MS, Lyme, any ideas?

Hi, from an Aussie living in Shanghai China!

4 months ago, returned from Bahrain awoke with weird feeling in my legs and fast heart rate. This cont. for 2 weeks. Then developed stomach cramps and I was dx with Helicobacter Pylori and started triple therapy for 7 days.

1st day of treatment and twitching started in my left calf and  2 days later to my arms. I then went to Australia for R & R and some more tests. Full Bloodwork was fine. On last days of the treatment and for a couple of weeks following I had whole body muscle twitches, very high blood pressure, myclonic jerks, drenching night sweats, tingling throughout whole body.

MRI Brain - Normal
Adrenal Tests - Normal
EMG+Nerve conduction - Normal
Gastroscopy - Dueodenal Ulcer

Treated for anxiety, 20 days later had 1 day of no symptoms, so had a beer (Aussie tradition), only anxiety!

Next day symptoms started building again and until now have had-
Whole body/facial muscle twitches - irregular and inconsistent
strange cracking creaking noises in neck throat
Whole digestive system feels wrong
Strange eczema looking rash develop on my stomach
Some eye pain + increased floaters
parathesias in eyes, cheeks, nose, makes eyelids dry
occassional tinnitus
strange new headaches which radiate from my neck
transient muscle and joint pain
1 time intense testicular pain
1 time shock like jaw pain
1 time heart palpatations, 120 heart rate(watching TV)

Now in China, Lyme testing not possible. Started Doxycycline?

MRI Cervical spine - Normal

1 doc said maybe MS, but not able to diagnose!

Any ideas

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  The symptoms you describe are most consistent with Lyme disease, or another encephalitis (likely viral).  If testing is limited the right thing to do is to start antibiotics, but I would recommend a 3 weeks of IV rocephin from the symptoms you decribe.  Ceftriaxone (Rocephin) has good central nervous system (CNS) penetration and thus would be my drug of choice.  
   Even with state of the art laboratories, diagnosing Lyme is not easy.  The agent that causes Lyme, Borrelia burgdorferi, is immunosuppressive and results can come back falsely negative until treatment is started.  The Borrelia can also hide intracelluarly and does not turn over rapidly, making genetic tests such as PCR, also have a low yeild.  The best test is Western blot for Borrelia burgdorferi protiens.
   Given your normal MRI of the brain and cervical spine, makes Multiple sclerosis less likely.  A SPECT scan of your brain would be helpful to evaluate for CNS vasocontrictive disease that causes many of the strange symptoms of Lyme that do not show up on MRI.
  I would also suggest a lumbar puncture (spinal tap) to look for other infections (viral encephalitis panel).  Your neurologist will be able to choose a panel appropriate for your region, but I would include herpes simplex virus, west nile, St. Louis/Lacross/Equine,etc.
I hope this has been helpful.

[PED]

I'm quite interested to hear the response also.

Over the past 9 months I have had a myriad of symptoms and diagnosis, and tests.

Severe Stomach problems, gerd, pain, bloating, felt like gall stones - treated with prilosec, no response.  Disappeared after a short dose of antibiotics for another bug.  No more prilosec, no more problems (march-may of this year)

pains in my upper chest, lats and back to the point of going to the ER for heart problems - cleared of everything, pains have moved on (Dec 05-Feb 06)

Severe anxiety (first major symptoms I had) sept 05 - May 06, treated with Xanax, no help at all other than a pain getting off xanax.

Various shooting pains in my arms, chest, and legs - more or less gone now.

The latest - This crippling jaw pain that comes and goes throughout my face, sometimes numbness on the left side of my face and problems in my trap muscles and shoulders.  More left than right, but both.  

That combined with PVC's - both came on around June, got real bad, now are just a constant pain.  I wake up feeling OK, and it gets worse every stinking day.

I've had stress tests, echos, 64 slice CT's on my heart, brain MRI for MS.

Everything comes back clean.

Anxiety is blamed, but those drugs do not help.

I've pulled ticks off me in the past as I do lots in the woods.

FRUSTRATING as hell.  

It's either severe neuromuscular in my neck, and jaw with hormones causing PVC's, or something else.

