18 years old, NYC, CFS all life, in need of suggestions

[kangaSue]

The blood is typically dark red, and it's most visible as streaks running along the surface firmer, rock-like stool. I get bowel urgency almost every morning after the first or second time I eat, and it tends to be soft and sometimes weirdly colored. If more than two days pass, then the stool will be firm and solid but still ejected explosively. This near-daily diarrhea began a few years ago along with the chronic sinusitis after a lifetime of being constipated. I'm starting to miss constipation.

I know that blood tests for Crohn's or IBD are unreliable, but my CBC c-reactive protein and erythrocyte sedimentation rate were all normal. Without colonoscopy, I may not be able to get that completely ruled out.

I'm starting to miss constipation too. I seem to have a very similar situation as you with diarrhea nowadays also from a few years ago but I don't have bleeding issues with it so can't help more on that front.

Even with having a chronically inflamed large bowel, my blood tests don't show up any sign of inflammation and sed rate is perfectly normal so it's not a good measure of disease state.

Enterovirus has cropped up again as a cause of gastroparesis in both CFS and idiopathic GI dysmotility.
http://forums.phoenixrising.me/inde...-etiology-of-gastroparesis.45508/#post-741702

 

[kangaSue]

I originally tried Zantac for MCAS and it did nothing for me. But the last 2-3 wks I have been trying Pepcid (as an H2 blocker) and it has been very helpful. I do not have any gastroparesis though and if anything, with my MCAS (prior to the Pepcid) I was often getting diarrhea or having to go to bathroom 4-5x a day and now it's more normal and also less nausea with food.

Interesting result. It's not well known but H2 blockers have a secondary action as anti-inflammatory agents and PPI's are more potent again.

Funny how we react differently to things, I don't tolerate Pepcid but Zantac is fine.

 

[Gingergrrl]

Interesting result. It's not well known but H2 blockers have a secondary action as anti-inflammatory agents and PPI's are more potent again. Funny how we react differently to things, I don't tolerate Pepcid but Zantac is fine.

That is interesting and I have had a pretty solid improvement in many symptoms since starting the Pepcid 2x/day. I tolerated the Zantac all of last summer with no side effects but I also did not notice any benefit from it. Am not really sure why they are so different unless the Pepcid has more of an anti-inflammatory effect like you said? Pepcid is going to be one of my pre-meds for my first IVIG tomorrow (plus others).

 

[Dmitri]

Interesting result. It's not well known but H2 blockers have a secondary action as anti-inflammatory agents and PPI's are more potent again.

Funny how we react differently to things, I don't tolerate Pepcid but Zantac is fine.

H2 blockers seem to be commonly viewed as "just an acid reducer" but H2 receptors are also associated with the central nervous system, blood vessels, neutrophils, etc. I can't find much info on using H2 blockers to treat those areas. Are there more benefits that you can note besides less acid secretion that can be attributed to them?

 

[Gingergrrl]

H2 blockers seem to be commonly viewed as "just an acid reducer" but H2 receptors are also associated with the central nervous system, blood vessels, neutrophils, etc. I can't find much info on using H2 blockers to treat those areas. Are there more benefits that you can note besides less acid secretion that can be attributed to them?

For me the H2 blocker is not used to reduce acid but to reduce mast cell degranulation when I eat food (and in general). For the last year I have been using H1 blockers and mast cell stabilizers without any H2 blocker. Then a good friend of mine with MCAS told me that if I am using the rescue med too much (was temporarily in an unhealthy living situation with mold and poor air quality before we went to hotel and then moved last week) that it was far better to add back in an H2 blocker.

I knew the Zantac had not helped me so I decided to try Pepcid and was shocked that it worked. Since doing that, I have only had to take my rescue med twice (total) in the last month. Somehow the combo of the H1 and H2 blocker plus the mast cell stabilizer (Ketotefin) is working really well for me at present. No idea if it will continue. I'd love to hear more about the other benefits you mentioned (to the CNS, blood vessels, etc) if anyone knows!

