i'm so sorry to post this depressing question. i am trying to be positive but i am failing. i'm so worried i have permanent brain damage. i have had neuro-psych symptoms since age 15 (i'm almost 28 now).
i don't understand what is happening to me. i had one good week recently where i was able to read a lot. that was on the tinidazole (my first round of tinidazole).
my doctor had me come off it because i was having days of a lot of anger, depression, suicidal thoughts and an "itchy" feeling in my brain. apparently these are side-effects. i wasn't meant to be on the tinidazole for 6 weeks straight; there was miscommunication.
anyway, i am so worried about the future. i feel so depressed and scared and i feel like my life is over.
i have been off tinidazole a week now and i still have vomiting. i have depression too. i feel very hopeless. i am worried i have permanent brain damage. but if it was damage why would i have had a good week??
my brain started getting foggy on the tinidazole so i don't know what to think. maybe it will take a while for me to feel better off the tinidazole?
my past treatments were: bicillin shots for almost a year and babesia treatment from nov. 2006- june 2007.
i was diagnosed in november 2006. i am currently taking plaquenil, betablockers, provigil, armour thyroid, replacement dose cortisol and recently started supplementing with progesterone because my levels are low.
my neuropsych symptoms have been mania, depression, severe anxiety, (is insomnia a neuropsych symptom? if so then i would count that as i've had insomnia since around 1995).
i am scheduled to have my first spect scan next month.
i am so worried and burned out! i am so sick of being so sick as i'm sure you all are. i have been totally disabled since 2004.
so i guess my question is -- can any of you relate? i've only had one good week out of the past 10 months of treatment. the rest has been pure misery and now continues to be misery. what is up with having only one good week and why didn't it last and how can i get back to feeling better?
~catwoman
Posted by Lymetoo (Member # 743) on :
I doubt you have brain damage ... just feel like it! Tinidazole and/or flagyl can really do a number on us. FLAT OUT rough stuff....but so necessary!!
You're going to make it....just keep on going! The only way out is through.
Posted by Cobweb (Member # 10053) on :
Sorry, I'm not the one to ask! Posted by CatWoman (Member # 10900) on :
Thanks guys.
I am not on any antibiotics for Lyme now. As far as I know all my co-infections have been successfully treated. My babesia symptoms are gone and my bartonella rash is gone.
I am still throwing up today.
As for the insomnia yeah I have had it for a long time. It was brutal on Mepron. My last sleep lab showed 56 awakenings in 2.5 hours of sleep. I have had chronic insomnia since around 1995 with periods of awful debilitating insomnia (had to drop out of university several times) and periods of less bad insomnia - but it's always present.
Right now I wake up every half hour to one hour.
My doctor told me to stay off the tinidazole until I see him mid-October. So no antibiotics until then (not sure what his plan will be for me then). I really don't know what he will suggest then.
Yeah I am on a lot of drugs. I would like to get off the betablocker. But the 3 hormones I know I can't get off because my hormones are so messed up.
how long did you guys take tinidazole and/or flagyl for?
~catwoman
Posted by CatWoman (Member # 10900) on :
hey cave,
yep i've never had a positive for co-infection either but i only did one series of co-infections test (not through igenex). i did come back positive for a past infection of rocky mountain spotted fever. my co-infections were diagnosed based on my symptoms.
the symptoms i still have are insomnia, bladder irritation, vision problems, balance problems, fatigue, mood issues. so yeah pretty much all the symptoms i started with.
i did have 2 weeks where my brain was clearer and my concentration and energy were much improved.
~catwoman
Posted by artraveler (Member # 12764) on :
Hi Cat Woman, I really feel for you! I'm so sorry you are having such difficulties right now. I'm only in my 2nd month of treatment, but my LLMD told me that it was going to be a long road, & bumpy too!! I have a lot of nuero issues myself and have wondered about just how permanent this might be. In my readings however, I have seen reason to be optimistic! Things like our memory will remain flawed when we think back on this time, but most all other brain functions I believe will return, for the most part. I, of course, have NO medical training, I'm just someone else trying to understand & cope with what life has thrown at me.
Posted by CaliforniaLyme (Member # 7136) on :
Hey KIttyCat*)!!! (I have 6- cat brats I mean*)!
