Tremors?

Anyone else developed tremors while on CAP's?  About 2 weeks into my protocal I started having neurological symptoms.  It started with slight weakness and shakiness in both knees.  It has now progressed to an "internal tremor" and a visible resting tremor of my left hand.  This was so alarming to me that I have temporarily stopped the abx to see if these symptoms improve.  I should note that I had to switch from doxycycline and zithromax to clarithromycin and amoxicillin, because of an ulcer I developed, tested positive for H. Pylori.  Intitial symptoms started aprox 5 days into the clarithromycin/amoxicillin combo.  I am hoping that these symptoms are from atopsis of nerve cells that were infected with cpn.  I would love to hear from anyone with similar experiences on cap's.  thanks!

Hang in there Eric, as I don't have MS I can't share any relevant experiences with you, but I'm sure the MSers will pitch in when they wake up.   But it is a well known fact that certain aspects of the disease we are suffering from get worse before they get better.  

Of course it is because of the antibiotics, but the long term outcome would be worse without them than with them.   As I understand it the antibiotics cause reactions in your body by killing the bugs that make you ill (apoptosis), in the process your body feels worse because of surrounding damage and your system having to cope with porcessing toxic material.  Some symptoms have appeared during the course of my treatment that had not been present before, mainly painful joints in hands and feet, and they have subsided in a couple of weeks, too soon to tell if they have gone for good though.

Others will have to make a comment about the switch in antibiotics. 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Eric, you aren't at the moment on CAPs, you are taking medication for h pylori for your stomach ulcer and clarithromycin does have tremor as a possible side effect:  http://www.rxlist.com/cgi/generic/clarith_ad.htm It is also the gold standard antibiotic when used with amoxicillin for stomach ulcers, so you had better check with your doctor, because the last thing you want to do is stop the antibiotics.  You also want to avoid having to have surgery for the ulcer........Sarah

 

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Eric, I'm about a month into CAP treatment for FMS and related conditions. Started with amoxicllian and on the 3rd day on that I developed an intense herxheimer/cytoken reaction with symptoms very similar to flu. This resolved in about 36 hours. I'm now two weeks into the azithromycin part. Take 250mg of zith very Monday, Wednesday, and Friday night, and after about a week of that, I'm waking up with multiple symptoms of porphyria. This includes muscles tremor, muscle fasiculations, terrible  brain fog, increased tinnitis, fatigue and tightness of chest when breathing.

 I recognize these symptoms as being due to increased porphyrins, beause I had an extremely bad attack of porphyria that lasted 8 weeks earlier this summer before I started the antibiotics, and had all of these symptoms (as well as many others) very intensely.

I've recently had both a urine and stool 24 hour porphyrin test, and both showed elevated porphyrins.

 From what I have read here, though the macrolide and tetracycline antibiotics are bacteristatic rather than bactericidal, their bacteristatic activity against the intracellular RB Cpn form can cause them to be unable to manufacture the factors that allow them to prevent their human host cells from undergoing normal cell death (apoptosis). As a consequence, delayed apoptosis occurs, spilling both the RBs and accumulated intracellular propyrins into the blood stream.

The propyrins result in Cpn infection because intracellular Cpn infection interferes with the intracellular synthesis of heme, and the consequence of incomplete heme synthesis is the accumulation of intermediate heme prescursors which, while normally existing only transiently, are highly neurotoxic when present for longer periods of time. Neurotoxicity can occur in both the somatic and autonomic systems, and can occur in both the CNS and peripheral parts, so the induced symptoms are incredibly varied.

Your neuro symptoms probably mean the CAP is working.

Also, note that second only to red blood cell formation, the liver produces the most heme, and is therefore the most likely source of large amounts of porphyrins due to apoptosis of infected cells. Once released into the bloodstream, porphyrins produce neurotoxic effects throughout the body, with incredibly varied symptoms in very strange places. Based on my own personal experice, I do not believe that all localized symptoms are indicative of Cpn dieoff at the location of the symptom, but in fact are frequently a consequence of systemic porphyrin neurotoxicity. I think a  study of porphyria symptoms helps to shed light on the nature of the symptoms that arise during Cpn dieoff.

