EAMom Posted February 4, 2012 Report Posted February 4, 2012 (edited) Hi Bay Area Peeps, Norcalmom or anyone else (also anyone familiar with CFS), My friend's dd (14)was has Chronic Fatigue...sleeping 16 hours a day. She's recently back at school part-time for now. This started in late-Sept of this year after a respiratory-type illness (cough). She did get a z-pack somewhere at this point. For the longest time the docs thought she had Mono...but now they are sure it's NOT mono. She's missed most of her first year of high school. She's seen several docs, most lately a rheumatologist at LPCH. There aren't any neuro-psych. symptoms (so not PANDAS). Lyme test is pending (but we don't really think it's Lyme since there's not really a tick hx). I assume the Lyme test was NOT Igenex. The only other symptoms are a mild version of Reynaud's http://www.cedars-sinai.edu/Patients/Health-Conditions/Raynauds-Phenomenon.aspx and a hair loss pattern on the sides (which might also be seen with Lupus). The hair loss wasn't noticeable to me, but something the docs noticed. But, it doesn't sound like it's Lupus... She hasn't been tested for Mycoplasma b/c the doc said it would be neg (due to 1 5 day z-pack...ha ha ha ha), so that needs to be done. Should she see a Lyme doc (even though they don't think it's Lyme)? Any other ideas for tests? Herpes? And doc recommedations? Can you post or PM me with details? Sorry this isn't PANDAS related, but you guys are SO smart... Thanks! Eamom Edited February 4, 2012 by EAMom
philamom Posted February 4, 2012 Report Posted February 4, 2012 (edited) Here are some of the lupus related test we have ran, if she needs to explore that any further. Sed Rate C-Reactive Protein ANA DNA (DS) Antibody DNA AB (DS) Anna Choice by Quest Lupus Anticoagulant w/reflex Ribosomal P. Antibody SM and SM/RNP Antibodies Fructosamine Hepatic Function Panel CBC Comprehensive Meatobolic Panel Lipid Panel Renal Function Panel Iron and Total Iron Binding Capacity Ferritin edit to mention I have Raynauds, since my late teens. It's bad enough that I need to take a calcium channel blocker 8 months of the year. Edited February 4, 2012 by philamom
sf_mom Posted February 4, 2012 Report Posted February 4, 2012 Dr. H in Redwood City "LLMD" sees many chronic fatigue patients that don't have Lyme. He would be the best at ruling out Lyme and all the other infections/viruses that could be causing symptoms. My guess with CFS is multiple viruses are at play and perhaps a chronic infection of mycoplasma or chlamydia pneumoniae. MDL has a great viral panel if the want to run additional tests immediately. Dr. H also knows how to treat adrenal fatigue and lymphatic symptom if its playing a role in illness. I do not believe Dr. H sees patients at first visit any more. Typically, you can see one of his associates for preliminary testing and are then rotated into a visit with him once results are in. I think the wait time is about 2 to 3 weeks for first visit and there are Saturday appointments with Dr. G his associates. There are also a couple of good LLMDs/Integrative Dr. similar to Dr. H in Los Altos as well. You are welcome to PM me if you are not familiar with Dr. H's full name and his associates. Or would like other references.
