posted
Please hold on...we are all with you and care. Have you been treated for co infections first? Sometimes if not then lyme treatment doesn't work or hold. Have you been tested for detox issues?
Five months is still very early in treatment for some. Can you tell us what you are on or have been on?
I am praying for you...there is hope at the end of this treatment. Some have been on this for 1.5 years so you still have a ways to go. You have many here that care...let us know how we can help.. God Bless You
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
thanks i really like and trust my doc i just dont know why im getting worse ceftriaxone flagyl zith
Posts: 61 | From limbo | Registered: Nov 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
You're on a lot of strong medicine.hold on. You're tired and scared. Try to detox. Take antidepressants or whatever it takes. This tries every bone of being. Pray if you don't believe, it will come.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Flagyl is well known for causing depression. You may need to call your dr and talk to him about it. It's the DISEASE or the MEDICATION talking to you right now!! It's not YOU!
You are probably killing spirochetes right and left with the meds you are on. That will make you feel WORSE, not better. Happens to all of us.
hang in there and please call your doctor!
Anybody here have the suicide hotline number???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Get Help ! If you or someone you know needs emotional help, please call the National Suicide Prevention Lifeline during a crisis. You can reach the Lifeline by dialing 1-800-273-TALK (8255) .
Who Should Call?
- Anyone, but especially those who feel sad, hopeless, or suicidal
- Family and friends who are concerned about a loved one who may be experiencing these feelings
-Anyone interested in suicide prevention, treatment, and service referrals
Details About the Lifeline
*The service is free and confidential *The hotline is staffed by trained counselors *Available 24 hours a day, 7 days a week *Information about support services that can help you
TTY Users If you are a TTY user, please use our TTY number: 1-800-799-4TTY (4889)
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
tamboski, you are not alone.
Healthy family and friends cannot understand what it's like to be as sick as we are. That's why we're here, to learn and support each other, to have friends that do understand.
Does your doctor know how sick you feel? Can you please talk with him, maybe it's time to change your medicines, try something new.
I've been sick for 6yrs now, have been trying to treat for 2yrs (with IV's, orals, supplements, alternative medicine, HBOT). I've had dark times where I've felt like I'm not going to make it and times where I've prayed that God would let me die. I'm glad to say that I'm still here!
I'm still sick and struggling but I'm going to fight this through. I want to live. I want to work and travel and spend time with my friends and grow old with my family. There's so much that I haven't seen and done. I can't let these diseases/infections win.
Same for you tamboski. You're not done yet. Call your doctor, it sounds like you need a new battle plan.
Posts: 5237 | From here | Registered: Nov 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Please call your LLMD. As Lymetoo said, depression can be a side effect of a medicine and can be a symptom of the disease. It's important to call NOW!!! Tell your LLMD how you feel.
And, you are NOT ALONE!! When I was sick I was not suicidal, but I did pray that God would take me because I could not take the pain anymore. I was bedridden and disabled by this disease.
Today I am 100% well. What a difference a couple years makes!!! Hang in there, we are here with you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
THANK YOU for reaching out instead of suffering in silence! That takes incredible courage! You matter. Please take the good advice youve gotten here. We ALL care!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
When I began taking abx I was sure I was dying. I called to arrange a burial plot and called all of my friends to say goodbye. There was no drama attached to this at all.
I told my LLMD what I did at my next appt and he started to laugh. (not in a cruel way) He said that it was very common when starting treatment and that many of his patients had the same reaction.
PLEASE hang tough with this because you will get through it. I know it's rough, but things will lighten up for you. If you have a heavy bacteria load it can be very difficult.
