Cpnhelp.org

kk2- I'm really glad to hear from you, although saddened by how difficult this has been for you and about the worsening of your problems. I'm hoping that you'll be able to get the spasms under control and find a way to get at this thing. So frustrating!

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

kitkat, OMG, sorry to hear of your hospitalization and your episode. You are on our hearts here at Cpnhelp and we shall collectively send you get well thoughts. Big hug, Tody

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month

Kathy,

Positive thoughts coming your way. So sorry to hear!

We, who are on CAPi, are not supposed to experience any relapses with enhancing lesions. Could Sarah have been right? That being off of ABXi fot 2-3 months was too long?

I googled Zanaflex and sulfites. Even went to the FDA's website, but couldn't find any answers as to whether or not it contains any.

Hope that you will be strong enough to go home, soon!

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

 

 

Kathy, I had been missing your input here. Holding great hope that this respite and round of steroids clears the way for incrimental and steady improvement.  Thank you for all the help that you have been to me.  Your contributions here are much appreciated.  Please keep posting your progress and challenges.  You have true grit girl!    Louise 

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Kathy, I've tried to take Zanaflex several times over the past year. I can't take it because it makes me so weak I keep falling, which is a problem for me because I can't pick myself up. I've even tried it at 2mg, time released dosage. I tried baclofen years ago with the same result. I have terrible spasticity in my legs, with them often tightening up so bad that they extend straight out and refuse to relax for several minutes. I think the doctor is at her wits end trying to decide how to deal with this problem. Linda

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If there is no wind..............row New Hampshire USA on CAPi since 2-4-2006 for MSi Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days 2x a month, 3g calcium pyruvate 5 days, 50000 units vit D

Kathy, I didn't find anything on Zanaflex and sulfites but I do remember not being able to tolerate it as well. I am with Linda on baclofen as well. I think the problem with them as they relax entire CNSi - making you feel exhausted. My spastic muscles are better - I still have tightness from time to time but the spasms can be broken. I am giving credit to 400 mgs of doxyi - but I don't know. If he ends up taking me off doxy maybe I will tighten up again. I'll keep you posted.I wish you out of that hospital as soon as possible. GENERIC NAME: TIZANIDINE - ORAL (tize-AN-ih-deen) BRAND NAME(S): Zanaflex Medication Uses | How To Use | Side Effects | Precautions | Drug Interactions | Overdose | Notes | Missed Dose | Storage USES: This medication is used to treat muscle spasms. HOW TO USE: Take as directed. Your dosage will probably need to be adjusted by your doctor initially to achieve satisfactory results. Follow directions exactly. Food can change the way your body absorbs and uses this medication. Be sure to discuss this with your doctor to determine the best way to take your dose, especially when changes to your dose are being considered or if you are being prescribed a different dose form of tizanidine (e.g., tablet or capsule). If you have been taking this medicine for a long period of time, do not suddenly stop taking this medication without consulting your doctor. Some conditions may become worse when the drug is suddenly stopped. Your dose may need to be gradually decreased to avoid side effects. SIDE EFFECTS: Nausea, drowsiness, dizziness, constipation, unusual weakness or dry mouth might occur. If these continue or are bothersome, notify your doctor. To minimize dizziness, stand up slowly when arising from a sitting or lying position. Notify your doctor if you develop: yellowing skin or eyes, stomach pain, vomiting, hallucinations. Very unlikely but report: vision or hearing changes, urinary frequency or burning, slow or irregular heartbeat, black stool. A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist. PRECAUTIONS: Before taking this drug, tell your doctor if you have: any allergies, low blood pressure, liver or heart diseasei, kidney disease, eye disease. Limit the use of alcohol as alcohol may intensify the dizziness and drowsiness effects of this drug. Use caution when driving or operating machinery or when alertness is required. This medication should be used only when clearly needed during pregnancy. Discuss the risks and benefits with your doctor. It is not known whether this drug is excreted into human milk. Consult your doctor before breast-feeding. Caution is advised when this drug is used in the elderly.

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

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Kathy, HI. Did you get the pump put in? How are you fairing? Hope things are well. kc

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dx msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

Day 14 in hospital.

 

Have been taking baclofen and zanaflex.  Legs still too tight/weak.  Blood press. got too low over the weekend, so doc is gradually reducing zanaflex dose back down again.  It has never helped, so am glad to move on to plan B which is to try a trial infusion of intrathecali baclofen.  Am scheduled for Weds am.  Will need to lie flat for 8 hrs afterwards.  Doc says I am 'excellent candidate' for baclofen pump.  If the trial works well, getting the pump implanted will be the next logical step.  Will need to be transferred to a different hosp. for the day surgery, then must return here to rehab hosp. for a few more days for some more PT/OT before going home.

  If things go that far and I am not thrilled with the results, they say the pump is easily removed.  Everyone I know who has had the pump implanted has been dissatisfied and ultimately had it removed.  Not too keen on the whole idea myself.  However, the current level of spasticity is keeping me from ambulating much.  Can still only walk about 180 ft with walker.

Glad the steroid taper is done.  My first time with iv methyl. and it was a trip I never want to take again...ugh.

