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Test results help

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Lyme Disease
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 1:34 PM (GMT -7)
I know I HV lyme bart and strongly feel I HV Babs. Just gt bk test results my rbc and wbc are finally leveled out bt my ANA came bk low positive 1:40 titer speckled double stranded dna which can be systemic lupus, sjrogens syndrome which I'm positive I don't have rheumatoid arthritis and scloderma which I have no idea wt that it. A now positive c peptide test thing which was neg before. I don't know wt to beleive anymore between lyme and autoimmune diseases my docs are in total denial of.lyme and or bart and keep blaming it saying it must be autoimmune 🙄 my alkaline phosphatase is at its all time low went all the way down to 22 and I've been having more cracking fragile bones an grinding. I was a healthy 28 yr old wt gives. I'm also getting more red spots pin dot sized (petechiae) not sure if that's more bart or babesia usually. Was wondering if anyone can refer me to a good rheumatologist who isn't lazy if u get my drift. I live in CT and really need a good rhuemi thanks
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dcd2103
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Joined : Nov 2019
Posts : 1164
Posted 11/20/2020 1:50 PM (GMT -7)
Hey medical nerd. Your post is a bit hard to follow so let’s start over. Your ANA is 1:40. What was your double stranded dna? It was positive, and it so what value? Finally, what do you mean your c peptide was positive? If the values are super low they can indicate type 1 diabetes. What was your value?

1:40 ana is not very high at all and most people w infections often have low positives. If your dsDNA is positive that *could* indicate something autoimmune.

I would see Dr K in Orange, CT. He will know if it’s lyme or something rheumatological. He will be better than any rheumatologist you’re gonna see
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running wild
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Joined : Mar 2013
Posts : 1342
Posted 11/20/2020 3:16 PM (GMT -7)
dcd has a lot of god thoughts in his post. Also, if you do decide to see a rheumatologist, the most accurate for autoimmune indicators is the Avise test, and it might also be helpful to have your C3 and C4 checked.

It's easy to let the mind "get loose" when things are happening and read more into tests than might be the king of that, and I believe there are others on this site who do the same. As many have mentioned over the years, it's like having PTSD after finding out what can happen with Lyme. I would tell you to relax, but that would be very hypocritical on my part. But the ANA is on low end, and others with Lyme have had the same results.
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Garzie
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Joined : May 2017
Posts : 705
Posted 11/20/2020 3:25 PM (GMT -7)
i also have ANA low positives test results
and sometimes dsDNA low positive also

as dcd says this is pretty normal when you have infections like Lyme and co-infections

from my own experience - I don't think there are any rheumatologists that are very useful for chronic Lyme - perhaps it's different if you are in the USA - but typically i find they are all of the camp of " if you have joint pain and swollen joints - its an auto-immune disease".
and most are in denial of chronic infection. if you think about it, their profession pretty much depends on this outlook.

i have met one head of a UK hospital specializing in rheumatic diseases who was big enough to admit that they did not know much about Lyme and suggested private testing as a way forward, and even they dodged prescribing antibiotics when it came back positive.

purpura or smaller petechiae can be many things - bart, babs, viruses - not very specific, unfortunately.

i don't read about low Alkaline phosphatase here very often - typically it seems more often to be a bit high with lyme and co-infections - but recently it came up under pyroluria - but that in itself is a bit of a rabbit hole.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44156
Posted 11/20/2020 4:01 PM (GMT -7)
I think you should see an experienced LLMD for an evaluation.
Many have been diagnosed with auto immune diseases and treated lyme and recovered.

My LLMD (DrJ) has healed people with diagnosed of MS, Parkinsons and even ALS over the years.
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 4:20 PM (GMT -7)

dcd2103 said...
Hey medical nerd. Your post is a bit hard to follow so let’s start over. Your ANA is 1:40. What was your double stranded dna? It was positive, and it so what value? Finally, what do you mean your c peptide was positive? If the values are super low they can indicate type 1 diabetes. What was your value?

1:40 ana is not very high at all and most people w infections often have low positives. If your dsDNA is positive that *could* indicate something autoimmune.

I would see Dr K in Orange, CT. He will know if it’s lyme or something rheumatological. He will be better than any rheumatologist you’re gonna see

sry ill clarify as I'm a bit confused myself lol so my ana panel is 1:40 low I'll show test results below

ANA PATTERN Nuclear, Dense Fine Speckled A NL1
Dense fine speckled pattern is seen in normal
individuals and rarely associated with systemic lupus
erythematosis (SLE), Sjogren's syndrome and systemic
sclerosis.
DNA (DS) ANTIBODY 5 H (IU/mL) NL1
- IU/mL Interpretation
- < or = 4 Negative
- 5-9 Indeterminate
- > or = 10 Positive
-
F SM ANTIBODY <1.0 NEG <1.0 NEG (AI) NL1
F SM/RNP ANTIBODY <1.0 NEG <1.0 NEG (AI) NL1
F RNP ANTIBODY <1.0 NEG <1.0 NEG (AI) NL1
F CHROMATIN (NUCLEOSOMAL) ANTIBODY <1.0 NEG <1.0 NEG (AI)
C-REACTIVE PROTEIN 1.2 <8.0 (mg/L)
ALKALINE PHOSPHATASE 22 L 31-125 (U/L
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 4:22 PM (GMT -7)

running wild said...
dcd has a lot of god thoughts in his post. Also, if you do decide to see a rheumatologist, the most accurate for autoimmune indicators is the Avise test, and it might also be helpful to have your C3 and C4 checked.

