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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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see PCP this Friday.....testing questions

SOC

Senior Member
Messages
7,849
It comes down to finding a doctor that understands but Dr L is the only one mentioned, he is not a CFS/ME specialist. How does one find a ME/CS specialist in the USA? I have been studying a lot but still no closer to finding a doctor I feel gets it. Now going to try lyme doctor because finally it looks like that maybe what I have been fighting gor 10 years. Once I had an idea it was lyme I reserached sought lyme doctors (another difficult path) and found 3 that I felt I could possible drive to see. All had 6-8 month wait. I asked to be added as a patient to Dr C in Misourri and Dr L in Indiana. I exlcluded the doctor in WI due to 7+ hr one way trip and he also had long wait list.

There are a handful of top ME/CFS docs who also have a broader range of treatments available. Even so, they don't all cover everything. But seeing a top specialist and getting a big chunk of your symptoms under control is an excellent first step. If you need to change specialists later to address other things, you can do that.

If I were in your shoes, I'd look into seeing Drs Klimas/Rey (I think they have a new doc coming online who might not have a patient backlog yet), Dr Enlander, Dr Kogelnik, or Dr deMeirleir. I know I've forgotten some. No doubt other people will chime in with some others.

Of course, if you do have chronic Lyme, then a LLMD would be a good place to start.

Since you have an appt with your PCP tomorrow, I'd suggest taking a full copy of the ME/CFS Primer for Clinical Practioners and show her Section 5:8 Management of Related Conditions to see if you can get some symptomatic treatment for some of the (somewhat) easier to understand symptoms. You can also show her 5:2 Sleep, and 5:3 Pain, if those are problems for you. Don't expect her to read it all though. Frankly, I have a hard time getting mine to read even a paragraph of anything I bring in, but it sometimes helps in getting a referral.
 

SOC

Senior Member
Messages
7,849
@SOC, what made you goto Dr L? Did you have a test that indicated you had virals or was it your intuition? If Dr L is specalized and not really a CFS/ME specialist did you end up finding a CFS/ME specialist?
My uncle was cured, as in he no longer has ME/CFS symptoms and takes no meds for it, by Dr Lerner. Also Dr Lerner was the only top ME/CFS specialist within driving distance.

I thought I did not have viral infections because all my docs told me my tests only showed a past infection, nothing current. (They were wrong.) When my daughter got very ill, we decided we couldn't piddle around with local docs anymore since they weren't doing me any good, so we went to see Dr Lerner. We were both significantly better within 6 months.

Dr Lerner is an ME/CFS specialist. His background is as an Infectious Disease specialist. His repertoire of treatments is more limited than other specialists, imo. In particular, he doesn't do anything about immune problems, testing or treatment. Or he didn't when I last saw him, anyway.

We see Dr Rey now.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Thank you @SOC. I have a copy of the ME/CFS Primer and will give her a copy and point out the section you mentioned. I will look into those doctors you mentioned. I do recall them being mentioned I guess lately I have been so focused on getting the Lyme thing pinned down I forgot about these other docs. Thank you so much for you responses. My mind is not as stong as my 'old' self so I tend to go in so many directions, unorganized. I use to be so mentally organized.:eek:
 

SOC

Senior Member
Messages
7,849
Thank you @SOC. I have a copy of the ME/CFS Primer and will give her a copy and point out the section you mentioned. I will look into those doctors you mentioned. I do recall them being mentioned I guess lately I have been so focused on getting the Lyme thing pinned down I forgot about these other docs. Thank you so much for you responses. My mind is not as stong as my 'old' self so I tend to go in so many directions, unorganized. I use to be so mentally organized.:eek:
I know what you mean. Daughter and I both notice how much harder it is to be mentally organized since ME/CFS hit.

Don't forget we have a subforum about doctors here at PR. You might find some more doctors to consider there.
 

Valentijn

Senior Member
Messages
15,786
@roxie60 - Vacutainers look like they're the same around the world. So that shouldn't be problem.

Do you mean mycoplasma fermentans? I don't see anything on google regarding chlamydia fermentans.

I'd go with the LTT test over the igenex. Typical ways of measuring Lyme infection can take a very very long time after improvement to show any change. Whereas LTT is supposed to be better at that, from what I recall.

LTT probably isn't accepted by the CDC. It's a relatively new test (though validated in studies), and CDC prefers to maintain as much denial as possible when it comes to certain disease.

I don't know what got marked on my form. It probably didn't say to send them to the patient, which would explain why I couldn't get the results from them directly. If it says they can release it to you, then I'm sure they will.

When choosing tests, I think the most important aspect is too look for potential underlying or causative infections. So
1) can that infection cause your symptoms?
2) can that infection become chronic?
3) could you have realistically been exposed to that infection?
4) will a positive result for that test be helpful for selecting treatment?
5) will a positive result be helpful for proving disability or illness?
6) has it been shown to be a problem for some other ME/CFS patients?

IgG results will prove absolutely nothing to people assessing disability. Insurance companies and many practitioners will simply interpret even an extreme result as being a past infection and immunity against future infection.

Toxoplasmosis probably can't cause immune dysfunction - in certain countries, something like 50% of the population has had it at some point, but only have problems if there's already immune dysfunction present. Hence it might be an opportunistic infection, but is unlikely to be causitive. And if your cat is an indoor one, it probably wouldn't have it, and you not eating undercooked meats would also make you very unlikely to get it.

Lyme is definitely a suspect in your part of the world, especially with you testing at least partly positive. Hence it makes sense to test LTT Lyme, and co-infections.

HSV is Herpes Simplex Virus 1 & 2. Not the same as HHV or any of the other Herpes viruses. Most people have had at least one these, so they're unlikely to be causative and more likely to be an opportunisitic flare-up. But again, an insurance company would likely dismiss elevated IgG, so not too interesting.

It sounds like chlamydia pneumonia would typically involve respiratory symptoms, and chlamydia trachomatis would typically involves sores at the site of infection (usually genitals) or pelvic inflammatory disease. Again, both of those seem somewhat unlikely.

So basically I think it makes the most sense to focus on Borrelia and its co-infections, out of the options listed. Hard to say if that will prove disability though - the best bet for that is probably a CPET, the two-day one if you're relatively functional.
 

Valentijn

Senior Member
Messages
15,786
I am trying to determine what testing I should ask for....what are reliable immune system tests? Should I do cd57 again, it was low last time.
I've seen a lot of ME patients mention elevated IL-8 results, but that's just a marker of inflammation which might have many causes. I wouldn't bother retesting CD57, or anything else unless there's a very good reason to expect levels to change. Nagalese is one that many people also have trouble with, and supposedly need to rectify to treat other issues.
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
roxie60, many people with Lyme are igenex negative. Their bodies are too weak to mount an immune response. Dr. Horowitz says that having a positive band of any of the following lyme specific bands: 23, 31, 34, 39, 83/93 shows you have been exposed to Lyme. Lyme is mainly clinical diagnosis anyways (based on symptoms). Good Luck with LLMD!
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
roxie60, many people with Lyme are igenex negative. Their bodies are too weak to mount an immune response. Dr. Horowitz says that having a positive band of any of the following lyme specific bands: 23, 31, 34, 39, 83/93 shows you have been exposed to Lyme. Lyme is mainly clinical diagnosis anyways (based on symptoms). Good Luck with LLMD!
Does dr horowitz consider IND also proof of ex posure?
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Im being treated for lyme and coinfections but im still not convinced since I had a few INDs and a couple '+' bands so knowing how dr horowitz or bruscano interpret igenex IND bands would go a long way in giving me peace of mind that doi g this treatment with so many abx is the right thing to do.