Help?

[Jenny Wren]

I just recently had extensive bloodwork done to rule out any other cause to these weird sensations that I have been experiencing for 6 years now.  Bloodwork includes: ESR, ANA, antiphospholipid, SPEP/IPEP, EBV, Metabloic panel, cholesterol, and Lyme (which I know isn't to accurate).  I had a brain MRI in April 06, w/ and w/o contrast, c-spine in Sept 06, and lumbar in October 06.  Everything is normal, except for the bulging disk.  I have been taking Topomax (topamax) for 3 months now, and it has helped alot with the migraines, but not the weird feelings.  I went to a new neuro on Dec 22, she is the one who sent me for the bloodwork.  She was asking me what other bloodwork that I had done before, I told her, she wanted to do some different ones.  She then stated that sometimes a virus can cause these sensations, and that she wanted me to be tested for EBV.  I WAS tested for EBV, 6 years ago when I began to get sick, this was during the 3 months of extreme nausea.  It was only shortly after that the bug crawling sensations started.  She acted suprised and told me that I should have mentioned that to her in the beginning.  She told me that she had seen a few people in the past few months with the same symptoms, she prescibed Metanx.  The Metanx has really helped alot with these feelings. 1.Could my problems be caused by EBV?  2.Should I go ahead and have the LP done?  3.  Why did these feelings get worse when I started taking Prozac? and lastly, 4. Could this be RLS, or maybe BFS? Prozac made everything worse.  Thanks for your time, and have a Happy New Year, too!!

[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.
   I am glad to hear that you migraines are better on the Topamax.  Sometimes, the "weird feelings" can be associated with migraines, but if the migraines are getting better, but the feeling are not they are likely separate disorders.  I do not think EBV has anything to do with the symptoms of "bugs crawling under the skin".  This is not something I have ever heard of with EBV nor can I find any information that suggests this in the literature.  As far as being treated with Metanx, this is odd as well.  Metanx is a vitamin complex (B6, B12 and active Folate), which is not bad for you, but the only thing it treats is low vitamin levels or high homocysteine (neither of which cause bug crawling sensations).  The other causes of bug crawling sensations (also called formication) are psychosis, cocaine/amphetamine use and alcohol withdrawal.  Perhaps you should consult a psychiatrist to see if a trial of risperdal would be indicated (I am not an expert in psychosis, and would depend on their judgement).  The symptoms that you have described do not sound like restless leg syndrome (this is an uncomfortable sensation in the legs, associated with an urge to move them, that is helped by movement and is worse at night).  Benign fasciculation syndrome is possible, but unlikely given your descriptions.  BFS usually involves the slight twitching of muscles all over the body that is repetative (but not associated with creepy crawling sensations that make clothes uncomfortable.  Formication (bugs crawling under the skin) is also a side effect of labetolol (an antihypertensive) in some patients.
I hope this has been helpful.

[JCmcc]

Haven't you posted here before? I thought that you had Lyme disease?

[Jenny Wren]

Yes, I posted here before, I am in the process of elimination.  My next step is a visit to Dr. S in Pa.  I tested negative for Lyme with the Elisa.  This was done just this past April, after 6 years of symptoms.  My only real symptoms is the parathesia. I just seen my OB/GYN today, I'm off to have my hormone levels checked.  Thanks!!!

[JCmcc]

Jenny,
  Your only symptom is parethesias? Have you had an MRI of the c-spine with contrast? As well, where does the parethesias effect you?

[Jenny Wren]

Yes, the only thing that showed was the bulging disk.  I have been taking the Metanx for almost 3 weeks now, the paresthesia has really lessened alot, but still there a little.  I have never experienced numbness, bowel/bladder problems, vision is fine, heat makes me feel better, not typical MS symptoms.  The paresthesia affects me legs, only when sitting, upper back, and face, it has never been on my chest or stomach, and hardly ever below my knees.  Its really weird.  The trigger point injections have helped alot with the facial tingling, and xanax alleviates alot of it also. What do you think?

[JCmcc]

What is metanx? I think that you have cerifiable Lyme disease but that is just a thought.

[Jenny Wren]

Metanx is a medicinal form of B-6, B-12, and Folic Acid.  My neuro says that its potency is higher than a B-12 injection.  When this first started 6 years ago, it was 3 months of nausea, I had all kinds of stomach tests done, nothing showed, then almost as soon as the nausea went away, the bug crawling sensations started.  My husband has had 3 deer ticks removed from him in the past 9 years. I live in PA, so its pretty bad here. When I had the brain MRI done in April, I had a "extensive sinus thickening" the radiologist said, I took 3000 mg of amoxicillin for 2 weeks, then it still wasn't gone, so I took Biaxin also for another 2 weeks, I forget the mgs.  I didn't experience any "herx" though.  I am really confused, but hopefully on my way to finding an answer soon.  Thanks, so, how have you been feeling?

