Is there a Dr. House here? My Story...
 

I'll try to keep this as suscinct as possible:

* Exposed to Hep B last year. Given HBIG Hep B postexposure prophylaxis shot to prevent infection.
* Given Hep B vaccine - 3 shots finished Feb 2012.
* Exposed to HIV Feb 2012 (dont ask).
* Given powerful toxic post-exposure prophylaxis pills to prevent HIV infection (AZT/Kaletra/Zidovudine) for 30 days. (it worked).
* After completing meds, when not well rested, fatigue attacks.
* Instant weakness and chills that flow over me, especially in the legs.
* Lasts a few hours to a few days.
* Upon getting good sleep - completely gone the next morning.

This would repeat every few weeks for a handful of months.
Blood tests showed all normal with minor imbalances of poor red blood cell production, but barely out of range so docs not concerned.
ANA, thyroid, etc all normal. Epsein Barr: Positive for past infection
Cat Scratch: Positive past infection.

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July:

* Bouts of weakness stopped as sufficient rest was occurring.
* Hangover recovery very poor. Minimum 3-4 days until felt better.

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September:

* Found swollen painful gland in groin. No other symptoms.
* 4 days later flu-like symptoms. Low grade fever (100). Spine pain/aching between shoulders, up neck.
* Profuse sweating during the daytime, during inactivity.
* Put on Augmentin 875 due to lack of visible herpes lesions. Assumed bacterial.
* Felt better in a couple days.
* Back/spine aching returned. Felt like crap. Assumed it was the Augmentin. Quit early at 8 of 10 days.
* Felt immediately better.
* Candida overgrowth? Intense gas (every 30 seconds) for a couple days. Burning eyes, itching skin, burning lips.
* Burning eyes, bad Gas, burning lips, itchy skin, and redness appeared in corner of mouth. No sensation unless pressed. No lesion or fluid filled. Went away with gas 2 days later. Assumed candida related.

* Changed diet to eliminate sugars, sodium, caffeine etc. Started probiotics.
* Felt better few days later.

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Mid Sept:

* Continued new diet of zero sugar, salt, and caffeine.
* Increased water intake to 1 gallon a day, working out hard.
* Reduced supplements to 1 multivitamin and nothing else.
* Solid breakfast, but only eggwhites all day, maybe chicken salad at night. Protein shake.
* Lost my minor belly, began heavy ab workouts. Looking great. Dropped body fat fast with sugar block.
* Developed migraines that would appear every evening at 8pm.
* Migraines at night lasted a solid week and a half.

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Current:

* 14 days ago: Left finger begins twitching. Then left arm muscle.
* Top of left foot goes numb. Pins and needles followed by "cool" washing over feeling from knee down for a half hour.
* Discomfort walking on left foot lasts a couple days.
* Twitching spreads to minor fasculations all over body. Arms, above ears, legs, back of calves.
* Even laying down on pillow, would hear vibration like moth in ear - muscle spasms around eardrum.
* Bodywide twitching continues for 12 days.
* Decide to drop the diet and start taking sodium in again.
Electrolytes. Had a foot long subway and the twitching stopped all day. First time.
* Twitching/spasms Returned at bed time.

Tested for magnesium, glucose, electrolytes - all normal. Probably should have tested before fixing diet. Blood glucose was slightly elevated (100) but i had just drank a Gatorade ...

* Continued new diet and electrolyte and magnesium potassium supplementation.
* Twitching noticeably worse even with 1 hour less sleep.
* If fully rested, twitching bad in the morning - with cessation from noon till 8pm.
* Twitching return at night.
* Any physical exertion / exercise brings them back.
* Neuropathy in foot seemed to progress a little.
* Developed severe sensitivity to temperature in hands and feet.
* Couldn’t drive as left foot felt swollen and blisteringly hot. Needed to take off shoes.
* Holding cold water bottle with hands felt like they were touching an ice cube. Fingers bright red after.
* Continued spine aching between shoulder blades is only other symptom.