I am 95% better and heading to 100%. We are here for you, and please discuss how you are feeling with your doctor.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
thx for the suggestions i read the board daily but rarely post i just feel like i have noone to talk to i dont need a psych to talk to bc noone can say anything to make it better unless youve seen it first hand like my doc or people on this board
Posts: 61 | From limbo | Registered: Nov 2009
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posted
Some ALS/Lyme cases are harder to treat than others. I know this because I am one of those. But you have not been in treatment all that long, so it is too soon to say that this cannot be reversed. So, don't give up yet. Keep treating and hope for the best.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
thx lou i had the rash fall 2008 and didnt have als symptoms till summer 09 dxd nov 09 and started lyme treatment earlier this year it happend very fast
Posts: 61 | From limbo | Registered: Nov 2009
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posted
tamboski: So sorry, how frightning for you to have all this happen so fast, you were probably able to just about manage the emotions before starting the antibiotics so you must be a very strong person. If you could do that before then it is more likely the antibiotics
Some people have to take it much slower on the antibiotics than others, I think it might depend on where the lyme is and how infected you are.
I have tried many times to get on to flagle and for the momment have given up. My first time I ended up in the er the doctor told me this is the hardest antibiotic, he goes to africa every two years and when he comes back he goes on flagle. He said he is 6ft tall in excellent condition (pretty cute too) and flagle brings him down to a babbling idiot.
As I have been sick for many years I have a good medical support system they know my personaly so I have an arsenal of medications to help me when I feel I can't stand another minute.
Take all the help you can get from each of your doctors including valium or something that can give you a break away from all this even for a few hours
Perhaps your llmd will suggest backing off a bit as I but there is a way to stop feeling as you do.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm so sorry you are suffering. We've all been there. I wanted to die every single day for my first 18 months of treatment. I was barely working, so I was home alone most of the time. My husband was scared to come home from work, because he didn't know what he might find.
Please hang on. It gets better. I would not lie to you. Five months of treatment is too soon to make any predictions. If you are with the right doc, you can get well.
Even during my second year of treatment, I wasn't sure if I would ever get well. I herxed, but couldn't see overall improvement. I am now in year three (I've been infected MUCH longer than you have), and feeling 80-90% recovered. I'm off my Zoloft and Klonipin. Life is getting better.
In hindsight, I wish I had addressed my depression and anxiety sooner. I put myself through much needless suffering. And I wish I'd been kinder to myself. Worried less and watched more movies.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
"When all was clear, I felt a very natural clarity, calm, and even joy. Completely natural... no having to work for it as I used to have to do. I suspect this is how we are all supposed to feel, as human beings, just as a basic foundation."
I love this quote from this thread. I could read it every day.
posted
Please know you are not alone. I think at one point we have all felt that way. I know at one point, I could not tell if I was having a severe herx or an anaphalatic allergy to my medicine. I would NOT tell my husband where my epi pen was. I told him I could not do this anymore.
Things got better. I have been very concerned about the ALS thing myself. Atleast you have a chance of beating this, even as hard as it is. Please dont give up...talk to everyone here. We all feel the same way at some point.
Also, FYI, I too wrote goodbye letters to my family and looked into my life insurance policy when I started treating because I too felt like I was going to die.
Your in our thoughts and prayers.
Posts: 747 | From Utah | Registered: Apr 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Thank you all for sharing so candidly..... I thought I was in the minority of not feeling as if I could go on at times. It's a comfort to know we are not alone. I am so thankful I finally found my way to this site just a few weeks ago. It has been a tremendous support.
tamboski -- my heart aches for you. I hope this site has shown you that you are NOT alone. This is a safe place to come and share. Please don't do anything drastic. Life is worth living. You are just having a tremendously difficult chapter in your life. Tap into the belief that it WILL get better. Plant this seed, and fertilize it with as many positive thoughts as you can. Like the saying goes 'what you dwell on expands'. So try to shift your thoughts into dwelling on more positive beliefs. I know it's not easy, but try. Feel for you.
I know you like your doctor, and that's great, but is he/she an ILADS trained LLMD? Just curious. This makes ALL THE DIFFERENCE. Liking a doctor I think is very important, but with our disease, it is absolutely CRITICAL to have a truly Lyme Literate one.
Sending healing thoughts your way, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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In hindsight, I wish I had addressed my depression and anxiety sooner. I put myself through much needless suffering. And I wish I'd been kinder to myself. Worried less and watched more movies.