[JCmcc]

39 things you DON'T know about Lyme Disease


Symptoms range from mild to crippling and mimic everything from chronic fatigue to TB - and worse
04/27/06
By STAR-GAZETTE HEALTH EDITOR
Respond to this story
Email this story to a friend


BULL'S EYE RASH: Only three of 10 Lyme patients get the rash, but it is, according to the CDC, the only definitive marker for Lyme.  
GOVERNMENT AGENCIES and cutting-edge researchers agree - Lyme Disease is the "illness with a thousand faces."

"The Great Imitator" ravages patients with at least 39 symptoms that make the infection difficult to diagnose.

The similarity of Lyme symptoms to those caused by lupus, lymphatic cancer, multiple sclerosis, chronic fatigue syndrome, HIV-AIDS, fibromyalgia, depression and other serious illnesses vexes doctors.

Those who haven't kept up with developments in Lyme research often write their patients off as hypochondriacs.

They put them on anti-depressants or send them to see a psychiatrist, claiming Lyme is "rare" and "not in this part of the country," even though skyrocketing numbers of infections have been documented in every state.

Other doctors believe their patients are sick, but refuse to believe they have Lyme.

They order up test after expensive test for AIDS, lupus, cancers, tuberculosis and more, seemingly unaware that the United States is in the tTICKS spread Lyme disease. Growing numbers of experts believe other insects can do the same. Sexual transmission is being seriously discussed as well.  
hroes of a hidden epidemic that may affect as many as 150 million people.

That's the frightening projection from a computer model developed by Lyme specialists in Texas who say it's possible half the population carries latent Lyme that could be triggered at any time by trauma, stress or an unrelated sickness.

Here, from medical journals, newspapers, magazines, and clinical and epidemiological studies, are prime symptoms of the illness. Treatment options follow.

1. Rash at bite site or other sites

2. Muscle twitching of the face or other areas

3. Unexplained fevers, sweats, chills

4. HeadacBEST FOR LYME  
he

5. Fatigue

6. Neck creaks and cracks, neck stiffness

7. Unexplained weight change (loss or gain)

8. Tingling, numbness, burning, stabbing sensations

9. Unexplained hair loss

10 Facial paralysis

11. Swollen glands

12. Eyes/vision: loss of vision, double, blurry, pain, increased floaters



13. Sore throat

14. Ears/hearing: buzzing, ringing, ear pain

15. Testicular pain/pelvic pain

16. Dizziness, poor balance

17. Increased motion sickness

18. Unexplained menstrual irregularity light-headedness, wooziness, difficulty walking

19. Unexplained milk production (lactation)

20. Tremors

21. Irritable bladder or bladder dysfunction

22. Disturbed sleep

23. Sexual dysfunction or loss of libido

24. Confusion, difficulty in thinking

25. Upset stomach or change in bowel function

26. Difficulty with concentration or reading

27. Chest pain or rib soreness

28. Forgetfulness, poor short-term memory

29. Shortness of breath, cough

30. Difficulty with speech

31. Heart palpitations, pulse skips, heart block

32. Joint pain or swelling

33. Mood swings, irritability, depression

34. Stiffness of the joints, neck or back

35. Heart murmur or valve prolapse

36. Muscle pain or cramps

37. Exaggerated or worse hangover from alcohol

38. Rash at bite site or other site

READER ADVISORY: If you have symptoms or think you have Lyme Disease, ask your doctor for a blood test. Testing isn't definitive, but it can help you and your doctor to arrive at a clinical diagnosis and suggest treatment for Lyme.

Pharmaceutical and Herbal Treatment Options

Pharmaceutically, the Centers for Disease Control and other federal agencies make it clear that broad spectrum anti-biotics such as Doxycyline are indicated in the treatment of Lyme.

Herbally, far and away the most requested formulations based on industry surveys and patient interviews are:

1. Japanese Knotweed-Andrographis-based "complex" formulascontaining a range of anti-bacterial, anti-viral and anti-fungal ingredients, including the amino L-Arginine, N-Acetyl Cysteine and Taurine.

2. Samento Extract and Cumanda Extract.

When using herbs, 90- to 100-day regimens are the norm herbally, although longer treatments aren't unheard of.

