Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
First, I would like to thank you for answering my questions in the past and thank you for selflessly helping out others as well. �Most others who get well would, more likely than not, have not bothered coming back. �You on the other hand, must have been humbled by your experience (as I know some of us are) and realize the importance and the severity of our cause and the importance of vindication on many levels.
Lyme disease is not just about Borrelia Burdorferi, but it is a lesson in life. �It teaches us just how little we know and that we are not the conquerors of our environment as we might have imagined. �It teaches us how fragile our health is and how easily it can be taken away. �It's not just about us being sick, but the countless that must have ultimately died unknowingly throughout the years. �The ones who have suffered and continue to suffer with a mere label attached to their affliction, while for others no answers at all.
We have become disappointed at our officials and medical community and it has opened our eyes up to the conflict of interest. �With today's technology and with information at our fingertips, one needs to only listen. �This shouldn't be a difficult task to ask of our professionals, but apparently if you are not directly impacted by this disease it is.
I find your case to be fascinating. �You had gone years before being diagnosed, were at what appears your death bed, struggled through treatment, and made it with a willingness to share with us. �I have many more questions but will ask only a few at a time, rather then to overwhelm you. �There are many things that can be learned from your experience.
From what you have described the 2 year of Amoxi with Probenecid put most of your Lyme symptoms at bay and converted most of BB to cyst form. �
Do you have a list of your symptoms before treatment? �How long did it take with the Amoxi and Probenecid alone before you saw 90% improvement?
Once you stopped the Amoxi what percentage did you slide back and did you experience a majority of your symptoms return?
[ 04-27-2012, 02:41 PM: Message edited by: Lymedin2010 ]
Posts: 2087 | From NY | Registered: Oct 2011
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Just want to second your kind words to tf lymed. Very eloquently written.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
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Member # 14183
posted
Thank you for your kind words.
I am happy to share what it was like for me when I had lyme so many years ago now. I do it because I believe it will give others hope as they struggle with this horrendous disease.
I was very, very sick with this disease. And, I was sick for a very long time before a doctor figured out what was wrong with me. I basically had no life for the last 5 years before my diagnosis.
I will give you my symptoms in paragraph form. Just know that I spent 2 years on just high dose amoxi and probenecid. (Lousy lyme treatment.)
That helped me, but I wouldn't call it 90%. I still had extreme muscle weakness, false menopause, trouble sleeping, dry eyes and mouth, and some other symptoms. AND, I developed a new symptom near the end of that 2 years--trigeminal neuralgia.
This was extremely unbearable. You can go crazy with trigeminal neurlagia. As you will read in my story, Burrascano said that this was a sign that my disease was progressing. This is what led me to switch to a Burrascano doctor--my final lyme doctor.
The new doc stopped my amoxi only for 1 week. That was to bring the lyme out of the cysts. Then, I went back on amoxi (with probinecid) and flagyl. That's how I got rid of lyme. It only took 2 months.
When I got rid of lyme, then I truly was about 90% improved. Then, I got rid of bart and babs--the remaining 10%. That took 11 more months.
So, here is a write-up of my symptoms and what life was like for me:
I was very sick for 5 years, constantly going from doc to doc to find one who could figure out what was wrong with me. Before the constant sickness, I had at least 5 years of episodic sickness, or maybe 10 years. It was strange. I would get this horrendous muscle weakness that meant I could not stand up for more than a few minutes, could not walk for more than a few minutes, etc.
Each time this would happen, I would seek out a doctor. Then, as suddenly as the thing came, it would go. I would wake up one day and the "episode" was over. The first few times this happened, I just hoped that it would never happen again. But it kept happening. The 5 years of episodic illness consisted of 7 months of illness followed by about 5 months of feeling normal. I never could go for a year or anywhere near a year without an episode.
When the 5 years of continual sickness started, it meant I had the horrendous muscle weakenss 24/7 and never any breaks. The new symptoms there were a false menopause (which was diagnosed as menopause by many gyns), unbelievable fatigue (fatigue is not a good enough word for it) and some horrendous symptoms that went along with lyme attacking me gynecologically.
