• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
Right now I am only a burden to my mother, I cannot work to provide funds or attend college. If I am to survive, I need an income. This is where I need suggestions and legal advice, I imagine the struggle to receive any form of welfare will be very difficult, and I honestly have no idea where to start.

If you are looking to apply for SSI disability, I have started another thread here on that topic, or you can feel free to pm me. yes, I can give you suggestions. If you have been diagnosed by a specialist that is a great start.

I believe new york also has some form of temporary assistance that will pay a small amount. if you show you are disabled you can get out of the work requirements: https://otda.ny.gov/programs/temporary-assistance/

Are you currently on medicaid and food stamps?

Also, is your mom or someone else physically helping care for you (assisting with dressing, bathing, eating, etc)? If yes, it may be possible to get her or someone else paid for their time caring for you. let me know if you want to know more about this.
 
Last edited:

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
I appreciate all the responses, they mean a lot to me.
I was the only one who was diagnosed by Susan Levine.
Vli, I've been wanting to see someone like this for a long time and will make sure to let you know when the opportunity comes. Susan Levine is the doctor, yes. Her research seems to focus on links between viral infections and CFS.

Are you still seeing doctor levine? I saw the medical records she prepared for someone else applying for disability and they were excellent.

Most doctors have no idea at all how to keep proper medical records for disability cases. She is one of the very few I have seen who actually understands this.

if this is your doctor that would be a very big advantage to you.
 

Dmitri

Senior Member
Messages
219
Location
NYC
I stopped taking the ketotifen because it was hurting my stomach too much. I still consider it a partial success considering I didn't get an immune response to it, but my stomach freaks out from all stimuli, and naturally it wouldn't do well with pungent chemicals. Besides the abdominal burning, the pulsating pain on the roof of my mouth worsened during the days I took ketotifen, and my colon vibrated seconds after I swallowed it. Maybe I should just avoid the oral route altogether...

I don't know if the positive ANA of 1:160 and speckled pattern mean that I should be looking for autoimmune causes, but I was assured that I don't have an autoimmune disorder after testing negative for the recognized ones. And if my symptoms are mainly mediated by mast cells, there's the chicken-egg question of whether this began with an immune or a neurological malfunction. All I know is that it began with an adverse reaction to antibiotics.

If you are looking to apply for SSI disability, I have started another thread here on that topic, or you can feel free to pm me. yes, I can give you suggestions. If you have been diagnosed by a specialist that is a great start.

I believe new york also has some form of temporary assistance that will pay a small amount. if you show you are disabled you can get out of the work requirements: https://otda.ny.gov/programs/temporary-assistance/

Are you currently on medicaid and food stamps?

Also, is your mom or someone else physically helping care for you (assisting with dressing, bathing, eating, etc)? If yes, it may be possible to get her or someone else paid for their time caring for you. let me know if you want to know more about this.

I do receive Medicaid and food stamps, but the last time I attempted to apply for assistance, the obstacle was not ever being employed.

In regards to disability; Dr. Levine isn't a regular doctor for me as I've only seen her one time in 2012 in order to get a diagnosis. Since she didn't accept Medicaid, I had to pay a large out of pocket fee ($350 thereabouts). My mom, who I currently have poor relations with, is as disabled as me, and she has been struggling to get disability for years. The last time she got denied, the reason given was along the lines of "oh you can stand for three seconds and lift cups, therefore you can work". Both she and I currently survive on credit cards, which is not very sustainable.

I have read your thread, and I am grateful for all the insight it provided. I don't know whether or not I'll continue pursuing disability, because I've long arrived at a point where I'm ready to take the easy way out if some miraculous intervention doesn't occur (being significant enough to make me not require disability anymore in the first place is a perquisite). This is why I am willing to take the risk of drug trials.
 

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
I understand. Please feel free to get in touch with me or post here if you do decide to apply or if you have any questions for your mom's application. It is great that you have medicaid.

