Update and prednisone question

[laurawm]

Hi Everyone,

I saw my integrative doc this week and of course he did not like the idea of mtx, especially since it would cut off my ability to try a new peptide. He did a good deal of testing using the electric energy in my body to test for strength/weakness when presented with different substances, medications, and therapies. Is anyone familiar with this? He puts a good amount of trust in the results. He had a nurse come in and hold one hand on my back while pinching together two fingers on her other hand. In my hand he would put different vials and then test the nurses fingers for strength holding together. Invariably substances such as artificial sweeteners and the like make everyone weak, and beneficial substances for that particular individual pass strong strength energy through the body to the tester. This doc says the peptide will work if we get the right formula and was visibly frustrated when I told him that the rheumatologist had given me an explanation about adrenals as to why they would not work for me. As it turns out, the peptide I test the strongest for is the one that treats lupus (maybe he did not test this one initially or just decided to try the broad spectrum one first while waiting on the feedback from the sample sent overseas for a custom formula, which has still not come back and may not be back for another three months) and he would like for me to try this. I cannot switch to a new peptide without a six week wash out, which leaves a month now if I choose this route. The doc says he’s not sure what to make of my Lyme tests but if I did have Lyme, he thinks the antibiotics I have done since should have knocked it out. I disagree. If it was disseminated at the beginning of treatment at six weeks after the bite, from what I’ve read, it could still be in my system and the treatment I would need is at least a month of IV antibiotics. This leads me to thinking that I must get another Lyme test before starting another peptide or mtx – in the end if Lyme is why I went into this crazy flare this summer then I will be wasting a lot of money and likely only getting worse doing a wrong treatment. Or perhaps I do have Lupus despite being ANA negative on my labs last winter (have not been tested since – current doc does not think this is the only diagnositic for Lupus) – I do have some of the symptoms aside from joint pain – hair loss, lung pain, muscle pain.

The integrative doctor has suggested that I get off doxy for at least a week (because of photosensitivity and because he says I test weak with doxy *sigh*) and try a therapy called Photo-oxidation Therapy/UVB where they would circulate my blood through UV light for about 45 minutes. It is commonly used for infections such as HIV, Lyme, and West Nile. I believe this could be helpful, though I’m not sure how much so as it would not treat my tissues. Also, it is known to create herxes, and right now I’m not handling herxing very well. Plus, I’m not keen on stopping ABX at anytime soon. Plus it is expensive. I wanted to mention it because it does sound interesting.

I did a meyer’s cocktail IV with methyl b12 and magnesium sulfate after the appt. for the first time with a major detox reaction. During the IV I had an increase in pain and swelling throughout my joints. When I got home I was wiped out and fell asleep for two hours. Later in the evening I felt better and had an overall reduction in swelling, but I thought this was an interesting reaction. I had expected to simply feel better right away. Guess that is not normally how things work with this disease, so I should have perhaps expected this.

Finally, my question is advice regarding prednisone. This doctor had rather me use low dose prednisone in the interim of finding an alternative effective detox/immune response treatment than using mtx. His thought is I could do a few mg of prednisone until I can try the lupus shot and then they can give me a shot along with the peptide to counter the prednisone and open up my receptor cells to the peptide. For those with experience with prednisone, how dangerous/difficult/effective do you think a dose of under 5mg might be for a few weeks?

Of course, in the end I must make these decisions, but I do appreciate feedback. The last post I wrote because I felt so vulnerable and weak after visiting the rheumatologist and being told I was not doing the right thing and that my thinking was completely off base. Considering how I’ve been feeling physically lately, it’s hard to not second guess oneself. Regardless, I have to figure out a way to control damage, pain, inflammation and fatigue and my current detox methods are not enough.

Thanks all,
Laura

[Krys]

Laura,
I’m not knowledgeable about peptides. I only read about them here on RBF. So I am only expressing my own subjective opinion.
I think your doc is very willing to milk you out of all your money and will be most happy if you comply!!!
He has not done any reading, even rudimentary, about Lyme disease and yet he pretends to know what will heal it. You are right on your money! Lyme bacteria do not reside in the blood for long and not in big amounts anyway. They immediately go for places where they can thrive: connective tissue, mucous membranes, organs, etc. Suggesting a very expensive therapy that will only lower the load in the blood, will not heal Lyme. Saying that you do not have Lyme any more because you took 6 weeks of doxy for a chronic infection….. Obviously he has not done any reading / research at all. I personally would run and stay away from such a doc!
@laurawm wrote:

He did a good deal of testing using the electric energy in my body…He puts a good amount of trust in the results. He had a nurse come in and hold one hand on my back while pinching together two fingers on her other hand. In my hand he would put different vials and then test the nurses fingers for strength holding together.

