LYME AND CO-INFECTION SYMPTOMS

[Creative77]

Hello,

I was wondering if there was anyone out there on this forum that has Lyme disease and/or any co-infections.

I was just diagnosed with Lyme disease this June since having symptoms since Nov 2011 and just started IV Rocephin with Tindamax (for the cyst form of Lyme).

I was having extreme hip pain (couldn’t walk without crutch) and extreme muscle pain and twitching along with burning fingers and toes. The bottoms of my feet hurt and my large toes burn as well. My LLMD seems to think I have Bartonella as well. I was tested for co-infections through my regular doctor and they were “negative” but I don’t believe the lab was adequate enough.

My LLMD wants to treat the bartonella in a few weeks after the Rocephin (which I have been on for a few days now). I am starting to walk a little without my crutch (with a slight limp).

What was your experience with Lyme and/or Co-infections. What were your symptoms and what medications did or are you using and have you achieved remission?

I would appreciate any input you may have and would love to hear your thoughts and advice.
Thank you so much and I look forward to hearing from you.
Creative77

[lynnie_sydney]

Hi Creative
Yes there are many here who have Lyme/co-infections and I’m sure you’ll receive a number of responses. The symptoms of Lyme and co-infections are almost endless because they tend to manifest where there is existing genetic susceptibility. Most here have the various rheumatic symptoms because this is a site that focuses on that. Probably the Joseph Burrascano Treatment Guidelines of 2008 are still recognized as the most comprehensive document on Lyme and co-infections. Symptoms of each type of infection are well described.

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

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)

[Debbie star]

Hi Creative, I am wondering if i too have lyme co-infection.. I have scleroderma.. but in December last year i got chronic pain..everything in my body seemed to seize up.. My feet are in extreme pain and my ankle bones (inner)and my hips (sort of below hips), but i cant walk as the pain is too much to deal with..I cant put shoes on only slippers
My muscles in my legs and arms were so heavy and painful i could barely lift them
My feet feel like i am walking on gravel and i have a hard time even sleeping on the bed as it feels like i am sleeping on a gravel driveway.. Do you or any others have these symptoms??

have you found anything to stop that pain??

Do you find the r alpha lipoic acid helps with the feet pain at all

i will check out the link as well

Would love to hear of any similarities or suggestions, thanks

[cavalier]

Hi – i have Lyme confirmed in testing & I also recently have had Bartonella come to light they are in addition to diffuse systemic Scleroderma & alot of inflammatory markers. It can feel overwhelming but you have to try to combat from all angles more than one this is why the typical mino dosage for my SD just was not quite enuf – as the coinfections are getting in the way so to speak. Am now on 2 ABX daily one being a cyst buster along with other supplements & things like Bouluke for antifibrogen for the SD.
And also a couple of other immune modulators in addition to the Doxy which is one am also now LDN 4.5 mg’s & Melatonin 30 mg’s not the smaller 3 mg’s, both help to modulate the immune as my immune is so hard hit – the bartonella alone makes it tough to get over Lyme or slow down the SD.

In my case my heavy legs & feet I thought was from the SD – regardless what it is – moving was difficult & wearing &that has gotten better for now which i am glad of.

Sleeping is uncomfortable the melatonin & LDN help me with that – in being able to get into a deeper sleep.
I have added a mattress softer pad to our bed to try to help some of that.

Best – Jill SD, Lyme & Bartonella

[Creative77]

Re: LYME AND CO-INFECTION SYMPTOMS
by lynnie_sydney

[Creative77]

Re: LYME AND CO-INFECTION SYMPTOMS
by Debbie star

[Creative77]

Re: LYME AND CO-INFECTION SYMPTOMS
by cavalier

[cavalier]

