posted
first off thanks for having this site here for everyone and myself!
After having lyme disease for almost two years seven months of which I had 3.5 bouts of lyme arthritis I entered into a conventional treatment of two months worth of doxycycline which I have been off for about a month.
My body seems to be recovering quite nicely. I feeel like a 13 year old guy when my testosterone levels increased...lol.
My one complaint is that my affected knee doesn't feel quite right. It clicks a small bit when I extend it all the way. It also has a small amount of inflammation in it. I can run on it without pain however if I try to do leg extensions I get a small amount of discomfort. I am wondering if this symptom will ever go away?
How long did it take for you to recover from lyme arthritis?
One thing that is troubling me is that I had a bulls eye rash on my right glute that was blown off by two doctors that said that since it itched it probably wasn't lyme disease. I can live with their diagnosal however I can't live with the fact that I believed them. You see I have a degree in environmental science and they totally discredited me and I just sat back and let them misdiagnose me.
that is the rub that seems to be chewing me up inside...
on a positive note I did tell a guy in a restaurant that he had lyme disease. This twenty year old guy was working in the kitchen of a restaurant that I happened to enter. He had the same lyme arthritis symptoms that I had. A swollen knee and pain in both of his shoulders. The poor guy was a camp counselor the prior summer and I believe that he got it then.
Posts: 23 | From pa | Registered: Jan 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Don't be too upset about believing the doctor's when they told you it wasn't Lyme. You were able to find one that believed you eventually? Was it a LLMD?
I think a lot of people have the same problem. You go from doctor to doctor and they all keep dismissing your symptoms. I was told that my severe joint pain was from "getting older" and I'm in my 20's. I too have met several people that have had all the signs of Lyme, even the rash and yet were still told they don't have it.
It's great that you're getting better. Did you only do 2 months of doxy? Are you also doing alternatives? It's unusual for an infection that has gone on for years to respond so well to a single antibiotic unless herbs or other alternatives are also being used.
posted
actually it was an orthopaedic surgeon that diagnosed me. He was perplexed that my meniscus wasn't torn like we originally thought.
Posts: 23 | From pa | Registered: Jan 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I don't have any medical training, but from what I've read on various message boards and through the leading Lyme disease books, it is extremely rare for someone who has had Lyme disease for years to be cured in 2 months with doxy. Doxy alone is very useful in early stages of Lyme, but not as useful alone in late stage.
There are 3 forms of Lyme bacteria: Spirochete, cyst and cell-wall deficient. As far as I know, doxycycline does not kill the cystic form of lyme.
There is also the issue of co-infections such as babesia, mycoplasma, erlichia and bartonella. Many people with Lyme also have a co-infection. Your risk for co-infections should be addressed as well.
I would strongly suggest that you contact a LLMD or a LLND. Especially if you are still having symptoms with your knee being painful. A LLMD would be the best person to talk to about whether or not the knee pain is from damage or an active/chronic/under-treated infection.
quote:Originally posted by 79inpa: [QB] thanks for the replies. How are your affected knees doing after treatment?
- Who are you speaking to??
Summer is right... 2 weeks of doxy won't cure much unless you took it immediately after being bitten. Even then, it's usually not enough.
In other words, you don't have joint damage, you have an active infection. Just a non-medical (but experienced) guess.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I would agree that such a short course of Doxy would be questionable. But who's to say how this person's immune system is? Maybe he's healthy as a horse, on a good diet, doing all the right things. I do believe that building the immune system is the best fight for us. But I also believe in antibiotic treatment. Whatever it takes to get well.
I might add that although I was very early stage (extreme early disseminated) I still have the tendonitis that resulted from the Lyme. Is it disabling? No, it's annoying at times, but certainly not stopping me from leading a normal life. I totally believe that this disease can cause permanent damage to joints, that's why my elbows still hurt and tendonitis kicks in.
I believe there can be lingering issues to the body, just for having gone through the shock of the illness and antibiotics. God made us all different in makeup. And of course, there is always the chance of relapse: in anyone.
