posted
hi everyone..my name is jess and ive had what appears to be lyme since jume of 1999. i have been treated 3 times for lyme, once in august of 1999 for 12 weeks with doxy, once in 2001 with iv zithro for 9 weeks, and once with iv doxy and diflucan and artemesia.
with all these therapies, i experienced no relief from my symptoms the worst of which are vertigo, numbness, concentration diffivulty, fatigue, and severe gi issues including gastroparesis and inflammitory bowel and gerd.
i experience pressure in the head, disorientation, the works. i just started seeing a well respected llmd in ct, where i live.
he seems very thorough, but when i went for the last visit he said the fact that i did not herx or get better on the combo he tried me on of alinia, diflucan and levaquin leads him to think that i may not have lyme and coinfections.
the other possibility is my immune system is weak and i need to build that up first.
i have no parasites that have been found, viral load normal. i am anemic and have a high sed rate. ive been considering giving up. i am very debilitated by this illness.
for the past week, ivr barely slept and have not really eaten , im afraid im going to get worse or die. please tell me the truth-can i improve.
i tried holistics and herbs for 2 yrs and they did nothing at all for me. what do i do? im so so scared. thank you all so much, i promise any future posts will not ramble like this. love, jess
posted
sorry to rsamble more..i should add i tried rifing and found it to be awaste of time and money. i must say that my personal experience with the holistic community was awful.
i know it helps many, unfortunately it sickened me further. last year, a natural practitioner has me on what he called an anti lyme diet. i got down to 82 pounds and had a mild heart attack from malnutrition.
this has left me with a fear of natruopaths and of drs in general. i nearly lost my life, and i feel like im losing it now due to the illness. i saw dr p in ct for a year, and right before he stopped practicing he told me he didnt think i would ever get better.
i became so depressed but my dad-my only close relative-told me to not give up, and i love him so much i want to be there for him, but i find this world to be so cruel and confusing.
before this illness, i was healthy and happy. now im a shell of who i was. im 30 yrs old, and im tired of life. sorry to be so morbid, but thanks fore lettign me share. love, jess
Hey jess! glad you found us!!! More of us will be able to read this if you will click on the "pencil/pad" icon next to the date and then put some "space" after each few sentences. Makes it easier to read. If you can't figure it out, I'll repost what you wrote and break it up for us.
Thanks!!
Doesn't sound like you found a GOOD LLMD.. . reputation or not. YOU CAN GET WELL!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I agree, doesn't sound like a good LLMD. First, Levaquin is for bartonella and doesn't do much for Lyme. Diflucan is for yeast. And Alinia is for parasites. You are not taking any drugs at all for Lyme Disease.
I also agree with Lymetoo. You don't use capitalization and there are no spaces. Your posts are very difficult to read. If you add spaces and capital letters, more people will answer. The two of us could answer because we are better from Lyme, but people who are sick, can't read your post.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi everyone. Thank you for the reponses. Is there any way you guys could tell me what to do to make more spaces so posts are more readable. I'm not stupid, just computer illiterate. thanks
Posts: 651 | From ct | Registered: Sep 2011
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More of us will be able to read this if you will click on the "pencil/pad" icon next to the date and then put some "space" after each few sentences.
- Go into the "text" when you get to the edit function as described above. Then after your second sentence, hit "enter" twice to put the space there.. as you would if you were "typing."
Then go down another two sentences and do it again. Your text will then look more like my post looks here. It has capitals and it has space. Very easy to read.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My story is long, and as a result, I am very distrustful when it comes to doctors. I went undiagnosed, and misdiagnosed for 13 years. I was finally diagnosed with Lyme almost a year ago. Because of the wrong treatments, I was clinging to life when I started seeing my LLMD a year ago.
I can tell you that if you are persistent and dedicated, you will get better. Will you get 100%? Maybe not, but you CAN get your life back. When I started with my LLMD, he said that I would probably not get" cured". So I adjusted my goal. Now my goal is to get functioning again.
Your first step is to find a doctor who you trust. Do not settle for any doctor that is not Lyme Literate, or does not Neel rights. You will be creating a team of medical professionals who are deducted to helping you get healthy. Do not have anyone on that team who is not going to make that their priority.
The next step is to, with the help of your doctor, devise a treatment plan to get you your life back. This will include medication, supplements, diet, rest, exercise, and getting emotional support. I joined a local support group, and they are angels in my life. Lyme is a complicated illness, and most people will not know how to give you the support you need, but fellow Lyme sufferers will. It has helped my depression level immensely.
