Good Blood Tests, Joint Inflammation Keeps Progressing

[Krys]

Hi,

I feel like a fraud posting here.
I have thought (everything matches) that I have RA or certainly rheumatoid something. I've been taking progressively bigger amount of anti-inflammatory, anti-viral, anti-bacterial, anti-microbial herbal capsules coupled with immune modulatory and immune strengthening herbs since late October (when there were only 2 joints in fingers involved). The inflammation in joints has been slightly progressing every single day and by the end of Jan. there were 34 joints affected. I have tried Chinese herbs and acupuncture, and when it did not work, I switched back to Tibetan medication for arthritis taken alongside my huge amount of herbal capsules. My search, since March, for AP doctor has not been successful yet.
A month ago I did blood tests and they are all good (just slightly raised monocytes: 14.6, slightly low RBC).  ESR, Antinuclear AB screen, CRP and rheumatoid factor are all within range.
I've been incorporating anti-inflammatory diet since March, and since last month I also make sure to avoid all allergens (corn, gluten, dyes, bananas, pineapple). And this thing is still progressing. It seems to be spreading even faster now.
What do I do? I totally believe that AP would help me. But how do I convince any doctor to prescribe it when the blood tests are so good? I don't want to wait until I'm immobilized. I really want to start AP now. Please help if you can. And thank you so much for this wonderful forum.
Radiant health to all, Krys.

[Maz]

Hi Krys and welcome! 🙂 Have you had a full rheumatic work-up done by a rheumatologist yet? So sorry to hear you're in so much pain.

First and foremost, please don't think you're a fraud….gosh, you sound like you're in quite a bit of pain and it's rough that you feel that way in addition to feeling so unwell. There are many kinds of seronegative arthritis and sometimes it's possible not to show any positive labs for a rheumatic disease right off the bat. These can show up later in the disease process. For example, it can be quite difficult for patients with psoriatic arthritis to actually get a diagnosis intially, because labs tend to be unremarkable. It took several years for my MIL to get a diagnosis of anklyosing spondylitis and psoriatic arthritis, because the rheumy failed to do HLA B27 genetic testing and her psoriasis rarely showed up at the same time as her arthritis that came and went for many years. It was only when she became nearly incapacitated with signs of joint destruction that she finally got dx'd. :doh: You've mentioned the possiblity of scleroderma in your sig line and this can also show up with no lab markers and little to go on in the way of inflammation markers.

This is just a suggestion from a fellow patient, but one thing that immediately came to mind with the odd lack of inflammation, in spite of your pain and the multi-systemic nature of the presentation of your symptoms (FM, SD and RA), is that you might want to get an IGeneX western blot run to check for Lyme disease (even if a prior standard Lyme test returned negative). Lyme and it's coinfections can present with either lots of inflam or none at all and quite a good number of Lyme patients get put into the mixed connective or undifferentiated connective tissue disease brackets.

There are actually one or two very good Lyme Literate MDs (LLMDs) who treat with antibiotics in IL, if you would like this info. Just let us know. Also, if you do decide to get IGeneX testing performed, we're happy to offer some guidance with how to go about that.

If not Lyme, then quite a few ILers travel out of state to Iowa to see Dr. S. who trained under Dr. Brown and is on the RBF's most experienced AP doc list. Would be happy to send you that info, too. In fact, Dr. S is very generous with his time and will take both patient and physician consults by email and phone.