It sounds like muscle testing. From my reading it is as good as the person doing it. May be very helpful, but also may have lots of false results if the person doing the test has strong convictions about something he/she checks. Google the reliability of muscle testing and see how you feel about it.
Even blood tests are not always reliable. How reliable can be muscle testing that “proves” the patient should stop the treatment that the doc does not believe in and then “proves” that the patient should do very expensive treatment that will benefit the doc financially?

I did a whole bunch of tests on a German computerized machine with pre-programmed infections, allergies, etc. It checked on acupressure points my body’s responses. I think it was mostly accurate. I checked positive for a lot of allergies that I indeed had. The doc kept refusing to check for Lyme, saying I do not have it. But when she did check, I tested 82% positive! The further blood tests confirmed it. I tested negative for mycoplasma, but blood tests through IGeneX and LabCorps were positive. I tested negative for potato allergy and yet each time I ate any, all my joints would swell and become painful. The machine showed I was allergic (“reactive”) to 5 out of 7 anti-microbial herbs I was taking. I discontinued them and soon developed about 40 additional symptoms of Lyme, including severe brain fog and balance problems.
I kept doing computerized testing on a different machine with a different doc. Again many findings were immensely accurate. Some were deceptive. Some did not show at all. Last time I did the test, the doc told me I have no food sensitivities whatsoever. And when I laughed that I loved this result but unfortunately my brain, organs and joints feel like they are being damaged when I eat any gluten, dairy, etc., the doc got angry and started ridiculing me. He did me a great favor: I stopped lining his pockets with my money! 😆

the peptide I test the strongest for is the one that treats lupus…I do have some of the symptoms aside from joint pain – hair loss, lung pain, muscle pain.

Those symptoms fit many conditions. I don’t know what blood tests one should do to confirm lupus.

I did a meyer’s cocktail IV with methyl b12 and magnesium sulfate after the appt. for the first time with a major detox reaction. During the IV I had an increase in pain and swelling throughout my joints. When I got home I was wiped out and fell asleep for two hours. Later in the evening I felt better and had an overall reduction in swelling, but I thought this was an interesting reaction. I had expected to simply feel better right away. Guess that is not normally how things work with this disease, so I should have perhaps expected this.

I felt fabulous during the Meyer Cocktail IV. But the next day continuing for many weeks I was utterly exhausted and nothing seemed to help. There were some other reactions that I cannot remember now. We decided with my LLMD not to repeat this IV any more.

Finally, my question is /color]. This doctor had rather me use low dose prednisone …than using mtx.

I’ll leave it for somebody more knowledgeable to answer.

I had prednisone prescribed by the first doctor I saw.
Instead, I chose to use herbal anti-inflammatories and then also systemic enzymes. Together with diet and detox they are enough for me. Some people choose to use homeopathic remedies for pain. I’m a little surprised that your integrative doc is not familiar with many potent natural remedies! Sometimes heavy guns just have to be used, but I believe it is always worth it to try something more benign first. He could have tested your response to many of them and maybe it would have been positive!

Laura, I hope you will find the best answers to your questions and doubts and that whatever you choose, will work for you!
Warm wishes, Krys

[laurawm]

Thanks for your thoughts, Krys. You’re not alone in thinking that all the suggestions this doc are making will ultimately benefit him financially – but maybe I am just trusting and naive, but I do not get the feeling that that is his core motive. He is of retirement age running a successful practice – he does not need my business, and he is deeply kind and certified to the nth degree in everything he offers and talks about – he travels to Europe every year to be a part of a meeting of doctors and researchers who use peptides and other cutting edge treatments to treat rheumatic diseases. Having said that, I still believe I have Lyme and I do not believe he is knowledgeable in this area outside of acute treatment. He does offer the Neuroscience test though, and I believe this is a very good test for people who are not testing through antibody tests alone – this is the test that showed my elevated cytokine response to ospC two weeks after the bite and what urged me to start back on antibiotics – if I do have Lyme – my cytokine responses as well as my overall blood profile tested through this lab should come back markedly positive at this point, so I am considering retesting despite the cost. This doctor generally refers out for primary Lyme treatment if someone tests definitely positive after the acute phase as he does not want to be involved in the politics of long term Lyme treatment. Apparently he knows one of the NC docs who lost his medical license for long term Lyme tx. Using his energy testing method, he says I do not test positive for Lyme, but I am not willing to put a great deal of weight on this assessment.

