Help, achesm & pain, Ibuprofen does not work even at high does

I was recently diagnosed with Lyme and am having hard time with controlling the aches and pains with medication. I have been herxing and have taken up to 1200mg because I could barely type. I read "In The New To Lyme thread" on here that when Ibuprofen does not work that I am having neurological problems with this disease. This is the first time I read this anywhere but it does make sense. What can work the help ease the aches and pains.
Also are Neurological problems harder to cure ,control. Is it possible that permanent damage is done even if anti biotics fully work?

I've always found hot baths to be very helpful, though sometimes they were hard to bear; sometimes because I was so cold, the temperature change was painful, sometimes because I was in such pain just the sensation of the water was too much. I have had a lot of neurological symptoms, but my body has repaired itself.

I used tramadol to good effect and have also Vicodin. I am fortunate to not have an addictive personality, so these were useful to me. Relaxation techniques and yoga were very useful too.

I hope you get some relief.

Thanks for the suggestions! I have some Vicodon and some Valium left over from a surgical procedure I had done a year ago. I tried the Vicodin and it did very little to relieve the aches but it did make me mellow out a bit. I have not tried the Valium as going to sleep has not been much of a problem. Lyme makes me so tired I can sleep quite well. A friend also told me Tramadol is good for pain. I will ask my doctor tomorrow if she can give me prescription to try it.
I am going to start my baths tonight with some salt designed to remove the toxins. Hopefully this will help me get over the herxing. What a crazy disease this is. I was diagnosed recently but was told it was old in the blood. So I'm in the middle to late stage of this. I have been trying to figure out for ages why I was fatigued. Doctors told me not eating well, vitamins etc were the cause. I honestly thought the aches until recently were just a getting old thing. So I guess their is still hope I can feel young again.

Mr. Blue -

1200 mg. of Ibuprofen is not safe! Please talk to your doctor and get something stronger to treat your pain. I'm sure people have conflicting views about taking narcotics for pain from Lyme disease (and I even had one LLMD tell me that they aren't effective, which isn't completely true). I don't know what I would have done if I hadn't had pain medication - even at high doses I had plenty of nights when I didn't think I was going to make it through the pain...when it's that bad, it really starts to challenge you mentally.

I still take 90 mg. of OxyContin every day, but I was up to 180 mg. a day before I started feeling a little better several months ago. I tried everything: Vicodin (at the beginning), then changed to something longer-acting (without the Acetominophen) and tried Methadone, Fentanyl, Morphine, combinations of pain medicines, Ativan, Valium, etc.. and nothing was as effective, and had the least number of side effects, as the OxyContin. Actually, most of them really didn't touch the pain whatsoever. You just have to see what works for you.

I know some people mentioned baths - when I'm in that much pain, I can hardly even make it to the bathroom, forget trying to get undressed and lie on a hard surface (bathtub)! The feeling is so bad that I would probably do ANYTHING to get relief.

I have some neurological symptoms, too, but nothing I've tried has helped (Neurontin, Lyrica, prescription NSAIDS, Ativan, and a couple of different kinds of transdermal patches). This pain from this disease is TERRIBLY difficult to control. I think neurological damage is possible, but I've also heard a lot of stories of people fully recovering.

I should also mention that I consulted with a few pain management centers, as well, and looked into more "natural" methods of pain control - they were all pretty much a joke in my case...but many people DO get relief from things like meditation, visualization, group therapy, and biofeedback...I didn't.

Please, please take caution with the high levels of Ibuprofen - it can really be dangerous!

Rachel

Hi Mr Blue!!
Welcome to our forum!!! I am so sorry that you have need of this forum, but we are sure glad you found us!! I'm certain that you will find us to be a kind, compassionate, & helpful bunch, as we really do understand what you are dealing with!! You will need to become your own health advocate, getting print outs of all the tests that are ordered, & asking LOTS of questions. Read as much as you can, so that you understand as much as possible about what is going on in your body.

I would also heavily suggest that you download Dr. Joseph Burrascano's "Advanced Topics on Lyme Disease" & get familiar with it. Even if you don't follow his protocol, there is so much info packed in there it'll be ore than worth your time - IMO. Just download the pdf file & then you can either print it out (that's what I have done) or whatever. Here's the link to it;

www.google.com/search?client=ubuntu&channel=fs&q=Joseph+Burrascanos+Advanced+Topics\&ie=utf-8&oe=utf-8#hl=en&expIds=17259,23756,24692,24878,24879,26714,26781,26799,26894&sugexp=ldymls&xhr=t&q=Joseph+Burrascanos+Advanced+Topics+in+Lyme+Disease&cp=50&pf=p&sclient=psy&aq=f&aqi=&aql=&oq=Joseph+Burrascanos+Advanced+Topics+in+Lyme+disease&gs_rfai=&pbx=1&fp=84f34ab5383c7ee9

For pain relief without drugs, acupuncture really works.

