Lyme Disease summary: 30% of PWC have Lyme?

[Seeker]

take care.. lyme tests can also be false postives due to contamination (i guess that is why they say one has to have a certain amount of bands before it is seen as positive.

i do thou think quite a few with CFS/ME do in fact have lyme as it can be hard to test for. Ive also known some who found out they had lyme and not CFS, improve greatly with treatment.

The statistic thou is that 10% of lyme cases end up with CFS/ME (lyme can be a trigger for it just like mono can be). In these cases, lyme treatments dont fix things.

Apparently only 50% (i think it was) get the rash!

Um, with all due respect, if a person doesn't produce Lyme-specific antibodies, just looking at bands (on a western blot) would result in a false negative.

And the last line of the Joshua222 quote is inaccurate; if caught early (soon after bite), abx treatment has a high cure rate; that is not true once it has disseminated.

 

[redo]

The treatment was oral Azithromycin and Mepron. Neither of these is given specifically for Lyme.

A study showed that regardless of why (they don't know), 59% of CFS patients improved with azithromycin treatment.
http://www.translational-medicine.com/content/4/1/34

I doubt it'll be a cure, but an improvement doesn't sound so bad :Retro smile: It might be many reasons for the improvement. The authors behind the 59% study said they thought the results might be different if blinded and placebo controlled, but none the less, I think 59% in an unblinded study is good!

 

[Sing]

We've had long threads in the past dealing with the ins and outs of Lyme and ME/CFS.

I have ME/CFS. On going to a Lyme Literate doctor, he made the clinical judgment that I have Lyme and treated me with anitibiotics which only made me worse for 3-4 months. I quit the antibiotics and slowly returned to my previous condition.

Here is the key for you readers: This doctor who specializes in Lyme and who has been diagnosing and treating it for years in the US said that the tests for Lyme are very unreliable and that it is possible to have a negative and be positive, or vice versa. The only way Chronic Lyme is really diagnosed is by clinical symptoms AND by whether or not the patient has a positive response to antibiotics. The complication is the HERX reactions. He said these could last any amount of time. There is no agreement upon when the patient is supposed to start improving. So long term bad reactions to treatment could be HERXing or a negative reaction to the antibiotics, antifungals, etc. of treatment.

For many people, especially those suspecting a bad reaction to a tick bite, it could be well worth a try, but you need to work with a Lyme Literate Doctor. There are also Alternative herbal treatment courses, but I never went into those. Personally, I resist highly complex, expensive, unproven courses of treatment on a long term basis. But for many--"Leave no stone unturned" may be the wiser approach.

 

[August59]

I came down with a mild illness while in North Carolina/Virginia for a few weeks that required me to rest in bed for an hour or so every day. I just felt under the weather - I don't recall any other symptoms at all. Then I returned to the UK. A few months later I got what seemed to be the flu, complete with fever, sore throat, raised glands etc. and classic ME.

I was tested (in the UK) for Lyme via a blood test but it came up negative.

I'm wondering if I should consider Lyme ruled out or not. I certainly got bitten by a load of stuff while in the US - chiggers, fleas, etc.

Don't be fooled the Carolinas have there share of lymes disease. It's just never reported. I have one friend who got very ill and thought it was just a stomach type virus and didn't do anything. His wife the following night noticed a rash on his back and head 3 deer ticks within 6" area and she took to the emergency room and they said why didn't you just remove the ticks. Charged them $485 and told them to go back to family doctor. He gave doxycycline for 10 days and that was all. My friend did show a little improvement and plateaued but they would not give him anything else. They did do an Elisa w/Western Blot on a positive return. It came up negative.

We were lucky enough at to have a LLMD located about 40 miles from us. (He was eventually ran out of NC, moved to SC and then to Washington, DC which had to do with his daughters health). He knew right away he had it and had extensive blood test and a week long urine test (I think was a week). Wherever he sent it they called from lab instead of waiting on fax and follow-up appt. They took him in the next day and put an "shunt"(?) in forarm and he kept for several weeks and I think they have to change location every seven days. He went through 3 different antibiotics as they initially felt he had an major ifection in the walls of the heart from it. Kept him on orals for a few more weeks while still rotating. He was feeling pretty good at this point and they said not for long as they put him in a sauna at some point and a round of prednisone at some point. He has been doing really well for over 5 years now.

Another friend (land surveyor) was bitten by a tick and had the famous rash with a tick right in the middle and they just immediately gave him anti-biotics and he did good. Three years or so later started feeling the same way and found a tick, but never had a rash. Again, they gave him anti-biotics and was fine. Has never had anymore problems

 

[Bob]

This is from Dr Freidman's recent talk about the Ottowa conference:

One of the interesting papers that was presented at this meeting was by a clinician, I believe he's at GW, near Washington DC, was sort of a courageous thing, what he did was he took his Chronic Fatigue Syndrome patients, and he treated them for Lyme disease, and approximately a third of them improved, their physical condition improved when treated for Lyme disease.

Its not sure exactly what that means. We're not sure whether that means that approximately one third of the patients in his patient population had Lyme disease, and were just missed with the Lyme disease diagnosis, but when they were treated for Lyme disease actually improved, or whether the actual, or their particular kind of Chronic Fatigue Syndrome is susceptible to the same sort of treatment with anti-biotics that are used in the treatment of Lyme disease, so that there is at least potential overlap between Chronic Fatigue Syndrome and other illnesses, and this is something that needs to be looked at much more carefully.

http://forums.phoenixrising.me/show...n-on-the-Ottawa-Conference&highlight=Friedman

 

[SilverbladeTE]

Interestingly, iirc, the test the NHS in the UK uses for Lyme is only 30% effective, or was from what I recall of that time period?
So...I like many others could be suffering from Lyme, or ME triggered by Lyme

so this finding is not really suprising from that perspective?

 

[redo]

Personally, I resist highly complex, expensive, unproven courses of treatment on a long term basis. But for many--"Leave no stone unturned" may be the wiser approach.

I agree. Different people, different situations. Everyone is different from the next, and in the end it's up to each one to decide what's best for oneself. I am very much the "leave no stone unturned" person, and I totally respect other ways to handle this. Only thing I've got a problem with is those (not you) who say something like: You shouldn't be allowed to try to stop the 'CFS torture' because there is a chance it could go wrong, you should therefore never be allowed to take long shots, and only let doctor-I-don't-care make all the final decisions.