Tested for Lyme ELISA - came back positive. Went to Urgent care - given Doxycycline assuming Neuro Lyme symptoms.

* Within 5 days on Doxy, neuropathy symptoms seemed to reduce. Twitching seems to reduce. No loger twitch like crazy when laying down to bed. Still have it in the morning however. Breaks during the day.
* Increase in arthritic symptoms after starting doxy. Painful joints, knee, fingers, neck. Unable to drive car as finger joints hurt when steering. Cant turn neck All transient, goes away within several hours, goes to another joint.
* Lyme proponents telling me this is "Herxing" symptoms of die off...
* Eating right, supplementing, and resting a lot.
* Continued aching in spine between shoulder blades.

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Oct 1: Current

Western Blot Lyme - only one band positive (28 IGG). CDC calls this a negative.

* 7 days on Doxy - twitching continuing to decrease.
* Neuropathy gone. But returned today while walking around store.
* Temperature sensitivity is less.
* Joint issues continuing but seem less.

* Have lost over 14lbs since Sept 1.
* Lack of sugar in diet? No idea ...
* Wasn’t fat in the first place. Went from 36 waist to 32 in three weeks.

Brain MRI scheduled for Tuesday
Spine CT scheduled for Tuesday
EMG scheduled for Thursday

Depressed. Confused. Im 38 years old. I exercise 3-4 times a week. I eat right (to the point that people make fun of me) with periodic binges on pizza and oreos. Dropped all sugar. Dont understand the 15lbs of weight loss in 1 month. Im 6ft was 198, now I am 183. No explanation. Haven't stopped eating. First worried it was primary herpes neuropathy, then thought about ALS but dont have marked weakness in limbs. Then thought it was benign fasciulation sydrome (BFS), then Lyme because of the positive Elisa, then Not lyme because of the negative Western Blot, then maybe Diabetes, but bodywide twitching unusual at this stage. Really at a loss. ....

Welcome to NeuroTalk:
(NOT Dr. House, however)

Well with all that, let's do basics:

1) Get some Lifeway Kefir and drink 6-8oz a day for 2 months or so. I bet you'll love it and it will fix quite a bit for you.
Antibiotics, and nasty things in the GI tract etc.
http://www.lifeway.net/Products.aspx
This is delicious, and not expensive and far better than most
probiotics. 12 strains of different bacteria to recolonize your GI tract after the antibiotics.

2) get a quality magnesium product, a chelate. Do not use Oxide form as it is not absorbed. Blood work for magnesium is not useful unless it is very very low or very very high. In between...is no man's land as far as if you need it etc. Serum testing is next to useless for the midrange results. Intracellular testing is more accurate...such as SpectraCell.
Most whole foods that are high in magnesium, people do not eat in the US commonly.
Here is a website to see what you are actually consuming:
http://nutritiondata.self.com/
Pay attention to serving sizes.
Aim for 200mg elemental daily to start. Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Get a B12 test and Vit D test, and come back here with the numerical results. Most doctors do not interpret the results accurately, and labs will report very low B12 as "normal". So you should come back here with the results.

Muscle twitching is common during low blood sugar times. Also common when magnesium is not optimum.
I've seen figures that claim 70% of HYPOglycemic people have twitches during the low sugar times.

Binging on Oreos? Lots of sugar there! Craving perhaps, because you are actually having lots of lows during the day?
You can have a small snack with some protein, before bed and see if morning twitching is less. That would be an answer for you of sorts.
I prefer Zone Perfect bars, as the protein content is balanced with carbs in those. 1/2 bar is often enough.

When you say --- some red cell production problems? What test showed that? Are you anemic or borderline? Do you have test results to share? Say, MCV from your blood work would tell me something.

If you have serious Candida issues, you will have lots of odd nerve pains/etc, because the aldehydes released by Candida into the blood stream are irritating. Candida may improve with Kefir. If not, there are blood tests for it now, and you may need Nystatin oral suspension to get a handle on it so you can squelch it with the Kefir better. But the Kefir may do the trick, as it is very very good.