For the pain that I deal with that comes back in between my acu appts., I use Tramadol & Gabapentin (Neurotin). The Gabapentin actually helps the most by controlling the burning, buzzing, and severe achiness that I get. I have tried most narcotics (but not morphine- that one scares me!!), but have found that for the most part, they can't touch my pain.

I also use heating pads & ice packs with decent results. It all pretty much depends on what kind of pain I'm having that day as to what actually will 'make a dent'.

I enjoy my detox bathes (Epsom salts & peroxide), as that nice warm water always soothes my poor achy joints & muscles. You do need however to be really careful when taking a nice warm bath or what ever! Heat kills off more of those nasty little buggers, but being really dizzy can lead to injury should you fall - so please be careful!!

I do hope this helps some...
Trav

Hi again Mr. Blue!!
Hang in there - this is one of the toughest illnesses to get through, but it is not impossible!! I was infected at the age of 5 with RMSF & who knows what else as there was no real knowledge of tick-borne infections 40-some years ago in Northern Idaho where I was living at the time. I have had one year of abx about 3 yrs ago & it helped to get me through when LD invaded my brain. I have now chosen to treat naturally, by seeing an Acupuncture Doctor who is a Master Western & Chinese Herbologist & she also uses homeopathic remedies. With that being said, I am not against anyone who choses to go the abx route.

Herxing can be pretty tough to get through. By definition it is an increase of symptoms or having new symptoms show up because of the increased die-off of toxins. I do have some concern with you being on such a low dose of Doxy. Dr. Burrascano suggests that the dose should be as high as 600 mg daily as "Doxy is only effective at high blood levels".

Please remember that LD in Europe is generally of a different strain. Have you had any testing done to know which strain of LD you may have? It will be important to know. Also, I would suggest that you line up a LLMD here in the US before you come back to whatever state you call home. That way there won't be a long period where you will not be under any treatment.

Maybe you could explain a little more about your worst symptoms? What kind of pain are you experiencing?

I'm sure we all can help you get some things figured out so that you hopefully will not feel so bad.

Hey Trav,

I agree I have been very concerned about the dose of Doxy I am taking. At the same time if I take more won't I feel worse? At the moment of writing this I feel a little better then I did yesterday. With that being said my stomach is aching a little bit more now. So I'd be worried to take increase the Doxy right now. I have been taking a probiotic several hours later in the day. I'm entering my third week on Doxy now.

I'm 99.9 % sure I do not have the European strain of Lyme. I have not been in any wooded/forest area's where tic's are here but I have been in thes areas in the USA from 2008 and before many times. The lab also told my doctor the infection was old in my blood. I have also be'en complaining to doctors for years about fatigue since before moving abroad. So Im pretty set that its the American strain

The first blood test I had for Lyme was here in Berlin in May. This test showed small traces of it. The second test I did in the USA in August showed high levels of Lyme in my blood. Not sure what that is all about.

The worst symptoms I am having is Muscle/Skeletal aches and discomfort. Their are times where I feel like I'm walking on raw bones. All my joints are aching and I am cracking my neck and hands a lot. I feel severely arthritic at times. Then of course their is the fatigue which seems to be a bit heavier then usual.

During the first week of Doxy I had five days where I had more energy then I could recall in recent years. I also had no aches or pains. Then as symptoms flared up Ibuprofen and Hydrocodone were not working for me. I read on this site that if Ibuprofen does not help the pain then it is related to Neurological problems. To be honest I have no idea what stage I am in with this disease. I think I'm somewhere in the middle of it.

Any thoughts, analysis is greatly appreciated-

-Mr B

Hi Blue,
Just a few thoughts real quick, as my computer is down & I am "stealing" hubby's.
Please be sure you are protecting your stomach. Eat before taking your abx, This will not interfere with the absorption of the Doxy., although food does interfere with some abx.