Anti-biotic treatment will last anywhere from three weeks to several months or even years, depending on variables that include age, length of sickness and also factors that are, to date, unknown.

Long-term oral and intravenous anti-biotics are often necessary to successfully treat stubborn cases of the disease.

Not all patients get well with anti-biotic treatments, which is why many turn to herbal therapies, either for use in conjunction with anti-biotics or alone.

Regardless of the therapy you choose, early diagnosis and aggressive treatment can prevent many of the severe and debilitating complications of Lyme disease, the CDC and Lyme specialists agree.

Additional "home remedy" and self-help techniques have helped Lyme patients get well faster.

Donna Maher, R.N., who has interviewed patients, doctors and others on the front lines of the Lyme epidemic, says successful patients report that they:

1. Drink lots of water: 84 ounces a day filtered or steam distilled.

5. Exercise 30 to 60 minutes a day - working up a sweat if their physical condition allows it.

6. Body-brush morning and night, a process that exfoliates and conditions the skin - the body's "third kidney" - helping with the elimination of dead bacteria and toxins. It's good for circulation, too.

7. Meditate and pray to reduce extreme stress and keep a positive attitude.

8. Eat fresh, whole, living foods while eliminating all the processed food possible.

The self-help techniques are simple, says Maher, and they make good sense. Prayer and meditation, "in almost every case" are a prime therapeutic ingredients, she adds, and Lyme patients are using them "to very good effect."

Star-Gazette Commonsense Advisory: Report is presented for your information and is not to be construed as medical advice. Neither the publisher nor advertisers make any claims that antibiotic prescriptions or herbal supplements will treat or cure Lyme disease. If you are seriously ill or think you might be, consult a qualified health professional before you attempt to diagnose or treat yourself.

Health news that MEANS something - every day in YOUR Star-Gazette, Florida's FASTEST-GROWING Newspaper!

[worried415]

Hi jenny-wren...i have changed my name...i used to be sally456.
I had to stop posting here..it got to be too much.  
anyway, here i am again, because i am so scared.

I knwo i need to get to a neuro, yet i am so scared of being diagnosed and having to tell my family and friends i have ms...
and then trying to cope with it....

if i do have it, which i beleive i do its been mild for 18 years, but i know that is no guarantee it will stay mild.

also, the meds all have side effects, even though they may help with the progression, ther are the side effects and long term effects to consider as well.

Im rambling here...take care of yourself Jenny.

Also, how did you find the courage to get the mris' and spinal tap done?

[Jenny Wren]

Hi Sally, I just spoke to Jeannie the other day, I asked her how you were doing.  I didn't have the LP done yet, my neuro wanted to have all the bloodwork done first.  I go back to see her on the 30th.  I finally decided that I was tired of worrying about this, and if I do have it, I would like to start on meds.  I had the brain MRI in April 06, c-spine in Sept 06, and then just recently the lumbar in Oct 06.  Everything was normal except for a bulging disk in my neck.  My neuro sent for the films she wants to review them herself.  I probably won't know anything about whether she seen anything different than the radiologist until I see her at the end of the month.  She will probably want to do the LP.  I'm sorry that your upset again.  Its hard not to be, when you have these weird things going on all the time, I know.  I have had a ton of bloodwrok done, everything is normal.  I think in the last 3 months they have taken close to 25 tubes of blood for different tests.  I am going to have a neuro scan done also on the 30th, on my face.  I never heard of it, they just said that there are no needles or pain involved, so we'll see. I have to run, gotta go to work.  Talk again soon!!!

[worried415]

Jenny--

about the meds...do they scare you??
I just feel that if i have ms, ive had it for at least 18 years and ive been basically ok..all symptoms are mild.  im afraid that the meds will make me feel sick...
also, injecting yourself is no picnic.....

But like you , i just have to know one way or the other because it will drive you nuts not knowing...i used to think i could just go on and think that ill be ok, but if something does happen where i have to go to the hospital or dr. then ill have to find out then, and thats when ill worry about it.

How are you mentally...? i mean do you worry alot about having it?  and if so, how do you cope and deal with it, so you are not depressed all the time?

thanks...hope to hear from you soon..

[Jenny Wren]

I have not been diagnosed.  I have been feeling alot better since I started taking Metanx, its a b-6, b-12 folic acid vitamin, its better than b-12 injections my neuro said.  The feelings have subsided vy about 75%.  If I do find out some day that I do indeed have it, then I will have to deal with it, and learn to live with it.  What frightens me the most is that I have no prescription coverage, and the injections are very expensive.  Talk again soon!!!!!