Have not had excess sugar in weeks. Dropped it (oreos and pizza and sodas) around Sept 1. Twitching started well after that. :(

Only out of range Blood test results:

(recent)
Glucose: 100 - High (65-99)
Potassium: 5.4 - High (3.5-5.3)
AST: 41 - High (10-40)
ALT: 57 - Normal High (9-60)

(past) During fatigue weakness bouts
Lymphocytes: 21% - Low (22-47)
Neuts: 70% - High (36-68)
MCH: 34.3 - High (27-34)
RDW: 17.1 - High (11.7-15)

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Recent in range results:

CBC - all in range
Urea, Creatinine - in range
Sodium - in range
Magnesium - 2.3 (1.5-2.5)
Electrolytes, protein, calcium, albumin, globulin - all in range.

TSH + Free T4 - in range
Vitamin B12 834 (211-946) - this with zero supplementation
Folate (Folic Acid) 19 (>3)
Creatine Kinase Total: 96 (24-204)
Creatine Kinase MB: 1.2 (0-5)

Lyme Antibody IGG/IGM Total: 1.57 - High (0-0.9)
Lyme Quant IGM: 1.97 - High (0-0.9)

Lyme Western Blot: Negative on all bands except 28 which is nonspecific to Lyme bacteria.

Second Magnesium test run: 2.2 (1.6-2.6)
Trriodothyronine Free Serum: 3 (2-4.4)

HIV Antibodies: Non Reactive
RPR Syphillis w Reflex titer and confirmatory testing: Non-Reactive

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Been on heavy Magnesium supps for 10 of the 15 days of muscle twitching. It has reduced noticeably but comes in spurts still. Forehead. Calves. Fingers. Thigh. Popcorn pops....

Did probiotic recovery supplementation after the Sept 1 antibiotics. Recovered from that already. Still entertaining the possibility I had a primary herpes infection and its causing this. That red bump on my lip is indicative, but they dont usually just go away 48 hours later. Anything is possible.

Dropped all extra sugars back Sept 1. Havent had oreos or pizza in well over a month. Aside from those products which contain sugar that I can't control, I've eliminated it and already gone through the withdrawals. Soda tastes like candy sludge to me now. Too sweet.

I am still on the Doxycycline 400mg daily because it is the proper treatment for Neuro Lyme if you can't get IV Cephtriaxone, so I am heavy on the Kefir milk and refrigerated probiotics to prevent issues. Also have some diflucan coming in the mail just in case. Doctor will reject Lyme as possibility with western blot. He did order Lyme PCR however.

That covers all your questions. I just went to the store and it was uncomfortable walking. I am thankful that I caught this quickly and am researching all possibilities fast. If I identify the problem maybe i can reverse it before it gets bad. Most of this is just "discomfort" at this stage. I am only exactly 17 days into this since my first twitch.

Really dont know where to start with all this.

As a side note you should be aware that the HIV medications I was put on directly destroy mitochondria I believe. Search terms like:

Kaletra AZT mitochondria and MS

Zidovudine combivir mitochondria

Its ever since those meds that i've had this problem. But I also got Hep B vaccine which is heavily tied to development of MS ... and that too was this year.

CoQ10 therapy for me maybe?

400mg/day of doxy is a high dose. It has to be affecting your GI flora.
So keep on the Kefir.

Doxy is also an anti-inflammatory and is used to treat non-infective prostatitis, and some forms of arthritis, acne, carpal tunnel and various other rheumatic issues.

With time, Doxy will disrupt and affect many vitamin nutrient profiles. Short term, less so. B-complex, Vit K, iron, biotin, calcium, magnesium and inositol. It may be early days for you yet about this aspect.

