Aa
Seeking a little peace of mind!!!
I have been having ongoing issues for almost 3 years, but more of my symptoms for longer. Most of this started after my dh was hospitalized for an unknown infection and I was extremely stressed out. My youngest son also started school that year and I was at home alone for the first time since having kids. I started with headaches and dizziness (the dizziness I have had on and off for a few years) while painting my son's room. I am currently waiting on test results for Radon for his room due to him having fatigue and headaches, something I also deal with. After that, I started getting bee sting type pains in various body parts as well as breast pain, which an U/S revealed nothing. At this time, my right arm also felt like it was swollen. I paint with my R arm and I was also getting shoulder pain and pinched nerve type feeling and extremely tight muscles on that side of my body. I have a history of TMJ as a teenager, but that was taken care of. I tend to clench my jaws, especially when nervous or worked up. At this time, I was also extremely tired and falling asleep around 7:30 at night, but not waking up refreshed. Had some abdominal pain with diahrea and constipation. I also had extreme back, hip, shoulder, and chest and rib pain as well as burning muscle pain. In February or March of 2011, I had swelling of my submandibular glands and a red, flat rash that itched on my neck and chin. Went to my internist (who I no longer see because he wanted to push anti-depressants on me and never even once touched me to check glands or anything) and he prescribed antifungal/steroid cream. Didn't help, but eventually it went away. I lost a little weight at this time, but gained it all back, plus some. Things were okay for the most part, but I still had muscle and joint pain and headaches and sometimes stomach aches.
I had a lot of bloodwork done this past January and here are the things that came up: Low Vitamin D (17), slightly low iron, and B12. High Cholesterol at 217, and my lymph % and # have been consistently low (around 13 and normal is 18 for our lab, I think, I can't find my papers). I was also tested for Lyme, which the initial screening was positive, but only one band came back on the second test. I have also had abdominal pain in the URQ, between my ribs and belly button, for the most part, but it sometimes it goes down towards my hip. Sometimes I can feel a tender lump, but other times it feels like a crampy type pain. Once in a while I get the cramp pain near my groin, but I have had that on and off since being pregnant with my second son.
I did have chest Xray in February when I went to the ER for a panic attack. I laid down that night and felt like I wasn't going to wake up. The Xray was clear and he gave my Xanax, which I have only taken a few of when I needed them. I played volleyball with my son and felt good for the most part. The end of April I started with the swelling of the salivary glands again as well as extreme upper abdominal pain and bloating. Had an U/S of the URQ and it was clear. It was also extremely tender at that time. I had my son to the PA for something else and showed her my rash and the glands, She said autoimmune and wanted me to see a Rheumy. I haven't made that appt yet and my glands seem to be going down at the moment. I did see a nutrtitionist who did a Bio Feedback scan and a few things came up on there. I am taking supplements and waiting a few more days to see if that helps. Babesia came up on that scan, so not sure if I should get checked on that. I do have all over body itching, sometimes deep in my muscles and bones (mainly shins). It feels like bugs crawling all over me. I also get an itchy scalp and sores on my head. I have a history of allergies to cats and pollen. Yesterday I went out to feed my goats and reached under the gate to get some foods and ended up itchy and burning and developed welts on my arms.
Sorry for rambling, but I am worried that I have had cancer for 3 years and no one has detected it. I have had joint and muscle pain for quite sometime (been married for 14 years and lived in this house for 14 years, so not sure if radon could be the problem). I don't get sick but maybe 2 times a year and my colds only last 2-3 days. I have been having mild night sweats, but not drenching. No fever, in fact, my temp usually runs a bit low. My rash seems to come out during temperature changes or when I am worked up. I also experience odd brusing on my abdomen and legs at times. I have recently given up gluten and most dairy to see if that would help with abdominal pain and it has decreased my bloating and somewhat the abdominal pain. I also should say that I had an u/s on my ovaries 2 years ago and that was clear as well. Thank you for taking your time to read. Not sure where I should go from here though.
I had a lot of bloodwork done this past January and here are the things that came up: Low Vitamin D (17), slightly low iron, and B12. High Cholesterol at 217, and my lymph % and # have been consistently low (around 13 and normal is 18 for our lab, I think, I can't find my papers). I was also tested for Lyme, which the initial screening was positive, but only one band came back on the second test. I have also had abdominal pain in the URQ, between my ribs and belly button, for the most part, but it sometimes it goes down towards my hip. Sometimes I can feel a tender lump, but other times it feels like a crampy type pain. Once in a while I get the cramp pain near my groin, but I have had that on and off since being pregnant with my second son.
