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Tested Finally
By Fundmyster
Created 04/01/2008 - 7:23pm

  • Cpn and specific diseases
  • Infections
My health problems began Aug.31,1997 when I fragmented
a disc in my lower back.I was immediately put on
anti-inflammatory drugs,muscle relaxors,and pain
meds.I rested for a few weeks and seemed better so I
was sent to physical therapy where I reinjured my back
on the second visit.This time I was in extreme pain
having to sleep in the tub to keep the pressure off my
back enough to rest.My doctor wanted to operate so I
sought a second opinion.The doctor wanted to do a
mylegram and CT because he suspected my problem was at
a different level from the one origianlly
diagnosed.The CT and mylegram confirmed the
diagnosis.I was sent home  and plans were made to
operate .Over the weekend I developed a spinal
headache along with pressure in my ears and head.I was
instructed  to go back to back to the hospital to have
a blood patch to relieve the spinal headache.After
this another doctor examined my ears through a
microscope and completed a hearing test.From these
tests I was diagnosed with menieres disease and placed
on a diuretic and a low sodium diet.After three weeks
on all the different meds I became ill at work.I felt
like I was coming down with the flu and my stomach was
upset.Also about this time I developed insomnia going
to bed at 10:30 and waking at 2:30 exactly every
night.This problem and the GI disturbances continued
through the holidays.I finally had my back surgery
after 2.5 months of pain.I hoped to use the recovery
time to deal with my other problems.While off I
visited an internest near Nashville and had numerous
tests and xrays to figure out the source of my stomach
ailments.After many visits and tests I was told I had
IBSi [1], given some pills,and was told I would have to
learn to live with it.I changed my diet at this point
and began some supplementsi [2] to help my bowel problems.I
began to work again still only getting four hours of
sleep per night.After a short time I was completely
exhausted and  a friend of mine who was a physicians
assistant saw me and we began to discuss my
problems.He had a sleeping pill ordered for me and
told me he would check on me in a couple of days.There
was no change from before and he told me I was
suffering from depression.He ordered an antidepressant
Zoloft and told me I would see improvemnts in about
four weeks.I had more energy and rested better  but I
was very nerveous, had terrible anxiety,brain fog,my
stomach rumbled all the time,I had terrible long
skinny foul smelling stools,and began to have strange
tingling sensations and vision disturbances and
dizziness.More tests were done including a thyroid
panel and again nothing was found.I did notice both
times I had the barium exray I was better for a couple
of weeks afterward.I was at the point of giving up
since my condition was worsening and my job was such a
struggle to do since I was unable to concentrate.I
began to spend my spare time on the net looking for
ideas to pursue.After extensive research I scheduled
an appointment with an environmental doctor in
Atlanta, Ga. He did a completely
different set of tests from any others done
previously.My HG level was 19.3 times unchallenged
levels and lead eas 5.1 times .I also had a large
amount of tetrachlorethylene a cleaning chemical I was
exposed to while briefly working for a sign company
after I graduated from college.It also showed candida
,klebsiella,and no lactobacillus in my stool. A porphyrin study  showed coproporyphin levels over twice the reference levels.( )I went
to Atlanta for an extended stay to have my amalgams
removed ,complete chelation,undergo detox for
environmental chemicals,and antibioticsi [3] for my GI.The
chelation and detox made me very ill but I managed to
get through it. The program consisted of taking
several supplementsi [4](niacini [5] the main one), getting on a
treadmill for 20 minutes to increase my heart
rate,then getting into a suana for 30 minutes at 140
degrees,followed by a cold shower immediately, then a
lymphatic massage. The process was repeated 3 times
per day for 6 weeks. It made me really sick and I
could not believe what came out of my body the way my
urine and feces smelled. My GI was at its worst and
sleep was again very difficult.I came back home and
after a couple of months I was improved but still had
