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» LymeNet Flash » Questions and Discussion » Medical Questions » What if you don't get better?

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Author Topic: What if you don't get better?
richedie
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I am already starting to think of next steps.

I am not beteer and the pain, symptoms and all around suffering even after a year of treatment is becoming too much for me to withstand.

Have any of you gone to heavy pain killers? I am already thinking about a pain clinic or something to help.

I feel like I need a morphine drip 24/7.

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

Posts: 1949 | From Pennsylvania | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
klutzo
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Dear Rich,
I had to think hard about whether to answer you or not, since I expect others will come along and blast me for saying things that may depress you.

I want to emphasize that I think you should not be depressed by my response. Keep in mind that I am probably one of a very small number of people on here who have had NO antibiotics aka ABX for my Lyme.

I am assuming that you are getting some ABX, so there is a good chance that you WILL get better. My answer is to let you know that there is hope, at least regarding the pain you are upset about, if you do not improve.

I've been sick with this for almost 24 years now. From what I've read and personally experienced, it moves through four stages when a person has no treatment, and presumably unsuccessful treatment would be about the same.

When I was in stages 1 and 2 my pain was so bad that I was constantly in tears. I would go in the bathroom, turn on the sink and shower to drown it out so my husband would not hear, and cry my eyes out, scream, and bang my head against the wall. I could not understand how anyone could feel such pain and still live.

All I could get from my doctor was a small amount of Darvocet, a very mild narcotic that is mostly Tylenol. It did help enough so I could get some sleep, but I became dependent upon it, despite the small dose.

I do not say that to discourage you from asking to take some pain meds. Untreated pain can cause big problems with sleep, immunity and longevity, not to mention mood, so please do get help. Pain is now considered the 5th vital sign.

My Pharmacist told me that the tendency to become dependent or addicted to medication is genetic, and if your first degree relatives have no type of addictions, you may have no trouble at all with narcotics.

4 1/2 years of severe herxing from herbal treatments caused even more pain. I went through early menopause (at least you don't have to deal with that!) and the loss of estrogen aka the "niceness" hormone, plus the pain, made me nasty and short-tempered.

Then I went into stage 3, in which Borrelia concentrates on attacking the brain. Freedom! The pain was and still is almost gone! Why? Because the brain has no nerve endings.

I did cold turkey withdrawal from Darvocet after taking it once or twice daily for 12 years (this is very dangerous, but I did not know it at the time...it was hell. Always taper narcotics!

I have not taken so much as even a plain Tylenol since then, and it has been 13 years now. In the early stages, which is where you are after only one year, I would double over and burst into tears if I tried to vacuum just one room. Now I can vacuum my whole house and then mop it all too, without pain.

Other problems have taken the place of the pain. I get Lyme rage if I don't take pregnenolone, I can't remember anything recent, have typing and math dyslexia, mix up words, can't remember anything I read, can't multi-task, and have many other brain symptoms, but pain is not even on my top ten symptom list any longer.

Over all, this answer may seem depressing, but it is good news about pain, which is what you asked about, and remember that I've had no ABX, so my illness progressed, though herbs slowed it down a bit. Hopefully, ABX will keep you from ending up like me.

Best of luck to you and hang in there,
klutzo

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catskillmamala
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One year may seem long if you are in pain, but it is not long for treatment. I thought 1 year was enough, but for me it wasn't. It's now been 2 years tx.

If the pain is really unbearable, might I recommend acupuncture. It doesn't provide lasting relief, but I have seen it give others in my lyme support group a couple of good nights of sleep by relieving pain.

Just a thought. Hang in there.

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lymebytes
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Pain lowers immunity..fact.

I have had total (head to toe) body pain in in nerves, muscle, tendons, you name it. Without pain management, I doubt I'd be here.

Although no pain med gets rid of LD pain entirely it can help you tolerate it a little better.

--------------------
www.truthaboutlymedisease.com

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Snailhead
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Your body cannot heal if you are in pain. There are a few combos (Neurontin, narcotics, Cymbalta, Lyrica, etc.) that may prove beneficial for you. I would see a pain management dr if I were you.
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richedie
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I can't afford a pain doctor and my LLMD.

