dear Lloyd,

i am sending a summary of my wife?s problems for which i want to consult you . she had pan hysterectomy in july02 and five weeks later she developed acute hepatitis C.this subsided on its own and a year later i showed her to dr williams at london at which time her C COUNTS were negative and hence no treatment was advised.after one year in july 04 she again got tested there and had very low count with normal enzymes and hence preferred no treatment. she was detected hypothyroid.in march 05 and was treated with eltroxin.during the monitoring of her thyroid we tested her for liver enzymes which flucuated at 3-5 higher,hence on suspiscion her hcv rna was tested and reported high. at this point she was advised interferon and ribavarine as per protocol for 24 weeks. she was very fit at the start of therapy except little obese.after seven injections she became neurologically handicapped. it is now ten weeks since her last injection and she has shown only 20 -30% RECOVERY.her nystagmus ,cerebellar speech have recovered but ataxia although less but is still disabling along with recent memory impairment and some parkinsonian like walk but very little rigidity. she has some abnormal movements in hand.i am concerned as no definite diagnosis is made except interferon toxicity which is reported to be very rare, on the mri the radiologist gives a gloomy picture of degenerative disease. she has definitely improved symptomatically though precious little but not progressed. i am pasting her full report again, and would request you to kindly give an opinion as to what should be done now to get her back from this mess

vk

53 yr female, 74 kg weight, 5 ft 2 inches in height.

She contracted HCV infection in July 2002 following a uterus surgery. She was fully active till such time with a past history of hyperthyroidism 10 years back treated with neomercazole for 9 months and she became euthyroid . She is also border line hypertensive since 2000 on regular medication Atenolol plus hydrochlorthiazide initially now on amlodepine

Her post operative period showed a slight fluctuation of BP for which one unit of fresh whole blood, donated by her son was transfused. Pre-Op cross matching for hepatitis B and C were negative in both blood samples and all baseline LFTs were within normal range. Apart from that her post op recovery was fine and she was also put on Hormone replacement patch biweekly which continued for 5 weeks. 5 weeks after surgery she felt slight itching and mild anorexia along with vague abdominal symptoms. This lasted for 3-4 days , mild icterus was noted and first LFT was performed which showed raised enzymes and bilirubin. Acute hepatitis lasted for 6 weeks and the subsided on its own. She was diagnosed as Hepatitis C positive. At that time no active treatment was done for the Hep C and acute hepatitis subsided on its own.

She was followed up by the local gasteroenterologist regularly since then and on 28-2-2003 the HCV RNA qualitative test was reported as Positive and subsequently on 14-3-2003 HCV RNA Quantitative B-DNA was not detected (<0.2 x 106 ) Then again on 12- 6 -2003 HCV RNA Quantitative load was reported as 37,000 IU She continued to remain asymptomatic following her daily routine, exercise and normal appetite.

She consulted Prof Roger Williams in Cromwell hospital, London in July 2003 which was a year after the surgery and another HCV RNA was done and HCV was not detected with normal LFTs. Hence she was not advised any treatment. For the next 1 year she remained absolutely fine and made a routine follow up visit to Prof Roger Williams in Cromwell hospital , London in July 2004 , another HCV RNA was done this time it showed 6000 copies with normal LFTs. She was given a choice of either going in for a biopsy or in view of the very low titers and normal LFTs or she could wait till more advanced treatment was available. So she naturally chose the later.

She was fine after that till about December 2004 when she noticed some mild symptoms like generalized fatigue, sleepiness and got her thyroid functions repeated and was found to have a hypo thyroid state and started on l Thyroxine and maintained at 50 micro gm /d. at this time her SGPT was found to be in the range of 400, then 100 and then 250 which was initially attributed to the hypo thyroid state and was expected to come down with l-Thyroxine. However the LFTs continued to fluctuate in the region of 2 ? 5 times the normal. She then got her HCV RNA repeated with was this time found to be grossly elevated 656,000 IU/ L

On 7/7/05 she was started on weekly Peg IFN alpha 2a (PEGASYS ,Roche) and Ribavarin 800 mg /day. The initial 3-4 weeks did not show any side effects except for the odd fever after the injection subsiding with acetaminofen for 2 days. Her hemoglobin however continued to drop @ of 0.5 gm/ week due to the ribavarin induced hemolysis . Her total counts pre treatment were 8000 which fell to 4400 and were stable at that level in the following weeks

After about 4 weeks she noticed some recent memory loss and generalized fatigue which were attributed to the Peg IFN and ignored as they are considered reversible. Then she started getting unsteady in her walk and in the 6th week had a couple of falls also without loosing consciousness. She felt week in her knees and was unsteady in her gait.

On 18th August 2005 her 7th Peg IFN was due and duly given. Her hemoglobin by now had fallen to 9.2 gm% from a pretreatment level of 12.7 gm% and thyroid functions were normal.

