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» LymeNet Flash » Questions and Discussion » Medical Questions » How do you go on?

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Author Topic: How do you go on?
richedie
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There are days when the pain is so bad and I feel so miserable, I don't care about my life any longer. I think the only thing that keeps me going is my daughter and my wife. I don't know what I would have done by now if it were not for my 4 year old. Some days I feel so low, like I'll never get out of this hell hole.

Do any of you see a psychistrist? Medical care is expensive enough without having to pay for a psychiatrist.

Sometimes I just go and cry in the bathroom or the first aid room at work. I want the old 'me' back so bad, but some days I have no fight left...

-Rich

--------------------
Mepron/Zith/Ceftin
Doxy/Biaxin/Flagyl pulse.
Artemisinin with Doxy/Biaxin.
Period of Levaquin and Ceftin.
Then Levaquin, Bactrim and Biaxin.
Bactrim/Augmentin/Rifampin.
Mepron/Biaxin/Artemisinin/Cat's Claw
Rifampin/Bactrim/Alinia
Plaquenil/Biaxin

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randibear
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i wish i had an answer for you. there are some days i don't want to get out of bed, but i do anyway.

i try not to think about the future and often really don't care whether i live or not.

i've sort of lost my will power after my mother died and the way i was treated....

not having anyone believe i have lyme has been the hardest part for me. and knowing that my mom had lyme and no one would listen to me, just drained me of all emotions.

i understand, i really do.

--------------------
do not look back when the only course is forward

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merrygirl
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I am so sorry. I have been there though. I do see a therapist and a NP (for meds).

It has helped.

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Geneal
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If not for my two young children (who also have Lyme)

And my friends here, and for the Grace of God...

Well, that is how I go on and on and on.

Just one little step forward at a time.

Sending you positive thoughts and prayers.

Hugs,

Geneal

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sixgoofykids
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I've been where you are.

I had the pain recently when my protocol was changed all around. I skipped one dose of all my meds,, then started taking the ones I had taken before, then added the new ones in one at a time.

Then I had it narrowed down to one med, , I started that one back at half the dose. I had half the pain. I stayed at that dose till the pain decreased, then I took a pill at the whole dose. I kept switching between whole and half doses as long as I needed. Now a month later, I'm on full dose consistently.

I think it's natural to want to escape the pain .... and it's good that you have someone worth living for. If you need psychiatric help, get some, It may be covered by your insurance.

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

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Lymetoo
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Keebler said,
"But, what I hear is that the physical pain and emotional pain are too much.

A therapist/counselor who is LL can be of great help, though, in letting you voice what's going on and coming to terms with how to approach it from an emotional/spiritual place.

You must have a place to express what you are experiencing. Holding it inside can be harmful so I hope you find what you need. And, there may be personal issues unrelated to lyme that, if addressed, would ease stress.

Again, your local support group can offer suggestions."

AGREED!

+++++++++++++

I would say most of us here are on antidepressants. I've recently tried to get off of them, to no avail.

I think Lyme has done a number on my brain. I've been off Lyme treatment for 3 1/2 + yrs, but still have the depression.

So, a counselor and some meds may be what you need. I saw a counselor way back when I first had to retire on disability. It helped.

My faith in God and a supportive husband is what has gotten me though this. No kids.

Hugs and best wishes coming from over here to you!!! [group hug]

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

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richedie
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Thanks everyone! I must go to bed, so I will try to get back and answer in the morning. Thanks all.

On one hand I am told my symptoms are MGUS related, although my hematologist says no, then some say I am too young to have MGUS related symptoms and my numbers are so low. The Lyme doctor says the Lyme could easily cause the MGUS or paraprotein spike, so maybe that is it. Then I am told by some, including what I read on the net that this is all psychosomatic and I need to forget Lyme and concentrate on suppressed and repressed emotions, UGH! I am still set to see Dr. L in MD next month.

off to bed....

--------------------
Mepron/Zith/Ceftin
Doxy/Biaxin/Flagyl pulse.
Artemisinin with Doxy/Biaxin.
Period of Levaquin and Ceftin.
Then Levaquin, Bactrim and Biaxin.
Bactrim/Augmentin/Rifampin.
Mepron/Biaxin/Artemisinin/Cat's Claw
Rifampin/Bactrim/Alinia
Plaquenil/Biaxin

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cantgiveupyet
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pleas hang in there, july will be here soon enough.

I go thru periods of time where I get down too, but then I think of how far I have come. You will get to this point to, you just arent there yet.

