Now very severe HELP

[kurt]

@kurt, CIould you please share the name of the lab and the test. I am down to 10 foods myself. Thanks

Sorry to hear that Anna. Just search for 'ELISA-ACT'. This is a blood test, I believe it identifies food allergies that are due to leaky gut (food getting into the blood can cause a reaction, that is the theory). Have you also looked into histamine in foods? I found that many foods I reacted to were promoting histamine. The Body Ecology Diet was the only diet that worked for me, and I tried most of the fad diets at the time I went through this.

 

[MichaelK]

Hallo Martin...

What you describe reminds me of my worst CFS time, when I was reacting to most of the food I was trying to eat. A lab in the US tested me for leaky gut food allergies (lymphocyte reactions to 500+ foods) and their information helped stop the reactions. I don't know if the test is available in Germany, but I have sent you a message with some information, please look for that in your inbox above... You mention increase heart rate, and that is what also happened to me every time I ate a food I reacted to. Over time this can get very serious, I lost a lot of weight and the doctor did not think I would survive. But I changed my diet completely, starting with just two or three foods I could tolerate, and built back up from there. I hope you find some answers.

Hi Kurt,

I'm very thankful for your hint. Good to hear that you could get out of that horrible situation to a more stable one. Unfortunately Martin is still in a very severe condition, but some test results came in and they indicate some possible infections with viruses and bacteria. In addition the test results of the stool sample show some problems in the gut (possibly causing problems with histamines as some of you have already mentioned). There are still results coming in. I want to summarize everything and I will post an update the next days. I think I will need your input to understand a few things better.
@kurt could you send those information to me as Martin is still too weak to read. Thank you so much in advance!

 

[Lisa108]

Hi @MichaelK and @MartinDH!

The IMD Berlin also offers tests for detecting what is called type IV allergies to food. It is a LTT (lymphocyte transformation test). They recommend as a start one test panel that involves 25 possible allergens plus an extra test for nickel. They say that a type IV allergy to nickel is frequently found in "CFS" and eating foods high on nickel can lead to/ increase: leaky gut, rashes, myalgia, arthralgia! Never heard of that before, but I found some studies (older ones, though) that confirmed this.

IMD Berlin offers more panels than the "top 25" described above. You could also send in samples of food you suspect to be the culprits.
It ain't cheap, though.

Here's the link: http://www.imd-berlin.de/fachinform...ttelallergien-vom-typ-iv-labordiagnostik.html
In english: http://www.imd-berlin.de/en/subject...-of-cell-mediated-sensitisations-type-iv.html

I hope that, as the results come in, you and the docs will get a clear picture of what is going on with Martin and how to help him. Keeping my fingers crossed!

 

[kurt]

@kurt could you send those information to me as Martin is still too weak to read. Thank you so much in advance!

@MichaelK, check your Inbox, I added you to the conversation with MartinDH.

@Lisa, The Berlin test you mentioned sounds similar to what I was describing, but it is less comprehensive, only measuring IgE reactions of antibodies, I did not read that entire website, but that looks like a traditional food allergy test. Which would be useful if there are clear allergy signs in Martin. The test I used measures IgA, IgM, and IgG reactions in the lymphocytes, which can react without traditional allergy signs.

 

[Lisa108]

@kurt, as I get it, it's testing IgE-independent intolerance reactions (type IV allergies, aka delayed type allergies). It's not about antibodies. The LTT (lymphocyte transformation test) detects antigen-specific lymphocytes.

You send in a blood sample. The lymphocytes are extracted, put into a nutrient solution and the allergen is added. This mixture is cultivated for some days. Then a radioactive substance is added. After some hours the mixture is tested for the intake of the radioactive substance, and a stimulation index is generated. The higher the stimulation index, the higher is the reaction to the allergen.
If you go back to the link there are two figures where you can see the allergens tested (e.g. fish, cow's milk) and to the right the SI, stimulation index.
Hope I got that right.

