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Another one –
http://lymemd.blogspot.com/2010/01/lyme-2010-brief-update.html
“Diagnosis remains clinical. Laboratory data should not be over-emphasized. Lyme Western Blots from Igenex, MDL and Clongen are helpful. I prefer Clongen. They provide quality pictures of blot strips which quantitatively compare patient reactivity to controls.”
Clongen – I have not heard of that lab before.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
That is frustrating.
Just a bit of background here. My husband has been seeing Dr. F for more than 2 years. He was diagnosed with Palindromic Rheumatoid Arthritis (basically it's rare and is like RA only it “migrates” around your joints and is often a precursor of full blown RA). He has been on abx for all this time and has not had anymore palindromic flares in that time.
Unfortunately, he has an insanely stubborn wrist inflammation that has not responded at all to anything. It's only gotten worse and is now deformed and he has only about 15% movement of it. He's on constant pain meds. 🙁
Dr. F has not been one to check in on his patients or change up something that isn't working unless prompted or asked. We feel we're at a dead end at this point because he needs to find what is causing this wrist problem – Dr. F does not believe it's RA. If it were mycoplasma, it would have been better by now. It's worse.
Enter the Lyme thing. We're wondering if that could be it. Dr. F is not big on the Igenex lab, and Jeff has already tested neg for it a few years back when Dr. F did the bloodwork for it then. We either accept that it's not Lyme and continue with no answers or we go down that road.
You have to be your own advocate and it truly is crappy. We have no idea what to do at this stage. Do we spend a few hundred getting the Igenex test done or do we start pursuing things like accupuncture and food restrictions etc?
So hard not knowing…empathizing with you…
a newday – It sounds as if any mycoplama-related infection may have been taken care of by the mino but that there is something else going on that it is not addressing. It may well be Lyme and possibly co-infections and/or CPn (Chlamydia Pneumoniae). You can take a look at http://www.cpnhelp.org for the latter. In both cases, a combined abx protocol is required. Whether it is either or even both of these, an LLMD would be able to help. One of the US Volunteers would be happy to send you a list.
You can use the search button above for Lyme testing discussions, of which there have been many. But I believe you can start with the basic Western Blot test from Igenex – which is #188 and #189 at a cost of $200. You can order this kit yourself from them, just need a doc (any doc) to sign off on it.
Many of us did well for a good while on a tetracycline drug such as mino or doxy and then plateaued or had certain things not responding, after which it became necessary to start searching for more answers. I dont think you are back to square one – just at a fork in the road. You probably need a little time to re-group now and look at some options, then start on the next phase of your husband's road to wellness. Take care, Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Dawn,
So sorry you've hit another wall. :doh: My Lyme/SD started with severe carpal tunnel pain in both wrists and totally cleared up with Lyme treatment. Hard to know how much damage has occurred to your husband's wrists, but I would still look for the source and insist on a Lyme test from Igenex. Remember, the results could say “CDC negative” and still be a very positive test if he hits on certain Lyme-specific bands. We can help you interpret the results.
Take care…..kim
Suzanne – I read this report and he says in it that “Zithromax orally is a poor Lyme drug”, but that is what a lot of people on this forum seem to be on for Lyme disease and that is what I will be starting, too.
Just wondering about that….
ReesaK
I'm not going to get into a big discussion about whether AI diseases and Lyme co-exist, if one triggers the other, or what comes first, the cart or the horse. After years of trying to pinpoint what got me sick in the first place, I've come to the conclusion that it was a multitude of things. The best way I can think of all of it is this–I have a variety of infections that, for some reason or another, have compromised my immune system. Treating each of these infections is the only way I see me getting better. Have I been diagnosed with SD? Yes. (clinically) Have I been diagnosed with Lyme? Yes. (clinically) Could it be something else? Yes. All I really care about is addressing the underlying infections currently wreaking havoc on my immune system, and irradicating them to the point where my own immune system can take over like it used to. Diet and exercise has been a crucial part of me getting well, and I believe eliminating triggers (food allergies, stress), and not getting caught up in the why's and labels of what's going on has served me well. I know how frustrating this all is because I've lived it. Surround yourself with as much information as you can, and make the best decision about what YOU think is right for you. ALL of us are different, and have different variations of illness, thus will respond differently to treatment.
You can go to 10 doctors, and will get 10 different explanations as to why you're sick. Just know that you can take bits and pieces of what makes sense to YOU from various doctors, and decide what the best path is. I know this doesn't give you any definitive answers but, NOTHING is going to give you the “Aha! 100%” answer you're looking for.
A final thought and I'll get off my soapbox…STRESS will do so much damage to your immune system so, whatever you can do to decrease your stress load, I'd do.
Maria:)
[user=977]mschmidt[/user] wrote:
….
A final thought and I'll get off my soapbox…STRESS will do so much damage to your immune system so, whatever you can do to decrease your stress load, I'd do.
Maria:)
All very good points from my limited experience with this, and this last part I appreciate especially. Do you have more specific thoghts about this? Like removing stressors vs enhancing the ability to handle it without being stressed vs enhancing the ability to stay away from them (or even just don't consider letting them get close, so to say).
[user=2332]reesak[/user] wrote:
Suzanne – I read this report and he says in it that “Zithromax orally is a poor Lyme drug”, but that is what a lot of people on this forum seem to be on for Lyme disease and that is what I will be starting, too.
Just wondering about that….
ReesaK
Yes, I wonder about it, too. I guess it is all trial and error for Lyme like it is for RA?
Personal experience – Zith is the best we have found for my daughter, whether it is JRA or Lyme she has.
Also on that blog somewhere it says Plaquenil isn't good, either, and I know a lot of Lymies do well on Plaq. Plaq hasn't helped my daughter's arthritis, but it really helps keep her lowgrade temps at bay.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Thanks, Suzanne – that really make sense. I will check out the rest of the blog. I haven't been on the board much this week – I guess trying to get back to living some semblance of a normal life, trying not to worry as much. I did see my naturopath and he has got me taking a number of supplements which seem to be helping quite a lot with my energy level and brain fog. I'm set to start doing some homeopathic remedies too but apparently it is possible to have a Herxheimer type reaction from them in the beginning as well so I am waiting to begin until after the birthday party we are throwing for our children in a week.
In the past week I have been blessed to recommend this board and Dr. F to two different lovely ladies in need of help – one with CFS and one with lupus. Both have been formally diagnosed. I guess I should have waited to get a “real” diagnosis before coming on the boards with my issues and worries… but I feel so grateful to participate here and to learn so much from the other members. I am also grateful to be able to help point people I meet in the right direction… away from prednisone and immunosuppressants and toward RBF and Dr. Brown's work.
A, I am not sure about the answer to whether one should take Moducare with abx. I am going to send you a PM with the contact information for my naturopath, who could certainly answer your query via email. I think the Moducare has been extremely helpful in my personal case – especially with my Hashimoto's. When I was first diagnosed with Hashimoto's my TPO antibodies were 880 and after 6 months on Moducare, D3, Folate and Magnesium (plus I was eating gluten free) they dropped back into the normal range (0-34). Before my third child was born they had come all the way back to 15! I felt and looked so healthy. Of course, after all the stress of her premature birth, my 2 week hospital stay, her NICU adventures and my father's death… the antibodies went sky high and are still there. But I believe going back on the Moducare will really help again.
Thanks everyone for your kindness and help.
P.S.
Oh wow, now I re-read and see that a lot of people have posted since I last checked. Thank you all so much! I will take your advice to heart and I do agree that we must all find our own way, and that I have to learn to trust what makes sense to me and what feels right for my own body. I agree with Maria that I have got a lot of different imbalances going on in my body and at some point it does not matter what was the original trigger. What matters is how to get back into balance. I am actively working on this now, even without abx. Even though I am open to the abx if prescribed in the future!
Take care and have a wonderful weekend!
