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Message started by Buster on 01/28/11 at 05:27:30

Title: Buster 's Introduction
Post by Buster on 01/28/11 at 05:27:30

Hi,

This is my first post to this forum.  I live in the San Francisco Bay Area.  My problems do not seem as severe as those of most of the people here.  I am currently being worked up by a mastocytosis researcher for possible mastocytosis or mast cell activation disorder.  My main problems are multiple drug intolerances and food intolerances.

I have had adverse drug reactions to all medications that I have tried to take on a long-term basis, including hydrocortisone and all forms of thyroid hormones, even when I’ve taken compounded versions which only contain the active ingredient and acidophilus as a filler.  I have avoided taking antihistamines because I have been worried that I would develop adverse reactions to them too.  

I also have many food intolerances and I am currently eating only 11 different foods.  I need to avoid all foods that are high in histamine, are histamine-releasing, or contain salicylates.

My reactions to all medications have the identical constellation of symptoms (I have listed them in the sequence in which they usually appear):
  • Sleepiness

  • Fatigue

  • Chills

  • Irritability

  • Depression

  • Rage reactions

  • Nasal congestion

  • Sinus/migraine (histamine-mediated) headaches

  • Minor skin rashes
These reactions can appear within days to months after I start taking a medication, but they usually occur within the first few days for most medications.  Once I have a reaction and I stop the medication, I will usually have a reaction on the first day I take the medication again.  I will then have to refrain from taking the medication for a period of weeks to months before I will be able to resume taking it.  I have even tried taking a tiny dose (e.g., 1:1000 of the standard dose) of medications to which I have had a reaction, but I will still react to them at that dose.

The symptom that is most disabling for me is fatigue.  Medications which have helped the most with my fatigue:
  • Gastrocrom – I felt completely well when I took Gastrocrom for a week, but I had to stop it because I developed welts all over my body

  • Hydrocortisone – I have a significant improvement in my symptoms when I take hydrocortisone (even doses as low as 1 mg a day)

  • Thyroid hormones
I have only had one episode of hives (the reaction to Gastrocrom) and I have never had flushing, swelling, breathing problems, or anaphylaxis or anaphylactoid reactions.

I have had a baseline tryptase level of 15 taken when I was not having a reaction.

My main worry is developing some medical condition in the future for which I may need to take some medication but would not be able to take due to drug reactions. Also, my quality of life would be so much better if I could take Gastrocrom, thyroid medication, and hydrocortisone.

What is the usual drug regimen prescribed for mastocytosis and/or mast cell activation disorder and how are these drugs introduced (i.e., one at a time or all at once)?

My doctor has suggested starting with Doxepin, but I have had adverse reactions to Sinequan (doxepin) and other tricyclic antidepressants in the past.

Title: Re: Buster 's Introduction
Post by chaco on 01/28/11 at 06:49:07

Hi, Buster.

I'm new to the forum, too, and am currently being worked up for mastocytosis by doctors that tell me they can't dx it.  Do you mind my asking the name of the researcher you're seeing?  Feel free to PM me, if you want.  Just yesterday I wrote to a researcher and am wondering if it might be the same one.

Acidophilus - I react to that as well as every digestive enzyme I've tried.  For some reason, it causes inflammation in my spine and bodywide myofascitis within 10-20 minutes of ingestion.  I'm thinking it's fermented or I've developed auto-immunity to those bacteria.  Interestingly, the level in my gut is below normal range...not sure why but I can't take probiotics to correct the deficiency.

Like you, I can only eat a handful of foods that don't put me into neuromuscular meltdown.  I also have Ehlers-Danlos Type 3 and complete avoidance of problem foods and known triggers puts those symptoms in remission - appears to be a connection.

Sorry, I can't answer any of your questions.  I've been having to treat myself in lieu of needed medical assistance that's just not available to me here in AZ.  My PCP and some other docs prescribe testing and meds (pure cromolyn and chlorophenerazine, both compounded) for me.  I was recently referred to a hematologist and am now waiting on the results of my BM A & B.

Best Wishes!

Deb Mc


Title: Re: Buster 's Introduction
Post by Starflower on 01/28/11 at 09:20:41

Hi Buster,

Welcome to the group!

