newbie needs help

cape cod massachusetts
I am newbie with CFIFDS very severe and waiting for repeat xmrv testing through vip. certain it will be positive now as I react very strongly to any small amount of antiviral treatments that have been tried. Neurological symptome severe in nature massive headaches severe cognitive dysfunction, brain inflammation, seizure disorder, exhaustion music right side of head, insomnia, severe chemical sensitivies, blurred vision. Have been treated for lyme and coinfections without success. I did test POSITIVE for Dr Fry mystery PROTOZOA. My viral titres are high ebv, HHV6, parvovirus, herpes. Need name of advocate and practitioner who will be able to help as I am too sick to develop course of care and treatment be it holistic or rx as am too sick and don't have anyone to manage care. I live on cape cod 2 1/2 hours away from boston. I have read that lyme and xmrv go hand in hand. Symptoms are getting worse and worse.


Senior Member
Hi capebite your post concerns me greatly, you say you have symptoms like seizures and brain inflamation, these are symtoms of other serious conditions, they are not in any of the diagnostic criteria for CFS which means something else is going on.

I don't know your history, or how well you have been investigated for other conditions that may be causing your symptoms, but i do know that once someone has been given a diagnosis of CFS most doctors will atribute every symptom under the sun to the patients condition, which there not suposed to do.

If you have not had every other medical posibility for your symptoms properly investigated and ruled out, my advice is to seek immediate medical attention, in case something serious has been missed, by doctors atributing all your symptons to CFS

Take care, All the best


Senior Member
Seizures, neuro inflammation entirely consistent with persistent viral infection

Hi Capebite, Not posting much these days as I'm in a deep relapse too, but I didn't want this to go unanswered without validating that yes, in fact, there is a great deal of evidence that your neuro symptoms might be ME/CFS related. Of course you want to rule out other conditions, however the assertion that ME/CFS has no physical findings is not consistent with the facts. Since when do physicians arbitrarily declare that a given disease has no physical findings? What an excellent way to stunt learning on a disease.

It is a known finding that persistent viruses such as PVB19 can cause endothelial inflammation (which causes either vasospasm or occlusion of the microvasculature in the body: brain, heart, you name it). In fact, one of our best-known advocates - Andrea Whittemore - has had serious ME/CFS related seizures for years. Additionally, I'm reminded of the spinal cord autopsy results on Sophia Mirza, which found severe inflammation on her death.

I personally experience symptoms very similar to what CBS writes about in one of the excerpts below. In both of our cases, aggressive BP management helps, and in mine, IVIg also helps hugely with my cardiac and neuro symptoms of endothelial inflammation.

Just a few of the many examples of seizure or seizure-like activity in ME/CFS:

Early research by Dr Peterson
Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S39-44. Chronic fatigue syndrome in northern Nevada.Daugherty SA, Henry BE, Peterson DL, Swarts RL, Bastien S, Thomas RS.
Department of Family Medicine, University of Nevada School of Medicine, Reno 89557.

The clinical and laboratory findings from studies of patients with chronic fatigue syndrome (CFS) from northern Nevada are summarized. Physicians caring for these patients have estimated that greater than 400 patients with CFS from northern Nevada and nearby communities in California were identified between 1984 and 1988. As a result of these studies, a cluster of clinical and laboratory features associated with the illness in moderately to severely affected patients has been identified: profound fatigue of prolonged duration; cervical lymphadenopathy; recurrent sore throat and/or symptoms of influenza; loss of cognitive function manifested by loss of memory and loss of ability to concentrate; myalgia; impairment of fine motor skills; abnormal findings on magnetic resonance imaging brain scan; depressed level of antibody to Epstein-Barr virus (EBV) nuclear antigen; elevated level of antibody to EBV early antigen restricted component; elevated ratio of CD4 helper to CD8 suppressor cells; and strong evidence of association of this syndrome with infection with human herpesvirus 6. More-serious and longer-lasting neurologic impairments, including seizures, psychosis, and dementia, have also been observed in some of these patients.

