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DX with MS on 08/25/09 by Neuro: DX with Lyme by LLMD Today- READ THIS :)

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Posted 9/2/2009 11:18 PM (GMT 0)

Hi All,

 

I first appeared on this board a few weeks ago.  I been researching Thyroid disease, MS and Lyme.  I was pretty sure I had one of these.  I went to my family physician and he tested me for Lyme and immediately started me on antibiotics- doxycycline 2 times per day 100 mg for 22 days and sent me for MRIs.  My WB came back "negative".  The WB test was done by Labcorp and I had two positives IgG P41 and IgM P23.  My family physician referred me to a neuro and even my family physician was very hesitant about MS, but wanted to leave no stone unturned.  The nuero I went to see was young (mid-30s) and seemed confident and matter-of-fact.  I liked her right off.  She looked at my MRIs, saw lesions on my brain and spine and said, "You have MS."  She took me over to the film viewer and pointed out the lesions and said they were small.  She decided that I should have an MRI of my lower back done and a lumbar puncture.  That is scheduled for tomorrow.  I was so sad after my appt, but accepted it as my illness and decided I would deal with it.  I posted on the MS board, but I was then thinking I have a Thyroid disorder.  I ruled out Lyme because she said, No, you definitely don't have Lyme.  The more research I did, the more I began to think about all of the things I've experienced over my life.  I mentioned to the neuro that I had Bell's Palsy in 1993 (20 years old) and she said, Yes, this is characteristic of MS.  I asked her about the awful sun sensativity and she said that maybe I had another auto-immune disorder.  Not lyme.  So, here are all my symptoms and dates for the "big events"

 

Allergic to cold and pressure (Dx in 1983) 

Bell's Palsy in 1993

EXTREMELY sensitive to the sun (not heat) started in April 200

Ankle swells daily and sore (past several months) 

Numbness on left side from shoulder to foot (August 2009 to present)

MRI shows 5 lesions- 4 on brain and 1 on spine (August 2009)

Lyme test negative (August 2009)

Stiff neck (August 2009, gone after a few days of antibiotics)

Sore throats

Low-grade fevers

Sore knees

Night sweats

Heart palpatations

Burning or stabbing sensations all throughout body- in toes recently

Fatigue, weakness

Irritability

Loss of sex drive 

 

Today, I went to Dr. J in Maryland and he told me that I had Lyme and that IgM 23 was specific for Lyme.  He believes I have co-infections (not sure if I'm describing this correctly).  He's sending me for a series of test and is piggy-backing off my lumbar puncture tomorrow and asked that I get them to take an extra vial to take to his lab.  So, that's where I am.  Dr. J is convinced I have Lyme and other infections and now I feel like I can finally get to the bottom of this.  Don't give up!  I ALMOST did.  I almost cancelled my appt. by my husband insisted that I get a second opinion.  My neurologist seemed to focus on the MRI and didn't really consider all of my other symptoms.  Dr. J looked at the entire picture and that is the kind of doctor we all need.  Also, I obtained copies of ALL my lab results over the past several months and take them with me to each doctor.  So, Dr. J and the neuro had the same tests in front of them and gave me two completely diagnosis.  It can happen!  I am still in disbelief...
Posted 9/2/2009 11:32 PM (GMT 0)
I have all the symptoms that you mentioned - and I KNOW I've got Lyme, that's why I'm not going to pay for expensive tests for MS. I was lucky - I was referred to a very good Lyme specialist in my area right away. I went to a couple of dermatologists for probably ten years, but that was the extent of it.

Hope you feel better soon - I (selfishly) hope I do too! Well, maybe that's not being too selfish.

Victoria
Posted 9/3/2009 12:13 AM (GMT 0)
I have also been diagnosed with MS by many Nuero's in my State. I always tested Positive for Lyme so after many months of confusion I went out East and saw a Lyme Friendly Nuero, he diagnosed me with Lyme. Put me on IV antibiotics and I got much better. I had an almost clear MRI 3 years ago about 11 lesions disapeared. My Local Nuero was shocked but still won't admit I have Lyme or antibiotics help me.

Unfortunitly after getting of off all Antibiotics I had a severe relapse. I have many new lesions and symptoms. Once again they wouldn't talk antibiotics and I got my Butt back on a Plane flew 3000 miles to get antibiotics again.

This time the Nuero found even another Bacteria, CPN that he believes causese MS and put me back on Antibiotics. And so far no new symptoms and we will wait and see. I believe My MS is caused by Bacterias and Antibiotics have made me better once they will do it again.

Good luck in your new found battle. I have had some rough times with my Drs but  I am still fightin.

Posted 9/3/2009 1:11 AM (GMT 0)
Hi All,
*** THIS IS NOT MEDICAL ADVICE!!****
- as with most anything (giggle) it's just my humble opinion!!

I don't know the risks of putting off any MS tx (if you truly have MS), but I would tell your Neuro that you will NOT allow the lumbar

puncture - unless he/she takes the vial for Dr. J (an LLMD?) FIRST.

Several yrs ago, before I realized I actually did have LD - my gp at the time wanted to desperately dx me with MS.

Since I have done a lot of "investigative reading" on medical issues, I didn't believe I
had enough of the sx to out-weigh the risk of

having a lumbar puncture - so I never allowed it. Needless to say, maybe, but I very quickly fired him shortly after that.

If Dr. J is a LLMD, my 'bet' would be that he/she is the one on the right track. But each person has to evaluate their own condition &

determine who to trust. Hopefully someone with much more experience & knowledge (especially on MS) will be able to answer this

for you - maybe (?) even before you go to your lumbar puncture!