It's easy to let the mind "get loose" when things are happening and read more into tests than might be the king of that, and I believe there are others on this site who do the same. As many have mentioned over the years, it's like having PTSD after finding out what can happen with Lyme. I would tell you to relax, but that would be very hypocritical on my part. But the ANA is on low end, and others with Lyme have had the same results.

I need more ppl like this to tell me.to calm down it helps lol was is c3 and c4? U mean the proteins?
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 4:25 PM (GMT -7)

dcd2103 said...
Hey medical nerd. Your post is a bit hard to follow so let’s start over. Your ANA is 1:40. What was your double stranded dna? It was positive, and it so what value? Finally, what do you mean your c peptide was positive? If the values are super low they can indicate type 1 diabetes. What was your value?

1:40 ana is not very high at all and most people w infections often have low positives. If your dsDNA is positive that *could* indicate something autoimmune.

I would see Dr K in Orange, CT. He will know if it’s lyme or something rheumatological. He will be better than any rheumatologist you’re gonna see

thanks for referral for dr.k I'll look Into it asap. I saw a dr. L in old lyme ct he was positive I didn't have lyme despite my very positive tests plus late stage symptoms saying there was no such thing as late stage or I would have exruciating RA and sent me on my way happily after bragging about how he was one of the 1st docs to ever work on lyme disease research smh
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 4:29 PM (GMT -7)
Low alkaline can be caused by a genetic bone and teeth disease called hypophosphatasia. I have teeth and bone problems and because of the really low alp on blood test am going to see a genetic doc. My grandma mom and sis all had teeth and bone problems so I'm going to definitely look into this it's interesting
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dcd2103
Veteran Member
Joined : Nov 2019
Posts : 1164
Posted 11/20/2020 4:35 PM (GMT -7)
These values aren’t necessarily indicative of lupus or Sjogrens, unless you had the symptoms. The Ana is very low and dsDNA is indeterminate. Remember, an antibody doesn’t equal disease. An autoimmune disease process is much more than an antibody. People can walk around their whole life times with an antibody but not develop the disease. The process takes mobilization of the whole immune system, the antibody is just one marker. It’s best to go by symptoms, and use the markers as confirmation. If you were getting lupus rashes or had dry eyes and Sjogrens neuropathy, then it may be more indicative. This isn’t to say that one of these diseases couldn’t develop later, however.

Bottom line is these types of low-positive markers are often seen in infections. They can, however, also be seen in non-specific post-infectious autoimmune processes like I have, or like covid long-haulers experience. Teasing out the difference takes experience and can be a trial and error process. There’s no one better than Dr K at that

Would second RWs comments. C4/c3 is helpful in diagnosing lupus, and the avise is a great test.

What was your c-peptide level? That is potentially important
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MedicalNerd
Veteran Member
Joined : Jun 2019
Posts : 509
Posted 11/20/2020 4:53 PM (GMT -7)
Guess I get so annoyed when I HV positive lyme test bt they keep saying I don't HV lyme and that I must HV lupus or another autoimmune because my ana is so low I'm not a doc so I have to deal with the docs oppinion. I do have ehlers-danlos syndrome which I guess is a connective tissue disease bt idk if it would be considered autoimmune . I do have all the symptoms of lupus like then red butterfly rash which is subtle the docs almost missed it and dismissed me. I have to say I may have lyme and lupus who really knows I mean if u think about it sida acuta and japanese knotweed probably work for lupus symptoms and flare ups
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dcd2103
Veteran Member
Joined : Nov 2019
Posts : 1164
Posted 11/20/2020 4:57 PM (GMT -7)
Oh, hm, that changes things then. EDS is highly correlated w autoimmunity, for reasons they don’t understand. Butterfly rash is an important clue too.

You def need to see a dr who understand this stuff. Not to bear a dead horse but I can’t emphasize it enough, Dr K is your man
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saraeli
Forum Moderator
Joined : Jan 2019
Posts : 2344
Posted 11/20/2020 6:23 PM (GMT -7)
An EDS diagnosis and butterfly rash (indicating lupus) sound like important pieces of this puzzle, to me. Lyme can exacerbate these, but people with EDS alone can have many of the symptoms we talk about with Lyme. EDS can look a lot like Lyme; I'm not saying that you don't have Lyme, just that EDS tends to be a major factor in the lives of those who have it, even with no microbes involved. The bone issues and vascular issues you describe are very common with EDS. I'm glad that dcd had a doctor recommendation for you. It can be so difficult to tease out what's what. I definitely understand your frustration with feeling like a healthy young person and then developing all these issues. I hope that you get some clarity soon about the best path forward!
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WalkingbyFaith
Veteran Member
Joined : Aug 2017
Posts : 5653
Posted 11/20/2020 7:43 PM (GMT -7)
There is a connection between CIRS and Ehlers-Danlos.

See here starting at 01:09:20 towards the bottom https://www.moldillnessmadesimple.com/mast-cells-and-mold-illness-with-dr-jill-carnahan/

Some really good stuff here in this article by Michael McEvoy, who is mentioned in the first link as the expert
https://metabolichealing.com/hyper-joint-mobility-eds-collagen-histamine-cirs-implications/
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