My son has had two--both times he saw a man all dressed in black.

My husband says to ignore it--but my son takes a very low dose of abx--only once a month.

Any feedback is welcome.

Linda

The very first antibiotic I was given was Biaxin. I had experienced a lot of terrifying neurological symptoms up to that point, but not hallucinations. Starting around the 5th day on Biaxin, when lying in bed I would see the dark, manshaped figure in the front room. A man dressed all in black would be a good way to describe it, though mine was thankfully blurry.

I didn't believe consciously it was there, but seeing it made my gut constrict with fear. And of course, I worried that I might be losing my mind.

Amy Tan, the brilliant novelist who is now recovering from Lyme, regularly saw what looked like her husband standing over her bed. This was pre-antibiotics, and from recent interviews it sounds to me like these symptoms have been conquered by her successful Lyme treatment.

I tend to assume people know Amy's story, but if you don't you might want to google 'Amy Tan' and 'Lyme disease'.

As I said in the other thread, there is a reason that you don't read much about these types of symptoms here, but it's not that they are rare - it's just that most of us have had to defend ourselves from callous, ignorant doctors wanting to say we're just crazy from day one, so we don't readily admit to these sides of our experience (of course, there are also plenty of 'lucky' Lyme patients whose symptoms may not have shifted in this direction).
 

My son only showed one band of lyme--but the rest of us showed several.

We are all on the pulse method--were we only get one dose every 28 days.

My doc thinks the lyme reproduces every 28 days.

Doc is trying to keep us under the radar of the insurance and my husband and I to keep working.

The children were just diagnosed over Christmas. My doc has tried to get a hold of Dr. Jones. I want to call my doc and put a bee in his bonnet over this symptom--but husband says no. I got my doc a new fax number last week. Prior to that the number my doc was calling always said to call back during business hours.

I have no one to care for my children if I put them on IV. Honestly, I'm the breadwinner and it aint much. My husband is pure commission and really suffers with the lyme.

any help is greatly appreciated.

Linda

 

Let me guess... it is a Bicillin shot once a months for 'prevention of rheumatic fever'... officially. If that is what you are all taking I doubt it would give any problem, at least not directly. It is very low toxicity.

It could be stirring up a lyme symptom though, and as we know some of them can be strange.

I hear bits and pieces that alot of regular Docs are recognizing the LD problem and doing what they can for their patients under the radar. If your son were a teenager he could for instance get long term minocycline for his 'acne'.

The cost of IV tends to sent insurance straight into attack mode, but alot of us are on oral regimens, some fairly expensive ones even, and insurance is paying without complaint. (The Dr. we go to doesn't even offer the IV's.)

It sounds like you all already have adequate documentation for a diagnosis for insurance pacification purposes, with the possible exception of your son.

(Of course having only one positive Lyme band is like being only a little bit pregnant!)

With a little work documenting the diagnosis you should be able to get coverage for at least a decent oral regimen.

What you are doing is helpful, but I can tell you from personal experience you will need more than that to get better or even to not get worse.

I am in the same situation as far as being breadwinner and needing to function. I am being treated very gently so I am not so whacked by meds i can't get my work done. It can be done that way, and as an advantage it is not as expensive either.
 

Actually he gets zithromax. I usually take what is left over from what he and my three year old are diagnosed with.

This kid has ALWAYS been on abx. When he was 6 weeks old I asked the ped why his lower lip dropped. Ped told me that he was , "sorry your child isn't symetrical enough for you." I believe that was bells palsey.

From four months of age on he had constant ear infections (one surgery for tubes), constant sinus infections, and then strep throat until we had his adnoids and tonsils taken out. I told my husband he was allergic to antibiotics--he always felt worse a couple of days or week after taking them. It is no wonder the little fellow only showed one band of lyme--he has been treated with antibiotics for seven years.

Should I ask for Bicellin? My doctor is learning just like me. He is very receptive and open to different treatment.

Thank you so much for your feed back--it is reassuring to meet someone else who is also taking oral abx.

Thanks,
Linda

Bicillin is a SHOT, I'm sure he would prefer the Zithromax if given a choice!

It is a very slow release penicillin that is injected in the buttock, and slowly releases into the blood over a 3 or 4 week period.

The common use is to prevent a strep infection from damaging heart valves. The low constant penicillin dose keeps it in check.

A bigger dose of it will cure Syphilis, and weekly or more frequent injections are helpful for Lyme... as the two diseases are kind of like cousins. (both spirochettes.)

...Now you know what Bicillin is when you see it mentioned here!

You should be able to get on a daily regimen of something with tests like that to back you up. Zith is expensive, and insurance balks at that one sometimes... but there are other orals that are quite inexpensive and also give very good results.

Just about ANY antibiotic helps for that matter.

Maybe some can help with some info that your Dr. can use to justify longer term Oral ABX treatment to insurance. He just needs to be able to cover his backside in this hostile medico-legal environment.

My guess is with reasonable documentation of chronic Lyme thay will not balk at paying for any reasonably priced oral meds. They are happy to not be paying for the IV stuff.

I'm working now, but will come back to this later. Maybe we can help. Drop me an email if I forget.

(Added...) Did you CATCH that? I am WORKING right now. Want to know what I am doing? I am writing a computer software system, a complicated one! You don't have to let this stuff DESTROY you!

[This message has been edited by James H (edited 04 March 2005).]
 

Regards,
Shaz
 

I doubt pulsing a single Zithromax a month is going to do very much.