I think you will feel better after your LLMD appt, and get the testing done and treatment started.

Just hang on to one thing that means the most to you right now and hang tight.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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Tracy9
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Rich,
Please, please consider an antidepressant. I know there are people here who will not agree, but they are pretty safe and can help IMMENSELY.

If not for my Cymbalta, I would be in the same boat as you. But with it, I feel pretty good emotionally. I couldnt' handle it if I had to feel depressed on top of this, been there and don't ever want to go there again.

An antidepressant can make a HUGE difference, one that you cannot get anywhere else, not from supplements, not from therapy.

Those are important to do as well, but with medication you can feel 100% better in two weeks or so.

We take pain meds when we are in pain, why are we so reluctant to take an antidepressant when we are depressed?

Your brain chemistry switch gets broken. It cannot right itself. The medication rights the levels of seratonin. You feel much better.

I hope you will give it a try. I hate to see people suffer when there is no need to. I know a LOT of people whom antidepressants have helped beyond words.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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psano2
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Rich, I know how you feel. I've been feeling the same way recently. I'm just so tired of feeling so miserable and having my eyes and brain droop constantly. But at least you have your family. It's worse when you're alone. I'm alone and sometimes I feel so lonely and sorry for myself that I can't stand it.

However, I got a call from an old friend today, someone I used to work with and learned that one of my former co-workers, in one week had first been diagnosed w/a DVT (deep vein thrombosis), multiple PEs (pulmonary embolisms), then stage 4 gastric cancer. They told him that he had about 6 months to live, maybe 10 months w/chemotherapy.

Talk about changing your perspective. I hadn't spoken with him in years and my friend encouraged me to call him, because we were always friendly, in spite of his curmudgeonly manner.

So this evening I called him, and was amazed to hear him sound like there was absolutely nothing wrong. He almost sounded happy! He said that there was nothing he could do so why fight it? It was better to be positive than negative. But as I talked with him I realized there was more to it than that.

I realized that he was surrounded by people who loved him...his wife, his nephews and nieces, brothers and sister, his wife's family who'd flown in from the Phillipines to be with them.

He and his wife married too late to have children, but he'd practically adopted his nephews and nieces. One of them lived with him and his wife. He took them on vacation last year to Yellowstone and talked about how much the kids loved being with nature and away from the big city.

When I worked with him about 20years ago, there was a side of him that never seemed really happy, but that was before he was married. Having a happy marriage really seemed to improve his outlook on life and relations with his family.

In spite of the fact that he's facing death soon, I actually started to envy him for the loving relationships he has that I don't. And in a way, it made me feel ashamed for the self pity I felt for myself.

My friend, John, was very understanding about my situation. He said, "I've only been dealing with this since April. I'm sure I wouldn't feel the same way if I had to do it for 3 or 4 years."

Yes, we're miserable, but I'm pretty sure we're not going to die within the next 10 months. We have to hang in there. You have to hang in there for your family. I have to hang in there in the hope of finding love before I die. I still have time, in spite of this disease. I just have to give it a chance.

Don't give up. New therapies and drugs are being developed which may have the answer for us. Others have beat it, so we can too.

Patti

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groovy2
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Hi Rich--

I used to think about doing my self in Many times aday-I have Lyme and Babs-

I even had to go as far as setting up a way to do it- and Many times I would have but I was to sick
to even stand up much of the time--

Now after treatment I feel Perty Good and am getting back to having a life again -

I was sick for 20 Long years and was in Horrible
non stop pain -
Now I am Pain free and am just tired some times-

You Can get Better - I Have -
So you can Too-Jay-

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Keebler
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-

Rich,

the main reason this has gone on for so long for some of us is that we did not get treatment. the earlier one is treated the better the chances and the shorter the treatment.

so, remember that when you hear some of us mention how long we've been working at this that relatively few got correct medical care. that's one reason we shout so loud for those new to this to get the best care they can.

-

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roro
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the only thing tha t going to a psychiatrist did was make me more angry.

to insinuate that this disease is somehow caused or even worsened by any kind of emotional flaw in ME is both insulting and naive.

this way of thinking feeds the denial of this disease and lets the people responsible off the hook.

the fact is, the field of medicine is so behind where is should be with all the research money that has been poured into it and all the lives and careers wasted it is apalling.

I am sickened and disgusted at the barbaric treatments that are used in medicine, the ignorance, the denial, and the incompetance of both clinicians and researchers.

