I went to my doctor three months ago for a checkup because I started having a lot of numbness and weakness in my legs and hands and was feeling sluggish and tired with the brain cloud. The doctor gave me a clean bill of health; by the way I'm 44 and have rarely been sick (very lucky). In any case the doctor sent me to a neurologist to look at my symptoms. I walked in, the neurologist took one look at the lack of muscles in my hands and told me that I had Muscular Dystrophy, I asked how he could know this without test, he told me that he has seen this a hundred times and its always Muscular Dystrophy, he told me that I need to accept it because in short order I will be in a wheel chair for the rest of my life. Well I got out of there real quick and asked my regular doctor for another referral. It took almost a month to get an appointment with another neurologist, the whole time I was scared to death thinking that I had a genetic disease that my children were going to get.

The second neurologist did an EMG on me and said there's no way you have muscular Dystrophy, he said my nerve conduction was worst then a dead persons and I shouldn't even be able to walk. Then he left the room then came back in and told me that I had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Now mind you this is a very rare disease, He ordered more blood work, an MRI, and a spinal tap, he also ordered an immediate IVIG. The IVIG made me feel much better, the Spinal tap came back normal for high protein levels which should have been a red flag, but not for my doctors, after that he put me on a very, very high dose of Prednisone to shrink inflammation and to partially shut down my immune system, well the prednisone almost killed me, I went from sort of sick to bed ridden, I called him two weeks later and told him I was stopping with the poison (prednisone) He made me feel like I was some kind of wimp for not continuing on, three weeks later I went to see him again to get another IVIG, he told me he wanted me to get a nerve Biopsy to prove CIDP, I told him that my disease didn't seem to be comparable to other CIDP people and I told him that I thought I had a B12 deficiency, he said that he would have flagged that from the start with my initial blood test, I asked him out of curiosity what my B12 level was, and guess what, HE DIDN'T HAVE ANY BLOOD TEST. Well I was pretty mad and went to the lab to get a copy of my blood test taken three months prior and there it was, B12 very low and a positive index for LYME, ``what the heck'' It Recommend the western blot test follow-up. Well I went back to my good ole doctor ready to toss him; I told him to schedule the western blot test for me immediately.

By the way all three doctors I told about an incident a year ago, working in the yard, a big red bump on my leg, my whole leg swollen up and stayed that way for about three weeks, I kept going back to my doctor, the first one and he kept giving my antibiotic shoots and the swelling finally went away. What did they think about that; they thought I was wasting their time telling the story.

Anyway it is now today, I've done a lot of reading on the western blot test and was horrified to find that if you had any inflammatory drugs (remember prednisone, very high dose) them the western blot test would probably show no positives. THIS REALLY MAKES ME MAD!!!

Anyway my test came back abnormal for P41 flagellin on both the IgG and the IgM, the rest was normal.

I trust you more then I will ever trust our medical community, my questions are:

1. If there is flagellin proteins then there must be Lyme? Yes/no
2. Do antibiotics easily cure flagellin?
3. Is my western blot test inaccurate due to the heavy prednisone usage?
4. If I go to heavy antibiotics assuming I have Lymes how long will it take to see any results, good or bad to know its working?
5. Is low B12 a companion to Lyme disease?
6. Should I toss my Neurologist?

By the way he did have his nurse call me today and tell me they are sending me to a Infectious Disease doctor immediately, Would that be the kind of doctor I need to see, I'm in Virginia Beach VA, any recommendations on a Lyme doctor?

Thanks very much
God bless you,

There are several WB bands that are indicitive of lyme and nothing else. I can't remember the numbers, but someone else will. So just one band can mean lyme if it is the right one. Antibiotics are needed to treat lyme. You will need to be tested/treated for co-infections, the blood work just isn't accuate enough on any of this stuff.

I've had positive dna tests and still have had no WB bands so don't worry about it. A good llmd uses bloodwork as a guide and makes a clinical diagnosis. Sounds like your Elisa was positive, that is what triggers the WB in most cases, so let's accume you need to be evaluated by a knowledgable lyme doctor.

