posted
Can I ask - How many people are having bone, muscle and ligament issue's?
I have Chronic or Late Stage Lyme and I am 4 years in to the treatment; though only aggressively treating it - it seems, this last year. Initially I did the Doxy, 4 times over 3 year.
Then last August (2011) we started aggressive treatments when the doctors realized the bacteria hadn't died, but was still an active infection. So I did Doxy for 6 months. When that didn't work, I was treated with the "appropriate Insurance covered" 6wks IV Rocephin, (two months ago) and now back on Doxy, Plaquenil, Naproxen Sodium, Tizanidine, Probiotics, Amitriptyline, 50,000 units of VitD3 (once a week), and VitB12 injections (bi-monthly).
Over the last year - I've been having tendon/ligament pain. Then I was having major bone pain - elbows, upper arm bones, and femur bones. Now - it seems I am either pulling or tearing my muscles - tore my rt thigh muscle just getting out of bed!
How does that even happen? Then,,, I saw a Neuro doctor for tingling and nerve pain. Which lead to an MRI head (clear) - neck (not clear) which led to my seeing a surgeon this Thursday.
3 vertebra in my neck are being compressed and pressing against my spinal cord cutting off circulation. Anterory Cervical Diskectomy is what they are calling it - removing 3 disks in my neck, putting in bone and then locking the 4 bones together with titanium plates and screws.
I am trying hard not to get overwhelmed, but sometimes you just wonder if you're ever going to get through to the healing side of this. So I ask - has anyone been having this issues??? So sorry for being long winded.
-------------------- Bite: 5/08, Bulls-eye rash; test:neg. Doxy Treated. Relapse 5/09: test: neg. Doxy Treated. Relapse 6/10: back2bake test-neg: Request Western Blot: POSITIVE Currently - 4th round of treatment. "Sharing my Experience, Strength and Hope." Posts: 35 | From Middle TN | Registered: Nov 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, you desperately need the best LLMD you can find ASAP. Your treatment is quite inadequate (not blaming you, but your doc is not up to speed at all). Post in Seeking a Doctor. ANd list several surrounding states that you would be willing to travel to (or as far as you need to travel, really).
Also, (and I am not a doctor, but I am in the health field and know a lot about it): I would NOT recommend immediately having the proposed surgery. That's really extreme. Maybe you need it, but there are other alternatives to try first, mainly, Prolotherapy. Go to [URL=www.GetProlo.com[/URL] www.GetProlo.com and read all about it. They also have docs listed there. There is one guy in TN that I know of who is good (there may be others, too).
YOu need aggressive Prolotherapy IMO, along with aggressive treatment for your infections. Then, you can see if you need the surgery. It might even be ideal to be evaluated by a top Prolotherapy doc first, even if he isn't the one to always treat you. I know who is good around the country.
Also, if you do need surgery, it's quite possible that a less drastic surgery, along with a lot of Prolotherapy, would be sufficient. Again, you need the evaluation of a top Prolo doc to see what they say.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
someone else on here is going thru similar spine issues...will try to find link but LN not working well right now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I'm a little confused. I was just reading about the prolotherapy which if I'm understanding correctly it causes inflammation, which in turn causes healing.
What I don't understand is if you already have inflammation then why can't you heal without prolotherapy? If the area is already inflamed would adding more inflammation cause problems?
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
maybe you should talk to sammy. search this:
Topic: 10 Broken Vertebrae! *Update 6/8*
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes, I've been having a rough time of it with odd injuries to places on my body that I've never had problems with injuries before this year.
Wrist injury (left side), thumb joints (both hands). Took weeks and weeks to heal, and the muscles in my wrists & hands seem soooooo weak and unstable.
Strangely, these injuries seemed to happen in my sleep - I'd go to bed fine and wake up in excruciating pain. Had to wear wrist brace on left, and a sock on the right (to keep my thumb from getting in strange positions)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Have you had a bone scan? The compressions would suggest that you may have some osteoporosis going on. Treating with Forteo can build bone back: other treatments only address bone loss. Osteoporosis could also explain increased pain.
I have similar issues, and recently refused surgery of any kind. I have found that a year of Tai Chi has helped me a lot. I also use Baclofen, which short circuits communication between my spine and muscles. I was having a lot of muscle problems because the problems with my spine somehow made my muscles hyperreactive.
The tingling and numbness would be from the spinal compression and narrowing.
I would also look at the effects of your meds. Naproxen really does a number on the GI system and causes rebound problems, while not really addressing the cause of your pain.Plaquenil can cause muscle problems. Amitryptilene caused tingling for me, burning and painful tingling. Go easy on the Vit D3. That megadose can cause reactions. Much better to get a good softgel or liquid D3 and take up to 3,000 units/day.
Antibiotics can affect bones, and have other side effects. After 6 years of Lyme treatment, I found that inflammation finally went down when I went OFF meds. Current theories are that inflammation contributes to osteoporosis.
I don't know your age, but some of this stuff is semi-normal after menopause, though your degree of problems is worse than most. Do you have osteoarthritis?
I would also request autoimmune testing, especially an ANA (lupus and other disorders) and rheumatoid factor. In the context of Lyme, my own belief is that autoimmunity can be triggered by the infection itself.
