Just found out I have active lyme disease. I am stunned. Help!

[Mog]

I had a Western Blot done by Igenex recently. I'm presuming the results are showing that I do have Lyme and am trying to work out what to do next. Any opinions on the results or best way to proceed? Thank you.

Lyme IgG/IgM Serology 0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa +
39kDa IND
41kDa ++
83-93kDa IND

Igenex Western Blot IGG result Negative
CDC/NYS result Negative
34kDa IND
39kDa IND
41kDa ++

 

[svetoslav80]

Igenex Western Blot IGM result Negative
Igenex Western Blot IGG result Negative

Negative means that you don't have lyme.

 

[Ema]

Lyme IgG/IgM Serology 0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa + - OSP, not specific for Bb
39kDa IND - Bacterial membrane protein specific for Bb
41kDa ++ - Flagella
83-93kDa IND - specific for Bb


Igenex Western Blot IGG result Negative
CDC/NYS result Negative
34kDa IND - OSP, specific for Bb
39kDa IND - Bacterial membrane protein specific for Bb
41kDa ++ - Flagella

If your clinical symptoms match up with a Lyme diagnosis, I would consider this a positive test in my non-medical opinion. But only a well educated LLMD can tell you for sure because testing is not perfect and Lyme is still a clinical diagnosis above all. Do you have a good doctor on board that will treat by the ILADS guidelines?

Lyme can be tricky and tries to avoid an antibody response so if a firmly positive test is something you need for insurance reasons or something else, it may be worth doing another test after a month or two of antibiotics. My first test looked a lot like yours and the second was glaringly positive after antibiotic treatment for about 3 months.

There are many good posts on Lyme disease on this thread and others that can easily be found using the search function. Most people need 6-24+ months of multiple antibiotic treatment to attack all 3 forms the Lyme bacteria can take. Some also need endocrine support for HPA axis dysregulation. It really depends on your symptoms and presentation.

 

[Ema]

Negative means that you don't have lyme.

This is not necessarily true. Lyme is a clinical diagnosis and testing is just one part of the picture.

 

[klimt]

I had a Western Blot done by Igenex recently. I'm presuming the results are showing that I do have Lyme and am trying to work out what to do next. Any opinions on the results or best way to proceed? Thank you.

Lyme IgG/IgM Serology 0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa +
39kDa IND
41kDa ++
83-93kDa IND

Igenex Western Blot IGG result Negative
CDC/NYS result Negative
34kDa IND
39kDa IND
41kDa ++

Hi Mog,

You have lyme disease. Don't mind the Igenex and CDC negatives, I'll find you the literature on why they don't apply tomorrow, I have to go to bed now.

CDC requirements for a positive test are for surveillance purposes only. Never to be used as diagnosis. Its very very very very very unusual for someone with late stage lyme to meet the illogical requirements of a CDC positive without stimulating the immune system first.

If you did not have lyme disease you would have no reactive bands at all. You have several, and most are lyme specific.

Are you in Europe? Your reaction to 30kDa indicates you might be.

39kDa is a major protein of Bb flagellin; and is specific to lyme disease

41kDa is the presence of "flagella", this is only found with spirochetal disease and is usually the first band to appear positive on your tests and it usually remains positive throughout late stage infection.

83kDa is a specific antigen for the Lyme bacterium, probably a cytoplasmic membrane.

93kDa is unknown, probably the same protein in band 83, just migrates differently in some patients[/b]

And lastly,

34kDa is an outer surface protein, specific to lyme.


So you have lyme and need to get yourself to a LLMD. Where are you living?

You will also need to start researching etc. any questions you have, you are better off asking on forums like:

http://www.mdjunction.com/forums/lyme-disease-support-forums

http://health.groups.yahoo.com/group/EuroLyme/

http://www.lymeneteurope.org/

These people are very experienced in Lyme and will not guess at answers to you questions.

Good look on this. It's a good thing that you now have a better idea what you are fighting.

