Nothing looks like it helps! Is it hopeless?

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sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/5/2008 8:56 AM (GMT -7)   
Everything I read from day to day on here and other forums, Its seems as if nothing is helping us, Im so scared Im going to be sick for years ,I have a family that needs me but I cant go on like this forever! Im trying toconsider jernigan, Its out of the question to get to the clinic so Im left with a at home protocol! I have a good LLMD,some would say one of the best but it even seems a once secure doctor about antibiotics is now not so sure ,maybe he is sure he is just waiting??? I have pos. Lyme and Babesia ,I thought antibiotics were urgent and now there not Im sitting around wanting to die when I really just want this bacteria to die! If I do start Jernigan do I stay on the vitamins and supplements Im already on? I mostly just take what BUrrascano suggest! OMG this is a nightmare and it dosent care who it attacks,Is my life over? Im soooooooo frustrated! 

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 10/5/2008 9:33 AM (GMT -7)   
Hi sickof lyme,
 
I'm so sorry you feel so bad, my heart goes out to you.  I once felt like you did, that I was not going to get any better and I was literally just waiting to die.   I had tried Doxy for 8 months, it didn't help.   I couldn't afford to see another LLMD so a friend mentioned Dr. Jernigan's 1st book and I bought it after 4 years of trying the Doxy.
 
I started his "healing at home" protocol since I could not afford to go to his clinic.  I wish I would have kept a log when I first started but I didn't, I guess I didn't think his protocol was going to work but it did.
 
I honestly don't know how long I have been better (no, I didn't keep a log) but I would guesstimate it's close to 3 years now.   I was almost too scared to admit to myself that I was symptom free for fear of jinxing myself.
 
Anyway, no, it's not hopeless!  I think Dr. Jernigan's protocol is fantastic if one sticks to it.  One really has to commit themselves to the heavy detoxing as well as not missing any doses of his botanicals.
 
Have you bought his new book?  I would suggest buying that first.   If you haven't bought it (it may be on back order right now), you can order it here:
 
 
Please don't give up hope okay?  I got better and I had lyme and ehrlichiosis (CDC positive) and have stayed better for a very long time.  
 
Think positive okay?  There are many here to support you and hold your hand through this.
 
Warmest,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking...
 
This song is about my years with chronic lyme and being in remission for over 2 years:
 

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/5/2008 9:46 AM (GMT -7)   

Hi sickof lyme.  I think we can all understand your feelings.  Your life is not over.  You can get better.  It can take time though, and it is not an easy process.

How long have you been sick?  How long have you been getting treated?

Having co-infections makes the symptoms of all infections more severe and can complicate treatment and progress.  Lyme disease can affect multiple systems of the body.  It is important to have your immune system function, your thyroid, adrenal, and hormone levels checked.  Has your doctor checked these?  If you need more information about this, let me know.

It is also important to do everything you can to strengthen your immune system--eat healthy, drink a lot of water, take appropriate supplements, exercise whenever possible, do things to detox.

What meds are you taking?  Is your doctor addressing the Babesiosis first?  It can be tricky to eradicate in some cases, but it can be done.   

It is important to learn as much as you can.  Knowledge is power.  Two books I recommend are "Everything You Need To Know about Lyme Disease Second Edition? by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.

Tick-borne illnesses are complex and treatment can also be complex.  But they can be treated.  Learning as much as possible and doing everything you can to help yourself gives you the tools you need.  Hang in there okay?  You are not alone.


sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/5/2008 10:18 AM (GMT -7)   
I have had fibro issues for 11 years then last year everything fell down on me ,with bunches of symptoms! I did start with doxy and recephin iv (3 wks ) all ins. would pay! and it made me much worse! I have alot of pain in my muscles. and was bed ridden most of the summer! Its preety much destroyed my marraige its hanging by a thread! but I have my kids to think about! I dont know if the LLMD is going to do antibiotics when I go back and know I dont know if I want too, it all is such a mess ,I dont know which way to go! I have read the Jernigans online book! and it makes sense ,dont kow if I could do the coffee enemas!! All I do is research and read about Lyme ,it seems to go in circles and like I said before it dosent seem like much is helping! This thing is so evil! Thanks for the responses it does help! THanks again

wacko woman
Regular Member


Date Joined Mar 2008
Total Posts : 182
   Posted 10/5/2008 3:24 PM (GMT -7)   
Lymes feels hopeless, but it cannot rob you of hope. Hope is something we get to choose to hold onto. Which of course is not something I believed when I was at my worst, but I now know it is true. Holding on thru the fear on some days is all that I could do. Don't fight the fearful thoughts. Then you become fearful about the fear and you are compounding all the negative energy. Just be with the fear, knowing that for the moment you are struggling. There is hope and you can get better.

You do not need to do coffee enemas. They are only one form of detoxing, there are many many others. I too was misdiagnosed with fibro (31 years ago). It wasn't until 4 years ago when I became so ill that a Dr. decided to test me for Lymes.

And it is hard when you have children to think of. As a parent we grieve over thinking that we are not being the parent that we want to be.

Lymes' isn't evil, it is just a bacteria. But the effects of it can be, and often are, devestating. I had severe brain damage from the ammonia of Lyme's and I am all too familiar of just how crazy one can feel. But I am proof that there is light at the end of that tunnel.

So for your sake, and the sake of your family, think about what one thing you can do. Focus only on that one thing and throw away (mentally) all that you cannot tackle right now. Just take one step, don't worry about the next one. You cannot know what will happen tomorrow, all you can manage is this moment because this moment is all that you have. You cannot go in circles if you take a step. One little step breaks the circle pattern. It doesn't matter what that step is, the thing is to take that step. Then you can take the next one (even if the next one is a different tactic than the first one). But when you take steps, you are moving forward.

So take a deep breath, keep posting here for the encouragement that you need, and find your one step forward.

We are all rooting for you.

Be Well,
Wacko Woman

sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/5/2008 4:20 PM (GMT -7)   
Thank you for all the kind replys on this post .I dont really know how Im going to make it through this, I pray something helps soon.I do appreciate you guys taking the time to write! Nobody understands unless theyve been there! Its a lonely lonely illness ,even when family is there They still dont get it!

Scooterscooter
Regular Member


Date Joined Sep 2008
Total Posts : 66
   Posted 10/5/2008 4:37 PM (GMT -7)   
You can check out the "healing at home" protocol with the free download. http://www.jnutra.com/healing.html

I am in the thick of things now with this disease. Please hang on. I've been through so many emotions it's exhausting. This is a place where you can find many who relate to what you are feeling. Take advantage of the opportunity.

My mental outlook is much better since reading and posting here. I am really grateful to come here and read all the information and connect with others who have been there, done that, AND got the t-shirt!

runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 10/6/2008 10:34 AM (GMT -7)   
Sickoflyme,

I am also totally sick of this illness. Been sick since 1997, misdiagnosed for 8 years and then finally diagnosed in Nov. 2005 with lyme,co-infections, viruses, etc...... Started IV's Jan 06 and have done orals on and off since then. Well....here I am still dealing with this BS!!! It is not fun, I understand. I wish I had the "magic" answer for you but I don't. What works for others does not work for some and so on....... The important thing is, as Wackowoman mentioned, is to keep moving forward, no matter how small of a step it is. As for me, I am stepping out of the box that I have been living in for 3 years and I'm going to see Dr. Jernigan. I leave this weekend. I am nervous, skeptical, so forth. I have no idea what to expect but I am trying to remain hopeful. I have to try something new because what I've been doing IS NOT working. So...back to the drawing board I go. Just know that you are not alone in your battle although it probably feels like you are most days. Hang in there and trust that the answer for you is out there somewhere.

-Runningirl

jginkc
Veteran Member


Date Joined Jan 2008
Total Posts : 692
   Posted 10/6/2008 12:04 PM (GMT -7)   
People get well. Since I have been on here since January I have read of several people on this website who have gone into remission and are feeling good. Dejavu and Wackowoman are only a few who got well and still come on here. It isn't surprising that once people feel great they move on.

