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Questioning my diagnosis

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Posted 9/5/2016 4:57 PM (GMT 0)
I've been really down lately as im seeing zero improvement after nearly 2 months abx treatment. Im beginning to think I have very rare incurable diseases causing my symptoms. Is this common to think this way? My muscles are wasting away and its starting to frighten me. I think I have diseases like ALS, Spinal Muscular Atrophy aka Kennedy's disease, multiple myeloma, Parkinsons etc...

Without more testing to rule them out, how can I convince myself that its Lyme causing the suffering? I guess I need confirmation that the little bacteria can cause all these major problems. Clinically diagnosed by LLMD and CDC/Igenex positive. :(

happy labor day to all.
Posted 9/5/2016 5:06 PM (GMT 0)
Horowitz would say the reason your not getting better is because co-infections.

Have you tested positive or been clinically diagnosed with any?

I personally feel that Bart or Babs is the barrier to my progress. If you caught it right away the basic ABX very well may have taken care of the Lyme, while he co infection thrives?
Posted 9/5/2016 5:13 PM (GMT 0)
Long before i knew i had lyme i was frantically trying to figure out what the issue was. Reading literature on cardiology, cancer biology, autoimmunity, etc. Became clear to me very quickly that ALL of these disease have infectious causes. Lyme or otherwise. If you are CDC positive that is all the proof you need. Why you're not getting better could be due to time, the abx choice or some other factor. Did you test for coinfections? They are just as devastating as lyme and respond differently to different drugs/herbs. Viruses can be another big problem that don't respond to abx at all. If rotating through a few abx brings you no change in symptoms it might be worth experimenting with herbs which tend to hit a wider variety of microorganisms.
Posted 9/5/2016 5:35 PM (GMT 0)
You're CDC positive - you don't need to question whether you have LD.

CDC positive is not 'easy' to get...

...and you have the symptoms.

Two months isn't a long time for treatment to show results. Hang in there.
It is possible that a lot of your symptoms are from a co-infection...and will need a separate treatment.
Posted 9/5/2016 5:58 PM (GMT 0)
Have you been to rheumatologist?
What is ALS?
Posted 9/5/2016 6:11 PM (GMT 0)
ALS - Amyotrophic Lateral Sclerosis

(Lou Gehrig's disease)
Posted 9/5/2016 6:11 PM (GMT 0)
What would you do differently if you had als?
Posted 9/5/2016 6:13 PM (GMT 0)

Lymepilot said...
Horowitz would say the reason your not getting better is because co-infections.

Have you tested positive or been clinically diagnosed with any?

I personally feel that Bart or Babs is the barrier to my progress. If you caught it right away the basic ABX very well may have taken care of the Lyme, while he co infection thrives?

Two months really isn't a long time for someone to expect to feel better.
Posted 9/5/2016 6:14 PM (GMT 0)

magoo2 said...
What would you do differently if you had als?

exactly - nothing to treat ALS with...


Here is a youtube video - Dr. Martz - misdiagnosed with ALS.
(He's in the Under Our Skin video)

/www.youtube.com/watch?v=UY9FdULDV6M
Posted 9/5/2016 7:34 PM (GMT 0)
I too have site specific muscle wasting ...it is a lower motor neuron disfunction ..i believe it is caused by bartonella and mycoplasma attacking the nerves ...i talked to a lady who had hers reverse with tratment .one guy is now skin in bones ...at the hospital they said i had disseminated cmv ,go home and die ..
bee venom, iv rocephin ,silver, oil of oregano , fight azeril fight ..do it all .you are fighting for your life !....dave martz did 4 gram a day with zith and flagyl..
i felt ok on tinidazole yesterday..more tingling .read this http://www.shackel.org/mytheory.html.

look at other thread on muscle wasting ..girlie and remjnder have stopped theirs with rifampin ,etc
Posted 9/5/2016 8:00 PM (GMT 0)
actually my muscle wasting stopped before I went on the Rifampin.

But, I didn't start building muscle and strength until I started treating Bart.
....and I'm still building - not back to where I was yet...hopefully I will get there..got the age thing going on, too. sad

I have ramped it up a bit - seeing a Physiotherapist regularly for the upper back/shoulders...and doing exercises.
Posted 9/5/2016 9:26 PM (GMT 0)
Thanks for the support. You guys are great

I havent seen a rheumy in fear of being misdiagnosed. I do feel I have full body arthritis and tendinitis. I tested for co-infections but they came back negative tho my lyme dr believes bart is probably in my system. I have not tested for mold.

I just need to remind myself that lyme can cause these major symptoms we deal with.
Posted 9/6/2016 2:11 AM (GMT 0)
Yes - they certainly can.

My joint pain is very minimal now. I don't think I have arthritis from it...time will tell.
Posted 9/6/2016 3:21 AM (GMT 0)
If you are cdc positive I don't see why you are still questioning. Until I got my positive test yes I thought I had all the other diseases but once it came back positive for me... the search was over.....
Posted 9/6/2016 1:53 PM (GMT 0)
It doesn't sound like you are questioning the positive tests, but you are questioning why you are not better. I think most responses have covered the fact that you haven't been treating long and that there are some parts of the puzzle that may be missing. I think that most of us question whether something else could be going ons once we can feel very bad.

I would definitely check into viruses and yeast. Both can make you feel awful. And of course co-infections.

Other than the symptoms you listed, are there others? Have any symptoms gotten better? What has gotten worst? Sometimes answering these questions can help point to a possible co-infection(s), etc.

I loss a lot of weight during all of this. I am just now beginning to notice that I am gaining muscle mass and some much needed body fat. The scale hasn't moved much, but I can see it in my body. So there is hope!
Posted 9/6/2016 4:53 PM (GMT 0)
My husband was working out every single day and training at 53. He was talking about going into competitions. It took literally 1 week before that was gone, I mean gone. His muscles were no longer there. I've never seen anything like it before. He was diagnosed with Lyme and Babesia. Please get tested for Babesia. It destroys your muscles. Lyme rarely travels alone... Just my 2 cents. Sorry to hear that you're going through this also, good luck to you!!
Posted 9/6/2016 5:07 PM (GMT 0)
Joey - my muscle loss was very quick too. I couldn't even flex them...they were just flacid.
Good news - it does come back...slowly, but surely.

Is his muscle tone coming back, Joey?
Posted 9/7/2016 5:15 PM (GMT 0)
Yes, thankfully they have slowly started to come back. It was truly amazing how fast they disappeared!
Posted 9/7/2016 5:47 PM (GMT 0)

JoeyM said...
Yes, thankfully they have slowly started to come back. It was truly amazing how fast they disappeared!

I know...I was really worried/scared. ....especially when I kept going to ALS sites on the 'net'.
Posted 9/8/2016 4:44 AM (GMT 0)
Im still freaked out ... als ms ,fibro all bs
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