Do any of these blood results reveal anything (my GP shrugs her shoulders)?

SWAlexander

Senior Member
Messages
583
Likes
1,370
You might at least repeat the Complete Blood Count to see if the % of neutrophils and lymphocytes normalizes in relation to each other. If they don't, it would be wise to be persistent about cancer surveillance.

Hopefully you are on a blood thinner? Are you on an immunosuppressant, which could be causing some of these results?

I saw you were tested for cytomegalovirus, the IgG looked high. Have you also been tested for other herpes viruses, like Epstein Barr and HHV6?
 

SWAlexander

Senior Member
Messages
583
Likes
1,370
Yes, I am on a blood thinner. I have posted more lab papers. Here is a picture how I look since Feb. My skin feels like a wet sponge as if the layers going to separate.
 

Learner1

Senior Member
Messages
5,904
Likes
10,712
Location
Pacific Northwest
Hi Learner, my understanding about the neutrophil / lymphocyte ratio is that is prognostic of cancer outcome inside of a cancer diagnosis, not that it is indicative of a possible cancer on its own. I just don't want to scare anyone unnecessarily.
Agreed, and the quote I provided clearly said there are other factors which can lead to much a ratio.

But, looking at this person's age and constellation of existing problems, it would be prudent to be thoughtful about looking into the possibility. The cost of missing a diagnosis can be quite high. This member was expressing concern about odd blood results so this is not unexpected. Obviously, the best outcome would be to find one is cancer-free.

About 1/3 of Americans will get cancer at some point in their lives - I don't know the statistics for Germany, but it is not rare and probability increases over age 50. It is not unknown in ME/CFS patients - a friend with it recently was found to have stage 4 cancer, and passed away 3 months later. I was in the best shape of my life, doing everything right when my ovary ruptured, revealing a slow growing cancer that bad been missed for a few years. The treatment for this stage 3 cancer triggered my ME/CFS - I sure wish it had been found at an easier to treat stage 1.

I am certainly not a doctor, just one whose learned a lot the hard way. The long and short of it is that this person should be discussing the results with doctors who can understand and properly interpret these lab results.
 

SWAlexander

Senior Member
Messages
583
Likes
1,370
I am very sorry to learn of your symptoms, labs, and your very valid distress. Please be persistent in pursuing medical help.

Best wishes...:hug:
You are very kind, thank you. Doctors feel overwhelmed by my medical history. In the US I couldn´t get any answers. I am in Germany since 2019 and have consulted 7 neurologists and 1 oncologist but I can't get a ME/CFS diagnosis.
 
Last edited:

Hip

Senior Member
Messages
16,439
Likes
35,450
- I'm in the UK, are there are any recommended drs? Or what type of Dr would be best to see? I found Dr Weir in London who is a Consultant in Infectious Disease and specialises in ME. Would that be a good route?
If you are looking for a doctor who will spend many hours investigating all the nooks and crannies of your ME/CFS health picture, in the hope of finding something which might be treated with some experimental therapies, to speculatively see if it improves your health, unfortunately that is not usually the sort of service you will get from the NHS.

The NHS doctors are just on the lookout for standard diseases and conditions which fit an established pattern, and for which there are standard treatments. The cause of ME/CFS is unknown, and there are more or less no treatments which have been proven to help ME/CFS in a consistent way, that's why the NHS does not offer much for ME/CFS patients.

That being said, some lucky ME/CFS patients do obtain major improvements from certain treatments, but usually a treatment which works for one ME/CFS patient will not work for the next. With ME/CFS treatments, it is usually a case of trial and error, trying lots of therapies, and seeing if any might help.

A lot of patients try treatments on their own, without much assistance from their doctor. Some of the treatments which may be worth trying are detailed in my roadmap document.

There aren't really many doctors in the UK who are prepared to offer experimental treatments to ME/CFS patients. Dr William Weir understands ME/CFS well, but I have not heard of him offering many experimental treatments.

Dr Kenny De Meirleir in Brussels is perhaps the nearest ME/CFS doctor who is prepared to try treatments speculatively, on a trial and error basis.

