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Hi all I just wanted to start another thread regarding my ongoing health problem. I would like guidance on a proper game plan or situation support.
From last post to this would make 5 shots of Humira (roughly 10 weeks). I do not see much change in symptoms except improvement in Eye Sight & Spine pain.
I still have stinging after urination, prostate pain and joint pain in elbow and the knee.
I have been to few Lyme doctors who pretty much have ruled out any active lyme disease as the cause. I was hoping at least they would say “hey bud you got lyme and here take some meds”, but nope far from that.
LLMD recommend that I follow up with my Rehumi regarding arthritis pain. One of the LLMD said I may have active AS disease which the path of treatment is Biologics.
So back to square one (ID) who doesn’t mind prescribing me Abx. So while I was on humira I continue to take Doxy (7 weeks). No change / improvement in symptoms.
I’m not hoping to have complete improvement from join pain but at least some improvement of prostatitis / stinging pain after urination.
As I had mention previously Flagyl at one point helped with arthritis pain & urethritis which no longer works.
So Here is were I’m at and I’m not sure how to proceed or what to do (no game plan).
1. I’m waiting for semen PCR results to be back from bedford research institute.
2. continue to work with ID with various Abx. PCR results will determine how to approach things.
3. STOP TAKING DOXY for 3 weeks and go see this new Urologist I found to help massage prostate and culture EPS.
My biggest question and concern is HOW DO I SPACE HUMIRA out?
This an immune suppression drug I prefer not be on for long time. However, few weeks after initial shot I can tell the drug wearing off and symptoms of blurry eye sight & spine pain creeping back. Take a shot and all goes away. I guess we can say its reducing inflammation.
Well if its reducing inflammation then what’s causing the inflammation in the first place?
I’ve had every single blood test ID, Rehumi & Urologist can think off. All standard routine Labcorp test have been negative.
How / What would you do if you were me at this point?
I think there is still time for the Humira to help. Perhaps you can add a DMARD. Leflunomide has shown efficacy with psoriatic arthritis and psoriatic arthritis is related to AS. Regardless, I think you need to be aggressive and fight this with everything possible. That is my opinion as you know.
It’s so hard to stay positive and keep the outlook strong.
LLMD did not do any testing after I recommended how this all started. Doc said I have been checked for everything that is possible via lab and of course there are “slow” growing bacteria infectious arthritis. They also said choice of abx would be doxy and flagyl which I have taken throughout the course and that i should continue to work with rehumi.
everyone seems to pass me back and forth. I feel my case is complex and would confuse great deal of there time.
I guess I learn one things is to never tell them you seen so many physicians and rehumi.
I’ve read most arthritis are usually cause by intracellular pathogen. How do you treat intracellular pathogen?
could that be why flagyl was helping me by stimulating the immune system?
Humira does the same thing Flagyl did – it instantly reduces inflammation in the eye & arthritis. Again with both drugs as the drug is out of the system you could feel the pain and inflammation slowly creeping back.
Since my son is in remission I have had a break from my neverending study (whew) but have been thinking of your situation and went back to review some of my research. I have 2 suggestions. There are 2 NSAIDS that are better for relief of axial disease symptoms: Indomethacin and Tolmetin. I think they are both on the Wal-Mart $4 prescription list and may help your back pain. My other suggestion is that you study the EULAR recommendations for psoriatic arthritis as AS is discussed in their threatment paradigms. The charts are not as daunting as they look at first. They are simple. You can also look at GRAPPA for reference, but I think EULAR is something to help you next time you see your doctor.
I also think you need to give your current treatment plan more time and may I ask what state you live in? I follow the work of a couple rheumatologists that are involved in axial disease and write scholarly research. Maybe you are near one.
But don’t you think treating the underlying cause, the bug in my prostate will solve all other issue?
Currently waiting on pending semen pcr testing resuls, should have them in next few weeks.
Do you know or has anyone taken flagyl and humira together?
I still don’t understand why Flagyl helped with arthritis symptoms while it’s not mention of this drug for treatment of arthritis.
Have you read anything about Flagyl?
I still don’t understand why Flagyl helped with arthritis symptoms while it’s not mention of this drug for treatment of arthritis.
Have you read anything about Flagyl?
