antibiotics and joint üproblems

hi

-- i am chris--i have great pain in my hands so typing hurts and i will keep this short-- how are u all doing now and how much improved are u ? i have been on 3 years of dr jadins pulsed protocol(doxyi<i<,roxyi<i<,minoi<i<,metronidazolei<i<,dalacin c,tetracycline)and 6 months of the Marshall protocoll..now i am on capi<i< since okt08... i am on doxy 150mg,z 125 mg 2 to 3 times week,3day pulses of metro and nac2400mg day)still working my way up to full doses due to strong pain---

 

here is the thing:#

i never had pain in all the years of my illness and developed it(pain) due to the antibiotic therapie(it does not go away on antibiotic breaks)being a musician this has been worse than the original illness..#i cannot play anymore at all..my hands neck and shoulders are totally messed up-- this is sad as many other symptoms have improved greatly.. please:

are there any people who got 100 or at least 95 percent cured...

how many are they?do u know them..where are their posts? --i can only find astrodianas post in patient stories

my questions is:

did any of u develop pain on treatment(in specific places) that didn´t resolve on breaks but has or has not  resolved since ?

do u think the antibioticsi may directly cause tendon,ligament problems due to an effect other than just die off of pathogens and inflammationi--i think the antibiotics have weakened my tissue considerably...i hope it is reversable

 

 

 

all the best-- chris

Yes, some antibiotics can cause tendon damage, specifically. Those we use on the Stratton/Wheldon protocolsi are not known for this.

Many of us here DID have 'new' pains and aches while on the protocol. And some of us have had very old injuries rise up like ghosts, to haunt us. These aches and pains are the result of infected blood cells rushing to the site of injuries, then populating that injury site with cpni bacteria, which colonizes the area. There can be a heavy concentration of infection at these sites.

As the abxi attack the bacteria at these locations, inflammationi will occur (think of the angry red skin surrounding a fresh cut or bruise). Eventually, it should resolve itself. Sometimes this will occur, seem to heal and resolve, REoccur, seem to heal and resolve, etc., like a rollercoaster. Over time, the ride becomes less up and down and it levels out.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I might be a bit odd here, (no comment Jim!) but I have never had any pain before the treatment or during it apart from the two weeks during and after my third flagyli pulse, which I told you about.  It was rather frightening at the time because it reduced my new found mobility of my right arm quite considerably and for months I was supporting my right arm with my left when painting, or even attempting to paint with my left arm without much success apart from roughing in undercoats..................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Chris- I'm posting my reply to your PM, since it applies to the questions you are asking here. Re-reading your signature, it also feels important for people to understand why the protocolsi you have been following might have resulted in the increase in problems you are having now.

Chris- When I started I was almost completely disabled, with extremely high bacterial loads and very severe porphyriai<i<, so I had a long way to go and had to do many things gradually as every time I pushed to hard I got very sick. I'm presently at 85% and it has been slower going. I suspect I'll need to take the rifampin plunge to get the remaining 15% improvement and I'm a bit of a coward about this.

I had the kind of overall muscular and joint inflammatory pain you are taling about quite severely. In fact the first antibioticsi<i< I took (out of ignorance a full 3 week course of tetracycline) put me into agonizing pain all over my body-- every muscle, joint, soft tissue. I have two guesses about the reason you are getting more pain. One is that as you have treated with both the pulsed Jadin and followed by the inadequate MP, the Cpni<i< has coninued to disseminate to soft tissues via vascular medium. Dr. Stratton has referred to Cpn as a "small vessel disease" since the EB'si<i< are very tiny, get carried into capillaries where they get stuck and infect the local endothelial tissues. There are soft tissue ares (muscles) where I still get some flare up of pain even now doing pulses.

Another possibility is that, because of the alternating pattern of the Jadin protocol, which theoretically would push Cpn from one phase to another without really killing it in all phases, you've actually been building up cryptic Cpn in these soft tissues. Cryptic Cpn is probablly the most inflammatory of the forms since it generates an endotoxini<i< HSP60 which is one of the more inflammatory substances around. The MP then following this allows a gradual increase in bacterial load since subclinical doses are use and the immunei<i< system is suppressed by avoiding Vitamin Di<i<.

Taking antibiotic breaks simply encourages this whole process and probably has helped develop resistant strains of bacteria. Low dosing and stop/start is exactly how they generate resistance strains in the laboratory.

The 100% improvers were recorded in the original Vanderbilt research and are reported in the Handbook. This site did not exist then, and the strategy used here (pulsed flagyli) is a more gradual approach so takes longer. The problem with the original approach was that it was very severe and had a high dropout rate.

What will make the difference is staying on the CAP consistently over a long period of time. This is not a short treatment. Many of the tissues infected, bone marrow for example, are very hard to get at and take a long time. This also means there is a constant reservoir for infection even if you are killing it in other places. Using INHi<i< with proper liver monitoring helped me alot in this regard, and helped restore my immune system faster. Post about how people deal with inflammationi<i< and get some advice here. Ibuprophen has always worked for me.

 

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Chris,

I'd like to add to what others have already said in that I've had new pains such as MacKintosh talks about.  I'm having trouble with the tendons around my knee which I've never had before and increase in nerve pain in my arms and hands.  I believe this is part of the healing process though and will improve, in time.  

I do believe Mac and Jim's replies to be quite accurate (for me too) and will just say that when I did my 2nd Tindamax pulse I thought I couldn't go on with CAPi because I see how much less inflammationi was invoked using high doses of Benicar on the MP.  

But now I believe besides Benicar maybe being somewhat able to reduce inflammation, I doubt I did much to kill off the cryptic w/o a bactericidal abxi (Tindamax, Flagyli) being used and so this explained to me why that 2 days of Tindamax caused so much die off and inflammation.  

I've learned that the supplementsi are all very crucial (for me) in order for me to get thru this treatment.  Dr Teitelbaum has also written (links in my Valcyte blog<) about how using his SHINE protocol which incorporates herbals, supplementsi and hormones with pharmaceuticals prevents people from having severe reactions when treating infectionsi.  He refers mainly to treating viruses but I think it would be safe to apply his comments to treating other chronic infections too since he does also use antibiotics.  

So with that said, I will say that if it wasn't for the long list of supplements I'm using with CAP and had first started for 2+ months without any antibiotics, (which made me feel better first before starting CAP) I doubt I would be able to tolerate CAP.  

There have been a few times the reactions have still been unbearable due to pain, but it improves as I apply the priciples of CAP by using the supplements which are suggested to treat secondary porphyriai, inflammation, etc. 

I recently asked katman (Rica) if she was still using the long list of supplements< since she is so much further along than I am and she said yes, so I think it will be some time, maybe a few yrs, before I can go to the short list of supplements< while I work on reducing my infection and try to regain/recover my health.  

BTW, I first found this website when I was searching for nutritional support (liver support led me to NACi, hence this site) because I was so sick after my 3+ yrs without nutritional support after the MP.  (you prob recall that, remember?)

Right now, I'm somewhat improved from before the start of the MP, but still not as well as I was when I believe I shut down my immunei function and had a "spell" of feeling better although my labs worsened, I lost bone density and my Vit D at that time was 8.  

I'm back on track now, somewhat less patient than I was but I have to look at the start of CAP (May, 08) as the start of treatment for me and forget about the years I spent on the other protocolsi.  I began the supplements for CAP in March, 08 so it's been nearly a year now.  Once you turn things around, you will begin to feel better first, I think, then you will slowly improve, but not in a straight line.  

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

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