Should I Try Going Back On Antidepressant?

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Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/30/2017 8:52 AM (GMT -6)   
I saw a neurologist yesterday because my LLMD actually wanted me to see one. I think he wanted me to be checked for lesions but the neuro I saw is not lyme literate and pretty much told me she takes the middle road with chronic lyme. She's not completely on board with it but not completely against the idea either. Yeah, very helpful right?

I was there because of my severe cognitive decline and sat in her office already very confused and fogged out. She did the basic memory tests with me. I did pretty well but had to really try hard and focus all my energy on answering the questions.

Anyway, she was asking about my past history with other meds, depression, anxiety etc other than the Lyme. I told her that I had suffered years of chronic pain, migraines, "fibro", joint pain and swelling , etc. Also have a history of anxiety and depression, this seems to run in my family on one side.

I told her up until about 18 months ago, I was dealing with all of that but that the cognitive decline, memory loss, brain numbness, ear ringing, and I think maybe heart palps, really didn't seem to take center stage until the antidepressant/anti anxiety med I had been on for 8 years just suddenly seemed to stop working for me. I tried many others after that one but all seem to worsen my brain fog and turn me more into the zombie I am today. This could all be a coincidence of course. And there is also the possibility through all of this that I was reinfected.

The antidepressant I was on was Effexor XR. And actually, it worked great for years. It really did help me with anxiety and depression. I felt more "myself" then ever really. Getting off of it was horrible. But I realized that that's really the last time I felt any thing close to myself. It made me incredibly sick to get off of it which confused things even more in terms of getting an accurate diagnosis for my years of illness.

Once off I was glad to be off after reading many many horror stories about this drug. It works but it is very dangerous and the effects are sometimes long lasting. Some never are able to stop it at all. In a nutshell, this neuro's theory is that I may have lyme but not "neuro lyme" ( I really can't agree with this) But that my dementia like symptoms and disorientation is from discontinuing the drug and not replacing it with something else. ( Again, I tried many since but am now afraid of making things even worse again.)

The weird thing is, I don't feel anxious really. I used to suffer horrible anxiety and when it came back is when I realized my med stopped working all together. I'm depressed of course because I've lost any quality of life, have nothing left and in a constant zombie state and can't remember anything but it's hard for me to cry or get emotional. It's more that I'm always just apathetic and detached completely from myself and life. I have been blaming this on the Lyme. But she basically things this just could be a piece of the puzzle that could be helped by medication.

I argued with her that my other symptoms, could not be caused by anxiety or depression (IE,red stinging eyes, stabbing pains, eye pain, etc.) The heart palps could probably fall somewhere in the middle I guess. I really wish I could have seen a lyme literate neuro but there are none around here. I would have to travel and pay out of pocket which I can't afford to do.

So this was yesterday and I discounted everything she said since she didn't seem knowledgeable about lyme. To make matters worse, my sister was with me and was basically taking the docs side with everything. The neuro agreed to do an MRI but said if there were lesions she wouldn't know what to do about them basically, she wants me to see a neuro psych and half eight hours of psych/ cognitive testing. I can't even fathom that right now. My whole day and night revolves around meds, herbals, detoxing, etc. And my brain gets exhausted from even the simplist of thoughts. It's like thinking through mud 24/7. According to her, depression, GAD and depersonalization could cause all of these dementia like symptoms.

Now I'm thinking, maybe she could be right about the antidepressant. I already thought for months maybe that was the reason for some of my many symptoms. It could be a piece that I could do something about. I was thinking for months before my diagnosis that maybe I should try a low dose of effexor again but I really, really do not want to go back on that drug or any antidepressant again. But, if it would make me feel even the slighest bit "normal" again..


Also, my integrative doc recently put me on low dose naltrexone. I've only been taking it for two days so don't know what the effect will be. He said it should help with depression , insomnia, etc. Also, he has been testing my thyroid which is what I originally thought my problem was. My T3 has been at the lower range of normal for months, now with this most recent test, my T4 is low. He believes I may have hashimotos which would also explain some of my cognitive problems, heart palps., etc.

He wants me to do one more test before he"ll put me on medication for it in a month. I've been playing this game with him for months now. I'm so sick of these docs saying come back in a couple months, a month, etc. Really? If something can help me now, why not try it??? Is he waiting for me to get full on dementia? I really don't understand. Coincidently, my Thyroid could have started to be effected around the same time as the effexor poop out. Something made me crash completely. And there are other options besides these two as well. This is maddening to try to figure out on my own.

Should I wait and see with the LDN if that improves anything? Or should I try going back on a low dose of effexor? Or maybe there are natural alternatives that work in a similar manner that I could try? So far I've heard of L tyrosine, moucona bean ( sorry for spelling), kava kava, 5 htp, etc. I really don't know which one to try. Too many options for anything overwhelm me a great deal these days. I feel like something has damaged my brain. Just don't know if that is Lyme, anxiety,low thyroid, gut health, etc and all these meds I was drugged with over the years. I really don't know anymore and all these docs just have me chasing my tail all over again which I've been doing for years now. Really tired of it.

I feel like my LLMD or at least one of these docs should be able to put this puzzle together for me but none of them are. Really discouraged and yeah, depressed.

I know my posts tend to be long and jumbled and probably annoying to read. So anyone who has the patience to and attempt to help me through this confusing mess, know that I very deeply appreciate it.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 12/30/2017 9:30 AM (GMT -6)   
Its not uncommon for newer members here to be overwhelmed. But then realize there have been many others in your shoes too, some who prob thought that they were even going to die from this, and later improved.

