borrelia

[dianne-sunshinecoast]

hi , since my lab test results in august from australian biologics, which said …whole blood positive for borrelia burg. i have rung the drs. surgery several times to see if the dr. had also received the results, and was told by the receptionist that dr. reviews the results and requests you make an appt to see him if he thinks it is necessary. as yet i have had no phone call? i have emailed the drs surgey in america whom he works in conjunction with they were very nice and told me the cost of treatment , which i am afraid is way out of my financial realm. and i dont have assets to sell off to pay for them. i also emailed a dr. in nsw and same story the cost is too much for me.my latest blood tests show my eosinophil count has increased to 2.77 ( o.04- 0.40). esr 34(1-30), crp 11 (0-6), serum liver function tests LD-265/ul (80-250). i am seeing my old rheumatologost on friday , i will show her the results from AUSTRALIAN BIOLOGICS and see what she says , the reason for the visit as far as she is concernd is to take me off methotrexate because of the eosinophil count , and put me on a biologic. i dont know if thats such a good idea if i have borrelia burg. never mind dont have much choice , i will keep you posted. ..kind regards ..di.

[Maz]

@dianne-sunshinecoast wrote:

i have rung the drs. surgery several times to see if the dr. had also received the results, and was told by the receptionist that dr. reviews the results and requests you make an appt to see him if he thinks it is necessary. as yet i have had no phone call? i have emailed the drs surgey in america whom he works in conjunction with they were very nice and told me the cost of treatment , which i am afraid is way out of my financial realm. and i dont have assets to sell off to pay for them. i also emailed a dr. in nsw and same story the cost is too much for me.my latest blood tests show my eosinophil count has increased to 2.77 ( o.04- 0.40). esr 34(1-30), crp 11 (0-6), serum liver function tests LD-265/ul (80-250). i am seeing my old rheumatologost on friday , i will show her the results from AUSTRALIAN BIOLOGICS and see what she says , the reason for the visit as far as she is concernd is to take me off methotrexate because of the eosinophil count , and put me on a biologic. i dont know if thats such a good idea if i have borrelia burg. never mind dont have much choice , i will keep you posted. ..kind regards ..di.

Di, so sorry to hear you’re having such a battle. Would it be possible to make an appt with the doc who ordered the test to go over it with him in person and to express your concerns? It seems pointless speaking with receptionists sometimes when they just spout verbatim pronouncements and don’t have any knowledge of your case or concerns. Or, is it this doctor who would be too costly for you, anyway?

Your CRP and ESR are elevated, but not horribly. Are you able to be doing anything to reduce inflammation on your own in the way of detoxing?

The increasingly elevated esoinophil count should probably be further investigated…do you have any allergists/immunologists in your neck of the woods? I think you saw a hematologist about this, if my memory recall is right, but a doc like this might be able to delve a bit further into things that might be causing this elevation. E.g. If you have a parasite causing this problem, then an immune-suppressant might be making things worse…or it might just be the mtx, itself, to which you’re sensitive. Have you ever been tested for helicobacter pylori? This is a known trigger of RA, similar to Lyme.

Here is a link to info on this issue quoted from the Center for Eosinophilic Disorder at Cincinnati’s Children’s Hospital:

http://wiki.answers.com/Q/What_does_high_eosinophils_in_blood_mean

Not sure what liver function tests you mean, but might be worth also checking further into this. They’re not highly out of range either and methotrexate can cause this problem in some folk. When I first got diagnosed with Lyme, prior to starting abx, my baseline liver function tests were awful…alkaline phosphatase was off the charts. Within a month of being on Lyme abx, these normalized. Not saying this would be the same for you, at all, as I just don’t know, but interesting that conventional medicine would probably balk at using an abx when liver function tests were so awful, but in my case, they normalized my highly elevated liver enzymes…Lyme loves the liver and gall bladder.

I’m so sorry that finances are making treatment so cost-prohibitive for you, Di. It sounds like you may have exhausted some of your options…maybe Lynnie would have further insight for you? Have you also contacted the Aussie Lyme group? Here are a couple other sites…maybe someone in these groups can offer further resources to you?

http://www.karlmcmanusfoundation.org.au/lyme-disease-information/index.php?id=4

http://lymegreenaustralia.blogspot.com/

There are also support groups in Australia for esoinophilic disorders and just wonder if someone in one of these groups might have some insight for you? Sometimes patients who deal with these issues have great insight to pass along from patient experience.

[dianne-sunshinecoast]

hi maz, thank you for your reply. unfortunately yes this is the doctor who would be too expensive. he did say when i first saw him , i hope you have plenty of money. and i have contacted the president of the lyme disease association in australia. a really lovely person who offered many suggestions but unfortunately didnt help my situation. and she did not recommend the other doctor in another state who treats lyme even if i could afford him. i did see a haematologist earlier this year and she said it was the methotrexate which was the cause of the eosinophelia, and recommended to the rheumatologist i am seeing on friday to change my meds. i have also been tested for h.pylor. and dont have it, thank goodness. i am surprised my blood tests are not a lot worse given that methotrexate is suppressing my immune system? everything connected to the tests for the liver are ok , just the LD which is slightly elevated , im not sure what that one is ? the doctor who tested didnt even mention it , i just noticed it when i picked up the copies of all my tests , he didnt request to see me just left a message for me to see about the eosin. with the rheum.? thanks again maz , all the best to you and yours..kind regards..di.

[dianne-sunshinecoast]

hi all, i saw the rheumatologist today , and gave her the results from AUSTRALIAN BIOLOGICS, regarding BORRELIA BURG., she never commented a lot, just said i will give you 100mg doxy for 1month and then have a blood test , then see her in 6 weeks. and to keep taking the methotrexate . i only had 15 mts for a visit so didnt get much time to talk about anything really. i am grateful she did not disagree with the test though , that was good. so just see what happens next i guess? i will be taking 100mg a day of the doxy. the best to all..kind regards ..di.

[lynnie_sydney]

hi all, i saw the rheumatologist today , and gave her the results from AUSTRALIAN BIOLOGICS, regarding BORRELIA BURG., she never commented a lot, just said i will give you 100mg doxy for 1month and then have a blood test , then see her in 6 weeks. and to keep taking the methotrexate . i only had 15 mts for a visit so didnt get much time to talk about anything really. i am grateful she did not disagree with the test though , that was good. so just see what happens next i guess? i will be taking 100mg a day of the doxy. the best to all..kind regards ..di.

Di that doesnt surprise me. And, whilst a short-term rx for doxy may be helpful in the short term, she – and most other rheumies – are not really the people to help you with treatment because they have been taught nothing about it. I’d be looking for other assistance if it were me. aussie lyme group may be the people to help with some suggestions, if travelling far is not an option for you. However, there is such limited knowledge about borrelia burg tratement here in Oz, you may just need to look further afield. You might consider emailing Dr N. McF (contact details available form the http://www.restormedicine.com site) because I know she has an “on board” GP up your way with whom she works.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[dianne-sunshinecoast]

lynnie- thank you for your reply, much appreciated. i have been down the road of trying to contact the doc near me who works in conjunction with dr. mcf. in america. was told he would contact me if he thought the results required a visit. also contacted dr. mcf. and cant afford the money it would cost for her treatment. this is my only choice at present? i dont have the funds for expensive treatment . all the best …kind regards ..di.

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