I got progressively worse despite one year of orals- I need IV Rocephin and the first 6 months I had NO CHANGE_ then last 3 months were heavenly including this anxiety I had all my life vanished and has never come back- I thought it was PART of me- I have had others tell me same tihng with IV Rocephin- changed WHO they ARE-
locally we have had people on much longer than me- we had one woman sick total 9 years go into full remission on TWO YEARS of IV Rocephin- at one year she called me and she had no change yet- told me, "I will never be well, Sarah." at 18 months she was almost well. 2 years complete remission and has stayed in complete ever since and she was BAD, BAD bAD BAD!!! She was in agony and debilitated!!!!!!!!!!!!!!!!!!!!!
and she loves life today!!! Beach volleyball*)!
EVERYONE I have seen stick with abx has gotten substantially better like me or full remission!!!
DOn't kill yourself!!! Sit on your hands to stop yourself if you need to- I never ever thought life would be worth living agian and I had terrible encephalopathy where I no longer could remember my childs name!! MY BABY!!!! And I am doing great*)!!!!!!!!!!!!!
I hope your doctor considers IV Rocephin because you sound very neuropsych as you said!!!
Rocpehin got rid of 2 things I thought were ME that pre-existed before my acute LYme and make me think I was infected most of my life- anxiety- and also a lifelong fear of heights!!!!
Hang in there*)!)*!! Sincerely, Sarah
Posted by kelmo (Member # 8797) on :
You may be hitting something in the brain and the toxins tend to hang out there and mess up your thinking.
Not a doctor....but I would drink lots of water, with lemon and olive oil (There should be a recipe in the Newbies link).
Stay with the progesterone (bio-identical), it is great for nerve endings and the brain. Progesterone is stored in the brain, did you know that?
Give your body a rest, and like Cave said, you have probably have not been quite successfully treated.
Remember, if things get too bad, if you are suicidal, it's okay to take medication for that.
My daughter started getting sick around 14, her symptoms were a lot like yours. She started treatment at 17 and is now 19.
She is now taking a on-campus college class, and two online classes. This is a HUGE improvement. A couple of years ago, she couldn't remember what someone told her a few minutes before.
There is hope, don't throw in the towel.
Kelmo
Posted by CatWoman (Member # 10900) on :
You guys are all very kind for replying. Yep I'm definitely not going to kill myself. I have had suicidal thoughts along with the depression and agitation. Needless to say it's not a good combination. I don't want to die I want to get better. That is what I have wanted all along.
I see my psychiatrist on Tuesday and my lyme doctor next month. I really don't know what he is going to suggest in terms of treatment. That tinidazole was brutal! Maybe if I have to go back on it I can do one week on and one week off or something like that.
I am hoping the progesterone will help me. I didn't realize progesterone is stored in the brain. I knew that progesterone is in part produced by the adrenals and my adrenals are low (or were really low at one point) so it makes sense that my progesterone might be low.
How do you guys tolerate the antibiotic treatment? It's really taken a toll on my body. I do take lots of probiotics. I could be better with my diet that's true. Overall though I wasn't too bad with my diet for the most part while I was on antibiotics. I took a whole bunch of antibiotics even before I started Lyme treatment because I had bladder infections that required long courses of antibiotics. I am really sick of antibiotics but I guess everyone is.
Well yesterday was better for me thank goodness! The other day I was so agitated and depressed I ended up just taking a sedative. I truly don't know how to cope with the agitation and depression combination.
Thanks for responding. I think I am feeling pretty down about this all. I am so sick of it (i know you guys are sick of feeling sick too).
~catwoman
Posted by klutzo (Member # 5701) on :
I do have permanent brain damage, ascertained by extensive neuropsych testing. It is in the severe range, with my brain operating at 45% of normal, and getting worse since the tests were done. My test results were so bad, they changed my disability revue from every 3 yrs. to every 10 yrs.
BUT, I have not had any ABX, due to allergy, and I have been sick for almost 22 years, only learning it was Lyme 4 years ago. Before that, I was given lots of cortisone for the 2 diseases I was misdiagnosed with at first, so I was actually making it worse.
From what I've read here, people who get ABX usually will have these neuro issues resolve, though they often tend to be the last symptoms to resolve, so keep at it.
I understand the depression. I know this is probably going to kill me, and I keep having more and more problems from it,so I can't even enjoy the time I have left. My suffering seems pointless.
