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Can't keep living like this....

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Posted 9/17/2011 2:49 AM (GMT 0)
I'm at my breaking point. I've been on oral antibiotic treatment for Lyme for somewhere around 6 months now (this is the 2nd time I'm treating it because 7 years ago I was diagnosed, treated, and then told it wasn't Lyme after all) and at first I was able to handle it. I was herxing, I guess, almost nonstop....finally I started to have random bouts of relief and I actually felt like I was finally getting better. All of a sudden I feel like I'm completely spiralling.

My blood pressure gets lower and lower every time I go to the doctor (it's now at 80/60 and just a year ago it was PERFECT), I'm so faint all the time I can no longer drive, and my doctor doesn't seem concerned. I leave the house to go to the doctor and once in a while grocery shopping and THAT'S IT! My heart's constantly pounding and my entire left side goes numb EVERY SINGLE DAY sometimes for hours at a time...I just don't know what to do anymore. I'm afraid something besides Lyme is really wrong (because boy does something feel REALLY WRONG) but I don't know what I can do...I've gone to the ER for things like this before and they've REFUSED to do anything more than an EKG, a drug test, and send me on my way swearing all that's wrong is ANXIETY. Yes, I have anxiety. Yes, I've had many a panic attack IN RESPONSE to these terrifying symptoms. But among maybe 10 doctors, NONE have actually looked into ANY of the symptoms I'm having. My arm goes numb EVERY DAY and no one's checked it out. I get pins and needles EVERY TIME I eat, and my doctor responded to that with "oh so you're having abdominal pain" ...I'm SCARED, but the only doctor who believes tehre's anything wrong with me besides anxiety is my LLMD who I only get to see once a month and who is starting to write off my severe symptoms as well.

Sorry for teh rant I just don't know what to do anymore but I cannot live like this day after day after day after day............I stay hydrated I eat healthy I do detox baths and drink detox tea and sleep enough but not too much rest but not too much...I don't know what I'm doing wrong.

Posted 9/17/2011 10:13 AM (GMT 0)
You know, I have met several people who have had both Lyme disease and cancer. They all say they would rather go through cancer than have Lyme again. Even if the cancer was fatal. Pretty telling.

We don't get or give ourselves enough credit for the awful thing we are battling here. It is absolute Hades (can't use the other word). How else would you define it? You are in a situation that you simply cannot bear and there is no end in sight. That's eternal torture, isn't it?

But it is temporary. There is a stage in climbing a mountain when you are walking through the trees; you can't see where you have come from, nor can you even see the mountain! It seems to go on forever. Then one day you get above the tree line and you can suddenly see how far you have come and there is a clear view of where you are going.

Need a movie analogy? Dorothy when she gets out of the woods and can see the emerald palace! Go on sing it! You're out of the dark ....

Anyway, what you are going through is temporary and you will, as they say, turn the corner. It is just hard to see right now. Hold on for dear life, focus on what you are living for (your own personal mountain peak or Emerald Palace).

You can do this.
Posted 9/17/2011 2:07 PM (GMT 0)
So sorry to hear what you are going through. Hang in there. I really thought I would never get better and here I am feeling great. I have been in treatment for over 2 1/2 years. Are you seeing an LLMD? Are you watching your diet? Taking supplements? These are all things that have made a big difference to me. I cut out caffeine and chocolate all together as it was makaing my heart race. I take magnesium to help calm me and help me sleep as well as a large number of other supplements. Perhaps we can help you get over the hump here. What antibiotics are you on? This forum was truly a lifesaver for me. I don't know how I would have gotten thru without it so maybe we can be of some assistance to you. Lyme will take all the strength you can muster up but it will make you stronger and has made me a better person overall. I hope today is a good day for you.
Posted 9/17/2011 4:19 PM (GMT 0)
HI Borderlyme,
I am so sorry that you are having such issues! Having been house bound - and even bed bound - from this disease myself, I can sympathize with you greatly. Have you spoken with your doc about his lack of concern? It would be better for you to see if there isn't some thing that could be done rather than switching LLMD's, but that's always a possibility as well.