But many ME/CFS patients have spent thousands on private doctors, and still not improved their health.

A global map of ME/CFS doctors is found here.



I can't get a ME/CFS diagnosis.
If you satisfy the IOM diagnostic criteria for ME/CFS, or the more precise and stricter Canadian consensus criteria, then that is sufficient for an ME/CFS diagnosis, provided you do not have any other illnesses which might explain your fatigue and other ME/CFS symptoms.
 
Messages
17
Likes
23
If you are looking for a doctor who will spend many hours investigating all the nooks and crannies of your ME/CFS health picture, in the hope of finding something which might be treated with some experimental therapies, to speculatively see if it improves your health, unfortunately that is not usually the sort of service you will get from the NHS.

The NHS doctors are just on the lookout for standard diseases and conditions which fit an established pattern, and for which there are standard treatments. The cause of ME/CFS is unknown, and there are more or less no treatments which have been proven to help ME/CFS in a consistent way, that's why the NHS does not offer much for ME/CFS patients.

That being said, some lucky ME/CFS patients do obtain major improvements from certain treatments, but usually a treatment which works for one ME/CFS patient will not work for the next. With ME/CFS treatments, it is usually a case of trial and error, trying lots of therapies, and seeing if any might help.

A lot of patients try treatments on their own, without much assistance from their doctor. Some of the treatments which may be worth trying are detailed in my roadmap document.

There aren't really many doctors in the UK who are prepared to offer experimental treatments to ME/CFS patients. Dr William Weir understands ME/CFS well, but I have not heard of him offering many experimental treatments.

Dr Kenny De Meirleir in Brussels is perhaps the nearest ME/CFS doctor who is prepared to try treatments speculatively, on a trial and error basis.

But many ME/CFS patients have spent thousands on private doctors, and still not improved their health.

A global map of ME/CFS doctors is found here.
Thanks @Hip Your roadmap is very useful. I'm unfortunately very familiar with the general ineptness of NHS Drs in this area. I appreciate your point that going down the functional Dr route is not a definite road to success and may be just wasted money as many have not improved. However I'm assuming there are also many that have improved via Functional Drs etc.
 

Hip

Senior Member
Messages
16,439
Likes
35,450
Thanks @Hip Your roadmap is very useful. I'm unfortunately very familiar with the general ineptness of NHS Drs in this area. I appreciate your point that going down the functional Dr route is not a definite road to success and may be just wasted money as many have not improved. However I'm assuming there are also many that have improved via Functional Drs etc.
Functional medicine (or ecological medicine as we call it in the UK) really follows the law of diminishing returns.

I suspect you may obtain health benefits that you may not get from a regular doctor, but the time and money involved may be quite high in comparison to the benefits gained.


However, I expect you may get much more attention to detail from a functional doctor, so this can be an advantage if you are looking to explore all angles of your health, to try to identify areas where improvements can be obtained.

I have never seen any studies investigating the differences in health outcomes between patients treated by functional doctors versus regular doctors, so it's hard to gauge the efficacy of the functional approach.



My own approach to treating ME/CFS is kind of on functional lines though. I tend to throw everything at my illness but the kitchen sink, in the hope of finding things that might work. I have had several successes, which have improved my ME/CFS, and also improved the comorbid mental health issues I have, like depression, generalized anxiety disorder and others.

But it's taken me many, many years of constant self experimentation to discover these treatments which improved my health, and they were only really discovered by blind chance, rather than by any scientific method.
 
Last edited by a moderator:

SWAlexander

Senior Member
Messages
583
Likes
1,370
"I tend to throw everything at my illness but the kitchen sink, in the hope of finding things that might work."

This is exactly what I did and still do. ;)
I ended up going from 5 mg Prednison to 10 mg, Night-time antihistamine, vitamin D, and for the skin condition and psoriasis Calcipotriene 50 mikro +0.5 mh/g a Vitamin D3-Derivate.
Everything else had too many side effects. Once a week I go for a soft medical back massage with a hot pad.
 