However, I must believe there must be a purpose behind what I am going through....what we all go through on earth. Otherwise, everyone, healthy or sick, should just give up and blow their brains out, because it all means nothing.
I hope you have somethng like that to hold on to. Plus, you ARE getting treatment, so there is a light at the end of the tunnel for you. Try not to despair. This disease will teach you patience, that's for sure.
wishing you peacefulness, Klutzo
Posted by tailz (Member # 10014) on :
I would hold off on the SPECT scan. I was not doing too well before I had mine, and I about lost my mind by the time it was finished.
I learned not too long after the SPECT that electromagnetic fields were my problem - cell phones, wireless, computers, antennas, etc..., and the 45-minute SPECT scan I had about fried my brain.
You are never going to believe me. Most people here think I'm a nut. Read 'Cross Currents' by Dr. Robert Becker. I cannot recommend this book enough to people with SEVERE psych symptoms. All the symptoms you describe will suddenly make sense.
Then try to find a way to live in this crazy world with all this electromagnetic pollution waiting for scientists and researchers to 'discover' that all disease - Lyme, depression, anxiety, mania, bipolar, ADHD - is really caused by all these bugs and toxins crossing the blood-brain barrier and interfering with hormones due to manmade electromagnetic fields, when the industry that profits from all this technology refuses to fund such studies.
You won't regret reading this book. It is only second to the Bible for me at this point. Good luck to you.
Posted by tailz (Member # 10014) on :
By the way, if you have a bad day, take a few baking soda baths in the hottest water you can tolerate. Stay there until you finish sweating. The anger is toxins that cannot get the signal to leave your body due to artificial electromagnetic fields.
Posted by w0tm (Member # 13104) on :
You DO have many friends on-line who DO care for you so always keep that in mind! For every fellow Lyme sufferer who posts (like me and others you've read) there are 50 more reading and mentally thinking "I've been there myself, I'm there now or God, I hope I never regress to where this terrible illness affects my mind like it has this poor lady". They (we) all care about you whether they (we) write you or not.
Why did you have "one good week"? I am NOT a doctor but it sounds like your body happened to pass through the wonderful "spot" where all your body chemicals (mind and body) were "in balance". Sometimes people truly do have an imbalance that requires a chemical (drug) to make up for something that is "too much" or "not enough" but at least think about the possibility that your body was temporarily "out of balance" some time in the past and a well-meaning doctor "fixed that" with a compensating drug.
But that imbalance was only temporary and, when your body went back into balance, that darn extra drug was still there! Then another doctor either took you off of that now unneeded drug and your life returned to normal or treated the symptom with yet another drug and you dropped into the "Hell" you describe where almost countless drugs (you sometimes think) are countering to counter to counter the drug that is countering something else. It is possible to be perfectly sound of mind and body but be so screwed up with drugs that you're sick for only one reason - way too many drugs you don't need!
HOWEVER, getting off of them (if you truly don't need some or all of them) can be life-threatening if not done with the help of a health-care professional who specializes in such matters.
You wrote you were "diagnosed" and that you've received treatment for babesia. Exactly what have you been diagnosed as having? Lyme? Other EB-V illnesses? Anything else biological? It sounds like you've been prescribed many drugs treating SYMPTOMS. Doing so is not inherently wrong or ill advised but learning the core biological illnesses that "started all this" is important.
Since many drugs can CAUSE symptoms, it can happen where one doctor prescribes a drug to treat a symptom caused by a drug treating another symptom that was prescribed by another doctor. Even drugs that, it turns out, were never needed to begin with. That exact thing happened to me. I spent three days in intensive care due to an adverse drug reaction of a drug a particular doctor knew little about and didn't take the time to check what other drugs it conflicted with. The medical ethic of "first, do no harm" is not always observed as doctor "cut corners" as they rush through their busy days.
Keep writing! Just writing is VERY therapeutic. Thus far, I've been fortunate enough to not have Lyme affect my mind other than this $#*% "brain fog" everyone with Lyme experiences. Also called "Alzheimer's Lite" that comes and goes.
Suicide. A terrible word but EVERYONE who suffers from a long-term chronic illness (including mental) has such thoughts from time to time. You would NOT be normal if you didn't! But these are brief, passing thoughts. Don't worry unless, or until, it ever becomes constant (for more than a day) or you do anything that moves you closer (you buy something, write a note, etc.). That's what "911" is for. But you do not want "suicidal tendencies" to be added to your "permanent record" just as "potential drug addict" is something that can cause you permanent problems on those same records. You'll never be able to get rid of such words connected to your name. They can make obtaining various forms of care more difficult for the rest of your life. So your "thoughts" are very normal. We've all had them. Occasional and fleeting. Anything beyond that then don't hesitate to ask for help.
