Lyme community says we all have it

[wastwater]

Isnt mycoplasma a better candidate rather than lymes,especially for uk folk,is it a similar treatment anyway.

 

[Tired of being sick]

If your Lyme test is not at the positive number but it is above 0..

What does that mean?

I would think that a negative Lyme test should be 0's across the board

 

[justy]

If your Lyme test is not at the positive number but it is above 0..

What does that mean?

I would think that a negative Lyme test should be 0's across the board

My infectolab LTT was 111 with more than 2 being positive. My M.E and Lyme literate doc still thinks I have Lyme and described 111 as not exactly negative - I don't really understand what that all means...

 

[Daffodil]

cfs being lyme certainly doesnt hold up to koch's postulates. the antibiotics could be working on the gut flora/leaky gut bacteria. this is the main thing that bothers me daily now....not knowing beyond a reasonable doubt, what i am treating. yes, LTT was positive, but many have active infections due to weakened immunity from autoimmune process. just cant stop ruminating about this all day!

evidence to show that the abx could be working on gut is, bloating/gas/cramping stops when i take the abx...one person i know almost recovered on xifaxan, a gut antibiotic, and one almost recovered on Daosin/Histame.

in chron's, autoimmune process attacks gut lining, causing bacterial infections, which lead to chron's. treating these infections often results in repaired mucosa. maybe this is similar to what is happening in us (and antibiotic trials to treat gut infections, are going on for MS too).

i had die-off from clarithromycin, which acts on h. pylori.

most chronic lyme sufferers stop abx, and the disease returns, indicating the autoimmune process is still alive and well.

is lyme causing gut issues or is autoimmune process (triggered by infection such as EBV?) causing gut issues and weakened immunity causing active borrelia?

why do they say people who give up dairy often recover from lyme quicker? could this have to do with Mycobacterium avium paratuberculosis (cause of chron's) or some other bacteria being spread by milk, causing our gut issues?

 

[Daffodil]

there have also been clusters of chron's showing up in places..just like CFS..so mycobacteria can spread

 

[Charles555nc]

cfs being lyme certainly doesnt hold up to koch's postulates...Mycobacterium avium paratuberculosis (cause of chron's) or some other bacteria being spread by milk, causing our gut issues?

I suspect that lyme/chronic lyme is a widespread intra cellular infection. Clindamyacin worked the best for me until it stopped working, and it worked intracellularly. I think the cutting edge for lyme would be liposomal vancomyacin, working intracellularly, and working on antibiotic resistant bacteria.

MRSA doesnt clear macrophages until a "pegylated" liposome vancomyacin is used to get inside the macrophage. http://www.ncbi.nlm.nih.gov/pubmed/21130608

And then theres this regarding vancomyacin and lung tissue: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3186981/

 

[Charles555nc]

Isnt mycoplasma a better candidate rather than lymes,especially for uk folk,is it a similar treatment anyway.

Theres definitely european lyme disease...and there is suspicision that it can be transmitted like syphilis, which it is related to. Probably takes a long time to see symptoms afterward...

 

[fibrodude84]

Would 1 month Doxy be worth a try? Would it also kill co-infections?

 

[Charles555nc]

Would 1 month Doxy be worth a try? Would it also kill co-infections?

That would work on lyme and some co infections, but not all, like babesia I believe. It'd probably be worth a try if you are having symptoms, doxy is cheap, yet it can be hard on your stomach. Then theres what dose you try....probably something around 400mg, although even higher doses are used in severe cases...and of course, discuss all this with your doctor.

 

[Jarod]

I had a tick burrowed in me, and a 2-3"Diameter bulls eye rash about 30 years ago. Did have health issues in those years, but can't remember if the tick bite caused them. Never new what to make of it.

However, after becoming disabled few years back, I tested negative for lyme. I had "one band positive", whatever that means. The neurologist who ordered the tests didn't mention the results, but a lyme doc later noticed.