I can exercise for hours without chest pain.

Passed a basic Lyme titer back in February of this year.

[richardbri]

Thanks for all the info. I began getting sick April 2005. I started with an episode of vertigo, 2 weeks later I began getting dizzy, nausea, and headache all the time and hasnt stopped ever since. This May 2006 I began having muscle fasiculations. Needless to say all my lab test have come back negative including 2 MRI's and CSF. So I told my dr I wanted to send my blood over to Igenex for testing after 3 Kaiser Lyme test(titer) came back negative, Guess what?? I came back positive for Igm western blot on 23-25kda and 31 and 34kda. On IGG WB I came back positive on 34kda and positive (++++) on 41kda. My Kaiser Dr. still doesnt beleive that it can be Lyme because I live in East Los Angeles, Ca. But before I got sick I had been to Big Bear mountains, and 2 trips to Mexico not ever being aware of what Lyme disease was or what to watch out for. So they wouldnt treat me for it. Now I have been going to a Lyme literate Dr and he immediately started me on Amoxicillan, its been a month and I still dont feel OK. My symptoms have gotten worse. Fasicultaions have turned into twiching from head to toe 24 hours/day. He now wants to put me on IV antibiotics for a few months. In your opinion, Can this really be Lyme Disease?? Im still scared that it might be MS. I have been dizzy and many other MS like symptoms for over 1 1/2 years. Anyone else experiencing the same....??
Please help.....Richard

[lat67]

Hi Guys,

Well I had to respond as I have many of these symptoms as well.  My long story short is I was totally convinced I had MS.  I have had MRI's of neck back and brain done...totally clear.., evocked response test, EMG test and even a lumbar puncture ...all came back totally negative.  MS has been ruled out by two neuroligists and every other doctor was at a total loss.  I then checked into Lyme...tested with Igenex and found an LLMD to treat me.  I was diagnosed with stage three lyme and am now being treated with antibiotics.  My symtoms (symptoms) are verything from numbness and tingling in my feet , hands and face, tons of muscle twitching, jerking, total fatigue , dizzyness etc.  Before all this I was training for a half marathon and very active.

I wish i had not wasted any time in being diagnosed with lyme and not spent so much time worrying about MS.  At any rate if you have any questions feel free to email me at ***@****...

lesley

[richardbri]

Hi All,
   Thanks for replying. I was barely able to work before I started the antibiotics because of all my symptoms. Now that I have been on the Antibiotics for 4 weeks I had to take medical leave last week because I am not feeling well at all. Sometimes I feel like Im going to die. The LLMD told me to expect to feel horrible for a while. He even told me to back off on the antibiotics a little bit, but I have countinued with the same doseage. I want to beat this bug. I think he is going to put me on IV rocephin next week. I had a stomach emptying test done and it found that half of my stomach was working and the other half was paralyzed. Doesnt this sound like a gastric palsy? Anyhow, I used to be a runner, now I cant help wonder if the running helped spread the bacteria to the four corners of my body before I became ill....

[jmomtotc]

Hi, I have had all the symptoms and more for over a year now. Had tons of bloodwork all normal.  Was told it was anxiety medication didnt help.  Did my own research and asked dr questions about lyme disease.  I was told there is no lyme in this area ( interior british columbia) but he did blood test anyway.  Came back negative.  Went to lyme literate doctor and did tests for other tick borne diseases.  Tested positive for rocky mountain spotted fever.  The lyme literate doctor said if you test for numerous tick borne diseases and one comes back positive it proves you've been bitten at some point and the tests for lyme are so unreliable he recommended I start treatment.  I see him again tomorrow for a trial of antibiotic treatment.  I am a little bit hesitant because I am not sure if I can believe I have lyme.  I do not remember being bitten by a tick but at this point I am willing to try anything.  Interesting comment about the little red spots.  I have them all over-just pinprick sized not raised.  Has anyone on this forum who has lyme had swollen but not tender lymph nodes.  mine have been swollen for a year but doc does not think they are anything to worry about.  Good luck with your diagnosis.  Make sure you check into lyme.  It seems there are many people out there with the same symptoms.