I've read so often on this forum of various mental difficulties and adverse mental reactions connected with Lyme. I have to wonder if some reports are just coincidental and/or if some are added to the list of illnesses the person is already burdened with by a well-meaning doctor treating a biological symptom (to, say, Lyme) with a mind altering drug. Can such drugs do more harm than good? Since most drugs have at least some unpredicatable results, I have to wonder.
Perhaps the suggestion of "unwinding" from the many medications you are on and "giving your body a rest" is a good one. At least one worth considering. Having said that and agreeing with the other person writing that, I would add "unwinding" from any "mind altering" drug or drugs should be done only under the close supervision and care of a doctor and one specializing in such matters (your dentist is not a good choice). Getting off of almost any serious drug "cold turkey" without the help of a professional is not wise.
Not to repeat myself but "keep writing"! Many will be reading and some will respond. I too feel so sorry for you that your Lyme-related illness has affected your mind. No two people with Lyme are affected the same way. For me, it has been extreme body pain as the Lyme has caused my immune system to turn on my body stressing and destroying nerve receptors as it tries in vain to destroy the Lyme in my body. The constant physical pain is extreme but at least it's not yet affected my mind. I can only hope it never does. Except for, as I say, the "brain fog" we all experience. If someone doesn't report "brain fog" as a symptom, I am suspect of their having Lyme at all. Some other illness for sure but probably not Lyme. Lyme "brain fog" is probably a 100% symptom of all who suffer from Lyme.
Good luck! You have hundreds, if not thousands, reading your comments. And we've ALL been many of the "places" you are in right now.
Take care,
Posted by CatWoman (Member # 10900) on :
klutzo, tailz, w0tm- thanks for answering. i'll check out those books thanks.
w0tm,
ah yes i am familiar with how medical diagnoses tend to follow you around. i was diagnosed with bipolar and once briefly hospitalized for a manic episode. on certain forms you have to check off if you've ever been hospitalized. yikes - seems that will follow me around everywhere.
i see what you're saying about being on so many drugs. before the lyme diagnosis i was treated (quite unsucessfully) for bipolar disorder and was on multiple psych meds (i think 4). it was a mess being on them and a mess coming off them.
nothing was different during that one good week i had. i was on all the same drugs. the medications i'm on have been prescribed to me by my lyme doctor (the provigil is supposed to help with my sleep by keeping me alert enough during the day that i am able to fall asleep at night). i was sleeping a bit better for a while but even then i was still waking up a lot (usually at least 4 times through the night).
i agree that i am on a lot of medication. i am going to see what my doctor says about it the next time i see him. i think i will be on the hormone treatment for a while yet (thyroid and replacement cortisol for sure).
i was diagnosed by my lyme doctor back in nov. 2006. he spent several hours talking with me and reviewing my history, symptoms, test results. i had a positive (1:128) bowen test and an igenex western blot that showed numerous suspicious lyme disease bands. there was only one or two positive bands and a few indeterminate. i had a co-infection test (not igenex) that showed past RMSF infection.
no other than lyme and a mycoplasma infection i've never been diagnosed with any other biological condition. no EB-Virus or anything like that.
thanks for writing back.
~catwoman
Posted by CatWoman (Member # 10900) on :
i am off the plaquenil and have to go see an optometrist regarding my vision. and i'm almost off the provigil.
i am still having vomiting, depression and periods of crying hysterically and unable to stop.
~catwoman
Posted by Cass A (Member # 11134) on :
Dear Catwoman,
Psych drugs can REALLY mess things up! Most of them now have "black box" warnings due to side effects like suicidal thoughts, excessive weight gain, diabetes, violence, heart problems, etc.
Psychiatric labels are awful!! They're not diagnosing you with real diseases, but collections of symptoms--they VOTE the names of them into existence at APA conventions. And, these labels can color how you're treated for the rest of your life!!
For sleep, I like B1 if I keep thinking about things and can't stop.
Best,
Cass A
Posted by CatWoman (Member # 10900) on :
i am so sick. agitated and vomiting and so depressed.
