Losing My Mind

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madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/15/2010 10:11 PM (GMT -7)   
I've been sick since October 2007. It took 31 doctors to finally get "help," even though the help has not actually helped much! I have made progress, but how much does it matter when I'm still too sick to leave my apartment?

I'm in a lot of pain at the moment and want to say I'm VERY happy to have found this forum - I live in a very rural state and have been wanting to network with others for a long time but couldn't find any active (and easy to use) forums with more than a handful of members. So...YAY!

I have a great doctor but worry constantly about the political controversy going on and if this will eventually effect my own treatment. My doctor is THE ONE in my state and I don't know what I'd do without him.

I have an entire bathroom shelf of leftover bottles of antibiotics that I wasn't able to tolerate. Each time I begin a new one, I'm in the hospital within two weeks. I was able to make it through the herxing on Augmentin, and stayed on that for over a year, but when I started having neurological problems at night, my doctor insisted on switching me. I began a minuscule dose of Minocyclin (half a capsule every other day) and was covered in a rash, hives, bumps, lumps, and nodules...entire body swollen and horrible pain...hence, the doctor said I'm just too sensitive right now for any more antibiotics and I'm currently waiting to receive a natural tincture. Natural treatments seem like a huge joke when you're so sick you feel like you're dying.

My biggest symptoms have been joint/muscle/bone pain, in particular my ribs, soles of feet, toes, hips, chest, and fingers. I am often so tender it hurts to be touched and my skin is extremely sensitive in the painful areas. I get migraines that last days and each time I don't know how I'll ever make it through. I have a few swollen lymph nodes, the biggest being on the side of my neck. I often feel like I'm in a fog. I can't sleep at night. I've come a LONG way from the days when I couldn't walk on my own and didn't know whether to sit down, stand up, lay down, or kill myself...yet I'm still in terrible shape. It's hard to see a light at the end of the tunnel when I feel like my life has been ruined for so long...and how will I ever get better if I need a high dose of antibiotics, yet can't even tolerate a small dose?

I would love to find some people to network with, share stories, insight, and hope with...

Thanks for listening and I hope you all are having a great night,

Rachel

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 8/16/2010 3:39 AM (GMT -7)   
Hi madrivergirl,
 
Welcome!  I'm really sorry you are sick and believe me, I know about seeing lots of doctors, I went from one doctor to another for 5 years trying to find out what was wrong with me, it was so frustrating so say the least!
 
After I had darkfield microscopy done and watched my own spirochetes on the monitor, I was tested by IgeneX and sure enough had lyme and ehrlichiosis after being tested by Labcorp and Quest during those 5 years.    Doctor gave me 6 months of Doxy and afterward I felt terrible.   Then I thought to myself "does it make sense to put poisons in my body to go after the lyme poisons?"...  
 
So I tried all different types of alternative medicine including silver, nutramedix samento, etc.  I didn't feel better.  Then I learned about Dr. Jernigan and bought his book (this was his first book, not his revised book which is available).
 
I followed his "healing at home" protocol and today I have been symptom-free for over 4 years.  I learned much about lyme disease as this disease fascinates me for various reasons, I have learned that detoxing is essential (even for the most healthiest of people) because we live in a toxic world.  Prior to getting infected with lyme, I never heard of detoxing before, duh!
 
Anyway, it sounds to me like you are most definitely allergic to antibiotics and Dr. J. does not believe a person should have to suffer from herxing.  
 
What is herxing really?  You see, lyme bacteria dies off either naturally or by using medicines and that produces toxins.  So it's the toxins that make a person feel bad, not the bacteria.
 
I suggest you read these 2 articles below and also buy Dr. Jernigan's book so you can learn about this disease and know you have options.   Once again, there is no reason for you or anyone else to suffer while trying to get better.  
 
 
The article below is about toxins:
 
If you are interesting in reading Dr. J's book, it can be bought here:
 
 
 
I hope this helps as the more knowledge one has the better.
 
Hope you feel better!
Denise

It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/16/2010 8:53 AM (GMT -7)   
Wow, thanks for your message, Denise. It's always SO good to hear about people who actually did recover, especially after being sick for so long. A lot of the stories I read online are people who have been sick for sometimes 20 years and it's very discouraging.