I had lots of B vitamin/iron issues when I first got sick. I think those problems ran my immune system down allowing the lyme to take hold. Now that I have those levels up I seem to be getting better.

quote:

---

Originally posted by spitz:

1. If there is flagellin proteins then there must be Lyme? Yes/no
2. Do antibiotics easily cure flagellin?
3. Is my western blot test inaccurate due to the heavy prednisone usage?
4. If I go to heavy antibiotics assuming I have Lymes how long will it take to see any results, good or bad to know its working?
5. Is low B12 a companion to Lyme disease?
6. Should I toss my Neurologist?

Spitz

---

Oh my. I'm so sorry you've been put through the wringer on this. The ignorance of today's drs is mind boggling.

1. Probably
2. flagellin is the tail of the spirochete
3. YES [probably used an inferior lab also]
4. You could know within days because if you "herx" that means you are responding to the antibiotics.
5. Quite a few people with Lyme have this.
6. Absolutely!

And forget about the infectious disease dr too! They are usually complete idiots when it comes to diagnosing Lyme.

You are obviously a very smart person and will find the right answers! I applaud your tenacity!

Post over in Seeking a Doctor for a dr in your area. We call them LLMD's....Lyme Literate MD's.

I'll let others chime in here.

EDITING to change NO to YES for #3. My mistake! Lyme is causing brain dysfunction again!!
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

------------------
oops!
Lymetutu

and the fact that steroids made you much worse are very indicative of Lyme.

BTW neurology docs are more often than not completely unhelpful, at best.

Mel, I think its band 18 thats a Lyme only band. Thanks so much for your reply

lymetoo thanks for all of the great links, I guess I'll have some heavy reading tonight. I agree with you assessment of the steroids, thats why I am so disgusted with my doctor. I have read where people with Lyme disease have died from Steroids.

David, very interesting that you had the 41 band only, also,

I want to get on with the treatment ASAP; I am worried that these people are going to putz around for the next three months trying to decide what to do. I've already lost three months needlessly not to mention the amplified progression of the disease due to the steroids.

Thanks for the answers

quote:

---

Originally posted by spitz:
.... I am worried that these people are going to putz around for the next three months trying to decide what to do.

---

And they will. Find an LLMD ASAP!

I finally went to a LLMD last month. He did a lot of different tests, and the nurse called back a few days later to tell me I had a high mycoplasma infection and I was put on 400 mg of doxy a day. I'm getting the Lyme test results on the 18th.

So, I just wanted to give you some encouragement. It's taken me over 10 years, and numerous diagnosis, but I think I'm finally getting somewhere. I'd really suggest an LLMD like everyone else has suggested. He/she should be able to help.

She wound up with extensive nerve damage and was in a wheel chair for the last 5 years of her life.

She died at 55 from what I now believe were Lyme complications.

6. Should I toss my Neurologist? Most dont really understand lyme you need a llmd.

WELCOME To LYMENET


Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
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A copy of this is stored in computer Help section.

Sorry to hear you went though so much. You are getting great advice here. Neurologists are often really bad doctors to see when you have lyme they misdiagnose like crazy or completely disregard you.

I thought I had CIDP or guillian barre at one point as they can micmic these things.

Glad you found out what;s wrong and good luck with treatment.

Robi, you have mail

Just when I think my I've ended up with all of the bonehead doctors I get a reality check, sarahlea1717 I feel so sorry for you, what a run around I sure hope this pans out for you and you get treated with positive results. By the way if you are treated with antibiotics and the Lyme finally goes away but you are left with some Polyneuropathy IVIG's are a good follow-up to antibiotic treatment.

tikbit I'm very sorry you lost your mom for a treatable situation, I have been taking heavy oral B12 at 16000% RDA twice per day for a week now and feel better from that then anything the doctors have done for me.

James H I would not be surprised
Also my test did not have + or - on it, just absent or present.

treepatrol thanks for the list of need to know stuff, No wonder the participants are so knowledgeable on this board, you have all of the information at your fingertips. Good for you.

lymiecanuck thanks for the kind words,

Thanks to everyone for the great information.

Spitz

Welcome to Lymenet.

After reading your story, I'm still shocked at what goes on in doctors' offices. It's been said "if you listen to the patient long enough, he can tell you what's wrong." I sure do believe that.

Sad to say, your answer was obviously in your history!

Sorry you've been run through the mill.