~catwoman
Posted by CaliforniaLyme (Member # 7136) on :
I wonder if the tindazole triggered the depression. Flagyl and tinda can both trigger deperssion and/or suicidality in Lyme patients, has come up over & over again with local people. It scares me because the suicidality and depression are very real. I hope you are not suicidal now even if very depressed!!! Yes, it does not always go away right after coming off of them-
I had horrible vomiting fits for a couple of years, I hated it, hated it HATED it. My skin would turn sweatty and then clammy and I would have dry heaves if I had nothing in my stomach, just AWFUL. I was very depressed for a couple of years because of my physical state of being. I was no longer who I had thought of as me because I was just this creature dealing with the pain and that process of filtering life through pain was so overwhelming and constant it was emcompassed me. I hope you hang in there.
There were many times I htought of offing myself when it was bad but I had a little kid and I also had my one true friend, my cat Christian Eugene. He is 17 years old now.
I hope you have a cat. He was my only friend who was really there for me when I was sick. The others fell away. When I got sick i had been jogging 3 times a week with these 2 women- not ONCE did they come to visit me when I couldn't get around. Not once. When I could no longer do the active life with them, they were not there.
I did have friends who made me food and visited when I was bad, but even they in the long haul did not understand how it was to be engaged in a concversation while my body was revolting in pain every darn second- they had NO CLUE what it was like- NONE_ and no matter how they tried to have compassion they did not understand the experience of chronic pain at the most basic level-
When is your spect scan? If you have lesions maybe you will be put on IV Rocephin!!! When I was on IV Rocephin my brain got the cleanest it has ever been and I was happier than I have ever been in my life!!!
Wow, thinking back, Flagyl made me vomit too- I wonder if you got stuck in a physical place with the tinda that hasn't left yet-!!!
When is your spect????
Sincerely,
Posted by CatWoman (Member # 10900) on :
Sarah (California Lyme),
Thanks for answering.
Yes I definitely have been having suicidal thoughts. I also have these bizarre flashes of images of how to hurt myself (bizarre stuff) -- I don't know where that's coming.
I have two Lyme doctors working together. One of them (my main LLMD who has all the experience) says my symptoms don't fall under his area of expertise (he is a psychiatrist). At least that is the story as I understand it relayed by his physician assistant.
My older lyme doctor says that I should increase my detox efforts. I asked her if I could start chelation and she said no I'm not strong enough. It seems to me that I am not detoxifying properly.
The mood stuff and vomiting scare me the most. Last night I felt so sick I said to my mother that I thought I was going to die. I kept crying and crying and had to sedate myself. I don't know what else to do right now.
My spect scan will be in mid-October. I hope it shows something useful! Do you know how long it takes to get the results?
Yep I have 4 cats. They are sweet.
~catwoman
Posted by CaliforniaLyme (Member # 7136) on :
Good, I am glad you have cats!!! They are loyal and true friends in my experience. Better than many humans.
Have you thought of seeing a therapist? If you have insurance on the back of your insurance card there is usually a phone number that says mental health services- and if you call there for pre-approval you can usually get between, depending on insurance, 10-30 sessions a year paid for w only a small co-pay. If you tell them you are feeling that bad I am sure you would get approved.
When I was really bad I found it very useful to talk with someone who I didn't owe civility to- so I could just complain for one straight hour about the intense physical pain I was in- it did help tremendously- people can get tired of it and it can feel like rejection when they do even if they really love you. Or if they don't*)!!!
You know, that sounds very chemically induced, those flashes!!! My sister-in-law who had postpartum psychosis (I took care of her baby while she was in the hospital recuperating) had these horrible flashes of where she could see herself hurting her baby and it was all due to homrnoal upheaval from the pregnancy- her mother had the exact same thing happen after she gave birth and both had these things subside with time. Those flashes are common in severe postpartum deprsssion/psychosis. I really suspect the tindazole brought this fulminant in you- I know so many Lymies who've had flagyl or tinda bring out just horrible, horrible moods that they had never had before in their lives!!!
Spect scan results by my doc are usually a very fast turnsaround but it probably varies by office!!! I hope it shows something useful too- and that if you go on Rocepihn it does for you what it did for me-
Hey to your cats from my cats*)!! Bestest bestest wishes,
Posted by CatWoman (Member # 10900) on :
hey there. yep I do see a therapist. i wonder why my doc doesn't seem to think the issues i'm having are related to the tinidazole. weird.
i hope the spect scan does show something helpful.