So true for many of us!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
tamboski --
Feeling Worse is actually a Good Sign --
Its likely that you are Herxing - Herxing is when the Bugs are being killed off-
The bugs are releasing toxins that will make you feel Worse --
One thing to keep in mind is that the bugs feel Worse than you do --
All of us here have thought about doing our selves in Many Times-- myself included --
Now after some Good treatment I am Symptom Free and have My Life Back --YOU Can TOO --
Treatment is not easy and its Sure No Fun -- But as you see Many of us are healthy Now-
Giving up is letting the Bugs Win --
I was as sick as a person can be and still be alive -- 18 years untreated -- Lyme and Babs --
I was Completely Alone for months at a time- If I can get threw this-- You Can Too --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
tamboski, I'm sorry, you have to deal with this, it really stinks for all of us, but you have to stay positive and hang in there.
I just want to tell you that my LL neurologist Dr R believes that lyme patients with ALS type sypmtoms must have and need to be treating for Babesia.
so see if you can add some Mepron to go with that Zith
also don't forget to prey, because one of the ways god instills faith is by answering prayers
hang on and dont forget the Babs treatment Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Don't always believe what the doctors tell you.. You know yourself best and when they plant that seed of doubt it can cause all kinds of anxiety. Try to stay positive and know that the body is made to heal. We just need to give it a little help sometimes. My daughter was not improving at all until she tried a parasite treatment that did wonders for her. Between that and the Flagyl she is at 80% most days.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sounds like you may have to back off meds till you can tolerate more. Some LLMD's say this is a marathon not a sprint.
You do not have to kill yourself with treatments...
I found early I could do just pinches to start and the more I worked them the more I could add in...
A great probiotic, yeast control, replace electrolytes, and detox, detox, detox were life savers for me.
After a year and a half of this I am signing up for some classes...Don't give up, re-evaluate.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I just had a 2-week herx, which ended in a rapidly worsening depression. It didn't make me want to kill myself, but it made me badly want to just give up trying.
I was panicking and terrified because this is NOT my personality or an illness I have ever dealt with before Lyme. I couldn't talk myself out of it, and anything people said to me had little effect on it. Sometimes sleep helps, but it wasn't helping this time.
I backed off all my meds for 2 days, and presto, the depression went away. I restarted most of the drugs, and now I'm having some physical symptoms again, but not the mental ones. I feel like my normal, cheerful self again.
My situation doesn't compare to yours because I think you are dealing with a lot more than I am. I just share this to point out that terrible depression can be a physical symptom of herxing or drugs or both, in which case you need to detox and/or back off the drugs (with your doctor's advice) or try a different combination, or see if an antidepressant drug will help, since it can be your physical chemistry making you feel the desperate way you do.
The other thing to remember is that the bugs will try anything to trick you into giving up the fight against them. Don't let them win.
Hang in there. You are definitely not alone--many others have shared similar feelings on this board. I hope you will find some relief soon.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Hope you are feeling some better. It's good to know we are not alone.
At least we have each other on here!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
When I said some ALS/Lyme cases are harder to treat, I meant that some cannot take normal doses of meds because the inflammation, presumably, that is caused during the herx does more damage to neurons, and causes more muscle wasting. That is my problem, and I am taking low doses.
But not all cases are alike, so you need to stay tuned and see if this is your situation. If not, then you can stick with full doses and find some way to combat the depression.
I personally think cases like mine are the most challenging and difficult, but then the bart people might disagree with this!
Not sure that I can believe all ALS/Lyme cases have untreated babesia. Mine WAS successfully treated. But it is certainly possible that other microbes make a higher germ load, causing more damage.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
thanks another stellar start today........gagged on the multivitamin when i started iv my symptoms improved ]when i stopped the orals bc of my liver i slid back down resarted oral and no improvement......slight worsening
Posts: 61 | From limbo | Registered: Nov 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Please make sure to detox adequately... Pekana detox is really great and addresses alot of issues. It is used alot for elevated liver enzymes but works on other major organs (kidneys, skin, brain) as well.
Most, if not all, folks on this board have felt the way that you do! We all understand...completely!
This whole ordeal is crap and really really sucks big time...it is hell on Earth, if you ask me!
Like Lance...LIVESTRONG...you can do this!
