Fellow Chronic Lyme disease CoThers-I need help

[Obi]

I have been sick since 2008, but first known exposure was in 2003 (bulls eye’s rash, etc). I have been housebound since 2010 and I am at my wits end when it comes to medical support.

I live in the South, where they do not believe in Lyme disease so even if I end up in the ER for a non-lyme reason, I get shelved and basically dismissed. I have to fly to DC to see my doctor but was too sick to even make my last flight.

I have been on oral antibiotics since March 2008 and my stomach is now trashed. I have a horrible candida infection and now leaky gut. I have tried various Lyme sites but most of these people think a headache equals lyme.

I am so tired if being sick. I am so tired of what few friends I have left telling me to ‘snap out of it’. I am broke, tired, and yes, depressed. I am hoping that IV antibiotics might help (hell, that is what they do with horses when they get diagnosed with Lyme). I guess my question is of those of you who have had Lyme and try the IV antibiotics, did it help? What worked? Have any of you gotten better?

[LauraKY]

IM Bicillin. If you’re seeing who I think you’re seeing in DC (used to be in NC), he’s very aggressive with treatment, which is not always for the best. There are other good doctors out there. IM Bicillin did the trick for my daughter. She was a basket case while being treated by Dr. NC/DC. PM me if you’d like more info.

[Claudius]

For my initial diagnosed attack of Lyme, and for the reoccurance a year later,the oral Doxy WITH Ampicillin did the trick, but it took 4 weeks each time. The third reoccurance a year later I had allergic reactions to both Doxy and Ampicillin. I had some Ciproflaxin left over from an unrelated infection, so I called my Doctor and said I was going to take it. She said it was not effective for Lyme. I took it anyway, for several days, it worked and I have not had a reoccurance since that time a couple of years ago.

[grayarabs]

Obi - its bad for me, too. I don’t know what to do.
I took oral Abx for “challenge” tests - for Igenex. Several times.
A couple of months on and off. I think that might have been a bad idea.
Might have made things worse.

I was considered Lyme neg. This has gone on for years and I am at the end of my rope. Not knowing what was wrong for so long- being so sick - and no treatment - except the Abx taken to see if the little
monsters would finally reveal themselves in a test that would satisfy the the Igenex/CDC standard for positive.

I finally got a positive with the new culture test this past Feb.

When I did take oral Abx it did not seem to help.

I am on IVIG because my immune system is shot. No wonder I “failed” antibody tests - I am Immuboglobulin deficient.

I have tried herbs. Trying to detox. Tried homeopathy. Naturopaths. Nothing helps and I am getting worse. Its like the more I try the worse I feel.
Continous herxing or toxic - I don’t know. I am fighting Lyme and Bart and who knows what else. Oh and I have the HLA type 15-6-51 - ie more difficult to treat/detox/recover.

A few months ago I had to go to the ER as I was having trouble breathing.
Very high white cell count. They said I had bronchitis. This was just before I got my Lyme confirmed diagnosis. Wouldn’t you know I was given two Rochephin infusions. It did the trick as far as my bronchitis was concerned.
And for a couple of days after that I felt much better overall. I tried to figure out how I could get Rocephin infusions. Not that easy - ie picc lines or ports etc. Plus my research indicated that it is possible that the “relief” from Rocephin is that it drives the spirochetes into cyst form and is also anti-inflammatory - so folks feel better. Also the gallbladder issue. And folks (docs as well) saying once off Rocephin one is back to square one - perhaps worse. And Abx are immune suppressants? Great.

But the past weeks have been horrible for me so I am re-thinking Abx.
If not Rocephin then perhaps Bicillin. I don’t understand the difference between the orals and the IM’s. Plus I only weigh 100 pounds - I don’t know if I have enough flesh/muscle to handle the injections.

Anyway, Bicillin has been on my mind the past days so this thread is timely.

How does a very sick person handle the diseases ie Bb, Bart and Babs, parasites, treating each, fighting yeast etc - especially being immune compromised. It seems impossible to me.

[SMF11]

A friend was on IV rocephin for something like six months and is pretty much cured of her Lyme. My son was put on it, but it turned out he didn’t have Lyme. On the one hand, IV antibiotics can be lifesavers, but they do have potentially life threatening side effects/complications. My son became allergic to the rocephin and it took several doses before we figured it out . . . it was very scary and very very dangerous. His picc line got infected too. So if you need them you should have them, but don’t do it lightly.

I also have a friend who was cured with bicillin shots too.

The problem with Lyme is that there isn’t a one-size-fits-all treatment.

If you haven’t already looked at the Columbia University Medical School’s Lyme Disease Center’s website you should, it is a great resource.

[EqTrainer]

It was not until I got a hot tub that I was able to kick my chronic Lyme. Cooking myself at 105 repeatedly did it.

If you are in NC, my osteopath will treat you. PM me if you want his name.

[DressageAthlete]

There is exciting new research about some of the reasons antibiotics are not effective at eradicating chronic Lyme disease. My blogs have so much information that would give you hope - particularly the work being done by Dr. Eva Sapi in New Haven who has endorsed a new protocol that is very inexpensive (I am trying it right now after 7 years of being disabled). Read my page on Biofilms at http://neuro-lyme.com/videoblog/ or some of the articles at http:lymediseaseresource.com/wordpress.

I know just how you feel…but you have every reason to hope! And leedum is a GREAT homeopathic remedy for horses. I spent over a grand on abx for my swedish warmblood gelding who got Lyme and Erlichiosis, and $7 including shipping for my Holsteiner for the leedum because the test was not as conclusive but she went from elastic and energetic to lame overnight! I had to put down the gelding because the Erlichiosis went to his brain and be became dangerous and unrideable and was in horrible pain - while my mare completely recovered and less than a year later is doing flying changes, medium trot, rein-back - no signs of lameness…

Someday I will be on her back not a trainer!

Best wishes to you!

[Couture_TB]

[QUOTE=Obi;6405121]
I have been sick since 2008, but first known exposure was in 2003 (bulls eye’s rash, etc). I have been housebound since 2010 and I am at my wits end when it comes to medical support.

I live in the South, where they do not believe in Lyme disease so even if I end up in the ER for a non-lyme reason, I get shelved and basically dismissed. I have to fly to DC to see my doctor but was too sick to even make my last flight.

I have been on oral antibiotics since March 2008 and my stomach is now trashed. I have a horrible candida infection and now leaky gut. I have tried various Lyme sites but most of these people think a headache equals lyme.

I am so tired if being sick. I am so tired of what few friends I have left telling me to ‘snap out of it’. I am broke, tired, and yes, depressed. I am hoping that IV antibiotics might help (hell, that is what they do with horses when they get diagnosed with Lyme). I guess my question is of those of you who have had Lyme and try the IV antibiotics, did it help? What worked? Have any of you gotten better?[/QUOTE]

All I can say is thank god for IV DRUGS! Know I wouldn’t be riding and teaching again without them. I did it for 8 months. IV Rocephin and then IV Clyn. Was a pain trying to keep my dressing clean though.

The down side is that a lot of insurances don’t cover IV meds for lyme. Luckly my DH found a place that would sell us the meds at what the insurance pays, so instead of $5,000 a week for my meds it was $1,200 a month. We were lucky to have sold a couple horses and my hauling truck I didn’t use anymore so all the med money came out of that.