philamom Posted February 4, 2012 Report Posted February 4, 2012 This is in a lyme endemic area but thought i would post anyhow. http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx
LNN Posted February 4, 2012 Report Posted February 4, 2012 My DD has struggled with EBV for the past several months. Has only been able to attend school half days, 504, school-paid tutor at house 1 hr/day. 7 weeks ago, she also developed a chronic dry cough and fatigue got noticeably worse. So maybe a combo of infections? Saw our integrative (LLMD but like Wendy's - someone who treats a broad spectrum) two days ago. Ran thru a range of options. We decided to try l-lysine: It is crucial for the proper absorption of calcium from the gastrointestinal tract. It also helps in conserving calcium. It facilitates the production of enzymes, hormones and antibodies and assists in the formation of muscle protein. Lysine aids in the synthesis of collagen, an important constituent of bones and connective tissues. Besides this, L-lysine benefits involve stimulating the production of creatinine, which is responsible for converting fatty acids into energy....Lysine is often used in treating herpes viral infections, especially those caused by herpes simplex virus. It has been observed that lysine is effective in accelerating the process of recovery and reducing the frequency of both cold sores and genital herpes.... Certain forms of lysine are also believed to have anti-inflammatory properties,...A deficiency of lysine can lead to the formation of kidney stones and other health problems such as nausea, dizziness, loss of appetite, fatigue, anemia and disorders associated with the reproductive system. A low-level of lysine can also lead to a low-level of the thyroid hormone, asthma and prolonged viral infections. As it is a vital amino acid, its deficiency can inhibit the normal rate of growth and development.http://www.buzzle.com/articles/benefits-and-side-effects-of-l-lysine.html and from wiki... L-Lysine is a necessary building block for all protein in the body. L-Lysine plays a major role in calcium absorption; building muscle protein; recovering from surgery or sports injuries; and the body's production of hormones, enzymes, and antibodies.... Lysine has a known anxiolytic action through its effects on serotonin receptors in the intestinal tract. One study on rats[32] showed that overstimulation of the 5-HT4 receptors in the gut are associated with anxiety-induced intestinal pathology. Lysine, acting as a serotonin antagonist and therefore reducing the overactivity of these receptors, reduced signs of anxiety and anxiety-induced diarrhea in the sample population. Another study showed that lysine deficiency leads to a pathological increase in serotonin in the amygdala, a brain structure that is involved in emotional regulation and the stress response.[33] Human studies have also shown negative correlations between reduced lysine intake and anxiety. Note that Wiki says l-lysine is a seratonin antagonist, but since this girl has no psych symptoms, should be ok. Not clear to me how it can be good for anxiety yet be a seratonin antagonist. I'm missing something. Anyway, we started DD on it on Thursday night. She is noticeably better these past two days. I was coming down with a virus and other naturopathic remedies weren't cutting it. I started the l-lysine and also started to feel better. The doctor said if it was going to work, it would work quickly. It may not be the answer for your friend, but for $0.10/pill, and no real side effects, especially short term, it could be a quick experiment.
3boysmom Posted February 4, 2012 Report Posted February 4, 2012 Alopesia is an autoimmune issue of hair loss... Just an FYI.
mkur Posted February 4, 2012 Report Posted February 4, 2012 Other viruses to consider http://en.wikipedia.org/wiki/Alternative_names_for_chronic_fatigue_syndrome "Post-viral fatigue syndrome The World Health Organization's ICD-10 classification system refers to CFS as post-viral fatigue syndrome (PVFS), based on the hypothesis that viruses can trigger chronic fatigue illnesses. After considerable research in this area, certain viruses have been implicated "as one of many possible precipitating and eventually perpetuating factors."[27] Studies of chronic fatigue syndrome have reported increased rates of infection in subsets of patients with, among others, HHV-6,[28][29] HHV-7,[30] CMV, Epstein Barr,[31] enteroviruses,[32] and two retroviruses: an unnamed HTLV-II-like retrovirus,[33] and XMRV.[34] The "Oxford 1991" diagnostic criteria for CFS refer to a subtype of CFS called post-infectious fatigue syndrome (PIFS), which is broader than PVFS since it can include any infection, not just viral infections.[35]"
mkur Posted February 4, 2012 Report Posted February 4, 2012 hair loss - my son would pull his hair out at night while sleeping a/o going to sleep
mkur Posted February 4, 2012 Report Posted February 4, 2012 One more then I'm done. If they find the answer please post because my son was a long sleeper - 12 hours - and I have looked and looked for an answer. http://chronicfatigue.about.com/od/cfsglossary/g/hpa_axis.htm "The hypothalamic-pituitary-adrenal axis is a complex set of interactions between the hypothalamus (a part of the brain), the pituitary gland (also part of the brain) and the adrenal or suprarenal glands (at the top of each kidney.) The HPA axis helps regulate things such as your temperature, digestion, immune system, mood, sexuality and energy usage. It's also a major part of the system that controls your reaction to stress, trauma and injury. Research links fibromyalgia and chronic fatigue syndrome with abnormalities in genes involved in the HPA axis. (Primarily the hypothalamus in fibromyalgia and primarily the adrenals in chronic fatigue syndrome.) The HPA axis also is involved in anxiety disorder, bipolar disorder, post-traumatic stress disorder, clinical depression, burnout and irritable bowel syndrome. Also Known As: hypothalamic-pituitary-adrenal axis"
