posted
My symptoms have been gradual. I'm 29, male, from Utah. I think I have had some level of fatigue and brain fog, but not a lot, for about a year.
Then 8 months ago, I started getting HOT red kneecaps, mostly in the evening or at night.
Like, I would be fine the whole day, but then at night, they start feeling uncomfortable to stand on because the area is filling with blood. They would be like this regardless what I did. But no pain.
I went to doctors everywhere, I tested negative on every autoimmune test, RA test, biopsy. Still, my knees were getting hot nightly. NO pain. No evidence of arthritis on X-ray. And no hint of lyme from doctors, no idea what it is.
So then 4 months ago, I got costachondritis. Pain in the middle of my sternum region. It still lingers when I sneeze or lay flat.
THEN I started getting heavy, fast heart beating at night a month ago. My hands and feet started getting red and hot. And then with that, stress/emotions/depression. Irritability with onset of symptoms.
I got on doxepin to sleep through the night and I feel WAY better. Started taking supplements like magnesium, garlic, B12.
I went on a low-dose (3.75mg/day) prednisone for a few weeks, which actually helped my feet and hand issue go away when I tapered off. (They say this is bad to do, but I wasn't sure if I had lyme at the time, it was a low dose, and I actually felt better during and after I was off).
I went to an LLMD and they gave me the Pharmasan Labs iSpot test. I got positive, with a result of 147. My research tells me this is a new lab, not FDA approved, yet my LLMD says they trust it 100%. Fishy, no? But yet, don't I seem to have many lyme symptoms?
My LLMD didn't want to give me abx unless I needed them and gave me Nutramedix Samento and Lobelia to take everyday.
I have been the last 5 days and while my knees started getting better, now they are worse actually. I get irritable and fatigued when it happens, like I can't control it. That's not an RA symptom, is it? Again, no pain.
So... is this a herx?
The other thing is ALL the research I have found indicates that nightly inflammation can totally lead to arthritis if not treated with ABX.
My LLMD was unconcerned. It's only inflammation on the top of my knees, but still, I feel like this is different than typical lyme. If I don't want arthritis, I need to treat aggressively ASAP following a Buhner protocol, no? What do you guys think?
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(Breaking up your post into a couple lines at a time for easier reading for many here)
You definitely have Lyme symptoms. You need to be seeing a good Lyme doctor. If you are not satisfied, you can make a post in Seeking a Doctor for referrals to good LLMDs in your area.
Actually, Samento is cat's claw and that's a Buhner herb used for treating Lyme disease. Sounds like your doctor wants to go an herbal route, which is ok - many people do herbs instead, especially when they can't handle antibiotics.
Sounds like your LLMD is going the herbal route. Doctors do have different viewpoints. Some treat only with antibiotics, some treat only with herbs, and some do a mix of treatments.
Re treating aggressively, you need to be careful, because you may herx at some point, and that could be fairly uncomfortable - you need to be detoxing well to handle a herx. That's why I always say go slower rather than too fast, to see how you handle a treatment.
You can always use the Search function at the top of the page to type in any word or phrase and archived threads will come up that you can read through. For example, you could type in detoxing and read what all people discuss re detoxing.
We're not supposed to do steroids. But you know what's funny? You say you felt better during and after prednisone. I had an accidental cortisone shot in my knee once,
and what I mean by accidental is I'm actually allergic to it, and did react. But it made my knee feel so much better. So I think there is a place for simply saying how we felt after an encounter with a steroid!
I think the issue with Lyme and the knees is that it likes the synovial fluid there.
So here's what I do for my knees and the rest of it now - I take daily capsules of turmeric. I get the turmeric in bulk at the health food store and dip empty 00-size capsules into it and take a couple a day. I actually feel the pain diminishing fairly rapidly after taking a capsule.
So there's a simple idea for you to considering trying for some relief. We're all different in how we respond to anything.
My knees also respond to any treatment that involves magnetism. I use a little tool called a MagBoy - it's a magnetic roller and I just roll it back and forth over my knees and pretty soon pain is down.
I think magnetic input can play a big part in how we feel. It's one aspect among many interesting health observations as we go through this experience.
Last comment - treatment for Lyme occurs in three areas - kill/deter the organisms, detox, and fortify the body. I call it going to Lyme school to learn what everyone does in these categories.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- Closing in on midnight and my pumpkin is running out of fuel. One thought for now. More tomorrow.
Samento tends to help some but not others. But do not think of it as Cat's Claw.
To clarify something about Cat's Claw mentioned above, it is not at all the same as Samento. Samento (TOA-free version) is ALTERED Cat's Claw and does not have the same properties. In fact, one of the most important qualities has been removed.