As far as the testing differences that you mentioned - there is actually a rather long explanation that should go here, but I need to make this shorter so for now here is a part - What is being tested in your blood is antibodies. If your system is not recognizing that there is an invader, it won't start an attack. Lyme does not stay in the blood. As a matter of fact, it can become chronic in as little as two weeks. When LD goes chronic that is when it leaves the blood stream & invades the tissues & organs. LD also has three different forms that it is constantly rotating through - the spirochete, the cyst form, & the cell wall deficient form. If I'm remembering correctly, the only time that LD can be attacked with abx is when it is in the spirochete form.

This may sound like I'm discounting the amount of pain you are in - but believe me, I'm not. Have you tried aspirin? It is an anti-inflammatory as well as a pain killer. I use it from time to time still. If you have tried the aspirin and didn't get any relief, the meds that have helped me the most ( and several other Lymies) have been tramadol & gabapentin (Neurontin) for nerve pain (which can feel like bone pain sometimes).

As for the fatigue, make sure you have good sleep hygiene, and allow yourself enough time to sleep (I need anywhere from 8 to 10 hrs of sleep a day). Also, many LLMD require their patients to nap daily, so maybe you could fit in a short nap during your day??

A lot of the reason for your having had a good expeience the first week of abx is most likely because the abx started killing off the infection - like it's supposed to - but after only a week of being on the abx, your body went into a kind of toxin overload - a Herx. You should really be using more avenues of detoxing, like the detox baths & other ways discussed in the thread titled "New to Lyme?...Start here." It's the same way with what you said happened yesterday am. The reason you don't feel so good is because of a toxin overload - because the abx are doing exactly what they need to be doing.

I tried to follow the link that you posted in the above post & it just took me back to this thread, so I'll wait until you post that link again. There are so many different opinions on treatments!! I mainly refer to Dr. Joseph Burrascano's writings, but that in no way means that he is the only one who is right. Tick-born infections take advantage of the bodies weaknesses & since each of us has different weaknesses in our bodies, there is no 'one size fits all' treatments - hence all of the different styles & types of treatment.

I do hope this helps some....
Trav

Hi all

You can just call me ms. pain, however, I have maybe found a way to get some of me back.  For me its neuronotin or gabentinin generic form

of the former, excuse sp errors.  My mind is clearer my legs are better knees can still feel like knives are in them but I think(?) after the

neurontonin gets in it helps ( when knees are bad I fantasize about someone injecting me with a 12 inch needle of something for my knees

and I am scared to death of  needles.)  Anyway, I think I am finally onto something I am getting dressed, and doing more but I have a \

ways to go/.  The pa I see only gave me 400 mg 2 times a day I'm going for more.  I want 600 three times a day. I am a greedy withch

huh?  but this is my hope, my lifeline to speak of and then if needed a darvicot or vicodin for breakthrough pain but hopefully

if I can get this dose 600 times 3 there wont be much break through pain.  The crazy part is this  my mental clarity has improved so

much its amazing.  Evidently pain can make mental confusion, it's in its hypothesis stage at this point, but I find it

just a miracle.   I hope and pray  can get it and all of u are in my prayers too.  I like Phillipians too!! lisa

Thanks for the updated info Trav, Madgirl and Roses.

I finally got to see an LLMD here in Berlin today who specializes in treating middle to late Lyme. I was quite happy that this doctor took quite a lot of time to hear everything from my side but I am still not sure what to think about the visit.

I should mention that here in Germany people are well aware of Borreliose. Most people here do know about the disease. Their are 8,000-10000 new cases diagnosed a year here. This lead me to feel confused after my doctor visit because the doctor's approach on handling me Lyme is different then most of what I have heard and read thus far.

I explained to the doctor that I have been on Doxy for three weeks now and am feeling very bad still. I mentioned to him that I had some good days at the start of the treatment but in the last ten days it went downhill. He feels the Doxy is not working well for me and that I should go off it. He said I should not be Herxing at this point in the treatment. He said if the Doxy was working I would be feeling better at this stage. He recommend that I switch to Minocyclin. He said Mino is better for getting into the tissue cells. I have some ok hours on Doxy and some bad hours in the last two days. Today I had some moments of clarity followed by fatigue, This evening for example I was really feeling strong aches in my feet and feeling very fatigued. I could barely stand and walk. I have taken Detox baths a week straight now. The doctor had my blood taken at the office today and told me to come back on Thursday. He said he wants a clearer picture of what is going on with me with the Doxy treatment. He seemed adamant that Mino is the better treatment because as he said it reaches deeper into the cell tissue.

