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Posted 11/12/2009 10:06 AM (GMT 0)
It is now 2:36 AM and I cannot sleep.  I am in an unexpected relapse and quickly sliding into despair.  I have fought so hard and had so much hope that I was recovering and would soon be well.  But now it is coming over me again.  I started my old prescription for Rifampin at half dose (300mg) and am tolerating it, which is a blessing.   I added Zithromax at 500 mg.  I wonder if I need to address the rest of the lyme part.  Zithro attacks the intracellular.  Do I need to take doxy again and pulse flagyl?  I will just take it slowly and see what happens.  I have to treat myself right now as I can't afford another 1000 mile trip to see the LLMD. 

My mental state becomes such a blur that I have to read instructions over and over but still can't remember.

I have physical complaints but nothing unbearable.  Worst of all is my emotional state which is very down.  I realize this is both lyme and bartonella.  I shouldn't complain because I am not as sick as many of you but I fear I will be.  I am sorry for bringing anyone else down.   It is an emotional herx. 

 The Oprah show today did not help matters any.  That poor woman's life was completely destroyed by what the chimp did to her.  The chimp was being treated for lyme and to me, that is the face of lyme (and bartonella).  So terrifying because it is beyond aches and pains and fatigue and depression.  It is horrifying mental deterioration and insanity. 

Again I apologise.

Posted 11/12/2009 10:53 AM (GMT 0)
Hello nefferdun! I too cannot sleep. I dont feel qualified to advise on meds. Just started myself on doxy and vicodin. Everyone here talks about detoxing and probiotics. maybe ill start that also. Dont apologize! No need. If you were not still up Id have no one to talk to! Maybe one of our LLMPs can advise on meds(lyme literate medical patient) Doctors arent much help. 1000 mile to see a LLMP? That is just crazy! Where do you live.? Not that Ive found a LLMD that will see me. Did find a vet. Go ahead and laugh, its funny! Suddenly decided my puppy needed shots and made an apt. Plan is to corner the poor unsuspecting soul in his office and not let him out until I get the information so desperatly needed. Best part is I dont have to travel 1000 miles. Call it sleep deprivation.
SLEEPLESS IN GAINESVILLE
Posted 11/12/2009 12:49 PM (GMT 0)
mother natures child

Everyone that I know and know of whom have MRSA has been put on IV meds...

Did the doctor say anything about maybe putting you on this type of med??

Very odd to me that the doctor is not treating the infection with a more aggressive approach.
Posted 11/12/2009 12:58 PM (GMT 0)
OOPS!! Sorry I responded on the wrong thread
Posted 11/12/2009 2:07 PM (GMT 0)
Well done for writing out your feelings. I know exactly where you are (emotionally, not where you live!). I was there a few weeks ago. My LLMD suggest Sam-E a supplement available at any health food store. Please check with you doctor to see if it goes with your rifampin.

Keep looking for ways to make yourself feel better (medicines,herbs, treats, spending time with people and other animals that you love. Do what it takes to get some sleep, that is so much the key to healing.

And know that you are not alone. We are going through this together.
Posted 11/12/2009 3:18 PM (GMT 0)
Neffer, I am so very sorry about the place you are in now. I have been there recently and may end up there again, because right now I have no Dr and no treatment. I do not know the answer, excep that you have to hold on and believe that this is temporary.

If you have insurance, then I believe you should call your rep and beg for help. A lot of this pressure needs to be put on them. It may be for naught, but we have got to let them know the state we are in and what we are fighting, despite what the 'medical community' believes. We deserved MDs who can help us!

The mental part of this disease is so devastating. If you are able to treat yourself (if you have the meds), then I think you should do it. If this is an emotional herx and not a freshening of the disease and symptoms, then that means you are making progress, doesn't it? I went totally bonkers before feeling relief. You've got to know this.

Just take it as easy as you can, dont' overdo on the abx, but do what you feel is right. All that the Drs know is based on trial and error, but on more different people. If you have responded to the treatments that you have in the past, then try them again.