Although the low blood pressure and neuro symptoms that you mentioned could shake up anyone, they are still "normal" in the realm of Lyme and Babesia. You can read more about others experiences by using our search function and entering the terms "Low blood pressure, Lyme" and "Low blood pressure, Babesia".

You may not be doing anything wrong, it may just be a form of a herx. Are you on really high dosages of abx? Maybe if you listed what abx you are currently taking others can relate their experiences while on them as well?

Please understand that the first time around it sounds like you were left with an active infection, so it has had the opportunity to get a pretty good foothold in your body now. It will resist and hide the best it can, and Lyme is pretty good at that!! With co-infections it makes getting rid of the Lyme even harder.

Hang in there, as the others have said, it can be a pretty tough road to walk sometimes, I know it gets that way for me too.
Posted 9/17/2011 4:38 PM (GMT 0)
Hi Borderlyme,

My heart breaks for you. People love to tell you that your symptoms are because you are anxious but I think everyone here can agree that you are anxious BECAUSE of your symptoms. I wish I had words of wisdom to offer but I just started this journey myself. I've yet to even be diagnosed but I know my body.

These men and women in this forum are so helpful. They have an amazing amount of knowledge and if they believe you will turn the corner, so do I! You've come this far, right? I know it's scary. I know you are sad. Just keep thinking about what it will feel like to finally whoop this thing. Picture that day. Hold it clear in your mind. That is what you are working toward.

You are not alone.
Posted 9/17/2011 6:19 PM (GMT 0)
The only things I can offer here are empathy, and to suggest that you ask your LLMD about the heart stuff (although mine insisted I stay with my cariologist).  I had been treated for the heart symptoms (same as yours) before being diagnosed with Lyme.  I was put on metapropolol (lopressor) for the heart palps/tachycardia and my bp actually came up (the Dr. explained that my heart was finally beating more efficiently).  We now deduct that the lyme was affecting the nerves around my heart.  Since being treated for lyme I have cut back the lopressor to 1/4 original dose, ready to phase out completely.  But it helped me tremendously while I needed it.  Good luck, hang in there!
Posted 9/18/2011 2:31 AM (GMT 0)
Thanks for all the support...it's about the only thing that helps these days!

I'm seeing a LLMD, but honestly I feel like she's really dropping the ball and that's really contributing to why I'm so uneasy and scared; I don't feel like I'm in the best hands anymore. I'm trying to watch my diet but it seems like what's good for one thing is bad for another...between having yet another ulcer, food allergies, and the fact that every time I eat my upper body goes completely numb...it's all I can do to eat enough calories throughout the day.

I'm taking a ton of supplements...too many I think, but what I really think I need to do is stop treating the Lyme for a minute and address all the other issues that keep coming up...candida, gastritis, adrenal dysfunction, the low blood pressure (as not being able to be upright is the most limiting of my symptoms right now) but my doctor doesn't seem to be interested. She's also not promoting any kind of detox which I think especially for my own body (serious exposure to mold) is critical....

Right now I'm on 300mg of Doryx and 1000mg of Tindamax...I was given Ceftin (I forget what dosage) but I haven't even been able to start it yet because I know I cannot handle feeling any worse. I'm considering making an executive decision to cut back on all antibiotics for a few days (which I have to decide on my own I guess because I can't wait another full month to talk to my doctor about it).....it just seems like the herxing is SO MUCH WORSE this time than it was last time, and I haven't added anything new. It doesn't make sense. How do you know if it's just the ups and downs of Lyme treatment or something else?

Posted 9/18/2011 2:55 AM (GMT 0)
Get on an anxiety medicine. No offense but ..... If you doctors are writing it off as anxiety then take their advice and at least prove them either right/wrong. If you take the anxiety medicine and some symptoms go away then you can see that it's anxiety -- And if not at least you can show them that you tried to take the meds, maybe if you try like an SSRI it will help. And again...if it doesn't help then you know you can go back to them and say that it can't be anxiety .... totally not saying this is in your head but i will say (personal experience) that anxiety / stress can do the craziest things....it can cause physical symptoms and chronic stress/anxiety is much worse bc then it becomes somatic .... i would say, try an SSRI or some form of anxiety medication and see if it helps .... i feel for u :(
Posted 9/18/2011 9:41 AM (GMT 0)
Hi borderlyme, sorry you are feeling so poorly still.