Although she's a long way from California, Dr. Castells is an expert in both mast cell disorders and drug desensitization.  You might not need to see her to get a diagnosis, but I think she would be the perfect person to help with your treatment.  She's at Brigham & Women's in Boston along with Dr. Akin.

Heather

Title: Re: Buster 's Introduction
Post by Riverwn on 01/29/11 at 03:35:36

I just wanted to elcome you, both Buster and Chaco!! We are glad you made it here :)

Buster, we have people with all types/levels of mast disorders--its just that those of us who have more symptoms have bigger mouths too LOL... Im glad youve found some meds that help you. We are similar in some was and also different too in some ways and finding what we each respond to the best is mostly a matter of trial and error.. thats what happens with a rare disease .

You will need some H1 and H2 antihistamines.. especially Zantac seems to be the one we respond to the best--most of us are on 300 mg twice a day. You will also need some type of mast cell stabilzer--I see youre on Gastrocrom already (thats one) Ketotifen is another one.

We are just so lucky that there are some very brilliant minds here, like Lisa and Debbie, Heather, Joan and Jill.. they have experience and education that have helped soooo many people!! This is also the most compassionate group of people I have found on the web :)

The good thing about mast cell disorders is.. you dont ever have to advance in the disease, IF you pay attention to your triggers and, keep well and get enough rest.


Wow, Deb Mc, youve got alot on your shoulders! I hope you have good results from your BMB...

Have a wonderful weekend!
Hugs,
Ramonma

Title: Re: Buster 's Introduction
Post by Lisa on 01/29/11 at 04:42:32

Hi Buster!  Welcome!


Tell us what tests have you had done?  Have you been tested for a mast cell disorder and allergies?   These are important to have done in order t rule out some basic competition.  

If you have adverse reactions with Doxepin and other SSRIs then this is likely due to having below normal serotonin levels.  This was research done by Dr. Dean Metcalfe of the NIH and I'm one patient who also can't tolerate these meds. They exacerbate my symptoms!  I have research on this and if you'd like it for your doctor send me a PM.

I fully agree with Heather and you should have your doctor contact Dr. Castells for she's a pioneer and expert in drug dessensitization.  If anyone is going to be able to help you, it is her.  She will also be able to help your doctor figure out what is happening with you.  

I hope this helps!

Lisa

Title: Re: Buster 's Introduction
Post by DeborahW, Founder on 01/29/11 at 05:08:46

Hi and welcome! Typically patients start on what I call the basic meds. They are the histamine blocker meds (H1 and H2 blockers). For example I was a terrible anaphylaxis case, and yet Dr. Akin only started me with:

Morning:
300 mg zantac (prescription)
180 mg allegra

Evening
300 mg zantac
10 mg zyrtec

I had continued itchiness, so he eventually added 10 mg Singulair. I have been able to stop taking that, as my symptoms got so much better. Now, I bet that if my anaphylaxis had not stopped with these meds on a daily basis, then he might have had me try some other meds, eventually getting to the gastrocrom. That is just my guess on  that.

Like you, I have a hard time with antibiotics, and I wonder what if I need some sometime down the years. What will I do? It ends up being trial and error. You try one. If you get a rash, you discontinue and take some extra histamine blockers. Then you try another. I have one right now that I can take if I get sick. Eventually I will react to it, as that is my history. I can generally take an antibiotic for several years and then I will start to react to it. Luckily I rarely get sick.

You need to try a histamine blocker, just one of the basics, to see if it is okay for you. Just try one at a time, though, and give yourself maybe a week before trying a second one, which you could just add to the other one. If you end up needing an antibiotic at some point in life, it will help you to know if you get a mild rash, that you could start taking extra histamine blockers to finish out the antibiotic and kill whatever infection is going on. It is a tough situation, because you want to take an antibiotic to get well, but you have to fight the bad effects of the antibiotic with the histamine blockers. You won't want to discover for the first time then if you can take a histamine blocker. You need to find out now.

The good part is that you are not a shocker. Rashes aren't great and they indicate a problem, but it you never experience anaphylactis symptoms, then that is great. If you try a histamine blocker and it bothers, you, it sounds as if you will get a rash but no anaphylaxis.