Stay on here, keep reaching out, keep knowing it is temporary. Just tread as easily and gently as possible.

btw, to all you Lymies: It is not just us. My daughter has a medical issue. She has been tossed around from the ER to the Dr, paying co-pay after co-pay. All the Dr has done is take xrays and run the regular blood counts. The Dr will not call her when he says he will. He will not return her calls. She is scared and has no idea what could be wrong, yet no one will help her or follow up w/ her. The nurses are snotty and will not help. No one in that office even cares. There's nothing left for her to do but look for another Dr and start over.

So it is not just Lyme. It is a big chunk of the Drs out there, who don't know anything, don't care, and simply milk the system.

Neffer, you are in formost in our prayers right now. Please know that. You WILL experience some relief at times, you WILL. Hold onto these times! Again, you are not alone. We are all pulling for you!
Posted 11/12/2009 4:42 PM (GMT 0)
Thanks you guys. Treating bartonella with abx gives me insomnia and makes my nerves raw. I have been getting symptoms back over the last three months and thought it was just herxing from herbs. I let it go too long because I was afraid to take the abx again as I had such a bad reaction last time. Now I wake up in the middle of the night with hot flashes, headaches and stabbing pain in my knee. It all just sneaks up on me until I am lost in it again. My memory is horrible and I can actually forget why I am feeling so miserable. It just seems normal to not want to do anything at all. But it is the emotional part that changes who I am, making my outlook on life very bleak - why bother. All of this worsens on abx. I just tell myself it is the drug and it is doing it's job. Last time when I was taking levaquin I felt this way, only worse. Within a few weeks I was seeing the light again. I joined an exercise class I was feeling so good, which is not a good thing with levaquin, and got tendonitis. So it is a roller coaster. Levaquin did kill alot of bartonella though.

I live in Montana and doctors do not believe there is lyme disease here although the state epidemiologist confirms it. I don't know anyone else that has it. The only doctor I have seen here was instructed by me on how to treat it. I took him Burrascano's treatment protocol with important parts underlined. He never bothered to read the whole thing. Then he read the CDC version and suddenly I was cured and having unrelated problems. So there is no support for me except the net. The LLMD I saw was in Seattle, over 500 miles each way plus hotel etc. I really didn't think he gave a hoot, I am sorry to say. He did not even give me a physical exam so the trip was completely unnecessary and just covered him so he could give me the standard abx he used, which is no different than what I read online. He required 600 dollars in tests which he never even looked at because the hospital did not send them to him and he never asked what happened. Every time I had a problem with the drugs he gave me, he charged me for the call. I was actually making better decisions for myself as he advised me to continue the levaquin until it caused major damage. When he gave me a new prescription he told me to start it up full dosage each time and each time I was overwhelmed. It was online, here, that I learned to progress slowly, All of this is depressing me too. There is no one to turn to. No one that cares.
I am also depressed and angry at how people sell books and herbs promising a cure which does not work. It is preying on all of us and it is wrong.

Insurance does not cover anything as it is astronomical - a 10K deductable. The herbs I was using were costing me 500 plus a month and here I am right back where I started.
So I am drug from anger to depression and despair and back to anger.
Posted 11/12/2009 6:05 PM (GMT 0)
Nef,

Thank you for exprssing the frustration many of us feel. I do not think your post would bring anybody down; I suspect most of us house the same or similar feelings. For me, it's reassuring to know someone else also feels that way and that I am not alone in my internal dis-ease. Lyme is very difficult to live with because, as you have pointed out, it's controversial and there's no agreed-upon treatment protocol. That leaves us all open to to being exploited. And we feel so awful we're desperate for relief, which maybe makes us less discerning and cautious than we would be ordinarily. I'm new to this and trying to weed my way through the confusing and often conflicting recommendations. This process isn't helped any by the frightening emotional changes I am experiencing. I keep telling myself it isn't real, but it feels very real and often I do not know what to do about it. I've begun giving myself time to evaluate my response to things before I express an opinion, because I can't trust that my initial judgment is reasonable or a true reflection of how I actually feel. This delayed response leaves me concerned that people will think I am impaired, or that I'm hiding something. Often, by the time I'm ready to say anything, the conversation has moved on and the opportunity is lost. Then, I suppose, I just appear dull. You are so right that the challenges of Lyme go far beyond the physical pain and symptoms. The emotional and mental involvement are devestating. The buoy I cling to is the conviction that this is temporary.