I'm 26, have had lyme for 13 years (really bad the last 5 years), and was only diagnosed 6 months ago.

I've been taking a tonne of herbs and have improved massively since then. Still a long long way to go, but I have some quality of life back. PM me if you ever need to. Good health to ya

 

[Mog]

Many thanks for the helpful replies.
Ema - yes, was considering an antibiotic challenge before being retested. Or I might possibly just want to start treatment. I'm working on the LLMD aspect at the moment - either Breakspear in England or BCA in Germany. What form does endocrine support take? How are you getting on with treatment?
Klimt - yes, I'm in the UK. Are you doing it yourself with herbs or with a doctor? Is that because you can't tolerate antibiotics? Would be interested to know what herbs you are taking. Glad to hear you are doing a bit better. Thanks for the links.
I know I had a tick bite (in the Scottish Highlands) but it was actually 5 years after I came down with ME/CFS, although I could easily have had one before I first became ill as I was living and working and holidaying in rural areas in Scotland at the time. Yes, while I'm not exactly overjoyed that I have Lyme as it's a very tricky one, as Ema says, at least I might have an answer as to what is wrong with me and can start trying to tackle it at last (after 20 years of illness).

 

[klimt]

Many thanks for the helpful replies.
Ema - yes, was considering an antibiotic challenge before being retested. Or I might possibly just want to start treatment. I'm working on the LLMD aspect at the moment - either Breakspear in England or BCA in Germany. What form does endocrine support take? How are you getting on with treatment?
Klimt - yes, I'm in the UK. Are you doing it yourself with herbs or with a doctor? Is that because you can't tolerate antibiotics? Would be interested to know what herbs you are taking. Glad to hear you are doing a bit better. Thanks for the links.
I know I had a tick bite (in the Scottish Highlands) but it was actually 5 years after I came down with ME/CFS, although I could easily have had one before I first became ill as I was living and working and holidaying in rural areas in Scotland at the time. Yes, while I'm not exactly overjoyed that I have Lyme as it's a very tricky one, as Ema says, at least I might have an answer as to what is wrong with me and can start trying to tackle it at last (after 20 years of illness).

Hi Mog,

Ah yes, the 30kDa band seems to relate to European strains of borrelia so being in the UK makes sense.

Don't bother being retested (if you're thinking of retesting before finding LLMD). The test you have done clearly says that you have lyme. Only a handful of people with late stage meet the requirements, and it's not required in order to start treatment. It's only a waste of time and money at this stage.

http://mylymediseasetreatment.com/l...egative-test-results-in-lyme-disease-testing/

- a good article. But you'll need to sit down and really start internet researching this to make sense of lyme.

You were bitten and 5 years later you got sick. This is classic textbook Lyme disease. It took me 8 years to hit the wall. The exact same with syphilis etc. Usually remains dormant for several years and then hits you with late, chronic, hard to treat multi-systemic infection. It's good that you can remember the tick bite though, many people cannot.


I am doing the Buhner herbs and the Cowden protocol, also other chinese herbs that a friend gives me (not sure what's in them), colostrum, was on MAF 314 for a while and doing a lot of lymphatic drainage etc.

Buhner book-
http://www.amazon.co.uk/Healing-Lym...9630/ref=sr_1_1?ie=UTF8&qid=1344159173&sr=8-1

There's tonnes of info about Buhner and Cowden protocol on the net. Cowden is expensive, but at certain lyme disease conferences they give you the entire protocol for free!

1500 euro worth of herbs etc. really fantastic. I just got mine in Dublin at the start of June. They also give them out if your doctor writes to them and asks, saying that you cannot afford to pay for it. They are very good like that.

Buhner is much cheaper. I spent maybe 250 euro buying bulk herbs (you make the capsules yourself) about 4-5 months ago. And I'm probably about half way through the bags, great value. In saying that I did skip one or two tinctures at certain points because they are two expensive. So I am looking into making my own from bulk herbs
now.

