LymeNet Flash: ID Dr said not a symptom

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Posted by Stephanie (Member # 5941) on :

I went to a well known infectious disease Dr who specializes in Lyme with symptoms of widespread 24/7 muscle twitches (fasiculations - confirmed by EMG). I also have occasional severe migratory joint pain. He said in 30 years he has never seen muscle twitches as a symptom and since my migratory joint pain lasts for only one minute at most that it could not be a Lyme symptom. Does anyone know for certain that this is true or not?

Posted by duke77 (Member # 5051) on :

Sounds like another duck to me. Stay away from RA docs and ID docs. Muscle twitching not a lyme symptom what an idiot.

Posted by troutscout (Member # 3121) on :

THere is ONLY one Lyme Infectious Disease Doctor on the East Coast...and, this doesn't sound like him.

My dear....every Duck on the East Coast will say they are an expert on Lyme.

ID-iots are in the same class as Rhumatologist's.....they quack loader than heck.

Please....only see LLMD's that belong ewihter ti ILADS or are referred to you by a Lyment member.

It will save you a LOT of heart ache.

Trout

PS......your symptoms sound like a bunch of Lymies I know...my muscles twitched EVERYWHERE.....duh.

Posted by tabbytamer (Member # 3159) on :

ID doc? Doesn't that stand for "idiot duck"?

Sorry for the strong language, but don't these "doctors" have any inclination to stay up on their "specialty"?

Recently I had a follow up with my Neurologist. Hadn't seen him in two years--since before my Lyme diagnosis.

He said Lyme doesn't happen in California and that despite three docs confirming my Lyme, I should see an ID.

Give me a break! If he'd check with the State Health Dept., he would see that infected ticks have been found in an overwhelming majority of California's counties.

Hang in there Stephanie.

Posted by SC (Member # 5767) on :

I agree with everyone else.

This so called Lyme specialist is a quacking DUCK!

Muscle twitches are symptomatic of Lyme and there are no rules about how long the pain lasts.

You need to find a REAL LLMD!

[This message has been edited by SC (edited 24 July 2004).]

Posted by crmc (Member # 4207) on :

I do not know what the medical community considers to be "true". But I can tell you what I KNOW is true:

I had muscle twitching (which has gone away since Lyme treatment), I still have sharp migratory joint pain that sometimes lasts for seconds, only to move to another joint and "stab" me there.

The pain comes and goes and moves around. But has gotten significantly better with treatment.

Your ID doctor sounds alot like the first one I saw... Please find a good LLMD, it will the best thing you ever do for yourself.

Posted by cbb (Member # 788) on :

I can not say FOR SURE that his info is correct or not, but in my opinion, it is not.
I have not had muscle twitches but I have had "shooting pains" in muscles, joints, & eye that lasted only a short time. Sometimes they felt like a pin was jabbed in the spot.

In my case, it could have been Lyme, Babesiosis, or Bartonella.
Since treatment for all three, it hasn't been a problem.

I have no idea who the ID dr was that you consulted.
Just want to make a general statement.

If a dr is said to "specialize in Lyme disease" -
don't assume it's definitely true.
There are very few "really, truly" Lyme Literate Med Drs (LLMDs) around.

Go to Seeking a Dr here on LymeNet.
Ask about LLMDs & put your location in the title.
Names are not given on LymeNet unless drs have given permission, but info will be e-mailed to you.

If your dr's name is recommended, especially by more than one person, then that's good.
If no one recommends him/her, then strongly consider finding a LLMD.

On the left, click 'Support Groups'.
Contact groups in your state & surrounding states. They have lots of valuable info they will share.

Go to www.ilads.org/burrascano_1102.htm
"Diag Hints & Treatment Guidelines..."
32 pages of excellent info by one of the very best LLMDs!!
Print a copy to keep for easy reference.

page 9: Symptoms Checklist
#21. Twitching of the face or other muscles
(This comes from good authority.)

The secret to successful diagnosis & treatment is being evaluated by a LLMD.
If the problem is not a result of Tick-Borne Diseases (TBDs), they'll tell you.

Posted by RECIPEGIRL (Member # 5884) on :

Stephanie,
I hear you loud & clear, yet I continue to be dumbfounded at these incidents still happening in 2004.

I had an EMG test (electrical testing of the muscles) years ago. I thought finally, after 5 years someone cares enough to document this neck spasm/weakness & facial muscle weakness causing awful pain.

Nope. They said the very abnormal numbers on the EMG test were a result of an "artifact" of the machine. (i.e. something quirky)

Why? Because obviously the extreme abnormal test results/numbers couldn't be right they said. Yes, they said there was definitely something wrong, but they couldn't tell what it was.