The last few days I have been taking Doxy two hours before I go to sleep on a meal. I stay awake an upright for the two hours. If I take it in the morning I feel bad all day and cannot get any work done. So I had tried the switch to cope. I was thinking that maybe tonight I skip the dose just to check if the bad feelings are the side effects of the Doxy. Is missing one dose an issue especially if I am about switch ABX? I have a lot of work to do tomorrow. I really cant feel so bad again tomorrow. I never had such hard aches before the treatment started.


I also told the doctor I was taking detox baths and staying away from Carbohydrate foods. He did not see the need for either and said normally I should be feeling better from the Doxy. I told him I was worried that I am having neurological problems. He said he would send me to a neurologist. My question to you guys is shouldn't an LLMD be able to tell on his own if I am having Neurological disorders from this disease?

This doctor seems to think that Mino will solve my problems. He thinks I am in the middle stage of this disease and that is very treatable.

This doctor came highly recommended from a Berlin based Borreliose website. A German friend of mine who is helping another Lyme-y from the USA find treatment
searched him out. The other person she knows who has late Lyme is looking for a particular drug here that they don't use in the USA. I am going to ask her what this drug is.

It seems all this doctor said to me is highly disputed by what I read online. I did like this doctor's persona though. He was very kind , took a lot of questions from me and did not rush me out of his office like other doctors so often do. He also made a quick appointment to see me again this week.

So I'm not sure what to do here. Should I stay on Doxy, should I switch to Mino. I don't want to throw away the last three weeks of feeling bad on Doxy. Maybe it is working and I'm just herxing out harder then most. Then on the flipside maybe it is not working and I am putting myself in further misery if I stay on this another three weeks.

I am really beatdown mentally on what to do here. I hope I can get a bunch of opinions here. It would make me feel a bit more settled on this doctor , his thought and ultimately my decision on what to do.

Post Edited (Mr Blue) : 10/5/2010 3:46:29 PM (GMT-6)

Thanks Rachel for some insight on what you have dealt with on ABX. I felt the same frustration today when I left the doctor's office as you felt reading what I wrote. I was expecting to be examined today as well. I thought I would of have had some sort of examination today whether it had been for joint swelling, neurological functions, cognitive functions. Do the LLMD's test for this stuff on first visit? I go back on Thursday for the blood results so perhaps he will up the pace then.

The hard part now is making the decision to quit Doxy on near completion of third week. The big question is am I herxing, having side effects or have the Lyme symptoms just picked up speed on their own. I am only on 200 mg a day. All three doctors I saw here in Berlin think this is the right amount to be on. I seem to read likewise on the internet.
I suppose since I am having some sort of bad reaction that taking more would not be to wise unless of course it is purely the Lyme symptoms i am feeling.


The frustrating part about researching this disease on internet forums is the people who cure themselves using ABX barely report back. It's really hard to gather information on which is the best route of ABX to go if you can't really here many positive experiences from people. I guess the last thing people want to do when feeling real good is to hang around in some forum with the rest of us Lyme-y's :( I have to remember to not be like the rest and post my results if I get better from ABX.

Did you ask the doctor why he didn't give you a full examination? Sadly, some doctors are so used to getting patients in and out in as quick a manner as possible, bill insurance, and being on their way with no questions asked. I think Lyme often pushes the patient to their limits, wherein they are forced to be their own advocates when there is a blatant lack of adequate care. We can't really continue to complain about the ignorance of the medical community as a whole if we aren't doing our fair share of educating doctors, one at a time...and demanding proper medical care. If the doctor doesn't measure up, move on to another who will.

Does it really matter whether you're Herxing, "having side effects," or the Lyme is getting worse? (In my opinion these are all basically the same and not only are they common after beginning antibiotics, but expected.) Is there one (or two) scenarios out of the three that would cause you to decide to stop taking the antibiotics? I know the pain can be absolutely UNBEARABLE and really make you feel like you CANNOT go on and like you aren't gonna make it, but you WILL. This is when it's most important to have a good support system, someone to listen to your whining over and over again and assure you it's going to be okay...and someone to pick you up when you fall (sometimes literally) and put you back on the couch or bed or whatever...! Lyme can really make your head spin with overwhelming thoughts. I would continue to take the antibiotics (either one) at the dose you were given (I've always increased the dose slowly to avoid worse Herx reactions) and go from there...ONE day at a time.

I know it would be great to hear from people who've recovered from Lyme, but the reality (again) is that different treatments work for different people; one treatment will not work for the majority...AND people relapse. You have to create/find the treatment that is going to work for you.

One more thing - the books I referenced DO have recovery stories in them and ALL discuss treatment options in great detail. They are really the answers to most all questions concerning Lyme.