posted 29 October 2004 13:12               

VERY SPECIAL THANKS to all who have shared their wonderful stories!

Your inspiration is priceless

posted 24 November 2004 18:45            

One was treated fairly soon with doxy & says is cured. I kind of wonder about that one.

The other had lyme for 3 years and nuerological involvement. She did only 28 days rocephin and feels she was cured. I beleive her. She's been sx free for I forget how many years.

posted 05 December 2004 04:35            

I would really like to give back to all or any of you that may have questions about the regimen that I felt finally helped me.

I was one of those chronic Lyme cases that was diagnosed SO late (28 years late) that my LLMD put me on IV rocephin for 8 months.

This killed the migraines but it "might" have increased my candida problems. Then, for the next year I was on ceftin, zithromax plaquenil and doryx (not at the same time).

I couldn't stomach biaxin AT ALL and until I got the candida under control through diet and probiotics, I couldn't stomach the zithro.

I think the abx played a huge role in killing the majority of the keets, however, I truly feel that I started turning the corner when I started alternative therapy.

This included joining a program called AIM (which I'm still on...please do a search under my name for "can't hurt&might help" title where I wrote in detail about the program when I began it last year).

The second thing I started using was something called Master's Miracle de-tox products. I took long baths in this ph balancing soap/neutralizer every day. That helped tremendously.

At that point (last October), I was off ALL abx and trying to conquer the horrific candida symptoms. I used diflucan, nystatin, florastore, bifidus but my gut was clearly still in bad shape.

I also struggled with mild headaches, fatigue, tremors and nausea.

My LLMD told me about a product called Primal Defense (made by a company called Garden of Life). I noticed some slow improvement and so invested in some of their other products:

1) fungal defense
2) Perfect Food (green food powder or pills) that equal up to 5-10 servings of the important raw veggies you need to kill the candida
3)living multi-vitamin

On a comical note, I ended up meeting a guy (thru internet dating) and he worked for this company. We were not a match but he brought me a whole box of their products after I told him about my struggles with Lyme and my belief in the products.

Scarily enough, I was more psyched to have all of these free vitamins/supplements than to have a second date!

Anyway, I just want to give hope to the newcomers and people still struggling. There is a light at the end of the tunnel.

I think different protocols work for different people but I want you all to know that I'm living a healthy happy life and it is possible to get this wretched demon out of your bodies!

I'm starting a new job on January 3rd. I exercise 3-5 times a week. I sleep soundly through the night. My obsessive compulsive issues are down to the bare minimum.

The only remaining lingering symptom is an occasional pop in my jaw when I open my mouth really wide. I was fitted for a night guard so, hopefully, that will alleviate that problem.

Do I believe there's some keets still lingering in my body? Absolutely. The difference is, though, they're not having a party. They're sitting in the corner wearing a dunce cap.

If anyone would like to contact me directly with questions, or even just to vent, chat or cry, you can contact me at SusanSouthy@aol.com.

I want to be strong for all of you the way you were strong for me.

With love & hope,

Susan

posted 02 January 2005 21:15            

My husband and I were beginning to wonder if anyone ever actually got "well".

posted 05 January 2005 20:52               

Thought these belonged here also.....they were encouraging to me.

posted 15 February 2005 17:16               

I feel like I am heading in the right direction but not there yet...........

robi

posted 16 February 2005 18:07            

My grandparents have 2 friends who had lyme for years(don't know how many) and they are now completely symptom free.(I'll ask about their treatment,syptoms & post back here.)

posted 26 April 2005 01:40               

Okay, disclaimer: I'm not 100% and never will be now, 'cause I ended up with Parkinson's - for real, not a misdiagnosis. So far it's only got my right hand a bit... so I can't lightning-edit/repost/riposte like I did here in my heyday and Lyme-nadir. But if I only use my left hand, I can type about as fast as many can with both

Now the goodness: it's been a long time since I had abx. Long time since Lyme symptoms. How long? I don't remember, that's how long!

Okay, okay... lemme look it up here... oops - bad Lymie! Poor recordkeeping... musta been brain fog. Well, it sez here that the P diagnosis was in June last year, and that was after all the 'normal' Lyme stuff (for me) was done... so I reckon it's been a year or so.