With so many things going on which have overlapping symptoms, its hard to tell whats improving, if anything.

One thing I did here is book mark posts, or copy the good parts onto a word document page, where I could save and print it. I did better with post it notes, and printed paper when I needed to reference "good stuff / healing info".

There have been a few anxiety posts these last few months, one recently.

about your thyroid:

".......Also, my integrative doc recently put me on low dose naltrexone. I've only been taking it for two days so don't know what the effect will be. He said it should help with depression , insomnia, etc. Also, he has been testing my thyroid which is what I originally thought my problem was. My T3 has been at the lower range of normal for months, now with this most recent test, my T4 is low. He believes I may have hashimotos which would also explain some of my cognitive problems, heart palps., etc............."

NOTE : ****Anti-depressants WILL NOT fix thyroid issues.****

For actual hashimoto version of hypothyroid, you need two antibody tests done; TPO and TG if one or both are elevated, that indicates hashimoto. Even if its regular hypothyroid, low t3 and or low t4 often create symptoms you mentioned and anxiety and depression. Since these are also overlapping symptoms with other things going on, at least some of it could be improved from additional thyroid intake.

Many here have vegged many days on the couch, it gets old real fast. Those days will improve.

I will say, you clearly have the ability to write a longer post. Thats hard to do with cognitive issues.

Post Edited (astroman) : 12/30/2017 11:24:28 AM (GMT-7)


astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 12/30/2017 10:02 AM (GMT -6)   
Anziety and depression can be somewhat independent, but can be closely related too.

This was a recent comment of mine about anxiety in ANOTHER post; but these also work for depression. (Holy basil and Niacin prob wont do much for depression, as both are adrenal calmers.)

.............."When dealing with anxiety, you need to look at the whole picture. There is a lot adding up to it. Rx anxiety meds cover up these symptoms through different means, but there are natural alternatives with less side effects.

Although the cause of anxiety may be from these bugs and toxicity caused from killing them, further eradication wont make your anxiety any better in the immediate short term, but should in the long term when they are under control.

These infections can alter the endocrine system (adrenals,thyroid, and blood sugar) which can further raise havoc on an otherwise calm brain. This system should be looked at individually (all three) in all individuals experiencing anxiety with lyme. I will not go into details on this post though, since that's not what you asked.

You asked for immediate relief, which is still a band aid, but at least a natural one:

Anxiety attack short term relief in 5 minutes: B3 Niacin, get the type that causes facial flushing, goggle it.

More gradual / hour later relief with less drowsiness: Lithium Orotate 5mg, Holy Basil capsules

More gradual / hour later , but possible tiredness: 5 HTP, GABA, Magnessium glycinate or mag calm powder.

Worth mentioning, not as powerful unless high doses, then tiredness will result: valerian root (natures real Valum), passion flower....."...........

An easy and fordable place to start is 5 HTP (50-100mg day) plus Lithium Orotate in 5mg (1-2 per day). If you need more, you take a little more, your in control. 5HTP is an amono acid , Lith is a mineral salt. These are common with plenty of info on the web. Dont take these along with Rx "happy" meds.

For mself and I would imagine others as well, there is something to celebrate when you are able to help your self to some degree (thyroid you cant, Rx needed), which turns up the happy meter.

If there is anything you can do as far as interests or hobbies from the past, do these again. Some you cant do, some you can. As a somewhat specialized expert, then pro ranked athlete for years in the past, lyme changed my lifestyle and the social life/friendships/travels that come with that - so I resorted to other easier and simpler interests. They say variety is the spice of life. To some degree it is. Sometimes we have to play the cards were dealt with. I still go spectate at least once a year or "you tube" these events, as it brings back great memories to almost be there. You tube can be great entertainment.

Post Edited (astroman) : 12/30/2017 11:37:54 AM (GMT-7)


PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 12/30/2017 12:11 PM (GMT -6)   
Mergirl, I have no idea how to advise you.... I do think it may have caused you more stress seeing a neurologist that doesn't believe in lyme. I'm so sorry about that.

neuro agreed to do an MRI but said if there were lesions she wouldn't know what to do about them

Then why would he suggest or order the test?????

I sure had depression with my lyme and anxiety also. I went and talked with a GP that was so kind and caring. She gave me a script for an anti-depressant and I kept it on my desk for months. It was nice to have the script there in case it got really bad. I healed and shredded that script and was thankful I never had to start taking it.

However, I did do Kava, passion flower, essential oils and all kinds of combo herbs. Hawthorn was a good one and it also was heart helpful. You will have to experiment and be your own guinea pig. There are so many options. Do you have an herb store in your town? That is a good place to start.

You listed a great list of helpful herbs. You will just have to try one, give it a chance and if it doesn't, them move on to the next.

/draxe.com/natural-remedies-anxiety/

I found that doing this breathing exercise really helped keep me calm in many situations.

/www.drweil.com/videos-features/videos/breathing-exercises-4-7-8-breath/

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/30/2017 6:38 PM (GMT -6)   
astroman said...
Its not uncommon for newer members here to be overwhelmed. But then realize there have been many others in your shoes too, some who prob thought that they were even going to die from this, and later improved.

With so many things going on which have overlapping symptoms, its hard to tell whats improving, if anything.

One thing I did here is book mark posts, or copy the good parts onto a word document page, where I could save and print it. I did better with post it notes, and printed paper when I needed to reference "good stuff / healing info".

There have been a few anxiety posts these last few months, one recently.

about your thyroid:

".......Also, my integrative doc recently put me on low dose naltrexone. I've only been taking it for two days so don't know what the effect will be. He said it should help with depression , insomnia, etc. Also, he has been testing my thyroid which is what I originally thought my problem was. My T3 has been at the lower range of normal for months, now with this most recent test, my T4 is low. He believes I may have hashimotos which would also explain some of my cognitive problems, heart palps., etc............."

NOTE : ****Anti-depressants WILL NOT fix thyroid issues.****

For actual hashimoto version of hypothyroid, you need two antibody tests done; TPO and TG if one or both are elevated, that indicates hashimoto. Even if its regular hypothyroid, low t3 and or low t4 often create symptoms you mentioned and anxiety and depression. Since these are also overlapping symptoms with other things going on, at least some of it could be improved from additional thyroid intake.

Many here have vegged many days on the couch, it gets old real fast. Those days will improve.

I will say, you clearly have the ability to write a longer post. Thats hard to do with cognitive issues.



Thanks astro,

I will say I am for sure overwhelmed to say the least. For months now. Just don't know if all this worsening brain stuff is normal or if something is making worse, etc. Like you said, very hard to be able to tell if anything is improving. I know a few of my other symptoms have improved some. Just frustrating that the one most troubling ( or two, guess I do need my heart too!) don't seem to. I feel like I herx every single time I take abx and sometimes even the herbs and I feel like all I do is detox.

I do appreciate the reassurances. I can relate some to what you said about vegging on the couch. It's just hard for me to do that now. I spent the last few years doing that in too much pain to move before I knew what was wrong with me and the first half of this year, now I guess I'm more in fight mode the last couple months. I actually thought at one point watching too much tv was causing my cognitive decline so I stopped all together. lol Then, and now actually, it's just too hard for me to focus sometimes and I get too frustrated. Same with reading.

I just checked the lab slip and the tests he wants me to do are Thyroid Peroxidase and Thyroglobulin Antibodies. Are those the ones you are referring to?

"I will say, you clearly have the ability to write a longer post. Thats hard to do with cognitive issues."

Yeah, it surprises me actually. It takes ALOT of mental energy though. Some days I feel so out of it and crossed eyed, I just can't post at all. The old me would have known better how to edit and shorten things so I'm not posting books. Now it's like this stream of conscious typing in some kind of pathetic desperation for help and feedback and I just hit send. I'm hoping that me comes back soon as I'm sure anyone who actually attempts to read these posts does as well ;) I'm glad you did though esp since I had thyroid questions!

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 12/30/2017 7:08 PM (GMT -6)   
"I just checked the lab slip and the tests he wants me to do are Thyroid Peroxidase and Thyroglobulin Antibodies. Are those the ones you are referring to?"

- yes, perfect. These two tests have a limit (not a range) which should be on the report. And the limit can be different based on the test machine calibration/brand testing your blood.

Its amazing how "digital optical comparitors" can count stuff in your blood with the help of other additives mixed with it. I've been to a live demonstration. The one I saw was about the size of a household refrigerator on its side.

My couch time today is spent relaxing or napping vs lethargically staring at the ceiling while feeling my heart flutter away. That really sucked.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/30/2017 7:42 PM (GMT -6)   
astroman said...
Anziety and depression can be somewhat independent, but can be closely related too.

This was a recent comment of mine about anxiety in ANOTHER post; but these also work for depression. (Holy basil and Niacin prob wont do much for depression, as both are adrenal calmers.)

.............."When dealing with anxiety, you need to look at the whole picture. There is a lot adding up to it. Rx anxiety meds cover up these symptoms through different means, but there are natural alternatives with less side effects.

Although the cause of anxiety may be from these bugs and toxicity caused from killing them, further eradication wont make your anxiety any better in the immediate short term, but should in the long term when they are under control.

These infections can alter the endocrine system (adrenals,thyroid, and blood sugar) which can further raise havoc on an otherwise calm brain. This system should be looked at individually (all three) in all individuals experiencing anxiety with lyme. I will not go into details on this post though, since that's not what you asked.

You asked for immediate relief, which is still a band aid, but at least a natural one:

Anxiety attack short term relief in 5 minutes: B3 Niacin, get the type that causes facial flushing, goggle it.

More gradual / hour later relief with less drowsiness: Lithium Orotate 5mg, Holy Basil capsules

More gradual / hour later , but possible tiredness: 5 HTP, GABA, Magnessium glycinate or mag calm powder.

Worth mentioning, not as powerful unless high doses, then tiredness will result: valerian root (natures real Valum), passion flower....."...........

An easy and fordable place to start is 5 HTP (50-100mg day) plus Lithium Orotate in 5mg (1-2 per day). If you need more, you take a little more, your in control. 5HTP is an amono acid , Lith is a mineral salt. These are common with plenty of info on the web. Dont take these along with Rx "happy" meds.

For mself and I would imagine others as well, there is something to celebrate when you are able to help your self to some degree (thyroid you cant, Rx needed), which turns up the happy meter.

If there is anything you can do as far as interests or hobbies from the past, do these again. Some you cant do, some you can. As a somewhat specialized expert, then pro ranked athlete for years in the past, lyme changed my lifestyle and the social life/friendships/travels that come with that - so I resorted to other easier and simpler interests. They say variety is the spice of life. To some degree it is. Sometimes we have to play the cards were dealt with. I still go spectate at least once a year or "you tube" these events, as it brings back great memories to almost be there. You tube can be great entertainment.