I don't know what type of assistance you were applying for, if it was SSI, you do not need any work history, you can apply at any time.

If it was state cash assistance, you need to tell them that you are disabled and unable to work. They will probably give you a form for a doctor to sign. Then you can get the assistance.

You may have to be persistent or ask more than one person, sometimes people who work at agencies don't know all the rules.

what do you mean by the easy way out?
 

Dmitri

Senior Member
Messages
219
Location
NYC
I understand. Please feel fre e to get in touch with me or post here if you do decide to apply or if you have any questions for your mom's application. It is great that you have medicaid.

I don't know what type of assistance you were applying for, if it was SSI, you do not need any work history, you can apply at any time.

If it was state cash assistance, you need to tell them that you are disabled and unable to work. They will probably give you a form for a doctor to sign. Then you can get the assistance.

You may have to be persistent or ask more than one person, sometimes people who work at agencies don't know all the rules.

It was state cash assistance who denied me. After that, I didn't continue looking into other options because of my general lack of ability at the time, as well as being discouraged after witnessing others taking years to obtain SSI with mixed success. Sometimes, one has to be "evaluated" by an SSA-issued doctor for whatever reason.

what do you mean by the easy way out?

By that I mean death. I hope it doesn't have to come to that, it would mean I endured everything this far for no reason. But if there's no way to control the pain, it's the only way out. I've been wanting it for years and think about it every day, all the time I allowed myself to suffer.
 

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
It was state cash assistance who denied me. After that, I didn't continue looking into other options because of my general lack of ability at the time, as well as being discouraged after witnessing others taking years to obtain SSI with mixed success. Sometimes, one has to be "evaluated" by an SSA-issued doctor for whatever reason.

By that I mean death. I hope it doesn't have to come to that, it would mean I endured everything this far for no reason. But if there's no way to control the pain, it's the only way out. I've been wanting it for years and think about it every day, all the time I allowed myself to suffer.

Please do try the state cash assistance again. Tell them you are disabled and unable to work. You can get out of the work requirements if your doctor signs a form for them.

I am very sorry to hear the struggles you are going through and I know how hard it can be. I am sure that you are very loved and needed in this world.

If you are feeling this way, please try to reach out for help.

"No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7."

I am sorry that I do not know what to say here. I am not trained in this. It is very serious and I would be afraid to write the wrong thing. I see you are going through something very terrible. I hope you can get help and support you need.
 
Last edited:

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
By that I mean death. I hope it doesn't have to come to that, it would mean I endured everything this far for no reason. But if there's no way to control the pain, it's the only way out.
If you are feeling this way, please try to reach out for help.
Yes, please Dmitri, if you are not able to seek the kind of help you need, by yourself, reach out to someone like a crisis center who can help you find options you may not know about. I am so sorry. I feel for you. Keep in touch on this thread and let us know how you are doing.
 

Horizon

Senior Member
Messages
239
Dmitri I'm really sorry you're struggling. I can't go through the whole thread so I'm not sure about the full story but im also in NY. Have you gone to the NY social services eligibility site to see what government benefits you can get?

There are free and low cost clinics, nobody has to suffer physically or emotionally. You never know what's around the corner and your current reality may very well be a nightmare that will pass with good times ahead. I also agree that if you need to, call a crisis line. Definitely see what's out there. If you need the link I'll be happy to dig it up.
 

Dmitri

Senior Member
Messages
219
Location
NYC
Please do try the state cash assistance again. Tell them you are disabled and unable to work. You can get out of the work requirements if your doctor signs a form for them.

I am very sorry to hear the struggles you are going through and I know how hard it can be. I am sure that you are very loved and needed in this world.

If you are feeling this way, please try to reach out for help.

"No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7."

I am sorry that I do not know what to say here. I am not trained in this. It is very serious and I would be afraid to write the wrong thing. I see you are going through something very terrible. I hope you can get help and support you need.

