posted
I was diagnosed with lyme in 9/04, -- Doxy for 5 weeks, then doctor ran 30 test, said the lyme was gone.
Got really confused and exhausted, went to infectious dr on rocphen iv for 4 weeks. 12/1- 12/31
Brain fog all gone, but have bad joint pain in my knees, neck, hip etc. Is this just normal recovery period, how long should this last? Should just push through it?
'm not getting much excercise, because I feel pretty worn out in the muscle and joints later.
Do all LLMD not except insurance?
Its hard to figure out if your getting better or just gliding through.
Posts: 19 | From Springfield, Va , USA | Registered: Feb 2005
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
kmr: I'm too fatigued right now to make an extensive reply, but it sounds like you still have Lyme Disease. Have you contacted either of the doctors who previously treated you regarding your continued problems?
When did your joint pain begin? Do you have pain medication? Were you tested for or treated for any of the co-infections?
What changes have you made to your diet? Which supplements have you been taking?
Take care, Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
KMR, I'd say you haven't been treated long enough, hence the continuing symptoms.
My son was diagnosed/ started treatment in 12/04 probably infected 8/04. He did 30 days of doxy, omnicef, zithro, all oral. Then he went on IV's of rocephin [10 weeks]. He's now doing IV's of zithromax, with mepron, artemisinin. The doc will probably be replacing the mepron with plaquenil next week, because he had an awful rough time on mepron.
I bring all this up because you two were very close in your diagnosis date. Your treatment is intermittent at best, while his has been constant with slight improvement.
May want to find another doc ?
Take a hot bath with epsom salts, for your leg pain. Soak for a while and keep it hot, while drinking a quart of warm water. Some add regular salt, and aloe vera to the bath as well. Really seems to help alleviate the pain for a while.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
When did your joint pain begin? -- The same time the exhaustion and fatigue/brain fog in aroun 10/04 - its just has been progressing
Do you have pain medication? Gave me celebrex that was it. I was told to see a ortohopedic. My GP thinks i'm cured? My infectious dr told me to see the ortho?
Were you tested for or treated for any of the co-infections? Good question, I know the GP tested me for other disease, hep c, etc I'll call my infectious dr, and find out what if they tested me for any other infectious, they did test for all the rheumo
What changes have you made to your diet? None - just grapping an eating while i go along
Which supplements have you been taking? when i remember multi, vit E, Calcium
Should I find another Dr - I feel like i'm getting caught in that cycle of not getting the right help.
Posts: 19 | From Springfield, Va , USA | Registered: Feb 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Yes, it does sound like you are stuck in a cycle. This isn't uncommon with Lyme patients. Traditional medicine has said Lyme is cured after 2-6 weeks of antibiotics. Unfortunately, many doctors as a rule will not recognize any Lyme symptoms after a course of antibiotics.
It's like a Dr. saying a tumor doesn't exist because you've already had chemo.
I got an LLMD (lyme literate medical doctor) in Fairfax. An LLMD isn't an official specialty, like neurologist or rheumatologist. But it is a doctor who has experience succesfully treating Lyme, usually with longer term antibiotics, and with diagnosing and treating coinfections.
If you want, I can email you my Dr's contact info. She does take some insurance.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Posts: 19 | From Springfield, Va , USA | Registered: Feb 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm sending you an email. I found her by contacting the local Lyme support group. Look under the support group link upper left. They meet once a month.
-Aniek
Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Lymes is a Long term thing-- as in years-- unless you get treatment within days of being infected-- I have had Lymes for 19 years--17 of witch I had no idea what was wrong with me. I was lucky enough to find out about Gluecosmine sulfate about 12 years ago. It Really Helpes with joint pain -muscle pain and tendions-- I have spent many hard earned dollars on it and it was worth every penny. The price has Really dropped too. Used to be about $75 a month-now its about $10--- look up my other posts-- where I have gone into more detail on Gluecosmine sulfate.--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
posted
First, see an LLMD. It sounds like you still have some little buggers in you messing you up, and they need to go! Once you are feeling better you may want to try exercise. I've been a runner for years, until joint pain, which I thought was from a running injury, was eventually led to my diagnosis with LD. I think I actually hurt more when I don't run than when I do. In any case, I think this signifies trouble, and you should see a doctor. The joint pain was my only symptom - I couldn't even straighten my legs when it was bad. I'm back to doing high miles like I used to, with a touch of joint pain, normally - but thankful that's all I'm dealing with. Just this past week, I've experienced a flare in symptoms, after 8 months of feeling pretty symptom-free. It's becoming clear to me that once diagnosed, we must always remain watchful, to say the least. I don't recommend exercise until you see a doctor, but once you go to an LLMD (don't bother with the others; a clear waste of time), and your symptoms improve, you may want to see if regular walking or running actually helps.
Posts: 32 | From Tobyhanna, PA, USA | Registered: Apr 2004
| IP: Logged |
posted
You've been given some good info, but I'd like to add -
Be sure to have 2 hours between the antibiotics (abx) & acidophilus - before and after. If taken too close together, the abx will kill the acidophilus before it has a chance to help you.
The acidophilus kills good bacteria along with the bad bacteria, so the good has to be replenished.
Also, be sure you take enough each day. In his "Diag Hints & Guidelines", Dr B recommends taking 6 capsules a day (2 capsules with each meal). http://www.ilads.org/burrascano_1102.html
Print a copy if you don't have one. It's about 32 pages of excellent info. Read pages 24 & 29 where he mentions acidophilus.
I'm not a dr, but this is what worked for me:
May have to take it with snacks between meals if you're taking abx with meals.
I always took the acidophilus 2 hours after the abx in the evening so that it would have all night to help before I hit it again with more abx in the morning.
I've had a few people laugh at this, but it worked for me.
Keep in touch & let us know how you're doing.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
posted
BTW, a regular dr [affectionately known as a DUCK here] will not know anything about co-infections. Try this...ask your GP to test you for babesiosis. Watch the look on his face!
IF he's ever heard of it, he'll say it's VERY RARE and you couldn't possibly have it! HA!
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!
oops! 
Printer-friendly view of this topic