terrible GI problems,poor sleep,awful stools,and was
losing weight.Doctor E  tried various antibiotics
but the GI never got better.He wanted to try EPD which
I was skeptical about due to my dysbiosis.I then
contacted another doctor about my GI due to his
treatments using ozone which I never tried.I
corresponded with him for over a year and improved 
but still far from my previous self.Prior to my back
injury I had not missed work due to illness in 12
years and was one of the most active people anyone
knew. I was a a former college basketball player
worked out ran and played golf and basketball on
aregular basis.I then searched for a doctor to handle
my complex symptoms and get to the sources of my
problems.I sought the help of  a well
know CFSi [6] doctor in North Carolina to help my symptoms of terrible GI,
cramps at times,diahrrea, long skinny sinking foul
stools,strange headahes,low body temp 96.5 to
97.5,neck pains,jont pains,muscle weakness(Lost 30
lbs),muscle soreness after and exercise,poor
sleep,coated tongue,sinus problemsi [7],stuffy nose,fluid
in left ear,blocked eustacian tubes,and sore throats
periodically maybe due to allergies and food allergy
/sensitivities.He helped my sleep quite a bit with klonopin,neurontin, and doxepin but my
GI remained a big issue.The headaches came and went as
did the sinus problems.I think the glutathione
injections I took for over a year with Dr P helped me more than anything.My note fro Dr Cs initial consult were as follows.ASSESSMENT: 
Patient meets the criteria for CFS including both
major criteria and six of eight minor criteria. KPS
score is estimated at 80 withanMSQ score of 173.
Physical findings consistentwith this disorder
including hperflexia at the knees and left ankle and
falls on the augmented stance.He also only holds
breath for only 13 seconds indicating 02 transport
difficulty. Laboratory results consistent with this
disorder including evidence of alkaline
blood,dysbiotic bowel indicators, and low glutathione
and sulfate levels as well as pathogenic
detoxification. He has melatonini [8] flat lining and
secretory IGAi [9] deficiency.His syndrome I believe begin
following a flu like illness. Premorbid issues include
significant antibiotic exposure in childhood and
severe sinus infection therapies while in college. He
later found I had no detectable GH levels, GSH levels
were as low as he has seen, very low B-12 levels,very low magnesium levels,low testosterone and androsterone and my Impedance
Cardiographic Report showed distolic cardiomyopathy.(Seen in many CFS patients)  CD8+CD+ was 48 ref 140-1000, %CD3+CD26+ 44 ref 0-30,%CD3+HLA-DR+ 10 ref 0-7%CD4+CD45RA+ was 0 ref 8-52,#CD4+CD45RA+ was 0 ref120-2080, %CD8+CG11b+ was 2 ref 5-45, #CD8+CD11b+ was 48 ref 75-1800 AAL Labs. Cortisol was 6 ref 4-22 Meridian Valley.
I also have a coagulation problem and was on Heparin
and Tranfer 560 short term. It initially caused flu
like symtoms then I got much better. The hemex test
showed I had a coagulation problems and Dr C stated a chronic activation in the bone marrow. I
asked him what that meant and he stated an infection
likely HHV-6. This is when I was put on heparin and
transfer factor-560. The only testing for particlar
infectionsi [10] was completed by Dr M while I was
in Baltimore. Two different tests indicated a
mycoplasma pnuemoniae infection and h-pylori present.
I continue to struggle with my health. The latest
problems I deal with are GI(terrible),sleep(fragemnted
and poor),neck aches like severe arthritis,muscle/joint
pain,chronic sinus issues,awful bowel movements,urine
has awful odor, congestion in lungs and chest along
with a tight chest and some shortness of breath at
times, rapid heart beat comes and goes,fluid in ears,
low body temp,sensitive to hot and cold
temperatures,food allergy/sensitivities, loss of
ability to sweat, low energy and flu like feelings
come and go. I was finally tested for CPNi [11] yesterday and feel I have a combination of infections with CPN and mycoplasma pneumoniae being the main culprits.I to finally get the test results to support my intuition about the sources of my health problems so I can seek help from people like Dr P who have experience all the issues surrounding these problems. Sorry for the long post but I do feel better sharing with people who understand the long roads traveled to get answers.I pledge to not give up and to find the answers to my health questions.                               



