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» LymeNet Flash » Questions and Discussion » General Support » Help me have some hope

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Author Topic: Help me have some hope
OzLyme
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Member # 51660

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...when it really looks hopeless for me.

Basically, i have the symptoms of Lewy Body Dementia. I have been in despair, up until a few weeks ago when i started thinking of it as Lyme disease instead (i know i have CPn at least, prob other cos), and hence potentially treatable. But now have learned Lyme + parasites are possibly causing Lewy Body in people, and my symptoms are classic lewy body, and some of my symptoms seem to be unique to it. So im feeling terrible again.

I am only 31, however, i was stupidly given an anti estrogenic drug for mild gyno and a steroid spray for sinus problems, which started all this off, gave me skin wrinkles, some gray hair, blood vessel problems... etc. So basically i thought id "gone through artificial menopause" anyway. I later learned that Lyme grows when estro is low.

For the majority of the year, i was in total despair, but then learnt more about the possible causes of neurodegeneration. I found out about mold illness (was in a moldy room for many years a while back), CPn infections, and now suspect more stealth infections such as parasites.

A few weeks ago i was feeling a bit better mentally, even if other symptoms were the same, because I started to read more about Lyme, and read about people having problems with balance, muscle twitches, cognition, etc.

So I was starting to think more like "its neurological Lyme disease" rather than "its lewy body dementia". However... i recently read on this forum that Lyme + parasites seem to be highly linked to lewy body! Alan Macdonald / Thomas Grier's stuff. It makes sense to me, since ppl already suspect pathogens in dementia, since symptoms often start in the nose region of brain, and spread.

Anyway, this recent revelation... along with having some symptoms which seem highly lewy body and i havent heard of being in Lyme, have really gotten me down again.

One of them is the "lewy lean" - ive been gradually tilting my body to one side, for ages. But now its very severe.

The other is, i noticed in the shower I will shuffle back from one side of the body tothe other, moving from foot to foot. I learnt that people with lewy body "rock back and forth" like this.

And yeah, cognitive problems, mixing up words, sleep disturbances with night sweats, poor balance, muscle twitches all day and over whole body, extreme tightness, tremor, verbal jumbling, visual changes... these can all be Lyme, but are LBD symptoms too.

My neurologist thinks its all psychological and i should go to hospital for psych treatment. And though supportive, my family believe my neuro and are starting to suggest it. I think itll be all over if i do that, but fighting this alone is so hard. I have an understanding functional med GP but shes not a Lyme expert.

I did have a lumbar puncture and they said it didnt look like dementia, amyloid levels were fine. The phos tau, which is associated with parkinsons / lewy body, was higher, but still in normal range. So there's that. But I fear im in early stages.

Sorry i really tried to make this shorter... but can anyone give me any hope that my situation could improve? Thinking of it as lewy body is really utterly depressing and i understand why Robin Williams ended his life, though ive only had a taste of it perhaps. If its Lyme, its better, since potentially treatable... but... it really looks like LBD to me [Frown]

Ive started my antibiotic therapy for CPn, but im also at a loss as to whether to take them... since maybe my problems are more to do with mold and the mold will like the antibs and grow! And i should prob detox more first (ive been on binders and other things a little while now)

I also may need to add another drug in if I have Lyme as well as Cpn... since right now its just roxy/doxy with tini pulses. I took penicillin a few weeks back for a different infection, and i seemed to feel better. Could be a hint i have Lyme, too.

I wanted to do the DNRS / brain rewiring program, if it's lyme ive got. But if its LBD.... how can i buy into that? Its a progressive condition leading to death, rewiring my brain isnt going to be enough to stop it...

Anyway, any help is appreciated. This condition is so awful [Frown]

Posts: 38 | From NSW, Australia | Registered: Sep 2018  |  IP: Logged | Report this post to a Moderator
aklnwlf
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Welcome to Lymenet Oz! Glad you're here. I'm not familiar with LBD but have been treated for Lyme and Co's.

I'm much better after almost 2 years of orals and 4 months of IV therapy.

Currently being treated for Mast Cell Activation Disease and even though not working to free up time to care for an elderly parent, I was able to return to work full time.

Lymenet was and is a life saver for me. I received very little support during treatment from family or friends.

We're here for you and will help any way we can.

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 5258 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
hiker53
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OZ--I am unfamiliar with the abbreviation CPn.

Please don't think the worst. Just because a tiger has stripes doesn't make it a zebra.

If you have poor balance you may rock or shuffle your feet back and forth and I know I lean a little to one side because one leg is stronger than the other.

Sounds like your tests for LB were normal, so go with that and seek out a good LLMD for treatment.

Get a second medical opinion.

Keep the faith.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6959 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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It's pretty difficult to navigate when people don't know what they're doing with any of these health conditions! That includes medical professionals and family! We need to see Lyme-literate and health-literate professionals! And yes, we can get improvement when we're treating appropriately so don't give up!

Have you checked on available resources in your country? I found this website, with a list of national groups.

http://www.lymedisease.org.au/resources/

Also, if you concerned about parasites, people do parasite cleanses. You could research them, and ask here as well.

Posts: 13041 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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There is a lot of hope. Find the best LLMD you can get into treatment for Lyme.

They recently found that antibiotics helped Parkinson's patients. So that is a great hope!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95252 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
OzLyme
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Thank you so much everyone

(I wrote more before, but it said my IP was banned and I lost that post... I was at my friends house, so maybe that's why...)

Posts: 38 | From NSW, Australia | Registered: Sep 2018  |  IP: Logged | Report this post to a Moderator
Robin123
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You need to sign in with your password when you're at another computer.
Posts: 13041 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
overlyme
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i thought i had mad cow disease, thats how bad

I was..It was lyme! take the antibiotics for

lyme and work with another neuro as this one

does not believe you..i had severe myoclonic

jerks,twitching muscles, felt like the world was

tilted..eye pain and eye muscle problems..and

alot more..hang in there..

--------------------
been there done that!

Posts: 92 | From ny | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
   

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