I hope the original poster of this thread looks into all his options. Certainly treating a bit longer, even naturally. I hope he goes to a LLMD or LLND.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
are there any in northeast pa. this is ****ing me off because if llmd's were advertising in my area i could have gone to see them from the start. I realize that they would probably get in trouble for advertising but they could at least advertise ..some experience in treating lyme disease.
Posts: 23 | From pa | Registered: Jan 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Most LLMD's won't advertise. Some of the more outspoken LLMD's have suffered serious consequences for speaking up about chronic Lyme. There are too many risks for LLMD's to advertise their services. Often times the MD's who list Lyme disease experience are going to be Infectious Disease specialists or IDMD's.
Usually IDMD's use a treatment protocol of 2 weeks to 2 months of antibiotics and then if you still have symptoms you are either a hypochondriac or have "post lyme syndrome" which is an untreatable continuation of harmless symptoms in their eyes.
We are not allowed to post individual referrals on the boards, but people who know of someone in your area can PM you. If you don't get any responses here, start a new post in the seeking forum which has a topic line of "Seeking a LLMD in PA."
Have you looked into some of the treatment protocols? Dr. B's guide is listed at the top of this board. It's a very useful document to read which is written by one of the leading experts in Lyme research and treatment. There are also many other options other than antibiotics that may be useful to you.
Some LLMD's mainly do antibiotics, others do mainly herbs and natural treatment, and others do a combination of both. It's helpful to figure out what type of protocol you want to follow and then find a LLMD that matches up.
Some other great books to read about Lyme and co-infections are:
The Lyme Disease Solution Cure Unknown Healing Lyme The Lyme Diet
posted
my knee is still getting moderate swelling under the knee cap. Has anyone else had this? Does it go away on it's own after a while? Is this telling me that I have major cartilage damage. My orthopaedic specialist told me that I have "some cartilage damage under my knee cap". He didn't tell me exactly how bad it is.
really could use some comments here.
Also I am seeing a llmd here in about a month.
Posts: 23 | From pa | Registered: Jan 2012
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posted
I found a doctor locally that treats lyme patients. He recommended that I go back on doxy for a few more months. He based this on the fact that my thyroid gland is a little sore and my blood pressure is still elevated. He also prescribed daily vitamin b shots. Has anyone ever tried these?
Also I have never had a herx reaction while being treated with doxycycline. I have however gotten light years better while being on the drug. In fact my only complaint is in my affected knee. It swells up when i exercise on it and it does click a bit.
Is there any chance that my doctor is wrong and I am cured of this disease and am just experiencing the damage from it?
Posts: 23 | From pa | Registered: Jan 2012
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I used to have my lyme arthritis before I got the real burgdoferi .But once I got steroids( I did not know about lyme than ) the knee pain started again and the knee swolled up as well folling with my thyroid glands that were sore.
Soon enough my hips start hurting.My knee cracks all the time. This is the first lyme that I got decades ago that spread to entire body in severe arthritis.
I would stick with the treatment.I also took B12 shots that were really good ones and will give you some energy.
With doxycycine you got better and you might as well be killing other infections as mucoplasma that are very common.
The fist time that I have had fever and my knee got swollen I was not treated for lyme and when was swallen after many years the x ray showed a drop of water that actually was a cyst of lyme hiding there for years.I would suggest you to take cyst busters as well.
If it hurts it is infected.
Posts: 1379 | From disable | Registered: Aug 2011
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posted
The only symptoms that presented with me was "joint arthritis" one day in almost every joint. I have been on doxy, azith and flagyl pulsing for almost 4 months now and the joints are definitely better, but still lingers in some. It was almost two months on all the meds til the knees loosened up - they were the last.
I was on doxy first before I got to an LLMD and that wasn't doing anything by itself.
Don't forget to take all the supplements to to protect your body from the antibiotics
Posts: 22 | From North Carolina | Registered: Oct 2011
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posted
so if i had lyme arthritis for seven months what do you think that the chances of me getting my my knee back to 100 percent are?
Posts: 23 | From pa | Registered: Jan 2012
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posted
I'm finding that teasel root tincture and curcumin capsules are able to take down knee swelling.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
do you have to take the tincture every day or do you take it and then the swelling stays away?
Posts: 23 | From pa | Registered: Jan 2012
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