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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/13/2008 12:21 PM (GMT -6)   
How did your first symptoms start? When did you suspect lyme? How long did it take you to get dx? Were you positive per cdc standards? How long have you been on meds and how long did the meds take to start working?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 11/13/2008 3:52 PM (GMT -6)   
My first symptom was (and I still have it) wandering pains in my legs. This started in 1979 or so, a few months after the bite from a red fire ant.
I'd never really thought I had Lyme, because I've never knowingly been bitten by a tick. My Naturopath decided to test me for Lyme on a hunch.
I was diagnosed in 2007, so I guess it took 29 years?
My first Lyme test from IgeneX lab was IgeneX positive but CDC negative. Due to disbelieving doctors (the rest of my medical team), I was tested again this year - January's test was negative (Quest lab), and then in July, I tested CDC positive on a test that was done at Mayo Clinic (the local lab sent the sample to Mayo, I didn't know that's what was going to happen).
I started treatment early in 2008, started feeling better about 2 months later, so felt I could add some herbs to help kick the Lyme, then all He@# broke loose and my gut shut itself down (can't swallow, slow stomach emptying, feeding tube in small bowel not working either). I have not been on any treatment since the end of June of this year because of the gut shut-down.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/13/2008 3:59 PM (GMT -6)   
Wow, that is quite a story. What did your leg pains feel like? Were they aches or stabbing pains?
 
When will you be able to start treatment again?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/13/2008 8:57 PM (GMT -6)   
king1234 said...
How did your first symptoms start? When did you suspect lyme? How long did it take you to get dx? Were you positive per cdc standards? How long have you been on meds and how long did the meds take to start working?

I started with a right swollen knee, severe depression, and then knee joint pain.... and then hip pain.  Since I already had "depression" (pre-Lyme) which was VERY under control with medication and had NEVER caused physical pain, swelling or a missed day of work.... I turned to my psychiatrist for help with the "severe" depression.  She called it "breakthrough depression", etc.  So as I am physically getting worse and worse, I'm being treated with all kinds of antidepressants, anti-psychotics, etc.  It was pure he11.  I was told for 13 months that it was "all in my head".  Finally, I told her that I wanted an entire MRI of my body and brain becuase I knew there was something physically wrong wih me.  Her response? "Well, I did have a patient with a brain tumor once."  Finally I made an appointment with an orthopeadic dr. to look at my swollen knee.  Prior to my appointment I was trying to find an anotomically correct picture of a knee and I stumbled across Lyme disease.  I had almost every symptom.  So when I went to the orthopeadic I asked him to run a Lyme disease test.  A few weeks later he called me back and told me that all my tests were negative EXCEPT for the Lyme disease test (EIA).  Thus began a 4 month journey of being yelled at and dismissed by various infectious disease doctors.  FINALLY, I found a doctor to treat me.  I had been sick for 16 to 17 months before I received my first rx for 200mg of doxycycline.  Man was I pizzed off.  All of that misery and all it took was an antibiotic??????  A cheapy everyday antibiotic?????
I took the oral Doxy for 4-6 weeks and returned to work part-time from 03/02 through 10/02.... and then I relapsed... and I again tested positive for LD and then the IV s%^t began.
I have tested positive for Lyme disease and Bartonella by NY state standards (like I care, I live in FL) and CDC standards. So in that respect I guess I'm lucky.... I actually have a positive LD test... that can't be disputed.
I have been sick with LD since June 2000.  First tx started approx. December 2001 through January 2002.  Relapse October 2002.  Been sick ever since, have tried almost everything... seems like I have a complete breakdown about every 3 to 4 days.  I just can't believe that this is happening to me.... to all of us! rolleyes smhair mad confused mad smhair rolleyes

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08-WE'LL SEE - NEW!!! AND UPDATED!!! - turned out to be 10 weeks of IV Rocephin, my first visit to a Pain Management doctor - oops, but she was cool, non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  And, my abx's have changed again, just see below. 
NEW!!! AND UPDATED!!! - Current Rx's 08/25/08  11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg Rozerem 8mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet  I never did order that off the internet,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
The "I don't know how much more I can take of this", song - heard this one coming home from my LLDr's office on Halloween 10/31/08 - "Ain't found a way to kill me yet" - http://www.youtube.com/watch?v=5gHiR1xeOSs
 


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 11/13/2008 9:41 PM (GMT -6)   
Headaches, dizzy spells, and severe insomnia. Took me 16 months to get diagnosed, and only then by someone who'd actually been diagnosed with LD herself. She told me my symptoms were very similar to hers. It's sad that a laymen has to direct a physician in what to look for in order to get properly diagnosed, but thats how it happened for me.

me: I believe I have Lyme Disease
Doc: No you probably don't.
me: I think I do
Doc: No you dont
me: I think I do
Doc: No you dont
me: I think I do
Doc: No you dont
me: I think I do
Doc: No you dont
me: I think I do
Doc: No you dont

me: Just DO the test
Doc: umm...Ok I guess you do. My bad.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/13/2008 10:05 PM (GMT -6)   
So it sounds like most of you were positive via a normal lab and by cdc standards?

