lyme, because the results can look like multiple sclerosis (MS), and it is difficult for an MD who does not 'believe' in Lyme to inquire further. There is another test, called a SPECT scan, which Lyme docs often use (but nonLLMDs do not) that looks for areas of low blood flow in the brain due to swelling which Lyme causes, but MS does not.
The key thing is to find a Lyme specialist; after that, things can begin to fall into place in a way they have not before.
Please let us know how we can help -- in the meantime, keep on keeping on!
It really does sound like you have chronic Lyme. How were you treated at age 10? I am guessing you were undertreated and the infection has continued ever since. (I am not a doctor though. One thing I cannot speak to is the Chiari malformation. I just don't know anything about it.). I am so sorry to read you have been sick for so long.
I agree that your best bet is to get to an LLMD who is affiliated with ILADS. Do whatever it takes to get there. An LLMD will want to order tests for you, probably at IGeneX. It is a specialty lab that does a better job at finding tick borne diseases than other labs. I was able to get my PCP to authorize tests there as I was so incredibly sick. She didn't know anything about the lab, but she felt really bad for me. She was telling me to go to the ER because I was in so much pain.
I still went to the LLMD, about the same time the test results came in. It was clear that none of the dozen doctors I had seen could help me. I am seeing this really good LLMD now and I am substantially better after 6 weeks of antibiotics. (Note: It turned out I also have a coinfection called Bartonella. It makes the neuro and GI symptoms worse.)
This document was instrumental for me in coming to my own conclusion that I had Lyme.
One more thought.... lyme suppresses the immune system, and many Lyme patients test positive for elevated virus levels that the immune system would normally keep in check, such as EBV, cytomegalovirus, HSV, HPV, and others. Also, many Lyme patients are misdiagnosed with chronic fatigue, fibromyalgia, MS, Lupus, and a variety of other autoimmune or neurological disorders.
Just Google something you experience along with the word Lyme and see what you find. I did this every time I got a new symptom to see if it was consistent with Lyme and to see others' experience with it. I am still doing that as I go theough treatment!
I agree, it sounds like chronic Lyme and one or 2 co-infections. I have bartonella with Lyme and the thyroid, gut problems, EBV etc all fits. I was given an MRI by a non LLMD at the time and was told I have MS. We now know there are Lyme Lesions which are different than MS but unless the radiologist knows the difference, you may be told you have MS. Jackie is right, the LLMD doesnt use the MRI.
Sorry you are sick but if you need us we are here.
I saw an article about a young woman with a severe case of Lyme who also developed Chiari 1 Malformation. She actually needed surgery. Her doctor beIieved that brain swelling from the Lyme infection caused the Chiari Formation. If you google "Lyme Chiari" you'll find other people posting about it.
Apparently some people are born with a Chiari Malformation and are asymptomatic. They find it by accident when they are looking at the brain for another reason. So it isn't clear if Lyme can cause it, or if some people who already have it happen to get Lyme.
Given your history and how you haven't been well since you got Lyme as a kid, it is a good assumption that you have had Lyme all this time. Get thee to an LLMD! ;)
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