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Old 01-08-2009, 05:39 AM   #1
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Help for my husband doing IV Rocephin-scared-sorry, long thread

We live in a very high Lyme area of the country. My husband has been suffering from a bunch of strange symtpoms over the last 3 years. He has seen multiple doctors over this time period. The most serious problem for him was a constant head pressure that would not go away, that developed in July of 2007. About 6 months ago, he developed a thyroid problem, and started synthroid to treat it. Finally, being convinced he had Lyme disease, he started seeing a LLMD in NJ about 2 months ago. After a positive spec scan of his brain along with his other symptoms, she concluded he definitely does have Lyme disease, which we think he got sometime in the fall of 2005. He has never had a positive blood result for this at all.

She started him on oral antibiotics for about a month, and most recently, he has started IV treatments of Rocephin, which he will have to do once a day for god knows how long. Along with the Rocephin he is taking Probiotics, and also Milk Thistle and Uva Ursi herbal medicines for his liver and kidneys, which are already showing signs of problems from his most recent bloodwork.

He is feeling very weak and sick from being on all this medicine-this morning he told me that he worries about the future, and he has been pushing himself to work every morning, which involves a 50 minute commute one way.

My question-is it normal for someone starting Rocephin to have side effects like this, mainly causing weakness? Or could it be the herbal meds? Or both?

I am so scared that he will not be able to function at all at some point from all these meds, including even being able to work anymore. He told me he has no other choice-he needs this antibiotic to get rid of this disease, or it will eventually kill him. I'm very scared-We have a 4 year old daughter, and I have been doing pretty much 100% of everything involving her to help him so that he could rest at night, since I stay at home with her. This has literally been hell for us, especially these last three months or so. Neither of our families understand this illness, and discuss it as if it's nothing more than the common cold. No help or support there. All of this stress is starting to take a toll on me and our daughter as well. Not to mention the fact that I also have chronic muscle aches and pains,(I could very well have this disease too) and have to drag myself through the day surviving on advil.

Any feedback from someone knowledgeable that knows about these IV treatments, long term prognosis, and side effects would really be appreciated. I'm not sure where to turn at this point.

I'll take any advice and support at all at this point-thanks.

 
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Old 01-08-2009, 09:02 AM   #2
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Re: Help for my husband doing IV Rocephin-scared-sorry, long thread

Hi Jodie-Thanks so much for your reply, and helpful info. Hopefully you can help me with a few other questions-

I was not aware Lyme could be transmitted sexually-I've been suspecting the last few weeks that I could possibly have it too, but my hubby is going through so much now himself, that when I mentioned the possiblity to him, he got really angry. I have been attributing my symptoms to perimenopause, as I am 42-but that's as far as I've taken it. I had a negative Lyme test in 2006, but nothing since. I have an appointment with my MD next week-and I am ordering a Lyme test for myself. Any suggestions on what I should request testing for? Besides the Western Blot? Also,I do not have any profound fatigue or lack of energy which is commonly associated with Lyme-only occasionally, as I am caring for our little one 100% of the time now. With true Lyme, isn't chronic lack of energy a common thing?

My husband sees a LLMD in NJ-not sure I'm allowed to mention her name on here, but most of her practice is Lyme patients who are very sick. She's very abrubt, but supposedly ver good. She's costing us a small fortune to treat my hubby. We can't afford to both see her at the same time.


My husband had a positive Spec Scan done(result-severe brain inflammation)-not sure what co-infection testing he had if any at all. Can you tell me what those tests are in case he might need them?

Also, if I had Lyme for awhile, isn't it true that it wouldn't show up in any bloodwork at this point? What treatment options should I pursue at this point? Is there anything I can suggest to my MD as far as extensive testing?

I'm sorry for all the questions-this is just so scary. Sorry you have been dealing with this yourself for so long-you are so knowledgeable and it is so good that you are trying to help other people by passing along all your great information.

Dawn

 
Old 01-10-2009, 02:07 PM   #3
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Re: Help for my husband doing IV Rocephin-scared-sorry, long thread

Hi - I live in Nj too and am looking for a lyme doctor. I am pretty sure you are allowed to mention names on here - there is actually a thread where people post their doctors names. Is her name Emelia Erias? In Jackson? I here she is very good and am considering going to see her, but I am so broke...I don't think any of these Lyme doctors take ins. None that I have found anyway.

I just recently had an MRI of my brain and auditory canals due to severe tinnitus and they said I had "scattered areas of abnormal signal intensity within the subcortical white matter of both cerebral hemispheres. They may represent the sequelae of migraines (which I do not have), hypertension (which I do not have) and Lyme". I have been sick for over 25 years with a diagnosis of Fibromyalgia, but I highly suspect now I may have chronic Lyme and need to find a doctor to get an accurate diagnosis.

MaryAnn

 
Old 01-11-2009, 08:10 AM   #4
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Re: Help for my husband doing IV Rocephin-scared-sorry, long thread

Hi Dawn, I'll try and aswer your questions

The co-infections are Mycoplasma Pnumoniae, Chlamydia Pnumoniae, Erichiosis, (think I spelled it correctly), Bartonella, Babesia, and then there are things such as checking to see how high your titers are for Epstein Barr, Cytomeglovirus. and other herpe virus's.

If you are seeing Dr. E then I am sure hubby is in great hands. I have read about her across the boards.

There are many other bacteria's and virus's that we can get from ticks, blood sucking insects as you know. I just read about worms we can get the other day. ugh!

They say that for testing Igenex is the best lab to be tested from. You can order the kit on line and your doctor can help you with the rest. I myself was tested twice from Igenex and always came up negative. I have learned that lyme testing, is not accurate. The bacteria "does not" like oxygen. So they imbed themselves in tissue, bone, muscle, organs, ect...This is one reason why people truly need to see a lyme doctor, so they can go on symtpoms and not solely on a test. There are over 300 strains of lyme and not all are tested for.

Testing also is not good for babesia there are many strains of it and not all of them are tested for. I also did not test positive for this but had every darn symptom there was.

So if a person test negative for any of these test this does not mean they don't have the bacteriaor what ever is being tested for. It just means that either they have a different strain that is being tested for or the test isn't sensitive enough, or it isn't in the that area of the blood stream at the time...

Everyone reacts of lyme and all of these other little critters diffferently. Some people just have aches and pain, some had just alsheirs, dementia, ect...ect. You don't have to have lack of energy. It just all depends on each individual, and how our bodies are affected. And what combinations of co-infections we have...Were all different. So how one person is, doesn't mean the next will feel that way...(make sense?)

I understand about the expense of seeing a Lyme Doctor. But trust me, it will save you money in the long run, and health is soooo important not to mess with.

I hope that helped to answer some of your questions.

Jodie

 
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