I know almost nothing about the medications or treatments, or about the medical field in general. Probably you've already thought of this. Is it possible for you to find a good LLMD out of your area who, after the intial visit, would treat you over the phone with maybe just a few visits a year to their office?

Take care,

Rose
Posted 11/12/2009 8:05 PM (GMT 0)
Neff,

I wish I had a magic wand to make us all better. It hurts my heart to see others suffer so bad. It's truly sad. I don't have any answers except to take it slow. You don't want to overload your liver with toxins. That could also cause emotional problems.

Keep your head up and keep posting. We are here for you!

Oh, and try to detox. It will help.
Posted 11/12/2009 11:42 PM (GMT 0)
Thanks for being there and understanding how I feel.
Willowrose I laughed when you said you were slow to respond with your thoughts and feelings because you were not sure it was what you really meant or felt. My sentiments precisely! But I am very dull, not just appearing that way. I worry that I am getting dementia.
CajunGrl, I know you have been upset with similar feelings of anger towards the doctors that misdiagnosed you for years. I saw six myself. I am going to go slow with the meds as it is giving me insomnia. I just found out there is a homeopathic LLMD near Spokane, which is much closer than Seattle. But I am not sure I believe homeopathy can cure this.
Posted 11/12/2009 11:54 PM (GMT 0)
Yeah, well, appearing dull and actually being dull could be synonomous in my case too. Maybe I'm too dull to know the difference!



Rose
Posted 11/13/2009 3:32 AM (GMT 0)
my dear girl
I felt like you do a lot when i was active sick. I know you are treating yourself don't take too much antibiotic, If you don't mind I will say a prayer for you, hang in I am living proof it will get better but be careful with those med!!! I like vitamin C lisa
Posted 11/14/2009 4:12 PM (GMT 0)
Nefferdun and Willowrose -- I was glad to read your posts (tho sad that this happens for you), about how slowly you are often able to respond.  This is a HUGE problem for me. I work w/ some real 'B's who are often very nasty and insulting. Because I have chosen to not become the people they have become, I refuse to return the insults and remain quiet. However, ALWAYS, after I get home, I think of responses that would have been brilliant! Well Dang. It.  And yeah, part of it is just being dull.

Again, agreed, Neffer, the mental and emotional is the very worst. I have said it on here before, over and over. Negativity, irritibility and depression are such big parts of this disease thta it becomes difficult to impossible to help oneself.  When the blackness takes over, there is nothing to bring you out of it except some time. (at least mine would come and go). When it comes, I feel total despair, hopelessless, self hatred, and find no meaning to life. It is horrible.  It is impossible to grasp any positive thoughts or feelings.

Lyme has changed my personality and who I am, and I resent the hell out of that!

Neffer, I don't have the insomnia because I drug myself every nite -- I have to knock myself out. I know that is bad, but the only reason I'm not suffering insomnia, which, for me, when drug free, has been chronic and at times debilitating  since 1972.  Insomnia is the next worst, next to the mental and emotional -- plus it only makes all the other symptoms worse.

I dont' know how to help you there, except to agree that is unbearable.  I had it so bad at one point I was suicidal.  Not being able to sleep is a holy NIGHTMARE and it is painful.  Is there no Dr there that can at least help you w/ the insomnia?  Don't tell them about the lyme or any self medicating. If a Dr can help you w/ the insomnia -- maybe w/ an antidepressant, maybe you could find a little relief for this one symptom. I know that is scary too, so you'd need to find a real Dr who cares and who will look out for you.

I believe that if you cannot sleep, your body can't recover from anything. Sleep is one of the times that your body uses to heal itself.

Again, all that I have been able to tell you is that we understand, we sympathize, and we are praying and pulling for you.  We are all still looking for answers.  I, too, believe we are being exploited. I am not certain yet that there is a cure.  Or most likely, just as w/ cancer and many other diseases, some can be cured and some never are.

 

At this time, I am my own experiment. After some very bad herxing, I have run out of Amox and felt some relief now for almost 2 weeks. For a few days, I believed I might be cured, tho I still have too much fatigue and back/neck pain.  (Maybe those will never improve?)