Thanks smile

I'll definitely start doing some research on those suuplements you mentioned. I DO think however that there is definitely an adrenal component in my case. Perhaps one of the major problems that could hinder my progress. Earlier this year, before I knew I had lyme, I took two weeks of an oral steriod. Worst decision I ever made. I was sure they would kill me, now I know why.

I've felt worse and very very "off" ever since. It was starting before that but it for sure pushed me over the edge. Way over. Couldn't eat, sleep, complete catatonic state, pain everywhere and crushing crushing fatigue. I did not leave my house in a month, not even for my weekly docs appts, chiro, acupunc, etc for all these seperate issues all these docs said I had. But not lyme! Never Lyme!

So yeah I think adrenal fatigue could be another piece for me. Unfortunately, no docs I am seeing currently are any help with it. I'm trying to do the best I can on my own right now, getting more sleep, or trying everything I can to. Diet, etc. But yeah, i think these all may be part of the bigger picture esp where my cognitive decline is concerned.

Thanks for reminding me to try to find some new hobbies, things I enjoy. I do think it's important to try. I just get so frustrated all the time when its hard for me to think or feel. I feel like I dont know what I could do that I would enjoy anymore. I used to be such a social person and now I'm alone allll the time. Not by choice either but it's just the way it is right now until I improve I guess. I'll try to think of some things to experiment with though. Thanks astro.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/30/2017 7:54 PM (GMT -6)   
PeteZa said...
Mergirl, I have no idea how to advise you.... I do think it may have caused you more stress seeing a neurologist that doesn't believe in lyme. I'm so sorry about that.

neuro agreed to do an MRI but said if there were lesions she wouldn't know what to do about them

Then why would he suggest or order the test?????

I sure had depression with my lyme and anxiety also. I went and talked with a GP that was so kind and caring. She gave me a script for an anti-depressant and I kept it on my desk for months. It was nice to have the script there in case it got really bad. I healed and shredded that script and was thankful I never had to start taking it.
kinds of combo herbs. Hawthorn was a good one and it also was heart helpful. You will have to experiment and be your own guinea pig. There are so many options. Do you have an herb store in your town? That is a good place to start.

You listed a great list of helpful herbs. You will just have to try one, give it a chance and if it doesn't, them move on to the next.

/draxe.com/natural-remedies-anxiety/

I found that doing this breathing exercise really helped keep me calm in many situations.

/www.drweil.com/videos-features/videos/breathing-exercises-4-7-8-breath/[/quo
However, I did do Kava, passion flower, essential oils and all te]


Hey, thanks Peteza smile

I really didn't want to see a non lyme literate neuro. My current LLMD pretty much made it a requirement that I see one. He didn't recommend one for me and he MUST know that there aren't any chronic lyme believing neuros here. So it was a big waste of time and money. He wanted me to get the scan but again, why not tell me who to go to instead of making me just pick a general neuro and ask for a scan myself? Very frustrating. This is one of the many reasons why I have been losing faith and having so much hopelessness and uncertainty here.

I sure wish I could see your LLMD. She sounds very supportive and helpful!

In many ways I already feel like my own guinea pig. I have felt very much on my own with trying to figure all this out. But so impossible to do when I'm so out of it all the time. I will start picking one thing at a time and trying it in case anxiety and depression is an issue. Well, I guess it is but like you, I think I would feel a lot less depressed if I started to feel better and more like myself again!

I believe there is an herbal store here. It's hard for me to get around these days so I just order most of my herbs and stuff online. Still trying to figure all that out too. I'm exhausted. I will try to take a trip to the one here though. Maybe they can be of some assistance to me. Good idea.

Thanks for the links. I'll check those out now. Thanks again smile

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 273
   Posted 12/30/2017 10:02 PM (GMT -6)   
Hi Mergirl,

I kind of know how you feel. I have a family history of depression and weird cognitive issues, and I had a lot of anxiety that really got worse with the lyme. I had sort of a weird episode a few years ago where my brain shrank and my anxiety went through the roof and I got horribly sick. I definitely had some brain damage. Not sure what really caused it, but I'm sure lyme and company had something to do with it. Also. the treatment I was on was not helping or making me worse.

I was put on Xprexa for I'm not sure what and some other stuff, and I started to get horribly depressed. I was on it for maybe four or five months and the depression lasted about two months after I stopped it. I had only gotten depressed about twice before that, and it only lasted for a couple weeks.

Also just my slow brain was depressing. I couldn't even follow a recipe. I know exactly that "detached" feeling. How long have you been off meds? Maybe it is still withdrawals. It took me a long time to get rid of that weird feeling. I know once you are on depression medications it can be really hard to get off. I know someone who got really sick when they tried to get off. My advice would be since you are off meds and not really sick, you should stay off of them, and do something to treat the lyme disease. Going on a good diet and doing things to help heal your brain helps too. Everyone is different and that is just my personal experience.

I think adrenal fatigue was definitely an issue for me as well.

What I'm trying to say is that there is hope. I was able to stay off any drugs, and strangely also my anxiety seems to have disappeared. Aside from that one weird episode I don't think I have depression. I have a friend who has depression and I have a lot of the same symptoms (irritability, extreme tiredness, fatigue, joint pain). But I don't feel depressed. I think lyme just has the same symptoms. The only way I got to feeling any better was by treating the lyme. And my cognitive function is almost back to normal. Regardless of what anyone says I think the brain does heal-it just takes a while.

