posted
I am new to this whole Lyme thing. I was diagnosed last month but they can't tell me how long I have had it which is scary in and of itself. The antibiotic cocktail they had me on was a trial and error test. I couldn't take the amoxicillin, deathy allergic. Found out the doxycycline is a severe adverse reaction. So after finding a herniated lumbar disc and the prompting of my chriopractor I finally have Bactrim and Zithromax. I have been taking them for three weeks and two days. The PA (physician assistant) said it might get worse before it got better but I wasn't expecting to feel like my 85 year old arthritic grandparents (God rest their soul). I am 34 and feel like I need to curl up in a fetal position to get rid of the pain.
My apologies for coming on strong. It is frustration and as the screen suggests feeling so out of control with no real information and getting vague answers with little sympathy or empathy.
Your input and advice is greatly appreciated and welcomed.
Thank you.
-------------------- Getting better it feels like. Added Colloidal Silver to the ABX, Olive Leaf and Cat's Claw. HUGE difference! Posts: 18 | From Raleigh, NC | Registered: Jul 2009
| IP: Logged |
posted
No, I have been working with my primary care physican. I live in Raleigh, NC and have been trying to find a Lyme specialist. The doc gave me a sheet of paper with a med schedule and said it comes from a doctor who has successfully treated Lyme but I don't know the name.
So what is this herxing and how long does it last? What is it a sign of?
...so many questions...
-------------------- Getting better it feels like. Added Colloidal Silver to the ABX, Olive Leaf and Cat's Claw. HUGE difference! Posts: 18 | From Raleigh, NC | Registered: Jul 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by LostnAfraid: No, I have been working with my primary care physican. I live in Raleigh, NC and have been trying to find a Lyme specialist. The doc gave me a sheet of paper with a med schedule and said it comes from a doctor who has successfully treated Lyme but I don't know the name.
So what is this herxing and how long does it last? What is it a sign of?
...so many questions...
I am so sorry you are suffering. So many of us can relate, I am afraid.
Of course you are afraid. I am 53 and last year, at my worst, I felt about six years old in need of a mommy and at the same time wondering if I would live to see the next day. This disease can have profound psychological consequences. Your emotions are normal!
May I suggest finding an LLMD (Lyme Literate Medical Doctor) to help you through this disease? If you go to "Seeking a Doctor" someone will come along and help you. I suspect the doctor your PCP is referring to is Dr. Burrascano, who is a brilliant Lyme specialist, but still you need someone to work with you one-on-one.
Herxing is a temporary worsening of symptoms caused by abx. It is a sign of die-off from bacteria. It can last any amount of time, I think. Sometimes hours, sometimes days. The problem comes in when we can't distinguish between herxing, a symptom or a reaction to the abx.
Have you seen the documentary "Under Our Skin"? If not, it is worthwhile and will answer a lot of questions you may have. Also, I suggest reading "The Lyme Disease Solution" by Dr. Kenneth Singleton. The information he offers is invaluable.
And, of course, Lymenet is the best place to come for questions any time. The people here are genuine and helpful. Their support is invaluable and almost all are dealing with the disease themselves or helping loved ones.
I suggest being tested for co-infections b/c most of us have learned that a tick usually gives us more than just Lyme and not all abx work on all the infections.
Best of luck to you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
posted
Leelee Thank you very much for the explaination. I will watch "Under Our Skin" and find the book you suggested.
I haven't had much luck with forums lately. One forum told me in recent months my children were too old so I had to find other ways of connecting with working moms. Nice... so I have been a little forum-shy. Normally I am an extrovert and love talking and making people feel welcomed but I have felt like an outcast with this recently in all aspects of my life.
Please don't get me wrong. My husband has been supportive. When i need to just stop he lets me. Problem is he does too so the house work continues to rack up and the tasks at work don't stop.
I am even ashamed to admit that it is not even 8pm and I am exhausted from the day.
Thank you again!!! Cynthia
-------------------- Getting better it feels like. Added Colloidal Silver to the ABX, Olive Leaf and Cat's Claw. HUGE difference! Posts: 18 | From Raleigh, NC | Registered: Jul 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi Cynthia,
Don't ever worry about saying you are tired on this forum! I doubt there are very few of us who don't suffer from on-going fatigue. It's a common symptom of this wretched disease.
Most days I sleep all afternoon. Some days I can't even get out of bed. Today was great and I accomplished several things. This is rare.
It is hard for people who do not have Lyme disease to understand those of us that do. The longer you are around Lymenet the more you will read posts that explain that. Lyme is a controversial disease if there ever was one and since we usually look so darn healthy it is incomprehensible to others that inside we are sick as can be.
I am glad your husband is supportive. That is a blessing. Mine finally came around to believing in Lyme, but it was a rocky road for a long time. He thought I was mentally ill, depressed, a hypochodriac, etc. It was awful. I never felt so alone in all my life. I am not sure I will ever fully recover from the isolation I felt when I was at my lowest point.
I feel much better now that I am in treatment although the road to healing is a long one and I probably have many months of abx ahead of me.
Please visit Lymenet whenever you have a question or need support. I credit the members on here as being my life-line. Most will help in any way they can.
BTW, I am on Zithromax too. I start Bactrim tomorrow. I also take Dynacin. Sounds like your protocol and mine are somewhat similar.
All the best,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
posted
Thank you Leelee!!! Thank you Lymetoo for helping.
It is so nice to at least know people will talk to me. People ask why I am out at work and I tell them I was diagnosed with Lyme and it isn't fun. If I don't get some sleep I will be out tomorrow. Not good...
Thank you again! Nice to know I have somewhere to go!
-------------------- Getting better it feels like. Added Colloidal Silver to the ABX, Olive Leaf and Cat's Claw. HUGE difference! Posts: 18 | From Raleigh, NC | Registered: Jul 2009
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Cynthia, A lot of us "Lymenetters" also go to www.lymefriends.com, which is more of a social networking site.
It is very friendly, come check us out. It's a very relaxed site, and many of us frequent both sites.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
You need a good LLMD who can properly treat you for Lyme and evaluate you for common coinfections like babesia, bartonella, ehrlichia and others.
Keep reading and keep posting!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Tracy9, Thank you for the site. I am awaiting my approval. Always nice to have friends!
bettyg, Thank you very much for the link! I read it through and feel like I migh have some better idea but know I have more to learn.
Dekrator48, I have printed it off and only scanned the first couple of pages but will read it during my lunch today.
I just feel so lost and start to see there is so much to learn. Maybe with the new knowledge and finding a local LLMD I will be able to fully conquer this!
Thank you again for the support and show of understading! Cynthia
-------------------- Getting better it feels like. Added Colloidal Silver to the ABX, Olive Leaf and Cat's Claw. HUGE difference! Posts: 18 | From Raleigh, NC | Registered: Jul 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic