ruthless1, Canada

Multiple Symptoms, here is my diatribe!!  I was new to the site April 06 & I have Fibromyalgia-FMSi, Chronic Fatigue Immunei Deficiency-CFIDSi/Myalgic Encephalomyelitis">i- ME, Chronic Lyme Diseasewith the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPNi, Babesia & recently hereditary genetic Hemochromatosis. 

For the past 45 years I have been bounced around with test after test for symptoms after symptoms, A typical, A Type personality, until finally; 2006, Jan. some things fit together, the body operates as one unit, the separate medical specialists have to put all of their findings together for some kind of conclusion - a label serves as a place to start healing but not without a concrete cause.  

I have worked very hard to get medical people, family & friends around me that know about my illnesses and their effects.  Still to my astonishment there are not very many doctors who  recognize these illnesses much less diagnose them!  I am from Canada and and we have socialized health that operates more on a get you in & out as quickly as possible for a decent pay cheque.  As you probably know by now, it takes more than 5 minutes to see a person with our illnesses.  There are some doctors who refuse to accept new patients with these illnesses & others who think they know everything & think it is "all your head".  

This has forced me to take my health into my control and I have found medical people who can take care of me by working with me.  Check this site, I have found my turning point doctor here www.fibroandfatigue.com<  In April 2006, I was suffering from exhaustion, migraines, entire body pain --my body just cratered; I had to stop working, go on disability and since then I have been clawing my way back to better health.   

So, how did I get to where I am now ill & still looking for answers, here goes:

childhood - only had a very minor case of Chicken Pox

Age 5- Herpes I major oral canker sore outbreak

Age 7- broken collar bone & concussion from falling 14’ to asphalt (with force- long story)

Age 8-10- major pain in my legs called “growing pains”.  Abdomen pain that would temporarily subside with rest;  Emergency appendectomy in the nick of time. (remember being very upset when I was coming out of anesthesia)

Age 11- broken arm while skating

Teen years- various sporting soft tissue injuries plus fractured bone in hand, dislocated shoulder -reinjured more times than I can count in sports as well as concussions but generally well.

Age 18- Measles, I think the German kind-sore eyes.

Age 19- “Spastic colon” or IBSi as we refer to it now

Age 20- persistent bronchial cough that wouldn't stop (I took cough suppressant to control) resulted in pneumonia. First round of abxi<

Age 21- persistent tonsil (very large like golf balls) infections; stayed on penicillin for about 6 months until they had to go ahead & do the surgery even though it was not desirable to be on penicillin at that time

Age 22- dental surgery to remove 4 wisdom teeth, 1 impacted & resulted in dry socket (came out of anesthesia & was held by nurse as I wanted to leave the place before I was ready) another round of abxi<

Age 23- Mononucleosis (Epstein Barr Virus) with Hepatitis A, treatment with abx, rest, off work month

Age 24-29 (1981-87)- 4 car accidents resulting in neck soft tissue damage & TMJD (none of which were my fault. I spent years in physio therapy. Developed allergies, sinus ? draining - sinusitis?, asthmai like cough that doesn't go away entirely. Noticable circulation issue with very cold extremities & butt.  Had cellulite on thighs even though I was very fit (when I was 17 I only weighed 105 lbs at 5.6" & still had cellulite)

Age 29 (1986)- gave birth to my daughter, 36 hour difficult labour, started natural ended up with Demerol, Morphine & epidural. Noticed my BP was low for pregnancy 110/60. Determined I have a high tolerance to pain medications. Infection of epesiotomy. Suffered post partum depression, unmedicated & was told it was very rare, we know better in 2010.

Age 30- car accident (not my fault) neck & back soft tissue injury; off work for one year, more physiotherapy, rehab swimming, chiropractor & massage therapy- (both treatments continued regularly until 2007. since I have been off work my low back problems are less though I need regular massages).

Noticed about this time that I had the lights out fainting when I stood up quickly & at minimum I have dizziness.  At 2010 if I move my head quickly I see stars & get dizzy.

In my 30's & on into my 40's countless numbers of bladder infections or symptoms of them, antibiotics In one yr. I had about 10! Lots of abx taken

Age 41- marriage breakdown, psychologist says depressed & suspects FMS due to chronic pain from so much soft tissue damage, prescribed medication; tried a few lots of side effects ended up on Effexor.  Started noticing clumsy & balance issues. Diagnosis of heart Arrythmia.

Age 43- 2 doctors diagnose separately FMS, no treatment. I just continued massage therapy & chiro monthly for maintenance.

