joint/ tendon/connective tissue problems
I've had CFSi for 29 years. Last June I started getting swelling of joints and the tissue surrounding them (possibly the tendons). In July I got acute lyme (with rash) and was treated with doxyi for 3 weeks. But the joint pain, and swelling have continued and is progressive-- more and more joints are affected-fingers, wrists, elbows, ankles, shoulder and feet so far, and the ones that are affected stay affected.
In addition to the swelling my affected joints hurt. They have a dull ache all the time, and a sharp pain when I use them.
I have been to a rheumatologist and he checked me for EVERYTHING and found nothing. He did find that in my Western blot I had one abnormal finding (Igmi P23). So he sent me to an infectious disease doctor. The infectious disease doctor basically blew me off. He said I don't have lyme and my joints don't look that bad to him!!!
I know lyme causes swelling of the joints, but from what I've read it migrates from joint to joint instead of staying in the affected joint.
Could Chlamydia Pneumoniae or HHV6 or EBVi be causing this?
I did start Valtrex in August and I'm due to start Vatcyte this week, but I'm afraid to start Valcyte until I figure out what this new problem is.
Also, it seems to be more that my tendons or connective tissue around my joints are affected than the joints themselves.
Does anyone else out there have the same thing? Do you know what causes it and how to stop it?
Are there any good articles that specifically address joint, tendon and connective tissue problems?
In addition to the swelling my affected joints hurt. They have a dull ache all the time, and a sharp pain when I use them.
I have been to a rheumatologist and he checked me for EVERYTHING and found nothing. He did find that in my Western blot I had one abnormal finding (Igmi P23). So he sent me to an infectious disease doctor. The infectious disease doctor basically blew me off. He said I don't have lyme and my joints don't look that bad to him!!!
I know lyme causes swelling of the joints, but from what I've read it migrates from joint to joint instead of staying in the affected joint.
Could Chlamydia Pneumoniae or HHV6 or EBVi be causing this?
I did start Valtrex in August and I'm due to start Vatcyte this week, but I'm afraid to start Valcyte until I figure out what this new problem is.
Also, it seems to be more that my tendons or connective tissue around my joints are affected than the joints themselves.
Does anyone else out there have the same thing? Do you know what causes it and how to stop it?
Are there any good articles that specifically address joint, tendon and connective tissue problems?
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Hi unsure and welcome,
When I began this protocol, it was for progressive MSi. But, coincidentally, I was getting very arthritic. I am now 69 years old and ALL my arthritis is gone - but it was agony while it was clearing.
I see that you are on so will post this and say more later.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Hi again unsure,
Many people do the whole protocol without ever being tested - like me. As my husband, a pediatrician, said at the beginning: these are not dangerous drugs, and there is nothing that is known to work (I was on Avonex at the time), so do it, if you want. I have - just finished after 4 years and 4 months. The supplementsi are very important.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Hi unsure,
I've developed something similar in my right knee. It's definitely above my knee joint and not in it. I'm currently on Valcyte and CAPi so I'm posting my Valcyte blog here and on the HHV6 board.
The knee began to bother me from squatting, kneeling and climbing up and down a ladder this past Fall and I can't shake it now. My Dr said he thinks it's from the over using it during my home project which I happened to feel well enough to do.
I prob pulled something which is having a hard time healing and it's agonizing at times. I'm hoping to get well enough soon to begin yoga again. I think that would help me. For now, my chiropractor also works on it and has found my quadriceps are weak and has given me an excercise to stretch and strengthen it.
You're wise to wait on adding anything new until you figure things out. The Valcyte has caused me to experience alot of neuropathy which has been excruciating at times but it's intermittent so tolerable. I've had some nerve pain before which I've chaulked up to FMSi and/or PA. (psoriatic arthritis)
I believe the supplementsi from CAP are making the Valcyte easier to tolerate. HERE's my Valcyte blog. (I felt it was relevant here because I'm still on CAP too)
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Unsure, 3 weeks of treatment is considered to be insufficient by many to prevent Lyme from advancing throughout the body. Infectious disease specialists are in general the worst referal that a person with Lyme can be refered to. I have never seen one. Find a good LLMD and get a consultation there. Your rheumatologist was at least looking for it, if not willing to treat it himself. Lyme treatment can be a very politically challenging situation. I hope you can get into treatment for it. It sound like it is moving quickly for you. It can manifests differently is each person. Clearly the rash is convincing for your exposure. CPni may be something that you have too so stick with learning about it and keep an eye to see if potential treatment is indicated for you as well.
Louise
My experience with the joints, tendons, connective tissues has been somewhat similar to yours. I have not been tested for any tick borne diseasesi although did have a tick embedded in my side for a whole day 35 years ago. Did not get a rash so did not worry about it at the time. Did not think NW USA had a problem, etc.
Have had Cpni IgG & IgAi titers elevated on lab test last fall. When I first added the Azithromax to my Minomycin I had swelling. Mostly my left ankle and foot but also my fingers were puffy. My ankle & lower leg turned red and stayed that way for a few weeks. Then the ball of my foot was numb so it felt like I was stepping on a rope. It has improved but still feels like I am stepping on something. Also now I have infrequent, shortlived pain in both feet. The soles of my feet use to burn a lot if I stood too long. This was most of my adult life as a matter of fact.
I was on another protocol for 3.5 years using Mino & Azith in subclinical doses. Then the CAPi since Sept. 08. I have had extreme pain in my wrists, fingers, shoulders and knees when using Mino and when quit using it the pain would go away for the most part eventually. When these areas were affected I could not lift my bed covers, lift a heavy mug of coffee, raise my arm up above my head, sit down or get up without grimacing with pain, etc. So glad the Doxyi I switched to recently is not affecting me this way so far.
I have thought of my pain as being "nerve pain" and the swelling from circulation issues. I have a positive D-Dimer with elevated lab results that requires me to use fibrin busting supplementsi such as Bolouke. When I do not use it I have much more pain especially in my legs & seems more vein damage occurs. At one point I even had tiny red (blood?) spots in my fingers and palms that stung like crazy & my hands hurt to use them for several weeks.
All these areas affected are still a bit tender & painful if too much pressure is applied with use. I cannot kneel, I cannot open jars, I cannot reach behind my back, etc.
I explained all this in detail so maybe something will I share will help some way. Are you having any blood issues with your symptoms? The bacteria really like to mess up both our nerves & circulation it seems to me. This would not show up on the tests you mentioned (did not for me either) but may cause the symptoms you described. I know how horrid it is to live under this condition and hope you will find relief soon. I wish I knew more about it too. Hope someone with more knowledge will come along to help. Slainte! MM
2002:CFSi. (2008-09:CPNi - CAPi/5 pulses) 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic.
Since I have psoriasis with nail involvement, I've been told I also have psoriatic arthritis. It seems to fit and I'm relieved by reducing inflammationi which tends to trigger the symptoms of psoriatic lesions as well as the underlying PA.
On the NPF website, they explain how psoriatic arthritis is more of a diagnosis of exclusion. In other words, if you don't have all of the other types of arthritic related markers, then you most likely have PA. (especially if you have psoriasis with nail involvement)
I think being on CAPi will cause flare up of PA (like I believe I'm having) with a waning away as the infection causing the inflammation is destroyed.
Traumeel (topical and drops) and ibuprofen along with the anti-inflammatory supplementsi of CAP all help some for me.
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons