posted
I have now entered a phase where I am in extreme agony.
Most of you know I was young, athletic, competitively skated, ballet, yoga before this hit.
I am at one year mark of tx: following probably only a year after bite and symptoms.
I am completely numb head to toe for 6 months- Well, it had gotten worse:
UnGodly, pain. I am not a baby. I have had knee surgeries, car accidents in my 20 and 30 and needed only 2 or 3 demerol tablets, etc post op or accident.
The right eye pain feels like someone is stabbing me with a butcher knife.
All of my joints feel like they have been crushed by a falling building- I needed ativan and took a darvocet this am. It is now 315 EST and I am just able to get out of bed. My MD called this morning to see how I am and she was very reluctant to give me a script for pain meds. ( She has been a saint and is lyme learning: I would not have survived until this point without her!!!) I wish I could convey to anyone how incapacitating the pain is when it hits.)
Any one else on chronic painmeds? Is this to be expected. Meanwhile, I am typing with blue ice on my face so I can sit up to communicate with everyone. Help......
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
I know what you mean, words can't describe the pain, I've had three babies with never a shot of painkiller and I'd have ten more rather than this pain. Does anything work?
Posts: 51 | From England | Registered: Oct 2005
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posted
iceskater, I'm so sorry to hear how awful you feel...esp w/the Olympics going on right now.
I know this may seem like a crazy suggestion, but for the past month my entire skeleton ached...every joint. I've never been so miserable in my entire life. But recently there was a suggestion on one of these threads about joint pain, and having nothing to lose, I tried it, and guess what? It worked! At least for me, and then for my brother, who has arthritis in his hands.
The miracle cure is organic apple cider vinegar. I know it sounds crazy, but what have you go to lose by trying it? At least that's what I thought, and I'm glad I did.
I'm taking 2 tsp mixed w/apprx 2tsp honey, then mixed w/ a little juice 2-3 times a day. I wouldn't expect to feel any results for at least 3 days, but if you're lucky, you will start to feel the effects before 3 days.
Obviously this won't help all the symptoms, like the numbness, but I have to tell you, I've only been doing it for a week and my hands almost feel normal, and my feet, which have hurt almost continuously, are starting to feel better as well.
I hope it works for you. If it does, maybe you won't have to take so many of those other pain meds. I'm a former pharmacist, and I have to tell you, anytime I can cure something naturally, I'd rather do that than take a drug.
I've had the stabbing pain in the eye as well, but haven't had this sx since starting abx, thank God. what abx are you on?
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
As a parent of a lymie, this has been the most difficult problem we have faced yet (though dealing with blood clotting disorder is closing in). She was at the point of not being able to sleep and would ask me to pound on her back to stop the pain and fluttering sensations. Her LLMD put her on oxycodone, assuring us that weaning off after cause of pain is gone, would be easier than dealing with pain now.
The problem: keeping the prescriptions flowing! Scripts can't be phoned in or refilled. This means picking them up between visits. No problem....except making sure the doctor has it ready on the due date!
We were told to call yesterday for the new one. Did so, but so far have gotten no response. My daughter will be expecting and NEEDING medication this morning and will not have it!
We were reluctant to go to this extent; but two LLMD's have approved it; both of them have lyme disease, as well as the experience of treating other patients with similar circumstances. If you can't trust them, WHO can you trust in this situation?
I feel like we are caught in a nightmare that never ends!
I think we are going to try neurofeedback next. There is someone in our area who has had success with treating fibromyalgia with this therapy. Has anyone tried this yet?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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As alone as you may feel with this agony of pain, you are not alone. Many of this do go through this same agony too.
I just went through the worse agony during the Xmas holiday and was practically pulling out my hair. Finally, after a number of calls, my doc prescribed me some pain pills. I take Pro Naps w/APAP 100 up to 4 times a day as needed, which is a generic for darvocet-n 100. You seem to be taking that already, eh?
Unfortunately, this med makes me feel pretty sleepy and I am almost too helpless to do anything; however, it does help me sleep better thru the night as there is hardly any position I can sleep without feeling like I am being crushed or something, especially in my shoulders which seems to be my biggest pain spots right now, as well as my hands.