Shanti1

Senior Member
Messages
323
Likes
1,141
I figured out how to pop your labs into a new window and blow them up so I could see them. I didn't recognize everything, but made some comments below on the items that were elevated that I did recognize:

D-Dimer- Elevation is indicative of a blood clot- which you mentioned you had in the left leg
vWBF (Von Willibrans Factor)- elevation is likely related to the clot or general inflammation
INR- in normal range, but what blood thinner are you on? The target for warfarin is usually 2.5.
Card-AK IgM and glyco-Ak IgM-(Cardiolipin antibodies and glycoprotien antibodies)- both of these antibodies can cause clotting. They are also often elevated in Lupus and are predictive of a clot. They can also be elevated in response to infection and I see now that your neutrophil count (not just the neutrophil percentage) was elevated, along with your WBC, but I think they are related to the lupus. https://www.hopkinslupus.org/lupus-tests/antiphospholipid-antibodies/
MixCON, dRVVT, and Alpha2 Anti-Plasmin antibodies- Also elevated in lupus, increases risk for clotting. Seems they were trying to determine if your clot was related to lupus.....
Homocysteine- this is a cardiovascular risk factor and indicator of B12, folate, and methylation status (your low folic acid could explain it)
CRP- general marker for inflammation in the body, with everything going on, nos surprising it is somewhat elevated.
Surprisingly your ANA antibody and ds-DNA antibody didn't show up elevated on this test as you would expect with lupus, I do not know why
Folate (folsaure) was low, this could be the reason your homocysteine is high as you need folic acid and B12 to process homocysteine in the body. Consider taking methylfolate-start at a low dose and work up slowly to make sure you tolerate it.
Gamma-globulin- these are primarily your antibodies, hard to say specifically why they are low as there is so much going on with your immune system
WBC and neutrophil count are high- this is typically indicative of a bacterial infection, but needs to be correlated with symptoms, especially since you have a lot going on with your immune system. If you had just started on prednisone or increased your dose, that can also cause a transitory increase in WBC and neutrophils for about two weeks.
Cortisol- You mention that your cortisol is low, fluctuating between 1.1-5.4- If you are taking prednisone, it will suppress your own cortisol production and it is expected that you will test low. I think though that you mentioned it was low before the prednisone and part of the reason for taking prednisone was a cortisol replacement.
Thankfully, your liver, kidney, blood sugar, and thyroid look good.

CMV IgG- Titers were quite high, could be a target for antiviral therapy
HSV1- The test indicates that you have antibodies, but doesn't say how high they are. If you can get it, consider getting a quantitative HSV1 antibody test.
HSV2- The test indicates that you have antibodies, but doesn't say how high they are. If you can get it, consider getting a quantitative HSV1 antibody test.

I'm guessing you may know much of what I wrote above, but I hope you found something useful.
 

SWAlexander

Senior Member
Messages
583
Likes
1,370
I figured out how to pop your labs into a new window and blow them up so I could see them. I didn't recognize everything, but made some comments below on the items that were elevated that I did recognize:

D-Dimer- Elevation is indicative of a blood clot- which you mentioned you had in the left leg
vWBF (Von Willibrans Factor)- elevation is likely related to the clot or general inflammation
INR- in normal range, but what blood thinner are you on? The target for warfarin is usually 2.5.
Card-AK IgM and glyco-Ak IgM-(Cardiolipin antibodies and glycoprotien antibodies)- both of these antibodies can cause clotting. They are also often elevated in Lupus and are predictive of a clot. They can also be elevated in response to infection and I see now that your neutrophil count (not just the neutrophil percentage) was elevated, along with your WBC, but I think they are related to the lupus. https://www.hopkinslupus.org/lupus-tests/antiphospholipid-antibodies/
MixCON, dRVVT, and Alpha2 Anti-Plasmin antibodies- Also elevated in lupus, increases risk for clotting. Seems they were trying to determine if your clot was related to lupus.....
Homocysteine- this is a cardiovascular risk factor and indicator of B12, folate, and methylation status (your low folic acid could explain it)
CRP- general marker for inflammation in the body, with everything going on, nos surprising it is somewhat elevated.
Surprisingly your ANA antibody and ds-DNA antibody didn't show up elevated on this test as you would expect with lupus, I do not know why
Folate (folsaure) was low, this could be the reason your homocysteine is high as you need folic acid and B12 to process homocysteine in the body. Consider taking methylfolate-start at a low dose and work up slowly to make sure you tolerate it.
Gamma-globulin- these are primarily your antibodies, hard to say specifically why they are low as there is so much going on with your immune system
WBC and neutrophil count are high- this is typically indicative of a bacterial infection, but needs to be correlated with symptoms, especially since you have a lot going on with your immune system. If you had just started on prednisone or increased your dose, that can also cause a transitory increase in WBC and neutrophils for about two weeks.
Cortisol- You mention that your cortisol is low, fluctuating between 1.1-5.4- If you are taking prednisone, it will suppress your own cortisol production and it is expected that you will test low. I think though that you mentioned it was low before the prednisone and part of the reason for taking prednisone was a cortisol replacement.
Thankfully, your liver, kidney, blood sugar, and thyroid look good.

CMV IgG- Titers were quite high, could be a target for antiviral therapy
HSV1- The test indicates that you have antibodies, but doesn't say how high they are. If you can get it, consider getting a quantitative HSV1 antibody test.
HSV2- The test indicates that you have antibodies, but doesn't say how high they are. If you can get it, consider getting a quantitative HSV1 antibody test.

I'm guessing you may know much of what I wrote above, but I hope you found something useful.
I´m very grateful to you because most of my symptoms make sense.
Inflammation – Psoriasis since the age of 11. I have also ankylosing spondylitis. Could there be a relationship between Tarlov cysts (MRI confirmed) and ankylosing spondylitis? MRI confirmed.
Low Cortisol was diagnosed at age 30.

I have attached DNA - IL and MTHFR that could be one other explanation.
 

Learner1

Senior Member
Messages
5,904
Likes
10,712
Location
Pacific Northwest
@SWAlexander I'm not convinced an ME/CFS diagnosis would be useful as there is no treatment associated with it. However, you seem to have a plethora of other diagnoses to work at.

One angle you don't seem to have covered is functional medicine. A good functional medicine doctor or Bastyr-trained naturopathic doctor may be able to look at you from the point of view of a system of interconnected systems and perhaps connect a few dots that have been missed to improve your symptoms.

It would also be prudent to have a good hematologist, an immunologist, and possibly an infectious disease doc or rheumatologist. Treating your tendency to clots, the CMV, your low immune function, and Addison's would all be helpful.
However, I expect you may get much more attention to detail from a functional doctor, so this can be an advantage if you are looking to explore all angles of your health, to try to identify areas where improvements can be obtained.
This document has a good description of what it is and why it was developed.
 

Attachments

Last edited by a moderator:

Hip

Senior Member
Messages
16,439
Likes
35,450
Functional Medicine is not pseudoscience.
If you search Google for functional medicine pseudoscience, you will find articles claiming that it is.

I think certain statements from functional doctors are dubious. For example, functional doctor's claim that they treat the root causes of disease cannot really be scientific, as we do not know the root causes of most diseases, so how then can you possibly treat the root cause? We do not know the root cause of ME/CFS, for example, or fibromyalgia, arthritis, autoimmunity, diabetes, etc.

Here is one functional medicine doctor's website in the UK, which says:
Functional Medicine offers a holistic, patient-centred approach to address the root causes of disease.
That's clearly a statement that is not tenable scientifically, as we do not know what the root causes are.

But I understand what these functional doctors are trying to say: what they basically do is try to improve the health of the patient in general, for example, improving their gut health, or improving their nutritional status. Then they hope or keep their fingers crossed that these general improvements will have some positive impact on the patient's actually disease. And that's reasonable, I think.

But they still do not know what the root cause of disease is, in spite of claiming they treat the root cause.
 
Last edited:

SWAlexander

Senior Member
Messages
583
Likes
1,370
@SWAlexander I'm not convinced an ME/CFS diagnosis would be useful as there is no treatment associated with it. However, you seem to have a plethora of other diagnoses to work at.