Buhner actually does not use the TOA-free version but the original Cat's Claw. Stephen Buhner (master herbalist, author of several excellent books about lyme and tick borne infections) echoes / agrees with the author here on this topic:
posted
Keebler, do you know whether people have a major difference experientially with respect to the two different versions of cat's claw? I myself have no experience with either one.
Another question - aren't Nutramedix products supposed to be pretty good for Lyme patients?
Anyone here who can comment on your experience taking any of the above-mentioned products?
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- It seems that Samento can cause strong herx at the beginning, still . . . some either do exceptionally great with it over time (I've talked to a few for whom that was the case), or it just really never takes off for them to notice much good.
yes, some do great on the full Cowden protocol that uses the Nutramedix herbal tinctures. I never could afford more than one thing and when I used Samento, there was not even a full protocol, it was the first product.
I've used both Samento and the regular cat's claw.. At first, with Samento, even just a couple drops really clobbered me (in a half glass of water) so I thought it must be on the right path.
Then, as I gradually increased over time, I went through a couple bottles - at great, great cost and it did zero for me. I was no better off and so much poorer.
Years before that, I did use regular cat's claw, as a support with other herbs but this was before lyme was diagnosed and certainly the few times I used it before and after diagnosis, none of the guiding NDs was at all lyme literate.
I recall (the real) cat's claw tincture helping calm my nervous system (Samento has that element removed - for reasons they explain).
It depends on what works for each person. Just know, though, that they are different.
fvertk,
Are you on the full Cowden protocol - or are there plans to expand onto it?
If your doctor has only that approach, though, I do suggest finding a LL doctor who has a wider approach with more options than what you've been offered. -
[ 06-10-2016, 03:56 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
- This might answer some of your questions.
posted
Well, I should say that my LLMD is flexible. She said she prefers to do things herbal, but she would be willing to prescribe antibiotics if that's what I want to do. I was just curious about you guys' opinion here. Because every other aspect of lyme is mild for me. I don't really have THAT much fatigue. I don't have THAT much brain fog. I never feel ill really. To the point where I question if I even have lyme (and all I have is an iSpot test to prove it, which is a very sensitive test). I wonder sometimes if I'm searching for symptoms simply to explain why my knees get hot nightly.
And my symptoms with my knees seem to be very rare here. The only person I know who has gotten both knees just getting red and hot on the TOP only (no pain) is a girl who started this blog: lymelymelyme.blogspot.com
I would be down to slowly heal from herbals, but I feel like my LLMD's aren't considering the inflamed knees and how urgent it is to take away that inflammation. I don't want arthritis. I don't think it has developed into that, and I'm not sure if it will (because it's the top of the knees) but it very well might.
Nobody I know of has my symptoms, that's why I'm falling back on lyme. Again, there is no pain. Everyone else who has something wrong with their knees and lyme tend to have pain. So I'm very confused.
Posts: 16 | From Utah | Registered: May 2016
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We're not supposed to do steroids. But you know what's funny? You say you felt better during and after prednisone. I had an accidental cortisone shot in my knee once,
and what I mean by accidental is I'm actually allergic to it, and did react. But it made my knee feel so much better. So I think there is a place for simply saying how we felt after an encounter with a steroid!
I think the issue with Lyme and the knees is that it likes the synovial fluid there.
So here's what I do for my knees and the rest of it now - I take daily capsules of turmeric. I get the turmeric in bulk at the health food store and dip empty 00-size capsules into it and take a couple a day. I actually feel the pain diminishing fairly rapidly after taking a capsule.
My knees also respond to any treatment that involves magnetism. I use a little tool called a MagBoy - it's a magnetic roller and I just roll it back and forth over my knees and pretty soon pain is down.
I think magnetic input can play a big part in how we feel. It's one aspect among many interesting health observations as we go through this experience. [/QB]
Thanks for the welcome and appreciate the response.
Yeah, reading about steroid use has been sort of confusing. Per Buhner, lyme loves to live on cytokine cascades / inflammation that your body generates. It thrives in it, according to him. A low-dose steroid or topical steroid does not suppress your immune system entirely, only partially.
My high-level reasoning is that you would be preventing that cytokine cascade while still having an active immune system, hence why I felt better during and actually improved after. I had some neuropathy in my hands/feet that went away after I got off.
I don't know if many differentiate between low-dose and the typical high dose, they are quite different. Still, that is one of the things that made me think THAT aspect of my body may not be lyme disease.
Interesting to hear your techniques. I do not have any pain at all, just inflammation on the top of my knees, so I wonder if that would work for me.
I tried tumeric with no luck, in quite a few different forms. It just doesn't affect the inflammation.
Cooling, like aloe vera put on it, takes it out easily. And I have full range of motion too. So yeah, I'm very confused.
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(breaking up the post for easier reading for many here)
posted
I also want to add that my LLMD did the iSpot test, which I don't know if any of you have validated whether it actually is useful. The FDA certainly hasn't. And yet, are we supposed to trust this extremely sensitive (aka false positive rampant) test?
