A few weeks ago I decided to venture into the water again. The medical world water, that is. My twins have lyme disease, and some of our symptoms are very similar. At 33 months off of Klonopin and still having body symptoms, I thought it was time to delve a bit deeper to rule out any other conditions that could be causing my problems.
I saw Dr. Kaufman, in Mountain View. He looks like Alan Arkin’s twin. Sounds like him too. He’s adorable, and he’s a good person. I’ve got super sensitive doctor radar now, and he passed the test. He works with people who have immune issues.
He tested me for a gazillion things. I wasn’t kidding about the 17 tubes!! My blood work came back and my poor body is action packed with issues.
Viruses that should be kept under check with my immune system are active again. Cytomegalovirus, all the childhood forms of herpes, chicken pox, and epstein barr are all showing up abnormally in my blood work. My vitamin B12 level was low as was vitamin D. (Which is hard to believe since I practically live out in my garden, sans sunscreen.)
The doctor and I wonder if the stress of withdrawal caused my immune system to weaken. People who have Chronic Fatigue Syndrome have joint pain. Check. Me too. They have fatigue. Check. Me too. They have exercise intolerance. Check. Me too. They have muscle aches. Check. Me too. So have I now acquired CFS, or is this still wd?
My killer cells may be out of whack as well. The lab mangled the test, and it had to be redone. But chances are good that it will come back abnormal.
What does that mean for us in withdrawal? I don’t know. But I am curios of if immune dysfunction plays ANY role in protracted withdrawal. It would be awesome if other people got tested to see if we have any common denominators.
What can be done about the condition? Well, there is a new antiviral medication that is supposed to work wonders. But…… I’m not jumping on board just yet. No sirree. Not after one pill made my life FUBAR… fucked up beyond recognition.
Here’s what I am doing: I am juicing every day. Without fail. I am remaining gluten free. I am taking Vitamin D. I am taking Oil of Oregano. I am also looking into taking Turkey Tail mushrooms. Possibly growing my own. If you haven’t watched the TEDMED talk with Paul Stamet, you may want to consider checking it out.
Another possibility is I have chronic lyme disease. I’ve been tested before. Its a long story about those results. I gave 11 more tubes of my red stuff to be tested for Lyme plus co-infections, and a few other groovy things on Tuesday. No matter what they cause, lyme or withdrawal, I know things will get better. I have come SO far in healing from the mental crap. I know my body will get better too.
I can’t help but wonder if immune issues are at play in those of us that take so long to heal. I did get good news from my test. My cholesterol is fabulous. My blood sugar is pristine. Yeah!
I will keep you posted. Curious what your thoughts are about immune issues and withdrawal.
Jenn
Thank you for sharing these details of your medical quest. My immune system is strong in that I have had few infections since w/d began. Recently I have swollen lymph nodes. Have had fatigue off and on my entire life, pronounced during w/d especially past 18 mos. Don’t know if this helps you but felt the need to post. Be well!
I still believe it’s protracted benzo withdrawal and will resolve eventually with time, but if the bloodwork leads to treatments that could help or points to something that made you susceptible to protracted to begin with, then that would certainly be well worth knowing. Best of luck in your search for answers.
This all rings so true. I’ve had so many lab/medical tests honestly I’m just at the point I give up. I have so many medical bills I’m about ready to file bankruptcy. All acquired towards the end of my Klonopin use and withdrawal. I have had so many blood tests, a brain MRI with contrast, heart halters you name it. My withdrawal symptoms mimicked Lyme disease, MS, fibromyalgia, chronic fatigue, etc. all the tests came back negative. And I am most certain I acquired the label of hypochondriac. But over a year out I feel better than ever. Each symptom slowly slipped away. I am however left with heart PVCs. And I have days now where they’re very quiet. I had to stop eating gluten and cut back on carbs. Life is very different but it’s also better than ever. I think out of all of the benzo withdrawal stories I have read yours seems parallel with mine. Thanks for everything.
Thanks for the reply Cheryl. I assume my immune issues were caused by WD and they will turn themselves around without medical treatment. I hope so at least. The LAST thing I want to do is to take more pills. AMIRIGHT? 🙂
Thanks Vita! I think it will resolve in time as well.