 

[Lisa108]

From my own personal experience I can say that the team of IMD Berlin is really easily accessable, via email or phone. I got competent and cromprehensible replies, even from Dr. von Baer himself, the founder of the institute. Some may know him as one of the co-authors of the 2014 Charité-Study:
Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome
(http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0085387)
[This is not meant as advertising. There are certainly more labs in Germany doing good work. But can recommend this one.]

 

[Lisa108]

Hi @MichaelK and @MartinDH! Hope things improved in the meantime... Kind regards!

 

[MichaelK]

Hi @MichaelK and @MartinDH! Hope things improved in the meantime... Kind regards!

Unfortunately no. Perhaps you can say that there is a stabilisation on a very bad level. We are still doing some testings. The common infections with viruses and bacteria are negativ. But there are still a few left. Currently we are mainly focusing on his gut issues (lactobacillus/bifido were not there anymore) next to the testing. I am feeding his doc with information that you and other sources are giving me. In addition we are trying to build up a group of people around his doc who help us in certain areas. If you know somebody in germany Martins doc can talk to to have a transfer of know-how, I would be very glad if you help me to connect them.

*Edit* Martin asks me to post the following:

"I am crashing again and again due to trivialities, such as bowel movement/defecation or a short conversation. Has anyone had similar experiences? Is there still hope for improvement? I can't do even less, because apart from eating and drinking, I do nothing but lie in bed."

 

[Sundancer]

Germany eh...
professor Scheibenbogen in the charite Berlin, when she does not have time she maybe able to refer to someone else who is reliable

 

[MEPatient345]

Tell Martin there is hope for improvement.. I spent a long few months in a dark room only whispering communications with my family. Now I am still housebound but move around house and don’t have problems with communication. I didn’t find any magic treatment to help — just time and rest, avoiding stimulation. I didn’t do any doctors appointments in that time as it would have been too much. Also, while he is like this, be careful in introducing any new medications that could cause him to worsen. I tried fludrocortisone that really set me back.

I am so sorry he is going through all this and glad you are looking after him Michael.

 

[Dechi]

I don’t have any advice but just wanted to say I am deeply sorry you are having such a hard time, @MartinDH. I will be thinking of you and hoping for a quick recovery. Sending you a virtual, gentle hug.

 

[Lisa108]

Oh boy... so sorry to hear! Unfortunately, I cannot recommend any doctor in Germany. Prof. Scheibenbogen came to my mind, too, but I don't have personal experience with her/ her team. BUT I heard elsewhere that they are willing to consult with your GP via phone .. so maybe that would be a start.

Like all the others I will be thinking of you (Martin, Michael, family and friends) and hoping for a quick but lasting fix!
Kind regards!

 

[MichaelK]

Thank you all. We have already contacted Prof. Scheibenbogen and she told us that it is possible to discuss some issues with Martins doc. But on top it would be great to have other experts, too. All these people have limited time of course and perhaps we can activate other experts to get involved and spend time to get to know CFS.

@Silencio I am glad that your situation improved. I hope that Martins condition will improve soon. I can't imagine how it is like to lie in bed 24/7 with limited communication.

 

[MichaelK]

Martins condition still haven't improved. We startet with LDN yesterday.

All test results were negative except his problem with the gut (low/no lactobacillus and bifido), high GPT and some lymphozytes are slighly to high/to low. We also tested for histamine in the blood and the DAO activity. The results didn't show that there is a problem. Can there still be a problem with MCAS although the results were negative? If yes: I think we can't do the normal testing procedure with Martin, so would you recommend antihistamines and stabilizer only to look how it works?

One last question for all and especially for @Silencio : if you have such a bad crash/condition, does the whole situation normally improve slightly or in a very short periode of time ?

Again thank you all. If you have any suggestions what we can test/do, please tell me. It's a huge problem to get specialists in germany. Independently of one another a few people told me that Prof. Scheibenbogen in Berlin is the only one who could really help. But we are still trying to get help from others, but multiple problems occured while doing this.

