I am a 41 year old man who just got the call this morning from the Orthopedist. I have been having the worst bone and joint pain. I have a bone condition that makes my femurs fracture so I have steel rods in them. Anyhow, the Dr. did a blood test and told me that I have Lyme Disease! My WBC is high, my Eos and Lyme Ab?Western Blot Reflex are high as well. My Rheumatoid Arthritis factor RA Latex Turbid is 17.8 (normal is 013.9). My Sed rate is almost double what is normal (28) and my C-Reactive Protein is 22.7 (normal is 0-.49!).
I am in such pain and I fear that I am going to get worse. Please, somebody give me something to hope for or some good news. I was just put on Doxycycline (after an ENT has had me on Prednisone for the past few days).
I feel like crap. Is there hope?
Posted by Haley (Member # 22008) on :
Yes, there is hope, however it can be a long road to recovery if you have had Lyme for a while. I remember when I finally found out what was wrong with me, I got a positve Elisa test. I was elated. Thank God, it's only a bacteria we'll just knock that thing out. Not so.
It's a very complicated disease that takes a long time to treat but it can be treated.
You have taken the first step.
Posted by julielynne4 (Member # 20336) on :
Go to the "seeking a doctor" section and find a good Lyme-Literate Medical Doctor (LLMD).
You will need an LLMD for proper treatment.
Are you still on prednisone? Steroids of any kind are a very big no-no with lyme. They are a recipe for disaster.
It is a blessing that your test showed the Lyme, and you are in the right place here for information and support.
JL
Posted by TVWriter (Member # 24612) on :
It's funny, my ENT said continue the Prednisone. I told him no. He said that I need to finish it. I said no. Now he's up in arms.
Posted by Lymetoo (Member # 743) on :
I hope you are now off the steroids. It's really bad to be on them... but do not just STOP them without tapering them off.
There is hope!! Now you know what's wrong!! It can be a long journey back to health, but I did it... following 42 yrs being undiagnosed.
The RA and sed rate will likely come down once you are treated for Lyme.
Finding a really good LLMD is CRUCIAL.
Go to Seeking a Doctor here and someone will help you!!
Posted by TVWriter (Member # 24612) on :
I was on four pills for two days and then three pills for two day and that's where I stand. Why can't I just stop?
Posted by Carol in PA (Member # 5338) on :
Your sedimentation rate and C Reactive Protein are high, indicating inflammation.
There are a number of things you can do on your own to improve this. Reducing inflammation will reduce the pain.
If you started Doxy, you need info on liver support and on yeast. Antibiotics kill the good bacteria in the gut, causing a condition known as dysbiosis.
There is a topic at the top of the Medical forum called Quick Links. You'll find the Newbie Links in there. Look them over, and read as much as you can.
Carol
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TVWriter: I was on four pills for two days and then three pills for two day and that's where I stand. Why can't I just stop? [/QB]
Can cause a serious reaction. I think it can make your adrenals crash.. can be very serious.
What day were you to stop them?
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by TVWriter: I was on four pills for two days and then three pills for two day and that's where I stand. Why can't I just stop?
It sounds like you are tapering down on the prednisone, which is what you're supposed to do.
I took prednisone once, for a week, with the tapered dose. It helped the body aches and the headaches, and didn't seem to cause any other problems.
But...it caused awful digestive upset. I didn't take the very last dose of it, which was only 1 or 2 mg.
Carol
Posted by Keebler (Member # 12673) on :
- Please don't just stop. It will shock your body and put more stress on your endocrine system and be quite serious. Tapering off is safer.
You are now taking doxcycline to balance this out, so, since you will be tapering off and over prednisone in the next couple of days, I think you will be fine. Again, just stopping could put you into adrenal shock. Not good.
You might add some good adrenal support supplements as you taper down.
Cordyceps is the basic one. Ashwagandha or Siberian Ginseng (NOT regular Ginseng as that is too stimulating. Must be Siberian). Vitamin B-5 is good, too.
As Carol suggests, since you've started on Doxy, you will need LIVER support. MILK THISTLE is the most common.
A good quality MAGNESIUM is important and so is a good FISH OIL.
You might want to copy these links to your computer file for future reference:
In their search bar, just pull down from products to articles for access to a fabulous library backed with solid research citations for every article.
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Posted by Keebler (Member # 12673) on :
- Backing up. It's very late now in your time zone so I hope you are settling down for the night. Rather than be upsetting, this might work out to be a good thing. Knowing what is going on, being active in working on a successful outcome, etc.
It is a rough patch in the road and a rocky road. Most important: Find a very good LLMD (lyme literate MD).
BTW, ENTs love to give steroids. Very few understand that lyme can cause a lot of the vestibular symptoms. Drop all doctors who are not LL. You did not say what your ENT is treating you for but this should cover it:
================
All about EARS: ------------------
For those who are sensitive or pained by even normal or soft sounds (sounds not even at noise level):
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by merrygirl (Member # 12041) on :
you cant jsut stop steroids you must wean! you could get really sick.
Posted by Keebler (Member # 12673) on :
- Basic support supplements - you may want to know more before you get Singleton's book delivered to you (it will offer you many answers).
I suggest getting some sort of good basic adrenal support at least by the last day of the last prednisone. You may be able to get some at a local health market. Just NEVER buy any supplement that is supposed to BOOST anything. SUPPORT is the key. This explains what adrenal support is:
There is hope always hope. But if you have Lyme, predinsone can make it worse. It is an immunosuppressant and can worsen symptoms. It is important to not take any corticosteroids when you have LD.
If you need an LLMd go to www.ilads.org click on the contact link, you can email or call them for a good LLMD referral.