I think hobbies definitely are good for healing the brain (if you have the time).

And finally it might be best to avoid physiologists and neurologists unless you can find someone who is really helpful. It can be helpful if they take a MRI or something so you can actually see the problem in your brain. I would look anyone up before hand on the internet to see what they do, and what other peoples experiences have been. It all depends on how sick you are, but some doctors just aren't worth the money and the extra stress.

To help with depression/exhaustion you could take eleuthero (siberian ginseng) or licorice, but they can make your blood pressure go high and disrupt your sleep sometimes. Cat's claw and andrographis and teasel have helped with my mood. Andrographis can possibly cause an allergic reaction, but if you aren't allergic it can really help with lyme symptoms. I hope all this is helpful.

I hope you feel better!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32577
   Posted 12/30/2017 10:53 PM (GMT -6)   
NoTime4Lyme - your brain shrank? Could you elaborate ?
It actually got smaller ? Was this seen on a regular MRI?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 530
   Posted 12/31/2017 5:51 AM (GMT -6)   
My Lyme journey started with Effexor withdrawal. It was brutal. 9 months of hell from that drug. It’s been over a year since I touched it, and life is so so so so much better without it, EVEN WITH LYME. My advice is NEVER touch Effexor again.

I got off it with help from a Naturopath. I don’t have time to give you the details right now, maybe if you search the forum you’ll find my story somewhere, or I can get back to you later.

I had to fix my adrenals, thyroid, sex hormones, and supplement with fish oil, Vitamin D, vitamin B, GABA and Tyrosine (all in supervised doses and good quality practitioner brands). It’s been a long journey but as I continue to treat Lyme and Co, my brain fog is leaving, my ambition is returning, and for the first time in 20 years I do not use the word “depression “ to describe my medical condition.

I remember being worried that my brain was ruined permanently by 15 years of Effexor. It was not. Everything I lost came back, including real, pure, non-bipolar JOY. Look up the latest studies in rebuilding your neurons. It’s much more promising than the conventional medical advice you will find that says you can’t.

I highly highly highly recommend finding a Naturopath. Mine saved my life. While searching or until you can afford it, start eating as healthy a diet as you can. The Whole 30 is a good one, though extreme. Cut out one thing at a time- most importantly sugar and processed food.

Supplements need to be high quality- drug store supps are filler and useless junk most of the time. Fish oil doesn’t work for me... because the fish oil in the store is only 10% actual content that I need. But real stuff is expensive, so going it alone could waste money. A professional can guide you through that.

I’ll be back later. Good luck
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32577
   Posted 12/31/2017 11:41 AM (GMT -6)   
BabsBunny said...
My Lyme journey started with Effexor withdrawal. It was brutal. 9 months of hell from that drug. It’s been over a year since I touched it, and life is so so so so much better without it, EVEN WITH LYME. My advice is NEVER touch Effexor again.

I got off it with help from a Naturopath. I don’t have time to give you the details right now, maybe if you search the forum you’ll find my story somewhere, or I can get back to you later.



Weaning off it slowly, properly is key to success. So glad you succeeded, BabsBunny!

My elderly father was taken off it in 3 days (the geriatric psychiatrist said that he 'weaned' him off).
They also got him dependent on Ativan and Zopiclone (which I found out should never be given to elderly)

He never fully recovered....

So, it's not something to take lightly...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 530
   Posted 12/31/2017 12:30 PM (GMT -6)   
Girlie said...


Weaning off it slowly, properly is key to success. So glad you succeeded, BabsBunny!

My elderly father was taken off it in 3 days (the geriatric psychiatrist said that he 'weaned' him off).
They also got him dependent on Ativan and Zopiclone (which I found out should never be given to elderly)

He never fully recovered....

So, it's not something to take lightly...


Yeah, the doctors say it should take about 2 weeks to taper off 225 mg. That’s too soon.. I did nine months because I was trying to maintain a job. Maybe that wasn’t a good idea to drag it out, but doing it quicker was suicide so... who knows. That drug had me feeling good for months or years at a time but always stopped working, and my dose got higher and higher. My sleep suffered, my personality suffered, life as a newlywed suffered, it was just WRONG. NP says the drug actually CAUSES chemical imbalances and my adrenals were shot because of it.

Nutrition is the way to go. My Lyme docs always want me to take more antidepressants (I’m still on Wellbutrin, they refuse to take me off bc of Lyme depression) to get through the 3 B’s, but I absolutely refuse.

I used to take Ativan for emergencies but once off Effexor, that turned me into a zombie.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 530
   Posted 12/31/2017 12:59 PM (GMT -6)   
Mergirl, could you clarify why you think you have neuro Lyme? All these symptoms plus depression can be regular Lyme. I guess if your LLMD sent you to a neurologist to check, there’s a possibility but maybe they’re just being cautious and ruling out other causes?
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/31/2017 2:35 PM (GMT -6)   
astroman said...
"I just checked the lab slip and the tests he wants me to do are Thyroid Peroxidase and Thyroglobulin Antibodies. Are those the ones you are referring to?"

- yes, perfect. These two tests have a limit (not a range) which should be on the report. And the limit can be different based on the test machine calibration/brand testing your blood.

