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» LymeNet Flash » Questions and Discussion » Medical Questions » Non-LLMD's Offering me treatment

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Author Topic: Non-LLMD's Offering me treatment
Maia_Azure
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Hello,

So I see a few doctors for the many symptoms I have developed from Lyme/babesia.

I have been taking an SSRI for years, but it has failed to help me recently. I've felt like I am in a constant state of PTSD. Since my GP has always thought my fatigue was anxiety/depression related, I have been doing therapy. I am being switched to Cymbalta now, as it is supposed to help with muscle pain and fibromyalgia.

I am ok wit the Cymbalta, but another doctor wants me to either go on ADHD medicine (adderol) or nuvagil, which is a medicine that increases wakefulness.

I don't know, it would be nice to be more "alert" but nuvagil is used to treat people with narcolepsy and sleep disorders. I don't know about how I feel taking drugs to cover my symptoms.

If I refuse the meds, I get a lot of crap from Docs for not helping myself. Case in point: I refuse to use my sleeping machine for sleep apnea. Thus, I am still tired according to me doctor as I am not treating what she sees as my "problem."

I don't want to see doctors who don't believe in lyme, yet I don't want to ignore symptoms that I could treat, so I'm a bit unsure of how to proceed. I'd prefer to limit my pharmaceutical intake, yet I don't want to suffer more from my symptoms if unnecessary.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

Posts: 247 | From New Hampshire | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
GretaM
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I tried modafinil (akin to nuvagil) to help me stay awake for the daytime.

I didn't like it. But it has helped a few folks in my support group with babesia related fatigue.
it wore off really fast for me, like about 4 hours.

Then I had to take a sleeping pill at night...

I felt like I was like Alice in Wonderland. "This pill makes you taller, this pill makes you smaller", kind of thing. Haha.

Also, lots of us are on anti anxiety/anti depressents. Lyme babesia and bartonella do awful things to the dopamine and seratonin levels in our brains, not to mention hormones made by our hypothalmus.

Just be sure whatever you decide to take, you always always tell your LLMD and also your pharmacist.

The last thing any of us needs are side efects from prescription drug interactions. Haha.

We have enough probs as it is [Smile]

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Lymetoo
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I would not get on drugs (like Adderal) that are SO HARD to get off of. If you get on it and stay on it very long, then want to get off.... LOOK OUT.

Same thing with Cymbalta.

Be wise.

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

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Judie
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"I don't want to see doctors who don't believe in lyme, yet I don't want to ignore symptoms that I could treat..."

Some people I know with Lyme/fibromylgia and your psych symptoms do well on a low-dose of neurontin at night to help with sleep and pain.

Malarone has been a miracle for me with energy. Doxycycline was a better anti-depressant than any anti-depressant I ever took.

A lot of doctors only treat symptoms and ignore the underlying cause. I just nod my head at the appointment when a doc suggests something, then chose on my own what I want to follow. I take anything a doctor recommends as just a suggestion, not a command.

I hope you're seeing a Lyme literate therapist.

If you treat Lyme and babesia, some of those symptoms should become less.

There are many people whose fibromylgia symptoms leave pretty quickly after appropriate Lyme treatment.

Also, I have a friend who's bi-polar. Her meds stopped working and I suggested she get tested for Lyme. She scoffed at the idea for 2 years.

She then went to a Lyme doc and tested positive for Lyme, babesia and bartonella. It's no wonder the psych meds didn't work.

Everyone is different. Keep looking at your options til something sits right. It'll be easier to follow treatment if you agree with it.

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seibertneurolyme
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I would rethink the machine for sleep apnea. Hubby had a hard time adjusting to his CPAP, but once he got used to it he felt it was very helpful. Actually the machine may be able to retrain your brain to some extent or if you get treatment then you may be able to come off the machine in a couple of years as hubby did.

Sleep apnea puts a strain on the heart as well as interrupted sleep prevents healing and disrupts the immune system.

Bea Seibert

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Keebler
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-
Absolutely, if you have sleep apnea, to not treat it can be a very dangerous move. But it's not about pills, in fact, some sleep drugs can make sleep apnea worse, so can other kinds of drugs. It's even written in some of the Rx literature.

Did the doctors tell you to remove all fuzzy fabrics from your bedroom and to address dust, etc. That's step number. Clear the air, keep it smooth in there so dust has no place to collect.

Avoid wearing things like velour, corduroy, etc. If it makes any kind of lint or dust, it can stress your breathing.

Same for scents products and cleaners. Clear the air for better breathing to start with. Get plastics out of your bedroom, too.

Avoid any new textiles as many contain chemicals.

I know several people, many friends, who have done very, very well with the machine. They are so much better now than they used to be.


As for the non-LLMDs offering to treat you. No, they are not. Not at all, really.

They are offering to cover up symptoms, on drugs that are intended for life -- and can also severely damage the liver over time so more drugs would be needed to cover up more side-effects.