Heck, I thought it was a year in January! Just goes to show... when they diagnosed Parkinson's, they figured they better check in on my brain - so I got to spend a day with a very nice man doing Cognitive Testing. That was fun! Well he was a little concerned because I tested "superior" (to what?) in all his little boxes except one... but I don't rememb... oh yeah, it was "short-term memory". And after that we went a little bit farther down the trail, and there was another one! Except this one was white, not purple like all the rest.

And that's what I did on my summer vacation. Yes, that's how I got up there.

Butt seriously, folks, I'm well and cognizant and very, very active... and getting more so each week.

Now if y'all wanna hear how I got well, somebody try to find my post wherein I explained that. okay? Test out the search function... I'm all out of time, I have a report to finish tonight for pay. If nobody finds the post and someone wants the data, somebody email me... by then I'll have spare time and will either find it or re-invent it again.

Happiness and wellness to you all, especially re-ticked Tutu and TinTin and the rest of the old gang who knew me when I was just a keyboard spirit.

Dan

posted 26 April 2005 04:39               

Congrats to your good health!!!

I wonder if you have seen this or might be interested:
http://news.bbc.co.uk/2/hi/health/4051951.stm

Take care,

posted 20 July 2005 22:08               

I had Lyme almost 17 years undiagnosed, along with erlichiosis and bartonella. Were not a pretty sight, as described in previous post. Life pretty well shot, and so was I.

I was so sick that we eased into abx slowly so I wouldn't herx too badly. Gradually worked up to the full combo. Also took a several Chinese herbs, which helped immensely with managing symptoms and herxes.

First round was 16 months. Took time for infection to do its damage and weasel into the recesses of my body; took time for abx to do their job too. I got well enough that I went off abx. Off ten months, then had a minor relapse, aggravated by stess (bought fixer house). I was no where near as bad as before, but enough to know I needed to go back on abx.

Ten more months, a different combo this time, and I was doing so much better I couldn't beleive the difference. I am probably more active than most people my age.

Dr said that it is possible I could relapse again, but that each time I am treated, the time will be shorter, my immune system gets stronger and my functional level gets higher.

It worked: some things improved rapidly, some have taken longer. Abx gave my body chance to begin to heal on its own. I am doing professional level work again part-time(I am a field scientist). I can hike mountain trails for miles and still cook a meal and tend to the house and animals when I get home. I not only read novels and technical articles, I write and it actually makes sense. I go out with friends or family. I go to a conference once in a while, and the occasional concert.

I still have some things I have to deal with: a little tinnitus, and hyperacusis is still an issue, but it is nowhere as bad as it was, and is still improving. Klonopin and earplugs helps with what is left. I am careful not to get overtired, but hey, that is just good common sense for anybody, especially my age (62).

When I was finally diagnosed, I determined I'd do whatever it took to get well. Won't call myself cured, but I do consider myself "well". It was worth the effort, every pill, every herx, the effort of physical therapy to regain strength and function.

Got a great photo of me standing at the top of a mountain in hiking boots and a hard hat. Never thought that would happen again. Next is the kayak...

posted 14 August 2005 06:47               

My life had never been particularly difficult. In fact I often felt guilty that others appeared to be struggling so ,while for the most part, I seemed to sail smoothly along. Of course I had my little ups and downs but never really experienced the tragic in life.

About 17 years ago, as I was driving to work one day, I vividly remember a conversation I had with God. Dear God , I said, I am truely grateful for all the good in my life but I feel as if I am spiritually stagnant, not growing, learning and helping others the way I feel I should be. So...if I need an experience to help me evolve and grow, please....just don't make it too difficult to bear. Looking back, I can't believe I was saying this! Little did I know what I was about to experience.

As the year progressed, I gradually began to acquire odd unexplainable symptoms, such as tingling and numbness in various parts of my body, lower back pain, headaches, stiff and painful finger joints and fluctuating anxiety. I remember visiting our general practioner for tingling and numbness in my arms and hands. Without testing of any sort I was handed valium. Of course, the valium did not help.

During this time I was working in the cafeteria where my small children attended school. This worked out well as I had the same schedule as my children. When school let out for the summer that year, we looked forward to our traditional activities....camping and boating. I will never forget the camping trip where my life was changed forever. One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic....for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone...not even my worst enemy.