The thing that is very sketchy to me is my LLMD said 90% of patients she has ran the iSpot test on have tested POSITIVE. In UTAH.
Perhaps 90% of people that think they have lyme disease actually have it. OR the test is incredibly sensitive and thus leads people down a path of spending tons of money at that LLMD. It is to their interest to keep patients. You can tell I'm a bit skeptical.
Anyone know anything about iSpot?
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(breaking up the post for easier reading for many here)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A low dose of prednisone was helpful ONLY the first time. After that, it was very damaging to me - the second time I took it -- and the third it nearly killed me. Shots in joints also caused major full body trouble for long time afterwards. (I had no idea then about lyme)
Sometimes, luck can just be on board. But I would never push that luck now that lyme is clearly on board. And steroids have other risks such as bone loss, etc. More detail here in case you need it for the future.
There are much safer ways to address inflammation.
You searched for keywords: 'iSpot' | 7 matches found
you might also search in the general forum -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You wonder: "The thing that is very sketchy to me is my LLMD said 90% of patients she has ran the iSpot test on have tested POSITIVE.
In UTAH. Perhaps 90% of people that think they have lyme disease actually have it.
OR the test is incredibly sensitive and thus leads people down a path of spending tons of money at that LLMD. It is to their interest to keep patients. You can tell I'm a bit skeptical." (End quote)
This is not just a random, off-the-street survey. By the time someone gets to a LL doctor, they have likely been through a great deal with health issues and likely have eliminated other possibilities.
90% of the people the LLMD tests -- is not the same as 90% of the general population. Most have already been through many "hoops" that pointed to lyme being likely before the test.
so "Perhaps 90% of people that think they have lyme disease actually have it." (end quote)
That seems perfectly logical, actually. They are ill, they've done the work to figure out the most likely cause and most are right by the time they get to the test. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Right, of course. But even still 90%(!). My point is, a test described as highly sensitive correlates with at least a certain percentage of false positives.
My LLMD does not believe the iSpot can return a false positive. At all. She thinks it is 100% accurate. She didn't dispute it whatsoever.
This is without any objective field analysis being done on the test besides the makers themselves. If this is the case, why aren't all LLMD's using the iSpot?
I'm just saying, things seem fishy to me Keebler. LLMD's should be fairly wary to diagnose solely based on serum tests, positive results or negative.
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(breaking up the post for easier reading for many here)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Diagnosis is not solely on tests. A patient's physical symptoms / presentation (how they can get along in life in their body), history, etc. also are considered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Also, good to hear your experience with steroids. That's interesting. How long did you do each treatment? Also, did your knees initiate with pain or did they start as red/hot and then progress to pain? Was/is your inflammation just on the tops of your knees, not on sides/back?
Posts: 16 | From Utah | Registered: May 2016
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quote:Originally posted by Keebler: - Diagnosis is not solely on tests. A patient's physical symptoms / presentation (how they can get along in life in their body), history, etc. also are considered. -
Agreed. That's how it should be done. That's what I'm saying. Honestly, my LLMD barely even glanced at my symptoms. It was slightly jarring. She then told me that after taking herbals, one of her patients can mow her lawn now. Like she was reciting a salespitch. I'm 29. I can mow 50 lawns right now if I wanted to. I could see right past her. Maybe I just found a bad egg, I don't know. But due to her confidence in the iSpot, I now trust the iSpot even less and am still wary that I have lyme. I'm going to do other tests still to confirm this.
Posts: 16 | From Utah | Registered: May 2016
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Keebler
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posted
- I have know others who had great relief with Samento. Really. They got nearly miracle results after long illness. It's just that its failure with me cautions that not all are so lucky. Hope that you are, still, consider what's next, the full Cowden protocol - or other ways.
TURMERIC CAPSULES might help you knee inflammation. Chlorella might, too.
Is your doctor a member of ILADS, ILADS "educated" and up to date with their recent / current presentations, etc?
It is really important, not so much to be a up front member but to attend or otherwise study all the presentations, and to have had the ILADS physician training course.
Even if they use other methods to treat, it is really vital they have grasp of the issues / education through ILADS
Not every person claiming to be a "LLMD" is really one. She may be but do find out more about the training received & from whom.
Talk to those in all your area lyme support groups within a 100 miles radius to your location.
The iSpot might be a good test. Do call ILADS next week, though, and ask if they can help you in your research of this regarding what the ILADS members might think.
You have worry about "false positive" possibility.
With the exception of just band #41 on a western blot (which could also be other spirochetal infection), [I think it's that number]
I don't "believe" in false positives. If a test "sees" or "reads" evidence of lyme, that is there to see, or read.