I have had several Lyme tests done, including probably at least three Western blots (one through IgeneX with my current LLMD)...all were negative, but two Western blots showed one or two positive bands (not enough for a "formal"/CDC diagnosis...which was one reason my doctor was actually "glad" I had such a severe herx this last time... Along with all of the symptoms, some very specific to Lyme, the continuous Herxes to each medication cleared any doubt. I am desperate to some day have a clearly positive test result in my hands though...because I'm desperate for validation from all those previous doctors who either turned me away, didn't care, didn't believe me, thought it was "all in my head," or just gave up on me because they didn't know what else to do. If any of them had really taken a look at how much I'd lost (after having a VERY stable life, same job in state government for six years, finishing my last semester for my bachelor's degree in pre-law, etc.), and all of the invasive tests I put myself through to rule everything out, I don't know how any of them could have concluded there WASN'T something wrong! This is where the anger and infuriation comes from!!!

Like you, the hospital assumed I had an allergic reaction to the latest antibiotic, but I had taken it before and had a completely different set of Herx symptoms...and my LLMD said an allergic reaction causes a rash, NOT severe pain to the point where you are bed-bound. I had no choice but to take a round of steroids, which really screwed me up even more.

I actually took two rounds of Doxycycline - that was the first antibiotic I was given, by both my primary care physician and another LLMD. It left a horrible taste in my mouth (literally)...like hot garbage...and was intolerable! Had I known what a hard time I would have finding something else I could physically tolerate, I may have stuck it out. I also tried Samento and it caused the same awful Herx reaction t the point where I couldn't take it anymore. I constantly feel like I either have to deal with chronic pain and Lyme symptoms or Herx reactions from treatment...and when you feel like you really can't do either, what do you do? I have heard of Silver but the little research I did on it left me with a negative opinion about it...I've never actually talked to someone who tried it.

I have read quite a lot and heard quite a lot about Herxing - I have to say I REALLY like and trust my doctor. He's so smart and seems incredibly up-to-date on Lyme and therapies, including natural options; however, I've never heard anyone with the opinion that Herxing would be optional. I know it's the process of too much bacteria dying at once and the body not being able to rid itself of toxins... What I've usually been told is something to the effect of "we need to find the right dosage or balance so that we know it's working but it's not too much to handle..." and I think my doctor views a Herx reaction as a "healthy" sign that the treatment is working, but at the same time doesn't expect (nor want) it to be too severe to handle. I guess I just don't understand how one would recover without going through this process...if that makes sense! The bacteria is there, and needs to die off...and it's not like I was attacking it with crazy doses (I was taking the lowest possible to begin with).

I will definitely read the articles you sent - I have read some on detoxing and actually have a great book on similar ideas and theories. Maybe I'll understand more after reading more about it...

Thanks again!

Rachel

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/16/2010 1:12 PM (GMT -7)   
Hi Madrivergirl!!!
Welcome to our forum!!! I'm really sorry you have had to go through all of that. I'm sure you will find caring, compassionate, friendly people here. Please don't take offense at what Deejavu said - we just believe in detoxing. We have seen enough evidence & read enough from Lyme Researchers about the need to detox. No one HAS to detox, we just feel that once you get started detoxing you will experience a lot less suffering. Although I do not disagree with what your doc says - it is a healthy sign, but there is no need to suffer any more than you have to with this insidious disease. The Townsend Letter is also packed full of really good info as well - all you would need to do is to "Goggle" Townsend Letter.

I also live in a very rural area!! Any one here that really needs to see a LLMD, will have to travel over 500 miles - one way - to get to one, as there is not even one LLMD in my state! I have not been well enough to go see a LLMD, but just happened upon an Acupuncture Doctor who is also a Master Herbalist & a student of Traditional & Modern Chinese Medicine. I have had some very good results from this form of treatment so far. I turned to this gal because of the ignorance of the Western Medical Docs when it comes to chronic TBI's in my part of the state.

I would like to heartily suggest that you read as much as you can about LD & the other tick-borne infections. The more you know, the better off you will be - especially if "they" manage to close down the one & only LD doc near you.

Since you are so sensitive to the abx, maybe you should look into other options?? No matter what form of treatment you chose, we are happy to have you here!!
I wish you peace along your journey to health...
Trav
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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