In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding ( even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden. I made an appointment with our family doctor and was given three weeks of antibiotics...just to be sure.....in case I had Lyme Disease. This was around 1989. They did not test me for Lyme at this point. I was told that it would be too early to show accurate results. It was assumed that if I did have lyme that it must be from a recent bite. However, I feel the illness had been simmering in my body for quite some time. The treatment did not seem to touch my symptoms at all and in fact, I felt worse. The panic/anxiety became so intense that I was prescribed tranquilizers.

For several months, when I was at my lowest point, I was unable to care for myself or my children so we temporarily moved in with my husband's parents while my husband stayed at our home to continue working. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time. That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing obviously wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.

When summer came to a close, it was time to return to work at the school. I was barely able to function but wanted to press on for fear that if I gave up and quit that my life would be over. At least this way, I thought I could keep up some sort of normalcy. My coworkers were not very understanding.....to say the least. At times I was so lightheaded and weak that I would immediately have to lie down on the cement floor in the stockroom to get the blood flow back to my head. With me, it wasn't a matter of sleepiness but a simple inability to stay upright for very long. The women I worked with would say to me...."well , we get tired too sometimes you know, but we don't have to lie down!"

Time went by ,as I struggled every day to function, and I was diagnosed with Chronic Fatigue Syndrome. Even though there was no cure, it felt good to have some diagnoses besides depression. I knew something was seriously wrong with me and that it wasn't just "all in my head". Actually, most of it was in my head, but in an organic way...not psychologically. Every couple of weeks a strange new neurological symptom would add itself to the others already in my repertoire.

One of the most difficult parts was that most people just did not understand. How can anyone be so sick for so long while the doctors can't find any concrete cause? I can't blame them really. One has to have had this disease to appreciate the full implications of it's diabolical fluctuating nature. Because I didn't want people to feel that I was lazy or mentally ill, I set out to prove that I was really and truely organically sick. This drive led me to begin researching the vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my research to my doctors, hoping desperately that they would take an interest. My family doctor was very supportive but all the specialists I was sent to told me to accept my diagnosis, that I was depressed and why was I doing all this researching? The doctors would tell me that diabetics for instance...they accept their disease and get on with their life so why couldn't I do the same. My neurologist told me that I should stop all the researching because I wouldn't want her to get the wrong idea and that other doctors would also get the wrong idea about me. She was insinuating that I was crazy. I went home that day in tears. No one who is sick should have to be treated this way. Many patients with vague diagnoses , such as CFS and Fibromyalgia, often express the idea that they almost wished they had cancer so they would be taken seriously. Some have even expressed the thought that at least with cancer , many die and get it over with.

After 8 years of having "Chronic Fatigue Syndrome", my research led me to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely similar and decided I wanted to check this out. I made an appointment with a lyme literate doctor and began my still ongoing recovery. I was tested for Lyme Disease by this doctor but the results were negative. However, I was treated anyway based on my history, symptoms and the fact that I lived in a very endemic area. At first my symptoms became worse, as I was warned. I was told that this was a good sign and meant that the antibiotics were hitting the target. I was on a high dose of oral doxycycline and it took four months before I even began to see any improvement and then finally, little by little, some of my symptoms began to fade away. It was a very slow process with many setbacks and flares....but each month these cycles of flares would be reduced in severity. I learned that the setbacks and cycles were almost always temporary. I would often tell myself not to worry when an old scary symptom would reappear. Usually in three to four days the particular symptom would disappear and another one would take it's place. Again, in my experience, each month the symptom cycles were less and less severe.

After 4 months of antibiotic treatment, I was retested and was now positive. The explanation I was given for this, which makes sense to me.....is that those who are the sickest, most likely have the heaviest load of the lyme bacteria. Many times all of one's antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed off, this frees up some of the antibodies which can now be measured. So...in other words....it is often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.

Two years ago I had to switch to another doctor who specialized in Lyme Disease. I was begining to slip backwards because of breaks in treatment. I had never really been on consistent long term treatment. This new doctor had me tested with the Bowen test and I tested positive for Lyme and Babesia. Now that I am finally being treated consistently for the lyme and the first time for Babesia, I feel as though I have my life back.

