Strange Symptoms - No Answers - PLEASE HELP

[shelin]

Did you have the AChR Binding Antibodies? I tested positive for those at a level of 4.7 (normal being under .50)

Yes, that all came back fine. No answers there. :/

 

[shelin]

Just wondering if there was any update? @shelin

Thanks for asking. Still no answers... I did advanced testing for Lyme which came back fine, inflammation tests are still normal, as is my metabolic panel, etc. I have a very high recent Ebstein Barr reading but it looks like there is no current infection. Mold tests came back fine as well. We are looking into the possibility of Pernicious anemia as my B12 and folate has always come back fluctuating pretty heavily. We are waiting on the results of an blood MMA test and will also re-do the tests while fasting. The symptoms have stayed about the same and do not appear to have gotten worse. I feel like I have been more forgetful recently but I also have not been sleeping well so I'm hoping that is the cause. Lastly, I am meeting with the alternative care provider again next week to review the mold/lyme tests though I doubt he will have much to say. At this point, doctors are starting to mention CFS... Can anyone think of anything else? Thanks so much for the continued support.

 

[AngelM]

Did you have the AChR Binding Antibodies? I tested positive for those at a level of 4.7 (normal being under .50)

Yes, I did. Although I am not sure what the reading was. (I can find it, though) My understanding was that the AChR binding test is one of three blood tests used to diagnose Myasthenia Gravis, and that the other two were normal. I was also told that it not unusual to see AChR elevated in people over 50 years old. Regardless of the fact that the neurologist told me “I was wasting her time,” my symptoms have continued to worsen. I’ve decided to see another neurologist.

 

[crypt0cu1t]

Yes, I did. Although I am not sure what the reading was. (I can find it, though) My understanding was that the AChR binding test is one of three blood tests used to diagnose Myasthenia Gravis, and that the other two were normal. I was also told that it not unusual to see AChR elevated in people over 50 years old. Regardless of the fact that the neurologist told me “I was wasting her time,” my symptoms have continued to worsen. I’ve decided to see another neurologist.

Jesus, I'm sorry you had to deal with that. I have high AChR Binding antibodies, high Salivary Protein 1 abs, high ESR, high CRP and a few other signs of ibflammation and Im in the process of getting IVIG

 

[shelin]

Do any of my symptoms sound like it could turn out being CFS? As I said, the doctors have started mentioning it or that it could be a "virus running its course." What do you all think?

 

[Learner1]

The hallmark symptom of ME/CFS is post exertional.malaise, increases fatigue and sickness symptoms after mental or physical exertion.

Which EBV tests and values did you have done that shows a past infection? I had a sneaky case of chronic EBV that evaded several tests until the right ones were done. It is also known for causing autoimmune problems. Attached is a list of antibody tests folks around here have collected - you may wish to familiarize yourself with them and see if any fit your symptoms. Have you also been checked for HHV6 and 7, cytomegalovirus, and other herpes family viruses?

What did the MMA test say? Did they do RBC folate or measure other vitamins, minerals, or amino acids?

Which tests were done for MCAS? Hopefully more than just histamine and tryptase, as they aren't always elevated. There are several other tests, like Chromagranin A and prostaglandin D2.

 

[shelin]

Thanks for getting back to me. For MCAS, they did all of the tests you've outlined except Chromagrainin. All of which have come back normal. Further, I have not really had any rashes and have definitely not have anaphalayxsis. I feel that is is pretty safe to rule that one out.

A full panel has been done for basically everything that you have asked about. Below are the only abnormal results that have come back... some of them are borderline and likely not a cause for concern. As you can see, the EBV values are incredibly high.

Please let me know what you think. Thanks so much for the help!