I am not using these herbs through a doctor, I don't believe it is necessary at all. And had started using them because I found out I had lyme. I'm trying to hit this with everything possible.

I haven't taken any antibiotics at all yet. I got my test results in March and made an appointment with the BCA in Germany. They initially gave me an appointment for December as they are very busy, but if you keep hounding them they will give you a cancellation at some stage. I am now flying to Germany in 3 weeks time to be seen at the BCA clinic and start treatment 2 weeks after that.

On your question of whether to attend BCA or Breakspear. I have been researching the two clinics for over a year now (since I suspected I had Lyme) and I have heard a lot of bad things about Breakspear for lyme disease treatment. I have heard countless stories of people spending crazy amounts of money and getting nowhere at all.

The BCA on the other hand is part of InfectoLabs, which is the "Igenex of Europe". So the testing centre is right beside your treatment centre. The two doctors who set it up are hugely respected and highly competent Lyme specialists who are very regular speakers at ILADS conferences. Also, your GP in the UK might take treatment guidelines a little easier from the likes of BCA than from Breakspear, and in the end of the day this is the most important factor.

That's the end of my rant. Good luck with it all.

 

[svetoslav80]

My first test looked a lot like yours and the second was glaringly positive after antibiotic treatment for about 3 months.

What's the logic for this to happen? Antibiotics don't create more antibodies.

 

[lizw118]

Hi, LIz.

I just want to say that I think that continuing with methylation as part of your overall treatment program for Lyme disease is a good idea. Improving the function of the methylation cycle and raising the levels of the folates and glutathione with a methylation protocol should help the function of the immune system, and particularly the cell-mediated immune system, which is necessary to go after the intracellular forms of the Borrelia bacteria.

Some of the ILADS physicians have incorporated methylation treatment into their overall protocols. The feedback I have received has been positive. I've been invited to speak at the ILADS conference in November, and I plan to talk about including methylation treatment in their Lyme treatment protocols.

I think that there is good reason to believe that Lyme disease can lead into ME/CFS for people who are genetically susceptible, and in fact, this may be what causes the development of "chronic Lyme disease."

Borrelia are known to take cysteine from their hosts, and that, together with the inflammation that is produced by the immune system, can be expected to lower glutathione in Lyme disease, which has been observed.

According to the GD-MCB hypothesis, if glutathione goes low enough, it provokes a functional B12 deficiency, which in turn leads to a partial block in methylation, followed by loss of folates and development of a stable vicious circle that makes ME/CFS chronic.

The resulting suppression of cell-mediated immunity likely makes it difficult for the body to fight Borrelia, forming another vicious circle. I think that part of the solution to this is to lift the partial methylation cycle block, while going after the bacteria directly is necessary as well.

Best regards,

Rich

Hi Rich
Apologies I did not see this until now! I am absolutely keeping up my methylation protocol. I agree that this is a crucial step and I also think you idea about the underlying genetic predispositions for detox problems contributing to chronic lyme in a subset of lyme patients. I think that is probably true in my own case. My tests do show evidence of the methylation block (you checked them out a while back! thanks much!) I am taking sublingual B12, folate, B right and extra niacin, B2 and biotin. I am also getting magnesium shots from my doctor which seem to be helping my overall health. I have been on doxycycline for around 1.5 months now. The acute lyme symptoms and herx symptoms are gone, but now I simply feel tired and weak again, and perhaps more depleted from the ABX. I am taking loads of probiotics, of course. Acupuncture at least 2X week at my community acupuncture center helps too. Somehow I am not hopeful that lyme treatment will help the longterm ME stuff. It's just been so long. But hey, I'll keep trying for now. I believe the methylations treatment has helped a lot.
Liz

 

[Ema]

What's the logic for this to happen? Antibiotics don't create more antibodies.

According to my doctor, the Lyme bacteria can evade the immune system to the point where the immune system doesn't even attempt to mount much of an attack against them. The bacteria hide and build biofilms to evade detection. Then when the Bb bacteria begin to be killed by the antibiotics, the immune system may "wake up" to the infection and start to mount an immune response at that time that can then be seen more strongly through testing.