 The corollary to all of this is that anti-porphyria measures are critical and should be practised with great diligence.

In addition to the standard anti-porphyria measures mentioned here, I've found propranolol to be quite helpful, particularly with the neuro symptoms. I take 20mg on the nights I take the zith.

Don't give up on the CAP just because of the neuro symptoms, but consider backing off the intensity of treatment to match your tolerance of dieoff symptoms. Personally, I'm willing to tolerate quite a bit of dieoff symptoms because I know that means I'm getting rid of the bugs that have been ruining my life for so long. Also, understanding the source of my symptoms has elimated the fear factor, and that has been a gigantic help. Rather than being freaked out about why weird things are occuring, and elevating my anxiety level (which already gets elevated by the porphyrins themselves), I've kind of gotten where I just think, oh, more porphyria symptoms from dieoff, I'm getting well.

 

basil. 

 

 

If cats are outlawed, only outlaws will have cats.

Basil,  Bravo!  Excellent and concise information, right mental attitude. 

Eric,  Please take to heart Basil's advice.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV, elevated heavy metals; strong indications of Cpn, gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

I am a newbie here with not much experience so bear that in mind as you read. The neuro symptoms you are having sound like myoclonus (similar to restless leg syndrome). I have had the tremors for three years. Riquip a Parkinsen's med and accupunture have helped. As I have begun my CAP my tremors have returned. I really flipped my Dr. out with them last week. My arms shake my whole body shakes. The internal tremors are the most challenging to me. I have been told that they are just like the flulike symptoms Not harmful and show the CAP is working. Hope you find the help you need. Sally
Sally On CAP for CFS since Nov 06 , see Dr. Powell, Valtrex 2x daily, zithro MWF, First Flagyl pulse Fr, Dec 2nd

Yeah, I have tremors. I don't think I've ever had one in a totally relaxed hand, but I used to have mild ones sometimes when my hands were held up in the air, in 2004, when I was getting sick.

I'm pretty sure I had nystagmus back in 2004, too, though I don't know the "official" criteria for that... anyway I subjectively was unable to fix my visual focus on a single point.

I also had an apparant complex partial seizure (mild) around that time... first feeling a bit weird for an hour or so, then suddenly becoming totally disoriented while talking to my girlfriend, and having my legs jerk around a bit for ~15 minutes.

And, muscle fasiculations about once every 10 seconds, all the time, before treatment. Over the years, these went from being very fine to somewhat larger, but they have declined >99% in frequency over the same time period. Interestingly, they would immediately resolve for about a month each time I took IV magnesium/nutrients back in 2005. There are conflicting reports in the lit on whether a magnesium abnormality is or is not biochemically demonstrable in CFS. These fasics seem to be regularly but uncommonly reported by both MS and CFS diagnosees on the internet.

I still have hand tremors/clonuses, sometimes of a large amplitude - but rarely, and now only during use of the hand muscles. They will just come on for a few seconds when the hand is in a certain configuration. I haven't heard that much about tremors or weakness in CFS.

I don't know any neurology (or, for that matter, medicine), so I can't comment on whether your new symptoms should be considered alarming or should cause you to terminate the abx. Generally speaking, however, it's important to follow the dosing instructions very closely for the anti- H pylori regime, because there is a significant risk of treatment failure, though it is usually eradicated successfully. You really want to get rid of those things. Did you stop in the middle of the helicobacter regime, or complete it?

 

>> [from upthread] From what I have read here, though the macrolide and tetracycline antibiotics are bacteristatic rather than bactericidal, their bacteristatic activity against the intracellulari RB Cpn form can cause them to be unable to manufacture the factors that allow them to prevent their human host cells from undergoing normal cell deathi (apoptosisi). As a consequence, delayed apoptosis occurs, spilling both the RBs and accumulated intracellular propyrins into the blood stream.