Igenex is the most thorough lab for Lyme.
you might want to look into the testing there:
http://igenex.com/Website/

Assuming vitamins are in check (im seriously on top of them, you should see my kitchen counter) and probiotics are in check .... the slight neuropathy and twitching are unrelated to the Doxy .... so I dont know where to begin.

Of course, you can do the mito supplements. They are more expensive than some others. But a month on the drugs? That is not long.

Acetyl Carnitine would be the primary one to try... 500mg a day in 2 divided doses, increase to 2000mg a day if necessary slowly.

I'd rather you do the obvious stuff first. Then move on to the mito supports. This way you might improve...and not need more.

The vaccines are problematic, over the long haul. HepB has a checkered past with triggering autoimmune disorders. But do the obvious things first. The muscle twitches, are really common when blood sugar is LOW. Liver damage would prevent gluconeogenesis during lows... low cortisol the same. It can get really complicated. So start slowly ..and I know you are frustrated, etc, and that is hard to reign in. But starting slow is best.

Low D will also impact muscle and nerve pain, so get that tested. Most Americans are quite low in Vit D. I'd cut back on working out to a more modest type that is less stressful. Let your body guide you in this. It is easy to do "what you think you should do based on the media, etc" but it might help to be more modest in working out. You can still do some, just not so much.

BTW... your potassium may be reading close to high because the sample was not handled correctly.

Factitious highs in potassium are common, when red blood cells burst and release the potassium into the serum.

Typically you need a retest with instructions to handle the sample properly. Even using a butterfly needle may do it...or a too tight tourniquet.

I had a high red blood cell count on one of my tests around Sept 1.

And I not only had the Hep B vaccine, I had the Hep B immunoglobulin shot directly into my body (Hep B HBIG). So I dont know if that doubles/triples my chance of problems or not.

One thing is for sure, when the twitching started, I had under my belt 3 weeks of zero sugar, zero caffeine, and zero sodium (outside of what is in salt free, fat free, sugar reduced foods). And a gallon of water a day.

However the doctor said that would not have had bodywide twitching going every 10 seconds in places all over my body lasting days and days and days after correcting my diet.

He also said the discomfort, swelling feeling, heat, pins n needles, and sensation of numbness in my feet would not still be happening.

So he's doing the MRI on Brain and CT on Spine. I assume to look for MS.

Regarding the HIV meds, it was a very bad experience. Had a hypersensitive reaction to them. Broke out in a bodywide rash within the first 7 days. This is common for some people. There's an effect they cause called Immune Reconstitution Syndrome. This is where the medications can cause a strengthening and hyperactivity of the immune system. Typically this is experienced by immunocompromised individuals on the meds, but I was a healthy individual on them. This may or may not be related to all my issues but I was FINE before those drugs and have been a mess since. (keeping in mind the Hep B vaccine was at the same time).

While in the meds I had severe skin burning sensations all over my chest and shoulders and arms and legs. Armpits and elbows and knees - anywhere my skin bent, I had burning and irritation for weeks and weeks. It felt like my entire body was enflamed, but I had to keep taking the meds, 10 pills a day for 28 days.

They stop red blood cell production as well. My face went pale white for a long period of time, then after stopping the meds I had a reflex reaction that was severe. About a week after, face went very red, flushing, and this crippling fatigue and nausea. Needless to say that was my sign that the meds had not worked, and I was experiencing Acute HIV symptoms. I literally was drenched in sweat and on an airplane to be with family that afternoon.

A week later my fatigue continued, as did my enflamed armpits and groin and "crevices". But a PCR RNA test (sensitive to 14 days) came back negative. I went to the doctor and he ran a battery of tests on me, finding the abnormal MCH etc i listed above. Positive for previous Mono infection, etc. But nothing else out of the ordinary.

From that point forward I have had ongoing problems, as described in my first post.

I can't work out at this point. I haven't in over 2 weeks. The minute I use a muscle, it ends up twitching for the remainder of the day into the next day. I have now lost 15lbs and most of my gains in the gym, but that could be due to cutting sugar out completely a month ago. I tried working out full body last week, and felt AMAZING after (very light weight). But paid the price. My twitching had almost stopped. But it came back with a vengeance as my muscles were newly agitated. I ended up twitching worse than ever for 2 solid days after that. So I have not worked out at all.