When trying any new med, you must make sure that you are as trigger free as possible. Otherwise, you can be reacting to something else and mistakenly think that it was the new med.

Hope this helps!

By the way, Ramona, is so modest -- I go to her for advice! She is the nurse among us and a great wealth of knowledge along with all the other great people on this forum.

Title: Re: Buster 's Introduction
Post by Buster on 01/29/11 at 06:41:26

Hi Deb Mc,

I’ll PM you the name of the researcher I am seeing.

Thanks for letting me know about your reaction to the acidophilus.  It’s possible I might be reacting to the acidophilus when I take the compounded thyroid medications and hydrocortisone and not the active ingredients.

Buster

Title: Re: Buster 's Introduction
Post by Buster on 01/29/11 at 06:54:47


Hi Heather,

I was actually in the process of writing an email message to send to Dr. Castells when I found someone locally who might be able to help me. I also thought Dr. Castells would be the perfect doctor to see because of my problems with mast cells and drug intolerance.  The researcher I am seeing knows all of the experts in the field and will get their input if it is needed.

I have not ruled out going to see Dr. Castells in the future if that becomes necessary.

Thanks for your suggestion,

Buster


Title: Re: Buster 's Introduction
Post by Buster on 01/29/11 at 07:31:26

Hi Ramona,

Thanks for the welcome!

I will see if I can start with Zantac. I have had bad reactions to all fillers in medications and supplements. I will probably need to take meds whose patents have expired (such as Zantac) to be able to have them compounded for me unless I can find newer ones that don't have additional ingredients. This may be costly, because compounded meds are very expensive.

The doctor I am seeing seems to think that the active ingredients in the antihistamines will block any adverse reactions I might have to the fillers, but I am skeptical when I read that many heavily-medicated people with mast cell diseases still have reactions to many foods and drugs.

I would really like to try ketotifen after I stabilize on the antihistamines.

The only medication I am currently taking is a low dose of compounded hydrocortisone. I never tried to take Gastrocrom again after I had the allergic reaction the first time I took it.

I am really glad I found this forum.  I have a feeling I will be posting a lot during the next few weeks.

Buster

Title: Re: Buster 's Introduction
Post by Buster on 01/29/11 at 07:53:33

Hi Lisa,

The tests I have had so far are tryptase, 24-hour urine histamine (not N-methyl-histamine), IgA, IgD, IgE, IgG. I am in the process of having 3 additional tryptase tests done over the course of 3 weeks. The one baseline tryptase test done a year ago was slightly elevated (15). The histamine and the IgA, IgD, IgE, IgG tests were all normal.  I am still in the process of doing the 3 tryptase tests.

I am being skin-tested for allergies, but so far, there have been no major allergens detected.  The skin tests for food are either not reliable or I have food intolerances, because I react to many foods which tested as negative.

I have had blood serotonin levels taken in the past and they have always been below normal.  I take 200 mg of 5-HTP a day to boost my serotonin levels.

I will PM you regarding the research you have on this.

Thanks for your help,

Buster

Title: Re: Buster 's Introduction
Post by Buster on 01/29/11 at 09:09:14

Hi Deborah,

Thanks for creating and running this forum for people with mast cell diseases!

I will see if my doctor will let me start with Zantac and then add one of the H1 blockers a week later, as you suggested. I would like to try those meds with a relatively clean side effect profile first. Doxepin seems to be a "love it or hate it" med for most people. It just seems too risky to take initially, given my problems tolerating all drugs.

You are right about having a "game plan" for taking antibiotics in the future.  Every time I get an infection, I am worried that it might quickly evolve into a life-or-death situation.

Buster

Title: Re: Buster 's Introduction
Post by DeborahW, Founder on 01/29/11 at 09:23:19

Buster,

Keep in mind that sometimes our local doctors are not actually knowledgeable enough, even though they think they are and we really like their personality. It is important to have that type of doctor because he is motivated to help you, but there really are only a handful of true mast cell disease researchers in the US. Who knows, yours could be one of them! However, if he is not, just always keep the ones in Boston as a backup in the back of your mind in the event that you don't get better in the coming months.