Age 44- motor cycle accident (my fault) suffered broken pelvis 4 places, concussion, temporary loss of movement in right leg which 4 week later MRI showed L4 & L5 squished pinching sciatic nerve & inherited narrowing of spine in area. Permanent nerve damage right side of leg knee down & top part of foot.  After bones healed, physio started & then one week later the horrible low back pain & in every nerve of my body- sympathetic nervous system meltdown; taken to hospital for pain management that did little due to my tolerance to pain meds.

about this time I developed insomnia which became chronic & had to be medicated about 2004

Age 46- 2 sympathetic nervous system meltdowns within a month of each other triggered by pinched sciatic nerve; received multiple narcotics to put me out of misery flat on my back in a drug induced stupor for about 8 days each time.

Age 47- see a doc about managing my pain, excruciating low back, but due to fatigue, flu like symptoms CFIDSi symptoms, energy & MVA crashes, identified immune problems, run down, catching flus annually & was extremely ill with them, had to have someone with me as I was unable to care for myself (from 30's on) so not healthy enough to give me acupuncture or intramuscular injections.

Age 48- low back pain very bad, lots of crashes, flu like, go to physio for acupuncture but didn’t finish treatments, didn’t help. Neuroi sx I couldn’t pick up a glass, numbness in limbs, tingling in hands.

Age 49 (2006)- diagnosed with CFIDS/ME, RLS,including CPN, Lyme Disease, immune deficiency, Petuitary/Thyroid dysfunction, hypothyroid, Hypothalmus issue etc. etc.  Lymes treated with appropriate regime of antibiotics. Lost feeling in my left toes & have no Achilles reflex. I went to see a talk by Dr. Kenny De Meirlier a world renowned specialist in CFIDS. He is the reason I have taken serious steps to make myself better.  We can die from complications due to this illness. 

And now at Jan 2007, age 50- severe abdominal pains, contractions that at the worst lasted for 8 hours, had loss of feeling in arms pins & needles in thighs & down into left leg; pain would subside but have tenderness in my liver, kidney areas.  Suspected bacteria or parasite infection so doc put me on abx Nystatin 500,000U 3 – 3X day, Minocycline 100 mg 1 – 2X day on Monday, Wednesday & Friday, Metronidazolei 250 mg 1 – 2X day Monday, Wednesday & Friday (update May 7-07 cut to 125 mg day, by the 12th, less pain in lower rib cage - liver area. Waiting for my MD to read some Handbook stuff & decide what doseages he will prescribe so I may actually begin the protocol), Fluconozole 100 mg  1X wk.

Largely I have had little energy & was crashed most of the time to late 2007. Gradually improved after starting CPn protocol in some areas. 

While there didn’t seem to be a cure for what ails me as no one cause, I have been managing with supplementsi, digestive enzymes, more vegetables, hypoglycemic diet, natural & organics whenever possible, identify food allergies 2009, exercise in moderation so as not to crash, things were getting better until the abdominal contractions. 

I have also naturally cleansed, full body, Candida & heavy metals. I have been able to substitute antidepressant Effexor with natural Inositol, SAMe worked ok too - no side effects, substitute antiviral Famvir with Lysine, acidophilus (good bacteria)(when I get the tingles now my naturopath makes a preparation that stops them) -again, no side effects.  I still have to take sleep meds, combinations of tarazadone, triazolam, tryptophan, natural sleep meds, melatonin">i, benedryl & tempazepam for sleep, as well as GABA!!  I have to juggle these around as my sleep is still not where it needs to be though better.  I had some improvement after quite a few acupuncture treatments in 2009. 

If you can't say it, don't eat it and if you can’t put it in your eye, don’t put it in a wound.

  I do have a Neurologist appt. for May 8, 2007 due to my loss of feeling in my feet and lots of numbing, limbs going to sleep, pins and needles, those sorts of things. (update May 12-07, neuro doc says no MS & that sx & MS isn't caused by bacterial or viral infection)  These can also be cross over symptoms from CFIDS/ME but better to eliminate or recognize MS as that can cause serious permanent damage if undetected.

I had a sleep study done in Jan. 08 that determined my brain was waking as many as 22 times an hour.  My sleep hygiene is & was good, I told him about the abx & he said to let him know if my sleep improves.  I will have to do this sometime here in 2010 when I continue with acupuncture to see where that goes as I have blocked Chi, my top part is too hot & bottom too cold. 

