How long to wait for results?

[eann]

I have been on doxy for about 5 months now. I have seen a decrease in the days that I run a fever. For months I had run a fever of 99.6-100.6 just about every day. Now, it is a few days here and there.

I do not see any decrease in the pain or exhaustion (fatigue is too nice a word) that haunts me daily. When I sleep at night, I feel a constant severe burning pain pretty much all over.

I have been diagnosed with RA. I feel as if my whole body is inflamed.

How long do you wait before trying something else?

[lynnie_sydney]

eann – this is a long and slow road of treatment. However, after 5 months, you would expect to be noticing some improvements, even if minor. I would say that it is time to do a little detective work. Take a look at this page from our main site about things to check if you are not seeing improvement for some ideas about this.  https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html 

I am wondering if there was a reason for you taking doxy rather than mino – which tends to have better tissue penetration? If not, then it may be an idea to try switching. Also, if you are suffering severe inflammation, then whatever abx you are using will not be able to do its job, because it will not be able to reach its target through the inflammation. What dose and frequency are you on? It may be wise to have a wash-out period to rest your body for a week or so, then re-commence at a lower and more spaced out regime. 

Finally, severe burning pain all over your body doesnt sound typical of RA. Do you have an AP doc with whom you are working? Might be time to consult with one, if not. Also, have you been tested for Lyme? All just possibilities for you to comnsider and hope you find some answers soon. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

[user=1962]eann[/user] wrote:

I have been on doxy for about 5 months now. I have seen a decrease in the days that I run a fever. For months I had run a fever of 99.6-100.6 just about every day. Now, it is a few days here and there.

I do not see any decrease in the pain or exhaustion (fatigue is too nice a word) that haunts me daily. When I sleep at night, I feel a constant severe burning pain pretty much all over.

I have been diagnosed with RA. I feel as if my whole body is inflamed.

How long do you wait before trying something else?

Hi Ann,

I went back to look at your old posts to try to remember your story. What are your labs looking like after 5 months on doxy? Any improvements in inflammation markers…is it right that you had a diagnosis of Fibro and then a later diagnosis of RA based upon x-rays, but seronegative for RA?

Are you taking any other meds in addition to doxy? Are you still on 100mg doxy twice daily?

Also, with constant fevers, just wondering if you might have other infections going on that may need separate treatment. Not sure where you are located, but have you considered Lyme as a possibility? If not, you might be interested to read up on babesia, which is a malaria-like protozoan coinfection of Lyme that behaves similarly, typically causing fevers and sweats/chills amongst other things. If you go to this link and scroll down a ways, you will find a number of articles on coinfections of Lyme, including babesiosis and it's symptoms/treatment:

http://www.lymeinfo.net/coinfections.html

A fever spike with an initial herxheimer is pretty normal, but to have ongoing fevers is probably cause for further investigation. If there are no improvements in labs or noticeable physical improvements by months 6 to 8, then it's a good rule of thumb to go back to the drawing boad to figure out what may be blocking progress.

You mentioned not being able to take mino due to gut issues – was that generic minocycline or brand? Sometimes switching to brand or even another generic can make a difference, too.

Hope something here helps or that someone else here has something to share that resonates with you.

Peace, Maz

 

 

[eann]

Lynne, thanks for your response. I am on doxycycline because minocycline caused severe gut issues. I actually started on the doxy for rosacea, an inflammatory skin condition. After 4 months, it decreased the daily fevers, so I did some research and found this site.

My rheumy let me try mino, but it tore up my gut, even with probiotics. So, I am back on doxy. I looked over the list in your link and I have the book-New Arthritis Breakthrough and have read it.

Even my rheumy looks at me and shakes her head. She says I should not be running fevers with RA. I have been through most of the drugs they use to treat RA. I am on 5mg. of prednisone daily for inflammation. All the other meds I take are to treat pain and a few other problems.

I thought I could do this with my current rheumy because she is close and cooperative. Not so sure anymore.

[eann]

Hi Maz. I don't really have many blood markers to look at. The only thing that has ever been positive is ANA. It has been showing up positive for 17 years, not real high, 1/350, if I remember right. MRI of my hands showed inflammatory joint destruction and most all of my joints hurt. The awful burning pain at night just doesn't fit into the picture.