I had extreme vaginal atrophy which means I could not stand any clothing to touch my crotch--not pantyhose, not jeans, not any pants. I could not wear any of these types of clothes due to the irritation/pain it would cause me in the crotch. I could just wear skirts.
I could not cross my legs without immediate pain due to dryness. And, even the little walking I did caused irritation by the end of the day.
It was like my sexual response button was turned to "off." Sex no longer made sense to my body or brain. It was very strange.
All gyns said that my ovaries were quite small. So, lyme shrunk them and stopped them from producing all sex hormones. I was low on them all. I had to take estrogen, progesterone and testosterone.
The nonexistent estrogen level is what caused the severe vaginal atrophy. All of this shows you the power of lyme when it attacks a bodily system.
My eyes dried out terribly. I had to see an eye doctor for this. The continual irritation was painful. The eye doctor wanted to put plugs in the drains in my eyes so that I could keep in the little moisture that I still had.
My mouth dried out terribly. I had to be treated by my dentist for this. It caused horrible bad breath, affected tooth health, and made it difficult to go to sleep at night--your tongue is sticking to the roof of your mouth. You want water or something to sooth the dryness.
So, basically, lyme dried up all of my mucous membranes.
I carried a bottle of water with me at all times to sip on for relief. I remember carrying it into my lyme doctor appts.
I had facial drooping which made me look like I was scowling. (Deep lines on either side of the mouth.) Since I was told I was in menopause, I thought that this was me looking older. It felt like gravity was pulling my face down. (I now know that this was a mild bilateral bells palsy.)
It was so bad looking that I considered getting a face lift. My husband agreed to it. Then, after having this for 3 years, one day I woke up and my face was normal!! No more drooping. Just one of many mysteries that got solved when I got my lyme diagnosis.
My muscles were so weak that I could not hold my mouth open to have my teeth cleaned, hold the phone to talk on it (for more than 30 seconds, I timed it). I dreaded having to rise up from a chair or step up a curb because this was so difficult (having to lift my body weight). My legs shook like jello walking down stairs. If I did a deep knee bend, I could barely get up.
I had to rest twice while getting ready for work in the morning--arms and legs got too weak to continue. Couldn't hold my arms up to style my hair. This getting ready got me so exhausted I just wanted to climb back into bed, but instead I forced myself to drive to work, generally crying the entire way.
I could not sleep. I could not get to sleep or stay asleep. Woke up every 20 minutes for the first 2 hours, then just lay there wide awake and exhausted the rest of the night. (My lyme doc said that lyme affects the sleep center of the brain. With good treatment, my sleep problem went away in no time!)
The last 3 months before my diagnosis, I had continual nausea. Even looking at food was often impossible for me. The sight of it would bring on a terrible bout of nausea. I lost weight due to this.
I did everything by will power.
I would get episodes of horrendous abdominal pain. I had colonoscopies, x-rays, etc. which all showed nothing. Once, after 10 days of laying home on narcotics due to abdominal pain, and after getting various tests, I went to the ER which expected appendicitis. They did a complete body scan which showed nothing. So, they sent me home. A few hours later, the episode finally ended. (I suspect this was all due to bartonella.)
I got terrible dental pain that lasted for months. Dentist did one root canal, then another, then threw up his hands and sent me to an oral surgeon that diagnosed it as "inflammation." For months I lived on anti-inflammatories and prescription narcotics for pain. I wanted to cut my head off. It felt like liquid fire was flowing down my jaw. Cold and wet weather made it worse. It finally went away when summer came.
I also experienced terrible word-finding problems, so that I became afraid to speak at meetings. I couldn't remember the name of anything--like sponge, cup, book, etc.
I had memory problems. I couldn't even remember the name of my coworker who I talked to daily for at least 10 years. I told my gyn that I thought I had Alzheimer's. She just laughed at me. But, I was forgetting entire conversations with my husband, and things like that. That's what it was like for me.