 

[Sushi]

According to my doctor, the Lyme bacteria can evade the immune system to the point where the immune system doesn't even attempt to mount much of an attack against them. The bacteria hide and build biofilms to evade detection. Then when the Bb bacteria begin to be killed by the antibiotics, the immune system may "wake up" to the infection and start to mount an immune response at that time that can then be seen more strongly through testing.

Seems to be true after GcMAF treatment too.

Sushi

 

[Ema]

Many thanks for the helpful replies.
Ema - yes, was considering an antibiotic challenge before being retested. Or I might possibly just want to start treatment. I'm working on the LLMD aspect at the moment - either Breakspear in England or BCA in Germany.

If you are in Europe, there may be less of a reason to re-test. It's more for people in the USA who might have trouble getting antibiotics covered under insurance without a positive test.

What form does endocrine support take? How are you getting on with treatment?

I have adrenal insufficiency and HPA axis dysregulation that may well have been caused by Lyme. I take a replacement dose of hydrocortisone plus a miniscule dose of dexamethasone. The immune system requires cortisol to function so this is a double whammy to be low. Infections also increase the need for cortisol and it is a balance to keep enough steroid to function and heal without taking a pharmacological dose which would be immunosuppressive. It turns out Vitamin D may also be a similar balancing act.

I am also hypothyroid and replace thyroid hormone as well as supplement sex hormones.

I was getting on pretty well until just recently when we re-stained the hardwood floors in the house! Hopefully this is just a minor blip though as the antibiotic treatment was really helping though it did take a few months to kick in. I also take antivirals for EBV, CMV, etc. I'm not sure which infection came first so I'm just trying to kill them all!

 

[Mog]

Klimt, many thanks for all the info, especially about the herbal stuff - I will look into all that. It's great that it has been helping you improve.

You were bitten and 5 years later you got sick. This is classic textbook Lyme disease. It took me 8 years to hit the wall. The exact same with syphilis etc. Usually remains dormant for several years and then hits you with late, chronic, hard to treat multi-systemic infection. It's good that you can remember the tick bite though, many people cannot.

Actually it was the other way round, unfortunately. I'd been ill for 5 years with CFS before getting the tick bite. Which isn't to say that I didn't have one before first becoming ill, just not one that I was aware of.

I haven't taken any antibiotics at all yet. I got my test results in March and made an appointment with the BCA in Germany. They initially gave me an appointment for December as they are very busy, but if you keep hounding them they will give you a cancellation at some stage. I am now flying to Germany in 3 weeks time to be seen at the BCA clinic and start treatment 2 weeks after that.

On your question of whether to attend BCA or Breakspear. I have been researching the two clinics for over a year now (since I suspected I had Lyme) and I have heard a lot of bad things about Breakspear for lyme disease treatment. I have heard countless stories of people spending crazy amounts of money and getting nowhere at all.

Good Luck with your treatment at BCA. I'd be very interested to hear how you get on there and how your treatment goes. Please do let me know, either by PM or by posting here. So, is that about a 9 months wait for an appointment?

Yes, I'm not sure about Breakspear, mainly because I got the Western Blot done with them plus other tests, but they've just ignored the WB result and put me on a mitochondrial and gut regime, both aspects obviously need fixing but if Lyme is underlying it all, then that surely needs to be tackled first. And surely no point trying to repair my gut if I'm going to be taking masses of antibiotics. I did ask them about the WB result and Lyme, and they said to do another test, probably an Elisa, but they didn't imply any urgency. So that's what has started me investigating myself.

 

[Mog]

Ema, thank you very much.

I have adrenal insufficiency and HPA axis dysregulation that may well have been caused by Lyme. I take a replacement dose of hydrocortisone plus a miniscule dose of dexamethasone. The immune system requires cortisol to function so this is a double whammy to be low. Infections also increase the need for cortisol and it is a balance to keep enough steroid to function and heal without taking a pharmacological dose which would be immunosuppressive. It turns out Vitamin D may also be a similar balancing act.