Not really taking any arthritis meds. except for prednisone, as I mentioned above. I tried brand name minocycline. The manufacturer is TEVA.

I read a little about Lyme, but another disease to consider is daunting. I am thinking about going to a doctor who specializes in all of this. I don't know where to start. Do I go to an AP doctor or a Lyme doctor?

I see you have Lyme Disease. Have you had fevers and severe burning pain? I have had many tick bites as a child, but I am in my 50's now. Never any noticeable rash. I have been sick for 17 years and been through all that conventional medicine has to offer and tried 3 different holistic doctors for years too.

I guess I need to do some more reading on Lyme disease.

Thanks, Ann

[Maz]

[user=1962]eann[/user] wrote:

I don't really have many blood markers to look at. The only thing that has ever been positive is ANA. It has been showing up positive for 17 years, not real high, 1/350, if I remember right. MRI of my hands showed inflammatory joint destruction and most all of my joints hurt. The awful burning pain at night just doesn't fit into the picture.

Not really taking any arthritis meds. except for prednisone, as I mentioned above. I tried brand name minocycline. The manufacturer is TEVA.

I read a little about Lyme, but another disease to consider is daunting. I am thinking about going to a doctor who specializes in all of this. I don't know where to start. Do I go to an AP doctor or a Lyme doctor?

I see you have Lyme Disease. Have you had fevers and severe burning pain? I have had many tick bites as a child, but I am in my 50's now. Never any noticeable rash. I have been sick for 17 years and been through all that conventional medicine has to offer and tried 3 different holistic doctors for years too.

I guess I need to do some more reading on Lyme disease.

Ann, if you've had a history of tick bites (doesn't matter how long ago) then it's definitely worth getting tested for Lyme, even if your past standard tests were negative. The more sensitive testing and preferred lab is at http://www.IgeneX.com  You simply call them for a test kit, get your doc to sign off on the basic Western Blot (test numbers 188 and 189 costing around $200…some insurances will allow claims) and then go to your local Quest or Labcorp, get them to draw, process and pack the blood in the kit, and then mail the blood sample, paperwork and your check back to the lab in the mailer they provide. As your doc has been open to helping you thus far, she may be open to signing off on these labs for you, as they do require a doctor's signature. If you choose to have this test run, we can help with interpretation of your results, so be sure to get a copy (even if the doc says it's a negative). There are some very significant bands on the IGeneX Western Blot and even Indeterminate readings can be important to a diagnosis.

Once you have some idea of whether it is Lyme or not (testing helps, but a true diagnosis of Lyme is based on the whole clinical picture by a Lyme Literate MD – aka an LLMD), then we have a listing of LLMDs by state we can share with you.

Deciding whether to pursue Lyme treatments as opposed to straightforward AP is quite important, because Lyme treatments vary quite a bit from low dose AP in both combinations of abx used and doses. There are many coinfections of Lyme that can impede progress if not adequately treated.

Lyme is notoriously immune-suppressive, so sometimes people don't produce enough antibody to test. Lyme can also cause elevations in ANA and other bloodmarkers for rheumatic disease. Fibromyalgia and RA have both been closely tied to Lyme. In fact, Lyme was first identified in Lyme, CT, when an inordinately large cluster of people came down with JRA and RA. 

Hope something here helps in figuring all this out, Ann. Others may have some further suggestions for you that may help. My best suggestion as a fellow patient is that, with recurring fevers, a history of tick exposures and symptoms of FM and RA, I'd definitely be inclined to look into the possibility of Lyme and coinfections. 

Peace, Maz

PS Interestingly, a common rheumy drug is plaquenil, originally made to treat malaria! 😉  

 

[Parisa]

Ann,

My husband had the fevers and the burning pain.  The fevers went away when he was put on high dose prednisone.  The disease unfortunately didn't go away as well.  A year into his disease we discovered he had Lyme and Babesiosis.  A Lyme protocol, with the Babesiosis protocol actually being the most important, has brought him almost back to normal.  I know it is overwhelming to consider another disease and protocol but welcome it as an opportunity to maybe find out why you've been sick so long and to find a treatment that works.

[Kim]

Hi Ann,

I am another Lymie and couldn't agree more with Maz and Parisa that you should have the Igenex Lyme test run.  Lyme is very controversial and most doctors won't touch it with a ten foot pole, nor should they.  It absolutely requires a Lyme specialist, LLDM, with a proven track record, because it's complicated and uses high dose antibiotics.  We've had lots of Lyme discussions on the board that you can “Search” if you're interested.

