Almost clever checking in ;)

[AlmostClever]

Howdy y'all!

Been away for awhile since I was dx'ed with Chronic Lyme instead of MS. I've been on IV antibiotics now for 12 weeks. (Rocephin, Zithromax) no improvement but my labs definitely indicate Lyme. Every 4-7 days I have a good day where I have more energy but most days are hard. My treating docmsays that is typical. I have had Lyme I suspect for over 15 years but since I live in Houston the docs don't think to test for it. My doctors see 1,000 Lyme patients monthly! In fact one of the partners there was dx'ed with ALS, it turned out to be Chronic Lyme, he did heavy doses of abx, and now he is completely recovered!

Good luck to all of you and never give up! I'll be back!

A/C

[LR1234]

I hope you see some improvement soon:)

How does one truly know if they have lyme or not? I once tested positive for lyme but have since been twice negative.
Do you have to have had a memorable incident of being bitten by a tick?
I used to spend a lot of my childhood in America but mainly Florida.....Is Lyme disease something you can pick up from Florida?

[AlmostClever]

Yes, Lyme is everywhere in the U.S. it is considered more endemic in the northwest.

Yes, I had the characteristic bullseye rash from a tick bite long ago but I knew nothing about Lyme and did not go to the doctor.

The blood tests for Lyme are notorious for false negatives. If you had a band go positive and then disappear, it may be that the bacteria that cause Lyme has changed its form. It does that!

There is another blood test besides the Elisa and Western Blot called the CD-57 that docs will monitor during treatment. A low CD-57 indicates Lyme. Mine started at 16 and has gone up as I have taken abx - a very positive sign of Lyme.

I would suggest finding a LLMD (Lyme literate md) and getting tested again, even if to just rule it out.

Cheers,

A/C

[LR1234]

Thanks A/C will do

[Joanne60]

I hope you see some improvement soon:)

How does one truly know if they have lyme or not? I once tested positive for lyme but have since been twice negative.
Do you have to have had a memorable incident of being bitten by a tick?
I used to spend a lot of my childhood in America but mainly Florida.....Is Lyme disease something you can pick up from Florida?

Hi LR There are a growing number of people in the UK being diagnosed with Chronic Lyme Disease contracted both in UK and in US as well as other parts of the World. There is a huge medical controversy over chronic lyme Disease but many patients suffer with MS type symptoms which make it difficult to know if it could be Chronic lyme Disease. Sadly many are not always aware of the poppy seed sized tick that bit them and many do not get or see the Bulls eye rash. It can sometimes be years before symptoms become troublesome. Blood tests can miss up to 50% of cases.

Currently most mainstream doctors follow the IDSA restricted guidelines however there is much science that supports the view of ILADS. Many hundreds of patients here in the UK are improving on long term antibiotics, including myself.

I am not sure about adding url's so I would recommend that you Google Lyme Disease Action, join chat line Eurolyme and you will find much information worth reading. There are one or two private doctors in the UK who would assess you to see if your MS could in fact be due to Lyme Disease and with appropriate treatment make some significant improvements.

Good luck in finding something that helps you.

[LR1234]

Thanks Joanne...will check it out.

[jenf]

Hi Almost Clever,
I'm in the same Lyme boat with you as are a few family members. My sister was treated with the IV PICC line for 6 weeks and showed slight improvement, but then went back downhill when it was removed. We switched docs and the new one has prescribed Bicillin injections instead. It seems to be doing the trick. I think just like everything else, while it may work for some, it doesn't always work for others! Plus, if you're seeing a LLMD, I'm sure they're aware and testing for co-infections? That was also part of my sister's problem... they hadn't fully dealt with the co-infections before trying to treat the Lyme. Just my two cents!!
Jen

[mrbarlow]

Hi

Thanks for posting and please keep us informed with your progress.

I had a Lymes test earlier this year whilst in Saudi Arabia (Mayo Elisa) which was negative however if I have Lymes it is from the UK and I have had direct contact with deer and lived in an area with endemic populations of Muntjacs. I think the test was flawed in that I'm also on Rebif.

I'm coming off Rebif on March so this may be a good opportunity to get tested again and go for the Western Blot test.

Does anyone know of a good Doc in the Uk for Lymes?

[Cece]

You have to check in at the CCSVI forum too if you want everyone to know.
Congrats on having a diagnosis, and a treatable one at that. I wonder how this fits with your CCSVI diagnosis? You definitely had CCSVI, right?