The straw that broke the camels back seemed to be stress and EMF's from a heavy computer job. Still have major brain stuff going on, but don't get the brutal physical stuff(but I know what it is like).

 

[Charles555nc]

Theres 9 different forms of lyme disease, with tests only accounting for 2 forms...taking a range of antibiotics will tell you more than the tests will. Dont forget to take a lyme cyst buster like tindamax to kill the cyst form of lyme. Taking supporting antivirals can help too, like famvir/valtrex/amantadine.

 

[fibrodude84]

I think they want me on 150 mg x 2 daily.

 

[JalapenoLuv]

I think the link is that the chronic, immune suppressing infections can cause CFS. However only one type of the four lyme species is of this type (borrelia afzelii) so it isn't likely that all CFS patients have it. I think the culprits are more likely bartonella and epstein barr virus. Many of those supposed lyme patients never recover despite doing all their recommended treatments.

 

[Ecoclimber]

There is a distinct difference between Lyme patients and ME/CFS patients

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Venn diagram of the qualitative distribution of proteins identified in the pooled, immunodepleted, and fractionated cerebrospinal fluid (CSF) from normal healthy control subjects, Chronic Fatigue Syndrome (CFS), and Neurologic Post Treatment Lyme Syndrome (nPTLS). The numbers of proteins for each of these three categories separately is shown outside the circles below the category (2,630 for true normal controls, 2,783 for CFS, and 2,768 for nPTLS). The subsets of intersections between these categories are shown within the circles. There were 1) 738 proteins that were identified in CFS, but not in either healthy normal controls or nPTLS; 2) 1,582 proteins that were not identified in CFS, but were in either nPTLS disease or healthy normal controls; 3) 692 proteins that were identified in the nPTLS patients, but not in healthy normal controls or CFS; and 4) 1,597 proteins that were not identified in nPTLS, but were identified in either healthy normal controls or CFS. This figure also shows that the nPTLS and CFS groups shared significantly more proteins (n = 305) than each disease group shared with controls (n's = 135 and 166). The specific lists of these subsets are presented in additional Table S1. doi:10.1371/journal.pone.0017287.g001

Our results represent the most comprehensive analysis of the whole CSF proteome to date for both CFS and nPTLS. These two disorders have similar symptoms that have created diagnostic dilemmas. It has been speculated that one (nPTLS) is a subset of the other, but our results do not support that notion. Our findings alone do not describe why CFS or nPTLS occur, but are provided to illustrate that CSF proteome analysis may provide important and meaningful insights into the biological processes modulated as a function of disease and facilitate the identification of protein candidates for further investigation. Analytical strategies need to be developed for application to those proteins and their pathways that may not have been described yet. Nevertheless, in toto, these results are encouraging because there is an abundance of data now that can be analyzed with existing tools and future methods to develop hypotheses on pathogenesis

 

[globalpilot]

cfs being lyme certainly doesnt hold up to koch's postulates. the antibiotics could be working on the gut flora/leaky gut bacteria. this is the main thing that bothers me daily now....not knowing beyond a reasonable doubt, what i am treating. yes, LTT was positive, but many have active infections due to weakened immunity from autoimmune process. just cant stop ruminating about this all day!

evidence to show that the abx could be working on gut is, bloating/gas/cramping stops when i take the abx...one person i know almost recovered on xifaxan, a gut antibiotic, and one almost recovered on Daosin/Histame.

in chron's, autoimmune process attacks gut lining, causing bacterial infections, which lead to chron's. treating these infections often results in repaired mucosa. maybe this is similar to what is happening in us (and antibiotic trials to treat gut infections, are going on for MS too).

i had die-off from clarithromycin, which acts on h. pylori.

most chronic lyme sufferers stop abx, and the disease returns, indicating the autoimmune process is still alive and well.

is lyme causing gut issues or is autoimmune process (triggered by infection such as EBV?) causing gut issues and weakened immunity causing active borrelia?

why do they say people who give up dairy often recover from lyme quicker? could this have to do with Mycobacterium avium paratuberculosis (cause of chron's) or some other bacteria being spread by milk, causing our gut issues?