I was never sure if the autoimmune problems would go away with long term treatment, but after 6 years on abx, autoimmunity was worse. My own autoimmune tests have improved greatly off meds, frankly, though I still cannot go in the sun.
Main message: don't do surgery right away, and see an osteoporosis specialist. Try alternatives like Tai Chi or even physical therapy/massage. Good luck, I know how it feels.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
posted
I have always been very athletic and had never torn any muscles or broken any bones prior to my lyme diagnosis. In the past few years, I have twice torn a hamstring muscle. The amount of bruising afterward was substantial. I think it has alot to do with hypercoagulation.
To this day, my mine issue still remains leg muscle and joint pains.
I am negative for bart on several tests but always positive for lyme.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Tagging on to what pug has said.....another alternative is water therapy with the direction of a PT. It supports us and our weaknesses while stretching everything gently and building strength.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your lyme treatment is inadequate. You don't have a lyme specialist treating you, sorry to say.
You can read the Burrascano Lyme Treatment Guidelines and learn what good lyme treatment is. You need to STUDY this document.
For example, you have never been treated for babesiosis and bartonella. Read in Burrascano what meds are used to trreat these diseases.
Read in Burrascano about "combination therapy" meaning how you need at least 2 different antibiotics simultaneously to kill lyme. You have just been given doxy and then rocephin and now back to doxy and plaquenil.
Lyme can easily evade one antibiotic at a time by changing forms. So, all of that treatment was wasted. You won't get well until you are put on good treatment for lyme and coinfections.
You need to learn what good treatment looks like so you will know when to change doctors. You can't remain uneducated and still get rid of this disease.
I can give you the name of an e xcellent lyme doctor in Washington D.C. who will do telephone appointments with you after the first in-person visit. She answers patient emails even on the weekends. So, that's how you can get good treatment while living in your state and only having to travel very rarely.
Also, use the internet to look up the side effects of the non-lyme meds you are on. Perhaps they are causing some of your tearing problems. Speaking of the Naproxen Sodium, Tizanidine, and Amitriptyline. Lyme patients generally don't take these meds, so I am totally unfamiliar with them (except I know that Naproxen is an anti-inflammatory.)
Read in Burrascano all the supplements that a lyme patient is required to take and start taking them. Lyme depletes your body of many things. When you restore these things (like magnesium, etc.), many of your symptoms may go away.
Surgery is generally very hard on lyme patients. It makes the lyme advance rapidly. Lyme takes advantage of your weakened immune system after surgery and you can really go downhill. So, the advice for lyme patients in general is to put off surgery as much as possible until you are on top of this disease.
Look at pages 9-10 of Burrascano for a list of lyme symptoms. You won't see bone pain, but you will see joint pain and dental pain. You won't see muscle tearing. However, perhaps you are actually having ligament tears. If so, it may be a side effect of some medications you have taken or are taking.
For example, Levaquin is known to cause tendons to snap and tear off of the bone. This can be avoided by taking sufficient magnesium.
Let me know if you want the name of the D.C. doctor. I know it is difficult to travel when you are so sick, but in your case it seems that it is the only way you are going to get good care. Some states just don't have real lyme specialists.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Only 6 weeks of IV isn't long enough. Most people don't commit to IV unless they can do the time which is usually at least 6-8 months and frequently longer depending on what your coinfections are.
I have bone pain, muscle burning and joint issues and I do have Bartonella along with Babesia and Ehrlichia. The cocktail I am on takes the pain away hours at a time and minimizes the intensity when it is painful.
Please find an LLMD somewhere that is ILads trained. It can make a world of difference.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
posted
The compression of 3 vertebrae in the neck and narrowing of the spinal canal (with pressure on the cord) has nothing to do with Lyme, or co-infections.
Surgery addresses the symptoms, but not the cause. It is important not to get distracted from other legitimate diagnoses by always focusing on tick borne diseases.
For most everyone, pursuing alternative treatments before agreeing to surgery is usually a better way to go, and it is true that anyone whose immune system is affected by Lyme - and by meds - can have a hard time with surgery.
Lightfoot, the suggestion of water therapy is appreciated, by the way. Thanks!
Money can be a big problem when a medical problem requires going out of the system. LLMD's, supplements, and IV's can all cost a lot. If money is a problem, we found some help from an integrative medicine doctor (functional medicine actually) who happened to be within the insurance system.
Magnesium by IV can help the brain calm down, though it also causes weakness and depression. I have not found oral magnesium to be that helpful.
For spine issues, baclofen, as I said, is the only one I can tolerate, and it helps muscle spasms tremendously. Some doctors suggest neurontin or amitryptilene but as others have said, I would be careful about using any more meds.
The main question is: why the vertebral compression? I would definitely have a bone scan, and some hormone testing as well (sex hormones, thyroid, parathyroid, adrenal). Did you have an injury or whiplash of any kind? Are you menopausal or post-menopausal?
Good luck!
Posts: 108 | From US | Registered: Apr 2012
| 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)
So sorry for being long winded.
![[Smile]](smile.gif)
Printer-friendly view of this topic