+100%-
+100%-

The ME/CFS/FM Experts Panel is back! The panel is a group of ME/CFS/FM doctors who’ve agreed to look over a patients case in detail and provide their recommendations. It was Carly’s turn this time.

carly- chronic fatigue syndrome

Carly – beautiful on the outside – hurting on the inside

It’s not fun being Carly right now – and it hasn’t been fun for quite a while.  She was completely healthy until age 16 when she came down with a flu she never recovered from. Eighteen years later, she still experiences constant fatigue and flu-like symptoms.

She has endocrine issues, gut bacterial problems and most recently a positive PCR test for parvovirus. Her system is so unstable that she can’t handle medications that help her. On a scale of 1-10 in functionality – she reports she’s at a three.

Basic Details

  • Gender  – female
  • Prior State of Health  – excellent
  • Duration of Illness – 10-18 years
  • Current Age – 34
  • Co-Morbid Disorders – Hashimotos, Thyroid problems, ME/CFS
  • Functional Level (1-10  – 10 being the highest) – 3

How It Started

Carly’s Story “It began with the flu overnight. I was completely healthy before that point although there was a period in which I was more stressed prior to the infection. I was age 16. I was very healthy prior to this infection. I picked up but never regained my energy and had to pace myself to attend college and university. But I wasn’t terrible and had no awful symptoms – just fatigue and bouts of flu again. Five years after university I crashed completely and there had been scary symptoms appearing for the final year.

unstable system

None of the things Carly has tried have been able to stabilize her system.

I had taken antibiotics and I believe my thyroid was failing but that wasn’t picked up in the tests.

Eventually very high antibodies to thyroid showed showed up and I was border-line lupus but never positive. (Using diet I have now reduced my thyroid antibodies from 3000 to 43 myself.)

I was in bed for a couple of years. I was very sick and very anxious. I needed full care.

Then, I was housebound and now I am a bit better but for all my efforts (which are great) I cannot get out much and have constant symptoms which change a lot. I seem to respond oddly to medication I need like thyroid meds despite trying every option available. It is the only thing which makes some difference to my very low energy levels. But I get many symptoms trying to force the medication too.

It’s a constant roller coaster with no baseline. I’ve been in a roller coaster pattern for 13 years and cannot stabilize at all. I recently discovered I have active parvovirus b19 virus (PCR test) but have negative IgM. I have some IGG positive levels. I believe the parvovirus is affecting my endocrine system badly. I do not know why my immune system is compromised and cannot fight this virus or what else I could have.

Carly has recently created a new wellness website – Living Brightly – where she explores how to live a purposeful life in the midst of illness.

Symptoms

What sleep issues, if any, do you have?  What are your sleep and napping patterns?

I sleep mostly fine. I can wake with an adrenaline rush if my thyroid gets too low or too much to handle. I nap during the day for an hour, but I cannot work or go out much due to energy. I  sleep about 9 hours at night – and I’m in bed a lot more.

Where do you feel pain and how severe is it?

fatigue fluey symptoms ME/CFS

The fatigue and fluey feelings have limited Carly the most.

Pain is better since I went gluten free and cut inflammation down with diet and work. Pain is fine really although I do get days where I feel like I’ve been run over and hurt, but that isn’t what limits me – it’s the heavy constant fatigue, and weakness and basically feeling as though I have the flu. All the work I’ve done has helped massively in areas, but has made no difference to my ability to have a normal life so we are missing something major.

What happens when you try to increase your activity level, such as starting a walking program or doing yoga?

If I do too much I will feel sick and it’s almost like my body goes into shock. It’s not a case of pushing through. Wish it was. I often will go to sleep after. But I feel no better doing or not doing it. It’s just pushing myself makes my body unable to cope further.

Do you have sinus symptoms? Have you ever been treated with Diflucan? 

No and no.

Do you have any place in your body that seems “infected”—sore throat, cough, sinuses, etc? and what are the symptoms?

Not really I do get sore throats but again not major. Just general flu weakness really.

Testing

Endocrine and Hormone Tests

  • Thyroid tests fluctuate
  • Current TSH -1.8
  • Current T4 15 (9-19).
  • Thyroid antibodies have dropped from 2000 to 40 with diet.

How was adrenal insufficiency diagnosed? 

Cortisol saliva tests and trial and error over the years.  Cortisol is flat all day. A recent consultant suspected Addison’s but we didn’t test as knew likely to be officially negative and would restrict treatment . I don’t have Addison’s I don’t think but the HC (she’s taking 15 mgs) is a life saver although I feel worse on higher amounts. I believe it allows the thyroid hormone to get through to the cells.

Do you know morning salivary cortisol levels?  

Not I had it checked for a few years. It’s generally just below the range.

Have you ever had these tests done? –  FSH, LH, estradiol, prolactin and progesterone levels.