LLMDs aren't really any smarter - they have just had their eyes open to the fact that LD is the current "Great Imitator".

Also please remember, there are those of us Lymies that don't test pos. for LD until after under a tx for awhile.

As for me - it took a full year on higher doses of Minocycline before I came up positive for any TBIs. Now I test positive for RMSF, Lyme

& have a clinical dx of Masters' (from the Lone Star tick)

I am convinced that we absolutely have to be our own advocates - or "they" will just pass us around & around.

~Trav
Posted 9/3/2009 2:45 AM (GMT 0)
Hi mokeyho!

Wow! That's great news. It's especially good that you caught this while your lesions are small- lesions caused by Lyme disease can be cured! Hooray!

Best of luck with your treatment, and thanks for the wonderful post.

Nicky
Posted 9/3/2009 2:56 AM (GMT 0)
I have posted this before, but I feel the need to say it again. It seems to me that in the case of a person being stuck between 2 diagnoses, should have a CD57 test. This is not a hard and fast diagnostic test, but it is pretty specific to Lyme. AND it is relatively inexpensive.  Low CD57 numbers are associated w/ Lyme and not MS.

Of course, it is possible that Lyme disease causes MS, but that is not known at this time.

Further, I believe that you have enough positive lab work to at least start on Abx and see if you experience improvement.

I'm sorry that there are so many of you out there, stuck in MS vs Lyme Limbo. I believe there should be enough tests that can help you feel more confident in your diagnosis.
Posted 9/3/2009 6:05 AM (GMT 0)
Hey Mokeyho,

I am so glad you are treating the lyme first.  You have so many more lyme symptoms than MS.  Sore throat and fever and the other signs of infection just don't make sense in MS. 

I know that testing for MS and or Lyme can be confusing and frustrating.  Paying close attention to those symptoms is really important.  I am quite sure I don't have lyme based solely on my symptoms.  I don't have those classic signs of infection.  I am very very stable day to day.  I have almost no fluctuation of symptoms.  I don't have fevers or achey joints.  I don't flare on a monthly basis.  I never feel worse after a routine course of antibiotics (say for a sinus infection).  I have a consistently hight energy level.  I have zero swelling.  I have not had an increase of symptoms or lesions for over two years.  And while I do have MS issues I deal with everyday.  I work full time; I am a wife and a mom.  I live with very few limits so far.  I hate to say it, but chronic lyme is much worse than what I deal with!  I may feel differently several years down the line, but for know I will count my blessings.

MS moves slowly.  After the first few years, MS tends to slow down for a long time.  You may only flare once a year or once every couple of years.  Although, everyone progresses differently. 

I agree that lyme may be one of the causes of MS.  I don't believe it is the only cause. 

I hope this helps someone to manage their disease, whatever that may be.  I continue to stand by my orignial opinion that when in doubt, you treat for lyme first.  Your response to that treatment could help to verify your dx.

Posted 9/3/2009 1:46 PM (GMT 0)
You're always so good like that, G! I am glad that you posted!
Posted 9/3/2009 7:11 PM (GMT 0)
Monkeyho,  You've probably have read that LD can cause lesions in the brain as well.  Some or your symptoms don't sound like MS, LD and MS share alot of symptoms though.  I would suggest having a CD57 test done through LabCorp as MS isn't suppose to affect it, but LD is.  Question everything, and read all that you can, doctors really don't have any idea about LD.  Good Luck, KO
Posted 9/3/2009 7:34 PM (GMT 0)
hey mokeho.. I'm glad to see that you found a dx that fits better and I'm excited for you to begin this path. You'd written to one of my posts asking about Dr J and in it you said that I could email you.. but I couldn't. It wasn't available... do you have to change something on your profile to enable others to email you? I wanted to talk further about the doc himself since I've read conflicting reviews about him. But actually, since you're just now starting up w/ him I suppose you won't have much in the form of history w/ him, but anyhow.. I'd love to talk to you. I'd also have to come up from Florida believe it or not, so I really want to know that I'm doing the right thing before I take such a leap of faith.
Posted 9/3/2009 7:39 PM (GMT 0)
lotusillusion,

If you look at the top of this page on the left hand side, there is a "control panel". You can add your email in there if you'd like then mokeyho could email you....or vice versa.
Posted 9/3/2009 7:59 PM (GMT 0)
Hi lotusillusion, The only reason why I haven't put my email is because it has my full name in it and I didn't want people I know googling me and finding out about my health, concerns and anything that I've written about. You just never know what people will think if they know you are ill. I just added another alias to my yahoo account [email protected]. Email me and it will come to my main email account.

Post Edited (mokeyho) : 9/3/2009 7:00:53 PM (GMT-6)

Posted 9/4/2009 8:22 PM (GMT 0)
Hi Mokey!

Did the Neurologist follow through with the request from Dr. J.? I am sorry I missed this earlier; I would have suggested (and for future reference), Dr. J. needs to write the order for you to carry to the neurologist so that you are not the messenger.

You are on your way and in good hands. I am praying that your tests clearly identify what you need to know is going on in your body and that your treatment plan is effective for you. it will take time; so please surround yourself with a few trusted family members or friends.

The feelings you expressed in your original thread remind me of the first days we learned about Heth's diagnosis after 15 years of the rollercoaster and how I felt. It is understandable and each phase gets a little better as you see the healing process when under the guidance of the right practitioner and team.

Please make sure that your immune system is supported w/Dr. J's help and that all deficiencies are nourished w/appropriate supplementation.

Take care and I think you are in very good hands.
Blessings, Sojourner
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