 

[kangaSue]

H2 receptors are also associated with the central nervous system, blood vessels, neutrophils, etc

I didn't know that, I will have to some more digging to see what I can find. I only found about the anti-inflammatory effect when I stopped taking PPI's only to wind up in ER with severe pain which partially resolved starting an H2 blocker but only fully resolved with going back to the PPI.

 

[kangaSue]

@Dmitri, Have you had testing for Voltage-gated Calcium Channel antibodies (VGCC Ab)? Both Gingergrrl and I have N-type VGCC Ab although mine is considered to be in normal range. These are showing up in some with CFS (of the few that get tested) and do show up regularly in some with muscle weakness, GI dysfunction and other autonomic dysfunction.

You mentioned sensitivity to cold too which can be the case in sudomotor dysfunction where VGCC Ab are also sometimes found in the mix and both Gingergrrl and I have recorded sudomotor dysfunction in QSART and/or TST autonomic function tests.

 

[Dmitri]

@Dmitri, Have you had testing for Voltage-gated Calcium Channel antibodies (VGCC Ab)? Both Gingergrrl and I have N-type VGCC Ab although mine is considered to be in normal range. These are showing up in some with CFS (of the few that get tested) and do show up regularly in some with muscle weakness, GI dysfunction and other autonomic dysfunction.

You mentioned sensitivity to cold too which can be the case in sudomotor dysfunction where VGCC Ab are also sometimes found in the mix and both Gingergrrl and I have recorded sudomotor dysfunction in QSART and/or TST autonomic function tests.

I haven't had VGCC Ab testing, but I will request it. Besides that, are there other tests that you think could be helpful? Other than the positive ANA which turned out to be speckled and 1:160, I had the following tests done, and all were within normal range.

T4 FREE
TSH
NUCLEAR ANTIBODY (ANA) IFA
SEDIMENTATION RATE, AUTOMATED
C-REACTIVE PROTEIN
CYCLIC CITRUL PEPTIDE AB, IGG
SJOGRENS SYNDROME-A EXTRACTABLE NUCLEAR AB
SJOGRENS SYNDROME-B EXTRACTABLE NUCLEAR AB
LYME WESTERN BLOT/CSF
B. BURGDORFI ANTIBODIES BY WB
C3 COMPLEMENT
C4 COMPLEMENT
RHEUMATOID FACTOR
RIBOSOMAL P PROTEIN ANTIBODY
ANTI-SM AB HJD
ANTI SCLERODERMA
HLA-B27 ANTIGEN
HISTONE AB HJD
ANTI NEUTROPHIL CYTOPLASMIC ANTIBODY
RNA POLYMERASE III IGG AB
CELIAC DISEASE COMPREHENSIVE REFLEX PANEL

I also had testing for tryptase, chromogranin A, gastrin, serum serotonin, and vasoactive intestinal peptide. All of these were normal. I expected serotonin to be off-range, because I have deep levels of depression, anxiety, irritability and a sense of impending doom. I don't bring these symptoms up to physicians because I wish to avoid being preyed on by psychobabblers - it would add fuel to the "it's in your head" or "hysteria" response which I am tired of hearing.

 

[taniaaust1]

I'm starting to miss constipation too.

dont wish yourself with that, I ended up with the IBS-C and then a drug which had side effect of making this slightly worst, with a prolapsed bowel. Quite painful.

 

[kangaSue]

@Dmitri, If money were no object, I would want every test on the Mayo PAVAL panel done, that covers a lot of known antibodies and different conditions.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83380

You haven't been tested for any acetylcholine receptor antibodies, they feature widely in issues of muscle weakness. In fact something like Lambert-Eatons Myasthenic Syndrome has similarities to symptoms of CFS and something that Gingergrrl was having ruled out.

The Mayo MGLES panel covers both the VGCC Ab's as well as AChR receptor Ab's.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83369

The other big offender among neuronal antibodies is Voltage-gated Potassium Channel Ab's but I haven't come across it in reference to CFS other than a couple of chronic cardiac cases with CFS co-morbidity.