I have no immediate plans to end my life, it was just mentioned as a means to end my symptoms, and I hope it won't be the only viable option. I apologize for causing alarm, and I understand why you had to respond with caution. This has crossed my mind every day for many years and it's hard not to think about when the days consist of severe headaches, diarrhea with blood, the sensation of boiling water in my stomach and around my body, reacting to everything and struggle to do basic functions like swallowing and breathing. A counselor's words are inconsequential to my pain. I wouldn't want to attract unnecessary and potentially damaging attention to myself either, that would add more difficulty to my life.

A user here who went by the name of vli killed herself last year. This affected me negatively, firstly because I was deprived of a valuable person in my life and secondly because it made my outlook on everything even more grim. Another reason I withheld, in addition to not wanting to squander the years of suffering I already endured, was that I also wanted to avoid leaving a negative mark on my friends' lives, including the individuals I met on this forum. Note that I am not judging vli in any way and fully respect her decision, as she had strong reasons for suicide. And if it comes down to me being left with no choice, I hope others will understand that it will be better for me to be at peace.
 

Gingergrrl

Senior Member
Messages
16,171
@Dmitri I just responded to you in another thread (re: ANA titers) and then saw this one. I have no judgement re: suicide and was also really affected by the death you mentioned last year.

I don't want you (or me) or any of us to keep suffering but somehow feel that we need to stick it out a little longer as the new research is so promising.

I have no idea if this could help but my SSDI attorney was fantastic and I was approved on the first go round and am happy to send you the info via PM. They serve clients across the US so don't ever have to see them in person and all work done via phone.

You are wise beyond your years and very eloquent and glad you are posting so we can all share ideas how to fight our illnesses together.
 

Gingergrrl

Senior Member
Messages
16,171
Just re-read your last post re: diarrhea with blood and was wondering, are your doctors not taking this seriously or testing it further? Am so sorry.

ETA: also forgot to ask you re: Ketotefin, are you getting it compounded without dyes or fillers b/c that can make a real difference if your GI issues are MCAS related?
 

Dmitri

Senior Member
Messages
219
Location
NYC
Just re-read your last post re: diarrhea with blood and was wondering, are your doctors not taking this seriously or testing it further? Am so sorry.


Blood in stool is something that has been occurring for such a long time that I oftentimes forget to bring it up to physicians, but it did get particular attention when I did. My GI doctor suggested endoscopy, but I am afraid of reacting to the sedative and it would be impractical for me to fast in preparation because of frequent hunger and problems with liquid foods. Barium x-ray was suggested as an alternative, but I am not sure how much utility it would provide and whether the risk is worth it.

ETA: also forgot to ask you re: Ketotefin, are you getting it compounded without dyes or fillers b/c that can make a real difference if your GI issues are MCAS related?

I had to play it as safe as possible, so I went through the trouble of getting ketotifen compounded with no inactive ingredients, and it still makes my abdomen burn. Any chemical I try appears to cause more inflammation.
 

Gingergrrl

Senior Member
Messages
16,171
Blood in stool is something that has been occurring for such a long time that I oftentimes forget to bring it up to physicians, but it did get particular attention when I did. My GI doctor suggested endoscopy, but I am afraid of reacting to the sedative and it would be impractical for me to fast in preparation because of frequent hunger and problems with liquid foods. Barium x-ray was suggested as an alternative, but I am not sure how much utility it would provide and whether the risk is worth it.

@Dmitri Do they have any idea where in the GI track the blood is coming from? Have you reacted badly to sedatives before? I am wondering if the test would be worth it of if too high or a risk if you have possible MCAS/severe allergic reactions?

I had to play it as safe as possible, so I went through the trouble of getting ketotifen compounded with no inactive ingredients, and it still makes my abdomen burn. Any chemical I try appears to cause more inflammation.

