Aa
Lyme Disease and co infections effecting joints
I have Lyme, Bartonella, Anaplasmosis, and possible Babesia. I have lost my ability to walk and have lots of PT and OT. My question is, I'm assuming it's my SI Joint, but the pain is INSANE. I can't even touch the area it is so painful. It is radiating down my leg. My lower back hurts as well, but it's the pain in the middle of my left butt cheek. It keeps me up most of the night,and is a constant pain that won't go away. Walking is excruciating. Do you think it's just the Lyme in the joint or something else. This is day 5 now and it's just getting worse. Thank you for any advise, it's greatly appreciated!!
Good for your doc! And be sure to keep the Lyme doc up to date on your other ailments, so she can try to work around them and cause you as little grief as possible. If the Herxing is too much, then the doc may be able to alter the treatment in some way to make it more tolerable.
Docs seem to get burrowed in to their area of meds and sometimes forget to take into account there are other parts of patients that need to be accounted for too. :) Keep us posted -- you go!
Docs seem to get burrowed in to their area of meds and sometimes forget to take into account there are other parts of patients that need to be accounted for too. :) Keep us posted -- you go!
Hey Jackie! I wanted yo let you know I went to my LLMD and was so interesting because before I even said anything she said, "We need to hit this one at a time". So we are focusing on the Lyme. Trying a different med.
I'm going to wait until tomorrow because they think that I have a herniated Disc in my L5. It's been excruciating! I have an MRI tomorrow. So I can't imagine Hexing and dealing with this pain at the same time. But will start very soon! Isn't that wild about the Periformus Syndrome? If it's not herniated, I'm sure it's that. Thanks again for your caring!
I'm going to wait until tomorrow because they think that I have a herniated Disc in my L5. It's been excruciating! I have an MRI tomorrow. So I can't imagine Hexing and dealing with this pain at the same time. But will start very soon! Isn't that wild about the Periformus Syndrome? If it's not herniated, I'm sure it's that. Thanks again for your caring!
That is SO interesting to me. There is not one place this darn stuff can't attack it seems like!!! Wow! They are not sure now, as they think I have a herniated L5, getting MRI tomorrow, but how I'm going to lay down on my back flat is beyond me??? If it's not, that HAS to be what it is!! Thank you fir telling me about it!! Really appreciate it!!
It was a new thing for me too! Mine didn't run down the sciatic nerve down my leg but concentrated in the outer buttock area. So, as I mentioned it made sitting very uncomfortable and would send burning up my back and in hips. I ended up getting a massager device that worked the hell out of the Piriformis muscle and let it relax so that it wouldn't put so much pressure on the sciatic nerve. Heat and cold packs helped too.
After I was diagnosed with Lyme disease, I came across many others who had this as one of their symptoms. The low-dose elavil that I'm on helps control the nerve pain, which became peripheral neuropathy after the Piriformis syndrome.
After I was diagnosed with Lyme disease, I came across many others who had this as one of their symptoms. The low-dose elavil that I'm on helps control the nerve pain, which became peripheral neuropathy after the Piriformis syndrome.
I just did a little reading on Piriformis Syndrome, and (for others here who might be interested) is associated with the sciatic nerve running down the back/hip area.
Learn something new every day!
Learn something new every day!
Thanks Jackie! It's much better but long trips are still a challenge or even sitting through a movie. On a couple of Facebook forums that I'm on, I've encountered many others who had this syndrome with Lyme disease. Yet my neurologist hadn't a clue what the cause was!
Weird the way these bacteria can affect each person for the most part, so differently.
Weird the way these bacteria can affect each person for the most part, so differently.
Bactrim or Septra alone probably won't affect Bartonella too much, but with Plaquenil it really could start killing it off.
From what I hear, you have to do this for 6 months for Bart to ensure good suppression of the infection.
From what I hear, you have to do this for 6 months for Bart to ensure good suppression of the infection.
Yeow! That's a new one on me. Thanks for the data, and glad you are better.
Is it Piriformis Syndrome? That was one of many Lyme symptoms that I had before I was diagnosed with Lyme. I couldn't travel or sit long at the computer or to watch TV, had to always be laying on one side or the other. It's a helluva pain in the butt - literally. I went to physio, massages, used heating pads and ice, did stretches and it eventually went away but it took several months. I still at times get it, but now more so feels like I'm sitting on a cactus. It will eventually go away with the Lyme treatment they tell me. Good luck!
and PS, that doc who said to me that her Lyme patients were 'all near death' clearly didn't understand Lyme -- I would not think it likely that anyone who is treated with the right meds for the right period of time would die from Lyme, tho a long-neglected infection could create heart problems etc. that could be serious. So I wouldn't freak over the concept, but would be sure to find a doc who really does know when to go beyond doxy and how to understand when that time has come.
From what I read, doxy is *not* effective against Lyme except within a few days or a week or so after infection, but many of us never know when we were bitten (I didn't -- never had a rash, and even if I had a rash, it might have been on top of a previously unseen tick bite, thus lengthening the time of infection and making doxy treatment not effective overall).
