Aa
A
A
A
Close
Lyme Disease Community
2.11k Members
2190999 tn?1504992491

Undiagnosed

Hello,

I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe  tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.

In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.

Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of  my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.

Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).

The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.

Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.

For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.

And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.

My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.

Thanks, 
Marell
52 Responses
1763947 tn?1334058919
It is hard for someone not medically trained to give you an answer because it good mean many things. It could fit Lyme and the co-infection bartonella. I think the ringing in the ears I had in the past but have all the other symptoms now. It may be worth going to find a Lyme literate doctor, what we call LLMD which you could find one going to ILADS.org and finding one near where you live. I was misdiagnosed with MS, Lupas and a whole variety of ailments before finding out it was Lyme . Yours may not be so if I were you, knowing what most of us go through, I would find an LLMD and let him lead you and by the way, I never had the circular rash that most people say they get with a tick bite. Go to the neurologist and get copies of all your tests, even the MRI and then go to an LLMD. I had a clean brain MRI and several months later they saw lesions on the brain.
Good luck to you let us know what happens!
2190999 tn?1504992491
Thanks mojogal. I am definitely considering Lyme which is why I have posted here. I will look up the bartonella, haven't heard of that one before. Most of my symptoms have gone or are just very toned down from what they were. Is it typical for Lyme to flare? Or are symptoms usually steady? And what made your doctor rescan your brain only several months later? You mentioned lesions, does Lyme create lesions similar to MS?
Thanks,
Marell
Avatar universal
Welcome -- you are going through a lot!  

I agree with the suggestion to find an LLMD.  There is a split in the medical community about how serious Lyme is, how widespread it is, how to diagnose it, and how to treat it .... pretty much every aspect you can think of.

The most logical group of docs who should treat Lyme are neurologists and infectious disease specialists (since Lyme is a bacterial infection), but sadly these two groups are following diagnostic and treatment procedures set up decade ago when little was known about the special quirks of Lyme.

When Lyme is considered rare and easy to cure, docs don't pay much attention to it -- and especially they don't tend to consider other diseases often carried by the same ticks that need different diagnosis and treatment (called generically 'co-infections').

It is very typical for Lyme to come in waves, or flares, often seasonally (worse in the spring and summer in some of us).

MRIs may show fuzzy spots that could be Lyme, but could be MS, and docs who don't "believe" in Lyme will assume it's MS and not even consider Lyme.  MRI is not therefore useful in differentiating Lyme from MS, and if you have a doc who doesn't believe in Lyme, then the doc may default to a diagnosis of MS.  So, yes, Lyme can create 'lesions' in the brain that look similar on MRI to MS lesions.  But that is not a reason to assume you have MS.

There is another test that Lyme docs use, called a SPECT scan, which instead of indistinct fuzzy spots that could be MS or could be Lyme, instead shows areas of low blood flow in the brain, which does not occur in MS but can occur in Lyme, because Lyme can cause brain swelling.  Swelling means constriction of blood vessels, which then means low blood flow.

A Lyme doc will know from taking your history and asking about your symptoms what tests to order for the different co-infections that often (maybe 50% of the time) come from the "Lyme" ticks.  Bartonella is one, babesiosis and ehrlichiosis are others, and maybe a couple more.  

Lyme won't go away by itself, though it may go underground and not make you feel miserable.  Lyme is a spiral-shaped bacterium in the same family as the bacteria that cause syphilis.  Syphilis, until antibiotics were discovered less than 100 years ago, was a terrible disease that could lead to dementia and death.  Some people live with a low level of these diseases for a long time, but others are strongly affected, perhaps due to genetic differences in each of us and to our own immune system efficiency and effectiveness.

In other words, Lyme is to be taken seriously, and unfortunately much of mainstream medicine is not up to speed on current diagnostic and treatment approaches.  That's why finding a Lyme specialist is critical.
1763947 tn?1334058919
Lyme is known to recycle its symptoms. Before treatment mine did every 4-6 weeks like clock work. Now it's more scattered.
The doctor did anther MRI because I could hardly walk, had big time memory and vision problems. Unless the radiologist knows Lyme, he will think its MS that is why the LLMD has to read it. I also had muscle weakness, I couldn't open the fridge. I was living in another state at the time and saw several doctors, it wasn't until I moved to Fl that I found an LLMD.
Avatar universal
My Lyme mimiced MS, and I also have heat sensitivity, light sensitivity, tinnitus, sore ribs, tachycardia, and lots of GI problems.  I had flare ups or attacks of symptoms every 6-11 months for nearly 5 years.  In between I would recover.  I was thinking I had mono flare ups, because that is the closest thing I could compare it to.  (I had a bad case of mono several yeays earlier.). Now I know that Lyme suppresses the immune system and allows previously controlled viruses and other opportunistic infections to flare up also, complicating symptoms.  I also have Bartonella, which is common when Lyme symptoms are predominantly neuro or gastro.

You'll want a Western Blot test.  The blood screening test is way to unreliable. Even a Western Blot can be false negative, so you need to see the "bands" in your results, or you need to get tested at IGeneX, a specialty lab that does a better job of testing for tick borne diseases.

