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» LymeNet Flash » Questions and Discussion » Medical Questions » advice needed

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Author Topic: advice needed
calicarli
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I am seeing a LLMD for lyme and babesia I am on doxy broke out in a rash on arms and face, so I stopped taking it as my family MD suggested. About a month later I felt as if I had been drugged I felt as if I were in a dream state could hear myself talking forgot who my family was and my own self. Took myself to the er and stayed in the hospital for about a week. Test after test they found I have lesions and swelling on my brain, they could neve figure out why. Possible ms,or stroke. I am going to see a neurologist next week. I kept telling the Dr's it's probably lyme related they are trying to convince me that igenex is a joke and I don't have lyme,they can't convince me! Just need advice on what I should do if I'm told I have ms. Thanks [bonk]
Posts: 21 | From california | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
Lymetoo
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You find an LLMD who knows how to diagnose and treat Lyme disease....


Info on MS and Lyme:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/132828#000001

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--Lymetutu--
Opinions, not medical advice!

Posts: 94593 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
calicarli
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Yes he is a LLMD who is treating me for lyme and Co infections, I found him from this site. He wanted to start with the antibiotics to see how my body responded. I need to go back but my apt. With him was while I was in the hospital need to reschedule but can't get on my feet,very dizzy with nausea and severe headaches,all from a spinal tap I had. Trying to recover so I can get on a natural remedy.thanks for the article I'm reading now.
Posts: 21 | From california | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
Eight Legs Bad
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Hello,

I dont know if your MS is caused by Borrelia or not, but there is mounting evidence for a role for Borrelia in causing MS.

Please see

https://durayresearch.wordpress.com/our-work/multiple-sclerosis-2/

The links from that page show micrographs which prove the association and are much more un-contestable evidence than antibody evidence from Igenex.

Recently Dr Alan MacDonald has detected neamtode worms in the csf of an MS sufferer. He believes that both Borrelia and worms could be factors.

Elena

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Justice will be ours.

Posts: 786 | From UK | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
calicarli
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The Dr's tried to convince me that because of no antibodies of borrelia were found in the spinal fluid that I'm negative. Cdc from igenex was positive. With high numbers, I'm not convinced! Also my white blood cell count was dangerously low. Maybe from the factor 8 I have von willlebrands disease. Not too sure but not going to let a ms diagnosis convince me other wise. Still treating the lyme first. Also am being told by my endocrinologist to have my thyroid removed due to chronic Graves disease. Any input on this?
Posts: 21 | From california | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I would get back to your LLMD instead of going to various doctors so that one person who believes you have Lyme can treat all these conditions.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
calicarli
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Oh I am! He's the only one I go to for the lyme treatment. I have a hundred other health problems that I see my family doctor for. Just not the lyme and friends.
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Keebler
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you " have a hundred other health problems that I see my family doctor for."

That GP will no be able to address "a hundred other health problems" as they are all likely due to lyme, babesia &/or other coinfections or connections.

IMO, for anyone who has lyme - no doctor who does not know all about lyme can help them. Lyme changes everything about the body. Ask your LLMD for suggestions in a GP.

All symptoms should be on the list for your LLMD to take a look at. If there are things that are not related to your work there, they can guide you as to who else to consult.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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you are " going to see a neurologist next week"

- you might ask your LLMD if that is necessary. It is likely not and will very likely do no good. What do you expect of them? I don't see how they could help at all, really.

Many of us here have seen many neurologists only to be rather kicked in the teeth with no help at all but also sharp criticisms and damaging roads that led to nowhere because the were clueless about lyme.

you already have detail that explains what is happening. You are seeing a LLMD with a plan to restart treatment with a different approach than last time. If you require additional expertise, the LLMD should be the one to guide how that should be pursued.

Also connect with all the area lyme support groups - physically and online. Be sure any doctor, any group is ILADS "minded" & "educated" so to speak.

Look for the online support link here for your state:

www.lymedisease.org

Be sure liver support is on board.
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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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Back to that neurologist's appointment you have next week (that I suggest cancelling). Be VERY careful with anything they suggest such as doing a spinal tap / lumbar puncture -- as that is NOT at all helpful for lyme diagnosis, very rarely can it "see" lyme, not worth the risk --

and many neurologists who stop at the "MS" diagnosis (and don't consider lyme as the cause) will give steroids. You do not want to do that:


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
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Jordana
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I'm glad you got to the hospital and got this information about your brain.

Of course it's from Lyme.

When you took the doxy and stopped you probably sent all the little critters into stealth mode and experienced new symptoms.

You don't really need to say anything if you're told you have MS. You know it's not true. And even if it was true, you are already treating your "MS."

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Catgirl
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Lyme, lyme, lyme and co infections. Lesions on brain/swelling, memory loss and much more are all quite common with lyme and company.

Like Six and Keebler said above, don't waste your time on NON LLMDs with the other stuff. It's lyme and company, and the lyme docs have seen it all. They can help you if you let them (key). Also agree with Jordana.

Eventually lyme patients discover how lyme and company can affect so many areas of the body. You should read: Cure Unknown (Weintraub). Also Doc H's book: Why Can't I Get Better.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Catgirl
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Cali, you're not new to this forum. Where have you been for four years? Are you for real? Just checked, you were posting for your wife before. Something is off here. Hmmmmm (troll).

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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sixgoofykids
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quote:
Originally posted by calicarli:
Oh I am! He's the only one I go to for the lyme treatment. I have a hundred other health problems that I see my family doctor for. Just not the lyme and friends.

Your Lyme doctor should be able to treat all of it. Likely, all your issues are related anyway. That's what I was talking about, let your Lyme doctor know all this stuff. Mine treated thyroid, parasites, metals, etc.

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sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
calicarli
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I'm trying to get to my lyme doc. It's a 2 hour drive and am not able to drive at the moment due to the after effects from the spinal I had in the hospital. Trying to rearrange something with a family member. I was doing so.good for so long is why I haven't been on the board. It just seems to bring me down to read about new lymees and everyone is always so sick sorry for that but it's true. I know it could be good for me, but with life and children and just life it's hard to do. Just had my husband figure out how to get it on my phone so I'm back. I was just ridding myself from the stress of having so many health problems I had to let it go for a year. Wasn't the best idea because it landed me in the hospital. I was just going in circles and spending a lot of $ at the LLMD with no relief. So new year new start my goal is to get as healthy as possible and put the lyme at bay! Thanks for all the support it is amazing what people can do!
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calicarli
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I've been using my husband's account for 4 years because I couldn't remember mine and our emails are switched to each others accounts for some reason. Now I've got it all figured out! Yay! Thanks to him.
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Lymetoo
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quote:
Originally posted by calicarli:
[QB] The Dr's tried to convince me that because of no antibodies of borrelia were found in the spinal fluid that I'm negative.

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Bunch of BULL .. a spinal tap has a 20% chance of finding Lyme. Period.

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--Lymetutu--
Opinions, not medical advice!

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bluelyme
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Cpnhelp.org. ..c pnumoniae one of the organism behind ms..protocols are similar...it is often over looked coinfection /opportunistic intercellular bacteria in lyme complex...bvt has been implicated tx in both

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