Posts: 90 | From Maryland | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Ultram Plus two extra strength tylonol.
But sometimes the ultram is enough & don't like to take tylonol with it because of the inpact in the kidney/liver?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Guys: My docot gave me 20 Darvocet on my script: the last three days in bed with stabbing pain in my eyes so bad- I didn't move at all. I was able to sit up at dinner time and eat a little supper. Then back to bed : two ativan, two darvocet for 72 hours. Thank God, It stopped for noe. Keep sending the posts on pain.
Any ideals on the complete head to toe numbness, I have been experiencing 24/7 since Sept? Is this demylination or toxins?
Posts: 719 | From Delaware | Registered: Jan 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Moose, You said, "...there is hardly any position I can sleep without feeling like I am being crushed or something, especially in my shoulders..."
Do you use a memory foam mattress pad? I had a cheap one for a couple years, and recently upgraded to a better quality pad.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
iceskater,
The type of medication you need really depends on the type of pain. I recommend people find a really good pain specialist to help control the pain. Many pain speciailists may be iffy with the lyme diagnosis, but it may still be worth dealing with it just to get the real pain control.
My pain management system I use is:
Flexeril, which is a muscle relaxer. I take it every night. Without it, my muscles get extremely tense and I get referred pain all over the place. This may help you, because the pain behind your eyes sounds like it could be muscle pain. Flexeril does not work as well if you just take it when you need it. It really should be taken every day for chronic pain. It does make you tired, so I started at a very low does, 5mg, and increased weekly until I reached the maximum dose of 30 mg. Today, I take 10 mg.
Plaquenil reduces inflammation and related pain. It's an anti-malarial that helps people with lupus, RA.
I also take Vicodin as needed for other pain. It helps with everything but nerve pain. I used to use Ultracet, which was very good, but it can't be taken with Flexeril. (Another reason a pain specialist is good, they know how they all interact).
Also, you said you used to do yoga. I find yoga really helps reduce my pain, when I do it on a regular basis and don't push too hard. It's so important to keep the muscles moving.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank you, Liz. So much of that is "right on".
tj
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Pain has been a large part of my symptom picture most of my illness. There are a number of issues involved, and I think they all need to be addressed.
Liz is right that the infections need to be properly and aggressively treated. However, for some people, this kind of treatment will cause pain, precisely BECAUSE it is accurate and aggressive.
I am one of those people. For me, the more bacteria we killed, the more inflammation was created in my body. I also needed an aggressive neurotoxin elimination protocol to keep from causing more damage to my nervous system and immune function. For me, CSM and the rest of the Mold Warriors protocol has been essential. Other people may find other protocols work for them.
Until you figure out the correct antibiotic treatment, and the correct neurotoxin elimination treatment, I believe it is also necessary to have effective pain relief. Chronic pain suppresses the immune system, prevents sleep, and generally makes life miserable.
There are a wide variety of medications that can be used to treat pain. It depends on what kind of pain you have, how often, and how your body responds to the chemistry of meds. Trycyclic antidepressants, muscle relaxers, antiinflammatories, antiseizure medication, and narcotics are just some of the types of medications that may be effective in relieving pain.
If your doctor isn't knowledgeable in this area, and things are bad, you could try a pain center. Try to get a referral to one with a good reputation. It can make a huge difference to get things managed.
During the worst of my pain, I took high doses of Oxycontin ( a sustained release opiod) and Topamax, an antiseizure drug, for nonstop headaches. For breakthrough pain I took Vicodin as needed.
Once I started taking something to deal with the neurotoxins, my use of pain meds dropped dramatically. I am now taking extremely low doses of everything, and preparing to wean off.
I hope you can find something effective, both to relieve your pain, and to stop the progression of your illness. You need to approach this from all angles. I know this is difficult when you are ill, but it is the best advice I can give you.
posted
riversinger, I am glad to hear you do the Shoemaker CSM protocol. Have you done it non-stop? If not, what happened when you stopped it? My daughter got remarkably better on CSM last spring, but about 6 weeks after stopping, her symptoms returned. (She's still lyme and bart positive). She has been on homeopathic detox protocol but is not getting the results she did on CSM. She still tests negative on Shoemaker's VCS, but her pain is probably the worst it's been in 4 years. I'm very confused!