Hi Creative – I did about 34 dives it is called in Hyperbaric O2 treatments & I got some of the inflammation down from doing that but I wanted to help keep this ground – so I did LDN after I completed the HBOT treatments & will continue on LDN for now along with ABX, supp’s and diet. I figure anything that can help to modulate the immune system which some ABX do as well but I figure knowing I have so many things going on at once – I need all the help I can find that is safe. It helps me sleep better deeper – which is very good – I have not felt this rested in 12 yr’s. Now some report that LDN does not agree with them – however since you can stop it at any time – I figured nothing ventured nothing gained. I have read up on LDN since early last fall didn’t jump to doing it right away but as this has unraveled I felt for what little it costs and my doc being open to it … I have only been on this now for 23 days – so it is early. It can increase fatigue & some aches like a herx – this is not untypical & some folks quit too soon not realizing that things can almost sometimes feel worse before they get better. I am sticking with it knowing this possiblity – but honestly it is hard for me to feel much worse sometimes – so … I have noticed though help in circulation & help with keeping inflammation down so I feel that is very important. It is not a cure but in order for my immune to work better to fight this along with AP. I read also that sometimes the BP rises for the 1st couple of weeks & then it adjusts – this happened to me but I knew this was temporary and just kept a eye on it – then it lowered by about 10 to 15 pt’s on the top & 10 on the bottom which is what my BP was before I get hit with all of this stuff so it is my guess this is showing the lowering of inflammation in my circulation – I will get some new labs soon & hoping i can see proof of that. Melatonin helps with increasing stem cells. Medicine is not a one size fits all in tolerance and working but for me knowing that LDN does not have to be weaned down if there is a issue – made it worth a trial for me to see, since slowing down the progression has been difficult for me – it’s all about peeling back the onion in trying to work at the layers.
I am going to see a Immunologist – he may not be able to contribute much but i figure why not?
I would like to know how well my immune is working if it is etc.

Best – Jill SD, Lyme & Bartonella

[cavalier]

To further clarify – The feet clearing of the Raynauds & help in reducing inflammation in my legs & joints was helped by the HBOT treatments, however they were not holding as well once I stopped the HBOT treatments, which took up a good amt. of my day to get to a good center and back as well as the time in the chamber, plus were costing me per treatment not covered by insur.

I was loosing ground with my feet after i stopped the HBOT – it was not able to hold, but once i started in with the LDN i got the normal coloring back to my feet again and my skin started to soften again, both of which i was not able to hold onto with just AP alone, before the HBOT or after HBOT, til I added in the LDN – for me for now I have to do more than one method perhaps due to the layers of coinfections going on at once. I dont believe i can get better without addressing all of the coinfections – we are now treating the bartonella with Rifampin for the 1st time & Doxy. I am doing much better than i was but I have a ways to go still. My hands and wrists dont hurt like they have for the last year however and for that I am glad I can do detailed grooming without my hands cramping or hurting. It is seldom they cramp anymore – instead of constantly it maybe once a day now if that often, compared to 7 to 10 times a hr to all of the time. My wrist bones can be seen again but my knuckles are still not completely normal looking but my fingers & toes are straighter, some of the lesions have lessened about 1/4 of the hands the part that spread recently has come back to normal this was last so makes some sense the oldest portion still remains. The puritis on my arms is less dark but the lesions on my arms remain the same. I do have hair back on my arms & hands that have been bare since 05 so there is some good changes. I have Northwestern Univ. in Chicago reviewing my info for their stem cell program – i am not sure I want my immune killed off to reimplant stem cells that are treated to remove the antibodies – there is risk to that – but I dont know if I do fat pad stem cells and they dont remove the antibodies if I will gain anything in the meantime will see what i can find out about my immune further before deciding to do anything.
Jill SD, Lyme & bartonella

Best- Jill

[cavalier]

some further tidbits on LDN –
Herxheimer Reaction http://www.lauricidin.com/herxheimer_reaction.asp
Rapid killing-off of large amounts of fungus, bacteria and/or viruses in the body can make one
feel very ill, and may occur when LDN is first started if the initial dose is too high. This is one
good reason it can be recommended to raise dosage slowly over a period of weeks and use
whatever other supplements or medications needed to combat infection, fungus or viruses. Why AP is so good with LDN.

LDN greatly helps adrenal fatigue, but it happens in a roundabout, indirect manner over
time, so I read to not expect immediate changes. It can take up to 18 months before noticing distinct changes in adrenal function.
ONE FULL YEAR is the recommended period to trial LDN to know for certain whether it
will work for a health issue

In the general sense, of course, anything marked by a weak immune system, which essentially is the description of every autoimmune disease out there, and of course there are bound to be probably a couple of hundred autoimmune diseases. Even diseases which aren

[Debbie star]

Thanks for all the info, greatly appreciated…

I am struggling at the moment.. I have been taking ldn for nearly 3months now.. I have had trouble taking it and am really disappointed as i felt it would really help in the mix… I got up to 1.5mg, but now back to 1mg as it makes me feel really wierd in the head and i dont get things done…makes me feel anxious too.. I am really confused as i need to make a decision as to whether or not to go off it..I’m not sure whether it is worth taking it as i read you need 1.75mg for it to make any difference..
Jill do you know about that??