As for me, the article below is why I persevered in getting a prescription for B12 injections from my LLMD. I've had crispy fried nerves; lots of pain pre-diagnosis. I was sick for 13+ years prior to being diagnosed.

``A Shot in Time Saves Mind''

http://www.mts.net/~baumel/B12.html

Just a FYI:
From reading on Lymenet, a poster said a B12 deficiency (common to lyme) can cause an "EEG pattern practically identical to that seen in bilateral temporal lobe epilepsy."

Thought that was very interesting.

If at all possible, ask your future LLMD for a B12 shot prescription. Try to get "methylcobalamin" B12 form. It will cost more than the regular cyanocabalamin B12. My RX has endless refills.

I get B12 vials & 1 cc insulin syringes at Costco. The insulin needles are very slender & don't hurt if you inject needle into skin fast and hit plunger slowly. (You don't have to be a Costco member to use their pharmacy.)

Personally, I think it's a crime for neuro lyme patients not to at least try B12 injections. It's very calming.

If you were low on a routine B12 blood test, your levels must have bottomed out. That's not even a true test of B12. I'll post another B12 test in my next post in case you ever need it.

I never had the test-----am glad just to get the RX B12. It's usually recommended to take Folic Acid along with your B12.

Anyway, I'm better and you will get better, too.

The March 2005, Life Extension Magazine stated to take larger doses of Folic Acid. It states you can safely take up to 5,000 mcg that's micrograms and not milligrams daily.

B12 & Folic acid are water-soluble and washes out of the body daily.

I buy Folic Acid 800 micrograms (not milligrams) capsules by Solaray; it's cheap. It takes about 3 capsules twice daily to get in a high dose.

Folic acid does many wonderful other things, too.

Be sure & talk to your LLMD about dosages especially for you. Always verify any dosages you read on Lymenet. You can go to

www.lef.org

to read more about high-dose Folic Acid. They have a whole library of almost anything you'd like to research.

Hope you have a good nutritional supplement foundation.

Try to print out Dr. B's Treatment Guidelines & it will have his nutritional recommendations. I think he suggests Pharamanex on the internet.

Go to:
www.ilads.org

and then click on Articles & Presentations in left column. Scroll down to Dr. B's handbook for Lyme Disease - "Treatment Guidelines".

Here's another way to get a sheet of the basic, necessary nutrients and take to Health Food Store.

http://www.drwhitaker.com/c/store_daily_prod_forwar_pop.asp

It gets really expensive to buy everything separate. You can purchase a good multi-vitamin & mineral in capsules at the health food store, but you'll probably have to add other things like: Magnesium Citrate, Folic acid, essential fatty acids, etc.

You'll need a good form of probiotics to avoid diarrhea on antibiotics and enable the colon to absorb the meds & nutrients.

Everyone has to figure out what their own nutritional needs are.

Vitamins & minerals really need to be taken together in harmony to work correctly. If you take half in the morning and half at night, then your body always has something to work on.

Of course, all supplements need to be taken at least 2 hours away from antibiotics. I call it the ``2 Hour Rule''.

If you do decide to take Dr. Whitaker's vitamins---best to request a catalog from them so you can get a $10 coupon.

Also, because his vitamins are very comprehensive, best to start slow and work up. You will probably detoxify a bit during first few days.

His vitamins supply 800 iu of Vitamin E which is pretty high to start off with. High dose vitamin E can raise blood pressure initially; so I'd only do 1 packet daily for a couple of weeks.

The Forward Plus contains 6 capsules of vitamins/minerals; Fatty Acid softgels; and Energy essentials of magnesium & potassium.

It comes in 2 packets per day or you can purchase 3 bottles all for same price. It explains better in catalog or website. It gets real confusing.

His formula contains the LECI-PC35 for the brain and nerves-----good stuff. You can also find at the health food store.

There are other brands out there. Go to vitacost.com; your own favorite discount site; some use www.iherb.com.

There's also Thorne Research (need doctor to order); Nutricology (same as the pricey Allergy Research); Metagenics, Biotics Research and more.

Just research and find what works for you.

Sorry to overload you with more links, but here are my 2 favorite links:

1. It's a 40+ page, detailed, symptom chart that shows how LD affects every body system. You'll probably find yourself in there!