Am so sorry and maybe the Ketotefin and all meds are reactive b/c of the GI issue itself? I was hoping it might be a food dye or filler issue so you could get a purer form but it sounds like you already did that and just do not tolerate it. Have you been tested for MCAS? (apologies that I was not able to re-read the whole thread at present but hope to later.)

Also, I think you mentioned in one of the posts that your issues started with an antibiotic and was curious which one? I hope your last few days have been better and you have had some relief of your worst symptoms.
 

Dmitri

Senior Member
Messages
219
Location
NYC
@Dmitri Do they have any idea where in the GI track the blood is coming from? Have you reacted badly to sedatives before? I am wondering if the test would be worth it of if too high or a risk if you have possible MCAS/severe allergic reactions?

The blood comes in streaks and looks relatively fresh, so I would assume the bleeding originates from the intestine, where I frequently have tearing pains. This was at its worse one time in June 2010 when I was hospitalized after eating rice that was too sticky. After the next meal 30 minutes later, I started having intervals of violent spasms and cramps in my lower abdomen from which I dropped on the floor. These attacks were then followed by bowel movements. before finally stopping. This still happens several times per year. I can tolerate local anesthetics ending in -caine but general anesthesia sounds riskier.

Am so sorry and maybe the Ketotefin and all meds are reactive b/c of the GI issue itself? I was hoping it might be a food dye or filler issue so you could get a purer form but it sounds like you already did that and just do not tolerate it. Have you been tested for MCAS? (apologies that I was not able to re-read the whole thread at present but hope to later.)

Also, I think you mentioned in one of the posts that your issues started with an antibiotic and was curious which one? I hope your last few days have been better and you have had some relief of your worst symptoms.

I was disappointed from inability to tolerate ketotifen (and now zyrtec too), it just looks like I am sensitive to strong chemicals in general. When it touches my tongue, it causes a stinging pain, I can only imagine what happened further down. I have been trying to get tested for MCAS since it just seems so probable, but so far, my physicians were only able to test for tryptase and chromogranin A, both of which were in the normal range.

The first antibiotic reaction was at age 1, levomycetin taken shortly after diacarb. The second antibiotic was isoniazid at age 3, when I was misdiagnosed with tuberculosis. I can't remember the first incident, but I remember how horrific the reaction to isoniazid was - whole body became red, vomiting, fever, sleepless nights, trouble breathing, pain, etc. I don't know which one affected me more adversely, perhaps I would be functional were it not for the isoniazid. Oftentimes, I wished it had just killed me instead of leaving me with an injury worse than death. Another dangerous reaction I had was to prednisone some years after that. That's yet another reason why I suspect MCAS so strongly, because patients were documented to have an inability to tolerate antibiotics and corticosteroids.

I had severe abdominal burning and IBS the past few days, but I managed to improve the sinusitis pain temporarily with strenuous exercise, which tends to help on lucky days with certain problems (does nothing directly for GI symptoms, though the sinusitis feels like it radiates from my abdomen, and it especially gets out of control if I eat a trigger food). Speaking of which, what does a positive response to exercise mean from a MCAS context? I know that many report the precise opposite - flares after exercise.

The sinusitis can also be slightly numbed if I press down my abdomen strongly on something solid to interfere with blood flow for a prolonged period of time (dangerous, but the pain is too extreme and I have no choice). Along with the sinus headaches, I still have disabling headaches on the sides of my head that I think are radiating from my chronically stiff trapezius/neck region. This was the pain I feared the most until the chronic sinusitis kicked in together with IBS-D several years ago.
 

Gingergrrl

Senior Member
Messages
16,171
@Dmitri I am tagging @Kanga Sue (to read the post directly above this one #94) b/c she is an expert in GI issues. I honestly do not know if you have MCAS although it definitely can cause major GI issues in many people. Can they test you for histamine and prostaglandins (in blood and urine)? I have severe MCAS but my tryptase and chromogranin were normal. My histamine test at end of 2014 was 4x the normal limit but now with meds, it is much closer to normal.