I did have chest Xray in February when I went to the ER for a panic attack. I laid down that night and felt like I wasn't going to wake up. The Xray was clear and he gave my Xanax, which I have only taken a few of when I needed them. I played volleyball with my son and felt good for the most part. The end of April I started with the swelling of the salivary glands again as well as extreme upper abdominal pain and bloating. Had an U/S of the URQ and it was clear. It was also extremely tender at that time. I had my son to the PA for something else and showed her my rash and the glands, She said autoimmune and wanted me to see a Rheumy. I haven't made that appt yet and my glands seem to be going down at the moment. I did see a nutrtitionist who did a Bio Feedback scan and a few things came up on there. I am taking supplements and waiting a few more days to see if that helps. Babesia came up on that scan, so not sure if I should get checked on that. I do have all over body itching, sometimes deep in my muscles and bones (mainly shins). It feels like bugs crawling all over me. I also get an itchy scalp and sores on my head. I have a history of allergies to cats and pollen. Yesterday I went out to feed my goats and reached under the gate to get some foods and ended up itchy and burning and developed welts on my arms.
Sorry for rambling, but I am worried that I have had cancer for 3 years and no one has detected it. I have had joint and muscle pain for quite sometime (been married for 14 years and lived in this house for 14 years, so not sure if radon could be the problem). I don't get sick but maybe 2 times a year and my colds only last 2-3 days. I have been having mild night sweats, but not drenching. No fever, in fact, my temp usually runs a bit low. My rash seems to come out during temperature changes or when I am worked up. I also experience odd brusing on my abdomen and legs at times. I have recently given up gluten and most dairy to see if that would help with abdominal pain and it has decreased my bloating and somewhat the abdominal pain. I also should say that I had an u/s on my ovaries 2 years ago and that was clear as well. Thank you for taking your time to read. Not sure where I should go from here though.
I am quickly becoming an expert at things I never would have thought! I had no idea about the histamine complex, that is interesting. I may have to get a copy of my dh's records and see if I can find my copy. SOmetimes it feels like the pain in my stomach is almost muscular. I will review that leaky gut diet and do some more research. IC has also come up in my search. So many symptoms, just not sure if they are all connected or not!
COMMUNITY LEADER
Well, the thing to do now is to become your own expert, which will take a while. You have an advantage because you already know a lot medically. Plus, since this is likely partially genetics (e.g. SNPs), you'll be helping your children.
You might have trouble from doctors, some of whom go with the "it's all in your head" as if by their reflex. Most others just won't know as much as you soon will. There is no magic expert to go to for a magical cure, either.
It's somewhat possible that your panic attack was really something medical. You maybe have an adrenalin angle that's unusual, whereas adrenalin is usually a mast cell stabilizer (as in anaphylaxis). Here's something you might not know: the same histamine that is responsible for allergy symptoms, plus so much more, is also a neurotransmitter. And Tagamet is really an antihistamine, not a direct antacid. So that gives an idea of the complexity of what mast cells and these biochemicals can do.
There are probably lots of video talks, so it's not necessarily all about reading endlessly. Expect many different points of view. There's nothing simple.
Step #1 is probably to have nothing to eat that might worsen leaky gut. Step # would be to review your husband's records to make a guess on what he had. (You likely know that the bull's eye rash is not necessary for Lyme.)
And btw, nodes that are painful are not usually cancerous.
UTIs might be more common with CFS, or interstitial cystitis.
Yep, it's a barrage of info :)
You might have trouble from doctors, some of whom go with the "it's all in your head" as if by their reflex. Most others just won't know as much as you soon will. There is no magic expert to go to for a magical cure, either.
It's somewhat possible that your panic attack was really something medical. You maybe have an adrenalin angle that's unusual, whereas adrenalin is usually a mast cell stabilizer (as in anaphylaxis). Here's something you might not know: the same histamine that is responsible for allergy symptoms, plus so much more, is also a neurotransmitter. And Tagamet is really an antihistamine, not a direct antacid. So that gives an idea of the complexity of what mast cells and these biochemicals can do.
There are probably lots of video talks, so it's not necessarily all about reading endlessly. Expect many different points of view. There's nothing simple.
Step #1 is probably to have nothing to eat that might worsen leaky gut. Step # would be to review your husband's records to make a guess on what he had. (You likely know that the bull's eye rash is not necessary for Lyme.)
And btw, nodes that are painful are not usually cancerous.
UTIs might be more common with CFS, or interstitial cystitis.