I am a scientist in the "hard" sciences (physics) and have worked in the fields of engineering, mechanics, aerospace, nuclear, power engineering, controls, instrumentation and many other fields.

I never realized how much BS surrounds the field of medicine and how far behind we are than where we should be. If I had known how things were I would have gone into medicine instead.

anyway, I am sure my rant has gotten WAY off the topic. my point is:

You have a REAL PHYSICAL disease, that needs to be treated with REAL PHYSICAL treatments. If psychiatry helps in any way, it will be totally by accident, because the whole field of psychiatry is based on trial and error, there is no science behind it, no mechanisms by which the drugs work.

we should be looking for causes of disease, defining the mechanisms, and choosing a medicine that will alter the mechanism, not just throwing drugs at symptoms haphazardly to see what works.

if there is some reason why emotional stress causes disease, it is because of stress hormones being released, and those need to be studied and discovered how to stop them with medication, diet, behavior modification etc.

if someone has an inability to deal with their emotions, like anger, anxiety, etc, then maybe psychology can be helpful with that. but just supressing emotions is dangerous. its best to channel that anger into getting something done.

I will step off my soap box now.

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abigail
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From all this, I've learned that there is someone in this world who really hates me and has his followers, both willingly and unknowingly. I must remind myself that there is someone else in this world who loves me with followers also. I guess I needed to learn that. Before, I trusted the world. Now I know that not everyone in it is trustworthy. But some are.

--------------------
Dying is easy. Living is harder.

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NanaDubo
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I see a psychiatric nurse practitioner who is more than willing to give me meds for anxiety and/or depression. She almost always mentions some natural alternatives to try as well.

Mostly, she is just there to listen and is a safe haven for me. Sometimes I leave a message for her that I need to just cry and have someone listen and she always makes time for that.

She readily admits that she doesn't know much about LD but when I emailed her the link to watch the trailer for "Under Our Skin", she wrote right back and is interested in learning.

I think this kind of person is needed by all of us. Even those who have loving and supportive family members can be helped a lot by someone not so close.

I definitely agree that there is a time and place when anti-depressants or anit-anxiety meds can be oh so helpful.

One of my best friends is a psychiatrist and also this country's leading expert on the work of Wilhelm Reich and orgone energy.

I get lots of free advice from her (with no record attached). Not all psychiatrists are bad.

None of this is easy and I know how you feel.

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sixgoofykids
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quote:
Originally posted by richedie:
this is all psychosomatic and I need to forget Lyme and concentrate on suppressed and repressed emotions

This was the diagnosis I got right before I figured out myself what was wrong. I took the IGeneX kit to the doctor who diagnosed me with Somatization Disorder and asked her to run the test. The ONLY reason she did was to show me that it was all in my head so I could move on and take care of the repressed emotions.

Even when it came back with 8 positive IgG bands she stood by her diagnosis. Fortunately I already had an LLMD appt.

This diagnosis even irritated my LLMD. He said that he could tell I was crazy the second I walked in the door (joking), then said that that lady really needs to brush up on her diagnostic skills.

I don't think this is an unusual comment made to Lyme patients .... the other bothersome diagnosis is that we're hypochondriacs.

Don't listen to them ... they're ignorant.

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

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richedie
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I am told if I had Lyme, I would be so tired I couldn't get out of bed. The fatigue and enegry levels, mental stuff really has not been bad at all. Fatigue was bad the first month i had symptoms but since has been good. Lats few days it has been bad in the afternoon though. My biggest things are issues with my feet, mostly the right foot, floaters, pain in my left wrist and hand, a lot of the other stuff has dies down......so people act like, well, see, you are getting better with no treatment! It can't be Lyme they say......and the only thing Dr. F in PA gives me is diflucon! I still workout and take walks so it ishard for people to understand how it can be.

--------------------
Mepron/Zith/Ceftin
Doxy/Biaxin/Flagyl pulse.
Artemisinin with Doxy/Biaxin.
Period of Levaquin and Ceftin.
Then Levaquin, Bactrim and Biaxin.
Bactrim/Augmentin/Rifampin.
Mepron/Biaxin/Artemisinin/Cat's Claw
Rifampin/Bactrim/Alinia
Plaquenil/Biaxin

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sixgoofykids
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Why aren't you being treated? Does your LLMD say it can't be Lyme?

The foot stuff sounds like bartonella.

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

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Keebler
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-


http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


- cont'd at link.