I read with great interest my weekly Immune Support newsletter and found out about how serious CPN can be in 4-2007. I continue on the protocol & looking for other answers.  There is lots of new research noted here on the site for CFS/ME.  Thanks for the site. 

With Christ in faith 

Ruth 

Comments

I wonder if our Type A

I wonder if our Type A personalities are really that we are stuck in permanent flight or fight mode. Lord Jesus bless you, Ruth.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

wooo whoooo Rica... your

wooo whoooo Rica...

your head doesn't spin around on your neck like you are demonically possessed does it?? Tongue out

I am soooo going to be looking out for Day "8" because of my past history from pulse 1 & 2.

Good Luck

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Mine begins Tuesday night,

Mine begins Tuesday night, Ruth. I will think of you often.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 46 pulses NC USA

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.&am

sorry folks, just

sorry folks, just updated

pulse 3 starts tomorrow!

yeah Troll Queen

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Any early attempt at

Any early attempt at finding a solution to a very difficult problem is likely to be 'a hit and miss thing'. Here the situation is active infection within the brain of people with multiple sclerosis. MSi is at root a chronic encephalitis">i caused by a toxin-containing bacterium: the problem is to steer between the Scylla of inadequate treatment of the infection and the Charybdis of too-rapid endotoxini release in the CNSi. And this usually has to be done from a distance, through a highly motivated carer. Anyway, it worked with my wife, who had very aggressive MS and who was getting bad cognitive problems, paralysis and spasticity. Now her mind is crystal clear and she is back doing what she likes best - painting, and to some critical acclaim. Without this treatment she would be in the same situation as the woman described here<, now almost certainly long dead. Of course there's a long way to go; nothing's perfect straight off and doubtless with more experience we'll see many changes. Sagax semper discit — the wise man always learns.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. Now on intermittent treatment. Normotensive.]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Ruth,  I also don't

Ruth,  I also don't understand your comment about the Wheldon CAPi.  One of the reasons I chose it is because it is more concisely presented.  If the "go slow" advice bothers you, here's more advice---not going slow could make doing a CAP undoable and even hurt you.  Perhaps you have missed the point of the requisite gradual and long nature of a CAP:  killing off too many Cpni at one time is too toxic for your body to handle.  More importantly, when the Cpn die, the Cpn signal to the host cells to stay alive well past old age stops, and the decrepit old host cells also die.  Too many host cells dying at one time could result in organ failure or too much inflammation from the immune systems efforts to clean up the dead cells in response to apoptosisi.  Too much inflammation results in the type of "collateral damage" to surrounding tissues that could just create the need for more repair and  reversal work (hopefully) for your body to do.  It would be like bailing water with a holey bucket, and suffering needlessly to boot.  Rememeber, the bug-killing is only one part of your overall goal, which is recovery.  Going too fast could actually lengthen your recovery time.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Ruth, what do you mean when

Ruth, what do you mean when you say the Wheldon regime is a hit and miss thing?  It is just an adapted version of the Vanderbilt protocol, used by someone very adept, from seeing patients and talking to them, whether they are likely to be infected or not.  It has worked for the majority of people he has used it on........Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no MS episode since starting. EDSS was about 7, now 2.
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.

By hit & miss, I intend no

By hit & miss, I intend no disrespect or disbelief, I only mean there is the protocol and then there are patients, who are all different in their capacities for treatment (dosages) & the stages of illness they are in. 

I have been sick for a very long time & it would appear from what I have read the cpni has been wreaking havoc.  It has to go & I know it has to be done slowly.  Trust me, I am presently on antibiotics  for 3 wks for the extreme abdominal cramping I have had 2 wks straight Mar/Apr & I know how I feel - bad! "crashing for days on end"  Pain, tender liver & kidneys. I have another 6 weeks to go on this & I am putting my ducks in a row to get started on the cpn protocol.  

I have just found out I now have a cyst on my ovary as well.  My doc has booked me for another ultrasound in July as it might just go away?  I am days away from my Neurologist appt & tomorrow I see my GP for my sleep meds.  After my results are in I have to appease my Long Term Disability insurer & enter into a regimented exercise program.  Their "expert" who incidentally, doesn't believe that CFIDSi & Fibro are different & says we all just have Fibro, told the insurer that all I need is a 12 week exercise program & back to work!  I have been exercise oriented all my life, but I have the crashing problem & the rebound pain effect from exercise (I tend to overdue & not underdo)

I am also a walking talking Barometer & the weather where I live changes often & this affects my body which doesn't have much soft tissue left that hasn't received some damage.