I think everyone is different and what works for some won't work for others. I would highly recommend "Cure Unknown" because it shows many people who were critically ill and misdiagnosed and finally finding the right doctor and the right combination got well.

Jernigan works for some, Zhang works for some, antibiotics works for some -you have to explore all avenues.
Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.


snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 10/6/2008 8:31 PM (GMT -7)   
I have made big gains with Zhang and will start Biaxin very soon...maybe even Rifampin for 3 months on top of HH. If you read about the HH and Garlic in other articles...it is amazing the effects of both herbs.


Jginkc - How many AI#3 were you taking? It has been verified from a Dr in TN that I have Vasculitis and we are going to really try and stop it. That is what is causing my vein problems. Did you some people are on Prednisone for years to stop the Vasculitis?

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 10/7/2008 3:00 AM (GMT -7)   
Sickoflyme, please don't give up!! I've felt like giving up at times, but hung in there and I'm happy I did. I'm still sick, but I'm so much better than when I started.

There are other at home protocols you can look into in addition to Jernigans. There is the Zhang protocol that Snake mentioned. Also the Cowden herbals and Rife machines.

My sister used the Cowden herbs last summer. They were effective, but they are expensive. I have been using a Dan T. Rife machine since mid July with some sucess, although it's too early to tell how I will do with it in the long run. I have met others in Michigan and elsewhere who have done very well with the rife machines.

My machine was hand made by DT and was very inexpensive. If I don't achieve the success I want with this machine, I will try the Zhang herbals next. I was on abx for a year and a half, but didn't care for the side effects and was worried about the long term effects.

Take care,
Dar

thebeav
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/7/2008 3:53 AM (GMT -7)   
sickoflyme,

I can relate to your frustration. My most severe symptoms started in Jan 08 and it took until May 08 (5 doctors later) to get diagnosed with Lyme. Looking back I think my first symptoms started about 5 years ago. I started on doxicycline and at first I thought it was going to kill it, but after about 2 month it stopped working and it all came back. Ive been on IV Rocephin about 2 mos. now and although it seems to be helping I know I still have a long way to go... will it ever end? Just going round and round with the insurance company is enough to make you want to die... not to mention co-workers and friends don't see the severity of the illness they just think it's all in your head. I had to see a LLMD and have Igenex test to get positive diagnosis. I'm concerned about the lesions on my brain and if some of my symptoms are a result of that, and if so, will they eventually heal? I'm concerned too about being on antibiotics long term, my LLMD suggested a while back the hyperbaric chamber but I hear it's expensive. Between the dr. visits, supplements, iv supplies (I now have to pay out of my own pocket) it won't be long and I'll prob. be bankrupt. This whole thing has turned my life upside down. We're expecting a baby in a couple weeks and I have serious doubts about my ability to keep earning money and being able to be the father to this baby boy. Can anyone tell me about this "Rife" machine, I've never heard of it. sickoflyme you're not alone, I can't believe how many people are affected by this, seems like an epidemic to me. I'm glad I came across this forum, I haven't had a place or anyone to vent to.
Hang in there sickoflyme - we're all in this together!
Thanks,
Darin

sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/7/2008 8:44 AM (GMT -7)   
I wish so much that any people that get well would stay on these message boards! I appreciate the veterans that have stayed here with us! There is alot of days where Im sure IM not the only one ..I just cry several times a day and just wish I was dead instead of going through this pain and fatigue day after day after day! My kids keep me going even though they really dont understand why some days Im o.k and some days Im not .The truth is Im never o.k but I try to pretend so they wont always remember me as sick!! All this stuff is expensive such as RIfe and HYberbaric chamber,infrared sauna! My wish is the goverment would make the insurance comanies pay for whatever it takes to make us at least comfortable if we cant be 100%! I did buy the Jernigan book! and am going back to my LLMD on the 10th Dr.J in s.c., yes he knows alot about it but Im not so sure which way to go ,I guess I just try one thing at a time, I am hoping he will start addressing my Babesia ,I may try antibiotics for that and then go natural for the actual Lyme, Im not sure if Jernigan would get rid of the Babesia! Has anyone tested Negative through IGENEX, im wondering if we can even trust them ,seems like everone who goes through IGENEX has some kind of positive????

