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» LymeNet Flash » Questions and Discussion » Medical Questions » writing in for my wife..need lyme veterans advice plz?????

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Author Topic: writing in for my wife..need lyme veterans advice plz?????
calicarli
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Member # 38582

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ok,,so long story short, shes been diagnosed with

lyme couple yrs ago, from igenix and cdc pos, doc

thinks shes had it for long time,, 31 yo, she has

hyper thyroid, graves disease,, the same i think,,

anyways she has been experiencing what i consider

to be lyme brain,, ive been on this site for

years,,just lost password, anyways she went to the

e,r they said her symptoms were serious sounding,,

symptoms were,, loss of vision rite eye and severe

brain fog,,lil forgetfullnes,, it scared her she

thaught she was having a stroke so did the e,r,,

im the one of the ones always complaining about

depersonalisatin, brain fog anxiety,, you no all

the stuff,well shes never experienced the neuro

stuff i live it everyday,,sooo anyways ive told

her in the past but she wasnt listenig, but never

get steroids when you have lyme,, well she forgot

and let them give her iv steroids,, and also a

spinal tap,,ugghh,, shes doing worse than when she

went in,, if im correct they said white blood cell

count was low??? and pos, m.s. uuuggggghhhh i hate

our ignorant medical drs,,,i no i no i no,, so

rite now she has the worst post lumbar

headach,,aka spinal tap headache,,very very bad,,

also nausea and dizziness,,, any advice would be so

thankfull and appreciated,, just at home over the

counter understandable suggestions plz,, any ideas

to counteract steriods and headache pain relief,

anything guys anything u can think of,,,, thank

you to everyone that reads and replies thnk u

Posts: 21 | From california | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
poppy
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Is there any need to do a blood patch? Sometimes this is required in a spinal tap that doesn't work out right. I'm not recommending it, just mentioning it.

Maybe read this stuff:

http://www.webmd.com/pain-management/pain-management-spinal-headaches

Posts: 2888 | From USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
TF
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Antibiotics are the only thing you can take to "counter" the steroids. You want antibiotics that are effective against lyme disease.

Regarding the headache, she should lay flat, don't elevate the head. Do this until tomorrow. It can help stop the leaking of the spinal fluid out of the hole they made.

If the leak stops on its own, then the headache will go away. I laid flat in the back of the car all the way home from the hospital and all evening the day I got my spinal tap.

I also suggest you call the doctor about the headache. I understand that the blood patch totally takes the headache away. The doctor can tell you how long to wait before getting the patch.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
calicarli
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Thnk u guys..please keep the suggestions coming..what do steroids do when u have lyme?? And what should we do if severe headache continues thnx so much
Posts: 21 | From california | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Ask for a blood patch if it continues. God bless!

Steroids can make the lyme worse. [Frown]

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

Posts: 94593 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Tincup
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Sorry to hear about your troubles. Very sorry. Here is a site that has some military information. Hope it helps.

https://sites.google.com/site/americanlyme/

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20320 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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Yeah, I've heard that she should lay flat too -

No steroids. The trick will be to find out what remedies she's going to respond to. We're all different when it comes to how we respond to anything. Is she working with a Lyme-treating doctor?

Re the vision part, I drink mangosteen juice to stop my Lyme eye symptoms. It's an anti-inflammatory juice. I like the Mango-Xan version as it's the most tart. You can find mangosteen juices at the health food store and online. I drink around an ounce a day.

Posts: 12969 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Blymey919
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That's scarey, sorry to hear.

This link provides some info regarding your Q about steriods with Lyme infection -
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=14

Per the headache, caffeine can really help and often results happen within few hrs. If the headache is not better in 24hrs then definitely contact your doctor about doing one of the following:

- Epidural blood patch.
Injecting a small amount of your blood into the space over the puncture hole will often form a clot to seal the hole, restoring normal pressure in the spinal fluid and relieving your headache. 

This is the usual treatment for persistent spinal headaches that don't resolve on their own.

- IV caffeine.
Delivered directly into the bloodstream caffeine helps relieve spinal headaches by constricting blood vessels within your head.

All the best to you and yours, hope relief comes soon.

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hopingandpraying
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Is your wife under the treatment of a LLMD (= Lyme-literate doctor)? If not, contact poster "Robin123" for names in CA.

Dr. B's Guidelines are the "gold standard" for Lyme treatment. Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Look on page 4 regarding steroids:

"The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.

More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.

This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."

Posts: 8707 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Brussels
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OMG... I sent you a message.

My advice: avoid antibiotics (anyway, you are asking no prescription drugs).

Go for cleaning remedies and herbs.

Cheap and efficient binders: clay and MSM.

Herbs: just buy Buhner's book and start.

Antioxidants: C-salts (vit C) or megahydrate.

My favorite binder is chlorella.


Some people here in this forum are in antibiotic cocktails for years, some more than a decade and are still suffering from lyme.


Antibiotics are not the ONLY solution. I fully disagree with that.


I took them for less than 2 months, and so did my daughter. ABX weren't the solution, but made us worse because it messed digestion and remedy absorption.

We are still being bitten by ticks, every single year, many times. But lyme does not come anymore for more than 5 years.


If you see my thread on the Swiss clinic called Paracelsius you'll see that some medical doctors are totally against antibiotics for lyme. They think that pushes patients to become even more chronic.

In Switzerland and Germany, there are alternatives to abx, most NON prescription remedies, and many recover.


the main problem is elsewhere than mainly the bacteria.

Here in the area I live, 90% of rural population are Westernblot positive, according to dr. Rau!
Most are healthy, and only a tiny percentage from them are chronic lyme sufferers.

It is not the bacteria ONLY making people ill.

Eating an allergy-free diet, cleaning the body will take you farther than decades of antibiotics.

Buhner's herbs are a good alternative too.

Of course, this is just my non-medical opinion...

Posts: 6190 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Silverwolf
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Hello <<<<< calicarli and wife >>>>>,

Hoping things are calming down for you and your wife.

I had the Spinal/Lumbar tap and a Mylogram in mid 1970's,and again early 80's. And have had to take the steroids, mine was oral for two weeks. It was well before I ever heard Lyme and Co's.

The Lyme Brain fog and confusion is so frustrating, and so often regular testing shows nothing of help, w/ non ILAD's doctors.

Thinking of you both, prayers going up, with hopes of this calming very soon.

Jus' Silverwolfi

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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