This scenario is not unlikely, but it's really just a hypothesis.

 

 

i have tremors too, I don't have MS but ME/CFS/lyme with many MS-like symptoms.  The tremors were not caused by the CAP, they were already a part of the steadily worsening illness before treatment started.   The sudden weakness and shakiness in knees always  surprises me because it never happens as a result of overuse or tiredness, it just occurs out of the blue but you've just made me realise that it doesn't happen so much now.

The one I can REALLY identify with is the 'internal tremor'  (which incidentally is often discussed on  lyme boards)  this is one of my most constant and horrible symptoms, though it waxes and wanes in intensity.    I can feel it throughout my spine and head  like a very strong tightening of all the muscles down each side, so tight that everything trembles with the force.  It makes me feel restless and  'wired' as at times it's impossible to lie still to sleep.  I call it 'the shakiness' but even at its worst my family assures me that it's not visible even though the effort of trying to resist it can make my head turn to the side.   It's visible in my hands though, when tensed or relaxed but isn't bad enough to affect the function at all.

Trying to describe these types of debilitating and so worrying symptoms to a doctor when test results keep coming back as normal  gets you that glazed 'it's all in your head again' look  if you've got the ME diagnosis........ so eventually you just stop reporting these things.  That's probably why many doctors  don't realise how weird this particular condition can be for some of us.

Elinor from England, UK..... on Wheldon protocol for ME/lyme borreliosis , positive for borrelia and Cpn.  Started  Aug 05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
rb

 I had terrible trembling after a few weeks on the CAP.  It's not a symptom that I really had before, and it has since passed.  Man... I typed that it sure sounds like I was casual about it.  It was definitely freaky, but I guess freaky has become the norm for me...

 I hope it isn't a problem for you soon!

-rb

On CAP for CFS(maybe?)|chronic infections|generally falling apart| starting 9/2006
Currently: NAC 900mgx2; doxy 100mgx2; azith 250mg MWF; metronidazole 500mgx3 often

 

-rb


On CAP for CFS(maybe?)|chronic infections|generally falling apart| starting 9/2006
Currently: NAC 900mgx2; doxy 100mgx2; azith 250mg MWF; metronidazole 500mgx3 often

 

I now remember I also had weakness, actual muscular weakness as opposed to a lack of energy to use the muscle. This was only really during my very worst few days. I was filling in a Scantron bubble sheet for a doctor, and I couldn't pencil the bubbles in with one hand - not nearly. I had to do it clumsily using both hands on the pencil. I suppose there's nothing to objectively prove that that wasn't a coordination problem, but what it felt like (unmistakably) was weakness. Not something I've heard of on the CFS forums very much though.

The Scantron sheet was a mental health questionaire, of course, and no one cared that I had to use two hands to write it. Just one more of his madman eccentricities! Yes, here it is in the DSM appendix on the most common ultra-rare manifestations of major depression - right here between kidney failure and spontaneous combustion.

LOL, Eric. Dianna can judge my overall well-being by how trembly I am when I hug her. I tell her that's my new "Vibro-hug" feature, and that she'd have to pay extra to get that feature added on after-market.

Actually, I hate it. I feel so helpless and weak. Can't even hug my wife without telegraphing my illness. Oh, well, better days are coming! 

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Ron,  From the times you've mentioned Dianna, what she said, what she did, I would venture to guess that she embraces every part of you whether it vibrates unexpectedly or not.  Though Steve and I were both unaware of his MS when we married 8-1/2 years ago, I did have knowledge of some physiological "foibles."  The rest of the package diminished those "foibles" into things of no importance in our relationship.  Since then, they have overtaken his life, but they are still meaningless to our relationship.  He's still the finest man I've ever known and the only one I want. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV; elevated heavy metals; strong indications of Cpn, gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.