Take care…..kim

p.s. The current Lyme bible is: Cure Unknown by Pam Weintraub, an excellent read explaining the Lyme wars and why everything is so screwed up.

[eann]

Hi Maz. I've had a bit of an interruption, as my dog started having seizures yesterday evening. She then can't walk right, but runs around the perimeter of the rooms running into walls. Don't think she can see right? I am taking her to the vet in a couple of hours.

Being up most of the night, I did read some of the info on the link you provided. The symptoms mentioned do sound like my life for many years now.

Is it better to have this test for Lyme done first or go to a LLMD first? Will the test still be positive after all these years? I had a Lyme test recently from an MS doctor and it was negative. I take it this test is not the best?

I do know I have many areas of demyelination in my brain. That was the reason I saw an MS doctor. He decided it was not MS, Lyme or Lupus. Problem was, he had no idea WHAT it actually was from. I've spent the better part of 2 decades being told what I DON”T have.

I have one more question. I think I noticed lymph node enlargement as a symptom also. Is that correct? I was seen last year by an oncologist for seriously enlarged abdominal lymph nodes. They thought I had lymphoma. Thankfully, I didn't, but once again they are still enlarged and they have no answers.

Thanks again, Ann

[eann]

Hi Paresa.

I am glad your husband has improved. May I ask how long it took to see improvement?

The doctors look so puzzled when I tell them of the burning pain at night. Don't really even know how to explain it. The only thing that has ever helped me is high dose prednisone. Can't keep that up though and I know it is just covering up the symptoms.

Thank you for the encouragement. I really do appreciate it.

Ann

[eann]

Hi Kim.

I will definitely look up the book about Lyme Disease. I can't understand why doctors have to make things so difficult when all people want is some help.

Why exactly is it so controversial? Do mainstream physicians not believe in chronic lyme infections? I work in the healthcare field and have seen the egos of some up close and personal. It is not pretty and not really necessary either.

I live outside of St. Louis. If there are any good LLMDs close by, could someone please PM me. If there are none here, I would be willing to travel.

Thanks again, Ann

[Kim]

Ann,

This is your lucky day!  Probably the best LLMD in the midwest is in Missouri.  I'll PM you his info.  I drive 450 miles to see him and it has been worth the hassle because I'm in remission.

Take care….kim

[JamesP]

[user=1962]eann[/user] wrote:

I have been on doxy for about 5 months now. I have seen a decrease in the days that I run a fever. For months I had run a fever of 99.6-100.6 just about every day. Now, it is a few days here and there.

I do not see any decrease in the pain or exhaustion (fatigue is too nice a word) that haunts me daily. When I sleep at night, I feel a constant severe burning pain pretty much all over.

I have been diagnosed with RA. I feel as if my whole body is inflamed.

How long do you wait before trying something else?

I personally saw noticable improvement around mon.th 6 and much improvement around month 8

[Maz]

[user=1962]eann[/user] wrote:

The symptoms mentioned do sound like my life for many years now.

Is it better to have this test for Lyme done first or go to a LLMD first? Will the test still be positive after all these years? I had a Lyme test recently from an MS doctor and it was negative. I take it this test is not the best?

I do know I have many areas of demyelination in my brain. That was the reason I saw an MS doctor. He decided it was not MS, Lyme or Lupus. Problem was, he had no idea WHAT it actually was from. I've spent the better part of 2 decades being told what I DON”T have.

I think I noticed lymph node enlargement as a symptom also. Is that correct?

Hi Ann,

What great news that you are in MO and have a good Lyme Literate MD in your state should you need him. 😀 Kim can give you all the details on this doc. A lot of LLMDs (Lyme Literate MDs) have to work out of network and I'm not sure if Dr C takes insurance or not – something Kim can fill you in on – but what I do is pay up front and claim back what my PPO insurance will cover.

Most folk here who suspect Lyme will have the test run first, but because Lyme docs often have long wait-lists, it's worth making an appt asap and then it can always be canceled if there is some question about the test results. Once blood is mailed to the lab, it takes about 2 to 3 weeks for results to go back to ordering physician.