Also, has anyone tried neurofeedback for pain? I understand it works for central nervous system pain. We are trying that next. If we have any luck, I will post!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Lymeout,
I have been doing the CSM mostly on, some off, for 5-6 months now, while still treating infections. I also have Bartonella and Lyme. I have also treated the nasal Staph which is an important part of the protocol.
I do notice that symptoms come back when stopping CSM for any period of time, IF I am still taking abx. I also found that Actos was helpful when MMP-9 was high.
Is your daughter still treating the Lyme and Bartonella with Abx? Or is she only doing the homeopathic detox? The VCS test is not the only test used to see if you need to do the protocol. Have you read Mold Warriors? It has the best description of the protocol, even though it is focused on mold. It still tels what needs to happen for Lyme.
posted
She is now doing IV doxy and plaquenil. She was on ketek which really stirred up some neurological things - seizure-like tics and creepy flutters. She did the nasal abx and the actos. I just got Mold Warriors this week. I have been talking to some people in my area who have been through this protocol and have gone on to products from Isagenix, which they say are making a world of difference for them. Some of them could not tolerate the CSM.
I am going to try it myself. I don't have lyme, but she had to get the gene type from someone, most likely me. I have had chronic pain much of my life. If I feel a difference, I will probably have her try it. It is advertised as a diet product, based on the leptin theory; but it is much more, according to these people. And much more user-friendly than CSM!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I just have to chime in.......we have a nurse in our support group who tends to hospice patients....She had a bone cancer patient who had no relief from any drugs.
They finally compounded a gel w/ Ketoprofen in it..He applied topically.....She said this patient was AMAZED at the relief he got from the compounded Ketoprofen.
Maybe you can get your LLMD to prescribe at the nearest compounding pharmacy.
Nobody mentioned gabapentin either.....Here's a recent article that I received this week
Medscape article Morphine Plus Gabapentin May Be Better for Neuropathic Pain Than Each Drug Alone
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Skater,
I am so sorry to hear you're in this kind of pain. I've followed all your posts and just hope you are able to get some relief soon.
I just went to my LLMD for appointment on Thursday. I'd made a list of all my ongoing symptoms:
brain fog a LOT of numbness burning stabbing pain, usually worse at night eyes on fire some twitching cognitive problems
She looked at the list, asked me a half dozen questions then prescribed a second antibiotic for Bartonella (Rifampin), in combination with the Ceftin I already take.
Like Liz suggested, she was convinced I am left with a second tick infection, despite the tests showing negative.
Last night was pretty hellish -- all the above symptoms exacerbated 10-fold with a lot of nausea thrown in. But today, I felt...more hopeful.
I also read the post psano talked about, re cider vingar and started that regimen. Too soon to tell, but I'm also hopeful about that.
As far as pain, I take tramadol with acetomenaphin. I'm not ure how much relief it gives me and usually don't take it unless the pain is almost unbearable.
Oh, the other thing I wanted to suggest is acupuncture. My sessions have helped unimaginably. In addition, she's giving me Chinese herbs which I think are also making a difference.
Again, I hope you find some relief. I've followed your posts, because Rehoboth is where I often head each September (this past year, I was down in Oct for jazz weekend).
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Liz, I'm going to break up your longer paragraphs below to shorter ones of 6-8 lines of text only so I/iceskater can read/comprehend better.
Looks like you have a lot of GOOD, informative info that I don't want to miss reading/printing IF it applies to me too. Thanks for taking the extra time to share your wonderful, 1st-hand experiences with iceskater/all on this board! They were great.
quote:Originally posted by liz28: Okay, what you are about to read is an extremely biased, one-sided, limited-experience opinion:
I don't buy that you are on the right antibiotics if you are still in this much pain after one year.
If this turns out to be the wrong take on your situation, okay. Please just take this as one non-doctor's opinion.