HANG IN THERE, MY FRIEND! Brighter days are ahead!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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quote:Originally posted by lou: When I said some ALS/Lyme cases are harder to treat, I meant that some cannot take normal doses of meds because the inflammation, presumably, that is caused during the herx does more damage to neurons, and causes more muscle wasting. That is my problem, and I am taking low doses.
But not all cases are alike, so you need to stay tuned and see if this is your situation. If not, then you can stick with full doses and find some way to combat the depression.
I personally think cases like mine are the most challenging and difficult, but then the bart people might disagree with this!
Not sure that I can believe all ALS/Lyme cases have untreated babesia. Mine WAS successfully treated. But it is certainly possible that other microbes make a higher germ load, causing more damage.
my understanding was that it should be a slow recovery., i felt that until i came off the orals i restarted, and have not recovered
what is really starting to anger me is every article, video on lyme says bb can be misdiagnosed as als. but where are all the success stories. it seems it is all based on like 3 people, who may have only had random sx. im sorry to sound so negative, but im a factual person, and i want to know for sure when i do decide to pull the plug
all i know is WHEN I DIE IT WONT BE FROM ALS
Posts: 61 | From limbo | Registered: Nov 2009
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posted
lou or anyone?
Posts: 61 | From limbo | Registered: Nov 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There are many things Lyme patients can do to help their treatment along...Most don't have the options of trying them....We are not sick remember...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Are you with a top notch ILADS trained LLMD? I think you need to see the best of the best, even if it means traveling.
Hang in there. We're all rooting for you. Best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Have you read Pam Weintraub's book "Cure Unknown?"
Chapter 45 talks about his ALS/Lyme patients. I did not realize until re-reading it just now, that he thought it was true ALS, triggered by lyme. And it talks about how his patients responded.
However, I am not sure I understand his reasoning, because he was treating with antibiotics, which presumes a bacterial cause. And if spirochetes are attacking neurons, or creating an inflammatory environment, then surely bacteria can cause something that looks like ALS. And anyway, ALS is just a syndrome, not a cause.
Posts: 8430 | From Not available | Registered: Oct 2000
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I wish there were a place where we could find all of the stories of folks who were diagnosed with ALS and yet got better with Lyme & co's treatment.
I know I have run into many of them since I began seriously researching Lyme in late 2007. I am pretty sure there are at least a few threads covering ALS/Lyme here and linking to some stories and studies.
Here is the most recent one I have run across, a happy story from California:
"Fisher: After long struggle with Lyme disease, Bart's going home"
He isn't ALL better yet, but he is much improved, and going home now to treat further. He's smiling and walking with a walker, instead of needing nursing home care, a wheelchair, and a breathing apparatus.
We all know how important these stories are to all of us. I will try to look for more for you as I am able.
Please keep staying with us, and trying, though I know how very hard it can be sometimes.
If you had some improvement before on your meds, but they aren't working the same now, that is still a GREAT sign that they were effective at treating something.
Now your Dr(s) just need to work with you to find other drugs that work as well - no reason to stick with these particular ones right now if they aren't as effective as they used to be. You can always come back to them later and see if anything has changed.
Our body chemistry (and the Lyme) changes so much during chronic illness and inflammation, it might change yet again in the near future.
I'll get to searching for more good ALS/Lyme stories for you.
posted
Thank you for sharing your feelings, as many of us have had those moments. You must keep trying as there is a very good chance you can get better. I really believe that when one of us feels better, or decides to keep trying, it helps the whole group.
I had not so good thoughts today...it is difficult and long. But you are still here. If you are here it is for a reason. If you are receiving treatment, it is for a reason. You can do this, and no...you are not alone. Bless you and you are in my prayers
Posts: 172 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Look at these lesions, and know the lesions we find on Lyme patients brains take time to heal.
This is not Strep you are getting rid of easily...This is one mean bug and you have to get mean to beat it.
No sugars, loads of electrolytes, loads of detox, lots of different meds and
Borrelia love the skin, eyes, juicy parts, such as joints, brains, and I believe lungs. As many report lung problems early.
5 mths.---I know---It is an unbelievable long road---But there is light at the end. Praying for you....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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