Yes, standard tests miss 50% of cases, unfortunately, which is why the IGeneX labs are preferred, as they offer more sensitive testing, including bands that were removed in the 90s when they were creating Lyme vaccines. There is a ton of info on past discussion threads about the “Lyme controversy,” so you can type those key words into the search box above and a lot of info will pop up you can wade through. That said, no Lyme test is 100% accurate, purely by virtue of the fact that Lyme is so immunosuppressive and the organism so pleomorphic (hiding in various forms deep in tissues) that the body doesn't produce enough antibody to test. Dr C has written a great article to interpret the IGeneX labs once they are returned and he says even one band positive on any of the significant bands for Lyme is enough to indicate Lyme, taken with a the whole clinical picture.

There was also some info in the RBF Fall 08 eBulletin for an abridged 101 on Lyme politics:

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

Re: demyelination of the brain (and cerebral vasculitis)…there is some good info on the Columbia Lyme website and you can search out articles on their search engine. Here is a quick one I pulled up, but one point worthy of mention regarding this article is that spinal taps are no longer being used by LLMDs as they only pick up a very small percentage of cases:

http://www.columbia-lyme.org/patients/ld_spinal_fluid.html

I've done a bit of research on the MS/Lyme connection as my brother has MS. Here is another link of my doc speaking on this topic (scroll to Dr S P, third clip from bottom):

http://www.ctlymedisease.org/videoclips.htm

Your story of going from doctor to doctor with no one being able to tell you what you have is pretty common for Lymies. They get sicker and sicker and each doc passes them along. Another commonality in the Lyme complex is lymph node enlargement, for which lymphoma should always be ruled out, as you have done, but very common with Lyme, too. It's an organism that drills into any tissue it can get into (a spirochete, like syphilis, which also caused all manner of multi-system breakdowns and it's chronic form requires longterm abx).

Sorry this is getting so long, but trying to answer as briefly as poss! Lastly, coming up in late April is the Physician's Round Table in St Louis! There are many LLMDs and other physicians speaking on the topic of Lyme and related issues. As you are in the medical health field, you may be able to get in for this event, if interested! Wish I lived near to you and could come! RBF went to this event in NC last year.

http://www.peerobservations.com/Roundtable_2010.htm

Oh…one more thing….the burning pain…yes, had that very badly in the early days. Words can't even begin to describe that kind of pain, which I suspect is probably neurological, as a result of the infection causing inflammation in the nervous system and brain…shooting, burning pains, burning muscle pains, burning joints. :crying:  Took about a year on various Lyme protocols, but it eventually went away.

Ann, so sorry to hear about your pooch having seizures. Cheryl F's dog has been going through similar…if you PM her, she may be able to share what she's been doing for her dog.

Please only take what resonates here, Ann. As you know, we're only fellow patients who have lived various experiences, and can only share these in the hopes it may provide further info to pursue in your own researches.   

Take care and hope your researches lead you to some answers. We're here if you need support along the way.

Peace, Maz

[eann]

I wanted to thank everyone who responded to my questions. It will take me a while to digest all of the info provided.

I tried to call Dr. C today, but the office was closed. I will call again on Monday. I see my rheumy again in about a week. I wonder if I should consult her on the idea of chronic lyme? Not sure.

I will stay on the doxy until I can into Dr. C's office. I really feel I have nowhere to go but up. Then I think about it and remember that every year I get worse and will not be able to function soon if nothing changes. I have a few hours of time that I can function each day and even that window of time is closing.

My main concern is whether this will help. I have spent all my resources on various treatments over the years with little to nothing to show for it. I have been looking at personal story threads and I see that it is a long, bumpy road.

Kim, thanks for the info and I see you are in remission. It is great that this doctor is only 2 hours away from me. I am going to look for the book also. I am so glad to hear you are in remission now.

Maz, thanks for your help and info also. I would love to go to that seminar in St. Louis. I am an RN and could use it for CE credits too. My only problem is that I can't function in the morning. I can't do much before 2-3PM. I have until the 10th to register before the price goes up. I will decide by then.

If anyone is attending, please PM me. It would be great to have someone to attend with.

One last thing. We had to let Daisy go to sleep, as she had a stroke and the seizures would not let up. She was 14 and had as long and pleasant a life as a beagle could hope for. Still sad right now.

Thanks so much, Ann

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