--------------------
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
TO LIFE
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Dear Richedie,

What exactly are yor pain levels? Do you have bone, neuro, muscle etc..?

I was in very rough pain, I was even oftered Ketamine IV.

Today I am no longer on pain meds., I have just started MSM which seems to be helping me.

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just jan
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Hi Richied,
I would talk to your LLMD. I am surprised the LLMD doesn't work with you around your pain levels. There is so much written on pain levels and interference with healing. You deserve humane treatment!!!!!
Blessings,
Just Jan

--------------------
I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan...
bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.

NICENESS COUNTS!!

Posts: 61 | From orange county new york | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
WildCondor
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Can you post the doses that you took of the meds you took?
Why isn't your LLMD giving you pain medicine?

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paulieinct
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You may find that taking a narcotic pain reliever may break the pain cycle for you. Myself I have experiened pain relief for several days just by taking one pain pill. You need to interrupt the pain cycle with something.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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Need Lots of Help
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My worst symptom was/is/and may be always the fatigue. However, I am now having pain more than I used to. It used to be twice a month, which, if I could exercise and lose some weight, I think I could keep it under control.

However, now I have knee pain, pain from my ovarian cysts (which keep bursting) and shoulder/neck pain. The pain is getting worse for me. I finally asked for something.

I got ultram and mobix. I really like the ultram and even though it is not a narcotic, it may cause so withdrawl symptoms if stopped abruptly. I can take 3 a day, and if I am in pain for more than 2 days, I take 3 a day for about 3 days. Then I tapper back down to 1/2 in the am and 1/2 in pm.

This works for me. Good luck,
Shalome

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laceyj
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Pain is horrible,
I've read high doses of MSM can sometimes help pain
and i find infrared sauna helps pain if you do it consistently

also are you sleeping? cause if not,, that will exacerbate the pain

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laceyj
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i know this is nothing like pain meds and im not sure what kind of pain your having

but I think tumeric can help pain
and premier research has Inflammacidin for pain
and liver nano detox for pain

also accupuncture
but i did not find it helpful for myself unless I just dont have the right person

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richedie
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My doc has tried everything with me from various herbs, turmeric, fish oil, all sorts of things. Nothing works. My arm hurts to the bone.....just a throbbing mess. I use tons, and tons of Bio Freeze and it helps some. A lot if muscle pain. I can barely touch my arm and now it is bruising in the painful spots. My joints kill me. Climbing steps is difficult. I am 39 and in good shape, not 99! Heck, I was a personal trainer a few years ago and now I can barely make it up the steps.

--------------------
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
TO LIFE
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Dear Richedie,

I was given a DX of RSD 2 years after my tick bite. The pain I was in was off the charts. About 4 1/2 years after my tick bite I then showed a R/A postive.

I am no longer on pain meds. I've been in treatment now for 2 1/2 years.

Have you tried MSM???

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mmbl
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Richedie, I have not tried this myself YET, but a friend of mine was in a wheelchair almost all the time because the pain was too unbearable to walk. She SWEARS by acupuncture. She truly believes she wouldn't be walking today if she hadn't had tried it. Also, there are plenty of pain management offices, please check some out, you may find one that takes insurance. And remember to always talk to your doctor, even your family doc, they can help with pain and give you recommendations.

I, personally, have listened to the docs for years and took Motrin, Aleve, etc. NOTHING worked, I never even felt a slight difference. Tylenol helped with fever, but truly, I could care less if I have a fever. I just wanted to relieve my pain. I was prescribed Tramadol a few months ago. It is a small dose, and is one of the mildest pain killers on the market. I have to say, I was reluctant to take it. I too am, and always have been in good shape. I am not yet 30, and I can no longer get on the floor and play with my kids, and they are so young, it just breaks my heart that they don't understand. Also, going to the park, a carnival, heck even a grocery store elevated to being horribly dificult tasks, and I used to enjoy rigorous work-outs. When I no longer could enjoy any aspect of my day, and I couldn't bear to cut my up my kids' food, I decided to take the pills. It helped. It's the only thing that has. I was able to truck through the day and play with the kids and do a bunch of things I had been putting off for so long. It doesn't make it all go away, but I, for the first time, felt relief. I go through a few REALLY bad days a few times a month, and those are the days I resort to taking the pills. If I just can't do it, than I take them. I never feel great on the other days, but if I can make it through the day, than I don't take the pill. Also, doc says can take every 4 hours. I never take more than 2 pills a day, and that's on a horrible day. I don't want to have to rely on them. But at the same time, it's good to know I can rely on something on the days when I want to crawl in a hole and die. You know what I mean, the days when even laying in bed hurts.