I read about people who took four to five years to heal. I may be one of them. Clearly some issues ARE wd, as the bottom of my feet are tingling so much right now I feel like I walked over a bee hive. That is classic wd. 🙂
Thanks Holly! Glad your immune system is going strong. yeah! Be well.
I just don’t know where to start. Pelvic disease brought me panic (Xanax). Hormone suppression brought more panic, no sleep wrecked immune. Tried many more drugs. Klonopin and ambien stick.
Have worked to restore immune system holistically since but olagued with allergies and migraines. Now maybe hypothyroid. Do I keep chickenning out if that next med cut.
I am sitting here feeling that my scalp is being tipped off, because?! All that I will take is Tylenol and trying to breathe deeper and not imagine my head is about to blow off! This episode may have started with running my neti pot too
Hot through my poor sensitive nose the other day. Hormones too I assume. Can barely eat, sigh…
hang in there Julie
Your CNS will right itself. Give it time. Be gentle with yourself. sending you good energy tonight. May you sleep well tonight.
I would be terrified of taking an antiviral drug right now. You’re doing so well right now and have come a long way. Like you said many take 4 to 5 years to completely heal. Our bodies obviously go through tremendous stress during withdrawal. I think you are still there but are slowly and gradually getting better. With good healthy living I think we’ll get there on our own. In a bad wave of my own right now at 14 months. Man, it’s so hard. Diane murphy
Dr. Jen!
I couldn’t resist posting because I am doing the same thing. I am back on Boston and decided it might be a good time to take advantage of the wealth of excellent health care. I don’t actually have much to add because I am treading much more lightly. I am still traumatized by all the shitty doctors I had during my withdrawal. All I’ve done so far is take an ANA (negative) and schedule a neurology apt. Most of my physical symptoms are gone but my depersonalization is still extremely disruptive. Good luck on your journey and keep us posted!
Geneva
Just curious. Is your new doctor a benzo wise doctor or did you educate him. Just curious about that
I’m on the same healing quest too Jenn and have come to know that healing from Benzo WD is often more than waiting around for receptors to upregulate. There is a great book called CFS unraveled by Dan Neuffer (I think that’s his name), you can get it on kindle. CFS is far from understood and the symptoms that are called CFS can often have arise in multiple ways. The premise of the book is that CFS is a state of dysregulation of the autonomic nervous system (sound familiar) that can be brought on by any number of sources but is then self perpetuated by a number of factors. This often leads to other systemic breakdowns in the body especially in the endocrine system. Anyway, too much to delve into here but the book provides a great way to view what we in protracted WD are living with, a dysregulated nervous system, and provides useful insights into how you can help massage the nervous system, and all the various systems, back into place. Hope this helps.
Scott.
Withdrawal has brought me a lot of suffering but for the first time in many,many years my immune system is working better!After 6 years I’m having my period again and my allergies are much better .
It’s as if everybody is hit differently and that is quite confusing.How can we learn from each other if there doesn’t seem to be a pattern?
Probably there is one but it would require much more information and study.
Get well!
Sounds like protracted withdrawal to me and you haven’t fully healed yet. NO ONE knows why we get protracted symptoms, as they haven’t studied people in protracted withdrawal from benzos/psych meds. I think CFS is a stretch- it’s just a syndrome anyhow, a bunch of symptoms, not an actual disease. Are people who are on psych meds falsely diagnosed as having CFS in the first place b/c no one took into account that polydrugging causes similar symptoms? I think your answer is taking care of yourself, eating well, exercising to the point you can tolerate and….passing more time.
An antiviral medication sounds absolutely EXTREME and there is no way I would touch it.
Dr. Jenn, I just want to tell you that I also have been tested for many things and gone broke due to all the medical bills.. I almost died one year ago with diverticulitis and a micro perforation in my colon. They wanted to operate an give me a colostomy bag. I left the hospital after 2 weeks and decided to stop any and all meds. Started researching klonopin and all the other horrible drugs. To my surprise the meds were the culprit of my problems. I was told I could have a brain tumor? MS, shojgrins syndrome, IBS,colitis, diverticulitis, all Dx by Drs ,and tested for many things. My white blood cell count was always high and platelets were high? I was told many times after seeing different Drs to get MRI of brain. Which I refused. It is just plain scary!! I’ve lost everything I have and all confidence in the medical profession. I am improving. Since my memory is so bad I guess I have been trying to get off klonopin for over a year. I know the cold turkey part is 70 days today with nothing not even aspirin in my body. You are still young and will pull thru this. I’m older and wonder if I’m ever going to have any quality of life left. This is so scary. I want to take some kind of action and help others who get trapped in this horror we are going thru. Thank you so much for this web site and all of your info. I would be lost without it..