~catwoman
Posted by AZURE WISH (Member # 804) on :
sarah wrote"Good, I am glad you have cats!!! They are loyal and true friends in my experience. Better than many humans."
I totally agree some of my favorite people have been cats. The people that stayed by my side the nights despite utter exhaustion I could not sleep due to severe pain were my furry yellow eyed purring angels.
I am sorry you are feeling so bad. I know treatment can seem like its gone on forver but things do get better with treatment. I know if you look in the sucess stories link I can remember reading at least a couple that talk about physch symptoms disappearing.
Also I wanted to mention that you should make sure the babesia is gone. If you look around in prior posts you will notice that it can be a very hard coinfection to kick.
Personally I think it kept my lyme from really resolving because I didnt know I had it for awhile into treatment.
Posted by CatWoman (Member # 10900) on :
azurewish,
thanks i'll check out the success stories. i will talk to my doctor about babesia.
~catwoman
Posted by Lymetoo (Member # 743) on :
I'm sorry...I haven't read all of the posts here. But are you still vomiting even after being off the tini??
Tini mixed with alcohol...even mouthwash can cause nausea and vomiting.
And yes, flagyl and tinidazole can cause severe depression!
Hope you are feeling better soon! Posted by CatWoman (Member # 10900) on :
hi lymetoo,
i was really careful not to have any alcohol (not a problem for me as i haven't in years anyway) and no mouthwash on the tinidazole.
yes i'm still vomiting off the tinidazole. i've been off it for three weeks now. the last time i threw up way tuesday night.
~catwoman
Posted by CatWoman (Member # 10900) on :
Hi all. I'm back from seeing my Lyme doctor. Thankfully I haven't thrown up since shortly before my appointment with him (Oct.16). The only thing I can think that I've done differently is cut out soy milk (which is a good thing I guess to do since I recently found out I'm estrogen dominant). I still get nausea from time to time but I haven't thrown up. Can't tell you how happy that makes me!
The depression is so much better too. I'm wondering if the depression and vomiting were related to the tinidazole.
I got my picc line put in Tuesday November 6th. I started rocephin Nov. 7th. I am pretty grossed out by the picc line thing and scared about it all! My arm gets more and more sore as the day goes on.
I am scheduled to see a cardiologist regarding my heart symptoms since they get so bad several weeks ago. I'm also going to see a GI doctor because my digestion is really slow and also regarding the nausea and vomiting.
I think that's about it for an update on me.
Posted by canbravelyme (Member # 9785) on :
Darling Cat,
Remember that your brain can also make you throw up. It may be more neuro issues, not your stomach. Yet it could be your stomach!
This disease is so strange. Coming from Can Brave Vomiting here, it took 2 years for me to suspect it might be my brain initiating the vomiting, and another 2 to prove it.
Let us know what transpires with the specialists.
xoxo
Posted by Michelle M (Member # 7200) on :
Hi Kitty-Cat.
Your SPECT was mid-October-ish?
What'd it say?
Usually those reports are back pretty pronto!!
Another test that might be useful: The Fry Labs blood smear (see newbie links above for address, etc). It can visualize babesia/bartonella in blood like none other.
Let us hear how you are doing, please.
Thinking of you!!
Michelle
Posted by CatWoman (Member # 10900) on :
Thanks you guys. I have to contact my doctor's office about the spect scan results. I did the Fry test when I was at my doctor but haven't found out the results yet.
My nausea is back! I'm scared I'm going to start vomiting daily again.
Thanks for replying. I hope to find out my test results soon.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Cat,
My nurse suggested taking benadryl -- an antihistamine -- when having non-stop nausea and throwing up.
It helped IMMENSELY -- it has always stopped my nausea and vomiting, regardless of whether due to a bad meal or a herx or a virus. In fact, everyone I have shared this with reports that taking benadryl works for stopping nausea and vomiting. Just wanted to share this with you.
The downside is that benadryl makes many folks very sleepy and tired; so instead of throwing up, you are sleeping half the day away! Which I will take instead of vomiting, any day!
Hope you feel better!
