After alot of thought....

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CajunGrl
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   Posted 8/2/2009 5:42 AM (GMT -7)   
I think I'm going to see another LLMD. I've been having neurological problems and I don't think my current LLMD is experienced enough to treat me. I recently called the office and asked what he usually does for neurological problems with Lyme, beings as I just started having this after I started treatment. I was told I would probably be sent to a neurologist!?! That alarmed me because I live in the South and most doctors here do not know how to treat Lyme. Most don't even think it exists here. In my opinion, I would think that my current LLMD would know what to do. <sigh> Maybe this is a good thing. I don't know. I do know that I definitely do not want to leave my life in someones hands that doesn't know what they are doing. Sooo, I'm filling out paper work right now to see an LLMD in Florida. I've heard really good things about him. I called and spoke to the secretary there and told her that I truly had to make sure he had dealt with patients with neurological symptoms from Lyme Disease especially since I would be driving 12 hours to get there. She advised me that he had been treating neurogical symptoms for decades and she stayed on the phone with me and calmly answered other questions. She was very sweet. I really feel good about this. The only thing I'm worried about is the long drive. I have to push myself to do it though! This is my life and I want it back!

I had to have a primary doctor work with my LLMD since he's so far away. Well, I found one to work with him!!! She is a great doctor. She's my husband and I's internist. Shesvery caring and open minded. I know she will be there for me.

All I have to do now is send the paper work back and see if he accepts me as a patient. I also need
to call my insurance and make sure they still cover him. They did back in 2007. This is actually the
doctor I was going to go to the first time. I wish I would have.

Anyway, that's what I'm dealing with now. I need lots of prayers. My health has not been too good
lately. I'm glad I have this board and all of you:) You all give me something to look forward to everyday.

A special thanks to 1bitten for giving me all of the doctor's information. She has been there for me and has answered a ton of questions! Thanks hun!

Big hugs to everyone!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/2/2009 9:32:02 AM (GMT-6)


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 8/2/2009 10:23 AM (GMT -7)   
CG, good luck to you in your vinture. you have to do what you feel is right for you in your heart. i pray you have a smooth ride there and back, and he is able to help you.

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/2/2009 10:37 AM (GMT -7)   
Thanks RD!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Agmaar
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Date Joined Jan 2009
Total Posts : 376
   Posted 8/2/2009 10:53 AM (GMT -7)   
A lot of LLMDs are willing to do some of the monthly follow ups by phone. So maybe you'd only have to make the long drive every few months.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/2/2009 10:59 AM (GMT -7)   
Rich,

It would be great if he did that. That would be alot easier on me for sure.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 8/2/2009 11:29 AM (GMT -7)   
I pray that you have found skillful hands, a safe trip to the LLMD & home again - now & in the future.

I understand what you are saying about taking control over your life - that's something I am really struggling with right now myself. =(

I have the choice of a 4 hr trip & an LLMD who will not fine ANY kind of insurance & all payments have to be made as soon as you get out of the examining room --- or

check out another LLMD that is a 5 hrs trip one way. I am going to search for whatever info I can find on him,

but if his office will take insurance I really don't have any other choice.

Since hubby's 'disablement' back in Dec. (he almost died), finances have been pretty tight.

I don't know if I can start something new & as expensive as all of the protocols ~ choices I really wish I didn't have to make.

Oops! Sorry for all of that rattling on!!

I pray that you stay safe & find the help you are searching for, CG.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/2/2009 11:51 AM (GMT -7)   
Thank you so much Traveler. I'm so sorry about your husband. Is he okay?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/2/2009 12:23 PM (GMT -7)   
hi CG,
hubby's health has stablized, thank you for your sympathies & concern!! He has DVT & PE. Both of his legs from hip to ankle were completely full of clots & his lungs were over 70% full of them as well. No one would tell us an exact # - I'm sure they figured we really freak if we knew.

He is on coumidin now for life & a permament(sp?) filter was installed in the return veins of his legs. He's holding on & I have him at home now!! =) , so at least I am no longer essentially living by myself, as he (used to be we) traveled around the country for his work.

Trav
PS - you will remain in my prayers as you seek tx.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/2/2009 12:36 PM (GMT -7)   
OH, CG, I do not envy your adventure and your drive! Interstate driving is one thing I cannot do and my son had to drive me 30 miles south to see my LLMD. You are brave and so now we know you are strong enough to beat these nasty things!