Its amazing how "digital optical comparitors" can count stuff in your blood with the help of other additives mixed with it. I've been to a live demonstration. The one I saw was about the size of a household refrigerator on its side.

My couch time today is spent relaxing or napping vs lethargically staring at the ceiling while feeling my heart flutter away. That really sucked.



Thanks for confirming that for me! Interested to see how those two turn out now.

My heart was going pretty crazy early this morning. Comes and goes. I hate that feeling! The cardio I saw so far hasn't been much more help than that neuro but at least she's going to do an echo and I think maybe another test. She said the ekg was fine but mine have always been through all this. So who knows.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32577
   Posted 12/31/2017 3:03 PM (GMT -6)   
BabsBunny said...
Mergirl, could you clarify why you think you have neuro Lyme? All these symptoms plus depression can be regular Lyme. I guess if your LLMD sent you to a neurologist to check, there’s a possibility but maybe they’re just being cautious and ruling out other causes?


I was told by my LLND that neurolyme is when it's entered the CNS.

If it's affecting your nervous system/brain - then its neurolyme.

Sometimes it happens early on with LD.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/31/2017 3:20 PM (GMT -6)   
Notime4lyme said...
Hi Mergirl,

I kind of know how you feel. I have a family history of depression and weird cognitive issues, and I had a lot of anxiety that really got worse with the lyme. I had sort of a weird episode a few years ago where my brain shrank and my anxiety went through the roof and I got horribly sick. I definitely had some brain damage. Not sure what really caused it, but I'm sure lyme and company had something to do with it. Also. the treatment I was on was not helping or making me worse.

I was put on Xprexa for I'm not sure what and some other stuff, and I started to get horribly depressed. I was on it for maybe four or five months and the depression lasted about two months after I stopped it. I had only gotten depressed about twice before that, and it only lasted for a couple weeks.

Also just my slow brain was depressing. I couldn't even follow a recipe. I know exactly that "detached" feeling. How long have you been off meds? Maybe it is still withdrawals. It took me a long time to get rid of that weird feeling. I know once you are on depression medications it can be really hard to get off. I know someone who got really sick when they tried to get off. My advice would be since you are off meds and not really sick, you should stay off of them, and do something to treat the lyme disease. Going on a good diet and doing things to help heal your brain helps too. Everyone is different and that is just my personal experience.

I think adrenal fatigue was definitely an issue for me as well.

What I'm trying to say is that there is hope. I was able to stay off any drugs, and strangely also my anxiety seems to have disappeared. Aside from that one weird episode I don't think I have depression. I have a friend who has depression and I have a lot of the same symptoms (irritability, extreme tiredness, fatigue, joint pain). But I don't feel depressed. I think lyme just has the same symptoms. The only way I got to feeling any better was by treating the lyme. And my cognitive function is almost back to normal. Regardless of what anyone says I think the brain does heal-it just takes a while.

I think hobbies definitely are good for healing the brain (if you have the time).

And finally it might be best to avoid physiologists and neurologists unless you can find someone who is really helpful. It can be helpful if they take a MRI or something so you can actually see the problem in your brain. I would look anyone up before hand on the internet to see what they do, and what other peoples experiences have been. It all depends on how sick you are, but some doctors just aren't worth the money and the extra stress.

To help with depression/exhaustion you could take eleuthero (siberian ginseng) or licorice, but they can make your blood pressure go high and disrupt your sleep sometimes. Cat's claw and andrographis and teasel have helped with my mood. Andrographis can possibly cause an allergic reaction, but if you aren't allergic it can really help with lyme symptoms. I hope all this is helpful.

I hope you feel better!



Thanks so much Notime. Great post and I appreciate you sharing your experience with me.

My psych at the time stopped the Effexor I believe in August of 2016. So been off just about 15 months. I was also taking VERY strong pain medicine at the time. From about spring 2012, to June of this year. ALOT has happened in the last couple of years that could have influenced my cognitive decline. I'm sure like others, my history is very very involved and complicated. I was drugged every which way but up. So hard to know exactly.

I have heard it can take a long time with effexor. First off, I know now that I was tapered wayyyy to quickly. I had no idea I had lyme, well, I did at certain times over the years with all the chronic pain I had going on but was always told I didn't have it. I think she had me tapered off within a couple of weeks if I'm remembering correctly. Again, no idea at the time that it was way too fast. She told me that Pristique is a very similar drug and that if I started as I got off the effexor, I would be ok.

I do remember getting sick and thinking well, this is just withdrawals. If my memory serves me ( And it doesn't much lately!) I know by the end of October I was off effexor and on Pristique. I remember telling my sister at the time, that something is very wrong with my brain. I told her that it felt completely "fried". And it did. Still does for the most part but in a different way I think. Everything was always explained away.

I stopped the pristique I think because it just seemed to make that feeling worse. During this time period is when my brain fog became more constant and intense and I was noticing more and more memory loss. I started feeling and acting like a zombie then. Spending days just staring out at the ceiling or listening to tv with my eyes closed because they hurt so much. The year prior , I sold my car in order to pay for health insurance because I knew something was wrong and saw every single doc around, for mental and physical issues. But mainly had to stop driving because my eyes and neck always hurt too much. Now this year I had to stop because of the constant brain fog and disorientation.

Then there was prozac, cymbalta, savella, all which made my brain symptoms worse and worse. Then, thats when I gave up on them all together. Then earlier this year was 2 weeks of Prednisone that really pushed me over the edge, then realizd over the summer I had been sleeping next to a moldy air conditioner for close to a year. I'm sure all of these things are a part of what I'm dealing with now.