I also had episodes of derealization, which I once told to a neuro and things just went from bad to worse. I was driving on the Washington D.C. beltway to get to the doc�s office, and my brain really believed that I did not have to hit the brakes when the car in front of me did. My brain believed that I would just float through that car like nothing. I had to mentally yell at myself that this was serious, I had to hit the brakes, I had to be watchful, I couldn�t just float in la-la land, etc.
I had lyme rage once that I know of. A guy stopped in his car and asked me directions. Next thing I know, I was screaming at him and he drove away! I didn't know what happened. I figured it was the craziness of menopause.
I had what one lyme doc called a "major central nervous system event." At work, I got gaps in my visual field. My email looked full of typos, and I couldn't fix it. I could not see my coworker's head, but could see her body. I knew I couldn't drive home this way, so called my hubby and sat out in the car.
In the car, I felt like I was going far, far away. I thought perhaps this was me dying. I didn't care. It was peaceful. I lost all strength, so I could not lift my arm or move.
When husband got there, I had to work hard to make a little motion to him, laying in the seat. He had to pick me up and put me in his vehicle. For hours I could not walk without leaning on him. I could not think. He asked me a question and I yelled, "Don't make me think! My brain won't think!"
I went home and lay down. By the next day, I was OK again.
I had episodes of sound sensitivity, where all of a sudden the radio seemed like it was blaring full blast. I would scream to turn the radio off.
I had nearly continual headaches, lots of stiff necks, migrating spots of what felt like sunburned skin when I lay in bed trying to sleep (had my own LSD trip there) and finally felt like I was being stabbed by thousands of pins and needles all over my arms and other places on the body. This was hard to bear.
Then, I found a doc (endocrinologist) who said my symptoms sounded like lyme, tested me for lyme and called and told me the test was positive.
With my second lyme doc, I developed more symptoms involving nerve pain--I got trigeminal neuralgia. Look it up and you will find out that this is intolerable pain that hits your face after you have been chewing for a while. It is like being electrocuted on one side of your face. You scream out. People can't live with this pain. Nothing helped it. After so many episodes, you can then get an attack any time. Some people eat only soft foods to avoid attacks. I was ready to do that.
I heard Burrascano speak and got him to read my medical question from the podium and answer it. I asked, �What do you think of a patient who develops additional symptoms while on high-dose antibiotic therapy?� He said that if the therapy is inadequate, the disease will continue to progress. (Wow!)
So, a person can get additional lyme symptoms while on antibiotic therapy if the therapy is inadequate. The lyme can continue to advance, in other words, in spite of taking antibiotics. (I was on only high dose amoxi and probenecid at this time.) That told me my therapy was inadequate.
I found that Benedryl took care of my trigeminal nerve symptoms--an odd thing. Or, it just decided to leave on its own, who knows.
After 2 years of this mono therapy, I had gotten rid of the nausea, stiff neck, headaches, stabbing, pins and needles, sound sensitivity, maybe word-finding problems also, but I could never stop the meds without getting just as sick as I was at the beginning--a mental and physical wreck. It only took 2 weeks to be back at square one. (Now I know this was due to inadequate lyme treatment and no treatment for coinfections.)
When that doc said to me that maybe I would just have to be on antibiotics the rest of my life, I knew it was time to switch docs. This was the hardest thing I had to do, but the best decision I ever made regarding this illness.
I had developed a great respect for Burrascano by going to hear him speak and reading his Guidelines, so I called other lyme support groups and specifically asked for that kind of doc. I got a good one. I went to him and got well with him in one year.
He said the previous therapy had turned all my lyme into the cyst form. (When the lyme senses that antibiotics are no longer present, it comes out of cyst back into the regular form, and hits you again.) He also tested me for cos through Igenex and found I had babs and bart, which really surprised him since I had gotten fairly symptom-free.
So, he treated me for everything I had.
I continued to work throughout my ordeal (but sometimes just 2 hours per day and I had to go home, and many days off). With the Burascano treatment, I got my periods back within a few months, so now I was pre-menopausal again. I got back my normal tear production, so no more dry eye. I got back my saliva. I got back everything lyme stole from me. Everything was reversed.
Lyme stole 5 years of my life--5 years in which my husband just hauled me from place to place, all the while thinking I was going to die and he would be a widow.