Probably but were all normal. Tried prof cream in past. Was fine but didn’t impact health.

thyroid chronic fatigue syndrome

Carly experiences both increased energy and signficant side-effects from thyroid medication

Thyroid – Re – thyroid – it varies so much. My temp can be very low or very high. I cannot tolerate any thyroid medication at the moment at all. I think my own thyroid is improving but not enough to explain the weird symptoms I get when I take meds. Thyroid meds give me enough energy though to have a walk – but then the side effects begin.

Any symptoms related to your periods or possible estrogen/progesterone issues?

Yes. I always had awful periods from before the illness – but always regular and normal flow, etc. They have been better of late.  I sometime get some spotting a few days prior. If I don’t take hydrocortisone I would faint and be sick during my periods so that’s related to weak adrenals obviously. Now, with the hydrocortisone I feel better but I still have to lay down/ go to bed during my period each month.

Immune and Pathogens

  • Positive for Parvo B19 PCR and IgG, Negative for IgM.
  • Gut bacteria – beneficial bacteria lactobacillus specius = no growth; bifadobacterium – low at 2 (suggested should be 4); geotrichum species =2 – which is slightly in ‘potential pathogen’ range. Low levels of good bacteria in gut despite probiotics, excellent diet, supplements etc.
  • Pathogens – negative – Cryptosporidum, Giardia iambia,  entamoeba, campylobacter, enterohemorrhagic escherichia coli

Have you ever been tested for HHV-6 and CMV?

  • CMV – IGG antibody negative. No results for the other one.
  • EBV  – IGG negative.
parvovirus

Parvovirus showed up recently

However, with the Parvo virus the IGM antibody was negative yet positive in PCR.

Have you ever taken antivirals? If so which ones and for how long? 

No, just on a herbal one called Botanical shields but have not looked into virus field before recently so have not done anything.

Autonomic Nervous System

What is your BMI, blood pressure and pulse?  BMI – low but weight good for me and stable. Nutrition is excellent. I’m on a nutrient dense paleo-style diet.

  • BP – low, but helped with the hydrocortisone.
  • Pulse – varies depending on the dose of thyroid medication I am on. 60-70-ish is normal. It can go high though, and a bit lower.

Have you been tested on a tilt table? 

No, I assume I would fail this test. POTS highly likely. Never wanted to put myself through it as Doctor said there’s no treatment anyway. My BP often drops upon standing. Always did before the HC.

Do you know your resting blood pressure? 

Varies but approximately 100/65. It can be higher though, at times, but vernally always had low blood pressure. It was super low when I was much sicker.

Have you been tested for small intestinal bacterial overgrowth (SIBO?)

No. I have had gut testing though and no parasites or stomach issues showed up. I don’t feel I have gut issues other than immune wise. I have very low good bacteria of lacto and bifidus levels despite taking good probiotics, though.

Others

  • MTHFR and other mutations being treated.

Medications Taking

  • Thyroid – natural desiccated thyroid – can barely tolerate 1/4 grain so cannot get stable. I think thyroid function is improving but this is complicating things as I feel I do need more but cannot tolerate it due to side effects. I get an energy boost from it but then suddenly I experience  higher temperatures (but also low at times) and feel nervous, dizzy, tense and shaky, have ear pressure, jaw ache, blurry, bloodshot eyes,  weak muscles. I feel exhausted when I take more than 1/8th grain. But then without any I feel very weak and cannot get out of bed and start to feel quite unwell, too.
  • Hydrocortisone – 15 (mgs?)

Have you tried IVIG? 

  • No – this is what I need to explore though.

Recommendations

Dr. Kaufman (Infectious Disease Specialist)- Parvovirus

bad-virus

For our infectious disease specialist the parvovirus was the standout finding.

For Dr. Kaufmann is an infectious disease specialist associated with the Open Medicine Institute. He formerly focused on HIV/AID – but reportedly got interested in ME/CFS because he needed a real challenge (:)). For him he answer was simple – the parvovirus is the standout finding. Forget the IgM abnormalities, a PCR positive parvovirus tests means Carly has an active infection.  He said

“She needs to be treated with IVIG if she is Parvo PCR positive. That is the only effective treatment. Being PCR positive is clearly abnormal regardless of IgM status.”

Dr. Ken Holtorf, MD- Lyme, Immune, Mitochondrial and Endocrine Enhancement

kent holtorf

Dr. Holtorf specializes in endocrine issue.

Dr. Holtorf would take a deeper look at her immune functioning and check out Lyme (“sounds very tic-borne illnessish”). (He recently asserted at the LDN conference that Lyme is much more prevalent than many suspect. )

He would also check out clotting factors in her blood. At the LDN conference he noted how often  heparin (I believe it was) was effective in his patients (see the Berg studies). Dr. Holtorf is also an endocrine specialist and recommended a series of endocrine tests plus possible trials of low dose naltrexone, a little Ritalin perhaps for the fatigue and mitochondrial support. The next steps  after that would depend on the lab results.

