Please Help us!

[brownie]

Hi! My friend has been diagnosed with "lyme disease" she had a positive result back in 2007. However, she has spent thousands of dollars out of her own pocket to go to neuroligists, 3 of them so far, all to be told she has ALS. They wont even acknowledge the lyme positive test, they say she has white matter on her brain, but not alot. she has someeeee classic als symptoms, ie..her hands are curled and weak, she basically cannot use them, but bless her heart, she can still type, she wont give up! Does anyone know the next step we can take with this? It feels like these doctors turn their back on the lyme diagnosis..? Im at my wits end, and dont know what to do to help her. Her speech is just fine by the way, and her walking is good, she does however have "klonis" in her legs.. does anyone know of a next avenue we could go to treat lyme?. Thank you very much for reading this long post..

 

[sharona]

I don't know for sure but i think they give antibotics for lyme disease. I would be finding another doctor that will listen.god bless
sharon

 

[BethU]

Why didn't the doctor who diagnosed her with Lyme Disease follow up with treatment? It would seem logical to make an appointment with the original doctor who made the diagnosed and take it from there.

I'm afraid I don't understand the situation. Sorry! If she had a diagnosed, why is she continuing to see different neuros? Have all three neuros diagnosed her with ALS?

I hope she and her doctors get this straightened out. You are a good friend to help her.

 

[brownie]

basically i went to a neuro first upon having symptoms and they diagnosed me as ALS. I then sought a second opinion and went to a rare disease dr, did the lyme testing and tested positive. The neuroligists, seem like they dont want anything to do with the lyme's diagnosis, and keep saying its ALS...Im Have a pic line in my left arm, dispenses rocephin twice daily. since march of this year. also been on antibiotics since the first diagnosis in november of 2008. i dont feel like im getting any better. Im looking for a lyme disease specialist in my area, eastern washington, or anywhere in washington state! That truely knows how to treat lyme...anyone know! my original dr, doesnt even call and check on me, I have had the iv in since march and heard from his office once. Why cant i find something or someone who can really help me?!:-?

 

[GlenBrittle]

{{stirs the pots and stands back}}

You know , it sucks when health care turns into a business, not a profession.

:evil:

 

[GlenBrittle]

Brownie, I was tested for Lymes before my diagnosed as one of the things to rule out .

Just in-case you have not read this yet. Here is a link.

Gov Guidelines

Glen

 

[BethU]

Brownie, have you tried to contact the rare disease doctor? You say he/she hasn't contacted you, but do you have a follow-up appointment? It seems incredible that they would have an iv line in for four months and not keep in touch with you to check up on it. I assume those meds you mentioned are for the Lyme Disease?

As the saying goes, it's the squeaky wheel that gets the oil. If it were me, I'd call this rare disease doctor's office and make an appointment for a consultation. If the meds he has prescribed are not helping you, the doctor needs to know about it. Nine months on antibiotics with no improvement sounds wrong.

Somebody needs to follow up on why this treatment is not working and how long they are going to treat you with no results. If the doctor doesn't take steps to contact you, it will have to be you contacting him. I wouldn't continue to endlessly take meds that aren't helping.

Once you get the Lyme treatment cleared up with the "rare disease doctor," I'd go back to one of the neuros (whichever one you liked best) and lay it on the line. Did the neuros do EMGs, MRIs, blood tests, etc? I'd ask point blank why they have ruled out Lyme and make them defend/explain their ALS diagnosed.

I write out my questions and concerns before I go to a doctors appointment, as it's easy to get distracted. Maybe that would help.

Good luck. You deserve answers to your questions.

 

[brownie]

you all should know, iam the person with als/lyme's friend. She cant type very accurately anymore, so im typing for her. she did get one follow up phone call from the infectious/environmental dr in richland, once since march. She has been to see a doctor in seattle at virginia mason, and he said the Als thing as well. We are wondering if anyone on here knows of a rare disease physician here in the northwest. oregon, washington, idaho? My friend has tried endlessley to find one, she is a fighter, and i know she is NOT taking the ALS diagnosed. laying down. She wants to know, then WHYYY do i keep having lyme positive test's. through igenix. IF indeed it is ALS...whats the connection...does the lyme cause the Als? she never saw a bullseye bite anywhere on her. as they say thats what you see when you contract lyme from a tick? Maybe ticks carry the lyme/and the lyme turns into the ALS..who knows? Also she has about 7 white spots on her brain, and the neuro's couldnt explain those either? wow, this is so dang hard . she is only 45 years old, very athletic her entire life, a devout vitamin taker...and health food person...how can this happen?