I was disabled for four years before going on better antibiotics. While not a true athlete before getting sick, I ran 4 miles a day for years, practiced hardcore yoga almost every day, and lifted free weights.
The first two Lyme years, I lay in bed with a fever, barely able to walk out the front door. The third year.
I went on an old, now-obsolete version of the Dr. B protocol, and managed to go back to grad school part-time.
At four years, I found out I actually had two co-infections along with Lyme, somehow changed doctors without committing murder, and went into remission for two out of three bugs in six months.
Here's an abridged version: cephalosporin + macrolide + cyst buster for Lyme, "overwhelming force" for co-infections.
Next, no matter how much this hurts, sit down and ask yourself the following:
How much money am I spending every month on medical treatments?
Have I ever been told that women with chronic Lyme have emotional reasons for not getting well, so if I question my current medical treatment, there's something wrong with me?
Has any medical professional ever told me that he is my only hope?
If I read about some of these new antibiotics and then ask my doctor about them, has he ever even heard of them?
Will he or she be willing to try them, even on a low-dose, cautious basis?
I am not, under any circumstances, saying you should be paranoid.
What I am saying is that the Lyme world is very different from the mainstream world. You get the best Lyme results from:
being 100% educated about every available treatment,
asking for what you want,
being assertive instead of waiting for your doctor to magically cure you (even the most heroic, honest, brilliant ones see about 2 million patients per day),
and moving on quickly if your doctor is not comfortable with a treatment that might work for you.
I just spent the past month trying to find the right COSMETICS, a far more frivolous pursuit than Lyme, and it still took four makeovers, a thousand hours of online research, and experimenting with five different brands before I found the best match.
Every worthwhile pursuit takes time, effort, and fine-tuning.
Remember, in the mainstream medical world, the primary incentive is competition.
If there are 100 flu specialists in practice on this square block, how can I stand out by being the best of them all, and be rewarded with tenure at Harvard.
In the Lyme world, the incentives are money and reputation.
If I can help these disabled and dying patients, not only will I save them from a horrific disease and live up to the finest ideals of medicine, but I can charge $800 a month to someone who will be willing to see me for the next ten years.
If any of this rings true, here's a possible next step:
go through Lymenet and memorize the treatments people have used over the past three years.
Yes, it's totally annoying to read a million posts, but if you do it, you'll notice that the antibiotic treatments have changed enormously over the past year.
In other words, the drugs that were top-of-the-line just two years ago are now your second-best choice.
You'll see certain "hopeless cases" abruptly get better and disappear from the board, and you should be able to find out what they did.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Treat co-infections Use FIR Sauna Address heavy metals Read Dr. K's protocol and implement what you feel appropriate in your case
You can recover. I am doing very well after 9 years of being ill and only being diagnosed in July 2005.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
My hubby has esophageal cancer and had a total esophagectomy on Jan 9. I spent three weeks in the city with him tending to him, overseeing his care, etc. He came home two weeks ago.
I crashed big time when we made it home. I haven't felt this bad in years with my lyme and babesia. Total exhaustion and lots of bone and muscle pain.
I'm using vicodin, sleeping on a memory foam mattress, applying arnica gel to my shoulders and neck, and using the hot tub when I'm up long enough.
The pain is worse at night when I want to sleep like a regular person. I also have taken flexeril at night to keep my muscles from spasming so badly.
Seeing a gifted chiropractor twice a week as well.
I think I'm ready to add in massage this week.
In any case, this pain is my definition of misery. I'm ready to do whatever will shift me back toward where I was before my husband's surgery. Stress and lack of sleep are our enemies big time! Sleeping in hospital chairs is simply insanity, but I did it anyway.
Now we're both patients together. Quite a pair of misfits, but his cancer is listed as NED now...No Evidence of Disease...This makes every bit of it tolerable.
Be gentle with yourself!
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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posted
I have been on CSM , multiple abts, and trying many things,
I keep trying getting foot pads, etc.
We have treated co's everything- guess that we just haven't found the right combos.
Very plagued by my liver function ; so I have to change, stop, etc. body has been fragile. LFT are down in a normal range. Dr is going to start blood work 2 times weekly.