Printable version: www.ct.gov/ag/cwp/view.asp?a=2795&q=414284&pp=12&n=1


-

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Clarissa
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richedie,

I empathize with your emotions 100%. I don't have a child but I have two beautiful dogs, a bunny, a loving niece and nephew, supportive brother, parents and friends.

Psano: Upon listing my support group, I want YOU to know that you have all of US on Lymenet and somedays, honestly, my peers on this board comfort me more than my own loving family.

Unfortunately, no matter how many caring people we have around or children, or animals, etc, ultimately we ARE alone with these diseases. WE are, the only one that can feel the emotional and physical pain.

They can empathize but NO one can come inside my tortured Bart brain and know how cruel it is to me...how much it effects my self confidence and how much anxiety, fear and turmoil it causes.

At the highest doseages of Rifampin and Zith for my Bart treatment, I actually planned out a suicide...go in my car in the garage and turn it on with all doors shut.

My mother begged me to lower my doseages, so I did and the edge went away and I was grateful to be here again.

I won't lie to you. Knowing I can kill myself actually comforts me. It's the ONE thing I can control. So each night, when I've made it through the day, may it be productive or sleeping all day, I thank God that I made it through. Seriously, one day at a time.

Now I am in remission (with some flares here and there) and I'm in therapy to help my self-esteem and the emotional aftermath of this hellish storm that's been inside my body since I was a child.

I also take anti-depressants AND anti-anxieties and I HIGHLY recommend them, even if it's just while you're going through treatment. It may just be a band-aid but it's a necessary one for this time in your life.

Keep looking at that beautiful 4-year-old and just face ONE day at a time and be proud when you tuck yourself into bed at night that you made it through another hellish day that will lead you to your path to health and freedom.

Bless you,

--------------------
Clarissa

Because I knew you:
I have been changed for good.

 -

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Peacesoul
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Clarrisa, great post. Thanks for sharing.
I feel exactly the same. Many days I would plan how I would go into my garage and just start my car.

This illness, in fact ANY illness, plays on the mind of the sufferer.

However, I'm still too scared to take an antidepressant for fear of withdrawal or dependence.
I'm tempted though

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TerryK
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I can relate to how you and others who posted in this thread feel. I've been there too.

quote:
I am told if I had Lyme, I would be so tired I couldn't get out of bed.
Lyme waxes and wanes. It is known to go into remission when the immune system is working well and when not, you can be very ill.

I've been sick for decades and during that time I've had various levels of functioning. From almost normal to very debilitated.

I assume Dr. L. is an ILADS LLMD? A very good idea to get another opinion if you have any doubts. Hopefully this doctor will look for viruses, typical co-infections and anything that mimics lyme.

Wishing you the best,

Terry

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psano2
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Clarissa, thanks so much for sharing. I guess I haven't really thought about the board as being there for me, but I'm glad you pointed it out.

This IS the place I where I spend a lot of my time online every day since none of my friends or family really understand how I'm feeling. It's good to know that it's not just me.

I take an antidepressant and an anxiety med too. For me, the anxiety med (I take Ativan) REALLY helps a lot. For some reason, I've been more anxious this year than the previous 3 years. I'm not sure why. I think part of it is that as time wears on and I continue to wax and wane, I start to lose hope of ever beating this thing.

But we have to keep hope alive. I agree w/Clarissa, there's no shame in using one of these meds to help us get through this. This is an incredibly difficult illness.

Thanks everyone.

Patti

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richedie
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Thanks everyone, I am tired and need to get to bed but I'll try to go through some things.

I am seeing a doctor F in PA for the second time tomorrow. He has me on only 50mg of Fluconazole. After 3 weeks if no change he has me doing no sugar and fruit, etc. After another 3 weeks, he said I should stop all carbs.

I see him tomorrow.

I see Dr. L in MD next month fora new opinion!

I am not on any specific supplements from the doctor.

Dr. F said I have a rash on the back of my neck which indicates an infeciton.

I am not sure I notice huge Lyme cycles though....maybe a little! Is that odd. I always hear the cycles are distinct. I mena my feet get bad and then good, etc but my hand has been getting worse over months.

--------------------
Mepron/Zith/Ceftin
Doxy/Biaxin/Flagyl pulse.
Artemisinin with Doxy/Biaxin.
Period of Levaquin and Ceftin.
Then Levaquin, Bactrim and Biaxin.
Bactrim/Augmentin/Rifampin.
Mepron/Biaxin/Artemisinin/Cat's Claw
Rifampin/Bactrim/Alinia
Plaquenil/Biaxin

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cantgiveupyet
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I was so sick at first I didnt notice cycles. i didnt start to notice them until I started feeling more functional.

good luck tomorrow, maybe you can convince him to give you some abx.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

Posts: 3156 | From Lyme limbo | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-

Rich,

Lyme rashes are not all the same. However, you've been dealing with this for a long time. Whatever you have on your back, then, I assume is new ?