Yep, it's a barrage of info :)
I know about the diarrhea from abx, and I was eating yogurt, but was also stressed about the other symptoms at that time. I don't react too badly from stings (haven't been stung for a while), but my middle son does. I was having a lot of saliva at the time my nodes were swollen, that is what made me think they were the salivary glands. They are still slightly enlarged, but not as painful as they had been. I do have polyuria and insomnia at times. Sometimes I have trouble urinating or going a lot of the time. I think I have some sort of infection going on, but not sure where to go from here. I try to stay at stress free as possible, but that isn't always easy. I was stressed last night over the dumbest thing. I want to find out what is wrong with me so I can be the mom and wife my kids and husband deserve. Thanks for trying to find some answers.
COMMUNITY LEADER
As for being your own detective, here is one possibility:
https://en.wikipedia.org/wiki/Human_granulocytic_anaplasmosis
You might have an atypical case of a rare pathogen. If it was easy to diagnose, they would have found it out with your husband. The again, Lyme can act in many different ways.
Btw, I myself wouldn't be spending more money on the Bioscans or whatever that was :) Sometimes people do get desperate for answers, but that approach seems to be unfounded.
https://en.wikipedia.org/wiki/Human_granulocytic_anaplasmosis
You might have an atypical case of a rare pathogen. If it was easy to diagnose, they would have found it out with your husband. The again, Lyme can act in many different ways.
Btw, I myself wouldn't be spending more money on the Bioscans or whatever that was :) Sometimes people do get desperate for answers, but that approach seems to be unfounded.
COMMUNITY LEADER
Here's one thing to do: take your pulse while sitting and relaxed, then again after standing. You're looking for POTS, which is the reaction when the blood pools in the legs. Ideally, take BP also - looking for orthostatic hypotension. Do your symtpoms happen *every* time upon standing?
Yes. you have all the signs of CFS, but additionally having the muscle and joint pains it would be the other kind called ME. Onset is often with stress and an infection.
But maybe you can get well just with eliminating whatever you had at the start: very likely that same infection as your husband. That is the key to the mystery. maybe you were just as ill but figured you had to endure it to take care of things?
Btw:
- diarrhea is common from ABX, because it wipes out the friendly bacteria, next time also take yogurt
- swelling of feet and hands is probably from histamine. Do you get bad reactions to wasp stings? You can also read about MCAS just as a reference..
- submandibular lymph nodes are not the same as salivary glands
- you have polyuria? insomnia?
- is there a specific plant by that fence, that gave you the urticaria?
On the plus side: Maybe you don't have ME, maybe by making it your job to get rest and stress reduction you can not descend into that. But I'd suggest finding some patient accounts to read as a warning that toughing it out can end up very badly.
So, does the dizziness occur every time when standing?
Yes. you have all the signs of CFS, but additionally having the muscle and joint pains it would be the other kind called ME. Onset is often with stress and an infection.
But maybe you can get well just with eliminating whatever you had at the start: very likely that same infection as your husband. That is the key to the mystery. maybe you were just as ill but figured you had to endure it to take care of things?
Btw:
- diarrhea is common from ABX, because it wipes out the friendly bacteria, next time also take yogurt
- swelling of feet and hands is probably from histamine. Do you get bad reactions to wasp stings? You can also read about MCAS just as a reference..
- submandibular lymph nodes are not the same as salivary glands
- you have polyuria? insomnia?
- is there a specific plant by that fence, that gave you the urticaria?
On the plus side: Maybe you don't have ME, maybe by making it your job to get rest and stress reduction you can not descend into that. But I'd suggest finding some patient accounts to read as a warning that toughing it out can end up very badly.
So, does the dizziness occur every time when standing?
once in a while, if I am completely calm and unstressed, I will feel completely normal. this is only once in a GREAT while!
I also want to mention that I have slight swelling of my feet and hands at times, too.
Yes, I do get dizzy at times and do have unrefreshing sleep. I did have abx when this first started a skin infection on my breasts (I think it is folliculitis), but it just gave me diahrea! I have three boys, a husband, and a small goat herd that I am responsible for. I don't like to complain about my problems, only to my mom and occasionally my husband. Last week, for the two days after my apt with the nutrionist, I felt great, I wasn't tired or moody, which I have been for a LONG time. I was off gluten at that point, but ate it on Saturday and have been off again since Sunday, but I am still tired. Are you thinking CFS?
COMMUNITY LEADER
At this point you seem to be getting better on your own. I suspect this has happened many times in the past, only to get bad again.