----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 11/14/2008 12:38 AM (GMT -6)   
King,

Not initially positive by CDC standards, that only happened after I started treatment. And my treatment was homeopathy to boost my very depressed immune system (that was my ONLY treatment initially, and I herxed from the regular dose so had to cut the dose down to be able to tolerate it).

The leg pains feel like my muscles are being shredded one strand at a time, also a deep achy sensation in and around low back/hip, knee, & ankle joints. The achy pain wanders from one joint to another & the shredded muscle sensation migrates from one muscle group to another at the same time as the joint pain migrates, usually up & down one leg or the other, but sometimes starts in both legs and then switches to one side. If it starts in both legs, then it will do one leg one day and the other leg the next day before disappearing again for a bit.

I have no idea when I'll be able to start treatment again. I'm kind-of in a catch-22 - it is thought that the gut shut-down is from Lyme, but in order to treat it, I have to have a working gut (for detoxing, if nothing else...no food going in = poor colonic motility also)...and my nutrition is not complete with the TPN (vein feeding), so that's why they wanted me to have a feeding tube, but it isn't working either (small bowel also must be shut down). The previous times that my gut shut itself down (twice; this year is my 3rd time), it was only for a few weeks...this time, it has been since the end of June and no sign of improvement. And yet I think if I could get treatment for the Lyme, the gut may start itself up again.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/14/2008 12:57 AM (GMT -6)   

Would you mind sharing with me what herbs etc you are using? I have got to try something, especially if I dont get dx Monday hence no meds.

My pains in terms of the ache is how you describe, its deep as though its my bone and it will slide down a finger and pulsate for a minute, leave come back hours later, or hit my toe, or my ankle. When this first happened if felt like my bones were being hit by a hammer or crushed. My most annoying and scary symptom now is the non stop twitching and joint cracking/popping/grinding that is getting worse


I have got to try something if I dont get meds on Monday. I will prob break down in tears if I dont get them.


----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 11/14/2008 4:02 AM (GMT -6)   
king1234 said...

Would you mind sharing with me what herbs etc you are using? I have got to try something, especially if I dont get dx Monday hence no meds.

My pains in terms of the ache is how you describe, its deep as though its my bone and it will slide down a finger and pulsate for a minute, leave come back hours later, or hit my toe, or my ankle. When this first happened if felt like my bones were being hit by a hammer or crushed. My most annoying and scary symptom now is the non stop twitching and joint cracking/popping/grinding that is getting worse


I have got to try something if I dont get meds on Monday. I will prob break down in tears if I dont get them.

Email me and I'll send you the list of stuff I was taking prior to my gut shutting down.  In a nutshell, I was using Buhner's Core Lyme Protocol herbs, with some additional herbs, homeopathy & supplements for other things.  Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/14/2008 8:54 AM (GMT -6)   
Hi King, I am so sorry you are going through so much right now. Check out the link in my signature for my story. I have had nearly every male Lyme symptom. Take care.
Here is my story:

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/14/2008 12:22 PM (GMT -6)   
Wow, thanks for sharing your story. That is incredible how many ticks you had on you
 
What other symptoms did you have?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/15/2008 7:36 PM (GMT -6)   
I reprinted this from a thread I started called "A Story and a few Questions". It's pretty long. Hope you don't mind if I reprint it here.

Hi everyone,
I'm new to the forum, so I'm gonna tell you my lyme story and then ask some questions pertaining to it.

I've been dealing with acute symptoms for about 7 months now, and have been under the care of an LLMD for 5 months. Sometimes I feel as if I'm moving forward and sometimes I feel that I'm slipping back. I'm trying my best (as I'm sure you all are) to effectively treat this without completely devastating the finances of my family. It's a huge burden, and I'd say that my newest curricular and extracurricular activity has become trying to figure out how to get rid of this stuff.