Title: Re: Buster 's Introduction
Post by Buster on 02/04/11 at 08:57:00

Well, my trial of Xyzal ended quickly with a migraine headache after just 3 doses of 2.5 mg over 36 hours.  However, I did feel quite a bit better during the first 6 hours after the initial dose, which does seem to indicate that histamine is responsible for some of my symptoms.  

I guess I will just have to use avoidance and natural treatments (e.g., supplements) to control my symptoms.

Title: Re: Buster 's Introduction
Post by mikev on 02/04/11 at 09:48:18

Buster:
I had my serotonin levels checked as well & they were on the low side but not below normal. I tried some 5-HTP regular but it made me so tired that I quit. I have some extended release waiting in my med cabinet but have not been bold enough to try. What do you take?
And what difference did it make?
By the way you might try zrytec, allegra or claratin before you give up on H1's
Mike V

Title: Re: Buster 's Introduction
Post by Buster on 02/04/11 at 11:09:50


mikev wrote on 02/04/11 at 09:48:18:
Buster:
I had my serotonin levels checked as well & they were on the low side but not below normal. I tried some 5-HTP regular but it made me so tired that I quit. I have some extended release waiting in my med cabinet but have not been bold enough to try. What do you take?
And what difference did it make?
By the way you might try zrytec, allegra or claratin before you give up on H1's
Mike V

Mike,

I take the 5-HTP several times a day, with the bulk of it at 8 pm and before I go to bed.  It helps me with insomnia, fatigue, anxiety, and depression. If 5-HTP makes you tired and you have none of the signs or symptoms associated with a serotonin deficiency, then your serotonin levels might be fine.  I also take tyrosine, which is another amino acid that is more energizing.

One doctor I saw told me that there is no correlation between blood and brain serotonin levels.

If you want to start taking 5-HTP again, I would suggest starting with a very low dose, perhaps 25 mg.  With 5-HTP, more is not better and most people take no more than 200 mg a day.  Also, some people have better results with tryptophan.

As to the other H1 antihistamines you suggested, I have not been able to take any medications on a long-term basis my whole life.  I also developed a migraine when I tried Zyrtec.  I am afraid that I am just too sensitive right now to be able to take any medications.  I can't even take thyroid medications now.

Buster

Title: Re: Buster 's Introduction
Post by mikev on 02/07/11 at 03:47:59

Buster:
Thanks for your response. I don't have any of those symptoms. Lisa at one time posted that neurological symptoms could come from low serontonin, so that why I was looking ino it.
Thanks
Mike V

Title: Re: Buster 's Introduction
Post by missybean on 02/18/11 at 04:42:51

Buster, Have you tried taking Armour for your thyroid? It's a natural thyroid med made from porcine thyroid glands. I know sounds gross but a lot of people who don't do well with synthetic thyroid hormones have had good luck with Armour. Some endocrinologist prescribe it and some prefer synthetics. But mostly naturopaths or osteopaths prefer this medicine.If your interested you can do your own research on line and see what people are saying about it.
http://www.armourthyroid.com/cons_aboutArmour.aspx  
http://www.healthboards.com/boards/showthread.php?t=548314&highlight=armour+versus+synthroid
http://www.associatedcontent.com/article/1458417/synthetic_vs_natural_thyroid_medication.html?cat=71
Melissa

Title: Re: Buster 's Introduction
Post by Riverwn on 02/21/11 at 01:59:34

"One doctor I saw told me that there is no correlation between blood and brain serotonin levels."
Totally untrue, sorry but this statement can hurt someone. I have low seritonin levels but didnt realize it until I tried doxepin and it thew me into a bad depression and gave me nightmares--Now people who do NOT have low seritonin levels really benefit from doxepin--it all depends :)

Im sorry to say that some doctors talk before they bother to find out the facts. Most doctors would never do that or say that.

Its a good thing for all of us to request Seritonin levels, prostaglandin levels and to watch for sensitivities to aspirin products,

I also want you to know that testing negative to food allergies is quite normal for us--your reaction to foods are "psuedo  allergies" or in other words a "trigger"--but it will react the exact same way a regular food allergy does and should be treated the same way.

Hope this helps some :)
Ramona

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