During that time, I would often say "I should be hospitalized, I am so sick," or "If I was a horse, they would take me out and shoot me." And, sometimes I would tell hubby it was a good thing we didn't have a gun because on that day I would use it and made like pulling a trigger at the head.
This from a positive, happy, never depressed person. It's just that a person can only take so much suffering before they decide to call it quits because they can�t take it anymore. That's the way it was before my diagnosis. No one knows how hard it is to suffer every day, year after year, and be humiliated by every doc they go to--except lyme patients, of course.
I probably have forgotten much of what I suffered, but this is what I remember right now.
I hope it is a blessing to you, Lymedin2010, and to many others.
It is now 7 years since I completed my treatment and I am still symptom-free, enjoying my life.
A few years after I got rid of lyme, babs, and bart, I got bitten again and got a bulls eye rash. Went back to my lyme doc and started treatment within a week of the bite.
He put me on 2-3 meds to treat lyme, babs, and bart. I had a slight herx on day 2-3. That was it. So, after 30 days, I was finished.
So, I have had lyme twice and got rid of it twice thanks to a good Burrascano-type doctor.
I thank God for getting me out of the lyme hell-hole. I still thank Him every day. And, I keep all of the patients on LymeNet in my prayers also.
My desire is to see every lyme patient get rid of this horrendous disease. That's why I stick around LymeNet. I want to help as many people as I can--by pointing them to the good doctors and giving them the benefit of my experience and knowledge where I can.
With this specialized knowledge, it is so easy to make a major difference in a person's life--just by sending them some doctors' names, or sharing some info from the Burrascano Guidelines or my own story.
When you have been sick with lyme for so many years, you don't just walk away from that large part of your life.
You can make something wonderful out of that experience by helping those who are still caught in the lyme trap. This way, your suffering was not in vain. Your suffering can become another person's gain.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I am hoping someday I can look back on this like you. I a also hoping that in doing that I will finally have the clarity to see what Gods plan was in putting me through and have the energy to make a difference for others just as you and others continue to do here
Thank you for sharing your story here
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
pme,
This is what I have learned:
1. God has a reason for everything.
2. You have to wait to find out what it is.
Right now, you may not value what God intends to do to you and through you by taking you through this lyme wilderness. But, stick close to Him, and in the end you will see what the reason was.
My advice to all lyme sufferers is, as best you can, not to give in to fear but try to remain at peace as you go through your lyme treatment. It is the best thing you can do for your health.
Negative and fearful thoughts tell the immune system to not fight, to shut down, to quit and give up. Positive thoughts tell your system to kill lyme, it is worth the struggle, and not to give up.
Expect bumps in the road and take them as part of what is supposed to happen. Try not to get alarmed. I often laughed and said, "Par for the course, I guess" when I got horrendous symptoms, or lost my ability to think and walk (temporarily), etc.
Same with the flares that put me in zombie land and herxes. I said, "Well, you know this is what it is supposed to be like. So, just go through it."
If you need something for anxiety, ask your lyme doc for it. Try not to live in anxiety and your treatment will be a lot easier on you emotionally and physically.
Don't ever give up hope. Expect to improve. Expect it to be tough. Decide it is worth the fight. Give it all you've got. Fight to get your life back. I and others I know have gotten rid of this disease.
The doc is the key. Get the absolute best lyme doctor you can get.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I also want to thank TF for all the help she has given many of us through the years. She is truly an inspiration.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Pme- Thank you.
TF- Again, thanks for coming through and for the wealth of information. �Your story definitely strikes a chord and hits home. When I read your story I couldn't help but pause and thought to myself, "what a woman!". You are absolutely right on remaining positive. �I force myself to eliminate any anger and stress and try to be at ease with everything around me, otherwise my symptoms go haywire.
It is interesting to see in your case, that Amoxi acted as a good cyst inducer. �This gives partial credence to Dr. Sapi's in vitro study on Amoxi, although it appears within you it created far more cysts. Perhaps those numbers have to do more with Amoxi concentrations and individual excretion rates? �The greater the concentration of Amoxi the further the kill kinetics are skewed toward encystment.