I got my bites in August 06. I was an avid hiker as my small central PA town is bordered on 2 sides by mountains and one side by a lovely river. There are trails all over and I hiked them several times a week for years, and spent time cleaning and maintaining the trails.Like so many, I did not see a tick. I got two bites on the back of my right leg that looked like mosquito bites. And itched like mosquito bites at first. After several days the bites turned purple/ black and began to grow.

Within a week, one was about 6 inches across and one was about 4 inches. They didn't really itch anymore, but they kept getting bigger. I had been to my General Practitioner and he thought it was a set of spider bites. Possibly brown recluse. Treated me with steroids, which I found out years later was the worst thing that could have been done for a lyme infection. Steroid treatment with Lyme disease is equivalent of pouring gasoline on a fire.

Had a biopsy performed by a dermatologist. My Insurance didn't cover it and 6 weeks later I got results that said only that I had been "bitten by a spider or some kind of insect". I then got to pay $600 out of pocket and still have a useless "punch-hole" scar on the back of my leg to help me to remember to be somewhat wary of Med folks who want to give tests and don't tell you what the test is looking for. I've got time to learn if you're digging around in my body or my wallet. Tell me. I want to know.

Anyway, within a month the bites went away. I had no symptoms at all at this point. Nothing. It went away and I thought that that was it. Over the next two years I would deal with two really bad lower back aches that lasted for a few days. Figured that it just went along with being in my early 40s. I also started dealing with an occasional feeling in my right eye like someone had plunged a needle in the right corner. Very sharp and out of nowhere. Thought that this was just eye strain. I had been to my optometrist and he said that I would need to use reading glasses but other than that, there were no problems.

And one huge thing that I had no idea was a symptom was that I lost almost all interest in reading. I am an avid reader and there are thousands of books in my house. I used to read about 20 books a year. Now it was taking me months to read a book that was a couple of hundred pages long. I thought that I was just distracted about... about.. I didn't know what. I just couldn't concentrate.
Bad news as I am the founder and artistic director of a Shakespeare theatre and a children's theatre. To do my job, it's not only important to read, but to WANT to read. This was maddening.

In March of this year, over a year and a half after my "spider bites", and after a very hectic month of work during which I had gotten very little sleep and was under quite a bit of stress, I got the worst back ache of my life. Extreme pain over my right buttocks. I felt like I had a knife in me. Went to a chiropractor that day, and he put a TENS unit on me and then did some pretty jarring adjustments. I made it through that night's rehearsals and the next morning I couldn't stand. I hurt, but worse than that I just felt like I couldn't hold up my upper body. Shaky and I couldn't hardly balance.

I was like this for twelve days and stayed on my bed or on my couch. Went to my GP and he said that it was possible that I had strained my sacroiliac joint. He sent me for Xrays which showed nothing. I then went through 2 months of physical therapy. Nice guys and they put me through the paces. My primary therapist was an MD who put me through a lot of strength training and also gave me a lot of chiropractic-like spinal adjustments. I got stronger in the back but I started getting bizarre cramps under my shoulder blades and in my abdominal wall. My neck got really stiff and most disturbing was a growing pain in the place where I had had my appendix out when I was a kid. When I sat in the car or in a chair for more than twenty minutes the back pain would begin and then the lower ab pain would start to grow.

Soon the pain had begun to really hurt under my lower rib cage. And I wondered, "Do I have cancer? Do I have MS? Do I have ALS?" I was freaked OUT. I was exercising everyday, stretching and breathing... and I was feeling worse and worse. I started to feel kind of polluted inside. I felt like something was wrong on a cellular level. I was tired and wired. Folks at work work constantly coming up and saying things to the effect of : "You OK boss?" And I'd smile and say, "Oh yeah, just getting over this 'back' thing." I was sent for an ultra-sound of my organs, and they all looked fine. But they were hurting, now. All across my pelvic region and up my abdominal wall. My twelve year old daughter asked what was wrong and I just had no idea what to tell her other than "I'll be fine."

I started burning up the Internet. Loaded in my symptoms and what kept coming out was "Lyme". I did a lot of looking around on YouTube and found all of the Lyme Vlogs. Bunches of people with Lyme who are stuck in their house and have Internet camera access. I got a lot of information from these folks and they told me what the "dead ends" would be in trying to get proper treatment. I was more scared, but I was glad to have a direction.

I went back to my GP and he said he wanted to send me to a Neurologist. I asked him if the Neurologist was "Lyme Literate" and he didn't know what that meant. I said that I would prefer to go to a MD that specialized in treating Lyme, and he said he was pretty sure that any infectious disease specialist could help me. I told him "no", I mean, he's a good guy my old doc. But he knows nothing about Lyme. He's not hostile to it, but he's clueless about it. And admits it. So I got him to write me a letter that said that he recommended that I find a Lyme specialist. I also got him to prescribe me 200mgs of Doxycycline a day.