During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.

As my thinking became clearer with treatment, my feelings of spirituality gradually began to reappear. I spent more and more time reading inspirational books. I wasn't trying to be healed nor was I asking or seeking anything else material or specific. I just wanted to feel and be aware of the presence of Spirit or God. I wanted the joy and love and goodness I was recieving from God to flow through me and envelope those around me. As I focused in this way, I felt as if I have emerged from an egg into a new world of excitement, happiness, joy and love. So many wondeful people have crossed paths with me and for this I will be eternally grateful.

Intuition seems to have increased, synchronicity abounds and everyone I come into contact with is trying to serve humanity in their own special way. I have improved a great deal and seem to have aquired new abilities that I had never even dreamed of. It's like watching a play unfold....a good play. I now feel as if I have a purpose in life. The thought of growing older and losing vitality now never crosses my mind. I am finding just the opposite to be true. Not that I will now be free of all problems nor am I totally cured but this illness has brought me to a point where I appreciate life and those around me...so much more. While I personally don't believe that God sends evil or trials to us, I think our experiences reflect the degree to which we try to abide in Spirit. We all have a desire to know God and to feel God's love so perhaps when we are focused on the wrong things something inside us creates circumstances to head us in the right direction. So, despite the fact that I still have memory and organizational problems and the world seems to be falling apart around us, I am experiencing a more consistent joy and assurance that in reality God is on the scene but that our real need is to open our awareness to this fact.

Lyme can be a devastating disease but there is always hope....especially when we look for it in the right places. I am sensing...along with a growing number of others, that despite what the media is telling us....more and more people are coming together in the spirit of love and cooperation. This spirit of love is the only thing that will truely heal our lives and the world. While, as many of you know, I feel we need to expose the corruption which is seemingly taking place all around us.... it musn't be with a sense of hate, fear or revenge.

I can actually say, even though the lyme journey has been a very difficult struggle, that if I could, I wouldn't want to change a thing. I feel that the Lyme experience has brought me to a whole new place....one of wonder and amazement.

posted 15 August 2005 15:04               

Thank you!!

posted 17 August 2005 21:50               

Mind you, this is a little boy who was diagnosed with autism, a hopeless 'genetic' disease almost 5 years ago. He's a perfectly normal little boy and you'd never know today he was ever sick, let alone autistic.

What a blessing. My heart is bursting with gratitude for all of you here on lymenet. Thank you so much for your support over this past year.

I'll still be around . . . for a while, anyway.

One Year Ago
Here is my initial post on lymenet about our son, immediately following his lyme disease diagnosis. Very much worth reading, especially if you have sick little ones!

posted 23 August 2005 08:38               

Author Topic: Good News! I see the end of the tunnel and it's bright!
Aniek
Frequent Contributor
Posts: 1253
From: Washington, DC
Registered: Mar 2004
posted 22 August 2005 16:10
--------------------------------------------------------------------------------
I thought I would share the very, very good news that I appear to have beaten this thing! My symptoms are greatly reduced, I feel healthy, have energy, and just gosh darnit feel good!
Many of you may think of me as a walking advertisement for the muscle relaxer Flexeril. I've been on 30mg a day for about 18 months. Like a bad patient, I noticed my prescription would run out before my next visit. So I decided to take a test and I started to wean myself off the Flexeril.

I'm now down to 10mg and I don't have any increased pain or stiffness. In the past, I've noticed increased pain within 48 hours of going down to 20mg.

The infections I have battled are Lyme, Babesia and Salmonella. Interestingly, the salmonella appeared gone only to reemerge after treating the babs. Salmonella can cause a reactive arthritis.

I've moved through a number of protocols including:
Penicillin
Amoxycillin, Biaxin and Plaquenil
Augmentin, Biaxin and Plaquenil
Augmentin, Levaquin and Plaquenil
Ketek, Artemisinin and Plaquenil
Ketek, Amoxycillin and Plaquenil

Also had Diflucan, Synthroid, Acyclovir (Anti-Viral), Flexeril and most of the treatment. Added Prevacid a few months ago for heartburn.