"Amoxicillin reduced spirochetal forms by ~85%�90% and round body forms by ~68%, while treatment with metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%."
Amoxi acts on the 50s ribosome and only destroys BB if it is actively dividing. �If it is also potent with cyst induction it never completes its initial purpose, but fortunately you're case has demonstrated what has been already dissimenated. �Flagyl is a GOOD cyst buster and is a necessary ABX in treating later stage lyme.
One would wonder why ALL LLMD's don't start out with administering Flagyl on top of the initial antibiotics. �My NP stated that they found Flagyl to be good for coinfections as well, which is the same I have been hearing online about Tindamax. �Great to know now, but why am I given this 1 year later. �It just doesn't make sense.
I have experienced a similar scenario with a combo of Biaxin and Doxy. �Before this combo I felt like I was dying on multiple occasions and on a progressive decline. �I herxed on this combo for 2 weeks and then the majority of the symptoms started to melt away and I was no longer feeling like death. �Far from being cured, but I was happy not to feel like dying and happy not to be in constant pain and be able to finally sleep.
Two months into treatment I ran out of Biaxin and unfortunately the pharmacies ran out of supplies and I was forced to change. �Within a little over a week I backslid. �As the days passed into the 2nd week I felt the symptoms return in just about the same order that they initially dissolved in, but I didn't let it get too far.
Doxy and Biaxin affect the 30s ribosome and inhibit protein synthesis. Referencing Dr. Sapi again and from my own experience it appears this combo is also very efficient in converting cysts and slowing down BB. �
I believe this combination works better with a fully functional immune system, something that is lacking in me. �I can feel myself compromised and have had stages of lowered body temperature. �I can �easily see via microscopy my very pathetic and small phagocytes and can observe their sluggishness.
This combo still needs Flagyl or Tindamax to complete the arsenal, just as you needed the addition of Flagyl with Amoxi.
"Doxycycline reduced spirochetal structures ~90% but increased the number of round body forms about twofold."
Questions (please place Y/N): 1) Can you list your symptoms after your 2 month course of Amoxi and Flagy? �A list like this would be helpful for those of us trying to figure out which bacteria is causing which symptom.
2) Before any treatment or during, did you experience any of the following symptoms (please place Y/N):
��A) Muscle twitches that can occur at any part of your body. �If so did you notice those twitches growing and getting bigger as your � � � � � illness progressed? �For me it almost feels like those have grown and that there is something bigger causing them now.
��B) Did any of your limbs or any part of your body spontaneously jerk?
��C) Did you have any TMJ or any jaw disturbances or clicking?
��D) Any crackling or popping of your neck?
��E) Any tremors or vibrations and if so where?
��F) Did you experience lowered body temperature?
��G) Or where you one of those that had more fevers than low temp?
��H) Did you feel like you had a circulation issues, with problems of circulation when you crossed your arms or feet. �Burning of the bottom of your feet as you stood up in place for a short period of time. �Had to sleep in various positions in order to ease blood distribution and circulation, such as arms spread out.
�I) Did you experience any Tinnitus and how bad was it? �If so at what point did it go away?
�J) Did you feel more symptomatic when overly tired? �For me, I get more twitches, vibrations, eye fireworks I call them (with nerves just firing away).
Posts: 2087 | From NY | Registered: Oct 2011
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fflutterby
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I want to cry when I read these posts TF. You are amazing. Thank you, for all of your advise over the past two years. When I am done with thia, I am also going to pay it forward. God is so good.
"Get the absolute best lyme doctor you can get."
So very very true.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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TF, Thank you for your help in finding a terrific doctor. I have found that the spiritual aspect is very important in healing.
I plan on paying it forward..someday.
Posts: 131 | From Maryland/USA | Registered: May 2011
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17hens
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posted
Sweet, sweet, thread. Uplifting and full of hope. Hugs to all.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Lymedin2010
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TF?
How far into being sick did you start your exercise routine? When you first started Amoxi and Probenecid or during the Flagyl treatment?