 

[MEPatient345]

@MichaelK I was never as bad as Martin — I could always make it to the bathroom and back multiple times a day and sit half up to eat, even though I was suffering a lot. It took 2 years very slowly to be able to sit upright in a chair with feet down for longer, spend more time on couch out of bed and tolerate being around people sometimes. It’s very slow and you have to just accept this is it for a long while.
@Cheesus and @Countrygirl.. do either of us have further advice on how long it took you to get out of the worst?

There’s a very fine line which the patient has to figure out how much they can do beneficially, without making yourself worse.. i spent months never pushing, only resting, and being horizontal. Orthostatic intolerance worsens from being horizontal always, so, there is a danger in not moving too. Eventually, I was able to be half upright in bed longer, and then, I could walk around the upstairs of our house for 30 seconds to a minute a few times a day, and I would lay down as soon as I felt the weakness / heart racing. But gradually I was able to build that up and I started to make improvements. 3 years later, on good days, I can stand or walk for about 3 to 5 minutes before my POTS kicks in. I use a Fitbit to monitor my heart rate when doing this. But, a very severe patient must be super careful and it doesn’t sound like Martin is at that point at all yet. If he is able to, while lying in bed, flex and relax each muscle in arms and legs, tighten and release his abs, doing that even a few times can help keep muscles active. Only if he is able, this might not be yet.

I don’t know anything about MCAS, but I personally cannot tolerate antihistamines. It may be worth trying a small dose of them to see if they help him.

Be careful with LDN.. it made me sicker and very depressed, while I was in that bad spell. I was only taking a tiny dose, maybe .125mg to .25.
Can you access nutritional IVs to come to the house? Maybe the fluids and nutrients would help him. Must be balanced w sensory stimulation from interacting w people and if it is worth that.

 

[Learner1]

Martins condition still haven't improved. We startet with LDN yesterday.

I am so sorry to hear this. Hopefully the LDN will help a little bit. 4.5mg is a standard dose, though some people start much lower.

All test results were negative except his problem with the gut (low/no lactobacillus and bifido), high GPT and some lymphozytes are slighly to high/to low.

Were PCR tests done or just antibodies?

I have had times with no lacto and virus I, noth after chemotherapy and after antibiotics. After months of working it with many products, I came to a combination that worked - Xymogen ProBioMax 350 and Klaire Labs Galactoimmune (galactooligosaccharides to feed the lscto and bifido) and Thorne FiberMend.

Is a fecal transplant an option there? That might help since Martin is so sick.

We also tested for histamine in the blood and the DAO activity. The results didn't show that there is a problem. Can there still be a problem with MCAS although the results were negative?

Histamine may be totally normal even with full blown MCAS. You need to test Chromagranin A and Prostaglandin D2. They are blood tests. Also tryptase within 3 hours of a reaction.

If yes: I think we can't do the normal testing procedure with Martin, so would you recommend antihistamines and stabilizer only to look how it works?

Treatment is usually a combination of things. See the attached which explains thecusecof these:

Claritin or Allegra
Benadryl
Ketotifen
Zantac
Cromolyn sodium (oral)
Quercetin
Curcumin

One last question for all and especially for @Silencio : if you have such a bad crash/condition, does the whole situation normally improve slightly or in a very short periode of time ?

Again thank you all. If you have any suggestions what we can test/do, please tell me. It's a huge problem to get specialists in germany. Independently of one another a few people told me that Prof. Scheibenbogen in Berlin is the only one who could really help. But we are still trying to get help from others, but multiple problems occured while doing this.

Ask them about nutrient support, especially B vitamins, glutathione, magnesium, and amino acids. It is very easy to become depleted and make a it so much harder to improve as biochemistry becomes compromised. They can be given IV if the gut is not assimilating them.

