Severe allergies

[Lissyleigh]

Does anyone else suffer from severe allergies as part of their m.e? I mean like uncontrollable sneezing which appears to be linked to a massive production of histamine? I know this isn't a straightforward allergic reaction because it would occur during PEM and during it I would react to everything. I would literally sneeze at least once or twice every minute and this would last all day. I also got severe nasal drip which was uncontrollable like a tap (horrible I know), stinging eyes, and body aches and pains so I felt like I had a nasty virus. Any food or activity would make the sneezing worse.

Since my doc put me on fexofenadine, these symptoms have radically improved. I sneeze nowhere near as much as I used to and I don't experience as many migraines either, which a nutritionist thought were linked to histamine. I just wondered if anyone else has or used to get symptoms like this.

 

[Snowdrop]

Many people here have allergies. There is much discussion around MCAS (Mast Cell Activation Syndrome)
You can read something about it here: http://www.mastocytosis.ca/MSC Patient Experience April2012.pdf
as well as many threads here on PR.

 

[Allyb510]

Does anyone else suffer from severe allergies as part of their m.e? I mean like uncontrollable sneezing which appears to be linked to a massive production of histamine? I know this isn't a straightforward allergic reaction because it would occur during PEM and during it I would react to everything. I would literally sneeze at least once or twice every minute and this would last all day. I also got severe nasal drip which was uncontrollable like a tap (horrible I know), stinging eyes, and body aches and pains so I felt like I had a nasty virus. Any food or activity would make the sneezing worse.

Since my doc put me on fexofenadine, these symptoms have radically improved. I sneeze nowhere near as much as I used to and I don't experience as many migraines either, which a nutritionist thought were linked to histamine. I just wondered if anyone else has or used to get symptoms like this.

Hi @Lissyleigh,

I wonder if you have mast cell disease? There are a number of people here who have it along with their ME. I myself am going to see a specialist next week. There are so few of these who are capable of diagnosing MCAD. It sounds as though allergy is very prominent in you, so it might be worth considering this.

All the best.

 

[Lissyleigh]

Interesting thanks for the replies. I hadn't heard of a mast cell disease but will look into it. My doc calls it an allergy disorder but the allergies I've had pre onset of m.e are different in nature and severity to the alllergies I experience with the m.e. I will literally be incapacitated with them but it gnerally happens during PEM.

 

[Mohawk1995]

Our son had very strong allergic reactions during his bouts with ME. He sneezed and was stuffed up continuously. He even had an anaphylactic reaction to routine allergy testing in the doctor's office. I am confident he had a form of "Mast Cell Activation Syndrome". He too had different type of allergy issues prior to having ME and different since he has made an apparent recovery.

Mast Cell Activation Syndrome is an interesting phenomenon and for those who suffer severely with it, it can be crippling as some on this site can attest to. Two interesting things I see: 1) There is no known cause for MCAS. For some reason and in some people there is an "over activation" of these immune/neuro-immune cells. Some genetic link perhaps. 2) Migraine sufferers typically have Mast Cell "over activation" as well.

So it would appear that Neuro-immune and Mast Cell Activation Syndrome are linked. Perhaps some excessively strong neuro-protective response is causing the body to over produce the cells? If so, then there would be some support for why this occurs and why there may be links between Migraines and ME as many here know to be a reality. The nervous systems ability to activate or deactivate cells and cell production should not be underestimated in my opinion. As I have mentioned before this has little if anything at all to do with cognitive functions of the nervous system.

The theory (in my opinion a very logical one) being that the nervous system is attempting to protect the body from an "interpreted" threat. That may be something that is directly threatening like toxins, poisons, noxious fumes, physical harm, injury or it could be something that is not directly threatening like perfumes, common dust, pollen, smells, light, loud noises. It is "over-reacting" (by turning on too strong or staying on too long) and once ramped up is literally impossible to stop (migraines, anaphylaxis, nausea and even possibly ME, MCAS or withdrawal). Again these reactions are not within the ability of the conscious mind to control. So no CBT or GET will even come close to fixing it.

 

[Strawberry]

@Lissyleigh I found your story interesting so wanted to share mine. I also have been diagnosed recently with MCAS, probably comorbid to CFS because I do have PEM.

My allergies started about the same time as my muscle stamina issues (30 years ago), and they got far worse once the chronic sick of CFS kicked in (23 years ago). I do believe my allergies are worse when I have PEM. MCAS treatment (if you can get any) may not help much, but at least (in my case) it relieves some allergy symptoms so that the CFS is a teeny bit more tolerable.

There is a book published by Dr Lawrence Afrin https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615 I suggest you read this if you can. It is worth its weight for many of us here with MCAS.