Yes, Flagyl is used in numerous protocols for arthritis, including the ones at http://www.cpnhelp.org and http://www.arthritistrust.org, but also used for Lyme arthritis. This is why a LLMD was suggested as they don’t treat just Lyme, but many tickborne coinfections and latent reactivated infections. I’m surprised that the LLMD you saw wrote you off so quickly and did not do any further specialty lab testing, regardless of whether standard tests were positive or negative. See link to recent tv show where one of the world’s top LLMDs talks about this:
https://www.lymedisease.org/fox5nys-lyme-reason-special-report/
There is no reason why a person can’t choose to do both conventional rheumatic drugs and antibiotic therapy if that is the preference, though I don’t know of any experienced LLMDs who would write off a patient just because they were also doing conventional treatments, although the preference might be to not suppress the immune system, which can prolong or inhibit treatment. So not really understanding why the doc you saw turned you away?
Let’s hope your PCR testing helps provide you with some answers!
I’m surprised that the LLMD you saw wrote you off so quickly and did not do any further specialty lab testing, regardless of whether standard tests were positive or negative.
My suspicion is that the doctor in question is not a genuine LLMD, or not a very good one.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinThe thing is I don’t want to take humira but is the only thing that helps with spine pain. This drug is nasty makes me sick.
Maz – why do you keep revisiting the idea of lyme disease?
I don’t have lyme nor was I ever bit by tick.
Maz – why do you keep revisiting the idea of lyme disease?
I don’t have lyme nor was I ever bit by tick.
I don’t think you have Lyme disease, because I wouldn’t know if you did or didn’t. The reason for suggesting a LLMD (and Calida explained this really well in another discussion thread of yours) is because the experienced ones are great at looking for infectious causes and tend to be out of the box thinkers in this respect. Nowadays, many llmds aren’t even calling it Lyme, but MSIDs, an acronym for “mixed systemic infectious diseases syndrome” because they recognize that some infection has subverted immune function and has allowed other latent infections an opportunity to reactivate. E.g. Mycoplasma might take out immunity and a person who has a history of strep might find they are struggling again with high ASO titers. Ticks pass more infections than just Lyme, like mycoplasma fermentens or parasites (e.g microfilarial worms), for instance, or various viruses like Borbon or Powassan, so a person might not get passed Lyme, but may have been exposed to one of these other infections that can be equally devastating. Bartonella can be passed by ticks, but can be passed by cat feces, too. So this type of doc isn’t just looking at Lyme, in other words, but many infections that can make a person sick and treatments tend to be broad spectrum to hit a number of things. They also tend to be masters at preventing resistance issues by employing biofilm busters, cyst busters, and using combinstion abx therapies for this purpose.
Another reason for choosing an experienced LLMD is because they see cases of autoimmunity every day as a result of chronic infections and don’t need to be convinced of such. I think it’s kind of unfortunate that we still call these docs “LLMDs” because the trained/experienced ones are really MSIDs docs.
Thought you were aware of this, Workdofme, so my apologies if this wasn’t clear enough before as to why an LLMD might prove to be more effective at figuring out your complex picture. Does that clarify what I meant?
There are experienced ILADs-trained LLMDs and those that dabble at treating Lyme, as Phil pointed out. Sometimes there are clues that can be picked up that point to degree of experience, based on what we hear from patient feedback. However, it’s also true that one person’s doc frog is another’s doc prince, so when advocacy groups build their doc lists, this is also taken into account and why we always tell people to become fully informed about their disease and to research any doc in advance to ensure services required can be supplied. I’m not sure your LLMD is on the RBF list, but even if he/she is, degree of experience and approach to treatment will always be variable.
There is a doctor near where I live his name is ( Dr.B. , MD )? Do you know of his status, i.e.. if hes any good?
The last doc I went to try to sell me on supplement and majority of the reviews I’m reviewing about other doctors is that some LLMD are trying to sell you on some herbal pills and iv treatment.
I feel I know much about my condition and I just need a doc to look at the situation from different point a view and prescribe me abx.
Don’t get me wrong I can get the Abx I want but nothing is really working for my situation.
I don’t know if seen another rehumi or another LLMD (Dr. B) or another doctor is really a good choice. I’m kind a burn on money and I don’t have thousands of dollar to spend on trial and error.
i have a full desk with Abx. Doxy, Mino, Azithro, Tindamax, Flagyl, TMP, Humira etc…but none of them to seem to work and I’ve tried taking them for a while. Flagyl used to work
I’ve taken Doxy for 7 weeks and nothing, sure it helps with minor joint pain but nothing to go home about.
I just want to know HOW CAN I STOP the HIP & SPINE PAIN.
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