My non-medical opinion is that if you can tolerate local anesthesia and they have a way to scope the area to find the source of the bleeding, it would be worth it but definitely curious to hear what kanga sue thinks. My MCAS can cause me nausea and diarrhea at times but it is predominantly more traditional allergic symptoms like throat narrowing and swelling, massive phlegm, head & ears stuffed up, facial flushing, angiodema, tachycardia, and in severe episodes I get confused and start shaking, teeth chattering, etc.

Do H2 blockers help at all (like Zantac or Pepcid?) Sorry if you already answered this part and I missed it. I do not tolerate many meds but do great with both Zyrtec and Ketotefin (but I had a horrible reaction to Benadryl.) It's all so hit and miss. I also do well with Cortef which tamps down my allergic reactions to food but I do not tolerate antibiotics at all and have had horrific reactions to them. I had asked b/c was curious if you had taken a fluoroquinolone antibiotic before this all started like I did.

You asked about exercise and in many with MCAS, exercise itself can induce anaphylaxis. I have other breathing problems and muscle weakness and have not attempted anything even close to exercise since prior to developing MCAS so am not sure how I would do with it (in theory) if I were better. I use a motorized wheelchair now even in the house and transferring is the extent of my exercise at present.

I wish I had better feedback to give you but I wonder if they could find the source of the bleeding and stop it, if you might have a significant improvement. The masto society (TMS for a cure) lists which anesthesias are better tolerated if you have MCAS and require a procedure. It's a guideline and everyone varies but might be helpful to read.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@gingergirl is being a bit generous in her praise of my knowledge of GI function, I am an expert in my own condition but there are several specialists treating me that would disagree with that too. Likewise, I am suspect of some of the crap they come up with too.

I haven't had much of an issue with bloody stools so don't have much to add that might help. Generally, the closer the bleeding site is to the anus, the brighter red the blood will be, bleeding from the anus, rectum, and the sigmoid colon tends to be bright red, whereas bleeding from the transverse colon and the right colon tends to be dark red or maroon-colored. You need to have a major bleed elsewhere in the GI tract for it to appear red as bacteria turn it black and tarry during it's transit from further up if it is a smaller bleed.

Periodic things that can cause a bleed with abdominal pain can be Ulcerative Colitis if you get diarrhea with it or Ischemic Colitis where there is a more formed bowel motion or even the likes of what I have, Chronic Mesenteric Ischemia although this tends to have upper abdominal pain with it and you get abdominal pain about 30 minutes after eating.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@Dmitri, If you have had an Ultrasound or CT scan of the bowel, make sure there was no mention of bowel wall thickening in the report. This can a sign suspicious of having some sort of bowel ischemia but GI's tend to disregard this finding as just a sign of a bit of inflammation which doesn't warrant any further investigation but I have found to my detriment that it can have serious repercussions when ignored.

If you have a weakened or damaged bowel mucosa layer contributing to the bleeding, I just learned yesterday of something that could help with that, delayed release phosphatidylcholine. There is a product in clinical trials for Ulcerative Colitis not yet released to the market (http://www.nature.com/ajg/journal/v109/n7/full/ajg2014104a.html) which is souped up version of PC Medicus Phosphatidylcholine by Medicus GmbH sold in Europe but I don't know if you can get it in the U.S.

One of the co-inventors of this product suggests you could get the same benefit doing lecithin retention enemas
http://www.drmyhill.co.uk/wiki/Ulcerative_colitis_and_phosphatidylcholine_(PC)_in_the_gut
 

Dmitri

Senior Member
Messages
219
Location
NYC
@Dmitri I am tagging @Kanga Sue (to read the post directly above this one #94) b/c she is an expert in GI issues. I honestly do not know if you have MCAS although it definitely can cause major GI issues in many people. Can they test you for histamine and prostaglandins (in blood and urine)? I have severe MCAS but my tryptase and chromogranin were normal. My histamine test at end of 2014 was 4x the normal limit but now with meds, it is much closer to normal.