If the worst parts come back w/ a vengeance, then I will be one more piece of proof.  (Meantime, I remain on a reputable LLMD's waiting list)

Lastly, Nefferdun, I do not know enough about levaquin, except I know I don't like it. If a REALLY good Dr prescribed it, I might take it.  If it helped you so much, maybe you should try it again, but leave out the exercise program, or maybe just do some stretching or yoga or some easy walking.  Or do the same w/ whatever other abx you choose to take.  It is more important to cure your lyme/bart than to get yourself in shape, right now, even if you feel like it.

I, too am wondering about pulsing.  could it possibly work to take an abx until one feels better and then stop. That could be improvement or it could be the lyme going into cells or hiding or Ls or whatever else it can do.  And then, when it first sticks it's nasty little head out, WHAM IT again.  And do this over and over. I wonder if that would be better than just staying on the abx constantly?

Posted 11/14/2009 5:26 PM (GMT 0)
+Lyme,

Reading your post left me feeling both sad and reassured. I was sad because you and so many of us are going through this, and we don't know what is the way out, or even, for us, if there is a way out. I was reassured because having all of these physical and mental health problems is frightening; knowing it's part of Lyme and coinfections that other people struggle with too puts it in perspective. Still, understanding it, for me, does't much mitigate the challenges that come from having this disease. Some days managing myself feels like a full-time job. It's almost as if there are two of me, the one that wants to panic and keeps doubting, and the one that constantly has to come behind and say every positive thing I know about this. A lot of those things come from what I have read on here and I am grateful for that.

It's bad enough waging our personal battles with Lyme without having other people create additional issues for us. I wish they could understand what we are going through. I do not think the people with whom you work would be so inconsiderate if they did. The hardest people I've had to deal with are the ones who have been ridiculously healthy all their lives and have decided that anyone who isn't like that is a hypochondriac, or is looking for attention, or is intrinsically weak and should therefore be culled from the herd. I don't know whether to feel sorry for them because they are so shallow and limited in their perspective, or to despise them because they're mean and thoughtless. Ultimately, I've decided, their opinions don't matter, so when I can, I avoid them, and when I can't, I ignore them. It helps a little.

Sleep deprived and hurting...but still full of hope,

Rose
Posted 11/22/2009 12:49 AM (GMT 0)
Nefferdun,

It has been a while since you posted this topic. How are you doing?

I have a lot in common with you, with the exception of dispair. I self treated with Rif and Azith before I found a doc. Even after seeing the doc I was on the same RX - so I think you are doing something right (even if you don't feel so good).

I do have concern for those mentioning to not take too much abx. I can see a considerable difference on the bad days when I kick my 600 mg rif up to 900 (which I don't often do) but I have felt it necesary and do not regret having done so.

You can successfully treat yourself, as there is no documented cure in the medical field other than the lies we are told that 2 wks or 30 days of Doxy is all we need.

Doxy helped me in the begining with my throbbing spine, but no matter how much I took it didn't seem to cure anything.

One of the greatest part of my treatment when I was really bad off, like you are, was my addition of Fluconazole or Diflucan. 200 mg per day or a starter of 400 mg. It works very well with Rif and Azith, however I take the Rif a few hours before the antifungal so that the antifungal doesn't compromise the Rif.

I took Diflucan for a while and do not regret that, as the doc also gave me rx for it, along with my abx. Others treating have also remarked how good it is.

Personally, I find that Potassium Iodide or KI (mostly idoide very little potassium) really showed to be a plus.

If you want info on the KI let me know. I don't want to give you too much in here, as I know what it is like to read and not absorb what you have read. Then you go back and re-read and re-read because you lost confidence that you even understood it when you think you have.

Yes, this can be a very deceitful disease, causing you to question yourself and even doubt your recovery.

I say, quit questioning your treatment, keep up the good work and have the confidence you used to have that you will beat this.

The great thing about you kicking this, is that you could say you did it yourself! How excellent would that be?

Best wishes!

Here are some places to get abx:
4RX.com
Drugs-pro.com/
Goldpharma.com
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