Lyme Disease Support Group

I have been suffering with Lyme since 1999, but I am on the right track now.

I went to 14 doctors, including John's Hopkins before I was finally diagnosed correctly. The muscle relaxants and steriods they gave me, early on, I believe nearly killed me, they subdued my immune system and allowed the pasasites to get a hard and fast hold.

I now have a designated Lyme Literate doctor. I found him through the Washington Captial Lyme Center in DC

I am now on 1500 mgs. of Tetracycline a day, and have been for a year. I no longer get those sudden paids, my feel no longer swell so I can put weight on them, etc. Sleep is still a little difficult, but other than that I am doing much better. I was on Doxycycline, but only had a little relief with that medicine.

The biggest help....I bought an oxygen concentrator. Apparently the parasites do not like oxygen. Since I have been on oxygen, I have improved tremendously.

Hi and welcome

glad you are on the right track now. I know sadly it's the same story for many of us, very hard to get a diagnosis, you pretty much have to figure it out yourself, then find a lyme doc.

yes, steroids are a BIG NO NO for lyme patients, I made the same mistake, I had 12 shots in my back, I begged for them , before I knew what was really wrong I was in so much pain. not only suppressed my immune system, but activated dormant viruses as well, VERY painful.

I would be interested in knowing more about the oxygen concentrator, is this something you need a prescription for?

O2 also kills lyme, not sure if you knew that. heat and o2 are big killers of lyme. so it's really a great thing to have. i just can't get a prescription for O2, so trying to figure that one out.

warmest regards

jaime

ps, check around in the general posting area of the lyme groups, and also our fact section, some great info in there

I too would like to know more about the Oxygen concentrator. I am here for my husband who suffers with Lymes and trying to get some answers and alternatives to him taking more antibiotics (which make him more sick)which have the potential to hurt his system more. We live in the Philadelphia region and would like to know where your doctor is and if possible to get his contact info?

Hi!

Even with oxygen I feel sick, but the oxygen makes the feeling of flu symptoms lessen after about 5-10 minutes on oxygen at 5 liters.

I called the Washington National Capitol Lyme Center....they will give you the name of a lyme literate doctor near you. That is where I heard of my doctor in Belle Haven Virginia.

I also find that many people are on Doxycycline...that is what I started out with. I have been doing much better on Tetracycline.

It seems to help to do a colon flush a couple of times a week to remove the toxins from the meds. I take a liquid probotic as far from the med time as possible to give my immune system a chance.

Since I suffer from the problem with sleeplessness, I take either a natural sleep aid, there are several, I use melatonin.

It all works together, but I truly believe the oxygen has helped me the most (except of course for the antibotic). I bought it on line at devilbiss. I just saw one on their site for $749. Well worth it!!!!

please send me a pm to help me find a doctor. I live in virginia Beach, Va.

Thanks, pray4u

There is a doctor in Jupiter Florida who treats Lyme Patients with Hyperbaric chamber...I think that is an oxygen chamber or something. I have thought about making an appt and now even more so after hearing how well oxygen helps. Thanks for the info.

Best Regards,

Sabado

Is there a doctor in Jupiter Florida who treats Lyme Patients with Hyperbaric chamber?

Any info would greatly appreciated, I am currently being treated but it's a slow and painful process.

Thanks