HERPESVIRUS 6 IGG 1:80 H TXC
HERPESVIRUS 6 IGM <1:20 TXC

ZINC, RBC 17.1 H 9.0-14.7 mg/L
HOMOCYSTEINE 11.8 H <11.4 umol/L NL2

MYCOPLASMA PNEUMONIAE ANTIBODY (IGG) 1.43 H <=0.90 AMD

EBV NUCLEAR AG (EBNA) AB (IGG) 322.00 H U/mL NL2

EBV VIRAL CAPSID AG (VCA) AB (IGG) 316.00 H U/mL NL2

EBV VIRAL CAPSID AG (VCA) AB (IGM) 81.00 H U/mL NL2

VASCULAR ENDOTHELIAL GROWTH FACTOR (VEGF) <31 L 31-86 pg/mL EZ

 

[Learner1]

Your EBV numbers are high. The attached article says that combination of results is a late primary infection or reactivation. You could also do a PCR test. EBV is notorious for triggering autoimmunity.

Drugs like valacyclovir, valganciclovir, or famvir might help.

I had no anaphylaxis or many allergy symptoms, but did have a list of weird symptoms like urinary urgency, weird headaches, nausea, and occasional hives, with a high Chromagranin A, and was diagnosed with MCAS, for which the correct meds helped.

My apologies, here's the antibody list.

 

[Learner1]

ZINC, RBC 17.1 H 9.0-14.7 mg/L
HOMOCYSTEINE 11.8 H <11.4 umol/L NL2

Have you had your copper level measured? Zinc and copper need to be in the right balance in your body. Anxiety can be a symptom if they're out of balance.

Homocysteine is a little high, indicating an imbalance in methylating nutrients, which could produce symptoms. If RBC folate and MMA are fine, looking at levels of B2 and B6 might be useful. Optimal homcysteine is around 7.

 

[shelin]

Have you had your copper level measured? Zinc and copper need to be in the right balance in your body. Anxiety can be a symptom if they're out of balance.

Homocysteine is a little high, indicating an imbalance in methylating nutrients, which could produce symptoms. If RBC folate and MMA are fine, looking at levels of B2 and B6 might be useful. Optimal homcysteine is around 7.

Thanks for getting back to me on this. I just don't seem to have the most common signs of MCAS, I really think I can rule that one at at this point, especially with the testing that has been done. Either way, I have an appointment to meet with a MCAS specialist (in a year) but he does not think I have anything that would suggest it.

As for the Copper and Zinc, both has been measured and only Zinc came back abnormal as it was high.

Folate has been coming back very high and MMA tests are pending, one fasting, one not fasting. I am also waiting on a fasting folate, B12, and Homocysteine test. Today's basic metaboloic panel came back normal.

 

[shelin]

Does anyone have any further insight into the above? Thanks in advance!

 

[raden]

Have you seen a gastroenterologist yet? Your heartburn, fatigue after eating, fullness or tightness in chest or stomach, etc.. could be a problem with your gastric motility being either to fast, dumping syndrome, or to slow, gastroparesis. So a google search on both of those and check out the symptoms as they are the same as you describe. I have had this problem and it started out with extreme heartburn like nothing I had ever experienced which turned into GERD and esophageal damage and erosion due to acid which can turn into Barrett's Esophagus, which is precancerous. Gastroparesis is common in me/cfs but I had extremely rapid gastric motility or stomach dumping causing me to get sick and vomit not long after I had eaten. Other symptoms include, fatigue after eating, fullness or bloat, tightness in stomach, bowel problems and many more. Check it out.

 

[Hip]

Over the last four months, I have been experiencing a wide range of strange and disturbing symptoms.

Perhaps you might like to check these two websites, and see if you can relate to the symptoms listed there:

New HIV-Like Virus in China. Duplicate here: New HIV-Like Virus in China

Chronic Sore Throat / Mood Virus

 

[Hip]

Heavy Anxiety/Doom Feelings - These seem to not really be brought on by anything in specific.

That might be generalized anxiety disorder. I developed GAD after contracting the virus detailed on my chronic sore throat / mood virus website above. I found a very effective treatment: see this thread:

Completely eliminated my severe anxiety symptoms with three supplements!