I just posted on another thread that it is better to skip a dose or lower a dose rather than stop meds altogether. Stopping will just let the bugs rally and you'll another big herx when you start them up again.

Yes, your symptoms can be something other than Lyme -- but it usually isn't. I blame a lot of stuff I'm feeling on the viruses that get handed around especially in the winter. Truth is, though, that they are just causing an increase in my Lyme symptoms so getting rid of the
Lyme is the most important thing.

Just because your doctor doesn't promote detoxing doesn't mean you shouldn't do it. You know your body. I truly believe that it will help you with your physical symptoms as well as your mood.

I'm not a medical professional, but here's what I would do in your case. Reduce the abx for a couple days but get back up to full dose as soon as possible. Stop taking the supplements and reintroduce the individually to make sure none of them are causing problems. Start detoxing regularly. Address the candida - very important - there are homeopathic remedies that work very well. Find something good and nutritious you can eat; High protein fruit smoothies made with kefir? Whatever works with your food allergies. There are also very effective natural and homeopathic remedies for mood and anxiety. My LLMD recommended SAM-e for mood and Rescue Remedy for anxiety. They both worked for me (I have no vested interest in those companies).

Well, hope you feel better.
Posted 9/18/2011 2:42 PM (GMT 0)
I agree with Achievinggrace , but why even reduce the abx? You said that you are taking "a ton" of supplements - be careful to reduce those rather than just stopping them too. It sounds like your body may already be in crisis mode, no need to see how much more it will tolerate. smhair No one wants/needs that!!

Take some time to reduce your supplements - say by lowering your dose each day for 3 days before stopping each one???

Kefir will go a long way in helping you to reduce the candida in your body. There is a lot of info on the internet about kefir and the good it does, if you don't already know about it.

As Lymester said, detoxing is very important! I really don't understand why every LLMD doesn't already know this, but they don't know everything any more than we do. Please do start detoxing if you are not - just be sure to start slowly!

To what extent do you believe your adrenals to be in crisis? Are they not functioning very well, or have they almost stopped functioning? If it's the latter, then there are some really good adrenal supplements available! I use a homeopathic one that is working well for me.

It is pretty important for you to eat as well as you possibly can. Other than avoiding things that will irritate your ulcer and whatever food allergies you have - just eat a good healthy diet. Plenty of protein and plenty of veggies!! Don't try to follow any other diet right now, wait until you don't have so many issues that are really dragging you down.

Please don't start anything for thick blood unless (a) you have been tested and know that you have this condition (otherwise there could be a bleeding issue) and (b) only use something like that while being seen and tested regularly to be sure you are taking the right amount for you.

Lastly - hang in there! As I seem to be saying a lot these days, our members are our best resource!! We are all here to help you through this rough time, just don't do anything rash - you are ill enough without complicating anything!
Posted 9/18/2011 3:28 PM (GMT 0)
Today is the first day in weeks that I don't feel like I'm going to pass out! Skipped all my antibiotics yesterday...I think that must've been it. There's a bug going around, and I spent some time in seriously moldy house last week....I kinda had a feeling I needed a minute to detox without killing any more bugs.

I've been wanting a test for thick blood but everyone keep writing off any idea for tests that I come up with (even though I'm always right in my suspicions). I've been on anxiety medication since this all started and its helped with anxiety but nothing else. They say I'm having panic attacks and hyperventilating...I say I have anxiety BECAUSE there's not enough oxygen. Ive been trying to detox with baths and lemon water although I've noticed swelling in my upper right abdomen the last few days so I'm wondering if my liver is getting angry....

I'm not sure what's up with my adrenals but preliminary testing came back all messed up....the sheet with results says to do more tests but my doctor kind of just glazed over that, put me on another supplement and I'm starting to wonder if any of these supplements are helping.

I feel like I'm back where I was before I knew it was Lyme..taking a million supplements to treat symptoms but not getting anywhere. I just thought that after so many years FINALLY treating the root cause of all my symptoms would be a lot easier. I guess I'm just having trouble accepting this whole thing right now. It's been my life since I was 12 and now I'm 24 and I'm just so sick of missing out.
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