Exactly Daffodil. I 've always wonder if some of these Lyme case successes weren't really or additionally treating SIBO. I just cannot buy that one thing is causing CFS, when there are many different routes to mitochondria dysfunction.

 

[JalapenoLuv]

this is the main thing that bothers me daily now....not knowing beyond a reasonable doubt, what i am treating. yes, LTT was positive, but many have active infections due to weakened immunity from autoimmune process. just cant stop ruminating about this all day!...most chronic lyme sufferers stop abx, and the disease returns, indicating the autoimmune process is still alive and well....is lyme causing gut issues or is autoimmune process (triggered by infection such as EBV?) causing gut issues and weakened immunity causing active borrelia?

I've made the most progress with the theory that CFS is a massive intracellular parasitization following disablement of the macrophages and T cells by bartonella and EBV. EBV turns on the nagalase to destroy the Gcmaf. Bartonella has disabled the macrophages with apoptosis inhibitor and then they go L form and parasitize the tissues they can get to. Bart love nerves which explains the neuropathy. Because these pathogens are intracellular if there is any immune response left due to taking something like the herb ashwaghanda you get the autoimmune markers.

The problem is that aside from chemotherapeutic agents medicine has nothing to turn the immune system back on and kill the infected cells. So forget about practicing MDs. They have no idea what to do with this disease except wishful thinking.

 

[duncan]

I tried to read this entire thread, but it is too much. Accordingly, I apologize up front if I say something already said, or am redundant in anyway.

The question may be alternatively phrased What portion of ME/CFS patients suffer with tick-borne diseases. If you want to focus specifically on Lyme, better still would be what portion are infected with Borrelia?

To determine that, you'd have to explore all those who received negatives on their respective Lyme tests. I suspect there will be many, many false negatives, certainly if the ELISA was used to restrict access to more telling tests like the Western Blot or C6 Peptide. Even when you factor those tests into the equation, you have to account for virulent strains and species that simply are missed for their shifting antigen patterns. Then there are restrictions, contrived ones, that are politically based, such as not testing for garinii or afzellii in the United States. And THEN you have to factor in other tick-borne pathogens that can mimic Lyme symptoms, but aren't tested for because, well, clinicians for the most part aren't that savvy when it comes to them. TBD's like Babesia and Bartonella and several others.

Lots to consider. I suspect that TBD's will account for a good portion of ME/CFSer, but not all. Embedded in that observation would be pathological considerations that may boil down to semantic differences. For example: What is the difference between Myalgic Encepholamyelitis and Lyme Encephalomyelitis beyond known etiology?

 

[JalapenoLuv]

The question may be alternatively phrased What portion of ME/CFS patients suffer with tick-borne diseases. If you want to focus specifically on Lyme, better still would be what portion are infected with Borrelia?

There are four types of lyme but only one can cause CFS by blocking apoptosis, borrelia afzelii. Also add cats to the list since 60% of them carry some type of bartonella and it is transmitted by flea bites and cat saliva.

 

[duncan]

There are over 30 species of Borrelia, and over a 100 strains. The symptom clusters for many of those can pass easily for ME/CFS. Since afzelii is claimed by Mainstream science not to exist in the U.S., there would be no cases of CFS due to Lyme there. I am from the U.S. I have been diagnosed with both Lyme and ME/CFS, and there are many more in the U.S, like me.

So, JalapenoLuv, I cannot agree with your observation.

 

[JalapenoLuv]

Thanks duncan. You're right. I wasn't aware that they were limited to certain areas. Hopefully nobody will bring over any of the Ixodes ricinus ticks from Europe accidentally on a pet which would bring it to the USA. I wonder if customs is careful about screening animals. The USA is having terrible problems with flora and fauna invasions from other countries (lionfish, kudzu, etc).