Your post sounds very optimistic, so between you and all our prayers, I believe you are on your way!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 8/2/2009 1:29 PM (GMT -7)   
CG, I have a really good feeling about your decision and can't wait to hear what your new doc says. Other than the long drive, it all sounds good. You're in my prayers too and I wish you all the best.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 8/2/2009 7:49 PM (GMT -7)   
Hi CajunGrl,
 
I also suffered from many neuro problems including lyme rage episodes.   It was horrible!  I remember when I used to go to my bank I had such a difficult time filling out either the deposit or withdrawal forms.  I had to keep re-writing it and I felt so frustrated!   I kept thinking I did it right but the bank teller told me "oh no, that's wrong, take another slip"...
 
What I learned was that toxins (especially lyme toxins) convert into Nitrate Oxide which in turn converts into Ammonia and too much ammonia causes neuro symptoms as well as joint pain, muscle pain, fatigue, etc., etc. 
 
I just didn't learn this from Dr. Jernigan, I did my own research a couple of years ago where I saved all these links from other doctors who study this, I don't know where those links are today.
 
In any case, what do you have to lose by taking a product that helped me clear out all that ammonia from my brain and body?  I took Dr. J's CNS/PNS Neuro-Antitox Formula.   I believe it's the same price as it used to be $48.00 for a bottle and no, I am NOT affiliated with Dr. Jernigan in any form, hey, I wish I was!  LOL!  Then I could learn more to help others.
 
You can take it with antibiotics (certain ones you would need to remove the alcohol which is very simple).   I remember when Alfers took it and she said it helped her alot.
 
Hope you feel better!
Denise 
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 8/2/2009 8:10 PM (GMT -7)   
Deejavu, I am taking the advice you've given to CG and will let you know if it works for me. I woke up the other morning and didn't even know where I was. It took quite some time for me to figure out I was in my own bedroom and then another few minutes to remember where I lived and what was beyond my bedroom door. It was so scary. A friend asked me today if I remembered who I was when this was happening and now that I think about it I don't think I did. Anyway, I'm glad your neuro issues improved and thanks sharing.

CG, Hang in there. We both are going to get better although it might take us a bit longer than we thought it would.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/2/2009 9:06 PM (GMT -7)   
Hey everyone, thank you somuch for the well wishes and encouragement:)

Scorpio: I had the same thing happen to me a few times while on treatment. The worst was wheni was on Zithromax. I woke up and couldn't remember my husbands name or who he was. When I finally did remember, I kept feeling like I would forget again. That scared the you know what out of me!

Recently, I've wokenup and still felt like I was in a dream. I catch myself staring at a certain object in the room not knowing what it is. I hate that feeling. I know how it feels and I sure hope it gets better for you soon.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 8/3/2009 10:16 AM (GMT -7)   
Cajungrl, I feel what you are going through. Almost 3 years ago I was treating with a LLMD for 1 1/2 years. I am grateful to him because he got me on my feet after being sick for so long. But I felt he was simply giving me the same meds over and over and I was at a plateau. All he would do the entire time I went to him would be write notes and not speak to me other than when I would ask a question and it would be a very brief answer. I felt like I was just part of his experiment in treating Lyme. He also insisted on seeing me every 3 weeks!!! For $200.00 a POP!!!! I was desperate after seeeing more than 32 doctors, so I continued seeing him in order to get some kind of treatment.I delayed going to another LLMD because it would mean another $750.00 consultation fee.

However last September I bit the bullet and got in to see one of the LLMDs that is in the documentary "Under Our Skin" It was the best move I could have made. I am now much better than I was before I went to him and he allows me to come in every other month.

So you are wise in not wasting time. If you feel you need another doctor then you do. If the LLMD you are going to see is in Tampa I have heard good things about his treatment. I wish you contiued success in treatment and..........Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/3/2009 11:14 AM (GMT -7)   
Minerals,

You're so sweet. Thanks so much.

I am going crazy trying to get all of this done today! I just called my insurance to make sure that this doctor was covered and I basically didn't get a for sure yes. I went off on the lady and told her she was rude. She even made sure I knew that this doctor was in another state and "did I know that?" She said, " You do live in Louisiana right?" Duh! I know how far away he is!!! Grrrrrrr! I hate when people are rude for no reason especially when I'm sick! So, I had to call back to make sure he was for sure covered. He is, thank God! The new lady I talked to apologized for what happened. Geez!

Anyway, vent over, lol. It's like you have to jump hurdles when it comes to insurance.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/3/2009 12:18:48 PM (GMT-6)

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