Neurological CFS: Patients have more severe cognitive symptoms than patients in the other groups, including trouble thinking, remembering, and paying attention. While cognitive difficulties affect the vast majority of patients with CFS, this group experiences significantly more severe symptoms. Visual-spatial problems are common as are sensitivities to light and noise. Other symptoms in this group include seizure-like episodes and other abnormalities suggestive of temporal lobe seizures. Patients in this group tend to have severe sleep problems in which they never achieve stages 3 or 4 of the sleep cycle, awaken unrefreshed, and respond well to sleep-improving drugs.

It is false that seizures, ataxia, and paresis are uncommon in CFS. They are only uncommon if one defines them as not being part of the CFS pathology. Why in Demitrack's treatise do the more seriously ill drop out of the discussion? Why would he want to exclude the more serious cases from study? Couldn't more be learned from them? The only plausible answer is that learning is simply not a goal here. The seriously ill are excluded from study because they testify against the behavioral hypothesis.
Read the post by CBS in particular:
In CFS you can also have absence seizures with "epileptiform" waves which are not, however, the classic "spike and wave" pattern of conventional epilepsy. These are triggered in CFS by a lack of oxygen in the brain, either through low oxygen uptake or through hypoperfusion (inadequate blood flow).

All my seizures were caused by inadequate blood flow to the brain as a result of a heart arrhythmia. I had no idea my heart was doing anything funny but the big clue here was that I never had an aura before an attack. Since heart surgery I have had no seizures.

I wanted to comment on what Athene wrote. I had relatively minor CFS symptoms until May '08. One day I was in theater and I blackout right in the middle of the climactic scene (Ironman). Over the next several months I started to have dozens of TIAs (blacking out due to lack of blood flow to the brain) a day, I developed palsy on the right side, periods of aphasia, and both retinas started to detach.

The cause for all of this was extremely high spikes in BP. According to my neurologist and cardiologist, the huge jumps in BP forced so much blood into my cerebral vessels that the pressures/hydrodynamics of the cerebral vascular system would fail (backup) and areas of my brain were no longer receiving enough blood. In response, my nervous system would sense a shortage of blood to the brain and send a signal for more and my HR and BP would jump even higher, a vicious cycle.

My BP wasn't always sky high (but during a week of head scratching visits to the ER my systolic was often in the 160-170 range) but my docs had me wear a Holter monitor for a day (measures HR, not BP but the erractic HR clued them into the problem), then admitted me for a day of observation.

My cardiologist prescribed an ace inhibitor (for BP), raised my beta blocker dose (for HR) and told me to be patient. Sure enough, 10 days later my BP dropped and the TIAs/blacking out stopped. A month later my eyes started to heal (I too am on hydrocortisone - 10mg on waking and 5 mg at noon - secondary adrenal insuff.) and this along with stress and gender were blamed for the retinopathy - turned out that the hydrocortisone may have made it more likely but I am still on it, I'm still male, and my eyes have healed very nicely, thank you! All my retina specialist could say was 'Wow!'). Turns out the vessels between the retina and the back of the eye were so engorged when my BP would spike that they were separating the layers of my eyes. For me, all of this appears to be part of a larger autonomic problem.

Bottom line Capebite, do not ignore your neuro symptoms. Do push for differential diagnosis, get your BP checked, and if indicated by your physician, make sure your BP is managed. If you are eligible, (a biopsy-confirmation of persistent PVB19 was all I needed, but I'm in Canada) see if Immunoglobulin therapy may be an option. I agree with the earlier poster that Dr Komaroff at Harvard may be able to help you - or point you in the direction of someone who could. Dr Komaroff's email address is:

You might also wish to connect with Dr Kirstin Loomis @ the HHV-6 foundation, who is extremely knowledgeable in the sequelae of HHV-6 infection, and possible avenues of care. Kirstin's email:

And of course the WPI may be able to help - you can email them through their general address at:

Wishing you good success - do push for biomedical care, don't discount the possibillity that your neuro symptoms may be ME/CFS related. it sounds as though you urgently need it.