 

[Nickster]

Our son had very strong allergic reactions during his bouts with ME. He sneezed and was stuffed up continuously. He even had an anaphylactic reaction to routine allergy testing in the doctor's office. I am confident he had a form of "Mast Cell Activation Syndrome". He too had different type of allergy issues prior to having ME and different since he has made an apparent recovery.

Mast Cell Activation Syndrome is an interesting phenomenon and for those who suffer severely with it, it can be crippling as some on this site can attest to. Two interesting things I see: 1) There is no known cause for MCAS. For some reason and in some people there is an "over activation" of these immune/neuro-immune cells. Some genetic link perhaps. 2) Migraine sufferers typically have Mast Cell "over activation" as well.

So it would appear that Neuro-immune and Mast Cell Activation Syndrome are linked. Perhaps some excessively strong neuro-protective response is causing the body to over produce the cells? If so, then there would be some support for why this occurs and why there may be links between Migraines and ME as many here know to be a reality. The nervous systems ability to activate or deactivate cells and cell production should not be underestimated in my opinion. As I have mentioned before this has little if anything at all to do with cognitive functions of the nervous system.

The theory (in my opinion a very logical one) being that the nervous system is attempting to protect the body from an "interpreted" threat. That may be something that is directly threatening like toxins, poisons, noxious fumes, physical harm, injury or it could be something that is not directly threatening like perfumes, common dust, pollen, smells, light, loud noises. It is "over-reacting" (by turning on too strong or staying on too long) and once ramped up is literally impossible to stop (migraines, anaphylaxis, nausea and even possibly ME, MCAS or withdrawal). Again these reactions are not within the ability of the conscious mind to control. So no CBT or GET will even come close to fixing it.

My son has severe allergic reactions now and prior to CFS/ME his allergies were not this bad definitely MCAS and his digestions issues are worst. Your son has made a recovery (that's wonderful and encouraging). Can you tell us what he did to get better or any thoughts of what may have helped him to recover?

 

[Mohawk1995]

We saw Dr Lerner prior to his passing. Others have seen him without success so I don't want to mislead anyone into thinking his approach was the end all be all. Please feel free to send a message to my inbox if you have more questions. There were many times when I literally asked God to give me this and take it from my son. There are no words for how difficult it is. Keep fighting for him, he is worth it no matter what! This is from a prior post:

Prior to seeing Dr. Lerner, we went through 4 years of treatments for Atypical Migraines that included many of the treatments being used for CFS/ME. I do agree that some younger patients have greater opportunity to spontaneously recover which I think can be attributed to body development and probably hormone changes.

That being said, the timing of and the radical changes that took place with treatment would indicate that the treatment was a significant part of his recovery. It took an additional 3 years to get to the point where my son feels he is completely recovered. Of course, in the back of our minds as parents we still worry about a return.

Our son was placed on a very controversial treatment regimen and we waited until he was 18 years old for him to decide he wanted to proceed. The treatment, after many tests and examinations consisted of 6 infusions of Cidofovir 2 weeks apart. There was a specific protocol with labs, saline flush post delivery and medications to protect the kidneys. He also took oral antivirals over the 12 week course as well. At the end, our son was becoming worn down with the treatment so we chose not to continue.

After treatment was concluded he worked on slowly but steadily getting himself back in shape both physically, emotionally, cognitively and spiritually. He lost 75 pounds he had put on primarily from inactivity, but also because Dr Lerner did not want him exercising during the diagnostic and treatment period. He eventually returned to school full time, work (including very physical work in a hot warehouse last summer) and gradually increasing his exercise routine. He also sought counseling which was faith based and feels this was critical to his improvement as well.

I know our experience is similar in many ways, but also different in the level of success achieved. I am so thankful for this, but also realize many people continue to suffer and do not want to say what worked for us would work for others. In fact our hearts break over and over again for those who continue to face this devastating disease every day!

Of note, we and Dr Lerner both felt that our son had a viral like onset to his CFS/ME. That may have been a factor in why his treatment was so successful.

 

[Nickster]

We saw Dr Lerner prior to his passing. Others have seen him without success so I don't want to mislead anyone into thinking his approach was the end all be all. Please feel free to send a message to my inbox if you have more questions. There were many times when I literally asked God to give me this and take it from my son. There are no words for how difficult it is. Keep fighting for him, he is worth it no matter what! This is from a prior post:

My 25 year old son has been suffering with this disease for the last 2.5 years and seems to be getting worst to the point of being bed ridden. It breaks my heart to see my son suffering and there is nothing that I can do. We have seen over 20 doctors and hundreds of tests and yet nothing has helped him. It is heart breaking to see his life go in this direction and I am helpless. I am happy that your son is doing better and that does give me some hope. I had heard good things about Dr Lerner and his success with his patients. Do you have any other recommendations or direction? Thank you for the information and empathy.