Posted by CatWoman (Member # 10900) on :
I'm back with an update. I've been on IV Rocephin 2 grams daily for the past 8 weeks. I'm also taking Urso 300 mgs bid. I recently had a two day break from the Rocephin and started pulsing it two days ago. I'm doing 2 grams twice daily (4 days on; three days off).
I talked to my doctor who told me my Spect scan showed moderately-severe global hypoperfusion. I saw the test and it mentioned something about the cortical area.
My Fry Bartonella test came back positive. My doctor started me on oral Levaquin (250 mgs bid) but with the Rocephin it was just too much. My yeast got a lot worse (yep I'm taking florastor and tons of probiotics and on the candida diet) and I felt too sick so he said to hold off on the Levaquin for now.
I have to get a copy of my metametrix ION panel results from my local doctor. The test showed I am deficient in multiple fat soluble vitamins. Also I'm low in some amino acids. I am trying to get a copy of the results before my consult with my LLMD.
Anyway here is a bit of a summary of my Rocephin treatment so far...
I had one blissful week in the first month where my bladder irritation improved immensely. Much to my disappointment the improvement did not last. Then it got really bad again and now it seems to have leveled off (with slight improvement).
I have had a ton of nausea/gagging/vomiting/sobbing/sudden depression/feelings of toxicity. Also at times my insomnia worsened.
The most dramatic worsening of my neuro symptoms has been in my sound sensitivity and light sensitivity. They have gotten dramatically worse (but seem to have now leveled off for the time being at least). As well one of my vision problems got really worse (what I call my wavy/shaky vision). I've never had it so bad before. That has leveled off for the time being too.
I have had a lot of worsening in my memory too. Like I go from room to room but can't remember what I went in there for (and I had one moment where I totally forgot a significant event that happened a few months ago. I just drew a total blank but then when someone mentioned what happened I remembered it again. It was quite shocking to me as I've never had such a gap in my memory before)
I wasn't noticing any improvement in my cognition until the past two days. I had two days of improved energy and my brain felt a lot clearer. My brain didn't improve as dramatically as it did on tinidazole (ie I didn't sit down yesterday and read a hundred pages like I did on Tini but I did read some articles in the paper and I wrote a bit). Generally I just felt more "with it" and less sleep deprived.
Today is another story. I'm not feeling so hot today. Just really sleep deprived.
I am having constipation. I thought it was because of the vomiting and not eating/drinking enough but now I'm not so sure since I haven't thrown up in a week. The constipation was better when I was on that 2 day break from Rocephin. Also my constipation improved when I discontinued diflucan. I finished 3 out of 4 weeks of my diflucan prescription and my doc said it was okay to stop a bit early because I was having so much nausea.
So I am definitely having a constipation problem. I am doing three times weekly coffee enemas. I'm going to start taking senokot again, fiber etc. I am eating vegetables and drinking lots of water and trying to do all the right things. Oh and taking lots of probiotics.
I'm a bit confused about burdock and dandelion. I'm supposed to use them on a short term basis. On the bottle it says to take with food but my naturopath said to take on an empty stomach. Does anyone know about this? I need to start on this again.
And I am giving glutathione IVs a try. I'm also doing once weekly nutritional IVs (sort of modified Myer's cocktail).
What I am wondering about the probiotics is it okay to mix them? I mean do Florastor and Threelac counteract other probiotics? Does anyone know?
I am trying to get all my supplements in but I'm not finding it easy to tell you the truth between my medications and supplements and probiotics I always end up forgetting a supplement here and there. I've bought a supplement organizer just need to start using it.
I think that is about it. I *just* started on the 4 gram Rocephin dose. I am pretty much expecting to feel miserable. 2 grams was really hard for me so I wonder what 4 grams will be like. I'm apprehensive about this!
I want to ask my doctor about taking tinidazole again. I understand it is important to take tinidazole or flagyl while on IV and I've not been on tinidazole since the summer.
Okay well whatever happens (ie I start feeling violently ill again) I will at least have had 2 days where I saw some glimmer of hope and that week where my bladder was better. But why doesn't the improvement last? Is this what people mean when they say it is up and down?
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I have a lot of nuero issues myself and have wondered about just how permanent this might be. In my readings however, I have seen reason to be optimistic! Things like our memory will remain flawed when we think back on this time, but most all other brain functions I believe will return, for the most part. I, of course, have NO medical training, I'm just someone else trying to understand & cope with what life has thrown at me.
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