If the test results were just an "artifact", then the validity of the entire test was in question. A true scientist would insist on redoing the test on a different machine.

That's when they pretty much just scooted me out the door rather quickly. "Gee, we've never seen this before!"

Actually, there were 3 residents from the medical school in Dallas & each one tried to work the machine. When they saw the machine was giving them strange results, they told each other-----you're doing something wrong here & then the other one would grab the controls.

So in essence, I got shocked three times, once by each resident & no results. Gee, that was shocking!

Just trying to reassure you ------you're not alone out there in "artifact" world. LOL
Take Care,
Jan

Posted by kaos (Member # 4144) on :

While I agree that any symptom could be Lyme related (Lyme is a SYSTEMIC illness), I think that we will forever blame any symptom on Lyme. Remember, non-Lymies get symptoms too.

I'd also like to mention that all these drugs we take (myself included) have many known and unknown interactions with the body and with other medications and supplements. Everything isn't always Lyme.

Stephanie, I'm not saying your twitching and migratory pain aren't Lyme-related because they probably are.

Posted by TheCrimeOfLyme (Member # 4019) on :

Would you go to an eye doctor to deliver a baby?

Posted by Stephanie (Member # 5941) on :

Thank you soooo much!!! Do you think my reg neuro will test for the right things? - I'm having a spinal tues. What should I make sure of???

Posted by troutscout (Member # 3121) on :

STEPHANIE>>>>>>>

STOP!!!

Is your Neuro a Lyme Doctor?

If he is..then he would know the efficacy rates of spinal tap tests for Lyme only fall into the 7% effective rate for people that are known to have Lyme.

That's right!

It only catches 7 out of 100 cases.
Not very reliable if you ask me.

The side effects and possible.....problems can cause terrible headeachs etc...why would a knowledgeable doctor put anyone thru that test.

STOP THE PRESSES!!!!!!!!!!!!!

No SPINAL>

'nuf said.

Trout

Posted by robi (Member # 5547) on :

Sstephanie,

I have muscle twitches and migratory joint pain as well. Your Dr. is an idiot..........those are definately Lyme symptoms. Please listen to folks on this board and go to an LLMD right away.....these other docs are only prolonging your pain.

Peace,
robi

Posted by rosesisland2000 (Member # 2001) on :

Really doesn't sound good to me either.

There's a very recent post, just read it the morning, that mentions ticks and many responses relating the same.

Oh and migratory pain is a VERY COMMON SYMPTOM of Lyme Disease. Those docs who saw you know nothing about LD if they told you that. Believe me.

Count me in on a person who has a CDC positive Western Blot and a NEGATIVE SPINAL.

Skip the pain and suffering that can and many times does occur...muchless the money you'll save, and DO NOT get a spinal.

What you do need is to read more and arm yourself against the complicated disease. Don't just read your own posts, but read as many as you can. Start with the On-Line Library on the menu in the upper left or this page. It will be only then that you will be able to fight this disease with all you got.

Right now you have nothing, sorry. But, you need to see a real LLMD and one who come with recommendations from someone who have great experience with him. Not just a duck who says he knows about LD...that is NOT an LLMD and the vast majority, I'd say somewhere between 95%+ of the ID docs do not know anything about this disease other than what they were told in a sentence or two in Med School.

They were told that LD is cured with a simple course of about 2 weeks of antibiotics. If that were true, then you wouldn't be here now would you. NO, of course not.

It's your life and only you can take charge of it and find a real LLMD to treat you.

Rosemary

Didn't mean to sound too harsh, but, action on your part in necessary if you plan to ever get well.

Posted by beachcomber (Member # 5320) on :

I have muscle twitches AND I see an ID MD. He agrees that the twitches are Lyme related.

I have to take issue (yet again) with those on this forum who generalize about ALL Infectious Disease Drs. being ducks. It is statements like that which will disourage many who need help and can find it in a Lyme Literate ID MD who takes insurance, has a knowledgeable staff that can check your blood religiously and, will see you when you need to be seen.

I was taken aback by the local so-called LLMDs in the Northeast who could not see me for months and wanted cash upfront. I was especially horrified to learn that some have absolutely no background in any infectious disease treatment. There are some who are very good and treat aggressively. Where did they get their knowledge from??? ILADS & like organizations & seeing patients' progress - the same places my ID gets it from.

So, please stop discouraging folks by making generalizations about ALL Infectious Disease MDs. I would still be lying in bed, waiting for an appointment and insurance approval with the a local LLMD, if it were not for my ID MD. Some are very Lyme Literate.