My Lyme doc was out of the state and I wouldn't be able to see him for a couple of months. I talked to him on the phone for about an hour and it made me feel better especially when I found that he, his wife, and his sons had all been treated for Lyme and were all now highly functioning if not 100%. They were all at least in the high 90's. And he said that though I had later stage lyme, I had not had it so long that I shouldn't be able to get the symptoms back in the box. I felt re-assured.

This was a long time to wait though. My symptoms were getting worse. I upped my 200mgs of Doxy a day to 300mgs and hoped that that would help. The joints of my big toes started to tingle and ache. The knees started feeling bizarre, but mainly I was getting tired. In March I was still hiking the mountains around my town a couple of times a week. Now, getting up the stairs to my second floor apartment was becoming a bit of a challenge. I started cold sweating, and I could not take the heat of the outdoors at all. I had never been overly sensitive to heat.

And then, my brain started really fuzzing. I had fought back an anxiety disorder in the early nineties and had it in hand and was
off of medication (which had been a minimal amount of Xanax for a few years) . Now I felt anxious. And not just because of my symptoms. I was starting to feel as though I was walking around in a fog. I was constantly having people repeat things because I had trouble taking in the info. Sounds were irritating, as though the treble was cranked up on my stereo. I found that I could still recite all of the monologues that I had learned over the years, but memorizing even one new sentence was almost impossible.
I could recite my multiplication tables, but I had a hard time adding together two 2 digit numbers in my head.

My interests had reduced to 2: info about Lyme and info about Politics. I was anxious about both. I stayed at home a lot of the time and only went to the theatre 3 or four days a week. I stayed home and followed the election and researched Lyme. I didn't watch movies, I didn't read, I didn't listen to music. All three things had given me great pleasure, and now when I did them I felt almost as if I was doing an impression of my old self. They weren't giving me joy or comfort. They were uncomfortable. I used to be a rollercoaster enthusiast but I realized one day that a mild rollercoaster ride would put me in the hospital. How had I changed so much in such a short time?

I called my Lyme Doc and asked him if there was any way I could get to see him earlier. He said that I could see him in 3 more days instead of three more weeks. I had a friend drive me because I was feeling quite strange in the head, and my wife (and business partner) was taking up my slack at home and at work. My company has 7 full timers including me and my wife and four of these folks had just come in when my symptoms started. I hardly knew them. Still, they have been keeping my theatre going and they are very dedicated and completely behind my journey to recovery.

I went to the Lyme doc, and he actually spent 3 hours testing and talking to me. He was crazy expensive and does not take insurance, but just to have an MD that understood what I was going through, and finding that he had be through it, but much worse
gave me some confidence and hope;I felt better. He told me that it would be a long haul. And he told me not to expect any radical change in my feelings for at least 6 months. I do hope I see some differences in the beginning of '09.

Anyway, I got an Igenex Western Blot. Had to pay for it, of course. It eventually showed me 4 bands positive and 1 band indeterminate. This after I had had 2 negative ELISA's and another Western Blot that I had been told was "negative". So, I got on the Drug Train. My Lyme wiz upped my Doxy from 300 to 400mgs a day. 500mgs of Zithromax a day. 400 mgs of Plaquenil a day.

I also was instructed to stay away from sugar. That's fine, I'm not big on sweets. But he wanted me off breads, starches, carbohydrates. Tough. I am the sandwich king. I could spend the rest of my life and eat nothing but sandwiches. I need to eat lots of food with high omega 3s. I started eating canned Alaska Salmon. Blueberries. Macadamia nuts. I got unsweeted Whey Protein Mix.

I take fish oil caplets 3 times a day. 1000mgs of Vitamin C a day. B Complex. 100mgs of Magnesium a day. Selenium.

For the first month, I strapped in and waited for a Herx. I didn't get one. I didn't feel much better, but I got more jittery and tired. I came back the next month and The Wiz decided to take me off of Plaquenil and put me on Mepron. Yuck. I mixed it up in my mouth with whipped Cream Cheese to make sure it absorbed in my system. Doc thought I might be co infected with Babesia. I stayed on Mepron for three months along with the Doxy and Zith.