Do you get dizzy when you stand up, with pulse racing?
Do you still have unrefreshing sleep?
I won't write anymore just yet, until you reply. But I do strongly suggest not to push yourself. If you do, you might dig a deep hole that would be very hard to get out of. It's time to be prudent, not to show how tough you can be :)
I wouldn't rush to a specialist just yet, either - seeing as how you are currently improving. You might end up with treatments you don't need. Still, I'm surprised you don't say that a doc gave ABX to see what happens. That would seem reasonable.
Do you get dizzy when you stand up, with pulse racing?
Do you still have unrefreshing sleep?
I won't write anymore just yet, until you reply. But I do strongly suggest not to push yourself. If you do, you might dig a deep hole that would be very hard to get out of. It's time to be prudent, not to show how tough you can be :)
I wouldn't rush to a specialist just yet, either - seeing as how you are currently improving. You might end up with treatments you don't need. Still, I'm surprised you don't say that a doc gave ABX to see what happens. That would seem reasonable.
Thanks so much for your comment. Yes, this doctor tried to give me antidepressants twice! No thanks. My last lymph count was normal, but low normal. My salivary glands have seem to gone down, but I am wondering if they were from GERD, possibly caused by celiac! I have thought about the leaky gut and have really been trying to watch what I eat. I have lost a few pounds from not eating wheat over the past week or so. I have always struggled to lose weight, needing to exercise (which I haven't had the energy to do for almost 3 years). Just not sure which avenue to pursue next, a GI, an allergist, a CT scan. As far as I know I haven't had Mono, at least not diagnosed. My sil had it and said she could barely function for about a month, but I have never been that bad. My family never does health things normal either, so who knows.
COMMUNITY LEADER
Hi, as I'd read halfway through the first paragraph I was thinking that you would be told that it's all in your head - which it turns out, you were told. But in reality, you seem to have some immune activation problems. However, it might take a while to track down exactly what is happening.
Bartonella is certainly a possibility, but yours is of unusually long duration. If you read up on it, you'll see the wide range of symptoms that are possible in an unusual case. Borrelia is also possible, with or without babesia - some people get IV ABX for months or longer.
Or a virus. Did you have really bad mono earlier in life? Some people have very reactive immune systems. You can also read about Chronic EBV.
Cancer can act in mysterious ways, too, but your symptoms would not be typical - especially as you have noted about the coming and going. Nodes can wax and wane but wouldn't enlarge and disappear. As an example, my father had lymphoma but no symptoms for quite a long time even after diagnosis - except for one enlarged node that never went down.
Histamine is likely the immune chemical responsible for most of your symptoms. Histamine is released by the mast cells, in skin and gut and lungs and other places. Temperature and stress hormones are just two of the many things that can activate them.
If you react badly to sugar, cut that out completely and maybe read about "leaky gut".
Your lymphocytopenia stands out, which can happen during infections. The question is: what infection? As you've seen with the lyme, things can be unclear. You might have to become your own expert, but at least without worrying too much about cancer.
Bartonella is certainly a possibility, but yours is of unusually long duration. If you read up on it, you'll see the wide range of symptoms that are possible in an unusual case. Borrelia is also possible, with or without babesia - some people get IV ABX for months or longer.
Or a virus. Did you have really bad mono earlier in life? Some people have very reactive immune systems. You can also read about Chronic EBV.
Cancer can act in mysterious ways, too, but your symptoms would not be typical - especially as you have noted about the coming and going. Nodes can wax and wane but wouldn't enlarge and disappear. As an example, my father had lymphoma but no symptoms for quite a long time even after diagnosis - except for one enlarged node that never went down.
Histamine is likely the immune chemical responsible for most of your symptoms. Histamine is released by the mast cells, in skin and gut and lungs and other places. Temperature and stress hormones are just two of the many things that can activate them.
If you react badly to sugar, cut that out completely and maybe read about "leaky gut".
Your lymphocytopenia stands out, which can happen during infections. The question is: what infection? As you've seen with the lyme, things can be unclear. You might have to become your own expert, but at least without worrying too much about cancer.
I don't think I have an palpable lymph nodes, but I always thought they would be huge and noticeable. I have felt above my breast and something feels sort of lumpy, but I figured it was from my cystic breasts. I can also feel something down my right arm, on the inside, it feels sort of lumpy. At the same time some of this started we had kittens in the house and I got scratched, so may cat scratch disease? It just feels like my arm is swollen sometimes and then other times it feels normal. I have had two mammograms that have been clear as well. History of breast and kidney cancer in family.
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