 

[MichaelK]

I am so sorry to hear this. Hopefully the LDN will help a little bit. 4.5mg is a standard dose, though some people start much lower.

We start with 1.0mg and we will document the dosage and changes every day to get a feeling for the right dosis.

Were PCR tests done or just antibodies?

Mainly antibodies. Martins doc will discuss that with Prof. Scheibenbogen.

I have had times with no lacto and virus I, noth after chemotherapy and after antibiotics. After months of working it with many products, I came to a combination that worked - Xymogen ProBioMax 350 and Klaire Labs Galactoimmune (galactooligosaccharides to feed the lscto and bifido) and Thorne FiberMend.

Is a fecal transplant an option there? That might help since Martin is so sick.

Side fact: The import of Thorne is partly blocked by customs in germany. We can't figure out how to deal with that.

In the current condition a fecal transplantation is a very difficult alternative, I think. We want to keep him out of hospital as long as possible with regards to sensory stimulation. But if it is necessary then a transplantation could be an option.

Histamine may be totally normal even with full blown MCAS. You need to test Chromagranin A and Prostaglandin D2. They are blood tests. Also tryptase within 3 hours of a reaction.

Thanks for the confirmation. The problem is the lack of CFS-specialists and they are very fast to exclude certain things. Same happenend with MCAS. I will take your hints and talk to Martins doc.

Ask them about nutrient support, especially B vitamins, glutathione, magnesium, and amino acids. It is very easy to become depleted and make a it so much harder to improve as biochemistry becomes compromised. They can be given IV if the gut is not assimilating them.

also as a response for @Silencio : The test results haven't shown any depletion of supplements, but if Martins condition won't improve it will become a problem I think. 2 months ago they told us that nutritient support is difficult/not possible at home due to whatever reason. Will discuss that again.

 

[MichaelK]

@MichaelK I was never as bad as Martin — I could always make it to the bathroom and back multiple times a day and sit half up to eat, even though I was suffering a lot. It took 2 years very slowly to be able to sit upright in a chair with feet down for longer, spend more time on couch out of bed and tolerate being around people sometimes. It’s very slow and you have to just accept this is it for a long while.
@Cheesus and @Countrygirl.. do either of us have further advice on how long it took you to get out of the worst?

There’s a very fine line which the patient has to figure out how much they can do beneficially, without making yourself worse.. i spent months never pushing, only resting, and being horizontal. Orthostatic intolerance worsens from being horizontal always, so, there is a danger in not moving too. Eventually, I was able to be half upright in bed longer, and then, I could walk around the upstairs of our house for 30 seconds to a minute a few times a day, and I would lay down as soon as I felt the weakness / heart racing. But gradually I was able to build that up and I started to make improvements. 3 years later, on good days, I can stand or walk for about 3 to 5 minutes before my POTS kicks in. I use a Fitbit to monitor my heart rate when doing this. But, a very severe patient must be super careful and it doesn’t sound like Martin is at that point at all yet. If he is able to, while lying in bed, flex and relax each muscle in arms and legs, tighten and release his abs, doing that even a few times can help keep muscles active. Only if he is able, this might not be yet.

Finally it is important that there will be an improvement (almost) regardless of the timeline. I hope that your situation will continue to improve. It's hard to accept that there is a possibility that improvements can take years.

 

[Sundancer]

Side fact: The import of Thorne is partly blocked by customs in germany. We can't figure out how to deal with that.

I live in Holland and can easily buy thorneproducts at iherb. Then send it through to you if you want.

further I hardly dare to suggest things here but I know that when my histamineissues flare up I always take bifido infantus to dampen it down.

of course these issues are much smaller compared to what Martin is dealing with but still. I buy a very clean supplement in Belgium

 

[NotThisGuy]

@MichaelK you cant import any supplements into germany that come from outside of europe.
its not just thorne.
but you can look online for EU-shops that sell the supplements you want. There will be absolute no problem with customs.

Looking up a few shops is almost always worth the effort when prices seem to be too high.