I do have low adrenal function but did try hydrocortisone a few years ago. I was on it for 3 weeks and didn't feel any better or any different, but when I stopped it (possibly too quickly or suddenly), I became very depressed for at least a month, which was obviously connected to it somehow.

I am also hypothyroid and replace thyroid hormone as well as supplement sex hormones.

I am also hypothyroid and take levothyroxine and liothyronine. I have tried natural thyroid for 4 - 5 months but it didn't seem to make any difference. I haven't ever tried sex hormones.

I was getting on pretty well until just recently when we re-stained the hardwood floors in the house! Hopefully this is just a minor blip though as the antibiotic treatment was really helping though it did take a few months to kick in. I also take antivirals for EBV, CMV, etc. I'm not sure which infection came first so I'm just trying to kill them all!

I had other tests done at the same time as the Western Blot, and one of them showed ongoing EBV infection. Is it connected to the Lyme somehow? I'd hoped it might clear itself if the Lyme was treated, so it's interesting that you are treating it too. What antivirals do you take for it?

Hope your blip passes soon and you get back to making good progress with the antibiotics.

 

[Mog]

It's good that you can remember the tick bite though, many people cannot.

I feel the need to share my tick bite story, as I think it's very horrible I must have got it when out in the afternoon in undergrowth/heather, crawled up my trouser leg I suppose. I didn't find it until I went to bed and undressed. I'm afraid I was ignorant in those days and I think I knew it was a tick but didn't know much more. I just pulled it off me and, being a humane sort of person, I didn't kill it and just put it in a metal open top bin in my room. Big mistake... I went to bed, woke up in the morning and discovered the tick back on my leg. It must have been the same tick because it was no longer in the bin. It had climbed out the bin, across the room on a fluffy carpet and climbed into bed with me... I'm not squeamish but I do find that rather horrific

 

[Sushi]

I feel the need to share my tick bite story, as I think it's very horrible I must have got it when out in the afternoon in undergrowth/heather, crawled up my trouser leg I suppose. I didn't find it until I went to bed and undressed. I'm afraid I was ignorant in those days and I think I knew it was a tick but didn't know much more. I just pulled it off me and, being a humane sort of person, I didn't kill it and just put it in a metal open top bin in my room. Big mistake... I went to bed, woke up in the morning and discovered the tick back on my leg. It must have been the same tick because it was no longer in the bin. It had climbed out the bin, across the room on a fluffy carpet and climbed into bed with me... I'm not squeamish but I do find that rather horrific

Eeek! Hope you squashed it the second time around--you know that ticks reincarnate I guess?

Sushi

 

[Mog]

Yes, it certainly did get squished the second time around! And I do now know not to show any mercy to the horrible little blighters. But it does illustrate the tenacity of ticks - and the strength of their blood lust...

 

[brenda]

Hi Mog and all

I am in the UK with late Lyme and saw a Dr at Breakspear a few months ago who wants me to take the WB. I had a positive blood test (not WB) in Germany a few years ago and tried alternative treatments with no success.

I wish I could contact some of their failures - I was told by them they had a lot of success. I agree that building up the system is important before going on the kill.

Anyway I have to wait to see if my PCT will pay for the tests

Brenda

 

[Mog]

Hi Brenda,
What alternative treatments did you try?

 

[erist]

I recently tested positive (even by CDC standards) on the Igenex test. I have an LLMD. Why I didn't at least check this over the past 10-15 years of being sick I do not know. I am scared to start antibiotics (because for so long I have though that part of my problem is yeast) but it is a route I haven't explored yet,so going to explore it.

CD57: 25

Western Blot IgG
Ind/negative

Western Blot IgM
+ bands (18, 31 (++), 39, 41)
IND bands (83, 93)

KdA epitope test for Borellia on band 31: positive