LymeNet Flash: Chronic Lyme sufferers--how much relief did you get from IV abx?

This is topic Chronic Lyme sufferers--how much relief did you get from IV abx? in forum Medical Questions at LymeNet Flash.

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Posted by griswoldgirl (Member # 5365) on :

Unfortunately, I am one of those people like many of us misdiagnosed and told I needed a shrink for 15 years by over 40 of the country's finest physicains before I was properly diagnosed by DR. J in NC 1 1/2 years ago.

I did the IV thing, two meds at a time, pulsed with flagyl once a month, mepron for the coinfections etc. We stopped IV after approx 8 months for two reasons. I did nothing but herx the entire time and my liver values were going up too high.

after a "wash out" period I was to continue with orals--the plan was ketek and levequin and still pulsing flagyl once a month. I was on and then off and on and then off due to liver values again. Long story short after being so exhausted for 6 months in bed most of the time after stoppin IV's, I found out that I have a liver disease called NASH and cannot continue treatment of abx of any kind due to liver damage.

Bottom line is the NP I see at Dr. J's clinic and I were talking the other day and we were talking about how everyone's recovery or lack thereof is so different. Unfortunately I never had a real "healing experience" and therefore I am now at the point of the grieving process of accepting that my level of wellness today may be it. We can treat the symptoms ie pain etc. I am eating real healthy, exercising trying to loose some weight--along with NASH comes raised triglycerides, cholesterol and sugar.

I am learning how to laugh at myself even harder than I did for years with the other 15 diagnoses I had at my lyme brain. It is hard at times because I was a lover of life (still am at times now), especially the outdoors. a typical A type personality: smart,whitty and able to juggle 10 things at once without flinching. Now if the phone rings and I am loading the dishwasher the fight or flight responce starts the stress process until I breathe deep a couple of times and sy to myself," you can handle it."

A big day is making 3 phone calls and doing a load of laundry and picking the kid up from school.

What is not fair is the fact that my whole family suffers. I lost 60,000 a year in income because I can not for now work. BTW- I am an ultrasound technologist who specialized in obstetrics (high risk) and neonatal intensive care patients. I got to see all the twins and triplets. I miss bonding with my patients. I absolutely love what I do for a living when I am able to do it.-back to the family--

of course I have been denied disability and now am awaiting a hearing which in NC is running about a 18-20 month wait. Monitarily we were used to such luxuries as renewing our tags on time for our cars, buying clothing, shoes and some take out once in a while. Now it is roof, food and gas so my husband can get to the job he hates to pay for the roof and food.

Don't get me wrong, Katrina has put things in perspective for me. I have a roof--amen.

As usual I am long winded. If you made it this far, tell me about your journey with chronic lyme. Let me know about yours. I want to hear the sucesses and the strugles.

Cathy

Posted by liz28 on :

Gris, I don't know anything about your liver problem, but can say with confidence you should seek out a second opinion on the Lyme. The combination of levaquin with ketek and flagyl is lethal.

Posted by janet thomas (Member # 7122) on :

I was on ketek and ceftin for a bit. When levaquin was added , ketek was dropped.

I gotta agree with liz.

Posted by SAK (Member # 7387) on :

Gris,
I was misdiagnosed for 18 years with MS until I figured it out myself. Of course, all these years took their toll. I was able to walk in the last while but not as great.

Now, after doing something as stupid as taking flagyl (1500mg) for 5 days in June, and then taking levaquin for 3weeks in Aug, I'm so much worse.

I can barely walk. I was a real go-getter too. I would handle a thousand things, no sweat. Now, I prefer to stay in bed as much as I can. I'd rather not do anything at all. It's such a big change!

The dr I am seeing now has me on ketek and IV clindamycin.

It's only been one week on IV so I don't know for sure. I do know that on the days I have IV some symptoms are better...but of course not the walking!

It's such a disappointment, I know. We try to get better after finally knowing what's wrong with us and it gets worse (at least for me).

Have you tried taking Milk Thistle to support your liver? Maybe you could use the time off to get it back in shape.

Try your hardest to keep the hope alive. Some oral abx can cross the BBB like IVs. So, maybe your LLMD knows how to handle Lyme without IV until your liver can recover.

------------------
Bye for now,
SAK

Posted by tjtighe (Member # 4057) on :

Liz, Can you explain why the como of Ketek, Levaquin, and Flagyl is "lethal"? Thanks

tj

Posted by pab (Member # 904) on :

Jordan is on IV Primaxin - 250 mg 3 times a day.

He is finally starting to feel better. He has been sick for a long time and had tried many oral meds.

Posted by beachcomber (Member # 5320) on :

Gris:

I did pretty well on IV meds. I am still only 50% better after 2+ years. But, I had to switch to IM meds because my superior vena cava kept collapsing. Have you considered IM. Orals besiacally do nada for me, except give me a belly ache.

I recently went for another opinion and was told I need a complete psychiatric evaluation because I am so fatigued all the time. Duh! I have Lyme and YES I am tired. I am not psychotic.

Don't give up.

Bc