Posts: 2087 | From NY | Registered: Oct 2011
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I also say God Bless You, TF!! I really rely on you now that I'm unable to post thorough responses (esp to newbies) now that my neck pain is out of control.
Thank you for all you do here!!! Thank you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
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So inspiring (sharing your story and your advice)! You are a very kind soul, TF. The world is a better place with you in it. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lymeboy
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Ditto that. TF rules. I wouldn't be where I am without her.
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nonna05
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Cudo's...I also thank you and the other's that hung in here after....Without it I just am not sure what I would have done...
Answers to the above question's would be great.. I've wanted to know when you start something strong/maybe right..if it gets a bit worse before a turn for the better??
Just can ask LLMD very little in between and when thing's come up..
Did you have the lead suit??? Goofy6 talks about. I think I have 2 on
Did any setbacks or changes make symptom's that were better re-appear??...
In your opinion does everyone need Flagyl?
Bless you for all you do..
TuTu,,so sorry you're in such pain. Is this kinda like the vertebrae thing?? Weak bones or injury?
Either way .will be praying for you...
Praying Gods' favor on/for you all....
It's so nice to hear when people get progress and at same time you're like me too, please!!!
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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thanks again
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
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Regarding when I began my weightlifting:
After 2 years of lousy lyme treatment, I switched to a doc who followed the Burrascano protocol.
After one month of his treatment (treating lyme only), he told me I would never get well unless I did the Burrascano exercise program. (Exact same thing Burrascano says.)
At the time, he had treated my lyme for one month with amoxi and flagyl. Now, he continued just the flagyl and gave me Levaquin to go after bartonella.
So, I began the 1 hour weight-lifting program while on flagyl and Levaquin.
Lymedin2010, regarding all of the symptoms you listed in your question #2, I didn't have any of those except for the burning of the bottoms of the feet.
I believe I got that burning during my Bactrim treatment (for babs and bart) and after taking Levaquin for one month. But, I could be totally wrong on this. It was just for 3 days in a row, but the bottoms of my feet felt totally burnt starting in the afternoon. It was always set off by walking on hot pavement (in shoes) each afternoon on a particularly hot day.
When it first happened, I actually thought that the pavement was so hot it was burning the bottoms of my feet through my shoes!
So, if I am guessing right, I got it when I finished lyme treatment and Levaquin and moved on to babs treatment (with Bactrim which also hits bart). I never kept a daily record of these things, so I could be totally wrong.
Regarding what symptoms were left when I finished lyme treatment, I wish it were so easy to answer. First, I didn't keep a daily record of each symptom, so I can't answer when word-finding went away, or anxiety, panic attacks, memory problems, or episodes of excruciating abdominal pain, etc.
What I can tell you is that it took months for my various bodily systems to return to normal after I COMPLETED my lyme treatment. Months.
So, for example, it took about 3 months after completing lyme treatment for my gynecological system to return to normal. Slowly, my ovaries "woke up" and began to produce hormones again. (My ovaries had shrunk to a very small size and stopped functioning totally due to being attacked by lyme. This had gone on for at least 5 years prior to getting to the Burrascano style doc.) I slowly began noticing the changes that go along with your ovaries now functioning again. I slowly got back normal vaginal secretions over that time, then my monthly menstrual cycle and sex drive and feeling of well being--everything that goes along with a normally functioning gynecological system. I now had estrogen, testosterone, etc. again being produced by my body.
Once all of this went back to normal, I was now considered pre-menopausal again (after 5 years of being classifed as post-menopausal). So, I tapered off and finally stopped my hormone replacement therapy. I was back to a normal person again gynecologically.
Regarding my muscles, this was my most enduring lyme symptom--extreme muscle weakness. It took probably 3 months from the time I started trying before I was finally able to do a 1 hour weightlifting workout. When I started trying to do it, I could only do it for about 5-10 minutes and that was with lots of resting in between each try before I finally gave up with total shaking.
So, I am guessing it was about 3 months before I got to a one hour workout. That would be about 2 months after completing lyme treatment that I was finally able to do a one hour workout. So, I had moved on to coinfection treatment by this time.
Then, a few more months (probably about 3) before I felt like my muscles had gotten normal strength back.
