posted
my ers sed rate came back high and my rheumatoid factor came back high. Neurologist sending me to a specialist. Is this all part of lyme or babs. My fingers are swollen and killing me for past year. Thought I was just getting old. sorry I meant to type ESR sed rate
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "sed rate came back high and my rheumatoid factor came back high" (end quote)
-- this is very typical of lyme / TBD. Usually when the lyme / TBD or other chronic stealth infection such a possible mycoplasma / Cpn is properly addressed, these tests often revert to normal.
Be sure to call their office and have the staff person who deals with paperwork send you paper copies of all the tests done.
" Neurologist sending me to a specialist" (end quote)
First, what kind of specialist? Exactly.
Actually, no one is sending you to anyone. A specialist has been recommended to you and an appointment will be available. You can go if you wish. You are under your own power here, though. You have a choice.
However, first, you need to research this specialist. You need to talk with your LLMD about this, too.
It's important to understand these test results in light of lyme / TBD. So talking with your LLMD first really matters.
Get the hard copy of those tests results and, with your LLMD, determine what they mean. Is there a genetic component to the test - or a result of lyme / TBD / other.
Are you gluten free? This might be connected, in part, too.
If, after doing some research on this specialist, and after talking with your LLMD about what those tests mean and if this specialist has the skill, training, knowledge and mindset to help you . . . then you can decide if this is a move that makes sense. Or, if not, what else might make better sense.
Survey all the lyme support groups within as large a radius as practical and ask them about his specialist. This is just a start to how to research whether a specialist might be good enough for someone with lyme / TBD.
Ask your LLMD for other suggestions on how to properly determine beforehand if this appointment has a chance of being helpful. You can't find out everything, of course, but I'd had to see you run up against the same problems as this past appointment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- SED Rate
Basically, it measures inflammation.
It's usually high for anyone with lyme / TBD / stealth infection. And is usually returns to normal with proper treatment & proper liver & kidney support -- and a clean diet of real foods, non-processed.
A gluten free, possibly a dairy-free and corn free diet are important, too, as those foods can trigger inflammation.
Certainly, avoid any food that is GMO (genetically modified), especially GMO soy or corn in anything - and it's everywhere.
Organic foods, certified organic will not be GMO. For meats & eggs, be sure to get certified organic eggs / free range - chicken, free range / grass fed cattle or lamb, etc.
Fish: only wild caught. Never farmed. Find a website that highlights eco-friendly and safe fish types.
Avoid those with mercury, obviously and limit even the good other ones as there is so much plastic in fish now I'm not quite sure how to advise anymore. Still maybe once a week, wild salmon or sardines (Wild Planet is a good brand) can be good for the brain.
Oils & Fats - only the freshest, organic. Butter is best. Avoid margarine or any "vegetable" or cooking oils. Avoid all trans fats.
TURMERIC is the number one culinary root spice / herb to use as well as in supplement. Most liver supports are also helpful to manage inflammation.
Ultimately, assertively targeting infection (which ever method chosen) is vital along with support. Support can help along the way but it's never enough if the method of addressing infections is not assertive / direct enough or on a plan that will be.
. . . Q: Can rheumatoid factor be present in a patient without rheumatoid arthritis?
Yes.
Rheumatoid factor is also present in patients with other conditions, including other connective tissue diseases (such as systemic lupus erythematosus and Sjögren's syndrome),
[poster's voice: often certain "connective tissue" diseases can be misdiagnosed when lyme / TBD / stealth infection is really what's going on]
some infectious diseases (such as infectious hepatitis, syphilis, infectious mononucleosis, parasites, and tuberculosis), liver disease, and sarcoidosis.
[poster's voice: and that would include lyme / babesia / other tick-borne infections and other chronic stealth infections, too]
Rheumatoid factor can also sometimes be present in normal individuals without diseases. This occurs more frequently in people with family members who have rheumatoid arthritis.
So precise interpretation of rheumatoid factors requires a complete knowledge of the patient's history and medical status. . . .
[poster's voice: and that means that only a doctor who is ILADS educated in all the various tick borne and other chronic stealth infections is capable of interterpreting these results for someone who deals with lyme / TBD / chronic stealth infection.
This can be more than infection, sometimes, but you have to start with someone who understands the science of these infections to begin with. Support methods as in post above also key to manage.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler, he wanted me to go see a rheumatoid specialist and he is setting up the appointment. I will let my lyme doctor know first. he did a lot of other testing that all came out fine. I am assuming its part of the lyme issue.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
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posted
- Do you know what rheumatologists do?
If the neurologist forcefully opposed even the idea of lyme and shamed you for saying you deal with it . . . you can be sure this rheumatologist is not going to know about lyme, either.
If further testing is done that might be worth going but most likely you will be prescribed either steroids or biologics to suppress your immune system. These can be very damaging for anyone with lyme / TBD. You need to study up on all this.
"Autoimmune" diseases are very often "favored" as a diagnosis where for those with lyme / TBD, it's the infections that are the real cause. Immune SUPPORT while addressing infections is key.
This is what a good ILADS-minded LLMD will do. For those who have lyme / TBD that has evolved into a true autoimmune condition or who might have a genetic autoimmune piece of the puzzle, a good LLMD should also know what to do - or which other specialists with whom to confer.
But this is not at all what rheumatologist do - they do not treat lyme / TBD. Most ignore it.
This I guarantee, absolutely, positively guarantee: lyme, babesia, other TBD cannot be ignored. Immune suppression, alone, will cause much trouble.
There may be one in million rheumatologists who would be lyme "literate" but you are not going to just play bingo or the lottery here, I hope. You must know before even scheduling the appointment.
If it has been scheduled for you, unless you can do your homework before that set date, cancel. Do your homework and then decide.
Please do proper homework on the scope of the doctor to get an idea into how he practices. Find anything he's written, what professional / medical affiliations he has, etc.
By reading what he's written you can find out a lot about his mindset and his expertise. Call his office and ask the office staff if he normally suggests any particular book for patients. This can tell you a lot, too.
You have the choice of going to this appointment or not. Your LLMD can help you decide but you also have to do your own homework, too.
You might start by asking around at all the lyme support groups in your area. Then ask as the support groups for chronic fatigue syndrome. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Topic: what do STEROIDS (such as prednisone, etc.) actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Certain vaccines might also be recommended by a rheumatologist. Be aware of how this might affect your health, too.
VACCINE LINKS set - Ingredients in Vaccines -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Have you seen the documentary:
UNDER OUR SKIN
& the sequel: EMERGENCE
? ? ? ? ? ? ? This is likely the most important question of your day.
If you have not, this could be the most important action of your life to watch both. The most important part of your homework right now is understanding the scope of what's going on with your body and who can help.
You might the films through some streaming services such as Hulu . . . or here:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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