 

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

KK2, so sorry to hear about your flare.   Ella had one a few weeks ago and is still struggling with some aspects of it now.   She was given three day of high dose steroids which do bring about a quick turn around.   She prefers taking them in tablet form though, even though they are not pleasant even in that form.

I hope that you regain your mobility soon, gentle exercise will help when you feel up to it.

You are in my thoughts.

 

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Measured value	Result	Time	Optimal Range	Therapeutic Range	Observed Range
Osp E IgM (U/ml)	0.7	12:00 AM	Normal: <1.7, Equivocal: 1.7-1.9, Abnormal: >1.9	Not established	Normal: <1.7, Equivocal: 1.7-1.9, Abnormal: >1.9
Borrelia burgdorferi IgM (U/ml)	0.7	12:00 AM	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3	Not established	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3
C2 + C6 IgGi (U/ml)	2.1	12:00 AM	Normal: <2.1, Equivocal: 2.1-2.4, Abnormal: >2.4	Not established	Normal: <2.1, Equivocal: 2.1-2.4, Abnormal: >2.4
Variable Major Protein IgM (U/ml)	0.7	12:00 AM	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3	Not established	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3
Osp E IgG (U/ml)	2.1	12:00 AM	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3	Not established	Normal: <2, Equivocal: 2-2.3, Abnormal: >2.3
LFA Antigen IgM (U/ml)	0.7	12:00 AM	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1	Not established	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1
Borrelia burgdorferi IgG (U/ml)	2.0	12:00 AM	Normal: <2.5, Equivocal: 2.5-2.8, Abnormal: >2.8	Not established	Normal: <2.5, Equivocal: 2.5-2.8, Abnormal: >2.8
Osp A + Osp C IgM (U/ml)	0.8	12:00 AM	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1	Not established	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1
Variable Major Protein IgG (U/ml)	2.2	12:00 AM	Normal: <2.5, Equivocal: 2.5-2.8, Abnormal: >2.8	Not established	Normal: <2.5, Equivocal: 2.5-2.8, Abnormal: >2.8
LFA Antigen IgG (U/ml)	2.3	12:00 AM	Normal: <2.2, Equivocal: 2.2-2.5, Abnormal: >2.5	Not established	Normal: <2.2, Equivocal: 2.2-2.5, Abnormal: >2.5
C2 + C6 IgM (U/ml)	0.7	12:00 AM	Normal: <1.7, Equivocal: 1.7-1.9, Abnormal: >1.9	Not established	Normal: <1.7, Equivocal: 1.7-1.9, Abnormal: >1.9
Osp A + Osp C IgG (U/ml)	2.2	12:00 AM	Normal: <2.3, Equivocal: 2.3-2.6, Abnormal: >2.6	Not established	Normal: <2.3, Equivocal: 2.3-2.6, Abnormal: >2.6
Borrelia afzelii IgG (U/ml)	2.3	12:00 AM	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8	Not established	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8
Borrelia Garinii IgM (U/ml)	0.7	12:00 AM	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8	Not established	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8
Borrelia Garinii IgG (U/ml)	2.7	12:00 AM	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8	Not established	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8
Borrelia afzelii IgM (U/ml)	0.7	12:00 AM	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2	Not established	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2
Borrelia b. sensu stricto IgM (U/ml)	0.7	12:00 AM	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1	Not established	Normal: <1.8, Equivocal: 1.8-2.1, Abnormal: >2.1
Borrelia b. sensu stricto IgG (U/ml)	2.4	12:00 AM	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8	Not established	Normal: <1.6, Equivocal: 1.6-1.8, Abnormal: >1.8
Babesia IgM (U/ml)	0.7	12:00 AM	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2	Not established	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2
Bartonella IgG (U/ml)	2.5	12:00 AM	Normal: <2.8, Equivocal: 2.8-3.2, Abnormal: >3.2	Not established	Normal: <2.8, Equivocal: 2.8-3.2, Abnormal: >3.2
Babesia IgG (U/ml)	2.4	12:00 AM	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2	Not established	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2
Ehrlichia IgM (U/ml)	0.8	12:00 AM	Normal: <1.8, Equivocal: 1.8-2, Abnormal: >2	Not established	Normal: <1.8, Equivocal: 1.8-2, Abnormal: >2
Ehrlichia IgG (U/ml)	2.1	12:00 AM	Normal: <1.2, Equivocal: 1.2-1.4, Abnormal: >1.4	Not established	Normal: <1.2, Equivocal: 1.2-1.4, Abnormal: >1.4
Bartonella IgM (U/ml)	0.9	12:00 AM	Normal: <1.8, Equivocal: 1.8-2, Abnormal: >2	Not established	Normal: <1.8, Equivocal: 1.8-2, Abnormal: >2
Unrelated Spirochete IgM (U/ml)	0.7	12:00 AM	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2	Not established	Normal: <1.9, Equivocal: 1.9-2.2, Abnormal: >2.2
Unrelated Spirochete IgG (U/ml)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

My recent Lyme/co-infectionsi test results: see below....

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.