One angle you don't seem to have covered is functional medicine. A good functional medicine doctor or Bastyr-trained naturopathic doctor may be able to look at you from the point of view of a system of interconnected systems and perhaps connect a few dots that have been missed to improve your symptoms.

It would also be prudent to have a good hematologist, an immunologist, and possibly an infectious disease doc or rheumatologist. Treating your tendency to clots, the CMV, your low immune function, and Addison's would all be helpful.

Functional Medicine is not pseudoscience. This document has a good description of what it is and why it was developed.
I´m not so sure about "The Institute for Functional Medicine 4411 Pt Fosdick Dr NW, Ste 305 Gig Harbor, WA 98335". There is nothing on google Maps, nor could I find anything in the WA phone book. My friend works nearby at Costco Wholesale, drove by this address and found only NW Sports Physical Therapy and Re/Max Northwest Realtors | Gig Harbor WA but "305" shows up as a non-existing place. Is there a different address now?
 

SWAlexander

Senior Member
Messages
583
Likes
1,370
You might at least repeat the Complete Blood Count to see if the % of neutrophils and lymphocytes normalizes in relation to each other. If they don't, it would be wise to be persistent about cancer surveillance.

Hopefully you are on a blood thinner? Are you on an immunosuppressant, which could be causing some of these results?

I saw you were tested for cytomegalovirus, the IgG looked high. Have you also been tested for other herpes viruses, like Epstein Barr and HHV6?
Thanks: No I have not been tested for Epstein Barr and HHV6. Still waiting for the hospital to call.
 

Learner1

Senior Member
Messages
5,904
Likes
10,712
Location
Pacific Northwest
I´m not so sure about "The Institute for Functional Medicine 4411 Pt Fosdick Dr NW, Ste 305 Gig Harbor, WA 98335". There is nothing on google Maps, nor could I find anything in the WA phone book. My friend works nearby at Costco Wholesale, drove by this address and found only NW Sports Physical Therapy and Re/Max Northwest Realtors | Gig Harbor WA but "305" shows up as a non-existing place. Is there a different address now?
They may have moved since I downloaded that paper. It is a legitimate organization:

https://www.ifm.org/about/
 
Last edited by a moderator:

Shanti1

Senior Member
Messages
323
Likes
1,141
I´m very grateful to you because most of my symptoms make sense.
Inflammation – Psoriasis since the age of 11. I have also ankylosing spondylitis. Could there be a relationship between Tarlov cysts (MRI confirmed) and ankylosing spondylitis? MRI confirmed.
I didn't see any relationship Tarlov cysts and ankylosing spondylitis in the literature. The two attachments on your last post with me are of the same document, did you mean to upload two different documents?
The MTHFR SNP on that sheet is one of many MTHFR SNPs, but not the most impactful. If you have 23andMe results, the most useful tool I know of for determining MTHFR status and Methylation genetics in general is Genetic Genie: https://geneticgenie.org/.
 

SWAlexander

Senior Member
Messages
583
Likes
1,370
I didn't see any relationship Tarlov cysts and ankylosing spondylitis in the literature. The two attachments on your last post with me are of the same document, did you mean to upload two different documents?
The MTHFR SNP on that sheet is one of many MTHFR SNPs, but not the most impactful. If you have 23andMe results, the most useful tool I know of for determining MTHFR status and Methylation genetics in general is Genetic Genie: https://geneticgenie.org/.
Thanks for the link and yes I made a label mistake when I saved the IL PDF. I´ll check it again.
 
Messages
3,700
Likes
4,428
Location
Vermont, school in Western MA
Consistent with either classic allergy problems or mcas. It means you should test to rule out regular ige allergies and if those come back negative or even if a few come back positive (bc u can have mcas and allergies ), you should test for more mcas tests: tryptase, histamine, prostaglandins, and more (you can look for full list of mcas tests somewhere on this site probably or an mcas site. ). High IgE, especially if it appears more than once and isnt fluke, is definitely meaningful.