Bartonella (rash) is also a possibility as many here have mentioned.

Again, co-infections must be considered. the diet approach, while helpful is not going to properly address tick-borne infections.

PLEASE read the guidelines at the ILADS site - www.ilads.org

AND - I may get big white potatoes thrown at me for this, however, if one is on Diflucan, going NO carbs can be dangerous.

I can't believe your doctor meant NO carbs, but maybe low carbs or only complex carbs?

Now, the reason why being on Diflucan and NO carbs can be dangerous is that Diflucan requires the liver detox pathway Cytochrome P-450 . . . so, when that pathway is pushed it can produce excess porphyrins.

Excess porphyrins can be toxic. Glucose or beta carotene are two things that help prevent that. Also, your brain requires glucose - from whole foods via carbs.

Trying to be NO carbs can deprive your brain of fuel and miss out on needed vegetables and dark (low sugar) berries that have great antioxidants and help our bodies detox.

NO carbs leaves you with just protein and fats. Even the best of those is not proper fuel mix for any body.

I can't go further into that right now.

Good eating habits are important but they will not cure infections such as these alone. I think your doctor is focusing more on fungal infections, which can be harsh all by themselves.
So, ask his philosophy about this. He may know something he is not telling you about his plan.

Ask your doctor who he follows regarding treatment. Can you get a copy of the articles he considers key ?

Is he is familiar with the ILADS treatment guidelines - take a copy for him.

Again, Singleton's new book on lyme is very good. It would help to cover some of the basics.

Good luck.

-

[ 12. June 2008, 11:07 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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What I've found is that I cycle between feeling helpless and hopeless about symptoms, and then finding something that treats them. And it's always a surprise and something I won't know if it works unless I try it.

Like, I've been taking a homeopathic remedy for three months now, pulsatilla, that ended depression overnight.

And just this past week, I'm finding that noni juice and grape seed extract powder are starting to shrink the lipomas (fatty tissue tumors) I've got.

What I'm getting at is you won't know until you try treating what's going to make you feel better. I think there's something for everyone - we just have to find it. This is a slow-rescue process.

And our predicaments here are physical ones, not psychologically-caused ones.

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InADaze
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There are psychiatrists out there who treat patients with Lyme as a focus or part of their practice. And, of course, there are tons more who will give you a line of BS.

I had a long e-mail conversation with the husband of a friend of mine who treats Lyme patients. It was very enlightening (though frustrating because some of the info he gave me was hard to understand.)

Before spending the money on a psychiatrist, make sure you ask them if they have treated anyone with Lyme. Get a feel for whether they will be a duck.

It's not just about depression either. They can also assess cognitive issues and provide appropriate treatment recommendations.

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richedie
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Well, I saw my doctor last night and he upped the Fluconazole to 100 mg a day and also added a medication for my weak thyroid, all of which could help me feel better. He said he would give me abx if I wanted, but he said he has been treating for 10 years and this Fluconazole treatment has been the best he has found because it introduces less in the way of meds such as abx unless absolutely necessary. I think he follows more to Dr. S (Lyme doc and researcher from Germany?) than Dr. B in NY. He doesn't seem to agree a lot with Dr. B. ideas.

He said, even with the abx you can't ever fully eradicate the bacteria, only knock me down so to speak and when you stop the abx, symptoms will return. I am confused but I get hopeful everytime I see a doc for somereason.

He still wants me to follow no fruit, sugar, simple carbs, no wheat, refined carbs, eat mostly lean chicken, eggs, fish, lots of veggies, and try to avoid all grains, rice, legumes, etc. I can eat thinigs like bucwheat it appears. Since the bacteria is a simple organism it needs to be startved to help get under control and weaken.

--------------------
Mepron/Zith/Ceftin
Doxy/Biaxin/Flagyl pulse.
Artemisinin with Doxy/Biaxin.
Period of Levaquin and Ceftin.
Then Levaquin, Bactrim and Biaxin.
Bactrim/Augmentin/Rifampin.
Mepron/Biaxin/Artemisinin/Cat's Claw
Rifampin/Bactrim/Alinia
Plaquenil/Biaxin

Posts: 1949 | From Pennsylvania | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
   

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