    
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‹ interesting note from a doctor. [12] Lyme, CPN or Something Else? › [13]

Welcome Fundmyster, wow, you [14]

Submitted by ruthless1 on Tue, 2008-04-01 19:55.

Welcome Fundmyster,

wow, you have been through it, that is for sure.  My bio reads quite similarly to yours.  We are all too familiar with what happens to life, our lives because of chronic illness.

It is the best news, you are here!  I would suggest you pay attention to the supplementsi [2], NACi [15] & take the science your doc will need to prescribe.  It is time for you to start down the path back to better health.

This ride is not going to be easy, I will tell you for sure.  You will need to stock up on the remedies for toxin removal.  If your doc hasn't addressed secondary hypothyroidism or Hashimotos yet you may want to check that out.  That is a common problem for "us" who have ME,

Blessings for your journey & expect the unexpected.

CFIDSi [16]/ME 25yrs, FMSi [17], IBSi [1], EBVi [18], Cpni [11], (insomnia - melatonini [8], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

___________________________________________________________

CFIDSi [16]/ME 32 yrs, FMSi [17], IBSi [1], EBVi [18], CMV, Cpni [11], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [2] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [19]/day-3 days

»

One thing I must mention

Submitted by Michèle on Tue, 2008-04-01 22:49.

One thing I must mention reading your post, is that nothing, especially IBSi [1] is going to get better quickly. Its only after two years of treatment that I am beginning to get some improvements to mine. Another thing worth mentioning is that negative result for Cpni [11] are not necessarily proof that you don't have a chronic infection. NACi [15] is considered a more reliable indicator of a Cpn problem. Start with 600mg daily and increase steadily to 2400mg a day. If you have flu like symptoms you most probably have a cpn infection.

Michèle (UK) GFAi [20]: Wheldon CAPi [21] 1st May 2006. Daily Doxyi [22], Azi MWF, metroi [19] pulse. Zoo keeper for Ella, RRMSi [23], At worse EDSSi [24] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [20]: Wheldon CAPi [21] 1st May 2006. Daily Doxyi [22], Azi MWF, metroi [19] pulse. Zoo keeper for Ella, RRMSi [23], At worse EDSSi [24] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

»

Thanks for the responses.

Submitted by Fundmyster on Wed, 2008-04-02 07:12.
Thanks for the responses. It is interesting to hear about the IBSi [1] problems improving since my GI has been in such bad shape for so long. I have tried NACi [15] before and have awful Herx type reactions. Can this be from die off or what? Does the NAC kill bugs that much?
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 Fund -  Welcome!  Re [25]

Submitted by Daisy on Wed, 2008-04-02 08:00.

 Fund -  Welcome! 

Re your NACi [15] response.  Awful Herx type reactions?  Could be a couple of things would need to know such as dose you took, for how long,  as well as what you are classifying as an awful Herx. 

Anyway - here are some possibilities/theories:

1) NAC can kill Elementary Body (EBi [26]) form of CPNi [11] giving what is usually called NAC Flu here.  Runny nose, drainage, flu like feelings, convinced you are coming down with cold or allergy attack.

2) NAC is known to cause mucosal thinning.  Used in Cystic Fibrosis patients.

3) NAC is known to dissolve the disulphide bonds of mold gliotoxins.

4) NAC is the precurser to glutathione formation.  Glutathione is one of the major detoxxers of cells in your body.  So if via NAC supplementation you create an elevation in glutathione - your body may undergo increased detox making you initially feel the effects.

Daisy - Husband on CAPi [21] 5/07.  Minoi [27], Roxyi [28], Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi [22], Azithromycin, Flagyli [19]

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Daisy - Husband on CAPi [21] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

»

Daisy the doctor that gave

Submitted by Fundmyster on Wed, 2008-04-02 13:07.
Daisy the doctor that gave me NACi [15] was using it to rebuild glutathione levels. I also was given so many other supplementsi [2] for various reasons that I am not 100% certain it was the culprit for the way I felt. I do remember thinking it was the cause of the flu like/ terrible headaches I started having. I only took it and other things for a short term because I was battling so many issue at once we decided to cut back to a core group of supplementsi [4]/meds to give my body a chance to settle down. I never tried these items again because I started seeing Dr C for CFSi [6] and he uses whey protein to rebuild GSH stores and stimulate the immunei [29] system. It has been over 10 years since I tried NAC so it will be interesting to see how my body reacts when I introduce it again. Thanks for your thoughts and input. You seem well informed. 
»

How long does it take for

Submitted by Fundmyster on Thu, 2008-04-03 07:39.
How long does it take for any side effects caused by NACi [15] to be eliminated? How can one determine if the NAC is killing CPNi [11] or forming glutathioe? Thanks
»

Fundmyster, I have almost

Submitted by Lynnp on Mon, 2008-06-30 23:11.
Fundmyster, I have almost everything that you describe!  I started the chronic sinus infectionsi [10] in 1990, ruptured disc and surgery in 1994.  1995 started fmsi [17] but didn't get diagnosed until 1996.  Disability 1997 and horrible onset of fms, tinnitusi [30], cfsi [6], have had ibsi [1] since 14 yrs old.  Allergies horrible, candida, heart ablaution for svp - I have mitral valve too.  Was really sick as a child and on a lot of antibioticsi [3].  Have sticky blood, low thyroid, fungal sinus infections, sleep problems, neuropathy bad that I can't sleep for pain.  Took neurontin and gained 10 lbs so quit.  Strong urine smell, chronic constipation, shortness of breath etc!!!  How are you doing on CAPi [21]?  I find out this week about my blood tests but my doc is sure I have cpni [11] and more and he does CAP.  Remember, it took us a long time to get this sick so I figure it will take a long time to get well but when I'm well, look out everyone!  I used to bounce off the walls before 1980 so I have a lot of catching up to do!

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FMSi [17]/CFS 1995. tinnitusi [30], ibsi [1], sinusitis, EBVi [18], NACi [15] 2400mg, valtrex, cortef, armour, doxy, azith, flagyli [19], calcium pyruvate, vita c 10,000 daily, etc. 

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