EAMom Posted February 4, 2012 Author Report Posted February 4, 2012 (edited) My DD has struggled with EBV for the past several months. Has only been able to attend school half days, 504, school-paid tutor at house 1 hr/day. 7 weeks ago, she also developed a chronic dry cough and fatigue got noticeably worse. So maybe a combo of infections? Saw our integrative (LLMD but like Wendy's - someone who treats a broad spectrum) two days ago. Ran thru a range of options. We decided to try l-lysine: It is crucial for the proper absorption of calcium from the gastrointestinal tract. It also helps in conserving calcium. It facilitates the production of enzymes, hormones and antibodies and assists in the formation of muscle protein. Lysine aids in the synthesis of collagen, an important constituent of bones and connective tissues. Besides this, L-lysine benefits involve stimulating the production of creatinine, which is responsible for converting fatty acids into energy....Lysine is often used in treating herpes viral infections, especially those caused by herpes simplex virus. It has been observed that lysine is effective in accelerating the process of recovery and reducing the frequency of both cold sores and genital herpes.... Certain forms of lysine are also believed to have anti-inflammatory properties,...A deficiency of lysine can lead to the formation of kidney stones and other health problems such as nausea, dizziness, loss of appetite, fatigue, anemia and disorders associated with the reproductive system. A low-level of lysine can also lead to a low-level of the thyroid hormone, asthma and prolonged viral infections. As it is a vital amino acid, its deficiency can inhibit the normal rate of growth and development.http://www.buzzle.com/articles/benefits-and-side-effects-of-l-lysine.html and from wiki... L-Lysine is a necessary building block for all protein in the body. L-Lysine plays a major role in calcium absorption; building muscle protein; recovering from surgery or sports injuries; and the body's production of hormones, enzymes, and antibodies.... Lysine has a known anxiolytic action through its effects on serotonin receptors in the intestinal tract. One study on rats[32] showed that overstimulation of the 5-HT4 receptors in the gut are associated with anxiety-induced intestinal pathology. Lysine, acting as a serotonin antagonist and therefore reducing the overactivity of these receptors, reduced signs of anxiety and anxiety-induced diarrhea in the sample population. Another study showed that lysine deficiency leads to a pathological increase in serotonin in the amygdala, a brain structure that is involved in emotional regulation and the stress response.[33] Human studies have also shown negative correlations between reduced lysine intake and anxiety. Note that Wiki says l-lysine is a seratonin antagonist, but since this girl has no psych symptoms, should be ok. Not clear to me how it can be good for anxiety yet be a seratonin antagonist. I'm missing something. Anyway, we started DD on it on Thursday night. She is noticeably better these past two days. I was coming down with a virus and other naturopathic remedies weren't cutting it. I started the l-lysine and also started to feel better. The doctor said if it was going to work, it would work quickly. It may not be the answer for your friend, but for $0.10/pill, and no real side effects, especially short term, it could be a quick experiment. Well, I guess I should clarify...they did see a psychologist. THere is some mild depression/anxiety but they felt it was secondary to her fatigue (and not vice versa). If you were to meet her, she would seem entirely normal, so definitely not neuropsych. in the manner of PANDAS. She's not on anything for the mild symtpoms. Oh, she's also having problems with her menstrual cycle (cycling more often). The docs think is MAY be unrelated (since this might happen if the first 2 years of having a period?). But, they did put her on BC to regulate that and check iron regularly. She's also going to have a sleep study soon. She also has a hx of nut allergies since toddler-hood (may be entirely unrelated.) I have heard of Lysine for herpes... Edited February 4, 2012 by EAMom
EAMom Posted February 4, 2012 Author Report Posted February 4, 2012 Here are some of the lupus related test we have ran, if she needs to explore that any further. Sed Rate C-Reactive Protein ANA DNA (DS) Antibody DNA AB (DS) Anna Choice by Quest Lupus Anticoagulant w/reflex Ribosomal P. Antibody SM and SM/RNP Antibodies Fructosamine Hepatic Function Panel CBC Comprehensive Meatobolic Panel Lipid Panel Renal Function Panel Iron and Total Iron Binding Capacity Ferritin edit to mention I have Raynauds, since my late teens. It's bad enough that I need to take a calcium channel blocker 8 months of the year. THanks! I know they just ran more blood work at the rheumatologist...not back yet.
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