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 10/7/2008 6:32 PM (GMT -7)   
Hi there sickoflyme. I'm sorry you are feeling so down about this dd. I remember being in the same place a year and a half ago. It really sucks.

But I just wanted to mention that my rife machine costs less than what my sister paid for one month of her cowden protocol. It's not expensive if you buy a hand made machine, or if you know someone who can make one for you.

I hope that you can get through the difficult parts fast and at least start to feel some relief.

Babesia is not treated with abx, but with a anti parasite drug that I can't remember right now. I use my rife for lyme and all my coinfections.

Many have tested negative with igenex for coinfections, but LLMD's still treat based on symptoms. The coinfection testing is even more unreliable than the lyme testing.

The rumor that no one test negative through igenex is not true. I personally know of many who have tested negative. I trust my ignenex results, but I have to say that I questioned them at first too.

take care,
dar

trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/7/2008 10:05 PM (GMT -7)   
my igenex wb & babs test were both neg, but 4 days into my babs treatment -zithro & mepron- I herxed like never before! I had to stop bc it almost killed me.

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron


sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/11/2008 10:27 AM (GMT -7)   
Well Dr. J in S.c. wants to start a picc line with clindamyacin and Zithromax along with oral Mepron and Artisimin! His patients are getting better so I will try this and see should be about 4 months if my insurance pays for it!He is one of the best ,so I will follow this road for awhile ,and not sure about doing Jernigan with all these other antibiotics! Let ya know if I have any luck ,He only does the Iv 3 days on then 4 days off with fluid bag on the days off ,he has found it makes the herxs better

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 10/11/2008 10:39 AM (GMT -7)   
Good Luck sickoflyme. It sounds like you are in good hands. I would recommend not doing jernigans at the same time as the IV abx. You could always add those later.

Take care,
dar

maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 10/15/2008 5:27 PM (GMT -7)   

Hey sick of lyme,

You mentioned hearing from those who had lymes and went to recovery.  I was biten in 1988, dx in 1993, tx was doxy for 8 years then I was done.  Was it easy, as we all know ... NO WAY!  But you just do it.  To be in tx was so very different then without the chat rooms and support systems.  

My lymes had spread into my spinal fluid and messed with my frontal lobe of my brain.  After tx began and time wained on, I was able to go through rehab and learn how to read again and slowly started getting my senses back.   It took years to recover.  Do I look back and say boy I'm glad I went through that, NO.  But it's what I was handed and like it or not, I had to give it my best.

Here I am today giving it my best again.  20 years ofter the bite i'm recently dx with babesia, i started my Mepron today.  I wanted to reach out to others for their support and learn a thing or 2 while I'm here. There is so little I know about babesia but feel like my lymes info might help me wade through all this muck.

Hang in there, this looks like a great place for support, information and words of encouragement.

maggie


sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 10/15/2008 5:37 PM (GMT -7)   
Thanks for your reply, you
 might want to get the book Babesia by Dr. Schaller, it has all the info you would ever need to know! I dont know if you know already but the herb Artesimin is used with Mepron to help with Babesia it is very well known for treating Malaria which is like Babesia! My doctor wants me to do those two together for my Bab. but of course two other for my Lyme! You only were on Doxy for 8 years ,I wonder why your doc didnt do other antibiotics,just guessing you would have gotten better more quickly, but then again were all different! Hope they find a cure soon..too much suffering !

wacko woman
Regular Member


Date Joined Mar 2008
Total Posts : 182
   Posted 10/16/2008 4:16 PM (GMT -7)   
sickof lyme,

I am hoping this new protocol you are starting will be your answer. You have taken a step forward which means that you are no longer going in circles. Wishing you only the best...

Be Well,
Wacko Woman
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