Test results

[laurawm]

Hi everyone,

I got my peptide screen back today as well as the most recent Neuroscience Lyme test. The Lyme test was positive p100 (protein specific of B. burgdoferi – apparent in late immune response to B. burgdoferi), VlsE-1 – another Borrelia protein response, and DbpA, – allows the spirochete to bind to host cells, glycosaminoglycans and colonize in the joints and skin.

But… another Western Blot came back all negative and so did a cytokine response panel. The test says that these results overall show exposure to Borrelia but with no current inflammatory response. Problem is I had been fasting for over 36 hours coming into this test and my inflammation was low. I knew this wasn’t the best time to have the test done, but I’ve been needing definitive answers to know where to go with my treatment. The doctor is still unconvinced by these results.

The peptide screen says I have inflammation on the receptors on certain brain cells that have triggered an immune response that is producing antibodies that are attacking my joints. The lab also said they thought I would benefit from an additional shot that would facilitate conversion of cholesterol into estrogen as there is evidence of an hormone imbalance.

So, I have to make some decisions. It would seem that the screen results could directly be tied to an ongoing infectious agent, though this is not how it was presented to me. Regardless, there is the possibility that this peptide could turn off my immune response effectively. I can continue with antibiotics but have to take a 3-4 day break every three weeks in order to do the peptides. Not sure what to do. I need to take my Lyme results to an LLMD to look at more closely.

Also, the doctor agreed to LDN so I will try that tonight and I asked him about melatonin and he said he did not think it to be contraindicated with RA.

If I do the peptide shots I have to wait till the end of the month for the previous peptide to be out of my system six weeks.

Thanks all,
Laura

[cavalier]

Laura – I know from when I did my peptide shots 3 of em I had to do the same go off AP for 3 days on the 4th then giving the shot. It is doable. The question is if the new one will work as you say you have to ride it out while waiting so I found myself in that time frame as you are now waiting & I was not getting better & I had really scary feet close to gangrene at that point – they were relapsing backwards. So I like you started in with LDN as a filler in the meantime til I could even begin to think of doing more testing for a new peptide for a maybe it along with melatonin worked for me & then adding in the thyroid med for my low thryoid helped get my immune on track again but that is me & everyone can differ.
In the end my filler med which I had no idea if it would help did all you can do is try it & see. Give it a few weeks of a go to see how things settle in for you. I am not much help but I get the frustration – let us know how things go for you.
I wish I had tried it sooner for me, but maybe I shoul dask if there is a peptide for PH who knows. Interesting the findings they came up with you have time to see how things go for a bit before pulling the trigger to get the new peptide in i think.
Best – Jill

[laurawm]

Hi Jill,

I think it is worth sending off for the analysis, if for nothing else than the information received. My understanding is that a peptide can be created to treat a great variety of conditions, so perhaps it could help. It took over three months to get my results.

I made an appointment with an LLMD and ABX doc today whom I can actually see next week (about time!). I hope this will help me get settled into a treatment where I feel comfortable and make some progress. If I had not gone off ABX in the spring, I would not be in this situation. I cannot make sense of it all as all I’ve been trying to do since the beginning of this is find the best treatment that works with my body’s natural instinct of healing and returning to equilibrium. I tried to follow my current doctor’s advice and do a completely alternative route, and perhaps this would have worked without the tick bite equation, but I’ll never know. I have a great deal of regret and confusion and shock that I am trying to come to terms with, but in the end, I must stop fighting what is behind me in order to move ahead.

I’m so glad you are making progress, Jill. How encouraging for us all!

Laura

[Maz]

@laurawm wrote:

I made an appointment with an LLMD and ABX doc today whom I can actually see next week (about time!). I hope this will help me get settled into a treatment where I feel comfortable and make some progress. If I had not gone off ABX in the spring, I would not be in this situation. I cannot make sense of it all as all I’ve been trying to do since the beginning of this is find the best treatment that works with my body’s natural instinct of healing and returning to equilibrium. I tried to follow my current doctor’s advice and do a completely alternative route, and perhaps this would have worked without the tick bite equation, but I’ll never know. I have a great deal of regret and confusion and shock that I am trying to come to terms with, but in the end, I must stop fighting what is behind me in order to move ahead.