So, it likely took 6 months of hard work to get to where I had a normal person's ability to walk, stand, hold up my arm, hold open my mouth, or anything else I wanted to do.
By this time, I was still treating babs, but no longer had any lyme, babs, or bart symptoms. I just had the residual effects from lyme.
From what I understand, the extreme muscle weakness is a neurological symptom. It is not a problem with the muscles. I proved that over and over early in my lyme experience, when the weakness "turned on" and "turned off" like someone throwing a switch.
I could have extreme muscle weakness for 7 months continuously and then wake up one morning and it was totally gone and I was normal again. Or, I could go from being a normal person, able to climb 7 story high ruins in Guatamala to a person who couldn't stand up for more than a minute over night.
Now, the fear of extreme muscle weakness took quite a while to get rid of--probably about 2 years. I didn't realize that that was what was behind my fear of taking a walk within my neighborhood. But, eventually I realized that this was what was behind my feeling of apprehension when I tried to walk my neighborhood.
I had been stranded by my extreme muscle weakness so many, many times over the years (about 13 years or more) that it just became habit to think that I could not take a walk without having to collapse somewhere along the road, unable to go on.
Realizing what was behind my strange feelings about taking a walk is what freed me from those feelings. I had to tell myself over and over that all of that was behind me, that I would not get too weak to continue, etc. I had to re-educate my emotions, I guess you could say.
So, I would say that I became symptom-free gradually over a few month period after lyme treatment and while I was treating coinfections.
Then, I just had episodes of extreme symptoms due to the babesiosis flares that I experienced weekly as soon as I started babs treatment with Bactrim DS.
These lasted for the first 6-7 months I was on babs treatment, but they immediately went down to practically nothing when my lyme doc added artemesinin to the treatment plan. So, the flares were horrible only the first month of babs treatment. After adding the art, they were just a small annoyance and finally something I was on the look-out for just so I would know when I was finally finished treating babs.
The hardest thing for me to do after the flares stopped was for me to continue treating babs for 5 more months when I was totally symptom-free. Taking the meds, the probiotics, sticking to the diet, etc. was very hard when I felt normal in all respects. I had to continue treatment until winter ended so as to make sure I did not relapse.
I want everyone to know that once I got to my Burrascano style doctor, I never went "backwards" with symptoms. That means that I didn't get rid of symptoms only to have them come back later when meds were changed. AND, I didn't get any new symptoms except temporarily when herxing or having babs flares. All that happened on my Burrascano style treatment was that symptoms WENT AWAY.
I will never forget Burrascano saying that if the therapy is inadequate, the disease will continue to progress. I clearly saw that happen to me when I spent 2 years or more with doctors who didn't know enough to get me well.
So, I didn't see any progression of my diseases with my final doc. That was wonderful. It made me know I was on the right track.
Herx symptoms were very temporary. So were babs flare symptoms. By very temporary, I mean less than a month for a lyme herx symptom to go away and 2 days or less for a babs flare symptom to leave.
I also want to add that my final doc thought that at the end of coinfection treatment, he would have to go back and re-treat me for lyme. (Remember, he had only treated me for lyme for 2 months at the start of my treatment with him.) However, when I returned to him after taking meds all winter symptom-free and told him that I had stopped all meds one month prior to seeing him in the spring, that is when he decided that no further treatment was necessary in my case.
I believe that my weightlifting had boosted my immune system to the point that it was able to take care of any remaining lyme that was in my body. So, no further lyme treatment was necessary for me.
I never had my metal fillings out or my root canals. I never treated for parasites of any kind.
When he found out at my first appointment that I was still working, my final doctor said he believed I had a very strong constitution.
I also want to add that I did not smoke and very, very rarely ever had a drink of alcohol during my adult life. So, these things likely added to my ability to cope with lyme and coinfections for as long as I did and as successfully as I did.
So, hopefully, that gives you an idea of how it is when you are being successfully treated for these diseases. At least, it's how it was for me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
nonna... bulging discs in neck and back .. going for PT beginning today
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
TF thanks again.