So confused and frustrated right now. As I type this and my hair is wiggling back and forth due to a fasculation under my scalp ....

Hello - again.

I appreciate all your thoughtful replies. I realize this will be an ongoing process of exploration. Unfortunately.

I wanted to clarify - I have only been on the doxycycine for 5 days. It was begun after the positive lyme antibody test.

But this was well after the twitching began and after the neuropathy began developing in my feet and hands.

The high doxy will immediately impact your bowel functions. That is a quick result. The effects on vitamins and minerals will come with time, as I said earlier. So doing the Kefir daily will be helpful for you. You have to space it around your doses, for best results. Doxy is supposed to be better with calcium interaction but it is best to space them out anyway, just to be sure.

A high red cell count could be a result of dehydration before the test. Sometimes people don't drink enough water when getting blood work, esp if it is fasting. Males sometimes have higher red blood cell counts, athletes, or people who smoke or live at higher altitudes. There are rare conditions that result in higher RBC's, but your doctor would cover that I would expect.

Autoimmune reactions do come from vaccine exposures. I believe the MS connection has been diluted over the years. I've seen studies showing no connection with time. But that vaccine is problematic for some people, as all vaccines can be. You can Google that at your leisure.

The mito support nutrients are acetyl carnitine (also for HIV drug exposure), CoQ-10,R- Lipoic acid and biotin.
All are pricey except for the biotin which should be spaced away from the lipoic. Using R-lipoic acid "stabilized" is preferred because it allows for lower dosing and better absorption.
Choose a good type of CoQ-10 like Q-Gel from Epic4Health or Qunol brand which are highly water solubilized and you can get by with 100mg a day of that too. Otherwise it would be 300mg of the older type of softgel.

None of these have serious side effects except on your wallet.
Benfotiamine which is an improved form of B1 thiamine, helps with carb metabolism, diabetes or impaired glucose utilization, and perhaps supports the aldehyde elimination if you have Candida flooding your system with byproducts of its growth and metabolism. 300mg a day to start is a typical dose. I find Doctor's Best very good and affordable for benfotiamine, and R-Lipoic Acid Stabilized. NOW brand also has affordable acetyl carnitine-- it is a quality company too. Buying online will save you alot of money. iherb.com, and Amazon can be up to 50% savings compared to local stores.

You may need some Omega-3 support and since you don't eat egg yolks you are not getting the choline you need to fix cell membranes.
Omega-3's like fish oil/krill oil help repair neurons' axons myelin.
So if you don't get omega-3's in you food, you can add them in. They may speed healing for you. Choline is very critical for the brain, and you need to look into that perhaps more so than others here, because you don't get it from egg yolks. Eggs are THE best source of choline we have today. There are supplements, for this. If you Google you'll find them. Some are pricey too.

Edit to add: I found a pretty good overview of HepB vaccine injury potential:
http://www.vaccineinjury.info/hepati...ccination.html

Yeah im pretty much screwed.

And having had mono several years back as well ....

MS is going to be my diagnosis. And i havent even met a girl yet or settled down.

Its over. :(

I strongly suggest doing the "Igenex" Western Blot to test for Lyme. Also, the newest player on the block is "Advance Dignostics" located at:


www.advanced-lab.com/


who have developed a very-effective Lyme culture test (this is a breakthrough in Lyme testing vs. older and often inaccurate antibody tests). I strongly recommend doing this test as well, and please post your test results here!!

The fact that the very insensitive ELISA test was actually positive for Lyme means you almost certainly have it (along with all your classic Lyme symptoms).

If you do have Lyme (and I would bet money that it is a player) then you need to find a "Lyme-literate" physician ASAP (go to the ILADS website).

Hope you feel better!

David