“As a starter, I would want to order a natural killer cell function (Quest)(can also do a CD57 from Labcorp), a C4a (Quest), Eosinophil cationic protein (ECP) and vascular endothelial growth factor (VEGF), HHV6, Thrombotic marker panel (d-dimer, thrombin-antithrombin complex, Prothrombin 1& 2, soluable fibrin monomer (SFM) and plasminogen activator inhibitor-1 (PAI-1) along with a Lyme culture from Advanced or an antibiotic provacated Lyme WB from IGeneX, a TH1-TH2 cytokine panel and a nagalse level. Sounds very tic-borne illnessish.

Would bet there would be significant positives, as something infectious is driving her immune imbalance TH1-TH2 shift, autoimmunity and autonomic dysfunction. Lots of options after get these results back. Consider treating underlying cause along with immune modulators, heparin, etc For the thyroid, would stay off gluten and continue high dose probiotic, of course, and try a course of low dose naltrexone (if not on a narcotic) and low dose allergen.

Would check thyroid panel and SHBG to titrate up (likely straight T3 would be best choice), following labs, symptoms, thyroflex, body temp, etc. Follow cortisol and ACTH and adjust her cortisol level.

Can try a little Adderall in the meantime to see if helps the fatigue while figuring out underlying causes. Would start on a combination of ozone and UVI along with IV silver and nutrient with glutathione therapy (maybe IVIG and/or Regenapep. Cell therapy could be of benefit. Again, many options depending on above lab results.

Can try pyridostigmine, testosterone or Myopep for the weakness or DDAVP nasal spray for the low BP and Isoprinosine as a broad spectrum antiviral immune modulator. Mitochondrial support usually worth a try and a basic. Sleep sounds OK but Xyrem may be an option for a deeper sleep if others have been tried such as melatonin.”

Courtney Craig – Chiropracter and Nutritionist

Courtney Craig is a nutritionist and chiropracter

Courtney Craig is a nutritionist and chiropracter

Courtney Craig and Dr. Holtorf both agree that a gluten-free diet is indicated given the possible diagnosis of Hashimoto’s. Courtney Craig recommends various supplements, a very low carbohydrate diet, and intermittent fasting to, among, other things – improve mitochondrial function

“I’m glad to see Carly has already adopted a nutrient-dense, Paleo diet. Given her Hashimoto’s diagnosis, a gluten-free diet is indicated. Several studies have demonstrated high prevalence of thyroid patients have celiac disease or non-celiac gluten sensitivity. Many improve with gluten avoidance (1,2).

To support overall thyroid health, I would suggest adequate dietary selenium and iodine. Good sources of selenium are Brazil nuts and shellfish. Sea vegetables are rich in iodine, as is sea salt. Dietary strategies to address the adrenal fatigue may include a very low carbohydrate diet to stabilize blood sugar. Getting adequate protein in the morning supports adrenal function by stimulating cortisol production upon waking.

It’s also important to consume abundant vitamin C, with low-sugar citrus and/or supplementation, for the biochemical conversion of adrenal hormones.

Lastly, electrolytes are essential for adrenal function. Increasing dietary salt intake throughout the day in addition to adequate magnesium can be beneficial. Supplementation with a multi-mineral has been shown to improve many CFS symptoms, including autonomic dysfunction, anecdotally and in some small studies (3).

To support immune health, in addition to a nutrient-dense diet, I like to recommend periods of intermittent fasting. Studies show 16-18+ hour nutritional fasts can stimulate mitochondrial health and effect immune cell function (4,5). These effects can be safely obtained by eating during an 8-10 hour window and consuming adequate water and electrolytes.”

1  Sategna-Guidetti C., et al. (2001) Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Am J Gastroenterol. 96(3):751-7. http://www.ncbi.nlm.nih.gov/pubmed/11280546

2  Guliter S., et al. (2007) Prevalence of coeliac disease in patients with autoimmune thyroiditis in a Turkish population. World J Gastroenterol. 13(10): 1599-1601 http://www.wjgnet.com/1007-9327/13/1599.pdf

3  Maric D., et al (2014) Multivitamin mineral supplementation in patients with chronic fatigue syndrome. Med Sci Monit. 20:47-53. http://www.ncbi.nlm.nih.gov/pubmed/24419360

4 Cellular Spring Cleaning: Intermittent Fasting for CFS. 8 May 2014. http://www.drcourtneycraig.com/blog/intermittentfasting

5  Longo VD, Mattson MP (2014) Fasting: molecular mechanisms and clinical applications. Cell Metab. 19(2):181-92 http://www.ncbi.nlm.nih.gov/pubmed/24440038 ______________________________

If you have any suggestions for Carly please pass them on. 

Check out Health Rising’s new ME/CFS, FM and Chronic Pain Forums here



THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL

Coronavirus vaccines

Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.

Don't Miss Another Blog!

Like this blog?

Make sure you don’t miss another  one by registering for our free ME/CFS and Fibromyalgia blogs here..

Pin It on Pinterest

Shares
Share This