posted
Rhetorical question! I have had Lymes for nearly 15 years. I found a lyme literate doctor three years ago. While my health has improved greatly since he started to treat me, I am face today with a sobering dilemma. I am on my last available antibiotic. Lyme has mastered them all now. The symptoms that have ravaged my body all these years are returning in their glory slowly but surly. I have a call into my doctor, but what can he do besides confront me---hopefully. I am glad that my health improved, I was able to realize for a short time what "normal" health was like again. Now the question is what will the path to the end look like. I had hoped the story would have had a happier ending. I guess the moral of the story is: don't wait to be treated----like the Norwegian are fond of saying---DA!!!!!! While I have lots of regrets, the most notable one is I will not see my children grow up to be adults. I hate the thought. My hope for all of you battling this awful disease is: for you to return to normal health. God bless.
Steven
-------------------- Steven Posts: 13 | From detroit lakes, MN | Registered: Jun 2003
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Sounds like you have lost hope. My experience has been that many/most people with treatment do recover. Have you been tested for coinfections and treated for those as well? What do you mean you have run out of ABX? That does not sound like a common occurrence. Are you working with a doctor that is really knowledgeable in this area? What is the doctor saying?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:Originally posted by SForsgren: Have you been tested for coinfections and treated for those as well? [/QB]
There is plenty of hope. Just don't give in or give up!!
I had undiagnosed Lyme for 42 yrs before beginning treatment. I am now doing great after 5 yrs of treatment. My LLMD also treated me for co-infections....something you need to do before giving up.
I would not stop abx if I were you. Sometimes you can go back through the meds and get some help even if they didn't work before.
Have you taken Ketek?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Originally posted by SForsgren: Sounds like you have lost hope. My experience has been that many/most people with treatment do recover. Have you been tested for coinfections and treated for those as well? What do you mean you have run out of ABX? That does not sound like a common occurrence. Are you working with a doctor that is really knowledgeable in this area? What is the doctor saying?
I agree with scott.
There is a ton of antibotics... I have been in treatment since 2000 and I havent come close to using all the possible antibotics for lyme.
Are you sure you have a lyme literate dr?
Maybe you just need a new dr.
I have had lyme since sept 1987... I am getting better and I intend on making a full recovery.
posted
I would suggest you try some of the herbs in the Healing Lyme book and or colloidal silver (Argentyn 23).
Hubby has not tried all that many antibiotics, but his LLMD has started telling him that not everyone gets well.
That is not acceptable to me. I don't necessarily expect him to be 100%, but I feel like he should be able to recover to the point where he would at least be what I consider "functionally disabled".
I think that some people do better with natural treatments. That is where we started out and he had such severe reactions he ended up in the hospital 4 times in a month I think it was. Then we moved on to IV antibiotics and the really bad scary symptoms like seizures started showing up.
If you do not have a herx from andrographis then maybe your problem is from a coinfection or simply toxicity from all the drugs.
Each doc has their favorite meds. We changed docs because a former doc wanted to try all the newer drugs for babs. Hubby had an allergic reaction to Mepron and then the mood swings from Larium were just too severe.
The new doc tried quinine (an old drug many LLMD's won't use) -- it gave hubby the first hope he had had that he might actually recover. 2 great months and then downhill from there -- prety sure the babs is still on board but I am confident he will beat it this go round. Going to try some new herbs with the quinine this time.
Try posting some more specific details regarding your symptoms and which meds you have tried. There are a lot of really smart helpful people here who can help get you pointed in the right direction.
A change in docs might be in order. Sometimes it really does need a new set of eyes to see something obvious.
Good luck and my hubby Stephen says hi.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
have you treated for yeast as well? that can make you feel just as bad as lyme if its raging out of control. pattiecakes
Posts: 687 | From PA | Registered: Oct 2004
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posted
I want to thank you for your responses and supportive statements. Yes, i have lost hope but I can get it back with support. It is lonely fighting this battle. My doctor is good, he lives in Missouri. He talked to me last time about starting silver. I worry about the future especially worry about my family, dog included. I ought to use lyme net more, but I am Minnesotan, while we are nice, we are also independent to a fault. I need to see my doc again, I have an appointment next month. I have tried Ketek, but it did nothing for me. I have been treated for coinfections as well. But I think babs is the one that is casuing the most trouble now. I will see what the future brings. I promise I want give up. I am just having a bad day!!!!!!!!!! God bless
-------------------- Steven Posts: 13 | From detroit lakes, MN | Registered: Jun 2003
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Start thinking out of the box. If you're doctor were no longer here, you would have to search elswhere, wouldn't you? There are other options for you.