I do feel I have brain damage. I could be wrong and hope to god that I am. I just know that October 2016 was really the last time I felt anything like myself at all. And I was dealing with absolute crippling pain that kept me in dark rooms for days. But on "good" days, I still kept up my appearance, took photos of myself, did some things that I always had in interest in and enjoyed.

As of earlier this year, that all went away. Now, I'm not sure who I am. Just a constant numbness and my brain is so so slow I can't really do much with it. I probably couldn't follow recipes now either. I can't even handle grocery shopping without assistance. I used to bake. Always loved to bake. That was one of my hobbies. Now, I couldn't even fathom doing it. The last time I even mentioned wanting to was in that fall of 2016. I don't think I could by that point, but motivation was at least there.

Thanks again for your advice. Maybe what I said here will help complete the picture a little more. I am comforted by the fact that you said your cognition and brain function came back. I do agree that the brain can heal itself. Yesterday I tried playing some brain games. Even a couple years ago they were so easy for me, I had to stop because I kept getting so frustrated with myself. I'm lucky a family member took me in because I don't think I could have taken care of myself at all in my current state. Though I am dying to be independent again so very badly.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2107
   Posted 12/31/2017 3:28 PM (GMT -6)   
Prednisone is bad for people with Lyme. I wonder if this is why you had gotten worse after taking it.

It suppresses the immune system.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/1/2018 8:23 AM (GMT -6)   
BabsBunny said...
My Lyme journey started with Effexor withdrawal. It was brutal. 9 months of hell from that drug. It’s been over a year since I touched it, and life is so so so so much better without it, EVEN WITH LYME. My advice is NEVER touch Effexor again.

I got off it with help from a Naturopath. I don’t have time to give you the details right now, maybe if you search the forum you’ll find my story somewhere, or I can get back to you later.

I had to fix my adrenals, thyroid, sex hormones, and supplement with fish oil, Vitamin D, vitamin B, GABA and Tyrosine (all in supervised doses and good quality practitioner brands). It’s been a long journey but as I continue to treat Lyme and Co, my brain fog is leaving, my ambition is returning, and for the first time in 20 years I do not use the word “depression “ to describe my medical condition.

I remember being worried that my brain was ruined permanently by 15 years of Effexor. It was not. Everything I lost came back, including real, pure, non-bipolar JOY. Look up the latest studies in rebuilding your neurons. It’s much more promising than the conventional medical advice you will find that says you can’t.

I highly highly highly recommend finding a Naturopath. Mine saved my life. While searching or until you can afford it, start eating as healthy a diet as you can. The Whole 30 is a good one, though extreme. Cut out one thing at a time- most importantly sugar and processed food.

Supplements need to be high quality- drug store supps are filler and useless junk most of the time. Fish oil doesn’t work for me... because the fish oil in the store is only 10% actual content that I need. But real stuff is expensive, so going it alone could waste money. A professional can guide you through that.

I’ll be back later. Good luck



Thanks Babs,


I think you're right. I've pretty much decided not to go back on the Effexor again. I think when I'm at my lowest, like I have been, it's easy to get tempted into thinking that something like that might "fix" me again. I just feel like I'm never going to be myself again, never feel emotions or my brain will never work again. It's a dark scary place I've been in. I have so much to do and catch up on. I've been in extreme debt for years because I could not work and the medical bills piled up all while getting wrong diagnosis and treatment.

I would LOVE to see a naturopath. I believe I have some of the same issues. Adrenals, other toxins, hormones, etc. Unfortunately, I'm living disability check to disability check right now. Barely able to buy supplements and herbs and medications. It's all so frustrating and continues my depression and hopelessness. I know there's help out there and lots to try, but I cannot access it. I can barely even buy food for myself.

But if my circumstances could or would somehow change, not sure how unless I get well enough to hold a job again. It's definitely something at the top of my list for sure.

I think for now, I'll keep researching and trying different things for anxiety and depression naturally. I still really don't know what I'm doing with my treatment protocol. Just been playing it by ear the last few months.

Thanks again.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/1/2018 8:32 AM (GMT -6)   
BabsBunny said...
Girlie said...


Weaning off it slowly, properly is key to success. So glad you succeeded, BabsBunny!

My elderly father was taken off it in 3 days (the geriatric psychiatrist said that he 'weaned' him off).
They also got him dependent on Ativan and Zopiclone (which I found out should never be given to elderly)

He never fully recovered....

So, it's not something to take lightly...


Yeah, the doctors say it should take about 2 weeks to taper off 225 mg. That’s too soon.. I did nine months because I was trying to maintain a job. Maybe that wasn’t a good idea to drag it out, but doing it quicker was suicide so... who knows. That drug had me feeling good for months or years at a time but always stopped working, and my dose got higher and higher. My sleep suffered, my personality suffered, life as a newlywed suffered, it was just WRONG. NP says the drug actually CAUSES chemical imbalances and my adrenals were shot because of it.

Nutrition is the way to go. My Lyme docs always want me to take more antidepressants (I’m still on Wellbutrin, they refuse to take me off bc of Lyme depression) to get through the 3 B’s, but I absolutely refuse.

I used to take Ativan for emergencies but once off Effexor, that turned me into a zombie.