I went through 20 docs before getting my first Lyme test (which was positive), and Dr #20 said to me: "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and they are all ... near death." Exact quote.
I had an old friend who had Lyme years ago, so I knew it wasn't something to ignore, and found my way to a Lyme specialist.
So please be careful and know that docs telling you a course of doxy is all you need without regard to how long you may have been infected do not *in my non-medical opinion* know what they are talking about.
This is part of the confusion in the medical community, and it's up to the patients to realize it and deal with finding a true Lyme specialist.
Lyme bacteria can be killed by doxy, but only within a very short time after infection. After that, the bacteria hide in areas where the immune system cannot find them, and the infection persists basically forever until the right meds are given to reach the places where the bacteria are hiding. That is what so-called mainstream docs who follow the CDC/IDSA standards are missing.
If you ask your current doc if she is a Lyme specialist, she will say yes, because in her mind she is. But if she is going by CDC/IDSA standards, I would find a new doc. You don't have to tell your current doc you are getting a second opinion (and in fact, I would not do so, to avoid alienating the doc), but in my experience it would be the best money you ever spent.
I just searched online for -- indiana lyme -- and got a lot of promising links of patient-oriented groups who would likely have information on Lyme docs near you. Lyme docs who follow ILADS diagnostic and treatment standards often don't advertise, because state and local medical boards tend to follow the line of the CDC and IDSA that Lyme is rare, hard to get and easy to cure, and can try to make trouble for the Lyme docs. But docs who think broader thoughts about Lyme etc. can be found, with a little discrete snooping around online and also by email to -- contact [at] ILADS [org] -- to get the names of member docs near you.
Best wishes -- keep us posted!
I went through 20 docs before getting my first Lyme test (which was positive), and Dr #20 said to me: "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and they are all ... near death." Exact quote.
I had an old friend who had Lyme years ago, so I knew it wasn't something to ignore, and found my way to a Lyme specialist.
So please be careful and know that docs telling you a course of doxy is all you need without regard to how long you may have been infected do not *in my non-medical opinion* know what they are talking about.
This is part of the confusion in the medical community, and it's up to the patients to realize it and deal with finding a true Lyme specialist.
Lyme bacteria can be killed by doxy, but only within a very short time after infection. After that, the bacteria hide in areas where the immune system cannot find them, and the infection persists basically forever until the right meds are given to reach the places where the bacteria are hiding. That is what so-called mainstream docs who follow the CDC/IDSA standards are missing.
If you ask your current doc if she is a Lyme specialist, she will say yes, because in her mind she is. But if she is going by CDC/IDSA standards, I would find a new doc. You don't have to tell your current doc you are getting a second opinion (and in fact, I would not do so, to avoid alienating the doc), but in my experience it would be the best money you ever spent.
I just searched online for -- indiana lyme -- and got a lot of promising links of patient-oriented groups who would likely have information on Lyme docs near you. Lyme docs who follow ILADS diagnostic and treatment standards often don't advertise, because state and local medical boards tend to follow the line of the CDC and IDSA that Lyme is rare, hard to get and easy to cure, and can try to make trouble for the Lyme docs. But docs who think broader thoughts about Lyme etc. can be found, with a little discrete snooping around online and also by email to -- contact [at] ILADS [org] -- to get the names of member docs near you.
Best wishes -- keep us posted!
I know the Doxy I'm on is for Lyme and Anaplasmosis, the Septra for Bart. So yes, you are right Jackie. I never really thought about it like that. The Herxing for me was INSANE!! But I finally got to the full dose after 6 weeks. I guess I never really thought it was a lot all at once but it really now that you guys point that out. I'll take to her tomorrow about it for sure. I also take Plaquinel for my Lupus, have for almost 5 years, but I know that is taken for Babesia. So really we are attacking everything! You are very helpful, think you so much!!
Wow, the Septra did? That is really interesting because I keep expecting a tiny bit of relief of pain over these last 9 weeks and have had none what so ever. I'm just talking the slightest amount. So I really wonder!? Thank you so much for sharing that with me!! Defiantly going to talk to my LLMD tomorrow, not sure is she is switching the antibiotics or not at this point. But I'm seeing if there is another option for the Bart.
You are dealing with a lot all at once -- is your doc trying to treat everything at the same time? Hitting one infection till its gone and then moving on to the next once may well be less stress on the body. My doc treated me for babesia first, and then when it was gone, began treatment for Lyme. You might ask your doc about that, and if you don't get a satisfactory answer, you might consider getting a second opinion from another Lyme doc.
There are no standards or tests to be an 'LLMD' and they don't all do things the same way, because this is a fast-developing area of medicine. Take care --
There are no standards or tests to be an 'LLMD' and they don't all do things the same way, because this is a fast-developing area of medicine. Take care --
Like everyone said Lyme and co-infections are most likely to blame but if you are like me the Bactrim or septra actually gave me the insane pain. There are a few drugs that are now known to do that and there is a class action lawsuit from it. Just another thing to be aware of.