Thanks for all of your posts.
Two days without eye pain, and upright: I just don't know what to do with myself.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Iceskater, Do you still do CSM? If not, are you doing any liver cleansing? I don't know how CSM works, whether it detoxes all organs. Does anyone know? We have used German homeopathic products that have worked amazingly well for severe digestive issues. There are products for draining specific organs, including liver. Having said all that, she is still in great pain; BUT her digestive issues are resolved and her liver tests are good.
Solving the lyme puzzle...one piece at a time!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I used elavil for years for constant burning ache and arthritis. Increases norepinephrine and or serotonin by blocking reuptake by neurons. It is inexpensive. And I didn't have to use narcotics. It is antidepressant and is also useful for chronic pain. Most docs more than willing to prescribe.
Posts: 290 | From ohio | Registered: Dec 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i know all my pain is caused by inflammation because oxycontin doesn't touch it but ibuprofen and ketorolac do. there are times i need 2400mg ibu a day (years ago it was 3200mg). also cosamine ds for the pain that is in my joints that are now destroyed(zero cartilage) and sometimes skelaxin or flexeril. i have taken tylanol on top of everything-but usually get into some kind of trouble when i do that.
also 20-40mg of atarax a night gets me into good sleep and i know that helps with pain the next day.
demorol pills don't do anything-but if i happen to be in the hospital the shots take the edge off.
ps-if you are going to do the ibu-be sure to protect your stomach
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Hi. This is my first post. I am the mother of a 17 year old daughter who was recently diagnosed with Bartonella and mycoplasma pneumonia. It's been a two year journey to get to this point and she just began the antibiotic therapy, which lead to the herx.
I just wanted to comment on the epsom soaks. Our AP doc has noticed over the past 10 years of treatment that people got worse with large amounts of magnesium. Epsom salt is 100% magnesium and soaks into the skin very quickly. The Bartonella bacteria use it as a shield. This makes it difficult for the antibiotic to penetrate.
My daughter was doing a daily epsom soak for the first couple of months on AP. She was very swollen and in a lot of pain. Stopping the epsom and just taking hot baths and spending time in a dry sauna is helping to rid her body of the magnesium. I know magnesium is good for some things, but this may be a consideration.
My daughter is in a lot of pain, especially her eyes and hands. But, of course, it floats around to joints and brain. With the cognitive difficulties, she is having a dickens of a time trying to pass her one last class to graduate...geometry. She has homeschooled 3 of her 4 years of high school due to illness. Not our plan, but what can you do?
This disease sucks. Thank you for all your experience. I just scratched the surface of the board and will not post again until I have read enough to feel worthy to contribute. But, I just had to add that piece of information.
Kelly in AZ
Posts: 2903 | From AZ | Registered: Feb 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Kelly in AZ: Welcome to LymeNet!
You said, "I just scratched the surface of the board and will not post again until I have read enough to feel worthy to contribute."
Oh, please don't just lurk -- feel free to jump in!
I have not used Epsom salt soaks, but others who have, commented that they sometimes felt worse afterwards.
This may have been due to a Jarische Herxheimer reaction.
Carol
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey iceskater be real careful with the plaquinil as it can damage your retina. It can also cause blurry vision. I have been on it & it does make my vision blurry
As far as pain I can only repeat that 2 ultrams every 6 hours does very well for pain. I think the above posts where very good ideas.
The flexeral at night. This will also help you sleep and any aniti-nflammatory. EXCEPT steroids.
I took it post surgical back surgury. It's not a narcotic pain meds. But I think you may be surprised at how well it works.
Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Iceskater
I re-read your psot and noticed that you love your MD and she is a saint and "Lyme learning" but if you are tankin I would try to find or go to the best LLD you can find with the most experience.
He may have better idea's for abx & meds combo that would work. Someone with more experience to stop the progresion of the lyme, the root cause.
You could still probaly keep your MD for local visits and monerating. That's what I have done. Driven out of state for the last 3 years . It has been worth it as has so far saved my life.
No Pressure ,just an idea. LOL dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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