posted 04 December 2004 12:13               

He has experienced some minor peaks in the last year among many deep valleys. He has just not reached any sort of turning point that I can tell. I am so frustrated by this.

He has been on doxy with zithromax, ceftin, heparin, flagyl (which he can hardly tolerate) and is starting hormone therapy. He is sleeping for 14 hours a day on average and when he is awake he is mostly lying down. We have tried rife and can't see any response.

The flagyl has been a nightmare. He can hardly tolerate any of it, so in at least 2 months he hasn't gotten much farther than than 1/4 tablet everyday. He just can't take any more. So he has taken a break from the flagyl and rifing, and it feels like we are doing nothing. I'm not really convinced of the effectiveness of rife.

He hasn't lost hope, but my faith is weakening. We would be so happy if he would just get 50% better. Heck, I'd take 25%. Any percent.

I'm starting to feel like he will never get better. We have so many supplements that we've tried, but it's so hard for me to keep him on any kind of schedule. I've got two young children and all the business of the house to take care of. It's looking like I may have to go back to work too since he was the wage earner. We recieved several months of disability and are working with a lawyer to recover the rest, but he only had one year of it.

Ugh. I just hate this disease.

posted 04 December 2004 13:06            

I can understand your frustration. This is a hard illness, both for patients and those who love them.

From your desciption of treatment, it doesn't sound like your husband has been treated for any coinfections. Treatment resistance is often caused by untreated coinfections that require different drugs than the Lyme.

The recent ILADS conference was all abuzz about Babesia, and how common seronegative infections were. Many are now treating seronegative Babesia. You can check out threads on Lymenet on Babesia and Mepron.

Has your husband been checked for Babesia, Ehrlichia, Bartonella, or mycoplasma? These are some of the most common, but not the only ones.

Some also find it necessary to address heavy metals, or yeast infections. Is your husband on a no sugar, low carb diet, and taking lots of probiotics?

Hormones can also be an important issue, and if he is just starting, it will take time to see the benefits.

Don't give up hope. It takes time to find the right treatments, and combination of treatments for someone who is very sick. But 50% improvemnet is a very reasonable and attainable goal. Even better is possible, just give it time, and trial and error.

It can take as long as several years to have the kind of improvement you really want, so don't give up yet!

Are you keeping a good journal of symptoms? Sometimes the improvements can only be seen by the slow dropping away of certian symptoms, and you can miss it if you are not keeping track. My symptom list is only half as long as a year ago. That's what keeps me going.

posted 04 December 2004 15:14               

He has been tested for coinfections and was negative, but we are pretty sure that he has Babesia based on his symptoms (drenching sweats, fevers, etc). He has no spleen.

What I don't understand is why he hasn't been treated for it yet. I think the rationale was that the heparin would really help him and I don't think heparin and the babesia protocol go together. Also, heparin in it's own way works against babs.

It's hard because we are nowhere near his llmd. He has to fly cross-country to get in, so he isn't seen so much.

Reading the babesia threads just worry me more. The protocols for it don't look like fun. I wish something would just fix him up more quickly.

posted 04 December 2004 16:08            

People do seem to have a hard time improving if Babesia is present and isn't treated. your husband's symptoms are suspicious.

Can you do any phone consultations with your doctor, to save some of the trips, but still be able to check in more often? I see my doctor once a month, and it is still hard to cover everything.

Are you getting any help? A sick husband and two kids is more than enough, without worrying about having to go to work.

There is a yahoo group just for caregivers of Lyme patients. I'm not sure how active it is, but you might get some support for YOU there. We are, of course happy to help here too! Not to send you away, but maybe to add to your resources.
Lovey on Lyme Caregiver Support

posted 04 December 2004 21:59               

We went after it with rife, with ozone steam therapy, and colloidal silver. I'm now pretty much fine, my daughter has her life back and still has some symptoms. We're continuing the various therapies.

My husband developed a chart for symptoms that is quite brilliant. As Riversinger says, she can see a big difference over time by looking back at her charts. We found this to be true. You can see with some clarity what the "trend" is, and it may not be what you thought.

orion

posted 03 January 2005 12:39               

Bryan

You can read reports from Lyme disease sufferers using rife machines here:
http://info.lymebook.com/listings.htm

posted 03 January 2005 15:52            

babesia is important to address. testing is inconclusive. he can continue with zithromax or biaxin with the babesia treatment.

you may want to look into a drug called plaquneil, which has immunomodulating effects and is very effective against lyme and babesia.

plaquenil is used in synchronicity with zithromax or biaxin.

plaquenil may be a very good choice for your husband. it packs a punch, like flagyl, and should be started very slowly and worked up.

bicillin is an excllent med for lyme. it has a high serum level. you could use this while taking the plaquenil, no interactions.

a combo of bicillin, plaquenil and zithromax or biaxin would be very good. much stronger than what you have been doing and with a much better efficacy of killing lyme spirochetes.

does your husband have a vascular or clotting problem? heparin is not very effective, from what i've heard, for lyme.

i would discuss this outline with your llmd and see what he/she thinks.

you also might want to have an immunology workup by an immunologist. abx can only do so much on their own if there is an underlying immune problem.

posted 06 January 2005 13:20               

I'm sorry to hear of your husband's lack of progress.

I wonder if he has any other tick-borne (or otherwise) co-infections that are undiagnosed.

Also, is there a possibility he has another illness (not instead of Lyme, but perhaps in conjunction with) yet undetected?

Finally, I am aware that some people have taken as long as 18 months to see any improvement.