 So, when I say, I planned to use my body up before I die, it is a figure of speech, for I have been living alot of life, doing thing, lots of things & finally I just hit a wall.  This happened long before I had planned & I didn't allot for the bacteria cpn effects.  so be it.

I hope this clears things up, thanks so much for your replies & concerns, they touch me deeply.  I know the energy it takes to even post an entry on here when you're not well.  Again, thanks.

My best wishes to everyone going through this tiny bit of hell.

With Christ in Faith

Ruth 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Although it might appear to

Although it might appear to be a hit and miss thing, the two protocolsi that are described in the handbook are similar in most respects.   There are some differences in the antibioticsi but they are of the same type and do the same job.   Some of the differences are due to availability in different parts of the world, and some of them are due to certain aspects of the reactions they induce.

Originally doctor Stratton who developped the protocol had his patients adding the antibiotics gradually one at a time but there was not intermittent use of Flagyli, however Doctor Wheldon adapted the protocol to allow the body to recover from the assault of flagyl, especially in the light of the effect that the flagyl might have for MS patients.

It is true that you might read of other people's schedules, but often these have been started by doctors and patients who were not aware of the protol that Drs Stratton and Wheldon recommend, so they might be treated with a different single antibiotic.

Here, we advocate the use of a combination of antibiotics, 2 bacteriostatic antibiotics (stop replication) and one bacteriocide (enters the infected cells and kills Cpni).   The bacteriocide (Flagyl) is pulsed until the time that some of us have felt that we have come to a standstill.  At which time it might be necessary to gradually build up the dose of  Flagyl so as to take it continuously.   This is unlikely to be necessary for someone with a light load of Cpn, but for some of us who have been ill for over 30 years this may be necessary.

If you try to speed this process up the result may well be very unpleasant which is why we recommend that you take your time.   The unpleasantness is often associated with the area of your body which is most badly affected.   So for instance you might suffer from a number of the many die off symptoms, but maybe not all.   A bit like 'pick and mix' although not as pleasant. Look here< and here< for more reasons to go slow.

I do hope you find a doctor who is willing to prescribe a CAP, as it is most important that all the phases of the life cycle of the insiduous little bacterium is addressed. 

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

I hope to be able to start

I hope to be able to start on the "right" protocol to kick butt & get as well as possible.  I planned on having my body all used up when I went skidding in to meet our Heavanly Father; however, all the damage the CPNi is doing wasn't factored in.  So a change in plans, just goes to show you who is really in control.

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Dear Ruth, My

Dear Ruth, My goodness...you have certainly been through a lot! How wonderful that you have found this site and can now begin reaping the benefits. You have come to the right place. Most everyone here can appreciate the struggles you have endured and can offer great help. Glad you found us! Blessings, kk2 :)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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 qdi for Babesia.

Thanks kk2, now I just have

Thanks kk2, now I just have to get to my MDs & get going on a protocol.  I have no idea, I see the Wheldon more often & it seems like this is a whole hit & miss thing.   I am seeing, slow is better over & over and that will be hard for me.  thanks for your support.  rCool

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Ruth are you starting on a

Ruth are you starting on a CAPs (combination antibiotic protocol) as outlined here on this site? Have you found a doctor to treat you?
marie

On CAP since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Ruth are you starting on a

Ruth are you starting on a CAPs protocol?
marie

On CAP since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Hi Ruth, Thanks for sharing

Hi Ruth, Thanks for sharing your history and philosophy on health and the body.   I understand where you are coming from, because like you I have done all those things... good food, natural rememdies, vitamins and supplementsi, natural hormone replacement, all of those things I still do, but additionally I have felt the need to add the antibioticsi to give my body and helping hand with this insidious little bug.   

I'm not a type A personality, but the Type A's on this site, have done very well for themselves or their loved ones.   They get what they want probably more effectively than the more mellow members.   But in the end it is our intention to get better that makes things happen.

Like you I have been ill since childhood, and Cpni is the only thing that has made all my collection of ailments make sense.   I have had the most difficulty in making doctors understand some of my symptoms, and I do believe that some of the labels I have been given are incorrect.   I'm probably learning more about the labels given to ailments here on this website than from speaking to doctors.   After all, most of them have not got the diseasesi we have.   Its only when I hear other people describe their symtoms that I get the AHA moment.

As a starting point in this treatment we are advised to start taking the specific supplementsi that undermine Cpn, high dose VitD, N-Acetyl Cysteine and Vit  B12.   Take a look here< for the complete list of what most of us take in way of supplements.

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.