It's the false negatives that are the major problem. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yeah, I'm on the same page. It hasn't been doing much for me, but the Cowden protocol and other stuff is on my long list of treatments. Not giving up hope.
Plus, the only thing I'm ultra concerned about are my knees. I totally can live with everything else.
Great idea on calling ILADS. Not sure about my doctors credentials. I'll update here on what ILADS says because I'm sort of ticked at how hard it is to validate the authenticity of this test's results.
Regarding false positives, that is the typical mindset towards lyme tests, justifiably. But that's exactly why the iSpot exists and exactly why it's overly sensitive.
On their webpage, they mention that they are trying to make up for the false negatives of the WB. Plus, their test is done a little differently, so it may be more prone to false positives. The existence of tests like this might change how we view positives in lyme testing.
Many lyme doctors say that any test that makes the claims of the iSpot is bull. I'm sort of prone to agree. I need to read more about it and do more tests on myself to learn more.
My only thing is if I get a false positive for lyme and I actually have rheumatoid arthritis, I'll go through life treating lyme AND RA, which sounds quite terrible. Especially as the immuno suppressive drugs of RA supposedly make lyme worse. That is my ultimate predicament.
Posts: 16 | From Utah | Registered: May 2016
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Keebler
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posted
- rheumatoid arthritis is most often caused by lyme, other tick-borne or other chronic stealth infection. Immuno suppressive drugs are a ridiculous thing for something that usually has infection as the cause.
Also consider a gluten free diet and a genetic blood test for celiac - regarding any inflammation in the body.
you say you could live with all else as your knees are the main issue right now and you can do so much.
Just be aware that, for many, it starts at the knees - their first symptom -- and maybe not all the time, either. If lyme is on board, it seldom stays there.
I can't say that just right. I'm toast. Just understand how the progression can happen.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Don't worry, I'm still going to Buhner/ABX/Cowden these ****ers into hiding in my body.
I am curious though, did you knees always have pain linked to them? Or were they just hot and red on the tops like mine? Do you know of anyone who has had knees just hot and red on the top, only nightly for an hour?
Posts: 16 | From Utah | Registered: May 2016
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Keebler
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posted
- While the lyme test is a factor to note (and you should be assessed for other tick-borne infections), in addition, if there are other factors, those with lyme can react much more (word loss, uh, way worse).
you might consider some kind of food allergy with your dinner. Oxalates, salicylates, etc.
Gluten can cause symptoms you describe, too, and those with lyme are often more reactive if they have gluten issues that previously went undetected.
Maybe avoid all foods and ingredients in any condiments for a couple weeks and eat other things after consulting a couple good charts for those foods / condiments containing high oxalates . . . and salicylates.
Personal care products? If you cuddle with another person (or a pet), consider their stuff, too.
Exposure to furniture that contains fire retardants is a VERY important consideration. New curtains, pillows or any textiles? Even if you do not touch them.
Any mold in home? Potted plants can harbor mold, too.
chemicals used in home keeping . . . yard work . . . work (on lawns if you are around lawns)?
Air fresheners - even those awful ones to hang in the car . . . .
By now, I'm sure you've been instructed to avoid all alcohol and artificial sweeteners, processed foods.
Consider your environment regarding chemicals used &/ or mold.
If you are elsewhere during day and come home and then your knees react, consider all factors in addition to lyme. What did you come in contact with since early afternoon?
Clothing - permanent press or wrinkle free clothes (and bed linens) are loaded with chemicals . . . laundry detergent / dry sheets (avoid at all costs) . . . .
Do a diary for your knees, so to speak.
But, if there is swelling at the knees, you might want to have Igenex do a synovial fluid test ( of the fluid around your knee joints) if -- after you try to find out more about ILADS members' thinking about the iSpot and you seek a second test.
if you were to be tested for a couple other tick borne infections and any come up positive, that would also confirm likelihood of lyme.
Babesia certainly caused all kinds of redness, inflammation, heat & pain for my body that would come in huge heat waves, mostly at night.
I know all the things listed may seem just too far out in space, but, really, the chemical assault on our bodies is something that everyone is better off being aware of and limiting. for those with lyme, to steer clear can help recovery. -
[ 06-10-2016, 09:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I saw something the other day in a Facebook group about hot knees being a symptom of mold toxin illness.
Just throwing that out there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I wish i had treated when knees were my only issue...my microscopy friend says she sees spirochettes in 90 % of peoples blood some way more symptomatic than others.
..i believe mosquitos ,spider, lice,mites, and more can transfer this......try some Andrographis or ride or bvt if antibiotics are not the way to go...
I had absolute test comeback positive id duc said it was false so he didnt have to treat it . When i saw the s pirochettes under microscopy there is no denying it. And you may want treatmrnt to reduce these hellspawn .
Read thread here ,check you tube...proof in pudding
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It just doesn't affect the inflammation. 
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