Laura, well done getting yourself in to see a LLMD. I hope the LLMD is experienced and can provide the insight you need right now. It is very hard to be in constant pain and afraid in terms of making any decisions, so I really give you kudos for getting this far. I could hardly think straight when I first got sick and making any decision was almost impossible. In my case, I guess I was just lucky to find the right doc and to get on treatment for my Lyme right out of the gate. The path has not been quick or easy, I will say that, but I know I would have been much sicker had I taken the conventional route.

No test for Lyme is 100% accurate…this is the most challenging thing about Lyme and usually the sickest folks have an even harder time proving positive. You have one test showing exposure to Bb…guard this one test with your life, because any evidence of exposure to Bb (clinical or laboratory) is enough for any experienced LLMD to treat in addition to symptoms and history. I think it is also reasonable to assume that the doc who ran the test is not in any way Lyme Literate, because he would know this. Every doc will have their special focus, too, so as patients we also have to weed through what treatments are actually going to work and what treatments we may have become invested in (financially, mentally and emotionally) that may or may not be working. It can be very challenging to believe a treatment is going to work, spend thousands on the treatment and then to admit it didn’t have any effect at all – both doctors and patients can have a hard time with this. This can happen with any treatment, including the 20% that Brown had difficulty finding answers for. We are each so unique and, above all, I have found, personally, (and sometimes after the fact) that I need to keep an open and discerning mind if I am to find answers, as science just doesn’t have all the answers yet.

One thing expert LLMDs will confirm is that any past exposure to Lyme means that one will carry a piece of that bug in them throughout life. It is an impossibility to think we can totally eradicate Lyme, especially when immune function is struggling, and it is one of those diseases that waxes and wanes – can look like it is dormant and then repeatedly re-emerge. LLMDs will use the CD57 test, specific to how the immune system is functioning as a result of Lyme, and can often provide evidence of Lyme when no other test has been conclusive.

It is so hard to know in advance if a person with Lyme will recover quickly or require treatment for the long-term or even life. This is not to dishearten you, but just to express that there is very often no straight line to a return to full health when the Lyme mix is implicated, but expert LLMDs are very good at what they do and will use whatever they can in their arsenal to get us well again, however long that takes.

Just wanted to send you some support, Laura, as you move forward in trying to figure out your optimal treatment plan. Hang in there and try to be kind to yourself, because it really is hard figuring all this out when we are so sick…and then making the financial investment and waiting to see what will work or not. You’re doing GREAT to have got this far. 🙂

[laurawm]

Thanks so much, Maz. I would never have gone down these roads without finding you all and I likely would have been on traditional meds and still gotten the tick bite and have had no idea how to handle it and be working with an already suppressed immune system from whatever drugs I would have been on – so it definitely could have been worse. I am so thankful for the support here.

I made an appointment with Dr. J’s PA – she is not booked way out as she is still establishing her practice here. She used to work for Dr. B in Asheville and then went to work for Dr. J in D.C. and now still works with him but also in Asheville – and she had undiagnosed Lyme for 6 years so she is very empathetic it seems from the phone conversations we’ve had. If I need more care than she can give, I can travel to see Dr. J or see Dr. B here in Asheville, but she seems very competent.

What I didn’t mention is that the screen lab did look for antibody attachment sites in my blood for Lyme and did not see them so they told my current doc no to me having Lyme. I do not claim to understand completely, but isn’t it possible that I have basically just not made that many antibodies or that when this blood draw was taken I still had a broad spectrum peptide in me plus doxy that could have suppressed it? I don’t know, but I do know this is why the doctor does not think I have Lyme despite my other results and the low cytokine response which I’ve already explained was likely due to fasting – which he did say could have caused a low cytokine response. Aah. So tired of spending money on testing that does not seem completely clear. One things for certain, my immune system is not in good enough shape to test well on standard antibody tests so I need to keep looking at different methods for future testing.