 

[sharona]

I would like to know how they have been able to diagnose you with ALS this soon.My husband has been seeing a neuro for 3 yrs.Mri's ,ct, biopsy,spinal tap emg's, pos babinski, hyperreflexes,muscle wasting,fasci's etc. and still the doc doesn't know only will say MND. Slow progression & I pray what ever it, is it stays that way.God Bless & I hope you get some answers.
Sharon

 

[brownie]

thank you sharon, I hope so too, this is the most frustrating thing one can experience, watching your best friend waste away right in front of your eyes, she was once so vibrant and strong and now this poison is eating her up... I love her so much and am going to keep fighting right along with her to find a cure for whatever she has.. WE WILL NOT ACCEPT THE ALS DX, especially when shes tested positive for lyme.

 

[BLPhill]

Hi Brownie

If I were in your friends position, I would call UW in Seattle, and don't mention ALS. Have the Dr who gave lyme diagnosed give you a referral there.

I can tell you from experience they have excellent drs

 

[Marjorie R. Wilcox]

What is the test for lyme disease, and is it any more definitive than the process of elimination? I know they search for the spot where you were bitten, which is conclusive.
I ask these questions because here is where my thoughts are going...... Lyme disease is one that they eliminate before the diagnosed of ALS. I don't think there is just one test for either.
It seems to me, since she went to several neurologists now and got the same diagnosed of ALS that it is ALS.

My Rick (husband) has lived with the diagnosed of ALS for almost two years now. When he asked for disability benefits from the VA, they say he might not have ALS, but something else bogus, like.... a STD or exposure to asbestos or that he might be a closet alcoholic. If those ideas weren't so funny, I would cry.

You have to live with what you have. There is treatment for lyme disease so I would go there one more time, but try to go on as best you can with your lives. There is certainly no hurry to get meds for ALS because none of them really make any difference anyway.

Rick has slow progression and I believe it is because he eats well... no white flour, sugar, or artificial sweeteners. He totally controls his typeII diabetes and blood pressure this way. He is doing pretty well and is very happy. That counts!

 

[Zaphoon]

I think it is absolutely stupid for you not be treated for Lymes if you tested positive for it.

This one is beyond me!

Zaphoon

 

[brownie]

Yes, she would accept the diagnosed of als, HOWEVER....it just doesnt add up...the symptoms i mean, all she has that mimic the als is the muscle loss and curling of the hands, her speech is perfect, its like it totally has skipped her elbows, and only affects her shoulders, and hands..she is still able to type, not fast of course, but she can type. We noticed yesterday when doing her physical therapy exercises, that the mucsle tone in her left arm( where she started showing symptoms a year ago). Well it seems to be getting more muscle mass there again, that is the arm she has the iv in. doesnt it make sense that the body would start healing itself in the original place it started first? we have two diagnosed of lymes, and we are going with that! these neuro's wont even talk about the lyme diagnosed, the last one we went to, briefly scanned her brain mri, looked at her and said, "so why are you here". If they said you have als then you have it! we are just trying to find out, if it is als, then WHY ON EARTH, does she test positive for lyme...Maybe lyme causes Als...Anyone out there in the same situation. And to BETTY..thank you, she is on the phone right now trying to get a referral to the UW.. go huskies! thank you again everyone for your input, its very important to me and my best friend...we are scared.

 

[crystalkk]

brownie,

Have you been on the lyme net website, they will be able to give you names of lyme literate drs in your area. There are quite a few
people on there as well that have a diagnosed of both.

Is she testing postive for lyme by the CDC guidelines or just Igenix guidelines.

Has she been to an ALS specialist or just general nueros?

Most medical drs that are not lyme literate drs do not believe that lyme could be a chronic disease, they just believe that 4 weeks of antibotics is enough.

I have also heard that sometimes it can take a year to feel better and see improvement on the IV roceptin.

What are the results of her EMG?