posted
I have had lymes for 4 years. Was treated, not long enough, then told I couldnt possibly still have it, spent a lot of money to figure out what was wrong, doctors could find anything, suffered through for 2 and 1/2 years getting sicker and sicker. Finally found a doctor who treats lymes and whoops, still have it. Now its been 4 years, I am still sick, the doctor and tests are too expensive and I am struggling. I am on three meds Flagyl(3xday),Zithro(1xday) Ceftin(2xday). They make me feel so sick and the longer I am on them the sicker I feel. But I have noticed some relief mentally with the flagyl. This disease has destroyed my life, I am asking for any one who has had neurological lymes to please help me understand this disease more so that i can help myself and those that I love. They think I am crazy, stupid, ignorant, etc. I forget what I am doing, conversations Ive had, cant find the words for sentences and over all just feel lost and alone. I am glad to have found this website again. Please help. Posts: 5 | From San Jose, CA | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome!
I am sure you will find a lot of folks who are having the same problems here who you can speak with on the board.
You will get good information here.
Hang in tonight and the morning crew will be up sooner than you can say boo!
posted
I can so relate to you and your frustrations. I and many here have very similar stories. I also have neurological lyme and go through those same problems everyday with the brain disfunctions.
It is embarrasing when you are talking to people and suddenly you cant remember what word you are trying to say. Or something I talked about to someone yesterday and I will complete forget every having that conversation. It feels like I am getting alzheimers. (which my mother does have)
I feel sorry for you though, that your family is not supportive. My husband is sooo understanding and supportive. He completely feels bad for me and constantly trying to reassure me that I will get better and this is only temporary.
I cant imagine how bad you must feel if you dont have someone believing in you and supporting you.
This is a horrible disease and yes it does feel like it ruins our lives. I am hopeful that it is only a temporary set back though.
I also have had Lyme for 4-5 years. Also treated, but not enough. And I keep relapsing, and everytime it gets worse.
This time I intend to stick with my llmd at all cost and take allllll of the abx that he prescribes until allll of my symptoms are gone for over 3 months.
From what I have heard about your meds making you feel worse is that it is worse before you get better. How long have you been on abx???
I know someone will come along with better advise than me, but I just want you to know that you are NOT CRAZY
This is part of the disease and it is frustrating!!
I hope you can find some support both emotional and financial.
God Bless and Take Care
and know that WE CARE ABOUT YOU!!
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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Vanilla
Unregistered
posted
I just wanted to say I am wishing you a speedy recovery.
I too had horrible neuro problems and I am feeling much better at the moment. It can and does get better.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am not sure this will make you feel better,
but how about a Speech Pathologist who can't remember words.
I can be in the middle of a sentence, get distracted,
And not be able to recall what I was talking about.
Kind of hard for me to work with this word finding problem.
Good news is my short term memory has gotten better.
New information is still sometimes difficult for me to process.
It absolutely exhausts me.
Hang in there. Stick with your LLMD.
I have not been in treatment as long as you, and still sometimes get discouraged/depressed.
I know we will both get past this and get better.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Mornin' PetulaLee!
Your symptoms sound so familiar. I'm glad you finally are getting some care. Non- lyme literate doctors ought to have to answer to all the people they've harmed by undertreatment and refusal to deal with bacterial persistence.
A huge percentage of people with lyme have brain perfusion problems on SPECT scanning. I.e., not enough oxygen to run things properly!! The good news is that this is reversible most of the time with good treatment. (Repeat SPECT scans prove this.) So keep treating, even though it can be miserable to go through. If you were in a position to do it, IV can be powerful stuff for brain lyme.
Don't be discouraged. Fight! Read the success stories. Take tons of probiotics -- grab a bottle of Theralac to combat the effects of your multiple abx. Allow yourself a lot of rest. Cut out unnecessary stuff. Get help when you can.
Sometimes it's we ourselves who refuse to slow down and heal. That's because we keep on trying to make things just as they were before lyme. For now, they're NOT!
I used to try and make up excuses too for scary lapses -- don't know why we do this. Now that everyone's "onto me" I don't bother anymore! I've even tried to lighten things up by poking fun at myself and my inability to process things swiftly or remember. Remind everyone, on a serious note, that you have a brain infection and you'd appreciate their understanding. Have them read articles about neuro lyme if you think their eyes won't glaze over!
And hang in there. There IS light at the end of the tunnel!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I can't stress enough how frustrating this disease is - especially when it's neuro. You feel like you're not even close to yourself and yet, you function because you have to. When I was at my worst 2 years ago, I found that I have a sodium problem also - that compounded my psych symptoms. Look into that also. Last Saturday was a re-enactment of 2 years ago. Started IV rocephin last monday and my sodium is going up to regular levels. Have patience - I know how hard this is but the good days will be mixed in. Everyone on this site has been supportive because everyone can relate to symptoms of how tricky this disease is. This site helps so much.
Be well, Lyme in Putnam
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I am sorry for you. Hang in there. Have you talked to your doctor about something possibly blocking the ability of you getting better? Sometimes, there are heavy metals, or other factors involved in your recovery of lyme's. I was getting sicker with my treatment too, and found out that I also had H.Pylori and Mercury and Lead issues, as well as Leaky Gut, and hormone problems. The key is to get your immune system stronger so that you can fight these buggers. Good Luck to you!!
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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ByronSBell 2007
Unregistered
posted
No wonder you feel bad, your taking 3 flagly, a zithro, and 2 ceftin a day. THAT IS INSANE! If I did that everyone would be at my funeral today. I can only pulse a 1/4th a pill of flagyl before I throw myself overboard. Try backing off your ABX for a few days or get completly off of them for a while and then start back again. It can do the body good to give it a break.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I agree, Byron, the protocol sounds murderous.
Petulalee, I feel for you. I'm glad you found this board as you will get a lot of positive feedback.
Many of us are living your story to some degree or another. Just know you're not alone.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
thank you for your replys. this has affected my life so much. it is so good to know that i have a future to look forward to beyond this disease.
Posts: 5 | From San Jose, CA | Registered: Jul 2007
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