[caregiver222]

Impossible to tell. Seven days of tripple therapy will not get rid of helibactor pylori. Try 21 days at a minimum. Seven days will get you a tripple anti-biotic resistant helibactor pylori infection. Then you run out of anti-biotics to select from. The cyclosporins, particuliarly Levaquin, are devastating and damage all life processes. You certainly could have Lyme disease. That disease is a bear and difficult to eradicate. You only seem to get remissions. I would take a stab at phage therapy and a "phage coctail". Do a google search. I once had the pleasure of a conversation with Dr. Watson (The nobel prize winner), who started his research in phages (which are alternatives to antibioptics) and believed they might be the next frontier. Mostly they are available in Russia, unfortunately. This contribution isn't much help, unfortunately. Try to keep your immune system up.

[lat67]

Hi,

I read your post and just wanted to give you my personal opinion.  I am guessing you were treated by Dr. M in Vancouver.  That is who is treating me.  I live in NB.  When all this started I had really swollen Glands that lasted about two months.  This is very commomn at the start of a Lyme infection.  At no point did I see a tick bite or bullseye rash. I have had every test possible done for MS with everyone of them being totally clear.  It took me a while to except the lyme disease dx but I am now convinced it is what I have.  I have been on treatment for close to two months and I feel I am making slow but steady progress.
Good luck with everything.  If you have any questions feel free to email me at ***@****.

Lesley

[tiff423]

Hi!

I have Lyme also.  I take an ABX combo of Augmentin XR and Biaxin XL, and will be adding Flagyl in next week.  If anything can bring out Lyme, it's Flagyl.  I used to take Amoxil and Minocin, but just switched to the others above.  

To the ones who mentioned that their symptoms have worsened on ABX (antibiotics) this is called a "herx".  Has your DR spoke w/you about this?  As the Lyme is being killed off in the body, your symptoms will increase or you may even develop new symptoms, all of this is called herxing.  Also, make sure you are taking probiotics when on your antibiotics.  

For lots of helpful info on Lyme, go to www.lymenet.com  click on flash discussions, which will bring you into the forums.  Anything you want to know about Lyme is in those forums. They are vitally helpful.  

Also, FYI, Lyme is very often misdiagnosed as MS.  Make sure you get to a Lyme Literate DR.

Hope all of you will visit the website I mentioned above.  It has helped me understand my disease tremendously.  Good luck to you all.

-Tiff

[ABBY2005]

I TOO HAD DIAGNOSIS OF LYME TREATED WITH AMOXICILLIN DIDN'T GET BETTER TESTED FOR ERHLICIOSIS  NOW TREATED WITH CEFTIN FOR THE LYME AND DOXY FOR THE ERHLICIOSIS.  ALL KINDS OF DIFFERENT SYMPTOMS THOUGHT I WAS OUT OF MY MIND. NOW ONE WEEK INTO THE TRESTMENT FOR ERHLICIOSIS AND 3 WEEKS INTO THE TREATMNT FOR LYME I FEEL GREAT.  BOTH DISEASES ARE SO OFTEN MISSED BECAUSE THE SYMPTOMS OF LYME SEEM TO BE ANYTHING YOU CAN THINK OF INCLUDING WHITE DOTS ON THE BRAIN.

[ladybiker]

I've been on Cipro for about 9 days for a sore throat.  In reading all the threads on Lyme, I have continued to wonder if that is what I have.  On Monday I will see an "internist" and hopefully they will test me.  In reading all the forums on the Lyme I have every symptom everyone describes, and it is absolutely horrible.  The 24 hours of muscle spasms and thinking I have something really horrible, and am so scared.  I'm even being seen by a cardiologist, as the stress has caused palpitations, etc.  I am having the nuclear stress test and echogram, or whatever it is called on Friday.

The neurologist I saw only wanted to load me up on things such as Topomax (topamax), with no testing at all.  

What I'm wondering is -- is Cipro also effective in treating Lyme.  I am allergic to almost every antibiotic, and it amazes me that so many people can take so many different antibiotics for such a long length of time.

Problem is I only had a 10 day dose, as was being treated for sore throat -- but was hoping in the course maybe it would work against Lyme if I had it.