During the next month I felt better and drove myself to see the Doc. I asked him if I could direct our upcoming production of "Julius Caesar" that would be rehearsing primarily at night for the next 6 weeks. He said if I didn't do anything else but that, it would probably be OK. I had some energy and my head felt a bit clearer. I had worked on Caesar a couple of different times before, so it wasn't new material for me. This was encouraging. Also, my stage manager is a good friend, a total professional, and very supportive. I told her everything about what was up with me and she prepared to help me and to take up a lot of my slack.

I had some very good nights where I could push my symptoms far into the background. On most nights however, at the end of rehearsal I was completely exhausted. I was frightened to do the 35 minute commute home on many nights. I started to get nauseous, and I got a cough that turned into horrible wretching. Sometimes I felt as though I was gonna completely lose touch with myself mentally. Very scary feeling. Every night when I got home I would take two Ativan and an Advil Nighttime to knock myself out. I would sleep very deeply and generally woke up feeling better.

However, I was getting more and more tired. And my back pain was back with a vengence. And I had developed a constant ringing in my right ear. Often I would "feel Lyme" behind my eyes, giving me an unpleasant head ache. And I started urinating constantly, and alternating between diarhea and constipation. My energy was plunging. I was working about 4 hours a night and it felt like it was killing me.

I went to the Doc and he said that he thought that I was having drawn out Herxheimer responses. I thought that Herxes were more sudden and intense. This just felt like I was getting worse and worse. I had finally had a bit of an emotional break down during the previous week. Just dealing with pain and uncertainty for too long. And I know, I haven't had it that long compared to many. I know. But for that 20 minutes or so, it was just all too much. Too much hurting and not much pleasantness. The doc told me to go off of the ABX for 7 days. He wanted to give me a break. I was terrified to take a break, but also really scared of going on. He told me that when I went back on, it would be just Doxy and Plaquenil. No Mepron. At least for a while.

I began to regain some energy. But by the end of the week abated pain was coming back. I got back on Plaquenil and Doxy... and my show opened. That was 2 days ago. Today has not been that bad. I want to start doing some exercise, but I'm afraid I'm not ready. I want to walk around town today... even though I don't really FEEL like walking around town today. I'm taking all of my supplements and eating well. I don't know if I feel better than I did when this first started. I don't have as intense pain, but that was largely localized. Sharp pain in a few areas. I have less sharp pain these days, yet I feel that the Lyme is everywhere in my body. Aches all over and extreme fatigue. Sometimes my head is clearer than other times. The novelty of this extremely scary and painful illness has worn off. It seems like it is "me" now. I'm not trying to sound defeatist. I am working to get rid of this, but this half year has worn on me. I know that so many have it so much worse, but I just want to get past this.

I was always a "push through" kind of person when it came to sickness and I can't do that with this.



OK, if you're still with me, here's my question: For those of you who have seen improvement, what marked it? When did you know that you could be active again without "tearing yourself down"? How did you find focus? For those of you that are where I am, or worse: What gets you through? Also, has anyone had any experience with Tinitus? The ringing in my right ear is maddening, and although the other symptoms are awful, the abatement of this one symptom would so help me to get focus to work on other things.

Also, I am reading a bit more these days. I have found that reading aloud helps me to keep my train of thought. If I am gonna spend this much time on the couch, I at least want to spend the time reading some good books.

Sorry that this is so long. I wish you all well, and I thank you for reading my story.

Clark Nicholson

pjbat
Regular Member


Date Joined Dec 2007
Total Posts : 119
   Posted 11/17/2008 9:59 PM (GMT -6)   

My first symptom was a stutter in my speech. I ignored that for a few months, writing it off to stress, and then got suddently slammed with flu-like symptoms (nausea, weakness), tingling in extremeties, shooting pains all over, etc. It took one year to the day to get the Lyme diagnosis and that came only after my insistence for an Igenix test. Even at that, my primary md didn't acknowledge I actually had Lyme disease - only that, well, yes, I did have a positive Lyme titer. Then prescribed more anti-depressants. And when the nurse from the CDC called, she asked several questions, including whether I had gotten a rash and when I answered, no, she said I didn't fit the typical profile for Lyme and wouldn't be counted as an official Lyme case.

It's always interesting and insightful to read these stories. One thing I hadn't thought of was that I had also lost interest in reading - used to be an avid reader. In the last two months, I've been going through the books again... another sign I'm slooowly improving. I've been on abx, etc. since Feb 2008.


 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/17/2008 10:18 PM (GMT -6)   
Were your shooting pains like deep bone pain feelings that would just jump around to random parts of your body?
What bands did you test pos on?
----------------------------------------------------------------------
33 yr old female
 GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 

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