Aa
Don't know what to think
I have been struggling with chronic hives for 4+ months that appeared out of nowhere. I have tried prednisone to no avail and am currently on Zantac, Levocetirizine, Vistaril, & Singular. The hives/rashes have no rhyme or reason and nothing seems to trigger them. I break out into night sweats almost every night and feel like I have a low grade fever in the evenings. Occasionally I will develop what my allergist has called "deep hives" on the soles of my feet. Even when I'm not itching with hives, I have red blotches all over my skin and face. From time to time (usually when I am having a flair up of the "deep hives,") the joints in my fingers will swell and they're painful. I also have had occasions where I feel like I'm having trouble catching my breath and I feel like my lungs are closing up (this has thankfully helped with starting the Singular). I've been to my primary care dr as well as 2 different allergists. They've done allergy blood testing and everything came back negative. They have also done extensive thyroid testing and as well as numerous CBCs. My dr told me "you have perfect blood at least!" In October, I had them test my ANA & ESR both of which came back normal. I had it redone about a month ago, as by this time I was completely off of Prednisone and the night sweats, fevers, & joint pain began. I also had a CXR which was negative. The dr's office called me and told me my ANA was normal and I requested a copy of my bloodwork. I received it yesterday and my ANA was positive. My titer was 1:80 which I understand to be on the weak side of positive. He also ran Anti DNA, tryptase, & glactose-alpha-1, 3-galactose IgE which were all within normal range.
I am at a loss right now. I am miserable and nothing seems to be working. The worst part is, is that I feel like I'm going crazy because none of my doctors can find anything "wrong" with me, and I feel as if I have exhausted any meds that I could take that would help. What should my next step be? What does this sound like?
I am at a loss right now. I am miserable and nothing seems to be working. The worst part is, is that I feel like I'm going crazy because none of my doctors can find anything "wrong" with me, and I feel as if I have exhausted any meds that I could take that would help. What should my next step be? What does this sound like?
Hey danceruneagle. Welcome to the forum.
Everything points to the possibility of an underlying undetected infectious condition.
Standard testing will reveal very little, if anything at all.
The new additional symptoms indicate that it is a systemic condition,
meaning one that affects a number of organs, tissues and systems of the body, or affects the entire body.
Things to look into or to rule out:
1. Pathogenic infections such as All Borrelia species- not just Borrelia Burgdoferi,Anaplasma phagocytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search here in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor here recently in this community.
If you haven't seen an LLMD and if you haven't done a complete Borellia and co-infections panel using IgeneX Labs, you're nowhere close getting any answers, should you indeed have a low grade infectious condition from the above list (or combination).
2. HLA panel to verify the body's ability to fight biotoxins
3. Heavy metal toxicity. Complete organ detoxification is recommended.
4. Stool analysis for pathogenic bacteria, parasites, yeast, and levels of beneficial bacteria, as well as leaky gut syndrome. See also #10 & #11
5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs
6. Hypothyroid TYPE 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into this. Very common!
7. Deficiencies. Tissue magnesium-not blood magnesium!
Glutathione, Potassium, Neurotransmitters, B12 and D3
8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.
9. PTSD Any past traumas and emotional events including childhood and not in memory.
Hypnotherapy is suggested to uncover any repressed memories and to have them dealt with.
Energy Medicine Psychotherapy would produce the most efficient results
in the shortest time, in comparison to any other type of therapy.
10. Candida (you may do on your own the saliva test-find it on YouTube-
as a preliminary test).
11. Leaky Gut Syndrome (often linked to Candida)
There's a simple urine test available for Leaky Gut Syndrome: mannito/lactulose test.
11.Grains/carbs/gluten intolerance
Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected.
Most hypothyroid sufferers have gluten intolerance and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!
12.One thing that you can do on your own-before you explore this Gliadin test further-
is Dr. Coca's Pulse Test, it's a free download, and it will indicate within a week,any reactivity, any allergies, any intolerance and sensitivity to anything ingested,that is considered offensive by the immune system.
It is a great self-test, for the degree of accuracy, however, should you find it too difficult to do because of your work, there's a simplified version that I can send you, as second option.