Let us know what we can do to help, Krys, and hope it won't be long till you're on your road back. 🙂

Peace, Maz

 

[Krys]

Hi Maz, thank you so very much for your kind and thorough reply. I have not seen a rheumatologist yet.  I did the tests with 2 MDs hoping to convince them to do the protocol. No success. And I should have mentioned that I am not in much pain. I experienced quite severe all joint and even straight bones pain when I switched to Chinese medicine end of Feb. and was asked not to take any other herbal medication. Then it really hurt. Within less than 24 hours I started supplementing with “my” herbs. They do take care of the pain, too. They seem to slow the progression but they do not stop it.
The blood tests mentioned in the first posting are all I've done.  The only other testing I did was for allergies, and it turned out I am gluten hypersensitive, allergic to feathers, dust, molds.
I have a lot of brain fog so please forgive me if I sound like rambling. My line of thinking so far has been that as I don't have insurance, maybe all the blood tests that would help with diagnosis should be done with the doctor willing to do AP. But if the IGeneX testing can be done without seeing the doctor, I'll gladly do it.
Please, if you may, do send me the list of doctors in Illinois that do AP (LLMDs are fine) and I would love to get the contact info of Dr. S. in Ohio. There will be probably quite a waiting line, so while waiting, I'll be happy to work with an IL LLMD or AP rheumatologist if there is one.
It would be a bonus if any of them was knowledgeable about herbs. I think it is possible that my inflammation tests were within range because of the huge amount of herbs I've been taking. And I am afraid to stop taking them as even lowering the amount gets me immediately sick and the joints swell up and stiffen up much more.
Sorry for the rambling. I don't seem to be able to write a smooth and factual posting. I'll get there. Once I am on the protocol it will feel like safe sailing. Radiant:) health and joy:roll-laugh:, Krys

[judy cash]

Krys,

Don't feel bad about rambling, we have all been there done that, or maybe I should only speak for myself…LOL     I just wanted to say that I was sick for a couple years. All the doctors would say was that I was depressed. Then I started with SEVERE PAIN, I knew that I had to do something. I saw a rhemy., who said I'm  not sure what is wrong, I don't think its RA, but we will watch you close. Within six months of being told that I was diag. with RA. I was in shock and denial…… Then I learned about AP, I started it and have never looked back, nor have I regretted my decision. I wish you the best in  finding the answers.

Judy

[Krys]

Thank you, Judy.
My best to you and to all, Krys

[Maz]

[user=2297]Krys[/user] wrote:

My line of thinking so far has been that as I don't have insurance, maybe all the blood tests that would help with diagnosis should be done with the doctor willing to do AP. But if the IGeneX testing can be done without seeing the doctor, I'll gladly do it.

Please, if you may, do send me the list of doctors in Illinois that do AP (LLMDs are fine) and I would love to get the contact info of Dr. S. in Ohio. There will be probably quite a waiting line, so while waiting, I'll be happy to work with an IL LLMD or AP rheumatologist if there is one. It would be a bonus if any of them was knowledgeable about herbs.

 

Hi Krys,

I'll send you a PM (private message) with the physician contact info in a mo….just click top right of this page where it will say, “You have 1 new message.”

Hopefully one of the docs will be able to help you out. Unfortunately, the physician list is extensive for the US, so we're not familiar with the way each one will operate (purely allopathic, integrative, naturopathic, etc), so we recommend calling in advance to ensure a particular physician can supply the services required. Some folk will put together teams of docs, if they find they can't receive every service they would like under one Dr's roof…for instance, an ND may provide the herbs/supps needed and a different doc, the antibiotics. There are no hard and fast rules how to do this and it really depends upon your own needs and what your pocketbook can afford. Sometimes a doc will work with a naturopathic doc in their office, so the best of both worlds can be found. It's really just a question of calling around to ask and knowing what you want in advance.

If you do see one of the LLMDs, the LLMD would sign off on IGeneX Lyme testing for you. These tests do need a physician's signature and the basic western blot (IgM and IgG) costs around $200.

Hoping you find the best doc for you, Krys, and please let us know how you get on! 🙂

Peace, Maz

[Krys]

Hi Maz,

Thank you VERY much. You (and all this site) are such a treasure!
I will call around.
Thank you again for mentioning IGeneX Lyme test.
I was discouraged and you have empowered me to keep going. Thank you!!!

Wonderment of life filled with well-being, Krys

[Author]

Posts