It's a personal decision. I don't know you, but you have to know yourself. I know that I am responsible when it comes to this medication and I never used drugs or drank more than on a rare occasion. I don't consider myself to be in a high-risk category for addiction, though I know it can happen so I am aware and responsible. If you feel you can be the same way, then why suffer any more than you have to. No one should be in agonizing pain. But again, share all of your concerns with your doctor.

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mmbl
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@ Paulie: Very true, I notice the same thing.
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richedie
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hi, I tried accupuncture for a month with no results.

I will keep searching but nothing so far. I don't think my doc wants me on pain meds because of all the other things I take.

--------------------
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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Wimenin
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Talk to your LLMD about your condition.

You need to determine what is causign the pain. Are you in heavy herx mode, is it chronic inflammation, are your nerve cross wired/firing oddly, is there something else causing the pain, etc.

If you can determine the cause, you can seek out trx. Icing, massages, anti inflammatories, change in diet, ..all the way up to narcotics.

But instead of focusing in on the pain, try to determine the cause. Find the cause, treat the cause.

And most importantly, you must, must have a positive frame of mind when trx lyme. You may also have to retrain your brain to ignore certain pain signals so that over time, you no longer register a reaction to pain, twinges, tweaks, burning, shocks, etc.

Good luck!!

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richedie
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How do you determine the cause of the pain? My doctor says it must be from the infections. I lived my life pain free for years...now this!?

It has to be the disease. I want to cut off my left arm and my feet!

--------------------
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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SashaC
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I have been in treatment for 2 1/2 years and I am not getting any better either.
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WildCondor
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see below

[ 08-21-2009, 10:03 PM: Message edited by: WildCondor ]

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WildCondor
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richedie...

please post the doses of the meds you have taken and the length of time you took them. There is always something the docs have not tried. Things have to be the right doses and the right combinations to treat all forms of the Lyme and co-infections, and for long enough. Have you done IV? Bicllin shots?

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robi
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Diet and detox are extremely important. Have you done anything in those areas? My pain is much less when COMPLETELY cutting out sugar. I eat low suger fruit but aside from that nothing that has sugar (honey, cane juice, etc.etc) listed as an ingredient. I also rarely eat out. Sugar is in everything! It flares my pain greatly. Please consider cutting sugar out. I am not pain free but there is a huge difference. The difference in wondering "how long I can live like this" and finding some enjoyment in life.

robi

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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lymeparfait
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I would move onto a Natural Doctor who can help isolate the imbalances. And help you detox.

Detox is important with all you have been doing withthe protocols anyway. YOu will begin to move forward when you start here, with someone reputable in your area.

ASk for a good ND in your state and town in "Find a Dr."

I started with a ND, when my LLMD wanted me to progress with more drugs, and I felt already bad from the drugs, besides my illness. I just knew the treatment was making me sicker after time. I am now better by moving on to another natural protocol. Trust your instincts that it may be time for a change if you have no improvement.

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Sammi
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richedie are you sure the Babesiosis has been eradicated? When I have extreme muscle pain and difficulty walking up stairs it is from Babesiosis.

What doses of Mepron and Zithromax did you take? Did you take Artemisinin with it? How long ago did you stop treatment for it?

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2roads
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I agree with Sammi.

Perhaps take Art with the Mepron, or maybe it is not Microti and would serve better with Malarone in combo.....something is missing.

Posts: 2214 | From West Chester, PA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
   

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