Never mind; It takes just an extra minute. Here it is:
Dr. Cocoa's Pulse Test (simplified version)Just sit in a chair and come to rest for about 5 minutes. Take your pulse for a full 1 minute (not the 15 sec. multiply by 4 thing). Then put whatever you want to test in your mouth and chew it for 30 seconds. Then take your pulse again. If you find it is faster by 6 beats, you are allergic or have a sensitivity to it. If you have type “O” blood, use 4 beats as the criteria instead of 6. It’s that simple.
Enough material to go through, however, many of your answers are within
these 12 aforementioned suggestions.
Feel free to post again here, or pm me directly any time.
Wish you well.
Niko
Everything points to the possibility of an underlying undetected infectious condition.
Standard testing will reveal very little, if anything at all.
The new additional symptoms indicate that it is a systemic condition,
meaning one that affects a number of organs, tissues and systems of the body, or affects the entire body.
Things to look into or to rule out:
1. Pathogenic infections such as All Borrelia species- not just Borrelia Burgdoferi,Anaplasma phagocytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search here in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor here recently in this community.
If you haven't seen an LLMD and if you haven't done a complete Borellia and co-infections panel using IgeneX Labs, you're nowhere close getting any answers, should you indeed have a low grade infectious condition from the above list (or combination).
2. HLA panel to verify the body's ability to fight biotoxins
3. Heavy metal toxicity. Complete organ detoxification is recommended.
4. Stool analysis for pathogenic bacteria, parasites, yeast, and levels of beneficial bacteria, as well as leaky gut syndrome. See also #10 & #11
5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs
6. Hypothyroid TYPE 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into this. Very common!
7. Deficiencies. Tissue magnesium-not blood magnesium!
Glutathione, Potassium, Neurotransmitters, B12 and D3
8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.
9. PTSD Any past traumas and emotional events including childhood and not in memory.
Hypnotherapy is suggested to uncover any repressed memories and to have them dealt with.
Energy Medicine Psychotherapy would produce the most efficient results
in the shortest time, in comparison to any other type of therapy.
10. Candida (you may do on your own the saliva test-find it on YouTube-
as a preliminary test).
11. Leaky Gut Syndrome (often linked to Candida)
There's a simple urine test available for Leaky Gut Syndrome: mannito/lactulose test.
11.Grains/carbs/gluten intolerance
Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected.
Most hypothyroid sufferers have gluten intolerance and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!
12.One thing that you can do on your own-before you explore this Gliadin test further-
is Dr. Coca's Pulse Test, it's a free download, and it will indicate within a week,any reactivity, any allergies, any intolerance and sensitivity to anything ingested,that is considered offensive by the immune system.
It is a great self-test, for the degree of accuracy, however, should you find it too difficult to do because of your work, there's a simplified version that I can send you, as second option.
Never mind; It takes just an extra minute. Here it is:
Dr. Cocoa's Pulse Test (simplified version)Just sit in a chair and come to rest for about 5 minutes. Take your pulse for a full 1 minute (not the 15 sec. multiply by 4 thing). Then put whatever you want to test in your mouth and chew it for 30 seconds. Then take your pulse again. If you find it is faster by 6 beats, you are allergic or have a sensitivity to it. If you have type “O” blood, use 4 beats as the criteria instead of 6. It’s that simple.
Enough material to go through, however, many of your answers are within
these 12 aforementioned suggestions.
Feel free to post again here, or pm me directly any time.
Wish you well.
Niko
Thanks. That's actually the first set of tests I had done and everything came back normal. It's just so frustrating Bc it seems like nothing helps and ill never figure out what's wrong with me. I'm scared of lupus but none of my docs have seemed to think its even a possibility. Just don't know which direction to take next even though I KNOW something is wrong, I just know it but my blood tests (other than my weak positiveANA titer) say otherwise :(
No problem. :)
As i have both hyper and hypo symptoms at the same time and have many, many symptoms. My major issues are shortness of breath and numbness all over which can be due to both hyper and hypo. The following is a selection of symptoms...
Hyperthyroid - extreme sudden fatigue - need to take a nap asap, hyperactive energy (short lived), hair loss, insomnia, excessive sweating, diarrhea, fast heart rate, high blood pressure or fluctuating blood pressure, extreme muscle weakness, shaky hands, splinter haemorrages on my nails, facial flushing, weight loss...