Next, you have to follow the plan. Compliance on your part is critical. You need rest, proper diet, proper supplements according to your symptoms, and quality detoxing methods. You also have to be flexible. You will probably have many failed attempts before you find the medication combo that works for you. And even then, it could work for a while, and then with no rhyme or reason, it stops working.
Fighting Lyme is a long distance race, not a sprint. It is full of setbacks and can be discouraging. But if you can stay patient, flexible, persistent, and stubborn, you will have the best chance possible of getting healthy. And unfortunately, when you start treating, you will get much sicker before you get better.
I am of the belief that you need help alleviating symptoms in the process of healing. If you have pain, take medication to help alleviate the pain. If you have insomnia, take something to help. Depression... same thing. When you get healthy enough, these symptoms will lessen or disappear. Then you can stop taking the medication. All of this, of course, at the direction of your doctor.
I have learned that in order to survive this awful disease, you have to get stubborn. Really stubborn. And patient. You can get better. I have been treating for almost a year. I have had my fair share of setbacks. I just started IV rocephin yesterday. I have a long way to go, but I have improved so much. I still do not leave the house very often, but I used to be bedbound. I was in much much worse shape a year ago.
And please, reach out to this group for support. Everyone has been so amazing to me here. I don't know where I would be without the spiritual support and expertise on Lyme treatment.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
All of your symptoms sound like Babesia. Your LLMD should know to try you on anti-malarials.
I'll see if I can bump up a Babesia thread for you.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Please don't rule out parasites as the testing is very inaccurate. You might want to try an antiparasitic herbal to see if you get a response. Do a search on here for parasites, and also google parasite symptoms.
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
all good responses, and also, there are people who do not ever herx. it isn't proof of anything. i never had a herx that i know of.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It looks like babesia, I agree. Babesia causes anemia quite fast, and fatigue, depression, and it looks like controling your mind!
Don't give up, MOST people improve, with any therapy they choose!! You got to be persistent.
Nailing the babesia was the MOST important step for me. I felt CONSIDERABLY better after and many here in LN report the same!!! Once babesia is gone, part of your energy gets back and your mind gets clearer.
Babesia fog and babesia fatigue were by far, the WORST I ever experienced in this life.
Posts: 6199 | From Brussels | Registered: Oct 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am so glad you found your way here. I agree with everyone else that your symptoms sound like a babesia infection and the meds you were given do not address it.
You should be on antimalarial drugs. It is not easy getting well but it sure beats the alternative. Babesia causes horrible confusion and basically what can feel like complete dementia. You also feel exhausted and depressed.
When you begin treatment your symptoms may worsen for awhile but you will come out of it. Not far down the road you will enthusiastically congratulate yourself when you can think well enough to do simple calculations again.
Then one day you will be awe struck by the beauty of something you have not heard, seen or felt for such a long time.
It is wonderful you have such a loving supportive father. All you need is a new doctor. Post in seeking a doctor and someone will help you.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Sending healing thoughts . A lot of good info above. Your symptoms sound a lot like me. I'm still fighting this, but I'm a lot better than I was. Babesia and Bart are my main beasts. I bet they are yours too.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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I've treated parasites, h.pylori, lyme and now babs, bartonella is on the future list of things to treat.
It's a long haul. You have to dedicate yourself to a goal and do whatever you can to get thru it. There are so many things out there to do as far as therapy, and so many ways to do those same therapies.
Educate yourself the best you can and keep going. You are your own advocate and Lymenet is here to help when you get "stuck"
And again.. it's been a long year, but you have to remember to not let the illness rule YOU. You are not the illness, do not let yourself be defined by what you "can't" do. Do your best always
posted
I had Lyme for 25 years before a proper diagnosis. I'm glad you've found this forum, as the people here are informed and wonderful!
I know Lymetoo sent you a pm about getting a proper LLMD. Meanwhile, do yourself the favor of eating well. I don't mean a strict diet, rather eat healthy foods, avoid sugar, and get some sunlight each day.
Whole grains, lots of veggies, lean meats etc. The goal is NOT to lose any weight, rather you are trying to get as many nutrients as possible to help your body heal.
These things will help your body slowly, but it will help you maintain and maybe even improve a little while you are waiting for proper treatment. Saying prayers.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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