Sincerely,
Diane
From Waxahachie, Texas
Jenn….I’ve had bloodwork done as well….showed I am hypothyroid/hashimotos, showed my cortisol was way off, was low on manynutrients: D, B12,b6, magnesium etc. I am not able to take supplements so am trying hard to get it from food, which is the best way, I am told. I’m sure I have Leaky gut, which would account for the malabsorption issues. I don’t know anything about my immune system…but I have not been sick with anything in these last four years…knock on wood…..I am 43 months fron a klonopin c/t….and tapering Prozac for almost 3 years and almost done. I would also stay away from the anti viral med….sounds ominous to me. I am following an auto immune way of eating and trying to get my hashimotos under control….you might also want to check out Dr. Terry Wahl’s who put her MS inti remission through her diet. She’s on YouTube. I believe much of your bloodwork results are due to the withdrawal damage and that it can and will heal. Our bodies have taken a huge beating through all of this and feeding it well is one of the best things we cando….check out leaky gut…..many illnesses and other maladies , such as allergies come from this. Our immune system is in our gut, so that’s the place to start, in my opinion.
I’m so sorry about your situation. I have left the alopathic system for real cures, not the disease maintenance and symptoms management approach that was given to be so far. I suggest looking at Dr Robert Morse ND on YouTube for the actual cure for your Lyme. He has done it. Bill
Hey Geneva,
I just returned to the Boston area as well and have begun to see more in the way of improvements than I had in the past two years. I am closing in on three years off. I may have some health practitioner contacts for you if you are interested. Maybe Jenn can connect us. I have cut off from allopathic medicine as well. Oh, for all the others I have found that my TSH is high too (hypothyroid), but I’m resisting taking synthetic hormones for now. Strive on, Scott.
Hi! I really do hope all will be ok and there is nothing else wrong. I just wanted to mention that I have had all the symptoms you have described and I too have been wondering if it was from benzo med./WD and Im still healing or my other health issues I have. I have a pituitary tumor, non fatty liver, tumors on my liver and low ferrtin level. I do know that since my doctor at Mayo Clinic put me on iron pills for low ferritin it does help with my fatigue. So if you are low in b12 I would suggest asking a doctor to check your ferritin level… but do not take iron pills unless a doctor tells you to as the body cant get rid of excess iron from the pills if you dont need it. So I was just thinking maybe you might have low ferriting? Hope we all start to feel better! Have a great weekend. 🙂
Hi Jenny
Thanks for the reply. My iron levels were fine. So were cortisol. I’m juicing every day and I am looking into mushrooms to boost my immune system. I cooked shitakes with garlic today. Nom. Nom.
Have a great weekend!
Jenn:
You may be on to something here..I too wonder why some have such a hard time with withdrawal…I do not have a thyroid due to thyroid cancer a fee years ago. The reason I was put on Xanax was because of a panic attack that basically didn’t go away for 2 weeks…the panic attack could have been due to my way over suppression with synthroid. I also have a history of generalized anxiety disorder, but it had been under control for years. Needless to say, I believe that the long panic state caused my adrenal system to go out of whack! I too might have a leaky gut, but not sure. So, I believe my lack of thyroid makes me sensitive to a lot of things! My psychiatrist who prescribed Xabax did mention another woman who also had thyroid issues that seemed to have inter dose withdrawal while on Xanax (just like me). I have a twin sister who takes Lexapro and Xanax once in a great while…and nothing! She seems to be fine. She has a thyroid! Of course I tell her to get off those meds but she won’t listen…although I don’t think that she will have a hard time getting off or withdrawing. So, you are right…I do believe my immune system was off prior to and during withdrawal!!!!! It still is!
Jennifer and other women in here, please look at this thread <3 http://www.medhelp.org/posts/Menopause/Menopause–Arms–hands–legs-and-feet-numbness/show/342458
http://nahypothyroidism.org/comprehensive-list-of-thyroid-symptoms-printable-checklist/
http://www.patient.co.uk/forums/discuss/tingling-from-head-to-toe-62894