That's interesting, babs. For me, I didn't begin to really feel like a zombie until after I was off the effexor and on to pristique then something else I thing. I had intense episodes of brain fog. But still kind of felt myself, connected to this world and myself in many ways. I remember the presidential election was going on then and I was interested in what was going on, watched the debates, voted and felt very strongly about what was happening.

That was the last time I felt that way about anything. Ever since it's just been total numbness in every aspect. I can't think clearly, remember things and just pretty much forgot what it feels like to be me. Even that reduced version of me. If the same things were going on around me now, I probably wouldn't care or feel strongly one way or another at all. I don't know what happened exactly. But fall 2016 is the last time I saw myself. Even though the self I was was always in extreme pain taking pain meds like candy. Then again, I didn't know I had chronic Lyme then but a bunch of other things instead.

I just hope whatever broke me and my brain. I can still recover from somehow. Not even my Lyme doc seems to understand any of this which scares me.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/1/2018 8:47 AM (GMT -6)   
BabsBunny said...
Mergirl, could you clarify why you think you have neuro Lyme? All these symptoms plus depression can be regular Lyme. I guess if your LLMD sent you to a neurologist to check, there’s a possibility but maybe they’re just being cautious and ruling out other causes?



Hi Babs,

I'll try to clarify. Of course, I don't know for sure I have neuro lyme. But I believe so. I was originally diagnosed in 2005 at 26 years old. Prior to and after my treatment, I always suffered from pretty severe headaches that over the years turned into tension headaches and migraines and 6 years ago I was diagnosed with neuro thoracic outlet syndrome.

I don't know if Lyme is connected to any of that. The headaches and arm / shoulder/ head pain on one side started in my mid teens. Did I have lyme back then? Possibly. But 2005 is when I came down with acute menengitis type symptoms and was clinically diagnosed by my pcp ( pretty amazing back in 2005. I had no rash, no found tick, and a negative western blot. Nothing that would indicate lyme otherwise)

I only know that after I had the surgery for my TOS in 2011, my physical decline started to rapidly increase. Jaw pain, TMJ, still constant head and neck pain but reduced frequency, knee pain, muscle pain, etc.

I didn't feel like things really moved into my brain until the last year and a half when i started to complain of it feeling fried, the fog, couldn't think , organize or remember anything. Now the last 7 or 8 months it's like a constant numbness. Along with blurred vision, tinnitus, etc. When I herx, I get the stabbing pains in my eyes and head now.

So maybe I don't really know the difference between reg lyme and chronic lyme? I assume it's neuro because of my history with cranial pain, trigeminal neuralgia, jaw pain, brain fog, etc. Now mild demntia like symptoms, loss of executive function, whatever you want to call it. But it's one of my most troubling symptoms besides my heart stuff.

It would be hard for me to believe that in all this time, all this years, that it didn't make it's way into my brain by now. Especially after taking prednisone. There was a switch from bad to worse both during the effexor poop out and then really after the prednisone which I barely survived. Not exaggerating there.

I really wish my brain wasn't effected as much as it is. I don't even want to talk to anyone lately (other then this forum or friends with chronic lyme) Doing things people take for granted everyday like going through mail, reading it, sorting, reading something and remembering what I just read, etc. It's a total nightmare.

Thanks again Babs. I really appreciate your feedback and questions. I'm really trying so hard to sort all of this out on my own. That's all I have right now.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/1/2018 8:53 AM (GMT -6)   
goshawk said...
Prednisone is bad for people with Lyme. I wonder if this is why you had gotten worse after taking it.

It suppresses the immune system.



Oops. sorry. I think I hit ignore something by accident when trying to respond. If so, please disregard!


I know Go, one of my biggest regrets was taking that 2 week course of steriods. If I had only known back then what I know now. I'm also angry at the orthopedist who gave it to me. These docs really do not have lyme on their minds at all. I kept going to them with pain and swelling in one knee, then the other. Then both at the same time along with pain in other parts of my body.

Instead of getting to the bottom or even asking about it. And to be fair, it wasn't on my mind either. All part of "fibro" I was told. Now I'm scared the damage from that is permanent. I can't go back and untake them unfortunately. All I can do now is try to find some way to heal from all of this if possible. I know now though never to touch them again and have begun putting steriod allergy on my intake forms for docs.

Thanks Go.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32577
   Posted 1/1/2018 12:34 PM (GMT -6)   
Mergirl said...



Oops. sorry. I think I hit ignore something by accident when trying to respond. If so, please disregard!



If you ignored someone you won't see their posts anymore. To correct this - go to "My Profile " and 'edit ignored users'
It will list who you've ignored and you can remove it.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/1/2018 1:50 PM (GMT -6)   
Done! Thank you!

I had no idea what I did, just saw the word ignore come up. Sorry again goshawk!

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 273
   Posted 1/2/2018 1:24 PM (GMT -6)   
Feeling numb is really tough. Have you been on antibiotics for lyme? I think it was doxy and azithromycin that helped with my brain fog slightly.

I think doing things that don't require a lot of brainpower are good to start with. I've heard that even things that you wouldn't think of, like singing or walking are good for your brain. I like drawing, but even that takes a lot of brain power. I don't have the energy to draw a lot of the time.

Going to a naturopath is a great idea. Some of them are very affordable and even take insurance. I think going to a lyme literate one is really important. The first one I went to just loaded me up with a million (expensive) supplements and vitamins that actually made me feel worse. I don't tolerate vitamins very well. Now I am going to one that uses mostly Buhner's herbs, and am feeling a lot better.
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