Nord,
Oh, to be able to master that would be great!:) All I can say is that getting the negativity out of your life is a good start. I used to welcome confrontation but, now I run in the other direction. I try to avoid being around people who stress me out, as well as situations that stress me out. Yes, finding better ways to manage stress are certainly helpful. I meditate and run/exercise, to get my mind clear. Spending time with my friends, and as many nieces and nephews that I can seems to do the trick, too.:D
Maria
anewday,
Is it your husband's wrist joint that is deformed or is it the hand? The reason I ask is my husband had extreme swelling around his wrist that lasted about 9 months. None of the doctors (LLMD, rheumie, primary) had any real suggestions for it. My husband was on Lyme antibiotics but it wasn't until he tried bicillin that the swelling finally resolved. He was left with a hand and fingers that couldn't lift. Therapy didn't make a difference. Finally, he saw a hand surgeon and in April during a long surgery we found out that the inflammation had made all of the tendons rupture.
Dr. F has no answers for you so maybe you need to get another opinion from someone else.
[user=13]Parisa[/user] wrote:
anewday,
Is it your husband's wrist joint that is deformed or is it the hand? The reason I ask is my husband had extreme swelling around his wrist that lasted about 9 months. None of the doctors (LLMD, rheumie, primary) had any real suggestions for it. My husband was on Lyme antibiotics but it wasn't until he tried bicillin that the swelling finally resolved. He was left with a hand and fingers that couldn't lift. Therapy didn't make a difference. Finally, he saw a hand surgeon and in April during a long surgery we found out that the inflammation had made all of the tendons rupture.
Parisa,
I take it your husband had good results with the complicated hand surgery? Sure hope so. That had to be yet one more very painful episode in his life. :crying:
Take care…..kim
Hi Kim,
My husband has recovered from the surgery and is still doing PT. At this point, he hasn't recovered all of the function that he would like and there is question as to whether the graft has ruptured or if there is still some nerve damage. The hand is better than it was before the surgery though so we don't regret it.
[user=2523]hopefulmama[/user] wrote:
If there is some kind of spiritual component to my healing process, the lesson must be about having to learn to trust my own intuition or follow my own gut.
So far, none of the answers that I have gotten from any doctor add up, support each other, or give me a clear path to travel forward.
- He believes flu shot is a main culprit in my illness, insisted I never have another flu shot in my life
I just went to my regular medical Dr yesterday and he asked me if I wanted to be put on the list for a flu shot. I said “NO” but then he explained the importance of the shot especially with my conditions and then I told him to put me on the list. My wife and I both never received a flu shot and have not been infected by the flu. We always said laughing why jinx our self and get a shot then we will get the flu. You said that the flu shot was the reason behind a lot of your problems. Can you explain this more. I am wondering if I should take myself off the list.
Yes, I know how you feel when all the answers you have gotten from Dr's don't add up. I guess you understand that I been going through the same things. I was tested for Lyme with negative results and I know I have Lyme.
Trusting out instincts is the best thing. We know our bodies better than anyone and our instincts are there for a reason. Instincts and gaining knowledge of my own condition is what lead me to AP treatment. My instincts tell that in time AP will make me better. My instincts tell me that I also need treated for Lyme. My AP Dr plans to test me herself and send the results to a lab she trusts in CA. Is that the Igenex lab?
Jim
[user=13]Parisa[/user] wrote:
Hi Kim,
My husband has recovered from the surgery and is still doing PT. At this point, he hasn't recovered all of the function that he would like and there is question as to whether the graft has ruptured or if there is still some nerve damage. The hand is better than it was before the surgery though so we don't regret it.
Ouch, poor guy, that sounds like he's not out-of-the-woods pain-wise. :crying: Sorry. It was his turn for a break!
I always wonder in these situations how much consideration can be given to trying to construct tissue that is damaged in the first place, and then on people that are not going to heal normally. Sending positive vibes your way that he's just taking a little longer to heal and will wind up with full function.
Take care….kim
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