Thank you so much for sharing that with me RobNOrl!! I'm so sorry to hear your in such pain and all the crazy, but I know needed Herxing. What you are saying makes sense. I'm curious as I have been on Septra for 8 weeks now, did this start because it's killing the Bart right now? I really wonder if the Lyme has gone into cyst form and doing what you were saying. That's very helpful..I see my LLMD Wed... So glad!! I'm wondering too is mine is the SLE lupus causing extra inflammation. Usuall I would take a course of steroids, but now know this is no longer an option. I just pray it doesn't take the full 2 years to treat that they are saying it might take,due to the severity of the state my body is in.
It sounds like the Bartonella is starting to act out with some of its usual symptoms since the Lyme has been suppressed.
I've been taking Houttuynia Microbial Defense and Lakato Bark Microbial Defense for Bart for a week, and I'm starting to Herx pretty bad from it.
The soles of my feet and my shins have been sore all day, my ankles and knees are popping and sore, and even the Achilles tendon seems tender, and I've had some weird headaches come and go.
My hips are sore, I had some major fatigue come over me this afternoon and couldn't go on til I took a nap, as well as lower back pain for the past 4 days.
and when I was about to fall asleep for that nap my leg kicked out violently, and I've had bouts of brain fog throughout the day.
I'm taking Bactrim, which is another form as Septra, for stopping the Lyme from reproducing, as well as IV Rocephin and Omnicef for the Lyme,
so you probably need to start addressing the Bartonella, but of course, ask your LLMD.
I've been taking Houttuynia Microbial Defense and Lakato Bark Microbial Defense for Bart for a week, and I'm starting to Herx pretty bad from it.
The soles of my feet and my shins have been sore all day, my ankles and knees are popping and sore, and even the Achilles tendon seems tender, and I've had some weird headaches come and go.
My hips are sore, I had some major fatigue come over me this afternoon and couldn't go on til I took a nap, as well as lower back pain for the past 4 days.
and when I was about to fall asleep for that nap my leg kicked out violently, and I've had bouts of brain fog throughout the day.
I'm taking Bactrim, which is another form as Septra, for stopping the Lyme from reproducing, as well as IV Rocephin and Omnicef for the Lyme,
so you probably need to start addressing the Bartonella, but of course, ask your LLMD.
I appreciate all the questions and understand! Thanks Jackie!
I have been in treatment for 9 weeks. I go to a LLMD THANK GOODNESS! I am on 400mg Doxy and 2 Septra a day. Took 5 weeks to get to that point with all the Herxing. But I finally got there! I go see my Dr. on Tuesday, so will ask her opinion. My PT has not seen this part yet, but I see her tomorrow..curios what she thinks. She has been very good about the whole Lyme stuff. I know with my Lupus ( I have had that for 5 years with positive SLE antibodies) it way effects my joints, but this over the top!!
I did have radiculopathy in my cervical, thoracic and lumbar spine as well and protruding and herniated discs, especially the T10. But this is different I think than Sciatica, it's more my hip and left butt cheek, but noticed my knee is hard to turn also.... Crazy! Thanks again for your kindness! What do you think?
I have been in treatment for 9 weeks. I go to a LLMD THANK GOODNESS! I am on 400mg Doxy and 2 Septra a day. Took 5 weeks to get to that point with all the Herxing. But I finally got there! I go see my Dr. on Tuesday, so will ask her opinion. My PT has not seen this part yet, but I see her tomorrow..curios what she thinks. She has been very good about the whole Lyme stuff. I know with my Lupus ( I have had that for 5 years with positive SLE antibodies) it way effects my joints, but this over the top!!
I did have radiculopathy in my cervical, thoracic and lumbar spine as well and protruding and herniated discs, especially the T10. But this is different I think than Sciatica, it's more my hip and left butt cheek, but noticed my knee is hard to turn also.... Crazy! Thanks again for your kindness! What do you think?
Sorry to hear about all this!
Given your list of infections, it could be a lot of things -- what does your doc say, and what treatment are you taking for your infections, and how long have you been on treatment?
What field does your doc practice in -- infectious disease, internal medicine, etc.? And what does your physical therapy person say?
Sorry for all the questions, but the more data we have to match with our own experiences, the more of a response you might receive back.
Take care!
Given your list of infections, it could be a lot of things -- what does your doc say, and what treatment are you taking for your infections, and how long have you been on treatment?
What field does your doc practice in -- infectious disease, internal medicine, etc.? And what does your physical therapy person say?
Sorry for all the questions, but the more data we have to match with our own experiences, the more of a response you might receive back.
Take care!
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
with herbals, and part with ABX. That's what I'm doing. And I've heard of someone who cleared their Bartonella with 6 months of Houttuynia Leaf Extract, (or tea) alone. I hope you feel better soon.