Google "Tom Grier Lyme" for a scientist's explanation on the flaws of Lyme testing.

Also, this document might be helpful for you.  It was for me.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Keep us posted!
Avatar universal
Question:  when you say to get a W blot bec. the blood screening test is unreliable, what blood screening test is that?
Avatar universal
The CDC two tier testing protocol says to run a screening test, either an ELISA or an IFA first.  Then, only if this is positive, run a Western Blot.  ILADS docs say at least 30% or more of their patients are false negative on the screening test. (That was me.)  Some say up to half.

A Western Blot is more useful as it shows actual antibodies present.  A lab that looks for bands beyond the ones the CDC looks for is crucial, as there are several other bands that show evidence of infection that are ignored by the CDC.  A simple CDC negative result by no means excludes Lyme.  But lots of non-IGeneX WB results can be diagnostically useful if they show other bands.

IGeneX does a better job of finding antibodies in the first place, and then reports everything that is relevant.  They show the CDC result, and then also give their own opinion on whether or not the test shows Lyme infection.

IGeneX will only run a screening test along with a WB.

Of course Lyme patients can also test false negative at IGeneX if they are just not creating enough antibodies to show up on a test.  
Avatar universal
You say above:  "IGeneX does a better job of finding antibodies in the first place, and then reports everything that is relevant.  They show the CDC result, and then also give their own opinion on whether or not the test shows Lyme infection."

Although IgeneX runs the W Blot/ELISA tests if requested (LabCorp also runs these tests), only IgeneX has a PCR (polymerase chain reaction) test which looks for bits of Lyme bacteria DNA and does not rely on the immune system to still be up and producing antibodies, which trail off after a while even tho the infection is still present and active.

That's the advantage of IgeneX -- a completely different kind of test, as I understand it.
Avatar universal
Since your symptoms look like both Lyme and MS, you might consider pursuing both until you have a definitive answer on either one.  It can take years to get a MS dx, so parallel paths makes sense.  

There are some old posts asking about LLMDs in PA, so you might search for those and message the posters for suggestions of doctors.  ILADS is a good source, but actual patient referrals are gold. (There are some docs out there who say they will treat Lyme who don't know what they are doing.) A local patient support group can also be helpful.  Unless a doctor is very public about treating Lyme, we don't put their names here.  Some practice quietly, as not to be harrassed by doctors who don't agree with them.

Did I already give you this link?  If so, sorry for the duplicate.  It talks about Lyme and coinfections and has a good symptom list.  You can also google a symptom with the word Lyme and see what comes up.  I found that helpful for  my strange symptoms.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
Avatar universal
Another thought:  are you taking magnesium (Mg) supplements?  Lyme bacteria use up Mg in their rude little reproductive process, and it is easy to become depleted.  Mg helps carry the electrical impulses from cell to cell in our bodies, telling muscle cells (for example) when to contract etc.  

You can take Epsom salt baths, if that is soothing to you, or you can take capsules.  I take capsules and it makes a huge difference in how I feel.  You know how babies get all floppy after a bottle?  Partly it's the full stomach and the warmth of the milk and being held by mom/dad, but also there's Mg in the milk.  It's a naturally soothing mineral.

I take 400mg twice a day, for a daily total of 800 mg.  I had a doc warn me not to take too much, but I was also told that if I got diarrhea, just back off on the dose a bit.  I'm a real lightweight when it come to any med or beer or anything, so if I can do 800 mg/day, probably most people could too.

I read that any kind (not brand) of Mg that ends in "-ate" is most easily absorbed by the body, like citrate, orotate, aspartate, etc.  I tried several varieties along the way, and the one I like best (that is, have the best effect from) is a brand called Magnesium CAO capsules, which has a blend of citrate, aspartate and orotate (C, A and O).  But different people might have different reactions to what works best.

While some Lyme-related pains and aches are probably due to something other than Mg deficiency, you might give it a whirl and see if it helps.  I ran out recently and before the new shipment came from the vitamin depot, I could really feel the difference ... aching and not at my best generally.

Just a thought!

2190999 tn?1504992491
What a discussion :). Thank you for responses.
Ricobord- Good suggestion about looking into LLMDs in my area. I like to know what to expect, so that seems like the next logical thing to do. I'll check out the link as well.
JackieCalifornia- I hadn't thought about the magnesium yet but it makes sense. Cardiac patients often take magnesium supplements after surgery to help their hearts electrical rhythm.
Avatar universal
I was just about to sign off for the night, and am too sleepy to go back up and re-read to see if this was mentioned or not, but if you follow the two-track method (pursuing Lyme and MS at the same time), be aware that the treatment for MS is steroids, which suppress your immune system, while Lyme is a bacterial infection, which needs your immune system up and fighting.  

It has happened (so people have posted here) that they were misdiagnosed with MS when they really had Lyme, but before that mistake was figured out, they got treated with steroids (a common treatment for MS), which just digs the hole deeper by shutting down your immune system in the face of Lyme (and often other bacterial co-infections.)  

On that cheery note -- good night all!
Have an Answer?
Top Infectious Diseases Answerers
1415174 tn?1453246703
CA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods