LymeNet Flash: General Advice on my treatment

This is topic General Advice on my treatment in forum Medical Questions at LymeNet Flash.

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Posted by Tgym (Member # 23638) on :

Hi everybody. I havn't posted here in a while

and would like some thoughts on my situation.

I went 15 years before I was clinically DX'd

with Bart. My symptoms have always been

neurological only. LLMD put me on Invanz IV and

tindamax. After 15 days of treatment I had one

day where most of my symptoms were still present

but I felt energy like I havn't felt in years.

It was like I took an upper but it only lasted

for that day.

I was unable to continue IV after 15 days

because my GP who was the go between wouldn't

allow it.

6 months later after finally finding a new Gp I

went back to my llmd where we decided to try

oral Biaxin, suprax and tindamax.

Month 1 I had 1 day of feeling energetic like

that one time. Month 2 I had another day and

month 3 I had 5 days. Each time my nuero

symptoms were still present but I felt alive.

After month 3 I went another month and felt

flat. No more good days and I got a cold 3 times

in about a month and a half which was odd

because I never get sick.

Last week LLmd changed me over to 1 factive 5

days a week and told me to give it a few weeks

to see if there is an improvement. After less

than a week I am having a lot of dull pain on

the backside of my knee. Im taking 800mg of

magnesium and a lot of vit C.

So My questions are

1) Those energetic days, were they a breakthru

or a side affect of the meds(Ive never felt like

that off meds)

2)What do you make of me getting sick 3 times in

a month and a half. Does this mean anything?

3)Should I discontinue the factive because of

the knee pain? Is the pain normal or is it a

precursor to worse damage

Posted by joalo (Member # 12752) on :

Up.

Posted by Tgym (Member # 23638) on :

I posted this a few weeks ago and got no response and I'm hoping this time it will.
I've been on the Factive for about a month now and the pain in my knees and hips is the same. I'm taking it mon thru friday and by friday the pain is the worst.
Should I get off the factive now or try to push through

Posted by Maradona (Member # 24552) on :

You are hiting the infection and your load is going down .

Your immunity it started to work better that's why you been sick 3 times in the month with flu.

That is a good sign and more good days it means you are in the right track .

Body is fighting better and your meds are hiting infection so continue doing that.

What I don't see in your treatment and you have to have that is good antiviral to keep in control viruses and also you need at all times to have on board meds for yeast and 100Billions a day probiotics.

All this plus exercise and for sure you will have more good days and could be just 1-3 bad days in the month till you go in remision.

Take care

Posted by TF (Member # 14183) on :

I hope your lyme doctor is doctor C. in Florida. If so, you have the best in Florida, in my opinion.

The good days are to give you hope. As you treat, you will get more and more good days.

Every time the doc changes your medicines, you will feel worse at first. That's because the new meds have a different killing profile (method of killing) from the last meds, so a lot of germs are getting killed. Each time you kill off a lot of germs, you will feel bad.

Since you don't take meds continuously, it appears that you herx every week once you start up the meds again. Friday is the height of the herx. Pain is a common herx symptom.

Just know that each herx is a sign that you are killing germs. Do things to detoxify yourself and the herxes can be more mild. Drink lots of water, squeeze fresh lemons into it, etc.

I agree that exercise is also an important part of recovering from this disease. I encourage you to do weight lifting for one continuous hour every other day. This is the strong recommendation of Dr. Burrascano in his Lyme Treatment Guidelines. Lift very light weights and do a full body workout.

This is believed to drive the antibiotics deeper into our tissues, kill germs by raising our body temperature internally, and strengthen our immune systems.

I hope this helps you to begin having more good days.

Posted by Tgym (Member # 23638) on :

TF
Yes I am seeing Dr C.
My concern is that the pain is not from a herx but from tendon issues that could be caused by the Factive. My knees crack and pop each time I flex them.That is something that never happened before
Here's my daily pill intake
Factive after breakfast
Late afternoon
B complex 50
Magnesium citrate 800mg
CoQ10 400 mg
Ester c 2000mg
multivitamin
alpha lipoic acid 300mg
28 million probiotic
Vitamin D 3

Posted by TF (Member # 14183) on :

The fact that your pain reaches its height every Friday indicates that the factive is working. A tendon problem would not be that way--reaching its height every Friday. It would be continuous pain that just got worse the longer you are on factive. It would not let up at all.

I have a friend who takes an IV med Monday through Thursday. Her pain comes a day or so after starting the IV and it reaches its peak about every Friday. So, you are describing exactly the same cycle. It has to do with the meds building up in your blood and causing a lot of die off, a herx, every week.

Knees cracking and popping is a very, very typical lyme symptom. Others have lots of noise in their neck or other joints. I would not worry about that at all. These noises do not indicate tendon issues at all.

Noise in joints is totally different from tendon issues. Tendons join muscles to bone. So, a tendon issue would be pain, tenderness, tightness, or swelling near the back of your heel, for example. This is where a muscle ends and attaches to bone (the achilles tendon). Or, below the knee, where the tendon joins the lower leg muscle to your lower leg bone. Tendons are not in joints. So, joint pain or noise is not a tendon issue.

When you take a medication that is effective against the disease, you can get some new symptoms when you herx. That is really what I believe is happening with you, even if the cracks and pops are continuous. It really is not something I would worry about.

Do you think you have developed anxiety since starting the factive, or are you just afraid of factive causing you tendon problems?

It seems that factive can cause anxiety in some people.

I worried a little about tendon issues when I was on levaquin. Just be on the look-out for pain above and below joints. That's where tendons attach muscles to bones. It often starts as a tight feeling before it becomes actual pain. Don't ignore something like that.

But, it seems you are doing well on the factive. You have taken it a month without any tendon issues.

Posted by Tgym (Member # 23638) on :

TF
I have not had an increase in anxiety from the Factive. I'm a bit scared about the tendon issues because I work in construction and spend a great deal of time on ladders. If I had a debilitating injury I would be without my livelyhood.
Just to be certain what you're talking about, my pain and tightness all surround the front back and sides of my knee. Its generally a dull pain that causes tightness when I am immobile and gets somewhat better after flexing a bit. If it was tendons than it would be above and below the knee? Is this correct?

Posted by TF (Member # 14183) on :

Yes, if it were tendons, the pain and tightness would be right above and below the knee, right above the ankle, right above and below the elbow, right above the wrist, right below the shoulder, etc.

It would not improve with movement. In fact, you would not want to move at all because that would cause worse pain. Any movement requires the muscles to flex, and that would really, really hurt the tendons because they are attached to the muslces.

With tendonitis, MOVEMENT IS PAINFUL.

Here are some quotes from a website:

" If the normal smooth gliding motion of your tendon is impaired, the tendon will become inflamed and movement will become painful. This is called tendonitis, and literally means inflammation of the tendon."

symptoms of tendonitis:

�Tenderness directly over the tendon
�Pain with movement of muscles and tendons
�Swelling of the tendon

http://orthopedics.about.com/cs/sportsmedicine/a/tendonitis.htm

Also, lyme causes joint pain. It is probably the most common lyme symptom. And, the knee is the favorite joint to be affected by lyme disease.

Here is a section of the lyme symptom list from the Burrascano Lyme Treatment Guidelines for you to see:

Joint pain
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders

Joint swelling
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders

Unexplained back pain

Stiffness of the joints or back
(from page 9)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

So, the factive is working and is making your knee joint pain worse.

I know it is hard to wrap our minds around the fact that the treatment will make our symptoms worse at first, but with lyme disease, it is true that this will happen (due to germ die-off).

You are not actually getting worse. Some medical literature calls it "the healing crisis." It is worrisome at first. But, eventually patients learn it will happen and they just put up with it.

The favorite place to get tendonitis from the meds is your achilles heel. You haven't mentioned that at all, so I feel pretty sure that you really aren't having any tendon problems at all.

If you start getting terrible pain in the achilles heel when you try to walk, then it is time to stop the factive and call the doc.

Posted by TF (Member # 14183) on :

You may want to look at what desertwind said about tendon pain in this thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=105396;p=0

He is on levaquin which is the med that is famous for causing tendonitis.

Posted by Tgym (Member # 23638) on :

Thanks so much for the great info TF. You initials must stand for "terrific friend" [Smile]

If this is just pain fm a die off I will embrace it and deal with it.

Posted by ktbond007 (Member # 29495) on :

I too see Dr C in Tampa and I am taking factive. (along with flagyl and I have picc line) The pain for me is in my hands and feet.

I was told to take 1000mg vit c and 250 magnesium right b4 bedtime. Also, to double up on my probiotics.

Posted by TF (Member # 14183) on :

Good for you, 007. A great doctor is the key to getting rid of this horrendous disease!