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362692 tn?1248639193

another opinion to add to the stack

Yesterday i saw my wonderful PCP. He and I had reviewed all the input from all the docs before I saw the lyme doctor TODAY so let's re cap

Neurologist say definately not MS because of Axonal PN need to rule out ALS

Rhuemtologisty thinks all my problems are vitamin D related  ( vitamin d now normal...me ...not normal)

ENT- thinks maybe MS but should rule out that nasty tick

Infectious disease- definatley not Lyme but need to see a good nuerologist becuase all symptoms are neuro yet he gave me 2 more weeks of antibotic for a disease I do not have.

PCP I asked him yesterday what does he thnk... he said he didn't know. He thinks it could be lyme but if we didn't get objective measure then he felt MS is on the table. I have felt for a while that he thought I had MS.


I am soooooooo confused.

Today I saw the lyme doctor... he thinks lyme along with one co-infection. He has ordered more blood work and has not yet made treatment recommendations.


Well there is no other word other than confused. Back to infectious disease next week for PCR blood results... lyme guy says they won't find anything. Rheumatolgoist next week too so he can yammer on and on that it was my low vitamin D that made not be able to walk, talk or function. Last week of mArch back to neuro so he can scare me further about ALS and Hopkins April 21st to add  more opinions to the pile!!!

Limbo land gotta love ...too bad they don't serve beverages here.

Rebeccah
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Avatar universal
The name of the book is "The Lyme Disease Solution". by Kenneth Singleton, M.D.  It is a good book with many good suggestions on how to reduce your symptoms when you have Lyme.

That makes sense about the Vitamin D deficiency explanation.  I have auto immune thyroid disease so I guess there is the answer on how my immune system is functioning!!

Please keep us posted.  I can definitely relate to your disappointment in not being able to do your yardwork.  Hang in there and I hope Hopkins will have a true answer for  you.

Elaine
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362692 tn?1248639193
My vitamin D is now normal.... it was 25. I was treated for 4 weeks. I was told by my doctor that normal is 32-100. which seems like a huge range. My vitamin D is now normal but I am not. My symptoms definately cycle.

They always start with eyes  (blurred visoin the eye ball fasciculates) then jaw then arms and legs.Then I have a 1-2 days of cruel normal days. i mean normal not a nuero symptom to be had then it starts all over again.

Each  cycle seems to decrease in intensity and duration.  I worked in my yard today and it would be nothing for me to fill wheel barrel after wheel barrel of mulch and  spread it. Today ...not even close I am brought to tears over the loss. My husband,  kids and I always do the yard before Easter. We have a lot of family friends over..... it was hard to ask my 12 year old to take on the majority of the load. I was so tired after the first load.

Many doctors have told me that Vitamin D deficiency is a symptom and an overall picture of how your immune system is functioning. Not a diagnosis.

How is Craig. How are you? It sound like you have some stuff going on as well. Thank you for listening and responding.
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Avatar universal
I am very sorry for all the diagnoses being tossed around.  Craig and I can definitely relate to your troubles.  

On the vitamin D opinion, I do have one comment.  I was found to have severe vitamin D deficiency, much below the normal range.  I also have severe vit B12 deficiency.

I have been having leg weakness, and much leg pain when trying to walk for pleasure...say a mile or more. If I tried,  I would have a very hard time running.  I can feel the weakness in the legs, and now that I am on high doses of vit D, things are not returning to normal yet.  And I was up all night with muscle pain last night from going on a walk.

How low was your D level??  

I would doubt that is what is causing all your problems, but I would have to say from my experiences, I have definitely seen a weakness issue from my vitamin deficiencies.

As I posted to you before, Craig has been in limbo and he did pursue the Lyme diagnosis in the beginning.

I am reading a very good book on Lyme.  Would you like the name of it?  It is written by a Lyme neuro who had chronic Lyme himself and was cured.  He is the one that uses LDN in chronic Lyme with good results.

Elaine



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