I am still worrying about my joints at my current level of herxing. Sometimes there will be a morning that I forget to take my meds until almost noon and I will be feeling really pretty good at that point and then I will think, oh, I forgot to take my medicine – no wonder. My pain and reaction to meds has become quite predictable only slowly changing as certain consistently swollen joints go down in pain and inflammation.

Thanks again,
Laura

[cavalier]

Laura I hate making assumptions but I would tend to defer to the doc who had Lyme herself as to her take on things. Too many J names so I am not sure if she is the one who says she does not think so. I would ask if you were on AP during this test if that would cloud the issue as IGENEX was very clear on their site you should be off AP for 3 weeks before getting a Lyme test – this is what when I then got my IGENEX positive test.

For me like you I have to select what to spend money on each month – this month I will spend on the CD57 to see because if I was able to get into remission for SD I think it is logical to check now to see where that is at – to give me a indication so I know if I should still be on AP or not for that. I am only on LDN, melatonin 30 mg’s yes 30 not MCG’s & armour thyroid medicine for T3 & t4 replacement besides supps. Depending on what that shows will tell me if I should press on for a indepth peptide look mainly as I have still PH to deal with and possibly peptides could help there I dunno – will remain open there although peptides were not the answer for my SD at all but everyone is different. I am on Lasix which I dont like for the PH until I can find something better.

Keep peeling back the onion, the nice thing about LDN is it is effective for Lyme diagnosed or not and it’s good for immune modulation as AP is but also good for the adrenals if imbalanced. As you work your way up u may get a better feel. Some doc’s do this for less issues they feel in my case we felt to hit it from the get go due to SD definitely took down swelling and has kept that at bay. Melatonin you are now on is a good antioxidant as well as immune modulation but is a good anti inflammatory which I had alot of I still have some levels there that are not normal yet in blood work so am working towards that still. Sometimes it is not precise in black & white but trying things that are safe to see how well they work for you. It’s not easy for sure! We keep on trying & moving towards the goal.
Hang in there – Jill

[Trudi]

Hi Laura–
I’ve been reading your posts with much interest because many of your symptoms are/were so similar to mine. I recently checked your supplements and notice you are taking Plaquenil (hydroxychloroquine which belongs to the quinolone family), cat’s claw and samento (both are herbal quinolones which have naturally occuring quinovic acid glycosides; these quinovic acid glycosides are what the latest generation of quinolone antibiotics, such as Cipro, are based on).

I started a thread this summer on the damages the quinolones can do:
https://www.roadback.org/forum/viewtopic.php?f=1&t=7460&p=62047#p62047

Just wanted to give you a heads up–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[laurawm]

Thanks, Trudi. I did read your post on this and have wondered about it. I guess I have been hoping that this is not a common occurrence as so many people seem helped by these supplements/drugs. I do take lots of magnesium, so I’ve thought this should help. I will look into it more – I do have a strong reaction to plaquenil and samento, but I have attributed it to herx responses. Thanks for the concern.

🙂 Laura

[Trudi]

@laurawm wrote:

Thanks, Trudi. I did read your post on this and have wondered about it. I guess I have been hoping that this is not a common occurrence as so many people seem helped by these supplements/drugs. I do take lots of magnesium, so I’ve thought this should help. I will look into it more – I do have a strong reaction to plaquenil and samento, but I have attributed it to herx responses. Thanks for the concern.

Hi Laura–
Glad you are aware and keeping this in mind. The magnesium is very helpful; however, I have recently read that too much can also cause pain. Can’t win 🙁 .

I, too, attributed my increased pain to herxing. It was the consistency and length of the “herx” that should have alerted my doctor. I was not aware of the quinolones until I stumbled across the Newshour segment and later the cat’s claw/samento connection. Yesterday I found out that plaquenil is in the quinolone family and decided to respond to your posts.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

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