I posted herbs that I am taking specifically for babesia, lyme, bartonella etc. I have had lyme for 28 years, diagnosed in 1999. On abx for 3 years...had to find alternative.
These herbs are working for me. If you need info you can pm me. You can heal from this. Just believe it! Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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Susan Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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bettyg
Unregistered
posted
Steven, I'm breaking this up for us neuro lymes who can't read long, continuous paragraphs.
Please hit enter often and double space ok.
Please edit/pencil your 2nd long response ok.
quote:Originally posted by hopetoo:
Rhetorical question! I have had Lymes (it is "lyme" not lymes) for nearly 15 years. I found a lyme literate doctor three years ago.
While my health has improved greatly since he started to treat me, I am face today with a sobering dilemma.
I am on my last available antibiotic. Lyme has mastered them all now.
The symptoms that have ravaged my body all these years are returning in their glory slowly but surly.
I have a call into my doctor, but what can he do besides confront me---hopefully. I am glad that my health improved, I was able to realize for a short time what "normal" health was like again.
Now the question is what will the path to the end look like. I had hoped the story would have had a happier ending.
I guess the moral of the story is: don't wait to be treated----like the Norwegian are fond of saying---DA!!!!!!
While I have lots of regrets, the most notable one is I will not see my children grow up to be adults. I hate the thought .
My hope for all of you battling this awful disease is: for you to return to normal health. God bless. Steven
Steven, yes this disease gets to you and takes the wind out of your sales, and hope out of your heart IF you let it.
Yes, sounds like you need to change to get a better LLMD.
I'm quite down now too; so I understand that perfectly. BUT LIVE TODAY TO ITS FULLEST. Don't put off anything you can do and ENJOY today.
Steven, if you and I do not live longer as a result of our advanced lyme disease, and you can't watch your kids grow up.
My personal feelings are: YES, you will, but it will be from Heaven, and your kids will still be able to talk & see you depending on their "young" ages. Everything will be different, but who knows until we die and our souls go to Heaven.
As stated above, there are many types of abx. Print off Dr. B's 2005 treatment guidelines from TREEPATROL'S NEWBIE LINKS...top of medical.
Read, read, and read. Knowledge is power. Don't let them take that away from you too.
May God bless you and help you thru this trying period Steven.
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posted
Not sure you should give up on the abx you have already taken. Did you read the thread by the person who herxed again on doxy after being off of it for a long time? There is a theory about a metabolic cost for microbes to develop resistance components, and that if too much cost results from being exposed to a lot of different abx, they can lose some of those elements, making it possible to re-use abx from earlier treatments.
Sometimes it is a matter of getting a different combo of drugs, different dose, etc. For instance, when I was on a lower dose of septra + minocin, no herx. But when the septra was increased to higher dose, there was a definite reaction.
Three years seems like a long time to you, but people have been fighting it for a lot longer than this, so you have to be prepared for a marathon.
I think, based on my own case, the best goal is to achieve a level of functionality, not a cure. So, if you can get to where you sleep fairly well, can get around, do some things, then this should be considered progress, holding the fort. Maybe it will get better than that, will eventually get to a remission, but best not to set sights too high, for fear of losing hope when it doesn't happen.
You are going to a good doc, so I don't know what to say about that. Sometimes if a doc sort of gives up on you, might be good to switch, find someone with a different idea of how to treat. Since no one has all the answers to the lyme enigma, it doesn't hurt to listen to more than one voice.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks to all who have responded to my post. I can not tell you how much you imput has meant. I want the nightmare to be over and over asap but I am realizing more now that it will be a "marathon" rather than a walk in the park. I won't give up. I am open to using whatever means it takes to improve. Folks mentioned herbs, I would use them if someone could give me the names of them, and the dosage to take. Can you take them in conjunction with abx? Hope you all have a grand day. Hoppy Easter bounce bounce!!!!
-------------------- Steven Posts: 13 | From detroit lakes, MN | Registered: Jun 2003
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am just a lyme patient with no medical background but my thoughts are
What was you put on for babs...
I have heard of alot of people not recovering until the babs is PROPERLY and ADEQUATELY adressed.
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