Hypothyroid - chronic fatigue, fluid retention, myxedema (swelling and puffiness of the skin), enlarged tongue, one eyelid drooping, pain on standing, burning feet, lack of sweating, carpal tunnel, neck and hip pain, no knee reflexes, constipation, hair loss, memory loss, poor appetite, weight gain, eyebrows thinning on the ends, lack of motivation...
As i have both hyper and hypo symptoms at the same time and have many, many symptoms. My major issues are shortness of breath and numbness all over which can be due to both hyper and hypo. The following is a selection of symptoms...
Hyperthyroid - extreme sudden fatigue - need to take a nap asap, hyperactive energy (short lived), hair loss, insomnia, excessive sweating, diarrhea, fast heart rate, high blood pressure or fluctuating blood pressure, extreme muscle weakness, shaky hands, splinter haemorrages on my nails, facial flushing, weight loss...
Hypothyroid - chronic fatigue, fluid retention, myxedema (swelling and puffiness of the skin), enlarged tongue, one eyelid drooping, pain on standing, burning feet, lack of sweating, carpal tunnel, neck and hip pain, no knee reflexes, constipation, hair loss, memory loss, poor appetite, weight gain, eyebrows thinning on the ends, lack of motivation...
I too have a red butterfly rash across my cheeks that only appears randomly after a shower and lasts for about an hour. It was only when i had a full hashitoxicosis flare (hyperthyroid flare up - i have Hashimoto's thyroiditis - autoimmune hypothyroidism) for two months that i realised this symptom was due to my autoimmune thyroid condition!
If your thyroid labs did not include thyroid antibodies, then i'd highly recommend thyroid peroxidase antibody (TPOAb) and thyroglobulin antibody (TgAb).
***
"Elevated thyroid antibodies are often associated with chronic urticaria, also called hives. Studies report that as many as 57.4% of patients with hives have the presence of anti-thyroid antibodies. An August 2010 paper suggests that treatment with T4 improves the itching associated with urticaria, but did not advise treatment with T4 unless the patient was hypothyroid." - excerpt from Life Extention - Thyroid Regulation
If your thyroid labs did not include thyroid antibodies, then i'd highly recommend thyroid peroxidase antibody (TPOAb) and thyroglobulin antibody (TgAb).
***
"Elevated thyroid antibodies are often associated with chronic urticaria, also called hives. Studies report that as many as 57.4% of patients with hives have the presence of anti-thyroid antibodies. An August 2010 paper suggests that treatment with T4 improves the itching associated with urticaria, but did not advise treatment with T4 unless the patient was hypothyroid." - excerpt from Life Extention - Thyroid Regulation
I have a blotchy red rash that shows up around my nose/cheeks but it usually happens only when I get out of the shower. I have been getting mouth ulcers recently. The painful joints only happen every once in a while. I feel febrile almost every night, I am very tired too but I attribute that to being in nursing school. I had a low vitamin D count back in the spring but haven't had it tested since. My throat's been hurting for the last 2 weeks, and I'm always cold. Nobody has tested my urine. Lupus has been my biggest fear, but none of my doctors have really taken that as a consideration when I mention it. (By the way I'm a 27 year old female if that makes any difference) However my symptoms keep changing. At first it was just hives, but within the past 2 months I've developed these new symptoms: red splotchy rash all over my body, the joint pain, joint swelling (usually in my thumbs and middle and first fingers as well as my toe joints), swollen feet, night sweats, feeling fever-ish, and tightness of my chest/shortness of breath. I just don't know where to go from here and seems like nobody takes my fears seriously.
Just because your ANA was low doesn't totally rule out something autoimmune. Mine has been all over the chart. After spending time in the sun it jumped to 1:2,560, but after being on plaquinel for years, it is now negative.
Hi and welcome to MedHelp.
I'm going to list some symptoms of lupus and you let me know which ones you have.
There are 11 criteria for a lupus dx. You must have at least 4 of the 11 to recieve a dx.
They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
fever (90-95%)
low vit D levels
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
I'm going to list some symptoms of lupus and you let me know which ones you have.
There are 11 criteria for a lupus dx. You must have at least 4 of the 11 to recieve a dx.
They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
fever (90-95%)
low vit D levels
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
Have an Answer?
You are reading content posted in the Autoimmune Disorders Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