You mentioned that you received "good Lyme ABX" during the very early stages, which did not have the favorable outcome desired. �Can you tell us what combo of ABX you were given before the Amoxi and Probenecid?
This is important for us who have tried initial combos and important for LLMD's to keep on trying different combos. �Just because an initial good set may not work, does not mean that you give up.
I have and continue to experience the muscle burning. �It's as if someone has poured Clorox on them, with a relentless burn. �At times more severe than others, and just as you say as if someone just flips a switch.
I started to get this 2-3 months into treatment and it hit partly my chest, but severly the side of my stomach. �It was more painful when sleeping.
Incidentally, now with 1/2 more gram of Amoxi than you were taking, same Flagyl, and 250MG of Zithro, I am having more burning of the leg and arm muscles. �Something I did not have much of before and never to any noticeable degree before starting treatment. �And�this is one month into treatment.
So NO reduced body temperatures, OR fevers that were consistent? �You had occasional but rare fevers and overall normal body temp?
Posts: 2087 | From NY | Registered: Oct 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
TF, how in the world did you restore your gut after abx?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I'm going to ask my husband to read your description of your symptoms. It is so articulate, and I sometimes struggle to explain how I feel.
I realy appreciate what you have done for this community.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
TF - How did I miss this the first time around.
Thank you - Thank you - Thank you for all you are and do!!
And Thank you to Lymedin2010 for starting this thread!
Posts: 448 | From minnesota | Registered: Feb 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I would also like to Thank TF, not only for the valuable advice over the years, but for a sense of hope. I'm sure there are many people that think - if TF can do it I can.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Well count me in. Actually my hubby is the sick one. If not for TF, he'd still be seeing one of "the brothers" in upstate NY. Bad news there. We are now with one of the best. Thank you TF. Hubby has terrible neck pain almost all of the time. His first symptom was foot drop. And the visiting nurses now say 1st symptom you get is the last to go. ?? I don't know. He has a brace, uses a cane now. Has dropped around 50 lbs. Now on IV Vanco. He tells me since yesterday that the throat restriction he has felt has disappeared. Making his breathing better. He herxes about every other day. I get so frustrated and scared. I always turn to Lymenet. So many are so worse off. But I am so thankful to have found Lymenet. Your here 24/7.
Posts: 305 | From United States | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
At the end of my treatment, my Burrascano-type doctor restored my gut for 30 days.
He had me take diflucan, nystatin and Florestor and stay on the anti-yeast diet for the entire 30 days.
I took one Florestor daily. I don't know how long I was on the nystatin and diflucan. I may not have been on these 2 the entire 30 days.
This treatment got my gut flora (normal, healthy bacteria necessary for good health) back to normal. As you know, the high dose antibiotics destroy this flora, and candida overgrowth very commonly occurs.
So, the time of restoring the gut will kill the candida overgrowth and allow the gut to return to the state it was prior to long-term antibiotic therapy.
After that, I was free to eat whatever I wanted! I waited about a year before I drank any alcohol. The doctor did not advise this, but knowing what alcohol does to one's health, that was the amount of time I took before I felt it was a good idea to drink any alcohol.
I am glad that telling this story makes people happy and gives them hope. I still thank God every day that I have my heath back. I doubt that I will ever take good health for granted again, no matter how long I live.
Lyme disease made me a more grateful person and a more compassionate person. AND, I run into people all the time who likely have lyme disease.
I enjoy pointing them to lyme doctors who will treat them with respect and give them the joy of knowing that they really do have a terrible disease rather than a "mental" problem. And, I love to hear of people getting out of the lyme hell-hole and living their lives.
You will never put the medical profession on a pedestal again once you have had lyme disease.
I pray that I will live to see the day that the truth about this disease is known throughout the medical community and not just among a brave few doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
lyme-o, many have said that their first symptoms were the last to go, and that makes a lot of sense to me.
My extreme muscle weakness was my first symptom, and it certainly was late in going away. It took good treatment and a lot of weight lifting for me to get rid of this symptom.
Sounds like those nurses know what they are talking about!
Posts: 9931 | From Maryland | Registered: Dec 2007
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