posted
I had lyme several years ago. I did go see an LLMD and after about a year, I was fine. I caught mine within 6 months of the bite. That has been about 4 years ago. Of course now I am 65 with family members that have suffered with arthritis so it is in my history. My first puzzling symptom of Lyme was the migrating joint pain. Horrible. Crazy! I googled and googled and finally went to see a Lyme doctor in Missouri...very well known and has a very good reputation. After a year of treatment, I seemed to be fine and have been fine since. Until the last couple of months. I am having a lot of pain in my hands and now it is going into my toes. It is not migratory pain. It stays pretty much in the same spots. I went to a local doctor and he took XRays. He said I might have a touch of arthritis but he would need to take a blood test to really get a good picture. I took a blood test and he called me into his office. He said he was 'shocked' to see how much rheumatoid arthritis I had that was found in the blood test. He said the Xrays did not show nearly as much as the blood test. He put me on Celebrix and is going to try to get me in to see a specialist. My question is this: Why was the Xray and the blood tests showing 2 different tales? Could this be the lyme coming back on me? I am really concerned and would like to know if anyone has had experienced such conflicting results between the Xrays and blood test with the end result of the tale being Lyme. I am showing swelling of the hand and finger joints. Not sure if that would be beneficial information. Thanks so much!!!
Posts: 213 | From Tennessee | Registered: Jan 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Carolann,
Welcome back. Sorry for why you are back, though.
First, Many here with neurotogical lyme can have trouble reading solid text without some breathing room for the eyes. In future posts, it's best to not have more than about 3-4 finished lines, like here.
Breaking up the post so that more can read:
carolann2013 posts:
I had lyme several years ago. I did go see an LLMD and after about a year, I was fine. I caught mine within 6 months of the bite. That has been about 4 years ago.
Of course now I am 65 with family members that have suffered with arthritis so it is in my history. My first puzzling symptom of Lyme was the migrating joint pain. Horrible. Crazy! I googled and googled and finally
went to see a Lyme doctor in Missouri...very well known and has a very good reputation. After a year of treatment, I seemed to be fine and have been fine since.
Until the last couple of months. I am having a lot of pain in my hands and now it is going into my toes. It is not migratory pain. It stays pretty much in the same spots. I went to a local doctor and he took XRays.
He said I might have a touch of arthritis but he would need to take a blood test to really get a good picture. I took a blood test and he called me into his office.
He said he was 'shocked' to see how much rheumatoid arthritis I had that was found in the blood test.
He said the Xrays did not show nearly as much as the blood test. He put me on Celebrix and is going to try to get me in to see a specialist.
My question is this: Why was the Xray and the blood tests showing 2 different tales?
Could this be the lyme coming back on me? I am really concerned and would like to know if anyone has had experienced such conflicting results between the Xrays and blood test with the end result of the tale being Lyme.
I am showing swelling of the hand and finger joints. Not sure if that would be beneficial information. Thanks so much!!!
Can you contact your previous LLMD right away? If not, another LLMD ?
Yes, this could be lyme not so much "coming back" but flaring. It can hide / stay in the body although, often when symptoms either pop up new or old symptoms pop up, a talk with one's LLMD can set that back on the right track.
Celebrex can also have some very serious side-effects that a LLMD needs to go over with you.
Be very careful with your stomach. NSAIDS like Celebrex can cause "leaky gut" and really tear up the lining of the stomach.
Magnesium was so much better for me but it took me a lot of stomach damage before I even knew about the pain relief that magnesium can help with.
When the stomach lining is damaged, so much more full blow body damage can take hold. But don't think that Rx to soothe the stomach are safe, either. They also have their risks.
I'm sorry you are dealing with all this. I so hope you can talk soon with a good ILADS-educated / aware LLMD.
Good luck figure out what all is going on, why and what is SAFE that can help you. rheumatoid arthritis is often caused by lyme for various reasons.
There are much safer ways to address the pain & inflammation than NSAIDS. They created an ulcer in my stomach, which caused me years of suffering. But not just that, the "leaky gut" that developed caused so much other trouble. -
[ 10-31-2019, 02:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure to avoid all steroids and also other kinds of immune suppressants or "biologics"
Before seeing any specialist your GP suggests, it's really important to see a good LLMD if you can't get to your previous one.
Be aware that the immune or antibody markers your doctor "saw" can happen from lyme . . . and assessing / addressing lyme, itself, can help bring those back in line, hopefully.
A LLMD will also be able to assess whether you need to see a new specialist for the RA -- and, if so - exactly whom to see.
I think it can be a dire mistake to see a specialist / usually a rheumatologist who is not also lyme literate, with experience in lyme, too.
They are very rare, though, so, what makes most sense right now, is a good LLMD who should be able to help you get what you need now and consider a path forward. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
And why BIOLOGICS that also dampen immune function can also be just as damaging if infections are not being properly identified & thorough addressed. - -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Advocating Antibiotic Therapy as an Effective Treatment Choice for Rheumatic Diseases
-------------------
Also read all you can by very "lyme literate" master herbalist
Stephen H. Buhner
his website, discussion boards, Q &A blogs, his books on lyme and other tick borne infections, etc.