True, you need symptom relief and some of that is needed before you can get to a LLMD as that's not going to be tomorrow.

But, these drugs may not be the symptom relief we are led to believe. I did all that, a couple decades ago. Nothing work. Everything had side effects that were unbearable. Now, my body is just more sensitive to all those umbrella drugs than most so some people can find a certain level of help but they are still really hard on the body.

Rather than an "umbrella" drug that will just keep you sort-of dryer in a storm, for a bit . . .

I found that by addressing as many reasons of my symptoms as I could while also searching for ways to treat lyme, et. al., many symptoms improved far better for me than when all the "umbrella" drugs were pushed at me.

Nutrition is where you might start before trying any "umbrella" drug. Seriously, I was amazed that some changes I made also changed some really rough symptoms for the better. Enough that I could manage, at least, to get to the next step.
-

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Keebler
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-
To be clear, lyme and other tick borne disease (TBD) is so very often the direct cause of the symptoms you describe (as with me, and so many others found out).

The nutrition support is just that, support. Not enough alone but it can sure help along the way. As you wait to see a LLMD (which can be very soon, I hope) . . . and then to help treatment work as well as possible.

Where to begin: This may be daunting and it is not intended to be all read in one sitting.

I hope you will work through this, as least to know all the other things that influence our bodies . . . and get a sense of the power that real nutrition can bring. It may not be the entire ticket, but we can't get far without considering most of what is here.

There might just be one item in your fridge or pantry that, if avoided, could make a difference. Check labels for words you can't pronounce or words you don't know just what that is. Those things can make anxiety much worse by over-stimulating our brains. Detail:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all). Gluten explanations here. Gluten, alone, can cause depression and pain.


FISH OIL - a top quality can help within one week, in many ways. Just ask a bunch of New York City Cab Drivers - it helped them in a study, to be calm and cool. Really.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - LINKS sets


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.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
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[ 08-08-2014, 02:15 AM: Message edited by: Keebler ]

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Robin123
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Everyone's different in how we respond to anything. Like some are helped by neurontin, but I get a headache from it. Some get symptom relief from remedies and others don't.

My basic opinion is examine the source of the problem, which is Lyme, and see a Lyme-treating doctor for treatment.

Because as soon as I took an antibiotic, my fibro pain went to zero, after years of trying to treat the undiagnosed pain.

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Lymetoo
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I agree with trying out that CPAP!! Everyone I know who has one says it is literally (yes, literally) a life-saver and they FEEL SO MUCH BETTER on it!!

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

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Catgirl
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I would listen to your lyme doc first and foremost. They have seen and heard it all, and are the best guides for treatment, even with other issues.

I agree with the cpap, you need it. The brain does not function very well without oxygen.

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

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Maia_Azure
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The problem with the C-PAP is I failed the treatment. I Used it for about 3 weeks before it started causing me pretty bad lung pain and would actually wake me up multiple times at night. I have MILD apnea...so it became and issue of the machine woke me up more than the apnea!

I am going to try a BI-PAP machine, which I am not too excited about. My neurologist is perplexed as she said I have central sleep apnea, not obstructive. And it's too mild to be causing all my fatigue. But I guess the sleep machine can help a bit with central apnea..even thought the problem is not a physical obstruction..its a brain signalling problem..meaning its neurological in cause. I originally thought I didn't have lyme diease, it was sleep apnea..but that was short lived as treatment of the apnea did not make me feel better.

I am taking the cymblata as my depression is so bad I feel like I have PTSD at times. Just repetitive thoughts..it just haunts me. I took an SSRI for years..and only recently it just stopped working. I am going to do a neuro-pysch evaluation shortly..but these tests..they never tell me much..and the doctors just want me to continue trying more and more drugs..and I just can't even mention lyme disease to them. Its not even a possibility.

--------------------
Sick since 2000
Bulls eye 2005
Dx Babesia, Lyme 2014

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Keebler
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-
Why?

You say: " . . . going to do a neuro-pysch evaluation shortly..but these tests..they never tell me much..and the doctors just want me to continue trying more and more drugs . . . " (end quote)

Why do you keep going back?

I would not do that neuro psych test with anyone is not ILADS educated and 100% lyme literate. Seriously.

You say: " . . . just can't even mention lyme disease to them. Its not even a possibility. . . . " (end quote)

Then don't mention it. Don't talk to them at all. Don't see them at all. If they are not helping you, know nothing about lyme, it's not going to work in your favor. You have a choice. Keep running in circles, falling through their hoops, or find a doctor who can really help you.

Would you take a Volvo to a Volkswagen dealer? No. Your body requires someone trained in lyme. To see doctors who are not is no better than trying to talk a mechanic who only works on one kind of car into working on another. It just won't work.
-

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Lymetoo
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True. I wouldn't go back.

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

Posts: 96229 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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