Sorry for the tyrade but these generalizations get me P.O.ed.

Posted by duke77 (Member # 5051) on :

Beachcomber,

I did make a generalization about ID's which is probably not fair. In my experience with ID docs and many people on this forums experience with them, the vast majority of ID docs are not properly equiped to treat Lyme. If you find one you like and he is treating you properly and you are improving great stick with it. But Stephanie definitely needs to switch doctors, any doctor who makes those claims about Lyme doesn't know squat about it.

Posted by rosesisland2000 (Member # 2001) on :

Beachcomber, I, too, did not say that all ID doctors are ducks. I left a percentage of 5% of them are knowledgable and obvisously, your's is in that 5%.

NO, not ALL ID doctors are ducks. But, like duke said, most are. And, we are speaking from experience of reading over and over and over again and again and again of horror stories of undiagnosed LD patients having beeen given the ole heve-ho from these ID doctors.

Just go over to General and do a search for the extra long post on something like "How may doctors have you seen?" (before getting a dx of LD). You'll see post after post where the ID doctors missed the LD dx and many who had positive Elizas and WBs and they STILL would not believe that it was LD.

If you have a doctor, ID or not, that treats you they way you want and are comfortable with him/her, then by all means continue to see him/her.

If you cannot find that post, just post back here and I'll try and find it for you.

We were just speaking from experience, much experience of reading thousands of posts over several years to have come to that conclusion. I, too, was seen by an ID doc who couldn't believe that I had LD, even with a +WB staring him in the face.

Rosemary

Sorry, Stephanie, for getting off the title subject.

Posted by Kara Tyson (Member # 939) on :

Muscle twitches are very common. I dont know that you can time any symptom.

Could you rule out the Flu by saying someone didnt have a 101.375694873degrees??

Silly.

Posted by lymie tony z (Member # 5130) on :

a big CCCCUUUUHHHHHRRRRRRAAAAAAAAPPPPPP!!!!!!!
Hey Stephanie read what I wrote on your other post after you thanked everybody for their input......and BEACHCOMBER...I WOULD"NT EVEN GIVE THE ID DUCKS 5%. I personally have been through four different campuses of mainstream medicine and all the ID ducks four in mainstream medicine told me was that lyme does'nt exist here...and you can't have it or you don't have lyme disease but I'll treat you for lyme arthritis(I actually have that in writting); They don't know about it they say and they don't want to know about it....believe me they DO KNOW ABOUT IT and they also know they can't fix it...it screws up their percentages and they worry about their livelihood and they know the insurance company does'nt want any major heavy maintenance patients on their books so they(the id ducks) ignore it and hope you go away....far away from them...hey beachcomber God bless the ID doctor you have he/she is definitely a MAJOR RARE BIRD.
I have been to at least four different campuses of medicine in Ohio and two down here in Florida and Three hospitals associated with the veterans administration and the only time a infectious disease doctor gave me antibiotics is when I mentioned that I had either lyme disease or I was suffering from agent orange exposure...it seems they're more afraid of what I can get from that from the government than they can get prosecuted for treating my lyme disease....or as one in Bay Pines called it my AUTO IMMUNE DEFFICIANTCY....BULLFEATHERS......THE ZMAN
Sorry lil but hey don't have that test cuz it's documented that the lymie guys don't leave any luggage behind on their trip up your spinal collumn to your brain...and I have had this test done also with a negative result...it only gets the doctors off the hook(and hmo's) and you wondering if you really do have lyme disease or is it something else....as God as my witness don't bother with the possible things that can go wrong with this test and the eventual negative result...it just does'nt stay in the spinal fluid...for whatever reason...and the dang lab your neurologist is using is probably not up to finding it anyway so the doc and the insurance is not obligated to treat you for the disease(judgeing from your symptoms)you obviously have....the zman
------------------

[This message has been edited by lymie tony z (edited 25 July 2004).]

Posted by treepatrol (Member # 4117) on :

Quack if there on my list email me and off they will go.

Good Site http://www.canlyme.com/
FDA http://www.fda.gov/medbull/summer99/Lyme.html
CDC http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
Legal http://www.josephromanolaw.com/english/book.html
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.
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... http://flash.lymenet.org/ubb/Forum1/HTML/025469.html http://flash.lymenet.org/ubb/Forum1/HTML/025464.html

Help with meds. http://www.freemedicineprogram.com/
Just in case I never gave this too you

[This message has been edited by treepatrol (edited 26 July 2004).]