I was recently diagnosed with both Ankylosing Spondylitis and Lyme Disease in early January of this year. I've been experiencing symptoms for about a year now which include; chronic SI joint and shoulder inflammation and pain, muscle stiffness, cognitive problems with short term memory and ability to focus, extreme fatigue and loss of stamina, and tinitus in both ears.
Has anyone heard or know of research suggesting a link between the two diseases? Both my general MD practitioner and Rhumatologist claim there is not. I find this hard to believe however, as symptoms of both came on around the same time a year ago and have progressively have gotten worse. Currently I am on antibiotics and am trying to find a lyme literate doctor in the SF Bay area.
I also read research stating that immune suppressing drugs should not be given to people with Lyme, as this is typically the kind of drug given to people with AS. Needless to say, this worries me.
Any suggestions or links would be greatly appreciated. Thanks so much.
-Chris
Posts: 6 | From Berkeley, CA | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, indeed, there is a connection. Who is treating the lyme? Sounds like no one ! But I see you are looking for a LLMD.
There is one very near you. I only have the name, not the phone number but will PM that to you. Anyone else?
Stay off of the steroids.
Fire the Rhumatologist and find a MD GP who is LL to back up treatment with an expert LLMD who can help you with the big picture - or the LLMD can refer you to a different LL specialist if your case is beyond his scope.
You've clearly been dx with lyme but a LLMD should also check for other tick-borne infections as well as Klebsiella pneumoniae, as there is some research connecting that to AS.
Often, lyme patients have one or more infections and a good LLMD will know how to design treatment to cover all the bases so that the timing and the support measures are all well planned.
Rhumatologists don't really believe in lyme or understand its potential to destroy and the very complex treatment required. I hope you find the best care possible.
This can get better. Really. There is a (now retired ) LLMD who was dx with ALS and told his life was pretty much over. He later found out it was lyme and babesia (another tick infection). He got WAY better.
So, Take care, now. This can get better for you, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Have to agree with everything that Lymetoo and Keebler said above.
Everyone of those symptoms can be caused by lyme disease, and they are fairly common ones for lyme.
The loss of fatigue, cognitive problems, muscle stiffness, shoulder inflammation and joint pain -- most lymies have them.
THere is a very good llmd near you, hope you can get an appointment soon. Steriods are known to make lyme symptoms much worse, and their use should be avoided at all costs.
Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BTW, I've been looking at some medical abstracts and some doctors, all around the world, have wondered about a connection between lyme and AS but the tests said "nope" - but - they did the wrong tests !
So, if your rhumatologists read that stuff, he would not have known that they did the wrong tests. And that is why you need your doctors - all your doctors - to be lyme literate.
Did your rhumatologist test you for Klebsiella pneumoniae (I'll bet he did not) ? That has been connected with AS. When you find a good LLMD, you will probably be assessed for that, too.
You know you have lyme, though. That needs to take front seat.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You ARE NOT consuming even a trace of aspartame/Nutrasweet/Equal or asparatame by any other name, right?
If so, stop. check even mints and toothpaste.
Also avoid MSG. Google for all the names that hides under.
----- For TINNITUS:
When you make the appointment with the LLMD near you, ask what he would suggest for tinnitus until you can get in to see him.
You say that you are currently on antibiotics. By chance would that be Azitrhomycin (Zithromax)? Zith can be very hard on the ears. There are many other options.
Magnesium and FIsh oil are usually the top two recommendations to help lessen tinnitus. Then Turmeric.
Pine Mountain Dan Shen (Salvia m) is especially good to help settle tinnitus, too and it's good basic liver support. I think you should be fine with that (but I'm not a doctor, just speaking from what worked best for my ears). It may be relaxing but does not "wire" nor really sedate.
With antibiotics (abx) you need a good Probiotic to help prevent system yeast infection from abx. Also - you need a good liver support supplement. Milk thistle is best.
posted
thanks for all your replies, I appreciate it.
Currently I am on doxycycline, 200 mg / day for 60 days, probably have about 10 days left. I also have been taking over the counter and perscription NSAIDs to help with pain and inflammation.
MRI's showed sacroiliac damage but no fusion as of yet, which is common among AS patients. I also tested positive for the HLA-B27 marker which is strongly linked with AS for people of my demographic (white male's in the their 20's-30's).