I am thinking about fasting or at least cutting out all grains and carbs for a few days and seeing how this might help. I am in terrible pain today and cannot move at least four of my major joints plus general swelling in almost all other joints. I probably should tone down my abx/supplements, but I am afraid of letting critters get the upper hand. Right now I take 100mg doxy every night and tons of herbs/supplements not all mentioned in my sig line – one I believe has a particularly potent effect is baicalin – it is a Chinese herb recommended by this doc known to fight infection -the doc knows I believe I have a bacterial allergy, and says he has seen this in RA before, but is unwilling to say it is the common cause or that he is sure that is what is going on with me, but he seems to take my herxing accounts seriously, if not with full belief. Anyhow, I took baicalin in the spring and it always increases my bowel issues (killing good bacteria? or killing off bad? not sure) and increases my herxing. I started back on it after my appt. last week and I am in quite a state these past couple of days. If fasting proves ineffective, I will likely take some low dose prednisone. Isn’t this what Dr. Brown did with his patients? I never wanted to take steroids, but something’s gotta give.

thanks again,
laura

[lynnie_sydney]

I am thinking about fasting or at least cutting out all grains and carbs for a few days and seeing how this might help.

Laura – the fasting option may be a good idea – although I’d be careful over a few days. You may wish to sip on vegetable juice rather than completely eliminate. However with grains, you wont notice anything different in a few days because of the half life of antibodies produced. Generally will take several weeks to notice any different if you are sensitive to gluten. If you are in alot of pain, have you considered coffee enemas? Others have found these to be wonderful when in alot of pain.

Maz has listed a collection of detox methods (link below). Be careful to go slow with these though – one at a time probably best option.
viewtopic.php?f=3&t=301&p=60610#p60610

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)

[laurawm]

Hi Lynnie – thanks, I didn’t know that about the half life of antibodies with food – I’ve been gluten and dairy free now for almost a year. I rarely cheat, but when I do, I always regret it. Too bad, I really liked my bread and butter. 🙂

I would like to try the coffee enemas – guess it just seems a bit involved and when I tried once before it technically didn’t go so well (as in quite a bit of a mess in my bathroom – I found it difficult to hold the recommended amount of liquid in my body). 😳 Plus, they recommend doing it right after a BM, which is difficult for me to coordinate considering I have two little people running around depending on me all day – if I could do it at night after they go to bed so long as I have regular BMs during the day – would this be okay? I guess it wouldn’t hurt to try.

Thanks again,
Laura

[Krys]

Laura, I’m sorry if I hurt your feelings with my harsh assessment of your doc. And thank you very much for an extensive description of your doc’s caring and great proficiency in his field! What a relief that you have reasons to trust him.

I hope PhilC will see your post and advice on prednisone vs mtx. Yes, it was discussed lots of times, but I have not paid much attention. Sorry.

Many people combine abx with steroids. That is often the only way they can stay on AP and treat the infectious cause of the disease.
It IS mentioned again and again that if inflammation is severe, abx cannot penetrate the tissues and do their job, then any anti-inflammatory, including the steroids, will help patient with the pain while enabling the abx to do the job.

I used steroidal and a combination of homeopathic and steroidal shots on my thumb and have been grateful for it. It worked!
@laurawm wrote:

I am thinking about fasting or at least cutting out all grains and carbs for a few days and seeing how this might help. I am in terrible pain today and cannot move at least four of my major joints plus general swelling in almost all other joints. I probably should tone down my abx/supplements, but I am afraid of letting critters get the upper hand. Right now I take 100mg doxy every night and tons of herbs/supplements not all mentioned in my sig line – one I believe has a particularly potent effect is baicalin – it is a Chinese herb recommended by this doc known to fight infection -….. I took baicalin in the spring and it always …increases my herxing.
If fasting proves ineffective, I will likely take some low dose prednisone. Isn’t this what Dr. Brown did with his patients? I never wanted to take steroids, but something’s gotta give.

Fasting should help you with pain and inflammation but if you are in severe pain, it may not be enough. Green juice fasting may better help to draw out the toxins. Many people do a short abx wash-out when in severe pain and focus on intense detox, strict diet (like just raw juice fasting), supporting the liver and anti-inflammatories.
If I was in such severe pain, I think I would consider prednisone for a few days at least, while doing other detox and other anti-inflammatories at the same time (unless its contra-indicated: I don’t really know if one can combine anything with prednisone).
Have you considered coffee enema? It is really great in bringing pain relief and quelling inflammation down quickly. Imagine having your glutathione raised 600-650 times while all your blood is cleansed of toxins 5 times during the time the enema is doing its job! Doing it even more than 1 time a day during the intense pain, should really help.

I’m not sure if I would take baicalin right now if it caused big herxing in the past. maybe waiting until the pain is over would be a good choice?

I’m on anti-inflammatories basically every day, though the dosage is always increased when the inflammation is high. When it is big (which happens every time I eat dairy, anything containing corn, gluten, dyes or a lot of sugar) I go on vegetables only diet(raw green juices and raw veggies for just a few days), make sure to take Quercetin and Curcumin 3×3 caps a day, add Bromelain and ginger, may add Cayenne for pain. I take them with food and other supps. Then 2 hours later, on an empty stomach I take systemic enzymes 2x a day and 1 additional time I take 20 Chlorella caps (or other toxin binder, though Chlorella and Cholysteramine work strongest for me). I may drink some detox teas. And I will use at least 1 additional detox: either a coffee enema or detox bath or if not severe inflammation, detox foot soak. My inflammation is down within 1 or 2-3 days. I continue on increased quercetin and Curcumin, ease up on systemic enzymes/toxin binders to 1x a day, do only foot soaks and keep this program for a week or more. Then ease up more to a maintenance dose + an occasional toxin binder (usually weaker one than Chlorella), almost daily green juice, occasional foot soak, a few times a week ImmunoPro.
It works for me really well.

I hope you’ll receive more answers and you feel better soon,
Krys

[laurawm]

Hi Krys – not offended at all. It takes a lot to truly offend me – at a certain point in life when you’ve lived through enough, things just don’t get to you so much – you probably know what I mean. I’m relatively young, but long before I knew I had RA I felt old from all the living that got packed into the first three decades of my life – much good – travel, family, gluten and dairy :), but much tragic as well. I too question this doctor, not just his motives, but what he recommends. My hunch is he has decent intentions but has not figured out what is going on with me (not that I have). I’m in the process of setting up appointments with some new doctors, but they are all booked out for several months.

Thanks for all the detox info – ah! so much to try and more disciplines to instill. Sometimes I feel rebellious and disciplined out – I spent most of my youth living way too strictly and have been trying to loosen up ever since, and then, bam, no wheat treats, no dairy, fasts, and everything else, you know. Just tired. But when you are desperate you find strength you did not feel you had – you did not want to have to have – and you push yourself to find a way that you believe in, even if that means more sacrifice. I know a lot of this is I just to do not want to accept being sick and I absolutely do not want to take drugs that damage my body and make me dependent and cut off other treatment options. Yet here I am, not well, with my body being damaged in the mean time regardless. I wish I had Harry Potter’s magic wand and could just wish it all away. I need a blog for all of this, I am digressing.

Thanks again,
Laura

[Krys]

@laurawm wrote:

coffee enemas….they recommend doing it right after a BM, which is difficult for me …if I could do it at night ….so long as I have regular BMs during the day – would this be okay?

When the bowel is not empty, one starts first with warm water enema to help empty the bowel. To avoid the mess, stay in the bathroom, lying on a dark towel right by the toilet. Have some paper towel handy.
After you’ve emptied the bowel, do the coffee enema proper. If doing it at night, make sure the coffee is exactly the body temperature. Colder temperature coffee is more difficult to hold for 20 minutes. Warmer (like slightly warmer) is much easier to hold but possibly more is absorbed into the membranes (not just the liver vein) and the blood pressure may be raised and make sleeping difficult. Exactly body temperature coffee should not cause the raise in blood pressure. If done at night, maybe stick to smaller amount of coffee, like 2 TBSP instead of 3. Good luck!!!
Krys

[laurawm]

Thanks, Krys. I fasted today and did experience a great reduction in swelling. I do not fully understand this, but it’s nice to know it helps when desperate. I also tried the coffee enema. I was only able to do it for about five minutes with regular strength coffee, but afterwards I noticed that same leaded limb fatigue come on that I experienced after the meyer’s cocktail. I laid down for a few minutes and felt better when I got up. I’m not sure of it’s overall effect considering the fast, but I will try it again soon for longer. The doctor has prescribed me 20mg prednisone 1st week, 15 2nd, 10 3rd, and 5 afterwards till I either try a new peptide or wean off totally. I do not feel good about this. Not sure what I’m going to do. It sounds like a high dose with a steep taper, but he says it’s a moderate dose with a taper that can be handled if I have not been on it for awhile. I am going to have another Neuroscience test done tomorrow – I need to get the Lyme question answered one way or another so I can move on to the right treatment.

Thanks,
Laura

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