It's complete with peer-reviewed, journal citations. The first part is narrative so go ahead & print it out in its entirety. It was handed out at our Support Group Meeting.

Here's the link below. (Sorry----This link is correct. But today, it says "Site Closed". Hopefully you can access it soon. It's a phenomenal website.)

You'll need to scroll down the page to the SYMPTOMS & click.

http://www.lymeinfo.net/lymefiles.html

2. Lyme - The Basics which our LLMD hands out to new patients. At the back, it lists helpful web sites and a book list, too.

Download this from:

http://www.lymepa.org/Basics2004v4_3.pdf

Keep asking us questions & tell us how we can help.

Best Wishes,
Jan

Text below taken from:
``P.A.T.H. Wellness Manual'' by Eric R. Br, MD.

Dr. Br. is on the Scientific Advisory Board for Life Extension Magazine and performs & interprets BEAM tests (brain electrical activity mapping) in NYC.

[Here's the ``real deal'' test for B12 levels because routine B12 level tests are inaccurate:]

Urinary Methylmalonic Acid: To Detect B-12

"This simple urine test can detect the presence of subtle vitamin B-12 deficiency, a condition which may result in anemia (low blood count) and severe nerve damage.

All patients over the age of 50 should be tested for this condition as well as any patient who has had stomach or intestinal surgery, anemia, depression, confusion or forgetfulness, or difficulty walking.

In addition, any patient who has thyroid disease may be at increased risk. Once detected, vitamin B-12 deficiency is easily treated with monthly injections.

If it goes undetected, this severe condition may progress to cause irreversible damage. Although many other ways to detect vitamin B-12 deficiency (e.g.,homocysteine) exist, measurement of urinary methylmalonic acid is the most accurate.

That is because this particular test adjusts for your own personal need for vitamin B-12. Other tests, such as a simple vitamin B-12 level could be normal while your body still may require additional vitamin B-12 to function properly."

Hope this helps,
Jan

My last Nero, the CIDP one refused to order a b12 shot, he said to take b12 orally for three months and we will check it again, doesn't matter because I will never see him again.

As far as my nutrition goes, I really need to work on that, I've been healthy my whole life so I've always ate whatever. I did Have an ulcer one time I took everything under the sun to get rid of it with no luck, a friend then told me to take oil of Oregano three times a day for a couple of weeks and the ulcer will be gone, I didn't believe him but I tried it, that was 10 years ago and I haven't had a stomach pain since. I read where Oil of Oregano will help with Lyme, what do you think?

On the B12 test, is that a test most doctors will recognize or am I going to get the standard eyes rolling back in the head.

Thanks for all of the terrific sites, I sure appreciate it Jan.

DaveS I agree I need a Lyme doctor, I am over doctors that don't specialize in anything except being a bonehead..
Interesting website

Spitz

Well, you're right. Lyme Disease can be very insidious.

I'm glad you're feeling better on B12. Somebody on the board also uses that liquid sublingual B12 from the health food store (or maybe a drug store??) & likes that, too.

If anyone is even half-interested in B12, I try to tell them how great it's worked for me.

As far as Oregano for Lyme Disease (LD)....,
I vote for getting the initial bacterial load down with antibiotics. But I agree it's a good bacterial fighter.

The more difficult lyme cases or those with extreme symptoms are more likely to have another tick- borne coinfection on board: Babesia, Erlichiosis, Bartonella or a mycoplasma.

I use Oil of Oregano Tablets made by Biotics Research Corp from the health food store. It's best to use "WILD" oregano, but my bottle doesn't list that. Oh, well.

Everybody has their Oregano favs. I like to use it to fight fungus or viruses and take it hours away from antibiotics. If you have LD, some have found it much easier to start on low dose and ramp up slowly. It can cause die-off and make you feel achey.

The first one I took made my gums ache within 2 hours. I've yet to get in one tablet 4 times daily.

As for the special B12 test....,
Yes, your doctor will definitely roll his eyes back. It'd be easier for everyone involved if he'd just write a RX for methylcobalamin & insulin syringes.

Anyway, hope you can find just the right doctor and get just the right treatment. I try to tell folks that leaving this untreated is like leaving syphillis untreated. Scarey to even think about that.

Now...... if we could only convince the American Medical Association of that we wouldn't need Lymenet.

Take Care,
Jan