Though I don't remember receiving a tick bite recently, I did grow up on the east coast and spend a lot of time outdoors as a child and throughout adulthood. I spent 4 months outside on a biking and camping trip, being outdoors just prior to the onset of my symptoms.
How does one determine if lyme is still present after antibiotic treatment? What else would a LLMD do for me?
again, I thank you all for all your thoughts and replies.
-chris
Posts: 6 | From Berkeley, CA | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: How does one determine if lyme is still present after antibiotic treatment? ---------------------
You will have had sixty days at a very low dose of a single medicine that treats only one stage of lyme. There are other Rx used, in combination and rotation that also address the cyst form, etc. That is why you need an LLMD. This is very complex.
Longer treatment, combination and rotation will be needed to effectively treat the lyme. As yet, there is no cure but many, MANY have gone on to have lyme be a faint memory. It will take a while, though.
You should also be tested for other tick-borne infections as they often travel together and the success of lyme treatment relies heavily on other TBD (tick-borne disease) being addressed, if present.
. . . Primary oral therapy with Doxycycline and Tindamax is excellent. . . .
. . . Patient should be treated with IV antibiotics for at least 12 weeks, longer if possible. . . .
. . . The body cannot be sterilized of Lyme bacteria. Intracellular bacteria will always persist. Unfortunately, many patients require maintenance therapy. . . .
. . . There is no one right way to treat Lyme disease. At times you have to be creative--and, never give up. Individual responses to therapy are impossible to predict. . . .
. . . Politics: no change except Connecticut. Patients must understand that doctors who treat Lyme disease face ridicule from their colleagues and possible censure from medical boards. . . .
. . . . Be sure to read the original work in detail, link above.
And, now, I can only imagine that this is overwhelming and shocking in many ways. I so wanted to be a comedienne and this is a polar opposite. But, since lyme has destroyed my life, I fight like hell to keep that from happening to others.
Please read through all the links you've been given. I hope you've been saving them to a file on your computer.
With proper attention, this can get better. And, while the advice and counsel of a good LLMD is so important - for many - that is not an option. We do the best we can with what we have. If you need other ideas, people on this forum will share alternatives- but you would do best to see a good LLMD for their advice on how to proceed. From there, you will have some leeway.
As the doxy is about to run out and no LLMD on the scene yet, you might consider garlic capsules (allicin) or Olive Leaf Extract as an interim measures. Olive Leaf Extract would be easier to tolerate with less smell but Allicin can really pack a punch and be a good member of your team.
Did your prescribing doctor tell you to take lots of Probiotics during abx (antibiotic) treatment? My guess is they did not. But, whether they did or not, it's often forgotten. You need LOTS of good probiotics (take away from doxy and also away from the strong herbal supplements).
If you have not yet gotten Milk Thistle, I hope you can. It is very important so that your liver can be on your side. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Assuming you have lyme disease, AVOID steroids. Trust me, I lived through six months of pure hell after taking three steroid injections. I'm fortunate to have lived through it, seriously. Avoid steroids at all costs!
Though I don't remember receiving a tick bite recently, I did grow up on the east coast and spend a lot of time outdoors as a child and throughout adulthood. I spent 4 months outside on a biking and camping trip, being outdoors just prior to the onset of my symptoms.
that's pretty telling
What else would a LLMD do for me?
for one thing, he/she would give you the optimum dosage of 400mg per day so you could actually get over the Lyme
Do your homework here!!! (from the teacher!)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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yes this is very overwhelming, and I think I will try to see a LLMD asap, it's just hard to digest this all and take fast action with such low energy and difficulty with concentration at the moment. Not to mention I get re-occurring sinus / head colds this time of year with the cold rainy weather, more so now that my immune system is being compromised (currently suffering through one which adds to things).
that's interesting about the garlic and olive leaf extract, would you say that they are more potent than oil of oregano and gse? I have a friend who rid herself of an abx resistant staff infection with the combination of the later two...
I'm currently taking a probiotic, but read in the lit that it's good to take several varieties, especially with the liquid acidilphilous. Is it safe to start taking the other supplements mentioned in the burr guide prior to seeing an NNMD? I'm just feeling cautious about starting a strict supplement regime w/o the supervision of an NNMD...
thanks again all, it means a lot to me.
-c
Posts: 6 | From Berkeley, CA | Registered: Feb 2010
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