I just switched over to minocin and am only taking 50mg every day so far..this week i will go up to twice a day.. I have had a lot of pain at night.. I have been taking 1 celebrex and this seems to help.. Like you Jill I feel this isnt enough.. How much are you taking??

My body is stiff as well as pain, so dont know if it is the herxing or even the LDN?? as i read that the LDN can cause worsening of muscle pain??

I have been seeing a massage girl and she is doing trigger point therapy… I am really not sure if this is a waste of time or not
or whether exercising is worth it.. she is concerned as she cant get my arms to move back etc,(having hard time dressing my self) lack of movement and the pain, and i dont know if it is the lyme? scleroderma?.herxing? LDN? or what is going on??

Anyone got any ideas

I may be wasting her time and mine and money i could be spending on other things,
looking forward to hearing from someone,
Debbie

[Eileen]

Hi Debbie,

Sorry to hear that you’re feeling so crummy. Ask your massage girl if she can do accupressure and lymphatic drainage. This helped me tremendously to get the crud bug toxins out of my body, but of course, it didn’t come without more pain and more herxing. If your girl is trained in this, and please be specific of asking her, a tip for you is to HYDRATE, HYDRATE, HYDRATE, before and after your appointment (for the whole day). I remember the first time my therapist did lymph. drainage, my urine was green and had major intestinal upset 😳 I could barely tolerate the pressure point therapy — felt like jumping off the table and running. Have her go very gently the first few times and be sure to come home and shower, go straight to bed for a rest and keep detoxing.

As for the LDN, I had some difficulty early on in my treatment, so needed to discontinue. Felt very jittery, but as my treatment progressed, I was able to get to 4.5 mgs. and it straightened my gut right out which was a miracle for me. I had spent so many years — yes, years in the bathroom.

Jumping far ahead into my treatment, have you considered IV glutithione?

Hope this helps.

Eileen

[cavalier]

Stiff neck & muscles early in the LDN experience is not uncommon – it can cause a true herx – I am herxing right now & it is tough but I would rather get a reaction than not at all – which i was getting for too long after 1st herxing when i 1st started on the mino.

In answer i was on Minocycline twice a day 100 mg’s each one daily 7 days a week other than when I had a IV – for about 6 months then my feet went black & I had not herxed in some time & I was getting amot of advancing new symptoms so Dr S. switched me to M W F 250 mgs of Zithromax once a day & nothing else. Then I still was not responding after 2 months of this with more progression – I found out I truly did have Lyme & we did Doxy & Zith – upon the Doxy I got the Bartonella red rod like rash upon us figuring out I had all of the classic Bartonella my lyme doc – put me on Doxy & Rifampin for now along with LDN & I am as i said herxing now – along with a naturopath’s herbal Lyme formula & lymph drainage formulas both doc’s know each other & know of what the other is doing. I am also on Boluoke a antifibrogen formula that one cant take enzymes with & Sycricue. Aqua Flow & Livotrit Plus along with Eskimo oil & supp’s selenium for 6 months only of 1,000 to 1,200 mg’s.
And other supps including Vit K2 which I have been on for some time. Something is kickin in.

I did read somewhere in the LDN literature that one can almost feel worse for a bit before they see improvements.

As to depression – this maybe because the LDN is actually working for you – if you read this below you may see why – it could be kicking up a component. I did feel a bit sad for a bit but it is getting better I felt this was likely temporary & to give it time to see – sure enuf it has seemed to pass it maybe again due to this being made to come forward & then hopefully moving on it could be the levels of inflammation rising at first then lowering – I also read that inflammation temporarily increases 1st then starts to lower –
“Could also explain why one of the common symptoms of MS, chronic fatigue, fibromyalgia, etc is depression. If that is the kind of depression that is brought on by systemic inflammation, then it is understandable that helping the immune system to clear the inflammation could help clear the depression. Here is a link to the actual study: http://www.mynewsdesk.com/se/view/pressrelease/oekad-kunskap-om-depression-och-sjaelvmord-270045 “

Jill SD, Lyme & bartonella …

[Anonymous]

I have found that LDN – Low Dose Naltrexone helps with pain levels immensely. It is not a stand alone treatment and I combine with antibiotic therapy.

[cavalier]

I strongly agree that LDN is not a stand alone treatment for most Rheum diseases – especially progressive ones – it can flare things up at 1st but supposed to help lower pain levels over time – if one can hang with it getting sometimes for some worse before it gets better. but it is a adjunct that can be helpful – for me it is really helpful for sleep – i need that without it i just cant get into a deep sleep as I wake up from pain yet I dont feel drugged like Ambien or something in that arena in the AM. Jill

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