I asked the immunologist I saw if I can be tested for urinary histamine and prostaglandins, but he said the tests are not available in this state. Knowing positive markers would be very valuable. There is a MCAS specialist near NY, Dr. Anne Maitland, who the immunologist also mentioned, but she doesn't appear to take my insurance. But maybe that is the best shot at finding out anything about mast cell abnormalities.

Do H2 blockers help at all (like Zantac or Pepcid?) Sorry if you already answered this part and I missed it. I do not tolerate many meds but do great with both Zyrtec and Ketotefin (but I had a horrible reaction to Benadryl.) It's all so hit and miss. I also do well with Cortef which tamps down my allergic reactions to food but I do not tolerate antibiotics at all and have had horrific reactions to them. I had asked b/c was curious if you had taken a fluoroquinolone antibiotic before this all started like I did.

I haven't had experience with H2 blockers that I can recall, so it would be interesting to see what effect zantac has (provided it even works according to plan). I have both gastroparesis and reflux. Food can stay in my stomach all day but I still experience constant hunger. However, If I go without eating for more than 4 hours or so, I begin getting a ravenous sensation of hunger with a different type of burning sensation, as well as delirium if I allow it to prolong enough. And finding food that is satiating is a problem in itself, bread is a requirement not just for satiety but I feel that it acts as some kind of "cushion". The hunger and overproduction of acid don't seem consistent with standard gastroparesis, and it seems that approaching this from any angle other than treating whatever the root cause of everything is will lead to some sort of disbalance.

I have memories of vomiting up decaying food from the previous day when I was much younger.

@gingergirl is being a bit generous in her praise of my knowledge of GI function, I am an expert in my own condition but there are several specialists treating me that would disagree with that too. Likewise, I am suspect of some of the crap they come up with too.

I haven't had much of an issue with bloody stools so don't have much to add that might help. Generally, the closer the bleeding site is to the anus, the brighter red the blood will be, bleeding from the anus, rectum, and the sigmoid colon tends to be bright red, whereas bleeding from the transverse colon and the right colon tends to be dark red or maroon-colored. You need to have a major bleed elsewhere in the GI tract for it to appear red as bacteria turn it black and tarry during it's transit from further up if it is a smaller bleed.

Periodic things that can cause a bleed with abdominal pain can be Ulcerative Colitis if you get diarrhea with it or Ischemic Colitis where there is a more formed bowel motion or even the likes of what I have, Chronic Mesenteric Ischemia although this tends to have upper abdominal pain with it and you get abdominal pain about 30 minutes after eating.

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.
 

Gingergrrl

Senior Member
Messages
16,171
@gingergirl is being a bit generous in her praise of my knowledge of GI function

You are a GI expert to me ;)

I asked the immunologist I saw if I can be tested for urinary histamine and prostaglandins, but he said the tests are not available in this state.

How strange that they would not be available in the state of NY (is that where you are, I think?) Do you have Quest Labs in your area b/c I know they can run the tests, at least in my state and then my MCAS doc re-ran them through his hospital lab (last summer) and I am finally about to do them again this week pre-IVIG to see how the numbers are.

There is a MCAS specialist near NY, Dr. Anne Maitland, who the immunologist also mentioned, but she doesn't appear to take my insurance. But maybe that is the best shot at finding out anything about mast cell abnormalities.

If you really suspect MCAS (and I have no idea in your case) then I think it would be worth it to see a specialist

I haven't had experience with H2 blockers that I can recall, so it would be interesting to see what effect zantac has (provided it even works according to plan). I have both gastroparesis and reflux.

I would run this by your doctor first in case your symptoms are due to another cause. 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. (My worst symptoms relate to shortness of breath, dysautonomia/POTS, and are not GI symptoms) but in general since adding the (dye free) Pepcid, my MCAS reactions to both foods and smells have improved again.