His work is so valuable not just in see the wide array of herbal possibilities but also in his excellent understand and descriptions of how these infections act, their very makeup and what we can do about that.
--------------- BLOOD GLUCOSE / INSULIN ?
One other key to help reduce inflammation:
If you not yet have a home glucose meter, I strongly suggest getting one so that you can see where you daily blood glucose is but, more important, at 30, 60 and 120 minutes after a meal to see how certain foods work or - don't - for your body.
If you might have insulin resistance, pre-diabetes or Type 2 Diabetes, it's key to be able to reverse course.
If, by chance you might have Type 1 Diabetes, what I suggest has also been employed to help some with T1DM.
Sugar in our diets can cause lots of inflammation. And all starch is sugar, really.
A low carbohydrate or a lower carb "ketogenic" diet has been helpful for many with swelling for various reasons.
For starters, in what kind of veggies do not trigger glucose spikes (and thereby also raise insulin which is very damaging in excess, too) . . . see the websites and also the YouTube videos for
"Virta Health"
"Low Carb Down Under"
"LowCarbUSA"
:"DietDoctor Podcast"
"Dr,. Eric Westman"
"Dr. Sten Ekberg"
"Dr. Ken Berry" --
[ 10-31-2019, 02:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I forgot about typing with the spaces between each sentence. I knew that!!! I just forgot. So sorry!
You gave me a lot of information. It has been a couple of years since I have been on here.
I had to brush up on everything.
I am taking your advice. I am going to start reading.
At this moment I am not able to go see a Lyme doctor. My money is a bit depleted at the moment.
I do work and at work I have an additional policy....the one with the duck......and believe it or not, I have taken out the cancer insurance under that plan.
The insurance policy also has a Lyme policy. But you do have to be diagnosed with Lyme before it pays.
The pay is a lump sum in addition to other small payments along the way. I was clearly surprised by it covering.
However, most of the doctors are a fair distance away from me and it will be a major trip for me.
In the meantime, you have given me lots of reading references.
Thank You so much!
Posts: 213 | From Tennessee | Registered: Jan 2013
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posted
It can take much longer for the damage of "RA" to show up on X-ray. I would definitely contact your previous LLMD and get him on board immediately.
Make an appointment, even if it takes 6 months or more to get in to see him. You can always cancel it if you can't round up the money in that amount of time.
I pray you will be able to get a handle on this, because the pain can be really bad, from what I know of RA. Be sure to go to the Roadback site to see how they treat RA.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
CarolAnn2013, RA is usually caused by a mycoplasma, which requires a different antibiotic protocol from Lyme disease. RA usually affects the smaller joints, such as the knuckles in the fingers and toes, which you have described.
Also, it is generally accepted that there is a genetic component for RA.
There are two closely related websites with similar information about the antibiotic protocols for RA. You can probably obtain a list of doctors from each of these two groups.
Personally, I would avoid Celebrix in favor of the special antibiotic protocol for RA -- which is very different from the various antibiotic protocols for Lyme disease -- different organisms: mycoplasmas vs. spirochetes.
Yes, ticks can carry mycoplasmas, too, so perhaps your tick bite did set you up for RA, but most LLMDs consider mycoplasmas to be secondary, opportunistic co-contaminants. Some mycoplasmas are transmitted by aerosol, some by intimate contact, and ticks can transmit mycoplasmas too.
That's why you would do better to find a doctor who specializes in antibiotic treatments for RA by asking for a doctor referral list from the two RA groups listed above.
I don't know if Celebrex interferes with the antibiotic protocol or not. Perhaps an ordinary NSAID,such as Aleve or Motrin, would offer temporary pain relief. Pain will increase quite a bit during the early weeks/months of the RA antibiotic therapy protocol, due to Herxing.
I used to be a good friend of the volunteer leaders of the two RA groups above, but that has been ~ 25 years ago, and I don't know if they are both still involved or not, due to age.
I'm not an RA patient myself, so I haven't kept up with recent developments in either of these two RA groups. I met both RA volunteer leaders at a couple of medical conferences many years ago.
I do know that the doctor in MO used to treat RA, in addition to treating Lyme, so if you ask him about these two different protocols, he might be a good resource for you.
Nevertheless, it will be up to you to learn the difference between these two treatment protocols yourself because I don't know how his practice has evolved over the years. If you are well informed, then you'll be able to discuss these treatment differences with him so that he doesn't overlook anything of importance for your individual case.
Posts: 4563 | From TX | Registered: Sep 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One of the best anti-inflammatory helpers.
Topic: MAGNESIUM - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TxLymeMom,
Great detail about mycoplasma and RA - and glad you posted THE ROAD BACK, too, as it's such an important site. I really appreciate your post - and leaving it after even some thought of editing -- I know how that goes
CarolAnn, Good luck. It's a lot to sort out but it can become clearer in time - and with the right sources of information / doctors (I hope you find a good doctor to guide you at this point in time). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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