What kind of information can we (= us on Lymenet) give you to help you and to help your doctor help you?

My 14 year-old daughter was very psychotic on tetracycline treatment. We could find no evidence that tetracycline had this side effect, so we concluded the Lyme doctor was right and that t was the Lyme being stirred up. She has also had absence seizures.

I can't imagine one pill a month. Our Lyme doctor hits Lyme very hard. How does your doctor know that the bacteria are reproducing the same day you take the antibiotics?

I would try to find a way to get your son on steady oral antibiotics, preferably a combination (maybe not at first, but soon).

If there is a way tog et him retested after a few weeks of anitbiotics, or even when he is psychotic, he might come out positive now. I converted to fully positive after a few weeks of meds.

Was he tested at Igenex or another good lab? Your Lyme doctor, through Dr. Jones, could help you get a est at a good lab if he wasn't.

It is very scary when our children have these problems. Psychiatric crises are very common in untreated Lyme, and also during treatment when the bacteria are stirred up or when they are dying off (a "herx.") You're not alone!

I have gotten two fax numbers and one phone for Dr. Jones--but my doc and I haven't gotten any response.

Last night I talked to Mary in PN and she gave me a nother phone number and I am going to fax that to my doctor at lunch.

My doc hasn't treated any children. We have been trying to contact Dr. J.

My husband and I take one antibiotic a month. Every 28 days. We are trying to keep our jbs and our insurance. Plus not get my doc in trouble.

We can't afford to go to NJ but really want Dr. J's input and guidance.

Hopefully the number I have now will work.

We are talking about hitting me or my husband hard and fast and seeing if we can get one of us cured and then go after the other one. We need to have one functioning adult in the house with the two little children. Family and neighbors think we are nuts--don't believe in lyme in the southeast.

Thank you again--any help is appreciated.

Linda
 

Hitting it hard and fast doesn't seem to work well with this stuff. It has a very slow metabolism, so any treatment needs to be over a long time.

When there is the critical need to work slow and steady with a mild enough dose of something that won't interfere with your ability to work can give good results. That is what we are doing and I am not only able to continue working, I am seeing gradual steady improvement in my ability to function.

Our Dr. is of the opinion that it is seldom possible to COMPLETELY eradicate the Borrelia with anything currently available... so instead of nearly killing ourselves with overdoses of multiple antibiotice in hopes of doing so... gradually pound it down while at the same time doing everything possible to improve one's general health so the body can fight its own battles.

We are just on oral Minocycline... the same stuff prescribed longterm to teenagers for acne. The generic versions are inexpensive compared to most things. Doxycycline is similar, though not as good at getting into brain tissue... and it is DIRT cheap.

Minocycline or other tetracyclines would not be appropriate for the little one of course as his teeth are still forming and they can be permenantly discolored. Thsy don't use them for children under about 10 for this reason. He could still be given various penicillins, cephalosporins, or macrolides though... there are still plenty of choices and not all are terribly costly.

There are plenty of things for your Dr. to choose from that would not knock you flat either physically or financially.

Also there are supportive measures, both nutritional and prescription that can help with work inhibiting symptoms such as brain fog.

The steady, moderate dose oral antibiotic approaches can give good results for people in our circumstance.
 

I get frustrated. I will have about one good week a month and probably work too hard that week. I get frustrated because my husband's always is sick--he never feels good.

My doc has talked about oral Minocycline if the insurance company comes after us.

We are eating organic. I just wish we had the energy to exercise a little.

Would you write here or email me about the supportive measures both prescriptions and supplimental?

I really appreciate all yur help--since we are on the same page.

God bless,
Linda
 

Do you know if any of you have co-infections, if you have been tested for them?

We had a mild strain of just plain old Malaria that was giving us alot of misery. It is easy to treat, but lab tests don't show it, you have to actually look at the blood to find it. That probably is less likely in Tennessee than it is in S. Texas... but it once was in that area too according to a map from W.H.O.

I mentioned that because sometimes we have to think outside the box to solve a problem.

It sounds like everyone is TERRIFIED of that insurance company! Are they really that bad? If so, one wonders what good are they, if you have to be afraid to ask for medicine when you are sick.

I'll share any ideas I can come up with.

 

I wll tell you about 2supplemental things that hubby's new LLMD prescribed for him that made a huge difference.

The first is b12 injections 3X week for 3 months. They are very small needles and have increased his energy 10 fold.

The 2nd was "Armour Thyroid". It costs about $ 60. for a 2 months supply at Wellness Pharmacy. It is a script med and you may be able to get it at your local drug store. He had a very low body temp and Dr. decided thyroid was involved.

He now has more energy than he can use in a day, so Dr. has cut b12 to 1X week.

Now if we could just make some progress on the Lyme!

Just a couple of ideas you may want to ask your Dr. about.

Good luck.
Wizard

 

Your Doc would of course have to do labs to see if there is a thyroid problem before prescribing that. Check his body temp a few times a day... if it tends to run 96 or 97 instead of the usual 98.6 area that justifies the lab work.

Also, my Dr checked my testosterone level and found it very low... another common Lyme thing. Fixing that made me feel a bunch better, more energy and more 'normal' feeling.

I've taken the B12 for years off and on. Go to a Walgreen's and get a bottle of their sublingual drops for about $6. They don't work as good as the shots, but still help some.

B12 is helpful for just about everybody... feed stores even have injectable B vitamins in big bottles for your large size 'pets', to make them feel better and avoid anemia etc.

[This message has been edited by James H (edited 08 March 2005).]