She consulted a neurologist on 18th august and was found severe truncal ataxia, recent memory loss, gross horizontal nystagmus, cognitive impairment in memory and calculation, essential tremors, mild cog wheel, palmomental reflex +ve Rt > Lt and down going plantars. she got an MRI done on 19/ 8 /05 the MRI showed Basal Ganglia hyperintense lesions on T2 weighted as told by the radiologist

The week from 18th to 25th was the worst when she again had tremendous recent memory dysfunction, frequent falls, a very unsteady gait, panic attacks in the night leading to awakening 5-6 times in the night with wild dreams and abnormal movements during light sleep, (Video seen by the neurologist here and described as choreform movements

She was advised to stop the Peg IFN and ribavarin immediately and was started on a number of neurotropic agents including, choline, lecithin, piracetam, methyl cobalamin, Lycopene, ,thiamine, Coenzyme Q10, vitamins and clonazepam at night

The next Peg IFN dose due for 25th August 2005 which was duly missed . her symptoms improved including memory dysfunction which is milder now, no more falls, but continued to have an unsteady gait and abnormal movements which although fewer and occurred during lighter sleep .

She again consulted neurologist on 1st September who felt that the signs all though lesser were still there. No nystagmus now, no in co-ordination, but ataxia and recent memory lapse still persisted

She also consulted a neurologist on 2nd September who got a repeat MRI done on 2/9/05 .The MRI showed same Basal Ganglia lesions and the radiologist felt that they were same as before. The spectroscopy showed abnormalities within thalami and basal ganglia, with presence of lactate and abnormal increases in glutamine, myoinositol and creatine. The findings were suggestive of astrogliosis and abnormal cellular oxidative phosphorylation suggestive of ? interferon toxicity among other differential diagnosis was reported by the radiologist in Bombay

We consulted Roche , the makers of Peg IFN who said such symptoms have been reported albeit very rarely in their surveillance papers but they did not have any MRI picture of the corresponding patients. They told us that the t ? of Peg IFN is 80 hours so technically about 28 days will take for the drug to get washed out.

Another independent opinion was sought from a third neurologist who felt that a possibility of MS was there which may have been triggered by interferon. In view of the divergent opinions a definite diagnosis is yet to be established . a MRI of the Spine was done on the 18th of October which was normal. Both VEP latencies were increased , with early optic atrophy on fundus and normal NCV. A repeat MRI of the Brain was done on 22nd October along with diffusion tensor imaging. The T1,T2 and FLAIR images as per the radiologist remain almost unchanged with no progression of the lesions but at the same time no regression either. She has also been put on donezepil for last 4 days. She was empirically given a 500 mg dose of methyl prednisolone on 26th October but with no appreciable change noted, but due to the controversial action of steroids and an uncertain diagnosis it was not continued further It is almost 11 weeks since the last injection on 18th august and she continues to have the symptoms, recent memory dysfunction , continues to have an unsteady gait and abnormal movements. She also gets some mood swings occasionally for a few minutes. And recently some urinary hesitance for last 1 week.

The diagnosis still remain unsettled and therefore a specific treatment cannot be started . what can be done for her now ??? can you suggest some additional medication to get her back neurologically

eagerly awaiting a response
thanks

Hi:

I have a interferon message board at www.LloydWright.org
What you are describing happens all the time. People call here everyday describing everything you wrote and more.

Interferon does this to more people than the companies or the FDA wants you to know. Interferon is neither safe nor effective. It is only approved for use because the CBER considers that there is no alternative.

Many people die from interferon use. Many of the murder-suicides you hear about on the radio and TV are committed by people on interferon.

I have permanently damage from this drug which I used 10 years ago.   What I see over time is that most people with these symptoms will have some diminishment over a few months and that is it.

Most people do not completely recover as these problems are usually from brain damage in the brain stem, neuro transmitters.

I can suggest some items to try:
NADH 2.5 mg to start, one in the morning.
A good diet can help
Milk thistle 400 mg 3 x day
Lipoic acid 300 mg 3 x day
Selenium 400 mcg per day
Dandelion root tea, 1 quart per day
Milk thistle seed tea, several cups a day.

If you can have do more:
Natcell thymus 1 vial every other day
Properly prepared aloe, 4 oz 3 x day
Vitamin C to tolerance

You could try Natcell CNS, I do not know if it will help but it may. CNS is Central Nervous System and Brain You could also try Natcell Mesenchyme as this item can repair damaged cells.

I have not had much success with repairing serious damage from time released interferon. Most people are lead to believe that their problem is from the virus and they just go into disability. Few do much about it.

There is a class action law suit posted on my message board if you are interested.  I am on a Crusade to stop people from using interferon! I preach "Just Say NO to Interferon"! On every radio show I do, everywhere I speak, all over my website. I am the one who sees thousands of people who have been permanently damaged by this drug and I see and hear the doctors claim that it is HCV to avoid a malpractice case.

Interferon is the treatment that is worse than the disease.

In good health
Lloyd